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?
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