Well, seven months or thereabouts since I last updated this and several people have asked if I am going to post again. A couple of people have even said they were worried that the lack of posting meant that news was less than good, so I apologise for causing any worry -I am still here, obviously!
The real reason I haven't posted in such a long time is that I feel I am in a different place now to where I was when I first set up the blog and for the 18 months or so afterwards. It helped me share news, it helped me offload and it helped me feel I was in control, even in a tiny way, of what was happening with me. And boy, did it help me! I think that at times it was the only thing that kept me on the right side of sanity and the calm side of anxiety. It was the only thing that let me share how I really felt, my deepest fears and worries, my love for my family and friends, and my deep, deep appreciation for our amazing NHS and all the health care professionals who have helped me through this. The comments left by friends helped me enormously ( even though they often made me cry!).
Where am I now? I have done some project work, so that's a definite return to normal. I am continuing to volunteer at the wonderful Orpheus Centre. I have been on holiday and am about to go and climb a blooming huge mountain in the French Alps. I have been going to the gym regularly, walking a lot and running a little. I am almost at the point where I think my voice may be reliable enough that I can return to the choir I had joined before I became ill. I am interested in what is going on around me. I am involved with Facial Palsy UK and embracing opportunities to publicise it in magazines or other media (obviously, this excludes the Daily Fail!!). I am busy, active and outward-looking. In recent days, I have been reading back on my blog and, while I recognise the scared, weak, angry and despairing woman who wrote those words, I can see how different I am now.
That doesn't mean that everything is wonderful every day - but, let's face it, is it like that for anyone? Really? I still get anxious before my oncology check-ups. I still worry about unexpected aches or anything slightly different in my anatomy. I still - even now - feel self-conscious about my face but I also know that I look so much better than when this all first happened or even than I looked a year ago.
So.....is there any need for me to continue with this blog? I think not. I think it has served its purpose. It helped me hugely and, I hope, it has perhaps helped other people who might have read it. Quite a lot of people have said I should try and get it published and maybe that is something I should have a look at. Tell me, what do you all think? Should I try and publish this somehow? Would it help others at all? Or would it just be pure vanity publishing? :-D
I end this entry - and this blog - by saying THANK YOU to every one of you who took the time and trouble to read this, to comment, to think of me, to hold me in your thoughts or prayers, to think of my family when we were going through our worst time.
I am still here. I am living the life I want to live. Life is good.
Friday, 6 September 2013
Thursday, 21 February 2013
The coincidence of date....
Once again, I start my blog post by lamenting the fact that I have, once more, failed in my intention to post regularly. I do mean to post, but I seem to find that I run out of time and, combined with my rubbish memory, this results in me giving myself a (metaphorical) slap on the forehead and uttering a Homer Simpson-esque "Doh!" as I realise that I've failed in my blogging mission.
However, today I find myself in the lucky position of having time and having remembered - this may not be quite so lucky for you, having to read my meandering thoughts!
The coincidence of date - this came to mind on January 13th this year, when Neil, Adam and I were climbing Helvellyn in the Lake District. We had persuaded Adam to come out with us. He's not a natural climber and hasn't taken advantage of being on the edge of the beautiful Lake District by going out and exploring those glorious mountains, so we were really pleased we managed to get him out with us. Hopeful that our day would inspire him to get out and enjoy those hills, we set off in snow and with ice underfoot. For the first hour, he was not too happy but soon he began to enjoy it and was striding forth confidently. Unfortunately, on the way down, he strode forth a bit too confidently, slipped on some ice and landed heavily on his right arm. He had obviously done something to it, as he couldn't bend it and was quite clearly in some considerable pain, so after we got off the mountain, Adam drawing in his breath every time he stumbled on some rough ground and sometimes yelping with pain, we went straight to A & E at Carlisle Hospital. An x-ray later, we were told he might have a fracture at the elbow but it was hard to tell, so he was strapped up in a fetching blue velcro sling and told to return to the fracture clinic the next day. Luckily, it turned out not to be broken, just badly bruised!
January 13th? In 2012, I was having my monthly check-up at the Marsden, not yet officially in remission, and my consultant found a suspiciously soft gland. Long wait for an ultrasound scan and a week later I was told there was nothing wrong. Even so, it was enough to bring back those feelings of helplessness, uncertainty, fear and lack of control I had experienced for so much of 2011 for that week of waiting.
I think next January 13th, I shall remain indoors and encourage the rest of my family to do the same!!
I know, I know it's bad luck to be superstitious, but even so.....
In other news, I am still working two days a week in London - I have really enjoyed this piece of project work. It's been great to use my brain and to feel I am making a difference and I have really missed the office buzz, the conversations while waiting for the kettle to boil, the planning, decision making, thinking process and the opportunity to make suggestions. Two days a week feels about right to me - that, with my one day a week volunteering at the wonderful Orpheus Centre, is about all I have stamina for at the moment.
I find this lack of stamina quite disappointing. I had hoped that, by now, I would be much nearer the stamina levels I had before I got ill. My friend, who herself is in remission from cancer, had said to me right from the start that it would take two years or thereabouts to get back to similar levels, but I did hope I would get there a bit early! I guess I have to remember that it's only 17 months since that gruelling treatment finished and only about a year since I started eating properly again, so all in all, perhaps I'm not doing too badly. I just miss that sense of having energy to spare, that need to do something to use up the spare energy. Instead, I find myself falling asleep on the train home from work, having almost hallucinations in that half-asleep-half-awake state so that I wonder if I am in some strange parallel universe. I don't remember getting this tired before being ill. Will it get better? I am trying to do the right things. I eat healthily, I exercise regularly, I sleep as much as I can, I drink lots of water - what more can I do?
Still, I'm alive, I'm doing so much more than even 6 months ago and I have my wonderful family and friends giving me constant support. I hope they feel I am giving something back to them too.
However, today I find myself in the lucky position of having time and having remembered - this may not be quite so lucky for you, having to read my meandering thoughts!
The coincidence of date - this came to mind on January 13th this year, when Neil, Adam and I were climbing Helvellyn in the Lake District. We had persuaded Adam to come out with us. He's not a natural climber and hasn't taken advantage of being on the edge of the beautiful Lake District by going out and exploring those glorious mountains, so we were really pleased we managed to get him out with us. Hopeful that our day would inspire him to get out and enjoy those hills, we set off in snow and with ice underfoot. For the first hour, he was not too happy but soon he began to enjoy it and was striding forth confidently. Unfortunately, on the way down, he strode forth a bit too confidently, slipped on some ice and landed heavily on his right arm. He had obviously done something to it, as he couldn't bend it and was quite clearly in some considerable pain, so after we got off the mountain, Adam drawing in his breath every time he stumbled on some rough ground and sometimes yelping with pain, we went straight to A & E at Carlisle Hospital. An x-ray later, we were told he might have a fracture at the elbow but it was hard to tell, so he was strapped up in a fetching blue velcro sling and told to return to the fracture clinic the next day. Luckily, it turned out not to be broken, just badly bruised!
January 13th? In 2012, I was having my monthly check-up at the Marsden, not yet officially in remission, and my consultant found a suspiciously soft gland. Long wait for an ultrasound scan and a week later I was told there was nothing wrong. Even so, it was enough to bring back those feelings of helplessness, uncertainty, fear and lack of control I had experienced for so much of 2011 for that week of waiting.
I think next January 13th, I shall remain indoors and encourage the rest of my family to do the same!!
I know, I know it's bad luck to be superstitious, but even so.....
In other news, I am still working two days a week in London - I have really enjoyed this piece of project work. It's been great to use my brain and to feel I am making a difference and I have really missed the office buzz, the conversations while waiting for the kettle to boil, the planning, decision making, thinking process and the opportunity to make suggestions. Two days a week feels about right to me - that, with my one day a week volunteering at the wonderful Orpheus Centre, is about all I have stamina for at the moment.
I find this lack of stamina quite disappointing. I had hoped that, by now, I would be much nearer the stamina levels I had before I got ill. My friend, who herself is in remission from cancer, had said to me right from the start that it would take two years or thereabouts to get back to similar levels, but I did hope I would get there a bit early! I guess I have to remember that it's only 17 months since that gruelling treatment finished and only about a year since I started eating properly again, so all in all, perhaps I'm not doing too badly. I just miss that sense of having energy to spare, that need to do something to use up the spare energy. Instead, I find myself falling asleep on the train home from work, having almost hallucinations in that half-asleep-half-awake state so that I wonder if I am in some strange parallel universe. I don't remember getting this tired before being ill. Will it get better? I am trying to do the right things. I eat healthily, I exercise regularly, I sleep as much as I can, I drink lots of water - what more can I do?
Still, I'm alive, I'm doing so much more than even 6 months ago and I have my wonderful family and friends giving me constant support. I hope they feel I am giving something back to them too.
Monday, 21 January 2013
Hospital 1, hospital 2 and hospital 3...
As I write this, there's snow on the ground. Not a lot of snow, but enough to disrupt the transport system, it would seem. I don't remember my school closing because of snow when I was growing up (in a place much colder and with harsher winters than the South-East of England) - am I viewing the past through the rosy lenses of nostalgia? Were the summers endlessly long, always sunny and full of laughter? Maybe not, but perhaps my old school friends might remember if our school stayed open whatever the weather - I seem to recall the only days the school was closed was when the teachers went on strike!!
The snow started falling on Friday, as I was driving to the Marsden for my three-monthly check-up. Anxious enough about the check-up, as always, the anticipation of poor weather and difficult driving conditions heightened my nerves. The hospital car park was pretty empty and I did wonder if my check-up would go ahead or whether the doctors would have struggled to get in and I might be told to return another day - not a prospect I relished, as I still have to psyche myself up before the appointment and I would have to go through that process all over again. Luckily for me, however, the Head and Neck clinic doctors had managed to get in, although a lot of patients were phoning in to say they couldn't travel to hospital and the waiting room was much emptier than usual!
Of course, the important thing is how the check-up went, not whether the waiting room was empty. After the usual physical examination of my head and neck and a look inside my mouth, the registrar pronounced that everything is fine - phew! All it means is that I remain in remission and there is no sign of the cancer returning in that area, but to be honest, that's as good as I can expect and hope for at this stage. It doesn't mean the medics are prepared to give me an all clear and state categorically that I am free of cancer, but it means that I am now a year in remission - pretty bloody good when I think of how I felt for most of 2011 and the thought of being alive in 2013 seemed like an impossible dream. I can't stop cancer by willpower - if we could, how wonderful would that be? - but I can give myself the best possible chance of remaining healthy by taking responsibility for my health and eating sensibly, exercising, resting and avoiding risk factors. That doesn't mean I don't enjoy life - quite the reverse. It just means I am giving myself the best chance of being able to deal with any health problems that come my way.
The other side of my cancer coin is the facial palsy. On January 3rd, I went to the Queen Victoria Hospital in East Grinstead to have my gold weight (aka "eyelid bling") repositioned and my eyelid lift. I had to be there for half seven in the moring, which meant waking my lovely children in time to drive me there (neither of them was working that day, so they volunteered to take me - good children!). The surgeon came to talk to me before the operation and - to my pleasure - he said he thought I didn't need the gold weight any more and was going to remove it. Yay! He also thought I was a bit allergic to the gold (oh, I am so precious!) so it made sense to remove it. The important thing was whether I would be able to close my eye fully after the weight was removed and if I couldn't, then the next stage would be a platimun chain inserted into the eyelid - rising up the precious metal scale!
Now, nearly three weeks after the surgery, my eye looks much more like it used to BC. While it's not exactly as it was, and not exactly like my unaffected eye, it is far less noticeably different. This is progress. This helps me feel that I look more like everyone else and a bit more like I used to look. It also reminds me that it doesn't have to be all about oncology. A part of me also thinks that the NHS wouldn't be investing all this time and money in addressing my facial palsy if they thought that I was going to be ill again - perhaps this is naive, but it makes me feel better anyway :-) In a flurry of January medical appointment, I also had some Botox around my mouth, so I am all procedured-up.
Part of me feels a bit sad that my year has started with so many medical appointments, all of them necessary because of having had cancer. What a nasty, far-reaching disease it is! But another part of me rejoices that I am still here and enjoying life, that I have so many wonderful, supportive friends around me, that my family continues to be a constant joy to me and that the world contunues to turn. There's much to be thankful for. I am thankful.
The snow started falling on Friday, as I was driving to the Marsden for my three-monthly check-up. Anxious enough about the check-up, as always, the anticipation of poor weather and difficult driving conditions heightened my nerves. The hospital car park was pretty empty and I did wonder if my check-up would go ahead or whether the doctors would have struggled to get in and I might be told to return another day - not a prospect I relished, as I still have to psyche myself up before the appointment and I would have to go through that process all over again. Luckily for me, however, the Head and Neck clinic doctors had managed to get in, although a lot of patients were phoning in to say they couldn't travel to hospital and the waiting room was much emptier than usual!
Of course, the important thing is how the check-up went, not whether the waiting room was empty. After the usual physical examination of my head and neck and a look inside my mouth, the registrar pronounced that everything is fine - phew! All it means is that I remain in remission and there is no sign of the cancer returning in that area, but to be honest, that's as good as I can expect and hope for at this stage. It doesn't mean the medics are prepared to give me an all clear and state categorically that I am free of cancer, but it means that I am now a year in remission - pretty bloody good when I think of how I felt for most of 2011 and the thought of being alive in 2013 seemed like an impossible dream. I can't stop cancer by willpower - if we could, how wonderful would that be? - but I can give myself the best possible chance of remaining healthy by taking responsibility for my health and eating sensibly, exercising, resting and avoiding risk factors. That doesn't mean I don't enjoy life - quite the reverse. It just means I am giving myself the best chance of being able to deal with any health problems that come my way.
The other side of my cancer coin is the facial palsy. On January 3rd, I went to the Queen Victoria Hospital in East Grinstead to have my gold weight (aka "eyelid bling") repositioned and my eyelid lift. I had to be there for half seven in the moring, which meant waking my lovely children in time to drive me there (neither of them was working that day, so they volunteered to take me - good children!). The surgeon came to talk to me before the operation and - to my pleasure - he said he thought I didn't need the gold weight any more and was going to remove it. Yay! He also thought I was a bit allergic to the gold (oh, I am so precious!) so it made sense to remove it. The important thing was whether I would be able to close my eye fully after the weight was removed and if I couldn't, then the next stage would be a platimun chain inserted into the eyelid - rising up the precious metal scale!
Now, nearly three weeks after the surgery, my eye looks much more like it used to BC. While it's not exactly as it was, and not exactly like my unaffected eye, it is far less noticeably different. This is progress. This helps me feel that I look more like everyone else and a bit more like I used to look. It also reminds me that it doesn't have to be all about oncology. A part of me also thinks that the NHS wouldn't be investing all this time and money in addressing my facial palsy if they thought that I was going to be ill again - perhaps this is naive, but it makes me feel better anyway :-) In a flurry of January medical appointment, I also had some Botox around my mouth, so I am all procedured-up.
Part of me feels a bit sad that my year has started with so many medical appointments, all of them necessary because of having had cancer. What a nasty, far-reaching disease it is! But another part of me rejoices that I am still here and enjoying life, that I have so many wonderful, supportive friends around me, that my family continues to be a constant joy to me and that the world contunues to turn. There's much to be thankful for. I am thankful.
Tuesday, 1 January 2013
And so it's 2013....
January 1st. A new month, a new year.
Last year, I wanted to draw a line under 2011 and forget - or at least try to forget - all the horrible experiences of the year. My little family and I had suffered much over the previous 8 months and I hoped that going to bed (before midnight) and waking up in a brand new year would mean we could leave all that nasty stuff behind us. Well, we all know that there were some ups and downs during 2012, don't we? - starting off with the scare in January (yes, I couldn't even manage one month without experiencing that sinking feeling when the consultant finds something that makes him worried and I trundle down the path of scan - wait -result). Thankfully, it was just a scare, but it did make me realise a bit more emphatically that I can't relax and assume that my body is now behaving properly.
February brought my PET CT scan and confirmation that I appear to be in remission - usual caveats applied, obviously! That took a while to sink in, as I was out of the habit of dealing with good news about my health....however, finally I accepted it and felt that I could move on to focus on dealing with the facial palsy resulting from my surgery.
Good friends helped greatly during the year - Fin, my old university friend, really helped my confidence by taking me on a star-studded extravaganza with a night at the Olivier Awards ceremony. Who doesn't love a chance to dress up in a posh frock and sip with people you are used to seeing on the television, stage or pages of a newspaper? My local and church friends, my running friends, my wonderful school friends, other friends - all gave unstintingly of their time, support and advice to help me adjust to being in remission and learning to be confident again, bit by bit, sometimes one step forward and two steps back. And of course - my little family. Neil, Amy and Adam continued to help me every day, in small and big ways. Whether it's been taking me to hospital for my eye surgery and further check-ups, coming shopping with me, planning and taking me on wonderful holidays or making me cups of tea - they've done it all, quietly and for no other reason than that they care for me and want me to be well and happy.
So I start 2013 feeling and looking much better than at this time last year. I have been out for a run this morning, as part of my plan to be as fit and healthy as I can be. When I think how scrawny and lacking in energy I was this time last year, I can see how much progress I've made. My face has improved and (hopefully) will continue to do so, although it's all very marginal. I have more eye surgery in two days' time, on the 3rd, when I shall have my eyelid bling repositioned and an eyelid lift, no less! I shall have a fortnight of looking as if I have gone several rounds with a prize heavyweight boxer, with bruising, swelling and those little strip stitches that fall off before they're supposed to. This will all be accompanied by some pain and discomfort, but hopefully by the time all the swelling has gone down, my eye won't look so heavy and it will be more like my right eye. Fingers crossed, anyway!
I've still got a raft of appointments in store. My next oncology check-up will be in just over a fortnight and I can feel the stirrings of anxiety as I get closer to the date. I try to tell myself that it's silly to feel like this and that there's no reason to think that the oncologist will find anything wrong, but there's still that nagging doubt and worry. I can sometimes go whole days without actually thinking about having had cancer, but I'm not yet at the stage where enough time and distance have passed that I can relax about it. It still hovers in the back of my mind, waiting to sneak up and catch me when I don't expect it. I'm sure this will get better but not quite yet.
And finally, on this day, I remember Anne, a friend from university who was married to another friend, Fin. A lovely, kind, intelligent, funny and beautiful girl, who died of cancer exactly 10 years ago today. I know Fin misses her every day. Spare a thought for her and for Fin.
Here's to 2013 - may it bring you all you wish yourself.
Friday, 14 December 2012
A little weekend away.....
My last blog was written the day we had the press launch of Facial Palsy UK. Since then, the charity has had a very respectable amount of coverage in the press and on tv and radio as well. I have had to break the habits of a lifetime and buy some newspapers that I would normally not allow over the threshold, but I took the view that it was for a greater good.....still felt a bit soiled though, and I don't mean from newsprint rubbing off on my hands! It's interesting how long-held principles can be put to one side when something assumes a greater importance.
It has been great to see the number of people liking our pages on Facebook - raising the profile of FPUK is absolutely vital. I'm more frustrated and disappointed than ever that I haven't managed to get a place in the 2013 London Marathon, as it would have been a great opportunity to raise money and publicity for the charity. On the other hand, I do feel very aware that I approach the same pool of very generous friends to sponsor me for (undeniably) good causes and I think it's probably a good thing to take some time out from holding out the begging bowl! So, all you lovely people, you can breathe easily and know that I won't be sending out my usual begging email.
In other news, Neil and I went to Krakow for a long weekend. We'd never been to Poland before and weren't planning on going away at all (we tend to go away every other year to Austria to visit the Christmas markets and we weren't due to go away this December ), but we made a fairly spontaneous decision to go away and picked Krakow. Neil spent hours researching hotels, restaurants, museums and other attractions, as is his wont. We have different, complementary, approaches to holidays. I am happy just to know where we are going, but Neil likes to plan things and research things a lot more so that we get the most out of our time away. It always works, as we seem to pack a lot into our times away, but without feeling that we are wearing ourselves out!
One of the things we wanted to do when in Krakow was go to Auschwitz. That might sound a bit
odd, planning to visit a place of such suffering during a mini-break, but we felt it was important, almost a mark of respect, that we go. There were about 30 of us on the bus from Krakow to Auschwitz and we were totally silent all the way there. It was as if we were preparing for the sombreness and seriousness of what awaited us when we disembarked. It started snowing as we travelled, which seemed somehow appropriate to the setting.
Entry to Auschwitz is free, as stipulated by its survivors. Once through the barriers, it's a short walk to the tall iron gates with those chilling words "Arbeit macht frei" - I've seen them in so many films, but standing there, imagining how thousands of people might have felt walking under those three little words, was a different kind of reality. There's nothing sensationalist about how the museum presents itself. It doesn't need to add any Disney-esque exaggeration because the facts are dramatic enough and almost unspeakable in their scale. Everything is displayed with quiet dignity but with huge impact. Mountains of human hair, hacked from the heads of those arriving, some hanks of hair still with ribbons tied round them. Piles and piles of children's shoes, tiny sizes. Twisted metal spectacles. Pots and pans, brought in the naive belief that those rounded up and herded onto planes were really going to a labour camp, not to be executed. Row upon row upon row of black and white photos of prisoners, all in the striped uniform of the camp, with names, dates of birth, arrival in Auschwitz and death printed underneath. Occasionally, a flower tucked behind the frame of a photo, left by a relative. The sheer scale of it is hard to convey. Walking around, snow falling, feeling cold despite our 21st century warm clothing didn't even give us a fraction of an insight into how unspeakably cold and desolate it must have been for inmates. The fact that anyone survived those conditions is little short of a miracle, really.
You might think that visiting Auschwitz would throw a blanket of sadness over our whole weekend, but it didn't - a little to my surprise, I have to admit. We had already spent two days in Krakow, visiting the zoo, various churches, Christmas markets and a fabulous underground museum and had saved Auschwitz till our last full day. We didn't go to Auschwitz 2 -Birkenau; by the time we had spent several hours going round Auschwitz, we both felt we had had sufficient reminders of man's inhumanity without seeing any more.
Krakow itself is beautiful and luckily everyone speaks English, because our attempts to speak Polish were pitiful! I can't find any reference points between Polish and any other language I can speak, so it is a complete mystery to me. It took us four days to be able to say anything approximating the word for "thank you" that might be understood by a Polish speaker! Lovely hotel, right in the middle of town and close to the main town square, plenty of fabulous restaurants and everything seemed very cheap - result!!
Nothin new to report on the health front - I'm not due for a check-up with my oncologist until January, so plenty of time for the nerves and anxiety to kick in. I'm going to a Head and Neck Cancer support group meeting tomorrow in Maidstone, although I'm starting to question how helpful these are for me. I feel almost as if I don't want to be reminded of the fact that I have had cancer through actively going to groups like this. I know what's happened to me and my regular check-ups are reminder enough. Do I really need to seek out something which will remind me of my darkest days? Then again, this is a group which in itself is really positive and friendly, so perhaps there is something to be gained from spending time with others who have gone through something similar. Perhaps there is something I can give others in the group. I am not sure. I almost feel as if my emphasis has shifted to my facial palsy and my involvement with FPUK suggests that I am ready to move on to a more forward looking position. Does that make sense? I *think* it does. I shall go tomorrow and review the situation afterwards.
Starting to gear up for Christmas now - Adam comes home from university next week and I am so looking forward to having my little family complete again. Then Christmas can begin!
It has been great to see the number of people liking our pages on Facebook - raising the profile of FPUK is absolutely vital. I'm more frustrated and disappointed than ever that I haven't managed to get a place in the 2013 London Marathon, as it would have been a great opportunity to raise money and publicity for the charity. On the other hand, I do feel very aware that I approach the same pool of very generous friends to sponsor me for (undeniably) good causes and I think it's probably a good thing to take some time out from holding out the begging bowl! So, all you lovely people, you can breathe easily and know that I won't be sending out my usual begging email.
In other news, Neil and I went to Krakow for a long weekend. We'd never been to Poland before and weren't planning on going away at all (we tend to go away every other year to Austria to visit the Christmas markets and we weren't due to go away this December ), but we made a fairly spontaneous decision to go away and picked Krakow. Neil spent hours researching hotels, restaurants, museums and other attractions, as is his wont. We have different, complementary, approaches to holidays. I am happy just to know where we are going, but Neil likes to plan things and research things a lot more so that we get the most out of our time away. It always works, as we seem to pack a lot into our times away, but without feeling that we are wearing ourselves out!
One of the things we wanted to do when in Krakow was go to Auschwitz. That might sound a bit
odd, planning to visit a place of such suffering during a mini-break, but we felt it was important, almost a mark of respect, that we go. There were about 30 of us on the bus from Krakow to Auschwitz and we were totally silent all the way there. It was as if we were preparing for the sombreness and seriousness of what awaited us when we disembarked. It started snowing as we travelled, which seemed somehow appropriate to the setting.
Entry to Auschwitz is free, as stipulated by its survivors. Once through the barriers, it's a short walk to the tall iron gates with those chilling words "Arbeit macht frei" - I've seen them in so many films, but standing there, imagining how thousands of people might have felt walking under those three little words, was a different kind of reality. There's nothing sensationalist about how the museum presents itself. It doesn't need to add any Disney-esque exaggeration because the facts are dramatic enough and almost unspeakable in their scale. Everything is displayed with quiet dignity but with huge impact. Mountains of human hair, hacked from the heads of those arriving, some hanks of hair still with ribbons tied round them. Piles and piles of children's shoes, tiny sizes. Twisted metal spectacles. Pots and pans, brought in the naive belief that those rounded up and herded onto planes were really going to a labour camp, not to be executed. Row upon row upon row of black and white photos of prisoners, all in the striped uniform of the camp, with names, dates of birth, arrival in Auschwitz and death printed underneath. Occasionally, a flower tucked behind the frame of a photo, left by a relative. The sheer scale of it is hard to convey. Walking around, snow falling, feeling cold despite our 21st century warm clothing didn't even give us a fraction of an insight into how unspeakably cold and desolate it must have been for inmates. The fact that anyone survived those conditions is little short of a miracle, really.
You might think that visiting Auschwitz would throw a blanket of sadness over our whole weekend, but it didn't - a little to my surprise, I have to admit. We had already spent two days in Krakow, visiting the zoo, various churches, Christmas markets and a fabulous underground museum and had saved Auschwitz till our last full day. We didn't go to Auschwitz 2 -Birkenau; by the time we had spent several hours going round Auschwitz, we both felt we had had sufficient reminders of man's inhumanity without seeing any more.
Krakow itself is beautiful and luckily everyone speaks English, because our attempts to speak Polish were pitiful! I can't find any reference points between Polish and any other language I can speak, so it is a complete mystery to me. It took us four days to be able to say anything approximating the word for "thank you" that might be understood by a Polish speaker! Lovely hotel, right in the middle of town and close to the main town square, plenty of fabulous restaurants and everything seemed very cheap - result!!
Nothin new to report on the health front - I'm not due for a check-up with my oncologist until January, so plenty of time for the nerves and anxiety to kick in. I'm going to a Head and Neck Cancer support group meeting tomorrow in Maidstone, although I'm starting to question how helpful these are for me. I feel almost as if I don't want to be reminded of the fact that I have had cancer through actively going to groups like this. I know what's happened to me and my regular check-ups are reminder enough. Do I really need to seek out something which will remind me of my darkest days? Then again, this is a group which in itself is really positive and friendly, so perhaps there is something to be gained from spending time with others who have gone through something similar. Perhaps there is something I can give others in the group. I am not sure. I almost feel as if my emphasis has shifted to my facial palsy and my involvement with FPUK suggests that I am ready to move on to a more forward looking position. Does that make sense? I *think* it does. I shall go tomorrow and review the situation afterwards.
Starting to gear up for Christmas now - Adam comes home from university next week and I am so looking forward to having my little family complete again. Then Christmas can begin!
Friday, 16 November 2012
The one where we become official!!!
Sometimes weeks go by with nothing special happening, no events worthy of note, just ordinary, everyday life - nothing wrong with that! In fact, ordinary, everyday life is precious to me because I wasn't sure, during my darkest, illest days last year, whether I'd experience it again. Even today, I'm honestly not sure how many ordinary, everyday times I have ahead of me, but that's not something to dwell upon, is it?
This week hasn't been one of those ordinary weeks, though. Since blogging on Tuesday about my beloved Sodbury Slog, amongst other things, I have had quite an eventful few days, starting with Wednesday, when I had a follow-up appointment with my eye surgeon.
You'll remember that in July, I had my tarsorrhaphy reversed and my gold weight inserted. This was my follow-up appointment to see how things are going. We started with a sight test (20:20 or 6/6 as they seem to call it now) and the dreaded pressure test, although it wasn't the puff of air in the eye test they used to do. Instead they put stingy (as in they sting, not that they are mean!) eye drops in the eye to numb it and then measure the pressure of the eyeball with some little electronic contraption. All very high-tech. Anyway, the pressure was perfect so no signs of glaucoma. Then, time to see the specialist.
First I saw one of the junior staff - not sure of his grade, but I think he might have been a registrar. He has been specialising in eye surgery/conditions for 8 years so by my reckoning, he must be at least 30, but he looked as if he'd just left school! Definitely a function of my getting older, I think! I wanted to explain that my eyelid felt heavy and droopy, especially at night or when I read and am looking downwards. It's not that I am ungrateful for what's been done - anything but! - but I felt it better to say how I feel rather than pretend everything is fine. I explained all this to the doctor and he was very understanding and said I was right to say what I felt. He measured my eyes and confirmed my eyelid was droopy and also that my gold weight (aka "eyelid bling" - copyright me!) had moved from the centre of my eyelid into the inner corner of my upper eyelid. He thought this was something that could be remedied, so I had to wait to see the consultant, who always likes to discuss the cases with the other doctor and patient as part of his mentoring and coaching (how good is this hospital? They do things properly!). When I saw the consultant, the first thing he said, once I'd sat down, was "How do you feel? How are things for you?" and I explained about the heaviness and drooping eyelid and, once again, said I didn't want him to think I was being ungrateful after all his hard work. He reassured me that, to him, what's important is how the patient feels and that it's not his job to tell patients how they should feel but to work with them to get the best outcome. Phew! After some discussion and examination, the outcome is that he is going to pull the muscle forward from behind my eye and reposition my gold weight. Apparently, my blinking is better than about 90% or more of facial palsy patients he sees, with my eye closure at 100%, so pulling the muscle forwards should lift my eyelid and remove the droopiness. Yes, friends, I am having an eyelid lift, just like ageing celebrities have in an attempt to stave off the effects of gravity! And all on the NHS, too! He wants to do it in the next three months as he sees no point in waiting and wants me to feel better about how I look as soon as possible. I've had the pre-assessment already, so now I just have to wait for the date.
How lucky am I to be treated at this hospital? Yet again, I have been treated as a person whose opinion and feelings matter. I've not been talked down to, or talked over, I've been asked what I want the outcome to be. It's quite empowering to be told that your feelings are important in the medical decisions to be made.
I know how very lucky I am to have been treated at the Queen Victoria Hospital and it's really just because I happen to live in this area and I happened to be referred here last year for investigation into the lumps in my neck and it just happens to be the best place in the country for facial reconstructive surgery and associated procedures. Not everyone is as lucky, as is obvious from the statistics about access to treatment for patients with facial palsy. The average wait to access treatment is almost 6 years. 6 years!! - can you imagine living with all the functional difficulties, all the social anxieties and psychological damage facial palsy brings for nearly 6 years, thinking it will never change, never improve? Paralysis of the face brings social paralysis as well, I think. Self-confidence and self-esteem plummet, as I know from experience - and I was one of the lucky ones, with access to physical and psychological support at the earliest opportunity!
Which brings me to today, and the Press Launch of Facial Palsy UK. I've been involved, in a small way, with helping to set up this hugely important charity, the first in the UK dedicated to supporting people with facial palsy. The brainchild of Charles Nduka, my plastic surgeon, it's thanks to his vision and dedication, and that of a number of other health care specialists, including my lovely specialist speech therapist, that this day has arrived. I was one of six people with facial palsy who made short speeches to the assembled journalists, medics and other FP patients. I hadn't scripted anything, as I prefer to speak from the heart; it's more natural for me that way. I wanted to cover the psychological aspects of having FP, including the crippling lack of self-confidence. Well, I started speaking, I was fine, I was even joking about how I didn't look much like the photo on the screen of me before I developed FP - and then I started talking about how I had struggled with feelings of no self-confidence and that I had kept saying to Neil "Don't leave me, don't leave me" and that I felt ugly - that's when the tears started. I wanted to say that I mourn the face I've lost and that I miss it. I think I just about managed to blub the words out! It was a bit unexpected, but actually, it was probably the best thing I could have done, because it demonstrated very visibly the impact that FP has on people. For me, there's the double whammy aspect that I can't easily separate the FP from having had cancer, because whenever I look at my face, it reminds me that I only look like this because of that nasty, evil disease. It makes it hard to forget.
However, I would like to record my pride that I managed to make the journalists and the medics cry too! That's quite an achievement <beams lopsidedly with pride>. I had a nice chat with one of the professors during our tea break and he was very sweet about it, saying it was the best thing I could have done because it was obvious I spoke straight from the heart. In a "small world" moment, one of Amy's professors from uni was there - she is a professor of the psychology of visible difference and Amy did her dissertation on this - so I had a chat with her too. One of the questions during the Q&A session was asking how we dealt with the psychological aspects and I had spoken of the importance of returning to running and exercise and how it was about ticking another box in the checklist called "Normal", and the Amy's professor was in total agreement, so we had a good chat about that. I also had a photo opportunity with the very lovely Colin Salmon, whose wife has facial palsy. She is a trustee of the charity and he is a patron.
The media do seem to be picking up on facial palsy - we had someone on BBC Breakfast this morning, there was an article on Five Live, something on newsbeat and one of our members will be appearing in the Mail on Sunday shortly. This is all brilliant publicity for our charity but we need to continue to generate publicity - and funds! Having facial palsy isn't cosmetic - it's functional, it's emotional, it's psychological, it permeates all aspects of your life, sometimes in the most unexpected ways, like believing that you can't drive, which happened to me. This is not about looks-obsessed people wanting to look perfect. This is about being normal.
All of us today appreciated the support and love of our families and friends. I hope you all know this!
This week hasn't been one of those ordinary weeks, though. Since blogging on Tuesday about my beloved Sodbury Slog, amongst other things, I have had quite an eventful few days, starting with Wednesday, when I had a follow-up appointment with my eye surgeon.
You'll remember that in July, I had my tarsorrhaphy reversed and my gold weight inserted. This was my follow-up appointment to see how things are going. We started with a sight test (20:20 or 6/6 as they seem to call it now) and the dreaded pressure test, although it wasn't the puff of air in the eye test they used to do. Instead they put stingy (as in they sting, not that they are mean!) eye drops in the eye to numb it and then measure the pressure of the eyeball with some little electronic contraption. All very high-tech. Anyway, the pressure was perfect so no signs of glaucoma. Then, time to see the specialist.
First I saw one of the junior staff - not sure of his grade, but I think he might have been a registrar. He has been specialising in eye surgery/conditions for 8 years so by my reckoning, he must be at least 30, but he looked as if he'd just left school! Definitely a function of my getting older, I think! I wanted to explain that my eyelid felt heavy and droopy, especially at night or when I read and am looking downwards. It's not that I am ungrateful for what's been done - anything but! - but I felt it better to say how I feel rather than pretend everything is fine. I explained all this to the doctor and he was very understanding and said I was right to say what I felt. He measured my eyes and confirmed my eyelid was droopy and also that my gold weight (aka "eyelid bling" - copyright me!) had moved from the centre of my eyelid into the inner corner of my upper eyelid. He thought this was something that could be remedied, so I had to wait to see the consultant, who always likes to discuss the cases with the other doctor and patient as part of his mentoring and coaching (how good is this hospital? They do things properly!). When I saw the consultant, the first thing he said, once I'd sat down, was "How do you feel? How are things for you?" and I explained about the heaviness and drooping eyelid and, once again, said I didn't want him to think I was being ungrateful after all his hard work. He reassured me that, to him, what's important is how the patient feels and that it's not his job to tell patients how they should feel but to work with them to get the best outcome. Phew! After some discussion and examination, the outcome is that he is going to pull the muscle forward from behind my eye and reposition my gold weight. Apparently, my blinking is better than about 90% or more of facial palsy patients he sees, with my eye closure at 100%, so pulling the muscle forwards should lift my eyelid and remove the droopiness. Yes, friends, I am having an eyelid lift, just like ageing celebrities have in an attempt to stave off the effects of gravity! And all on the NHS, too! He wants to do it in the next three months as he sees no point in waiting and wants me to feel better about how I look as soon as possible. I've had the pre-assessment already, so now I just have to wait for the date.
How lucky am I to be treated at this hospital? Yet again, I have been treated as a person whose opinion and feelings matter. I've not been talked down to, or talked over, I've been asked what I want the outcome to be. It's quite empowering to be told that your feelings are important in the medical decisions to be made.
I know how very lucky I am to have been treated at the Queen Victoria Hospital and it's really just because I happen to live in this area and I happened to be referred here last year for investigation into the lumps in my neck and it just happens to be the best place in the country for facial reconstructive surgery and associated procedures. Not everyone is as lucky, as is obvious from the statistics about access to treatment for patients with facial palsy. The average wait to access treatment is almost 6 years. 6 years!! - can you imagine living with all the functional difficulties, all the social anxieties and psychological damage facial palsy brings for nearly 6 years, thinking it will never change, never improve? Paralysis of the face brings social paralysis as well, I think. Self-confidence and self-esteem plummet, as I know from experience - and I was one of the lucky ones, with access to physical and psychological support at the earliest opportunity!
Which brings me to today, and the Press Launch of Facial Palsy UK. I've been involved, in a small way, with helping to set up this hugely important charity, the first in the UK dedicated to supporting people with facial palsy. The brainchild of Charles Nduka, my plastic surgeon, it's thanks to his vision and dedication, and that of a number of other health care specialists, including my lovely specialist speech therapist, that this day has arrived. I was one of six people with facial palsy who made short speeches to the assembled journalists, medics and other FP patients. I hadn't scripted anything, as I prefer to speak from the heart; it's more natural for me that way. I wanted to cover the psychological aspects of having FP, including the crippling lack of self-confidence. Well, I started speaking, I was fine, I was even joking about how I didn't look much like the photo on the screen of me before I developed FP - and then I started talking about how I had struggled with feelings of no self-confidence and that I had kept saying to Neil "Don't leave me, don't leave me" and that I felt ugly - that's when the tears started. I wanted to say that I mourn the face I've lost and that I miss it. I think I just about managed to blub the words out! It was a bit unexpected, but actually, it was probably the best thing I could have done, because it demonstrated very visibly the impact that FP has on people. For me, there's the double whammy aspect that I can't easily separate the FP from having had cancer, because whenever I look at my face, it reminds me that I only look like this because of that nasty, evil disease. It makes it hard to forget.
However, I would like to record my pride that I managed to make the journalists and the medics cry too! That's quite an achievement <beams lopsidedly with pride>. I had a nice chat with one of the professors during our tea break and he was very sweet about it, saying it was the best thing I could have done because it was obvious I spoke straight from the heart. In a "small world" moment, one of Amy's professors from uni was there - she is a professor of the psychology of visible difference and Amy did her dissertation on this - so I had a chat with her too. One of the questions during the Q&A session was asking how we dealt with the psychological aspects and I had spoken of the importance of returning to running and exercise and how it was about ticking another box in the checklist called "Normal", and the Amy's professor was in total agreement, so we had a good chat about that. I also had a photo opportunity with the very lovely Colin Salmon, whose wife has facial palsy. She is a trustee of the charity and he is a patron.
The media do seem to be picking up on facial palsy - we had someone on BBC Breakfast this morning, there was an article on Five Live, something on newsbeat and one of our members will be appearing in the Mail on Sunday shortly. This is all brilliant publicity for our charity but we need to continue to generate publicity - and funds! Having facial palsy isn't cosmetic - it's functional, it's emotional, it's psychological, it permeates all aspects of your life, sometimes in the most unexpected ways, like believing that you can't drive, which happened to me. This is not about looks-obsessed people wanting to look perfect. This is about being normal.
All of us today appreciated the support and love of our families and friends. I hope you all know this!
Tuesday, 13 November 2012
Money and mud....
People are so generous. Even at this time, when there's not a lot of spare money floating about and everyone is feeling the pinch, we raised £1500 for Facial Palsy UK at our CIPFA SE Dinner on Friday night. I was feeling a bit anxious beforehand, as I mentioned in last week's blog, and this anxiety manifested itself in a nagging headache which began at about 3 o'clock on Friday afternoon and remained there, despite taking some paracetamol. For the first time in a long time, I hadn't any of my super-duper co-codamol with me, which might have got rid of my headache had I been able to take them! My headache continued to develop during the rest of the afternoon and early evening and eventually led to me leaving at about half ten to go home - but first, the dinner! We had a champagne reception beforehand (how lucky for me, given that it's the only alcohol I can tolerate) and while people were sipping at their drinks, Ro and I were going around "persuading" people to buy some raffle tickets.
At the beginning of the meal, once everyone was seated, our regional President invited me up to say a few words about Facial Palsy UK....in front of 240 people. Imagine standing up in front of a room with that number of people in it when you feel completely confident in how you look - wouldn't you be a bit nervous and apprehensive? You can guess, then, how I felt, knowing that my face wasn't quite right and that it would be the focus of everyone's attention for the next several minutes. However, it had to be done if I wanted to raise the profile of Facial Palsy and encourage people to buy raffle tickets, so I took a deep breath and a gulp of champagne and took to the floor. Whatever I said must have worked, as we ran out of raffle tickets! That's not a bad position to be in, especially as my friend Ro then rattled the collecting tin at the end of the evening, after I had gone home, and proved that the need for loose change is in inverse proportion to the amount of alcohol consumed :-). I went home with a sore head but a happy heart (and £1400 in my bag!), knowing that Facial Palsy UK was going to have a bit of a boost to its bank balance. Thank you to everyone there who helped with that great achievement (and to the kind people who said my speech had really moved them).
And so to Saturday and the beginning of an annual event in my social and racing calendar - the Sodbury Slog. Those amongst you who don't understand the attraction of ploughing through mud, climbing hay bales when there's a perfectly good stile hidden behind them, splashing through thigh-deep muddy water and hauling yourself out with a rope, or running with pounds of claggy mud turning your shoes into Frankenstein's monster's clumpy footwear, will wonder why, oh why, oh why I would want to do this voluntarily. Well, it's because it's the most fun you can have with your clothes on, as far as I'm concerned. It's sociable, I meet up with friends I don't see except at Sodbury, we stay in a lovely hotel, I get to wallow in mud and don't get told off for ruining my clothes - what could be better? Okay, there's a bit of running involved - or, in my case, sliding, falling over and plodding - but it's just a wonderful day. Because the race is always on Remembrance Sunday, we have a bugler playing the Last Post, a two minute silence and a reading of those most poignant lines "At the going down of the sun and in the morning, we will remember them" so I always start the race wiping tears from my face. To me, running through beautiful countryside on a perfect, sunny autumn morning is a perfect way to respect those who gave their futures so that I could have my present.
To anyone who hasn't yet discovered the joys of cross-country running - try it! The worst that will happen is that you will get covered in mud and glaur :-)
Have I converted you yet?
At the beginning of the meal, once everyone was seated, our regional President invited me up to say a few words about Facial Palsy UK....in front of 240 people. Imagine standing up in front of a room with that number of people in it when you feel completely confident in how you look - wouldn't you be a bit nervous and apprehensive? You can guess, then, how I felt, knowing that my face wasn't quite right and that it would be the focus of everyone's attention for the next several minutes. However, it had to be done if I wanted to raise the profile of Facial Palsy and encourage people to buy raffle tickets, so I took a deep breath and a gulp of champagne and took to the floor. Whatever I said must have worked, as we ran out of raffle tickets! That's not a bad position to be in, especially as my friend Ro then rattled the collecting tin at the end of the evening, after I had gone home, and proved that the need for loose change is in inverse proportion to the amount of alcohol consumed :-). I went home with a sore head but a happy heart (and £1400 in my bag!), knowing that Facial Palsy UK was going to have a bit of a boost to its bank balance. Thank you to everyone there who helped with that great achievement (and to the kind people who said my speech had really moved them).
And so to Saturday and the beginning of an annual event in my social and racing calendar - the Sodbury Slog. Those amongst you who don't understand the attraction of ploughing through mud, climbing hay bales when there's a perfectly good stile hidden behind them, splashing through thigh-deep muddy water and hauling yourself out with a rope, or running with pounds of claggy mud turning your shoes into Frankenstein's monster's clumpy footwear, will wonder why, oh why, oh why I would want to do this voluntarily. Well, it's because it's the most fun you can have with your clothes on, as far as I'm concerned. It's sociable, I meet up with friends I don't see except at Sodbury, we stay in a lovely hotel, I get to wallow in mud and don't get told off for ruining my clothes - what could be better? Okay, there's a bit of running involved - or, in my case, sliding, falling over and plodding - but it's just a wonderful day. Because the race is always on Remembrance Sunday, we have a bugler playing the Last Post, a two minute silence and a reading of those most poignant lines "At the going down of the sun and in the morning, we will remember them" so I always start the race wiping tears from my face. To me, running through beautiful countryside on a perfect, sunny autumn morning is a perfect way to respect those who gave their futures so that I could have my present.
To anyone who hasn't yet discovered the joys of cross-country running - try it! The worst that will happen is that you will get covered in mud and glaur :-)
Have I converted you yet?
Thursday, 8 November 2012
Old friends, new charities and same old anxieties!
I have often been struck by the way in which my daughter and her friends, when teenagers, and indeed many teenaged girls, are so much more affectionate and open in their feelings than I remember being when I was at school. Lots of declarations of "Love you" and hugs, kisses and more hugs seem to be the order of the day when greeting each other or saying goodbye nowadays. When I was their age, we didn't even hug each other, let alone give voice to any feelings of love or affection. Why was that? Were we worried that we would be mocked for being open in our feelings? Worried that perhaps our words might be misinterpreted and our sexuality questioned? - this was the 70s, remember, when the common expectation was that everyone was heterosexual and we weren't confident enough to want to be thought of as somehow different? Whatever the reason, we just didn't do anything more openly affectionate than maybe writing "Loadsaluv" in a Christmas or birthday card, as if spelling it in a jokey way meant it couldn't possibly be viewed as anything other than a whimsical, throwaway sign-off.
Interestingly, in recent years when I have met up with, spoken to or been in written contact with my very old school friends ( from my old all girls school), I've found that my closest friends and I often sign off with "Love you", either face-to-face or in emails. Is it because we are more confident now that we can say these things without fear of being mocked or thought of as overly "touchy feely"? Or is it because, being older, we are more aware of the preciousness of good friendships? The kind of friendships formed when you are in your early teens are perhaps particularly special because we were all growing up at the same time, facing the tsunami of puberty, beginning to form our own opinions rather than believe everything our parents do, thinking of our futures and what we wanted from life and making that most tricky of transitions from childhood to young adulthood. Whatever it is, there is some bond there that seems to be pretty much unshakeable, even if we don't see each other for years, sometimes decades and which means that, as soon as we do meet up, the years just roll away and that closeness, that warm support of each other is as strong as ever. Maybe it is even stronger now, as we have all faced our own battles over the years and emerged bruised, a bit fragile but still strong in our friendships and belief that we will continue to be friends.
These feelings all manifested themselves when I met up with 11 of my old school friends a fortnight ago at a small, but perfectly formed, reunion of the class of 1970 - 76 from the Glasgow High School for Girls. We had a huge reunion two years ago, with around 50 of us meeting for a ceilidh, a few meals and a good old blether; it was such fun that we decided that we would try and have a meet-up once a year, even if it were only a few of us. I obviously couldn't make last year's meet-up, so I was particularly keen to go this year. I combined it with a sleepover at Adam's place in Carlisle, so I got to spend some time with him. As usual, I was anxious at the thought of seeing people - only three of my friends from school had seen my new face and, while my head was telling me that it would be fine and that these were all people who had been hugely supportive in their comments on Facebook and in emails to me, my heart was saying "It's going to be horrible, they'll stare at you or if they don't stare at you, the other diners in the restaurant will stare at you". I so wish I could stop these feelings surfacing every time I anticipate social events. I had hoped that, with time and given that my face does look so much better than it did at the beginning, my confidence would have given chase to the worry but it doesn't work like that. I confided in one of my friends, Fi, about how I felt and she understood exactly and, in fact, said that others had been fighting their own battles of one kind or another, so there would be nothing but support and warmth. Of course, she was right. We had a wonderful time and I even felt okay about having my photo taken, perhaps because a couple of glasses of Prosecco relaxed me to the point where my usual fears about being near a camera disappeared.
Strong, feisty, funny, caring and intelligent women - it was wonderful to spend time with this group of friends. We're already planning next year's reunion and thinking big: we're investigating renting a big house/small castle for the weekend so we can really let our hair down and not be constrained by restaurant closing times or last trains.
My trip to Glasgow was sandwiched between visits to Adam. He gave up his bedroom for me, being a dutiful son, so in return I made him and his flatmates a couple of lasagnes, a chicken casserole and a Sunday roast, being a dutiful mum! It was good to see him and spend some time with him. University life seems to suit him.
This weekend it is my favourite race - the Sodbury Slog. It's a cross-country race starting and finishing in Chipping Sodbury and of variable length, depending on which farmers have given permission for their land to be crossed, but normally around 9.6 miles. And muddy - you have no idea how muddy! There will be a stream we have to wade through which, on normal sized people, will be about knee high but on me will be about thigh high, if not higher and which we have to climb out of, hauling on a rope to help us up the slope - that will be quite a test of my dodgy shoulder! It's the most fun you can have with your clothes on and I was so disappointed to miss it last year. Once again, this is another box to be ticked in my return to normal. I've got my usual room in the hotel where a bunch of us always stay the night before and we will take over the local Italian restaurant after the race for lunch. I'm looking forward to it but with my usual sense of gnawing anxiety about how my face will be received. Yes, I know it's silly and that I will be amongst friends, but I just can't help it.
Before that, though, I have my Institute's Regional Annual Dinner at a posh hotel in London. It's a great event and you might remember that last year Neil and I were invited as guests of honour. It was quite a difficult evening for me for the reasons you all know: showing my face when it was so much worse than it is now, still suffering the after-effects of radiotherapy, unable to eat and feeling constantly on edge about how I appeared to people. This year should be so much better, but there's still that unease about my face. This year, however, I have been asked if I would like Facial Palsy UK (the charity I have been involved in setting up) to be the charity we support with our raffle over dinner, so of course I said I would and offered to say a few words about it so that people know what they're actually supporting. We're a little known charity and, let's be honest, not many of us know anything about facial palsy - I certainly didn't before I got it! Spreading the word about the charity and the condition will be invaluable so it's important that I make it personal by talking about what happened to me and how it feels to have FP. So I shall be standing up in front of over 200 people and talking about my experience. It feels a little bit daunting but it's important to do it. In a piece of good timing, there was an article on the BBC website about living with Bell's Palsy, so at least some of the people there tomorrow might know something about some aspects of facial palsy. Did any of you see it?
http://www.bbc.co.uk/news/magazine-20206297 will give you an insight into what it's like. If you look at the photos of the woman who chronicled her recovery (Bell's Palsy is, for the vast majority of people, a temporary condition from which they will make a full recovery), my smile is now at about the stage of her photo on the extreme left of the third row down. However, I started from a much worse position than she did, as my cheek was actually hanging down on the left-hand side, so that helps me see how much improvement I have had. I'll never get back to what I was before but at least you can now see a bit of a smile on the left side of my face.
Next week, we have the press launch of our new charity so look out for coverage in newspapers and magazines after Friday 16th.
Signing off now, with my usual thanks and love to the people who help me get through every day and every week.
Interestingly, in recent years when I have met up with, spoken to or been in written contact with my very old school friends ( from my old all girls school), I've found that my closest friends and I often sign off with "Love you", either face-to-face or in emails. Is it because we are more confident now that we can say these things without fear of being mocked or thought of as overly "touchy feely"? Or is it because, being older, we are more aware of the preciousness of good friendships? The kind of friendships formed when you are in your early teens are perhaps particularly special because we were all growing up at the same time, facing the tsunami of puberty, beginning to form our own opinions rather than believe everything our parents do, thinking of our futures and what we wanted from life and making that most tricky of transitions from childhood to young adulthood. Whatever it is, there is some bond there that seems to be pretty much unshakeable, even if we don't see each other for years, sometimes decades and which means that, as soon as we do meet up, the years just roll away and that closeness, that warm support of each other is as strong as ever. Maybe it is even stronger now, as we have all faced our own battles over the years and emerged bruised, a bit fragile but still strong in our friendships and belief that we will continue to be friends.
These feelings all manifested themselves when I met up with 11 of my old school friends a fortnight ago at a small, but perfectly formed, reunion of the class of 1970 - 76 from the Glasgow High School for Girls. We had a huge reunion two years ago, with around 50 of us meeting for a ceilidh, a few meals and a good old blether; it was such fun that we decided that we would try and have a meet-up once a year, even if it were only a few of us. I obviously couldn't make last year's meet-up, so I was particularly keen to go this year. I combined it with a sleepover at Adam's place in Carlisle, so I got to spend some time with him. As usual, I was anxious at the thought of seeing people - only three of my friends from school had seen my new face and, while my head was telling me that it would be fine and that these were all people who had been hugely supportive in their comments on Facebook and in emails to me, my heart was saying "It's going to be horrible, they'll stare at you or if they don't stare at you, the other diners in the restaurant will stare at you". I so wish I could stop these feelings surfacing every time I anticipate social events. I had hoped that, with time and given that my face does look so much better than it did at the beginning, my confidence would have given chase to the worry but it doesn't work like that. I confided in one of my friends, Fi, about how I felt and she understood exactly and, in fact, said that others had been fighting their own battles of one kind or another, so there would be nothing but support and warmth. Of course, she was right. We had a wonderful time and I even felt okay about having my photo taken, perhaps because a couple of glasses of Prosecco relaxed me to the point where my usual fears about being near a camera disappeared.
Strong, feisty, funny, caring and intelligent women - it was wonderful to spend time with this group of friends. We're already planning next year's reunion and thinking big: we're investigating renting a big house/small castle for the weekend so we can really let our hair down and not be constrained by restaurant closing times or last trains.
My trip to Glasgow was sandwiched between visits to Adam. He gave up his bedroom for me, being a dutiful son, so in return I made him and his flatmates a couple of lasagnes, a chicken casserole and a Sunday roast, being a dutiful mum! It was good to see him and spend some time with him. University life seems to suit him.
This weekend it is my favourite race - the Sodbury Slog. It's a cross-country race starting and finishing in Chipping Sodbury and of variable length, depending on which farmers have given permission for their land to be crossed, but normally around 9.6 miles. And muddy - you have no idea how muddy! There will be a stream we have to wade through which, on normal sized people, will be about knee high but on me will be about thigh high, if not higher and which we have to climb out of, hauling on a rope to help us up the slope - that will be quite a test of my dodgy shoulder! It's the most fun you can have with your clothes on and I was so disappointed to miss it last year. Once again, this is another box to be ticked in my return to normal. I've got my usual room in the hotel where a bunch of us always stay the night before and we will take over the local Italian restaurant after the race for lunch. I'm looking forward to it but with my usual sense of gnawing anxiety about how my face will be received. Yes, I know it's silly and that I will be amongst friends, but I just can't help it.
Before that, though, I have my Institute's Regional Annual Dinner at a posh hotel in London. It's a great event and you might remember that last year Neil and I were invited as guests of honour. It was quite a difficult evening for me for the reasons you all know: showing my face when it was so much worse than it is now, still suffering the after-effects of radiotherapy, unable to eat and feeling constantly on edge about how I appeared to people. This year should be so much better, but there's still that unease about my face. This year, however, I have been asked if I would like Facial Palsy UK (the charity I have been involved in setting up) to be the charity we support with our raffle over dinner, so of course I said I would and offered to say a few words about it so that people know what they're actually supporting. We're a little known charity and, let's be honest, not many of us know anything about facial palsy - I certainly didn't before I got it! Spreading the word about the charity and the condition will be invaluable so it's important that I make it personal by talking about what happened to me and how it feels to have FP. So I shall be standing up in front of over 200 people and talking about my experience. It feels a little bit daunting but it's important to do it. In a piece of good timing, there was an article on the BBC website about living with Bell's Palsy, so at least some of the people there tomorrow might know something about some aspects of facial palsy. Did any of you see it?
http://www.bbc.co.uk/news/magazine-20206297 will give you an insight into what it's like. If you look at the photos of the woman who chronicled her recovery (Bell's Palsy is, for the vast majority of people, a temporary condition from which they will make a full recovery), my smile is now at about the stage of her photo on the extreme left of the third row down. However, I started from a much worse position than she did, as my cheek was actually hanging down on the left-hand side, so that helps me see how much improvement I have had. I'll never get back to what I was before but at least you can now see a bit of a smile on the left side of my face.
Next week, we have the press launch of our new charity so look out for coverage in newspapers and magazines after Friday 16th.
Signing off now, with my usual thanks and love to the people who help me get through every day and every week.
Thursday, 1 November 2012
The one with the check-up, the work and the mud...
Last blog, I spoke of the anxiety I still feel in the week or ten days before my three-monthly oncology check-up at the Marsden. It's the scary thought that, if something has gone wrong in the first week after my check-up, it's had thirteen weeks to get worse, rather than the four weeks when I was on a monthly check-up cycle. I have to remind myself that the doctors, the oncologist, the experts, who make the treatment of this illness their life's focus, do know best and that they wouldn't put me on a three-month cycle if they weren't sure it was the right thing to do. Despite reminding myself of this fact and that I am not a doctor (although, perhaps understandably, I feel a bit of an expert on my condition compared to pretty much everyone I know!), the nerves kick in and I find myself bracing myself for how I will deal with bad news. I hope that, eventually and hopefully soon, I will start to feel less anxious.
And so to the morning of the check-up. Car on auto-pilot, I drove to the hospital, parked up and went in, prepared for my usual nervous wait. Somewhat to my surprise, I was called through early, weighed, and no sooner had I sat down in the consulting room and started reading my book than the consultant came in. Yes, dear reader, I was seen early! It was the top consultant as well, which always makes me feel a bit more reassured - not that I doubt the competence and knowledge of the less senior specialists, but I do seem to derive an extra layer of comfort from the opinion of the woman at the top. She did a thorough physical examination, asked me lots of questions for the multi-paged questionnaire she has to fill in to compile various stats and talked about how I am generally. She seems very pleased with my oncology progress - still in remission, so that makes it 8 months since the PET CT scan and a year since they initially said they were confident I was in remission, although I couldn't quite believe it until the PET scan showed no sign of anything untoward. Funny how I needed the mechanics and scientific objectivity of a piece of machinery before I could quite accept it, isn't it?
After making an appointment for three months' time, I popped my parking ticket into the machine, purse at the ready to feed its hungry metal mouth, only to find that I had been seen so quickly that I was still within the thirty minutes parking grace period! First time I think that has ever happened.
On my way back to Oxted, I called in on some very old friends (as in, I have known them for a long time, not that they are great in years) for tea and a chat (and a chocolate croissant, as it turns out). Their daughter has ME - and I know that one regular reader of this blog, Geves, has a daughter of a similar age who also has this (literally) crippling and debilitating illness - and she, her mum and I spent some time talking about the impact of illness and how to deal with it physically and psychologically. For someone with ME, I think the difficulties are compounded because there is such mixed perceptions of ME. It's clearly a genuine, and often extremely serious, illness but some people still don't believe it really exists, which means firstly that the ill person almost has to defend their tiredness, their nausea, their lack of interest and concentration and secondly that there is less inclination to fund research and give it the attention it deserves. No one queries the existence of cancer, so I didn't have to devote any energy or time to considering whether anyone thought my illness was real or just some psychosomatic, almost "trendy", affectation. How awful to be ill, to be unaware of whether you will get better and to feel that people don't really believe you. I know it's genuine, real and hard to deal with, for the patient and the family.
What else has happened? Well, I have returned to the world of work - I have a 30 day project at a prestigious London Borough, working two or three days a week. This suits me perfectly - I can carry on with my volunteering at Orpheus and still have a day a week at home to keep up with domestic stuff, paperwork, charity stuff for Facial Palsy UK and - dare I say it? - just take it easy. Interestingly, I 'm finding that I have no problem concentrating at work all day and am loving the decision-making, the challenges of work, the social side of the office and using my brain again but find the commuting absolutely exhausting - yet I have a really easy commute! I travel by train to London and then walk for about 15 minutes, so no need to travel on the tube. Yet I find myself drained by the journey - not helped by the fact that, at this time of year, people are beginning the first of their winter colds, so there is lots of coughing and sneezing going on. I also get more than just mildly irritated by the incessant ringing of mobile phones, usually with *zany* ringtones and the incredibly pedestrian nature of their conversations. "I'm on the train" - really? "What are we having for dinner?" -what, you need to know this now? Why can't you just wait till you're home and have a surprise?? Does anyone else find themselves simmering with anger at the constant noise, all exacerbated by the increasingly lengthy announcements by the train guard as we enter and leave every station - or station stop, I should say. "Please take all your belongings with you", "Please mind the gap between the train and the platform", "Please remember to breathe".....aaarrrgggh!! I really should go on that Grumpy Old Women show!
On October 14th, it was our local 10k trail race and I managed to plod around in a reasonably respectable time, splashing through the muddy puddles and having a great time. It's a lovely race, totally off-road and it was a glorious autumn morning, sunny and bright. Best thing - cakes afterwards :-). I have my favourite race in just over a fortnight - the Sodbury Slog. It's always held on Rememberance Sunday and is a fantastic mix of poignant and respectful observation of the two minute silence and a complete and utter mudfest, followed by lunch with fellow mad mudlovers. I missed it last year, obviously, so am very much looking forward to splashing through ditches, hauling myself out of muddy water with the aid of a rope and generally trying not to lose my shoes in the gloopy, sticky mud. Do I hear you mutter that I must be mad? Yep, you're probably right!
I'm going to end this blog entry here, as otherwise I will just continue to ramble. I really need to discipline myself to update this more regularly. Be afraid.....be very afraid....
And so to the morning of the check-up. Car on auto-pilot, I drove to the hospital, parked up and went in, prepared for my usual nervous wait. Somewhat to my surprise, I was called through early, weighed, and no sooner had I sat down in the consulting room and started reading my book than the consultant came in. Yes, dear reader, I was seen early! It was the top consultant as well, which always makes me feel a bit more reassured - not that I doubt the competence and knowledge of the less senior specialists, but I do seem to derive an extra layer of comfort from the opinion of the woman at the top. She did a thorough physical examination, asked me lots of questions for the multi-paged questionnaire she has to fill in to compile various stats and talked about how I am generally. She seems very pleased with my oncology progress - still in remission, so that makes it 8 months since the PET CT scan and a year since they initially said they were confident I was in remission, although I couldn't quite believe it until the PET scan showed no sign of anything untoward. Funny how I needed the mechanics and scientific objectivity of a piece of machinery before I could quite accept it, isn't it?
After making an appointment for three months' time, I popped my parking ticket into the machine, purse at the ready to feed its hungry metal mouth, only to find that I had been seen so quickly that I was still within the thirty minutes parking grace period! First time I think that has ever happened.
On my way back to Oxted, I called in on some very old friends (as in, I have known them for a long time, not that they are great in years) for tea and a chat (and a chocolate croissant, as it turns out). Their daughter has ME - and I know that one regular reader of this blog, Geves, has a daughter of a similar age who also has this (literally) crippling and debilitating illness - and she, her mum and I spent some time talking about the impact of illness and how to deal with it physically and psychologically. For someone with ME, I think the difficulties are compounded because there is such mixed perceptions of ME. It's clearly a genuine, and often extremely serious, illness but some people still don't believe it really exists, which means firstly that the ill person almost has to defend their tiredness, their nausea, their lack of interest and concentration and secondly that there is less inclination to fund research and give it the attention it deserves. No one queries the existence of cancer, so I didn't have to devote any energy or time to considering whether anyone thought my illness was real or just some psychosomatic, almost "trendy", affectation. How awful to be ill, to be unaware of whether you will get better and to feel that people don't really believe you. I know it's genuine, real and hard to deal with, for the patient and the family.
What else has happened? Well, I have returned to the world of work - I have a 30 day project at a prestigious London Borough, working two or three days a week. This suits me perfectly - I can carry on with my volunteering at Orpheus and still have a day a week at home to keep up with domestic stuff, paperwork, charity stuff for Facial Palsy UK and - dare I say it? - just take it easy. Interestingly, I 'm finding that I have no problem concentrating at work all day and am loving the decision-making, the challenges of work, the social side of the office and using my brain again but find the commuting absolutely exhausting - yet I have a really easy commute! I travel by train to London and then walk for about 15 minutes, so no need to travel on the tube. Yet I find myself drained by the journey - not helped by the fact that, at this time of year, people are beginning the first of their winter colds, so there is lots of coughing and sneezing going on. I also get more than just mildly irritated by the incessant ringing of mobile phones, usually with *zany* ringtones and the incredibly pedestrian nature of their conversations. "I'm on the train" - really? "What are we having for dinner?" -what, you need to know this now? Why can't you just wait till you're home and have a surprise?? Does anyone else find themselves simmering with anger at the constant noise, all exacerbated by the increasingly lengthy announcements by the train guard as we enter and leave every station - or station stop, I should say. "Please take all your belongings with you", "Please mind the gap between the train and the platform", "Please remember to breathe".....aaarrrgggh!! I really should go on that Grumpy Old Women show!
On October 14th, it was our local 10k trail race and I managed to plod around in a reasonably respectable time, splashing through the muddy puddles and having a great time. It's a lovely race, totally off-road and it was a glorious autumn morning, sunny and bright. Best thing - cakes afterwards :-). I have my favourite race in just over a fortnight - the Sodbury Slog. It's always held on Rememberance Sunday and is a fantastic mix of poignant and respectful observation of the two minute silence and a complete and utter mudfest, followed by lunch with fellow mad mudlovers. I missed it last year, obviously, so am very much looking forward to splashing through ditches, hauling myself out of muddy water with the aid of a rope and generally trying not to lose my shoes in the gloopy, sticky mud. Do I hear you mutter that I must be mad? Yep, you're probably right!
I'm going to end this blog entry here, as otherwise I will just continue to ramble. I really need to discipline myself to update this more regularly. Be afraid.....be very afraid....
Thursday, 11 October 2012
Does the fear of cancer ever really leave you?
Is it wrong to look at some people and feel simmering resentment that they are squandering their health by smoking, eating too much (and the wrong things), drinking too much, not exercising and so on? And is it wrong to think "But I ate healthily, exercised, didn't drink often, didn't smoke, looked after myself and I still got cancer"?
Well, if it's wrong, I still find myself doing it. I'm not wishing cancer on anyone else - why would I want anyone else to experience the stomach-sinking dread that a cancer diagnosis brings, the painful and harrowing physical side-effects of treatment and the emotional freefall that cancer gifts to you? But oh, sometimes I just want to shake people and say "Don't you realise the risks you are taking with your health?".
I used to feel like this a lot when I was first diagnosed and probably for about a year after, but the feelings have abated - until yesterday, when a friend phoned to tell me that she has just been diagnosed with cancer for the second time. This is a woman who has never smoked or drunk and who has looked after her health as best she can. She was diagnosed with breast cancer five years ago. endured the treatment and was heading towards her five year clear milestone when wallop! she gets a diagnosis of skin cancer. Skin cancer, in a woman who never sunbathes and has always been cautious about exposing her skin to the burning effects of the sun. The sheer injustice of it feels overwhelming for me, so what it must be like for her, I can only guess. This friend was incredibly helpful and supportive to me last year when I was facing my dx and treatment, with all the uncertainties, fears and emotions that it brought me - she was able to speak not only as someone who has dealt with cancer, but also as a radiographer, with professional experience of giving the treatment. I feel such anger that she is having to go through the seemingly endless rounds of hospital visits, appointments, blood tests, scans, whatever treatment is considered best for her. Yes, she is feisty and will face this diagnosis with courage, humour and determination, but the sense of sheer unfairness is hard to shake off. It's her battle, but in a way it's my battle too, and it's the battle of everyone who has had a cancer dx. We bind together like some unregulated, unchartered army, shaking our helpless fists at this evil invader and giving up our bodies, our health and our autonomy to become the battleground on which the fight is played out between the medics and cancer.
I ask again - once you have had a cancer dx, do you ever really forget about it? Or is it there, lurking, making itself comfortable in the deepest recesses of your psyche, looking for that little chink in your equilibrium to squeeze itself back to the front of your consciousness, so that it once more becomes something that covers everything you do, everything you say, everything you feel with a patina of anxiety and fear?
Does this make me more anxious about my check-up next week? Yes, but I am trying to remain sensible and calm, reminding myself that each cancer is different, my cancer was in a totally different part of the body and a totally different kind, that my general health is good and other comforting, pat-yourself-down phrases. In the meantime, I just have to carry on as normal - much the same as my friend is trying to do.
Well, if it's wrong, I still find myself doing it. I'm not wishing cancer on anyone else - why would I want anyone else to experience the stomach-sinking dread that a cancer diagnosis brings, the painful and harrowing physical side-effects of treatment and the emotional freefall that cancer gifts to you? But oh, sometimes I just want to shake people and say "Don't you realise the risks you are taking with your health?".
I used to feel like this a lot when I was first diagnosed and probably for about a year after, but the feelings have abated - until yesterday, when a friend phoned to tell me that she has just been diagnosed with cancer for the second time. This is a woman who has never smoked or drunk and who has looked after her health as best she can. She was diagnosed with breast cancer five years ago. endured the treatment and was heading towards her five year clear milestone when wallop! she gets a diagnosis of skin cancer. Skin cancer, in a woman who never sunbathes and has always been cautious about exposing her skin to the burning effects of the sun. The sheer injustice of it feels overwhelming for me, so what it must be like for her, I can only guess. This friend was incredibly helpful and supportive to me last year when I was facing my dx and treatment, with all the uncertainties, fears and emotions that it brought me - she was able to speak not only as someone who has dealt with cancer, but also as a radiographer, with professional experience of giving the treatment. I feel such anger that she is having to go through the seemingly endless rounds of hospital visits, appointments, blood tests, scans, whatever treatment is considered best for her. Yes, she is feisty and will face this diagnosis with courage, humour and determination, but the sense of sheer unfairness is hard to shake off. It's her battle, but in a way it's my battle too, and it's the battle of everyone who has had a cancer dx. We bind together like some unregulated, unchartered army, shaking our helpless fists at this evil invader and giving up our bodies, our health and our autonomy to become the battleground on which the fight is played out between the medics and cancer.
I ask again - once you have had a cancer dx, do you ever really forget about it? Or is it there, lurking, making itself comfortable in the deepest recesses of your psyche, looking for that little chink in your equilibrium to squeeze itself back to the front of your consciousness, so that it once more becomes something that covers everything you do, everything you say, everything you feel with a patina of anxiety and fear?
Does this make me more anxious about my check-up next week? Yes, but I am trying to remain sensible and calm, reminding myself that each cancer is different, my cancer was in a totally different part of the body and a totally different kind, that my general health is good and other comforting, pat-yourself-down phrases. In the meantime, I just have to carry on as normal - much the same as my friend is trying to do.
Friday, 5 October 2012
The constants in my life
Flashback - September 2011. I am one week post-radiotherapy and sinking to a new low, both physically and mentally. I can't eat without being sick, my neck is bleeding, my mouth is painfully dry, I feel sore, I am exhausted. What better thing to do, then, than go to a black tie dinner? It sounds mad, but this was no ordinary black tie dinner - this was the CIPFA South East Summer School, an event so dear to my heart and where I have made some of my closest friends, so not going wasn't an option, really. I blogged abbut it at the time, about how bittersweet it was to be there, feeling lousy, looking at my worst (although gratifyingly skinny, for the first time in my adult life!) but surrounded by the love and support of some wonderful people.
Come back now to 2012 and this year's Summer School, where I was able to play a full part - I had energy, I had enthusiasm and I felt like a different person (albeit not quite as skinny as last year!). I can't describe just how wonderful it felt to be part of it all again, not sitting as an invalid, unable to do anything, not even to eat. I might not have stayed up as late as I would have BC, but I'm still recovering fitness and stamina, so that ought to improve. For me, one of the major things is that I didn't feel as self-conscious about my face as I did last year, or even a few months or weeks ago. I confess to a touch of nervousness on the eve and morning of my departure for Summer School, but - as ever - my lovely husband told me I look great and that there is no need to worry. Of course, he was right. I genuinely don't look nearly as obviously different as I used to (although it's noticeable when I talk or smile an open-mouthed smile) and, in any case, I was going to be with friends. Most of the delegates at Summer School were people I knew and any newcomers would hopefully be as accepting as my friends were.
And so it proved to be. We had chosen Facial Palsy UK (the new, about-to-be-launched charity I am involved with, providing support to people with facial palsy) as the charity we would support during summer school. This is a practice we introduced a few years ago and it has allowed us to support a range of charities to the tune of several hundred pounds each year. I made a brief speech about the charity and why it was so important for people like me, with our wonky faces, difficulties in eating, drinking and speaking and our inability often to express emotions and take a full part in social interaction. I feel so honoured that, over the course of two days and with a small delegate group (the recession bites again!), we managed to raise over £400 - a magnificent amount, and I am so grateful for the generosity of our delegates.
One of the challenges for a fledgling charity is that no one really knows about it, so we have to publicise it at every opportunity. A couple of months ago, I emailed the Chief Executive of the hospital where I received my diagnosis, had my surgery, physio, speech therapy, eye operation etc etc to say how impressed I was with the treatment and care I had. To cut a long story short, I was invited to be interviewed for a BBC South East local affairs programme, to be broadcast either later this month or in October. After exchanging emails with the journalist, we arranged a date for me to be interviewed at the hospital. Who knows how much of what I said will end up on the cutting-room floor, but I managed to get in some mentions of Facial Palsy UK, which I hope will help raise the profile of our charity. For those of you who can receive BBC South East, the programme is called "Inside Out" and the feature is around cancer care in the area.
Neil and I had 9 days in Spain, at the end of September. We had intended to do lots of walking, climbing and generally be very active, but in the end, we did far less than expected and just relaxed instead. I know, hold the front page! We did still manage a 36 km bike ride and a couple of long walks, but mostly we pottered around, enjoying the pueblos blancos, the tapas and the manana approach to life. We ended with two days in Seville, arriving just as they had their first rain following 7 months of dry sunshine. It wasn't just any old rain, it was torrential rain - we had to go back to our (very charming, quaint) hotel twice on the first day to change out of our sodden clothes and warm up in the bath and shower! Still, we managed to see most of what we wanted to see, including a flamenco show. Ever been to one? The dancing was what I expected, but the singing - oh my! That was a bit unexpected..very guttural, no obvious link between the beat of the guitarist, the singer and the hand-clapping and very LOUD - which I suppose it has to be to be heard over the stamping feet of the dancers! We really enjoyed it, after the initial surprise at the vocal element.
And so back to Britain and more rain...at least now we are well and truly in autumn now, I can wear boots at every opportunity. This, to my mind, is one of the few good things about living in a temperate climate where the seasons change. I get to wear boots.
This week has included an appointment with my speech therapist. She has given me permission to stop zapping - yay! No more electrodes and shocks for an hour every evening. Instead, I have more massage exercises and a specific exercise to help me with my "whistle" - pursing the lips. I mentioned to the therapist that I hated not being able to kiss properly - when your mouth doesn't purse properly (that sounds a bit weird!), effectively you become a passive participant when someone kisses your mouth. Also, it is harder to spit (I'm not a gobber, but you do need to spit when you clean your teeth and I find it quite difficult!) and, as I discovered at Summer School, I can't blow bubbles with a bubble wand either (it was all in the cause of our group presentation, honest!). It's a reminder that things still aren't back to how they were BC and they're never going to be. However, I have to continue to work at what I can to get maximum improvement.
And so to today, and my first visit to the gym in several weeks. I really need to start being more disciplined again about my exercise regime, especially as the weather is now of the kind that is likely to pull my mood down. I am not good with rainy, overcast, dull days and it looks as if we are in for quite a lot of them. I was disappointed not to get a place in the ballot for the London Marathon next year (again. I never have any luck in the ballot) as I was hoping to run for Facial Palsy UK. I think I will support instead, although some people are trying to persuade me to run Brighton marathon instead. I think I might pass on that one!
Check-up at the Marsden in two weeks and already I can feel some slight anxiety, which I know will increase as I get closer to my appointment. Three months feels like an awful long time for things to go wrong, but I need to try and be more trusting in the medics and their judgement that I don't need to be seen more often. I do trust them, but these niggling, anxious little voices just keep whispering in my ear and it's not always easy to silence them.
To end on a happy note - last night, I attended the book launch for "Grace Under Pressure", an account of how running helped Sophie Walker deal with her daughter's Aspergers and what it's like to live with a child with Aspergers, with all the challenges, difficulties and delights it brings. I was Sophie's babysitter when I was a student and her parents and younger sisters were both there (I babysat one of her sisters too) - and, in one of those weird coincidences, I ended up working for the man who is now Sophie's husband a few years ago, without knowing anything about their relationship until it emerged during a conversation worthy of a Ionesco play!. It was great to meet up with her family again. Although I saw her parents, Dave and Lesley, a couple of years ago, we hadn't met since my somewhat tumultuous 2011 and I hadn't seen her younger sister, Cathy, for nigh on 30 years, although we are in touch through Facebook. I felt a warm glow, talking to them all (and no, don't blame it on the wine, because I was drinking water!).
Family, friends, exercise - three constants in my life.
Come back now to 2012 and this year's Summer School, where I was able to play a full part - I had energy, I had enthusiasm and I felt like a different person (albeit not quite as skinny as last year!). I can't describe just how wonderful it felt to be part of it all again, not sitting as an invalid, unable to do anything, not even to eat. I might not have stayed up as late as I would have BC, but I'm still recovering fitness and stamina, so that ought to improve. For me, one of the major things is that I didn't feel as self-conscious about my face as I did last year, or even a few months or weeks ago. I confess to a touch of nervousness on the eve and morning of my departure for Summer School, but - as ever - my lovely husband told me I look great and that there is no need to worry. Of course, he was right. I genuinely don't look nearly as obviously different as I used to (although it's noticeable when I talk or smile an open-mouthed smile) and, in any case, I was going to be with friends. Most of the delegates at Summer School were people I knew and any newcomers would hopefully be as accepting as my friends were.
And so it proved to be. We had chosen Facial Palsy UK (the new, about-to-be-launched charity I am involved with, providing support to people with facial palsy) as the charity we would support during summer school. This is a practice we introduced a few years ago and it has allowed us to support a range of charities to the tune of several hundred pounds each year. I made a brief speech about the charity and why it was so important for people like me, with our wonky faces, difficulties in eating, drinking and speaking and our inability often to express emotions and take a full part in social interaction. I feel so honoured that, over the course of two days and with a small delegate group (the recession bites again!), we managed to raise over £400 - a magnificent amount, and I am so grateful for the generosity of our delegates.
One of the challenges for a fledgling charity is that no one really knows about it, so we have to publicise it at every opportunity. A couple of months ago, I emailed the Chief Executive of the hospital where I received my diagnosis, had my surgery, physio, speech therapy, eye operation etc etc to say how impressed I was with the treatment and care I had. To cut a long story short, I was invited to be interviewed for a BBC South East local affairs programme, to be broadcast either later this month or in October. After exchanging emails with the journalist, we arranged a date for me to be interviewed at the hospital. Who knows how much of what I said will end up on the cutting-room floor, but I managed to get in some mentions of Facial Palsy UK, which I hope will help raise the profile of our charity. For those of you who can receive BBC South East, the programme is called "Inside Out" and the feature is around cancer care in the area.
Neil and I had 9 days in Spain, at the end of September. We had intended to do lots of walking, climbing and generally be very active, but in the end, we did far less than expected and just relaxed instead. I know, hold the front page! We did still manage a 36 km bike ride and a couple of long walks, but mostly we pottered around, enjoying the pueblos blancos, the tapas and the manana approach to life. We ended with two days in Seville, arriving just as they had their first rain following 7 months of dry sunshine. It wasn't just any old rain, it was torrential rain - we had to go back to our (very charming, quaint) hotel twice on the first day to change out of our sodden clothes and warm up in the bath and shower! Still, we managed to see most of what we wanted to see, including a flamenco show. Ever been to one? The dancing was what I expected, but the singing - oh my! That was a bit unexpected..very guttural, no obvious link between the beat of the guitarist, the singer and the hand-clapping and very LOUD - which I suppose it has to be to be heard over the stamping feet of the dancers! We really enjoyed it, after the initial surprise at the vocal element.
And so back to Britain and more rain...at least now we are well and truly in autumn now, I can wear boots at every opportunity. This, to my mind, is one of the few good things about living in a temperate climate where the seasons change. I get to wear boots.
This week has included an appointment with my speech therapist. She has given me permission to stop zapping - yay! No more electrodes and shocks for an hour every evening. Instead, I have more massage exercises and a specific exercise to help me with my "whistle" - pursing the lips. I mentioned to the therapist that I hated not being able to kiss properly - when your mouth doesn't purse properly (that sounds a bit weird!), effectively you become a passive participant when someone kisses your mouth. Also, it is harder to spit (I'm not a gobber, but you do need to spit when you clean your teeth and I find it quite difficult!) and, as I discovered at Summer School, I can't blow bubbles with a bubble wand either (it was all in the cause of our group presentation, honest!). It's a reminder that things still aren't back to how they were BC and they're never going to be. However, I have to continue to work at what I can to get maximum improvement.
And so to today, and my first visit to the gym in several weeks. I really need to start being more disciplined again about my exercise regime, especially as the weather is now of the kind that is likely to pull my mood down. I am not good with rainy, overcast, dull days and it looks as if we are in for quite a lot of them. I was disappointed not to get a place in the ballot for the London Marathon next year (again. I never have any luck in the ballot) as I was hoping to run for Facial Palsy UK. I think I will support instead, although some people are trying to persuade me to run Brighton marathon instead. I think I might pass on that one!
Check-up at the Marsden in two weeks and already I can feel some slight anxiety, which I know will increase as I get closer to my appointment. Three months feels like an awful long time for things to go wrong, but I need to try and be more trusting in the medics and their judgement that I don't need to be seen more often. I do trust them, but these niggling, anxious little voices just keep whispering in my ear and it's not always easy to silence them.
To end on a happy note - last night, I attended the book launch for "Grace Under Pressure", an account of how running helped Sophie Walker deal with her daughter's Aspergers and what it's like to live with a child with Aspergers, with all the challenges, difficulties and delights it brings. I was Sophie's babysitter when I was a student and her parents and younger sisters were both there (I babysat one of her sisters too) - and, in one of those weird coincidences, I ended up working for the man who is now Sophie's husband a few years ago, without knowing anything about their relationship until it emerged during a conversation worthy of a Ionesco play!. It was great to meet up with her family again. Although I saw her parents, Dave and Lesley, a couple of years ago, we hadn't met since my somewhat tumultuous 2011 and I hadn't seen her younger sister, Cathy, for nigh on 30 years, although we are in touch through Facebook. I felt a warm glow, talking to them all (and no, don't blame it on the wine, because I was drinking water!).
Family, friends, exercise - three constants in my life.
Tuesday, 11 September 2012
On birthdays, Paralympians and ordinary things...
How do you celebrate your birthday when the previous year, you wondered if you would even still be alive to mark the occasion? Without wishing to sound too melodramatic, it is true that, for large parts of 2011, I wasn't sure if I would be around in a year's time and couldn't visualise anything after Christmas 2011. Now that my planning horizons are slowly extending, I am beginning, in a very small way, to think that maybe, just maybe, I can look further ahead than the next three-monthly check up.
On my birthday last year, I was on the descent towards my lowest point, both physically and emotionally. I remember feeling that I was surrounded by love and good wishes, with cards galore and very generous presents. I know that I was extremely tired and unable to go out to do anything to celebrate. Our good friends came round with a birthday cake, baked by Sally. I managed two mouthfuls before promptly (and painfully) bringing them back up. This is no reflection on the cake, but on the difficulties I was having at the time eating and keeping food down.
Fast forward a year and it's a different world. Birthday celebrations started the day before, with a trip to London with Amy. We spent hours in Oxford Street, shopping for clothes, then lunching before going to a matinee performance of Blood Brothers as my birthday present from her. I remember Adam going to see this when he was at school and he had thoroughly enjoyed it, so my expectations were high. I wasn't disappointed, although I think I got more out of it than Amy did! I just love musical theatre - there's something about the smell and atmosphere in any theatre, no matter its size or age, that makes me a little bit giddy. I think that this year I have been to the theatre more often than any other year of my life; last week's outing is the 6th time I have been to a performance this year.
I had texted my old uni friend, Fin, to see if he was able to meet up for a quick drink after the performance and luckily he was free, so we enjoyed some rather lovely champagne (thanks, Fin!) as an early birthday treat. Champagne (or Cava, or Prosecco) is still the only alcoholic drink I can in any way tolerate and enjoy, so it was a real treat for me.
And so to Friday, my birthday. Weeks, or even months, ago, when Neil asked what I wanted to do for my birthday, I decided that I wanted to go to the Paralympics. So that is what we did - the tickets had been pinned up on the notice-board in the kitchen for weeks, along with the travel-cards (how generous of London 2012 to provide travel-cards!) and I had stockpiled union flags, union flags on sticks to wave, headbands with union flags, union flag hats and - piece de resistance - a glittery union flag face tattoo! Oh yes, we were going to be exuberantly patriotic!!
What can I say about the day? We have been watching the Paralympics with increasing awe and sense of humility, after having watched as much of the main Olympics as we could. To be there, in the Olympic Park and then the Stadium was the most incredibly exciting experience. It's a magnificent structure, for a start - seeing it on television doesn't prepare you for the sense of wonder you feel when you walk into the Park and see that incredible stadium rising from the ground. To be in there, with the cauldron blazing, a real buzz of excitement all around and then to see these amazing athletes give their all made the hairs on the back of my neck stand up. I can think of few things more moving than seeing the determination of athletes who have not only dedicated themselves to training to become the best in the world, but who have done this while dealing with an impairment which has disabled them. I am finding it hard to think of the right words to describe how I felt when I watched these sportsmen and women. I just know that going to the Paralympics, with the three people I love most in the world, was the perfect way for me to celebrate being alive.
Okay, enough of the melodrama! What happened next? Well, it was time to take Adam back to university and see just what kind of accommodation he had sorted out for himself (he and the two girls he is sharing with had organised it all before the end of term and we hadn't had any involvement at all). With the memory of the shabby, neglected and insecure house in which Amy spent her second year in my mind, I was prepared to find it a bit on the run-down side of respectable. We were very pleasantly surprised to find that they have managed to get themselves a very nice flat, beautifully furnished and decorated, with very friendly landlords and everything they need (including a dishwasher - blimey!). I remember when we dropped Amy off at her house that I just burst into tears when we left, thinking of her having to live in what seemed to me a lot like a hovel, so I was absolutely delighted that Adam is living in such a nice place. They even have a balcony (tiny!) and two huge sofas which I am sure are plenty big enough for me to sleep on (hint, hint...). We had been going to take Adam with us to Glasgow to visit my mum, but as one of his flatmates was at the flat, we said to him to stay and settle in. Neil and I drove off to Glasgow to spend the afternoon with my mum.
What can I say about that? Well, we all know that dementia is a cruel illness. It takes away the person you know and leaves someone who looks like them. While mum has moments of lucidity, much of the time she is talking about a landscape which bears no relation to reality. Apparently she works at the home where she lives and shares a room with a woman who is 200 years old. She wouldn't have it that it is physically not possible to be 200 years old, but eventually grudgingly conceded that maybe she was only 160! There are flashes of the old mum still there, and she seemed to save her moments of clarity for when she was talking to Neil on his own, when I was out of the room for a few moments, which makes me wonder whether she is more together than she seems and is exaggerating for my benefit - who knows? There's no doubt that she has dementia and the path she is following is unsteady and unchartered, for us at any rate. I managed to establish that she had received the birthday presents I had left for her on a previous visit - despite her protestations to the contrary. All the items were hanging up in her wardrobe or on her shelf, so that was one mystery solved at any rate.
Neil and I then went back down to Cumbria and spent a couple of nights in the Lakes, staying in a bed and breakfast on a farm near Derwent Water. We did some walking on Sunday - can't remember the name of the hills we climbed but we spent a total of about six and a half hours walking at a reasonably steady pace. It was good to be out and exercising in the open air, watching the fell-runners (thin as whippets!) taking part in a local race.
And so back home yesterday. Neil and Amy are both at work today and I have been catching up on things for Facial Palsy UK (coming live to a charity box near you!) and doing the food shopping, laundry etc.
My life may seem somewhat mundane but you know what? That suits me just fine! All the time I can do ordinary things, the things we all take for granted, it means I am doing okay. It means I have energy and stamina. It means I have an interest in things. It means I can see a tomorrow.
On my birthday last year, I was on the descent towards my lowest point, both physically and emotionally. I remember feeling that I was surrounded by love and good wishes, with cards galore and very generous presents. I know that I was extremely tired and unable to go out to do anything to celebrate. Our good friends came round with a birthday cake, baked by Sally. I managed two mouthfuls before promptly (and painfully) bringing them back up. This is no reflection on the cake, but on the difficulties I was having at the time eating and keeping food down.
Fast forward a year and it's a different world. Birthday celebrations started the day before, with a trip to London with Amy. We spent hours in Oxford Street, shopping for clothes, then lunching before going to a matinee performance of Blood Brothers as my birthday present from her. I remember Adam going to see this when he was at school and he had thoroughly enjoyed it, so my expectations were high. I wasn't disappointed, although I think I got more out of it than Amy did! I just love musical theatre - there's something about the smell and atmosphere in any theatre, no matter its size or age, that makes me a little bit giddy. I think that this year I have been to the theatre more often than any other year of my life; last week's outing is the 6th time I have been to a performance this year.
I had texted my old uni friend, Fin, to see if he was able to meet up for a quick drink after the performance and luckily he was free, so we enjoyed some rather lovely champagne (thanks, Fin!) as an early birthday treat. Champagne (or Cava, or Prosecco) is still the only alcoholic drink I can in any way tolerate and enjoy, so it was a real treat for me.
And so to Friday, my birthday. Weeks, or even months, ago, when Neil asked what I wanted to do for my birthday, I decided that I wanted to go to the Paralympics. So that is what we did - the tickets had been pinned up on the notice-board in the kitchen for weeks, along with the travel-cards (how generous of London 2012 to provide travel-cards!) and I had stockpiled union flags, union flags on sticks to wave, headbands with union flags, union flag hats and - piece de resistance - a glittery union flag face tattoo! Oh yes, we were going to be exuberantly patriotic!!
What can I say about the day? We have been watching the Paralympics with increasing awe and sense of humility, after having watched as much of the main Olympics as we could. To be there, in the Olympic Park and then the Stadium was the most incredibly exciting experience. It's a magnificent structure, for a start - seeing it on television doesn't prepare you for the sense of wonder you feel when you walk into the Park and see that incredible stadium rising from the ground. To be in there, with the cauldron blazing, a real buzz of excitement all around and then to see these amazing athletes give their all made the hairs on the back of my neck stand up. I can think of few things more moving than seeing the determination of athletes who have not only dedicated themselves to training to become the best in the world, but who have done this while dealing with an impairment which has disabled them. I am finding it hard to think of the right words to describe how I felt when I watched these sportsmen and women. I just know that going to the Paralympics, with the three people I love most in the world, was the perfect way for me to celebrate being alive.
Okay, enough of the melodrama! What happened next? Well, it was time to take Adam back to university and see just what kind of accommodation he had sorted out for himself (he and the two girls he is sharing with had organised it all before the end of term and we hadn't had any involvement at all). With the memory of the shabby, neglected and insecure house in which Amy spent her second year in my mind, I was prepared to find it a bit on the run-down side of respectable. We were very pleasantly surprised to find that they have managed to get themselves a very nice flat, beautifully furnished and decorated, with very friendly landlords and everything they need (including a dishwasher - blimey!). I remember when we dropped Amy off at her house that I just burst into tears when we left, thinking of her having to live in what seemed to me a lot like a hovel, so I was absolutely delighted that Adam is living in such a nice place. They even have a balcony (tiny!) and two huge sofas which I am sure are plenty big enough for me to sleep on (hint, hint...). We had been going to take Adam with us to Glasgow to visit my mum, but as one of his flatmates was at the flat, we said to him to stay and settle in. Neil and I drove off to Glasgow to spend the afternoon with my mum.
What can I say about that? Well, we all know that dementia is a cruel illness. It takes away the person you know and leaves someone who looks like them. While mum has moments of lucidity, much of the time she is talking about a landscape which bears no relation to reality. Apparently she works at the home where she lives and shares a room with a woman who is 200 years old. She wouldn't have it that it is physically not possible to be 200 years old, but eventually grudgingly conceded that maybe she was only 160! There are flashes of the old mum still there, and she seemed to save her moments of clarity for when she was talking to Neil on his own, when I was out of the room for a few moments, which makes me wonder whether she is more together than she seems and is exaggerating for my benefit - who knows? There's no doubt that she has dementia and the path she is following is unsteady and unchartered, for us at any rate. I managed to establish that she had received the birthday presents I had left for her on a previous visit - despite her protestations to the contrary. All the items were hanging up in her wardrobe or on her shelf, so that was one mystery solved at any rate.
Neil and I then went back down to Cumbria and spent a couple of nights in the Lakes, staying in a bed and breakfast on a farm near Derwent Water. We did some walking on Sunday - can't remember the name of the hills we climbed but we spent a total of about six and a half hours walking at a reasonably steady pace. It was good to be out and exercising in the open air, watching the fell-runners (thin as whippets!) taking part in a local race.
And so back home yesterday. Neil and Amy are both at work today and I have been catching up on things for Facial Palsy UK (coming live to a charity box near you!) and doing the food shopping, laundry etc.
My life may seem somewhat mundane but you know what? That suits me just fine! All the time I can do ordinary things, the things we all take for granted, it means I am doing okay. It means I have energy and stamina. It means I have an interest in things. It means I can see a tomorrow.
Wednesday, 5 September 2012
One year on....
Tomorrow, it will be exactly a year since my last radiotherapy session. The timing was both good and bad: I finished treatment the day before my birthday this was good, as it meant I didn't have a trip to hospital on the day itself, but bad because by this stage in my treatment, I was feeling pretty dire and didn't have the energy, inclination or appetite (either physical or emotional) to enjoy the day!
And now? Well, what a difference a year makes, truly. I've had no further treatment since my last r/t session and all my check-ups since February, when I was told that I was in remission, have confirmed that I remain so. After a continuing dip in my health following the end of r/t (all to be expected and very normal), I have slowly regained strength, both physically and mentally. While I don't think I am yet back at the levels of stamina - again, both physical and mental - as I was before I became ill, I am very much on the way. A normal week for me now will include three or four sessions at the gym, at least one run outside of these sessions, a day volunteering at Orpheus, work for Facial Palsy UK and the normal demands of running a home - I don't think that's too bad, given where I was a few months ago.
Yesterday, I had my second session of Botox around my mouth. This helps relax the over-compensating nerves/muscles and improves symmetry of my smile. Finally, when I do an open-mouth smile, you can see some of my teeth on the left side of my face! They have been hidden from view for over a year, really, so it's a very visible sign of improvement that I can now glimpse them again. One of the risks for people with facial palsy is dental problems, because of the difficulty in keeping the teeth clean in a mouth that doesn't work properly - this risk is exacerbated for me because of having had radiotherapy, which weakens the teeth - so I am very diligent in my teeth cleaning and I am pleased to say that, despite having been hidden from daylight for so long, my newly exposed teeth look pretty good! <gleam>
During my talk with the plastic surgeon yesterday, we once more discussed the likelihood of surgery to my face next year and I think we are both agreed that if I continue at my current rate of progress, the chances are that the original surgery he was thinking of will have such a marginal effect that it won't justify the trauma and risk. He says that I am making good progress, which is encouraging because sometimes, when I have my little dark nights of the soul and wonder what the point is in doing all these facial exercises and zapping my chin every day with my little trophic stimulator, I need to remember that nerve recovery in the face is notoriously slow and that improvements will be microscopic but cumulative. My surgeon showed me photos yesterday of how I looked when I had my first consultation with him, in October last year, and I was surprised by the difference. Perhaps I had blanked out just how bad my face looked when my palsy was at its worst - and of course, last October I was at my lowest ebb both physically and mentally, which would possibly have manifested itself in how I presented myself to be photographed. So yes, it is worth continuing with my regime because it is making a difference, albeit slowly.
I do still have these periods where I feel down about what's happened and I expect this will continue for some time, but they seem to be getting more infrequent and I have good coping strategies (normally they involve putting on my running gear and getting out on the Downs!). I am still at the stage where any twinge or unusual ache makes me worry that cancer has decided to pay me another visit, but I try to be rational and sensible about it, rather than go racing off to the GP with every ache or pain! I had my routine mammogram last week and I am reminding myself that any woman would be anxious about the results, not just me! I was a bit surprised that the fact I have had two PET CT scans in the past year didn't negate the need for a mammogram, but I assume that it's a different examination looking for different things.
So, what am I doing to mark the 1 year anniversary? My mask, which I had to wear every day for my radiotherapy and which is a ghoulish reminder of my treatment, has for some months been relegated to our basement. To those visitors who were forced to look at it, when I would present it with a dramatic flourish, I apologise. Clearly I was just trying to get some extra sympathy :-). Now I have some distance, both temporally and emotionally, between the treatment and today, I don't have to demonstrate or explain what happened quite so much. This is good. It means I have stopped dwelling on it. Tomorrow, I am going to Oxford Street with Amy to do some shopping and then she is taking me to see the matinee performance of Blood Brothers, which I have been wanting to see for ages - when I think of a year ago, and how genuinely ill and (a)pathetic I was, the prospect of spending a day in London would have been unimaginable.
On Friday, we are going en famille to the Paralympics - we have tickets for the evening athletics session in the Stadium and we are all desperately excited about it. I can think of no better way to spend my birthday than with the people I love most in the world, watching the amazing achievements of athletes who have worked to become the best in the world while dealing with whatever disability life has given them - how humbling and awe-inspiring are they?
Thank you for reading :-D
And now? Well, what a difference a year makes, truly. I've had no further treatment since my last r/t session and all my check-ups since February, when I was told that I was in remission, have confirmed that I remain so. After a continuing dip in my health following the end of r/t (all to be expected and very normal), I have slowly regained strength, both physically and mentally. While I don't think I am yet back at the levels of stamina - again, both physical and mental - as I was before I became ill, I am very much on the way. A normal week for me now will include three or four sessions at the gym, at least one run outside of these sessions, a day volunteering at Orpheus, work for Facial Palsy UK and the normal demands of running a home - I don't think that's too bad, given where I was a few months ago.
Yesterday, I had my second session of Botox around my mouth. This helps relax the over-compensating nerves/muscles and improves symmetry of my smile. Finally, when I do an open-mouth smile, you can see some of my teeth on the left side of my face! They have been hidden from view for over a year, really, so it's a very visible sign of improvement that I can now glimpse them again. One of the risks for people with facial palsy is dental problems, because of the difficulty in keeping the teeth clean in a mouth that doesn't work properly - this risk is exacerbated for me because of having had radiotherapy, which weakens the teeth - so I am very diligent in my teeth cleaning and I am pleased to say that, despite having been hidden from daylight for so long, my newly exposed teeth look pretty good! <gleam>
During my talk with the plastic surgeon yesterday, we once more discussed the likelihood of surgery to my face next year and I think we are both agreed that if I continue at my current rate of progress, the chances are that the original surgery he was thinking of will have such a marginal effect that it won't justify the trauma and risk. He says that I am making good progress, which is encouraging because sometimes, when I have my little dark nights of the soul and wonder what the point is in doing all these facial exercises and zapping my chin every day with my little trophic stimulator, I need to remember that nerve recovery in the face is notoriously slow and that improvements will be microscopic but cumulative. My surgeon showed me photos yesterday of how I looked when I had my first consultation with him, in October last year, and I was surprised by the difference. Perhaps I had blanked out just how bad my face looked when my palsy was at its worst - and of course, last October I was at my lowest ebb both physically and mentally, which would possibly have manifested itself in how I presented myself to be photographed. So yes, it is worth continuing with my regime because it is making a difference, albeit slowly.
I do still have these periods where I feel down about what's happened and I expect this will continue for some time, but they seem to be getting more infrequent and I have good coping strategies (normally they involve putting on my running gear and getting out on the Downs!). I am still at the stage where any twinge or unusual ache makes me worry that cancer has decided to pay me another visit, but I try to be rational and sensible about it, rather than go racing off to the GP with every ache or pain! I had my routine mammogram last week and I am reminding myself that any woman would be anxious about the results, not just me! I was a bit surprised that the fact I have had two PET CT scans in the past year didn't negate the need for a mammogram, but I assume that it's a different examination looking for different things.
So, what am I doing to mark the 1 year anniversary? My mask, which I had to wear every day for my radiotherapy and which is a ghoulish reminder of my treatment, has for some months been relegated to our basement. To those visitors who were forced to look at it, when I would present it with a dramatic flourish, I apologise. Clearly I was just trying to get some extra sympathy :-). Now I have some distance, both temporally and emotionally, between the treatment and today, I don't have to demonstrate or explain what happened quite so much. This is good. It means I have stopped dwelling on it. Tomorrow, I am going to Oxford Street with Amy to do some shopping and then she is taking me to see the matinee performance of Blood Brothers, which I have been wanting to see for ages - when I think of a year ago, and how genuinely ill and (a)pathetic I was, the prospect of spending a day in London would have been unimaginable.
On Friday, we are going en famille to the Paralympics - we have tickets for the evening athletics session in the Stadium and we are all desperately excited about it. I can think of no better way to spend my birthday than with the people I love most in the world, watching the amazing achievements of athletes who have worked to become the best in the world while dealing with whatever disability life has given them - how humbling and awe-inspiring are they?
Thank you for reading :-D
Saturday, 28 July 2012
It's hit the shelves!
Very quick update - you remember I have hinted at a secret I couldn't tell you? Well, I can tell you now (if you haven't already read it on Facebook!). I am featured in an article in Prima magazine, the September issue (which is on the shelves now). I wrote to them and asked if they would run a feature on facial palsy and they asked me to write it - fee being paid to Facial Palsy UK charity - and sent a photographer round and everything! It's been lightly edited to suit their house-style but remains pretty faithful to how I wrote it.
I am so excited! Anything that raises awareness of facial palsy has got to be good news!
Rush out and buy it, folks!!
I am so excited! Anything that raises awareness of facial palsy has got to be good news!
Rush out and buy it, folks!!
Thursday, 19 July 2012
It's going to be an eye-opener....literally!
Quick update to share some breaking news with you all - you may remember that, during my original surgery in May 2011, the outer corner of my left eye was sewn to reduce the amount of cornea exposed. This was because blinking is very often compromised when the facial nerve is severed and reducing the eye surface reduces the risk of debris damaging the eye. However, my blinking is good and so my eye surgeon agreed to reopen the eye.
This was scheduled to happen in December 2012 (the surgeon has a loooooong waiting list!) but yesterday I had a phone call from the Queen Victoria Hospital to say that my surgeon has had a cancellation and I can have my surgery on Monday next week. Did I want it? Hell, yeah!
I am now vacillating between excitement, nervousness and apprehension, in almost equal measure! The reverse-tarsorrhaphy (to give it its unpronounceable - to me, anyway! name) will be carried out under local anaesthetic and sedation, which I am told will mean that I will be awake during the procedure but won't remember any of it. Most people would say that this is no different to my usual modus operandi :-) I blame the radiotherapy for my shocking memory nowadays - some of my brain cells have clearly been frazzled!
Tomorrow brings my check-up at the Royal Marsden - my first since April. I have found myself getting a bit anxious over the past couple of weeks, simply because three months feels like a long time to go without the reassurance of a specialist examination. I tell myself that the doctors wouldn't have let me go three months between check-ups unless they were certain that it is safe to do so, but the niggling doubts wriggle to the surface every so often. It's just the way it is. However, I take comfort from the fact that my dentist had a good feel around my head and neck only a fortnight ago and was happy with everything (she knows my medical history) so let's hope that's the case tomorrow as well.
I still can't tell you my exciting news, to which I alluded in my previous post. I will soon, honestly! Sorry to keep you in suspense....
This was scheduled to happen in December 2012 (the surgeon has a loooooong waiting list!) but yesterday I had a phone call from the Queen Victoria Hospital to say that my surgeon has had a cancellation and I can have my surgery on Monday next week. Did I want it? Hell, yeah!
I am now vacillating between excitement, nervousness and apprehension, in almost equal measure! The reverse-tarsorrhaphy (to give it its unpronounceable - to me, anyway! name) will be carried out under local anaesthetic and sedation, which I am told will mean that I will be awake during the procedure but won't remember any of it. Most people would say that this is no different to my usual modus operandi :-) I blame the radiotherapy for my shocking memory nowadays - some of my brain cells have clearly been frazzled!
Tomorrow brings my check-up at the Royal Marsden - my first since April. I have found myself getting a bit anxious over the past couple of weeks, simply because three months feels like a long time to go without the reassurance of a specialist examination. I tell myself that the doctors wouldn't have let me go three months between check-ups unless they were certain that it is safe to do so, but the niggling doubts wriggle to the surface every so often. It's just the way it is. However, I take comfort from the fact that my dentist had a good feel around my head and neck only a fortnight ago and was happy with everything (she knows my medical history) so let's hope that's the case tomorrow as well.
I still can't tell you my exciting news, to which I alluded in my previous post. I will soon, honestly! Sorry to keep you in suspense....
Monday, 16 July 2012
How has your summer been? This is mine....
Over a month since my last post - it's not because nothing of note has happened, but more because I just keep forgetting to come on here and write! I have noticed that my memory has been worse since my radiotherapy last year, I suspect because some of my brain cells might have got fried (well, that's my excuse and I'm sticking to it....). I've also noticed that, since I'm not having to go to work during the day and therefore have plenty of time to do things, I have become very time-inefficient: what I used to be able to do in an hour or two at the end of a working day now takes me about five or six hours. I suppose that because I have plenty of time on my hands, my "tasks" have expanded to fill the time available (is that Parkinson's Law? where work expands to fill the time available?).
What has been happening since I last posted? I shall do a list - not necessarily in chronological order:
I have some rather exciting news to share with you, but can't for another few weeks. It's not to do with weddings, births or moving house, so don't start thinking it's something like that! Just watch this space and all will be revealed.
What has been happening since I last posted? I shall do a list - not necessarily in chronological order:
- we collected Adam from university and took advantage of being in the Lake District to travel up to Glasgow and see my mum. She was in hospital following a fall at her care home and quite confused when we first saw her, but she improved over the weekend. Her memory for the far past is good but she isn't always aware of who we are, or that we are grown-up rather than babies. She's now back at her care home. We will see her again in September when we return Adam to uni;
- Neil and I went to see Shrek - the Musical on Father's Day. Brilliant fun! Plenty for adults as well as children;
- I met up with two other women who have Facial Palsy. We all "know" each other through a Facebook group set up for people affected by FP and, as one of them was spending a few days in London en route from America to Transylvania (no, really!), and the other two of us were in the South East, we met up in London and wandered around the National Gallery before having lunch. It was good to be with other people affected by FP, rather than being the only one - safety in numbers! ;
- I'm still volunteering at Orpheus every week and loving it. We had a "Come Dine with Orpheus" day, when the students were allocated a country and had to plan a menu, write and price a shopping list, shop, prepare, cook and serve - we all ate together and there was a judging panel. The students loved it (and so did the staff and volunteers!). Term ends this week, so tomorrow is my last day with the students till September. I helped at the Open Day on Saturday, which required me to do lots of baking (photos on Facebook last week). Great day - I was able to watch some performances by the students, including a Street Dance show, and then took part in a dance workshop. I believe I am now able to "bust some moves", as they say....I also was lucky enough to be invited to the Orpheus Gala at Trevereux Manor, where I met Prince Edward (patron of the Orpheus Trust) and enjoyed some superb entertainment by the students and a singing group called Cantabile;
- My professional institute (CIPFA) held its annual conference in Liverpool and as I am once more an elected Council member, I went along to this. I was quite anxious beforehand: I missed Conference last year for obvious reasons and was pretty apprehensive about seeing so many people in one place, some of whom would know my story but wouldn't know what effect it had had on my face, some of whom had seen me so knew what to expect and many who would have no idea who I am and why my face looks different. I was so anxious that I developed a sicky headache the day before I was due to travel and ended up being sick on the morning of my journey, but my apprehension was unnecessary. Everyone was lovely to me, interested in how I was and pleased that I was involved again. It's odd, how I still find it difficult to go to new places, even though I know that my face looks much better than it did. I think the psychological impact of facial palsy is perhaps more difficult to deal with than the physical impact;
- I ran the British 10k in London, to raise funds for Orpheus. I thought I would do it in about 1.15 or 1.20, but surprised myself by running it in 1.03.48 - not bad, given I had done no running for three weeks, no gym for two weeks and had stuffed my little face while in Liverpool!;
I have some rather exciting news to share with you, but can't for another few weeks. It's not to do with weddings, births or moving house, so don't start thinking it's something like that! Just watch this space and all will be revealed.
Monday, 11 June 2012
I'm still here!
Rumours of my disappearance or demise have been greatly exaggerated - the fact that I haven't posted on this blog for a month could possibly have led people to wonder what was going on, but the truth is I have been (a) busy, (b) on holiday and (c) busy, in that order!
I won't make this a really long blog post, detailing all the minutiae of my life over the last month, so this will be in the nature of an edited highlights entry!
Holiday was fabulous - Neil and I went to Sicily, a part of Italy we had never been to but were keen to visit, mainly because, as well as having a fascinating history, it has amazing mountains (we do like our mountains!). We flew into Catania and spent two weeks just outside a small hillside town called Francavilla, enjoying the peace and tranquillity and some climbing and walking. It wasn't a touristy place at all, which suits us fine - I've never understood why people want to travel to another country and then try to recreate their usual lifestyle, with diet, drink and tv they would have in the UK. Surely one of the points of going abroad is to experience different lifestyles and cultures? Otherwise it's just like being at home but with better weather and a chance to shout and point at things in a patronising manner because those "Johnny Foreigners" don't understand English....but I digress! Let's return to our holiday.
Our friend Jonathan joined us for 12 days - we do a lot of walking and climbing with him (he was part of our Kilimanjaro group 6 years ago) - and during the time he was with us, we did two preparation climbs and some small walks so that we were as ready as we could be for the Main Event - the ascent of Mount Etna! Etna is an active volcano and was particularly active during March of this year, so we were none too sure before we went to Sicily whether we would be able to get onto the mountain or not. Luckily, it's calmed down, although there are plumes of smoke rising from it every day - a wonderful sight which we could see from our villa every day. There's something so elemental and powerful about this manifestation of nature - not influenced by mankind in any way but controlled by something so much more forceful and unambiguous.
We set out to climb Etna on Neil's birthday - his choice of birthday treat! Up at 5 in the morning, breakfast of pasta, then a drive to the Refugio from where we began our climb. There are tours of Mt Etna, where you get taken up in a 4x4 to the Observatory and can do a short (100 metres or so) walk to a viewpoint, but we wanted to do it the proper way, using our own momentum to get up there. Boy, was it hard work! We walked onto the mountain at 7 a.m and arrived back at our car at 7.10 p.m - just over 12 hours of tough uphill and downhill walking, with a total of about 1 hour in breaks. We started off in lava dust, then struggled in lava shale and finally walked through 3 or 4 metre high banks of snow and ice - a strange experience, seeing smoke and steam rising from the earth, while surrounded by snow! Etna is 3,300 metres high (three times the height of Ben Nevis, I think) and the most ascent I have done in one day - while Kili is considerably higher, at 5895 m, we did it over several days, to acclimatise to the altitude. Tough, tough, tough - two hours into the climb, I honestly thought I was going to have to turn back, but Neil and Jonathan relieved me of a couple of the heavier items in my rucksack and I remembered the recuperative powers of chocolate and was able to carry on! It's amazing how a few squares of hazelnut chocolate can perk you up.
I have to say that climbing Etna is the toughest climb I have ever done (and before you think I am just a girly wuss, Neil and Jonathan agree it is a blimming tough climb!) and I discovered that 12 hours of solid, hard activity is pushing my boundaries a bit too far - during the night, after our climb, I woke up with a thumping headache and was sick, then felt headachey and listless all the next day. I suspect that 12 hours was about 2 or 3 hours too much for me at this stage, but you have to test the limits, don't you?
The remainder of the holiday included plenty rest, relaxation, reading, eating and enjoying Italian history and architecture. There's a lovely unspoiled feel about the part of Sicily we were in - people living a pretty unsophisticated life, working on the land, no airs and graces. We loved it - everyone was really friendly and, because no one really spoke much English, we were able to practise our (very poor) Italian and, in so doing, give them a bit of a laugh! We got mistaken for French or German people quite a lot, so I had some practice conversing in those languages too - good for my lazy brain! We dropped Jonathan off at Catania airport at the end of his stay and then Neil and I had another couple of days at an Agriturismo, during which we visited Siracusa and Noto - both more popular with tourists and therefore busier. There's just such an embarrassment of riches there, with the history, remains of Greek and Roman amphitheatres, wonderful churches and civic buildings, all topped off with wonderfully friendly people. We loved it (well, except for driving into Catania, where we experienced just the worst, most inconsiderate, dangerous driving we have come across - even by Italian standards, it was dreadful!).
Since coming home, I have struggled a bit due to the appalling weather. My mood is always affected by bad weather (that's why I am such a miserable ratbag over the winter months) and this pathetic excuse for a summer is really getting me down. However, I have resorted to my usual remedy of exercise and that seems to be helping.
I can't end this post without remarking on the fact that, while we were away, it was the anniversary of my surgery. Given how I felt this time last year, I am even more in awe of the resilience of the human body and the work of the NHS - just over a year to the day of having pretty intense surgery, with all the subsequent treatments and side-effects, I was standing at the top of Mt Etna. That's pretty good, I think! It's not just the physical stamina and energy, but the fact that I feel much better about how my face looks and was happy having photographs taken and didn't feel at all self-conscious about how I looked. I think that's real progress.
Oh, and I also featured in our local newspaper, which ran an article about my London Marathon exploits :-)
I won't make this a really long blog post, detailing all the minutiae of my life over the last month, so this will be in the nature of an edited highlights entry!
Holiday was fabulous - Neil and I went to Sicily, a part of Italy we had never been to but were keen to visit, mainly because, as well as having a fascinating history, it has amazing mountains (we do like our mountains!). We flew into Catania and spent two weeks just outside a small hillside town called Francavilla, enjoying the peace and tranquillity and some climbing and walking. It wasn't a touristy place at all, which suits us fine - I've never understood why people want to travel to another country and then try to recreate their usual lifestyle, with diet, drink and tv they would have in the UK. Surely one of the points of going abroad is to experience different lifestyles and cultures? Otherwise it's just like being at home but with better weather and a chance to shout and point at things in a patronising manner because those "Johnny Foreigners" don't understand English....but I digress! Let's return to our holiday.
Our friend Jonathan joined us for 12 days - we do a lot of walking and climbing with him (he was part of our Kilimanjaro group 6 years ago) - and during the time he was with us, we did two preparation climbs and some small walks so that we were as ready as we could be for the Main Event - the ascent of Mount Etna! Etna is an active volcano and was particularly active during March of this year, so we were none too sure before we went to Sicily whether we would be able to get onto the mountain or not. Luckily, it's calmed down, although there are plumes of smoke rising from it every day - a wonderful sight which we could see from our villa every day. There's something so elemental and powerful about this manifestation of nature - not influenced by mankind in any way but controlled by something so much more forceful and unambiguous.
We set out to climb Etna on Neil's birthday - his choice of birthday treat! Up at 5 in the morning, breakfast of pasta, then a drive to the Refugio from where we began our climb. There are tours of Mt Etna, where you get taken up in a 4x4 to the Observatory and can do a short (100 metres or so) walk to a viewpoint, but we wanted to do it the proper way, using our own momentum to get up there. Boy, was it hard work! We walked onto the mountain at 7 a.m and arrived back at our car at 7.10 p.m - just over 12 hours of tough uphill and downhill walking, with a total of about 1 hour in breaks. We started off in lava dust, then struggled in lava shale and finally walked through 3 or 4 metre high banks of snow and ice - a strange experience, seeing smoke and steam rising from the earth, while surrounded by snow! Etna is 3,300 metres high (three times the height of Ben Nevis, I think) and the most ascent I have done in one day - while Kili is considerably higher, at 5895 m, we did it over several days, to acclimatise to the altitude. Tough, tough, tough - two hours into the climb, I honestly thought I was going to have to turn back, but Neil and Jonathan relieved me of a couple of the heavier items in my rucksack and I remembered the recuperative powers of chocolate and was able to carry on! It's amazing how a few squares of hazelnut chocolate can perk you up.
I have to say that climbing Etna is the toughest climb I have ever done (and before you think I am just a girly wuss, Neil and Jonathan agree it is a blimming tough climb!) and I discovered that 12 hours of solid, hard activity is pushing my boundaries a bit too far - during the night, after our climb, I woke up with a thumping headache and was sick, then felt headachey and listless all the next day. I suspect that 12 hours was about 2 or 3 hours too much for me at this stage, but you have to test the limits, don't you?
The remainder of the holiday included plenty rest, relaxation, reading, eating and enjoying Italian history and architecture. There's a lovely unspoiled feel about the part of Sicily we were in - people living a pretty unsophisticated life, working on the land, no airs and graces. We loved it - everyone was really friendly and, because no one really spoke much English, we were able to practise our (very poor) Italian and, in so doing, give them a bit of a laugh! We got mistaken for French or German people quite a lot, so I had some practice conversing in those languages too - good for my lazy brain! We dropped Jonathan off at Catania airport at the end of his stay and then Neil and I had another couple of days at an Agriturismo, during which we visited Siracusa and Noto - both more popular with tourists and therefore busier. There's just such an embarrassment of riches there, with the history, remains of Greek and Roman amphitheatres, wonderful churches and civic buildings, all topped off with wonderfully friendly people. We loved it (well, except for driving into Catania, where we experienced just the worst, most inconsiderate, dangerous driving we have come across - even by Italian standards, it was dreadful!).
Since coming home, I have struggled a bit due to the appalling weather. My mood is always affected by bad weather (that's why I am such a miserable ratbag over the winter months) and this pathetic excuse for a summer is really getting me down. However, I have resorted to my usual remedy of exercise and that seems to be helping.
I can't end this post without remarking on the fact that, while we were away, it was the anniversary of my surgery. Given how I felt this time last year, I am even more in awe of the resilience of the human body and the work of the NHS - just over a year to the day of having pretty intense surgery, with all the subsequent treatments and side-effects, I was standing at the top of Mt Etna. That's pretty good, I think! It's not just the physical stamina and energy, but the fact that I feel much better about how my face looks and was happy having photographs taken and didn't feel at all self-conscious about how I looked. I think that's real progress.
Oh, and I also featured in our local newspaper, which ran an article about my London Marathon exploits :-)
Wednesday, 9 May 2012
Mrs Bounce-Back has bounced back.
After my little blip on Friday, I think I am back to my usual positive self. Thank you for the comments left here and on Facebook (also texts and emails). It means a lot and it does help when friends take the trouble to reflect on what I've said and to respond. I know that these blips will happen and I know that I can deal with them, but initially the blip feels a bit like being on a train that has derailed and there's a sense in which I wonder whether I can get back onto the right track. However, I think I am back on the right track now!
It helps that I have found out that Adam Yauch's cancer was of a different type from mine. I got a very helpful text from our next door neighbour's daughter (the anaesthetist married to a surgeon, who I sometimes view as my own personal physician :-)), telling me that, off the top of her head, she knew there were 11 different types of cancer which occur in the parotid gland, plus others which can be secondary cancers, so that made me view the odds a bit more sensibly. I am resisting the temptation to use the services of Dr Google and start investigating details, including prognosis, for my particular type of cancer. I take the view that until the professionals advise me to put my affairs in order, I should carry on as normal. That means keeping myself healthy, staying busy, looking for work and caring for my family. I think I am achieving a fair degree of success in three out of four of these - the work one isn't going so well! As you can imagine, finding project work in local government is a bit like searching for the Holy Grail.
I could really have done with some sunny weather over the bank holiday weekend, to lift my mood and make it more pleasant to be outside! Sadly, this was not to be, except for one or two brief spells of no rain and a glimmer of sunshine. I did a five mile fundraising walk on Saturday afternoon for the Orpheus Centre, which was followed by entertainment from one of their former students, a very talented singer. I enjoyed that, getting some fresh air and exercise, even if I was a bit muddy by the end of it! Neil and I managed to get out for a longish walk on Monday, in the bluebell woods, with a very tasty pub lunch as our reward.
Since then, it's back to the usual routine of home, domestic goddess impersonation and exercise. Yesterday Neil and I met up with an old friend and had a good catch-up over dinner. One of today's tasks is making my Hermann cake - anyone else done this? It's basically a chain cake, where you receive a portion of cake mix, fermenting away as it has a yeast base, and you "feed" it for ten days, then split it into four, give away three portions along with the instructions and cook the fourth. I did it earlier this year and really liked the result.
Later still, I think I might be forced to do a Sun Dance, just to get some better weather!
It helps that I have found out that Adam Yauch's cancer was of a different type from mine. I got a very helpful text from our next door neighbour's daughter (the anaesthetist married to a surgeon, who I sometimes view as my own personal physician :-)), telling me that, off the top of her head, she knew there were 11 different types of cancer which occur in the parotid gland, plus others which can be secondary cancers, so that made me view the odds a bit more sensibly. I am resisting the temptation to use the services of Dr Google and start investigating details, including prognosis, for my particular type of cancer. I take the view that until the professionals advise me to put my affairs in order, I should carry on as normal. That means keeping myself healthy, staying busy, looking for work and caring for my family. I think I am achieving a fair degree of success in three out of four of these - the work one isn't going so well! As you can imagine, finding project work in local government is a bit like searching for the Holy Grail.
I could really have done with some sunny weather over the bank holiday weekend, to lift my mood and make it more pleasant to be outside! Sadly, this was not to be, except for one or two brief spells of no rain and a glimmer of sunshine. I did a five mile fundraising walk on Saturday afternoon for the Orpheus Centre, which was followed by entertainment from one of their former students, a very talented singer. I enjoyed that, getting some fresh air and exercise, even if I was a bit muddy by the end of it! Neil and I managed to get out for a longish walk on Monday, in the bluebell woods, with a very tasty pub lunch as our reward.
Since then, it's back to the usual routine of home, domestic goddess impersonation and exercise. Yesterday Neil and I met up with an old friend and had a good catch-up over dinner. One of today's tasks is making my Hermann cake - anyone else done this? It's basically a chain cake, where you receive a portion of cake mix, fermenting away as it has a yeast base, and you "feed" it for ten days, then split it into four, give away three portions along with the instructions and cook the fourth. I did it earlier this year and really liked the result.
Later still, I think I might be forced to do a Sun Dance, just to get some better weather!
Saturday, 5 May 2012
Over- thinking?
After several weeks of good, positive feelings and a real sense of making progress, perhaps it was inevitable that something would come along and side-swipe me.
The news yesterday that MCA, from the band The BEastie Boys, had died has hit me harder than it ought to. I don't particularly like the Beastie Boys. I'm not a big fan of their music. They don't feature on my iPod. So why did I find tears on my cheeks last night? Because he died of cancer in his parotid gland - exactly where I had mine. If I needed a reminder that this disease is sickeningly evil and destructive, then I certainly got one. I know that each case is unique and you can't accurately predict that two people with the same type of cancer will respond in the same way - and anyway, I don't know what type of cancer he had in his parotid. It could be a totally different type, at a different stage when diagnosed, he could have had different doses of radiotherapy; there are all kinds of things that could be different. But still, I find myself brought up short and having, once again, to confront my deepest fears and insecurities. Already I have asked the ever-patient Neil to reassure me that he'll not leave me, no matter what. He is so good at recognising my worries and calming me down - not that I am hysterical or even a bit distrssed. It's more a sad resignation to the reality, once again brought into sharp relief, that this horrible disease never quite leaves you alone. Even if it's not physically present in your body, its malevolent voice is talking in your head. I can't silence it permanently.
I am hoping this is a temporary blip in my otherwise positive progress of the past few weeks. I have been reassured by family and friends that I shouldn't worry about something that happened to someone else, but I think part of the problem, for me, is that parotid cancer is so rare that anyone dying of it is news - somehow, if I had a more common cancer, I could believe that the chances of it being a different strain, a different type, to mine are greater. Des that make any sense? It does to me.
Wednesday, 2 May 2012
A few little pricks and hey presto!
Sheesh! I wrote and published a post here yesterday, came in this morning to correct a couple of typos I had noticed and the whole post has now disappeared - I am not impressed, Blogspot!! So now I have to try and remember what I wrote - for someone with the memory span of a blancmange, this is Not Easy. Here goes....
The last time I posted, it was just after the London Marathon. I am pleased to report that my enormous blister, a reminder of my little stroll around London, has now disappeared. I am of the "prick and squeeze" school when it comes to blisters - can't be doing with leaving it to reduce and disappear of its own accord (impatient? me??). Amy did sterling work in helping with my chosen course of action (sorry that you got sprayed with blister juice, daughter!) and although for a couple of days all I could wear on my feet were my Ugg boots, everything else was fine. My tired legs became untired within two days and I even managed a small trot on my way to the railway station on Tuesday, when I had the first of my medical appointments of the week: a trip to Charing Cross Hospital (confusingly, nowhere near Charing Cross!).
One of the side-effects of radiotherapy to the part of the head where mine was targetted is damage to the cochlea, resulting in loss of hearing which can be permanent or temporary. I had been deaf for a few months in my left ear - stone deaf, not just a bit hard of hearing. That, coupled with my lack of peripheral vision in my left eye, has left me feeling quite vulnerable, even in Oxted, statistically a very safe place. I had noticed that my left ear had started "popping" - initially very infrequently and resulting in my hearing returning for only a couple of seconds, but gradually becoming more frequent and the clarity of hearing lasting for longer. I am happy to say that my hearing test confirmed that, apart from a loss of hearing at higher frequencies particularly, my left ear has returned to a similar level of hearing as when they baselined my hearing last June/July, before my r/t started. There's no need for any kind of hearing aid - certainly not at this stage, although they will be monitoring me to make sure there's no further deterioration.
Over the past few months, I have got to know some mums from the website Mumsnet (worth a look if you like intelligent and funny debate) and had arranged to meet one of them at Westfield, near where she lives and a couple of stops away from Charing Cross Hospital. I know some people find the whole concept of "virtual" friends a bit odd, but over the past seven years, I have met many people I first knew virtually through the Runners' World website and quite a few of them have become good friends in real life, so I find nothing unusual in getting to know people in an online community and considering them to be friends, even if we never actually meet! However, I was able to meet this Mumsnet friend and her very cute daughter and we had a lovely afternoon, drinking tea, mooching around the shops and chatting.
The following day, I attended my first Finance meeting to represent the Surrey and Sussex area of my church synod. This was held in East Croydon URC and as I sat in the meeting, it felt very much like sitting in finance meetings at Croydon Council - plus ca change! The numbers might have been on a much smaller scale but the principles are the same. And there was cake, so that's always a good thing.
On Thursday evening, I had arranged to meet up with a former colleague from Croydon - she now works for Camden but lives near Croydon, so this made good logistic sense for us both. I think it is a measure of how much more confident I feel about how I look that I was absolutely fine about walking into a very crowded bar to meet her - I didn't even think about whether people might stare at me. We had a very good catch-up over a bottle of Cava and then went for tapas nearby. I don't know whether it's my age, but I got to the point where the music in the bar was so loud that I felt I was having to shout to be heard and was struggling to hear what my friend was saying in reply....am I getting to the point where I mutter darkly things like "The youth of today" and "It wasn't like that in my day"?
On Friday there was a meeting of Headstart, the support group for people who have/have had head and neck cancers (a broad catch-all encompassing everything in that area). These meetings move between three hospitals: Maidstone, Medway and East Grinstead. This time, it was being held in East Grinstead (my second home, I often think, along with the Royal Marsden). Usually these meetings are held on a Saturday and Neil comes along, but he couldn't take time off work so I went on my own.
The meetings are always very buzzy and chatty - a chance to talk to people who understand exactly what I might have experienced. Although I haven't yet come across anyone who has had exactly the same as I have had (that's what happens when you get something pretty rare! I'm so special, you know....), there were plenty people there who have some kind of facial palsy or disfigurement as a result of their cancer and/or treatment, so it feels like a meeting where I am taken at face value - literally! We always have a quiz and at the two meetings which Neil and I have attended, we have won the quiz quite convincingly. This time, since I was doing the quiz on my own, I wasn't expecting to win but, dear readers, I am delighted to tell you that I did (I think it was knowing Offa's Dyke that helped) - I won a rather lovely travel pack of L'Occitane goodies, which will come in very handy for our forthcoming trip to Sicily. Friday must have been my lucky day, since I then won 6 prizes in our raffle, although I told them to redraw after I won the first one. It seemed a bit greedy to take something every time one of my numbers got drawn out! I should have bought some lottery tickets, shouldn't I?
And so to Saturday, and a day-long Makaton for Beginners course. I did this along with another volunteer from the Orpheus Centre. Makaton is a signing programme which uses signing, symbols and speech (so not the same as BSL) and is very good for helping children and adults with learning difficulties to communicate. Interestingly, it is also very good as a communication means for young children without learning difficulties. Both our children learned a little while at Junior School and they use it a lot in their work with children and young adults with learning disabilities. Of course, like any language, you have to use it regularly to retain it and become more fluent, so Jenny and I were practising at Orpheus on Tuesday, which caused some amusement with students who are much more fluent than we are - our fumbling, stumbling attempts at Makaton brought a smile to their faces anyway! I found the day quite tiring - we did pack a lot in and I am not used to using my brain and concentrating for long periods, but I view this kind of activity as good preparation for my return to work (if ever any work becomes available in local government!).
And now the the little pricks I refer to in the title of this post. On Tuesday, I had an appointment with my consultant plastic surgeon to have Botox in my chin, where I have a dimple caused by over-compensation. I hadn't seen this consultant since my initial meeting with him in November last year, when he told me that he wouldn't do any surgery (facelift) until two years after my cancer surgery, which would be in May 2013, so he hadn't seen my face for six months. My speech therapist (who doesn't do anything about my speech but is a facial palsy specialist and helps me with massages and exercises to try to achieve symmetry) sat in on our meeting and I am delighted to report that both of them, when I raised my eyebrows for them, gave a spontaneous "Wow" (or words to that effect), because the movement I had was so good. I can't tell you how pleased I was by that - I had noticed, despite my severe self-criticism, that my face was looking better, more "normal" in its relative proportions and movement. Certainly, people I hadn't seen for a few months had been saying this to me, and even people I see regularly were commenting on how much my face has improved. In fact, at rest it looks pretty much like it used to, excepting the slightly smaller left eye. But to have two experienced professionals in the area of facial palsy to comment on how good my face looked meant a huge amount to me. I asked the consultant whether, if my face continues to improve as it is doing, it might be the case that surgery would bring about such marginal improvement that it wouldn't be worth the trauma of surgery and the inherent risk of a general anaesthetic and he agreed. Six months ago, if you'd told me that I might not have any surgery to my face, I would have been distressed but now I can see how this might be an option - and the best one at that. I think this is real progress for me - it means I accept how I look and am more confident about it.
I mentioned to the consultant that the colleague who would be reopening my eye was going to sew some gold weights into the eyelid to help it close and he thought that my eye closure was good enough that I might not need them - another thing that made my lopsided smile appear again! I won't be having my eye reopened until the end of the year (long waiting list made worse by the fact that the surgeon had an accident! He's fine, just hobbling about, apparently), so that gives my eye another 8 months or so to improve before he makes the decision about whether I need weights or not.
So, all in all, a good meeting! I then had my Botox - an injection into the chin, one into the palsied side of my mouth, because it's doing something it shouldn't when I screw my eyes up and one into the non-palsied side, so that my smile looks more symmetrical. They really are just tiny little pricks and take a few days to work, so there's no discernible difference at the moment.
I felt very buoyed up when I left the hospital. It feels as if things are looking more positive and I am accepting how I look - still trying to improve it, but recognising how far I've come. Interestingly, last night I found the sheets from my very first session with the speech therapist, two weeks after my original surgery - there are photos of my face, showing how I have to position my fingers for the facial massage, etc and my eye is still swollen and bruised from the surgery and my face...well, I had forgotten (blanked from my memory?) just how droopy and swollen my entire left cheek was, hanging down like a useless lump of flesh. My eyebrow was resting on top of my eyelid, making my eye look even worse. What a difference to how I look now! Yes, I know it's not symmetrical, I know it's not perfect and I know that, when I talk or laugh or smile, it's obvious that the left side of my face doesn't do quite what it should but it's still hugely better than it was.
It's so good to write a positive post and to acknowledge that there's more acceptance from me of how I look. I have railed against it, I have been depressed and despondent about it, I have grieved for the face I had for 50 plus years. That face won't come back, but I am beginning to like the one I have.
Of course, my lovely family and friends have said all along that they don't notice my face, after the first couple of minutes of seeing me for the first time. Neil, Amy and Adam tell me I am beautiful (the short-sighted fools!!) - not every day, when it would become something just trotted out and banal in its frequency, but often enough for me to be boosted by it. This kind of support has helped me enormously, even if at times I have responded by commands that people should get eye tests.
At a time when things are going well for me, there are still people who are suffering. Last week, a good friend of mine, who has been immensely and quietly supportive of me over the past year, had some bad news which has left her and her husband very sad. I can't and won't go into details, but I hope she knows that there's so much love and support surrounding them, not just from me but from the many friends and people she has helped.
We all have our bad times. Now my times are better, possibly even good, it's a salutary reminder that just because my world is going okay, it doesn't mean that everyone's is.
The last time I posted, it was just after the London Marathon. I am pleased to report that my enormous blister, a reminder of my little stroll around London, has now disappeared. I am of the "prick and squeeze" school when it comes to blisters - can't be doing with leaving it to reduce and disappear of its own accord (impatient? me??). Amy did sterling work in helping with my chosen course of action (sorry that you got sprayed with blister juice, daughter!) and although for a couple of days all I could wear on my feet were my Ugg boots, everything else was fine. My tired legs became untired within two days and I even managed a small trot on my way to the railway station on Tuesday, when I had the first of my medical appointments of the week: a trip to Charing Cross Hospital (confusingly, nowhere near Charing Cross!).
One of the side-effects of radiotherapy to the part of the head where mine was targetted is damage to the cochlea, resulting in loss of hearing which can be permanent or temporary. I had been deaf for a few months in my left ear - stone deaf, not just a bit hard of hearing. That, coupled with my lack of peripheral vision in my left eye, has left me feeling quite vulnerable, even in Oxted, statistically a very safe place. I had noticed that my left ear had started "popping" - initially very infrequently and resulting in my hearing returning for only a couple of seconds, but gradually becoming more frequent and the clarity of hearing lasting for longer. I am happy to say that my hearing test confirmed that, apart from a loss of hearing at higher frequencies particularly, my left ear has returned to a similar level of hearing as when they baselined my hearing last June/July, before my r/t started. There's no need for any kind of hearing aid - certainly not at this stage, although they will be monitoring me to make sure there's no further deterioration.
Over the past few months, I have got to know some mums from the website Mumsnet (worth a look if you like intelligent and funny debate) and had arranged to meet one of them at Westfield, near where she lives and a couple of stops away from Charing Cross Hospital. I know some people find the whole concept of "virtual" friends a bit odd, but over the past seven years, I have met many people I first knew virtually through the Runners' World website and quite a few of them have become good friends in real life, so I find nothing unusual in getting to know people in an online community and considering them to be friends, even if we never actually meet! However, I was able to meet this Mumsnet friend and her very cute daughter and we had a lovely afternoon, drinking tea, mooching around the shops and chatting.
The following day, I attended my first Finance meeting to represent the Surrey and Sussex area of my church synod. This was held in East Croydon URC and as I sat in the meeting, it felt very much like sitting in finance meetings at Croydon Council - plus ca change! The numbers might have been on a much smaller scale but the principles are the same. And there was cake, so that's always a good thing.
On Thursday evening, I had arranged to meet up with a former colleague from Croydon - she now works for Camden but lives near Croydon, so this made good logistic sense for us both. I think it is a measure of how much more confident I feel about how I look that I was absolutely fine about walking into a very crowded bar to meet her - I didn't even think about whether people might stare at me. We had a very good catch-up over a bottle of Cava and then went for tapas nearby. I don't know whether it's my age, but I got to the point where the music in the bar was so loud that I felt I was having to shout to be heard and was struggling to hear what my friend was saying in reply....am I getting to the point where I mutter darkly things like "The youth of today" and "It wasn't like that in my day"?
On Friday there was a meeting of Headstart, the support group for people who have/have had head and neck cancers (a broad catch-all encompassing everything in that area). These meetings move between three hospitals: Maidstone, Medway and East Grinstead. This time, it was being held in East Grinstead (my second home, I often think, along with the Royal Marsden). Usually these meetings are held on a Saturday and Neil comes along, but he couldn't take time off work so I went on my own.
The meetings are always very buzzy and chatty - a chance to talk to people who understand exactly what I might have experienced. Although I haven't yet come across anyone who has had exactly the same as I have had (that's what happens when you get something pretty rare! I'm so special, you know....), there were plenty people there who have some kind of facial palsy or disfigurement as a result of their cancer and/or treatment, so it feels like a meeting where I am taken at face value - literally! We always have a quiz and at the two meetings which Neil and I have attended, we have won the quiz quite convincingly. This time, since I was doing the quiz on my own, I wasn't expecting to win but, dear readers, I am delighted to tell you that I did (I think it was knowing Offa's Dyke that helped) - I won a rather lovely travel pack of L'Occitane goodies, which will come in very handy for our forthcoming trip to Sicily. Friday must have been my lucky day, since I then won 6 prizes in our raffle, although I told them to redraw after I won the first one. It seemed a bit greedy to take something every time one of my numbers got drawn out! I should have bought some lottery tickets, shouldn't I?
And so to Saturday, and a day-long Makaton for Beginners course. I did this along with another volunteer from the Orpheus Centre. Makaton is a signing programme which uses signing, symbols and speech (so not the same as BSL) and is very good for helping children and adults with learning difficulties to communicate. Interestingly, it is also very good as a communication means for young children without learning difficulties. Both our children learned a little while at Junior School and they use it a lot in their work with children and young adults with learning disabilities. Of course, like any language, you have to use it regularly to retain it and become more fluent, so Jenny and I were practising at Orpheus on Tuesday, which caused some amusement with students who are much more fluent than we are - our fumbling, stumbling attempts at Makaton brought a smile to their faces anyway! I found the day quite tiring - we did pack a lot in and I am not used to using my brain and concentrating for long periods, but I view this kind of activity as good preparation for my return to work (if ever any work becomes available in local government!).
And now the the little pricks I refer to in the title of this post. On Tuesday, I had an appointment with my consultant plastic surgeon to have Botox in my chin, where I have a dimple caused by over-compensation. I hadn't seen this consultant since my initial meeting with him in November last year, when he told me that he wouldn't do any surgery (facelift) until two years after my cancer surgery, which would be in May 2013, so he hadn't seen my face for six months. My speech therapist (who doesn't do anything about my speech but is a facial palsy specialist and helps me with massages and exercises to try to achieve symmetry) sat in on our meeting and I am delighted to report that both of them, when I raised my eyebrows for them, gave a spontaneous "Wow" (or words to that effect), because the movement I had was so good. I can't tell you how pleased I was by that - I had noticed, despite my severe self-criticism, that my face was looking better, more "normal" in its relative proportions and movement. Certainly, people I hadn't seen for a few months had been saying this to me, and even people I see regularly were commenting on how much my face has improved. In fact, at rest it looks pretty much like it used to, excepting the slightly smaller left eye. But to have two experienced professionals in the area of facial palsy to comment on how good my face looked meant a huge amount to me. I asked the consultant whether, if my face continues to improve as it is doing, it might be the case that surgery would bring about such marginal improvement that it wouldn't be worth the trauma of surgery and the inherent risk of a general anaesthetic and he agreed. Six months ago, if you'd told me that I might not have any surgery to my face, I would have been distressed but now I can see how this might be an option - and the best one at that. I think this is real progress for me - it means I accept how I look and am more confident about it.
I mentioned to the consultant that the colleague who would be reopening my eye was going to sew some gold weights into the eyelid to help it close and he thought that my eye closure was good enough that I might not need them - another thing that made my lopsided smile appear again! I won't be having my eye reopened until the end of the year (long waiting list made worse by the fact that the surgeon had an accident! He's fine, just hobbling about, apparently), so that gives my eye another 8 months or so to improve before he makes the decision about whether I need weights or not.
So, all in all, a good meeting! I then had my Botox - an injection into the chin, one into the palsied side of my mouth, because it's doing something it shouldn't when I screw my eyes up and one into the non-palsied side, so that my smile looks more symmetrical. They really are just tiny little pricks and take a few days to work, so there's no discernible difference at the moment.
I felt very buoyed up when I left the hospital. It feels as if things are looking more positive and I am accepting how I look - still trying to improve it, but recognising how far I've come. Interestingly, last night I found the sheets from my very first session with the speech therapist, two weeks after my original surgery - there are photos of my face, showing how I have to position my fingers for the facial massage, etc and my eye is still swollen and bruised from the surgery and my face...well, I had forgotten (blanked from my memory?) just how droopy and swollen my entire left cheek was, hanging down like a useless lump of flesh. My eyebrow was resting on top of my eyelid, making my eye look even worse. What a difference to how I look now! Yes, I know it's not symmetrical, I know it's not perfect and I know that, when I talk or laugh or smile, it's obvious that the left side of my face doesn't do quite what it should but it's still hugely better than it was.
It's so good to write a positive post and to acknowledge that there's more acceptance from me of how I look. I have railed against it, I have been depressed and despondent about it, I have grieved for the face I had for 50 plus years. That face won't come back, but I am beginning to like the one I have.
Of course, my lovely family and friends have said all along that they don't notice my face, after the first couple of minutes of seeing me for the first time. Neil, Amy and Adam tell me I am beautiful (the short-sighted fools!!) - not every day, when it would become something just trotted out and banal in its frequency, but often enough for me to be boosted by it. This kind of support has helped me enormously, even if at times I have responded by commands that people should get eye tests.
At a time when things are going well for me, there are still people who are suffering. Last week, a good friend of mine, who has been immensely and quietly supportive of me over the past year, had some bad news which has left her and her husband very sad. I can't and won't go into details, but I hope she knows that there's so much love and support surrounding them, not just from me but from the many friends and people she has helped.
We all have our bad times. Now my times are better, possibly even good, it's a salutary reminder that just because my world is going okay, it doesn't mean that everyone's is.
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