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.
Showing posts with label cancer. Show all posts
Showing posts with label cancer. Show all posts
Monday, 21 January 2013
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!
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.
Monday, 26 March 2012
On make-up, confidence and Good Things....
Well, my positive streak continues, despite my thinking that the bubble was bound to burst last week - after all, I don't normally get a prolonged spell of nice things and good news, do I? Certainly not over the past 12 months!
Last Friday, I went to the Ideal Home Show with my friends Sally and Sue. I hadn't been there for a few years and we decided to make it a bit of a "girls' day out", even though we're no longer girls - ah, well! We had a really lovely, relaxed day - looked round a couple of the show homes, wandered round sampling cheese and sausages, plenty of tea breaks etc and a champagne break, since Sue had found out she's going to be a grandmother so we had a little celebration. Sadly, I was only able to have a couple of mouthfuls and then poured the rest into their glasses - I am a total lightweight when it comes to alcohol nowadays, even my beloved fizzy. It's not a problem, really, since I don't need alcohol to have a good time - and itmakes me a very cheap date!
Neil and I had friends coming round for dinner that evening, so we left the Show about half three and I was home by just after five o'clock. Luckily <taps nose> I had prepared pudding the previous evening and planned a cold starter, so it was a question of assembling the main course (Chicken Basque from the wonderful St Delia) and bunging it into the oven. I love it when you can just throw everything into one bit casserole dish and not have to faff about with vegetables, side dishes, etc, especially when time is a wee bit tight! The friends we had round were from Neil's cycling club, with their wives, and we had a lovely evening - good chat, the food seemed to go down well, lots of laughter. I was a wee bit tired after a day out (although we strolled around the IHS, it was still quite tiring for me because I was doing a lot of chatting, which always wears me out) but once we sat down at the table, Neil did all the fetching and carrying and our friends helped clear the table at the end of the evening, so I was able to sit and take it easy. It's nice to be entertaining people again - some small recompense for all the support I've had from friends over the past year.
Saturday dawned sunny and warm. Neil went out for a bike ride and I went out for a run on the Downs. I managed six miles (six slow miles!), which is the farthest I've run in over a year, so I was really happy with that - just glorious to be out there in the sunshine, running through the trees and enjoying the Spring air. The afternoon was spent doing laundry, cleaning windows (drawback of sunshine is that every smear or speck of dust is really magnified...) while Neil mowed the lawn and then started building the furniture for Amy's bedroom - ah yes! the joys of flatpack IKEA chests of drawers.....we know how to live!
Sunday brought church - I had signed up to do a reading, which I still find a bit challenging, since it involves standing at the front of the church with everyone looking at me, but I reminded myself that I was amongst friends and the important thing was to read. My looks are immaterial to this. It was fine and I had decided to download the text onto my iPad and use that to read from, instead of taking a Bible or printing out the text. This provided a source of interest to people afterwards, when we were having tea, as they wanted to have a look at it and see how it all worked. One of my good and lovely friends in the congregation came up to me afterwards and said that, when I was standing at the front, she could hardly see any difference between the two sides of my face, because there's been some good recovery - as always, I see the difference whereas other people see the similarities!
The rest of Sunday was more flatpack assembly (Neil), more cleaning and tidying (me) and then a relaxing evening, although I did have to review Adam's English essay (just for spelling and grammar, logical structure, etc) before he handed it in today. I also managed to spark a debate on Facebook because I got annoyed about the use of 's to make a plural, instead of just s - while most people seemed to support what I said, there was a certain level of dissent, which made for a lively discussion! I do think it's important to write and spell correctly and I just don't accept that it's somehow less important in informal communications like emails (dyslexia and vision problems excepted). I am also fed up with being told I am somehow a boring, anally-retentive member of the Grammar Gestapo for thinking that grammar and spelling are important. Hey ho, that's the way it goes, I guess - we will end up breeding a generation of people who think that the word "have" is spelt "of" and it becomes the (accepted) norm; meanwhile, people who think like I do just give up.....
And so to today - a little run this morning and then off to the Marsden this afternoon for my Look Good, Feel Better workshop. This is the charity arm of the cosmetic and beauty industry - they run regular workshops for women who are undergoing, or have been through, treatment for cancer. Many, of course, have lost their hair as a result of chemo and there are other side-effects which change the way a lot of women cancer patients feel about themselves and the way they look. For myself, I think you all know how much the facial palsy has affected my confidence in many ways - not just what I look like (I still get a shock when I look in the mirror, because I somehow don't expect to look like that), but my confidence in my ability to cope in social situations, being understood when I speak (especially on the phone), even driving - and as for feeling feminine, forget about it. It's a bit like the feeling you get when you're pregnant, that you stop being a woman (ironically, given that being pregnant is the best visible demonstration of being a woman) but become a "body" instead. I have felt a bit like that - I stopped being a woman but became a person who had this nasty little invader spreading through my body. Losing confidence in your looks (and let's be honest, I was never model material to begin with, but at least I could scrub up reasonably well) means that it's well nigh impossible to feel that you're making the best of yourself in social situations like parties, weddings, even just dinner parties. I haven't bothered with make-up because I've felt there's no point in it. I'd rather just skulk around and not draw attention to my face - admittedly, I have improved from my worst point, when my face was at its worst, but I still don't relish the thought of being the focus of people's attention and being looked at and I still feel uncomfortable having my photo taken. This self-confidence issue is one I do struggle with (I know I'm not alone in this and that it affects many people who haven't got facial palsy).
However, today, although I was the only person at the workshop who had facial palsy, I had a little bit of a breakthrough - yes, dear readers, I put on make-up and was pleased with the result. I can see the improvement, I got lots of advice about how to deal with the difference in the size of my eyes and I feel more able to try and make myself look a bit more presentable. This is not to say that I think I need to wear make-up every day to face the world, but it's nice to know that I can make more of myself when I want to. We are going to a family wedding on Saturday and I can put some slap on and know that it won't make me look worse - there's a reason why make-up is sometimes called "war paint" - it's another weapon I can use to arm myself before I face the public. I can also put my new-found knowledge into practice on Wednesday, when I have a very exciting day planned - a day trip to Bath on the Orient Express, no less! My hairdresser is getting married in Italy in July and for her "hen do", six of us are going to Bath, with a champagne breakfast on the way there and dinner on the return journey. It is going to be amazing - I love trains and especially the opulence and glamour of luxury trains like the Orient Express. My make-up workshop has been very timely!
Back to the Orpheus tomorrow for another day of volunteering - looking forward to it immensely! Amy is back from Marrakech (I went straight from the Marsden to pick her and her friend up from Gatwick) so I shall see her there, although she is going in later than I am as she has a local appointment first. Next time I am there (after the Easter break), I am going to get Amy to drive me there in the morning and then I can run home. It's about five miles cross-country, so it will be a good little bit of exercise.
So, to summarise, even if I don't Look Good (Look Acceptable, I think), I certainly Feel Better. My confidence has had a real boost today and my positive streak continues - let's hope it lasts!
Last Friday, I went to the Ideal Home Show with my friends Sally and Sue. I hadn't been there for a few years and we decided to make it a bit of a "girls' day out", even though we're no longer girls - ah, well! We had a really lovely, relaxed day - looked round a couple of the show homes, wandered round sampling cheese and sausages, plenty of tea breaks etc and a champagne break, since Sue had found out she's going to be a grandmother so we had a little celebration. Sadly, I was only able to have a couple of mouthfuls and then poured the rest into their glasses - I am a total lightweight when it comes to alcohol nowadays, even my beloved fizzy. It's not a problem, really, since I don't need alcohol to have a good time - and itmakes me a very cheap date!
Neil and I had friends coming round for dinner that evening, so we left the Show about half three and I was home by just after five o'clock. Luckily <taps nose> I had prepared pudding the previous evening and planned a cold starter, so it was a question of assembling the main course (Chicken Basque from the wonderful St Delia) and bunging it into the oven. I love it when you can just throw everything into one bit casserole dish and not have to faff about with vegetables, side dishes, etc, especially when time is a wee bit tight! The friends we had round were from Neil's cycling club, with their wives, and we had a lovely evening - good chat, the food seemed to go down well, lots of laughter. I was a wee bit tired after a day out (although we strolled around the IHS, it was still quite tiring for me because I was doing a lot of chatting, which always wears me out) but once we sat down at the table, Neil did all the fetching and carrying and our friends helped clear the table at the end of the evening, so I was able to sit and take it easy. It's nice to be entertaining people again - some small recompense for all the support I've had from friends over the past year.
Saturday dawned sunny and warm. Neil went out for a bike ride and I went out for a run on the Downs. I managed six miles (six slow miles!), which is the farthest I've run in over a year, so I was really happy with that - just glorious to be out there in the sunshine, running through the trees and enjoying the Spring air. The afternoon was spent doing laundry, cleaning windows (drawback of sunshine is that every smear or speck of dust is really magnified...) while Neil mowed the lawn and then started building the furniture for Amy's bedroom - ah yes! the joys of flatpack IKEA chests of drawers.....we know how to live!
Sunday brought church - I had signed up to do a reading, which I still find a bit challenging, since it involves standing at the front of the church with everyone looking at me, but I reminded myself that I was amongst friends and the important thing was to read. My looks are immaterial to this. It was fine and I had decided to download the text onto my iPad and use that to read from, instead of taking a Bible or printing out the text. This provided a source of interest to people afterwards, when we were having tea, as they wanted to have a look at it and see how it all worked. One of my good and lovely friends in the congregation came up to me afterwards and said that, when I was standing at the front, she could hardly see any difference between the two sides of my face, because there's been some good recovery - as always, I see the difference whereas other people see the similarities!
The rest of Sunday was more flatpack assembly (Neil), more cleaning and tidying (me) and then a relaxing evening, although I did have to review Adam's English essay (just for spelling and grammar, logical structure, etc) before he handed it in today. I also managed to spark a debate on Facebook because I got annoyed about the use of 's to make a plural, instead of just s - while most people seemed to support what I said, there was a certain level of dissent, which made for a lively discussion! I do think it's important to write and spell correctly and I just don't accept that it's somehow less important in informal communications like emails (dyslexia and vision problems excepted). I am also fed up with being told I am somehow a boring, anally-retentive member of the Grammar Gestapo for thinking that grammar and spelling are important. Hey ho, that's the way it goes, I guess - we will end up breeding a generation of people who think that the word "have" is spelt "of" and it becomes the (accepted) norm; meanwhile, people who think like I do just give up.....
And so to today - a little run this morning and then off to the Marsden this afternoon for my Look Good, Feel Better workshop. This is the charity arm of the cosmetic and beauty industry - they run regular workshops for women who are undergoing, or have been through, treatment for cancer. Many, of course, have lost their hair as a result of chemo and there are other side-effects which change the way a lot of women cancer patients feel about themselves and the way they look. For myself, I think you all know how much the facial palsy has affected my confidence in many ways - not just what I look like (I still get a shock when I look in the mirror, because I somehow don't expect to look like that), but my confidence in my ability to cope in social situations, being understood when I speak (especially on the phone), even driving - and as for feeling feminine, forget about it. It's a bit like the feeling you get when you're pregnant, that you stop being a woman (ironically, given that being pregnant is the best visible demonstration of being a woman) but become a "body" instead. I have felt a bit like that - I stopped being a woman but became a person who had this nasty little invader spreading through my body. Losing confidence in your looks (and let's be honest, I was never model material to begin with, but at least I could scrub up reasonably well) means that it's well nigh impossible to feel that you're making the best of yourself in social situations like parties, weddings, even just dinner parties. I haven't bothered with make-up because I've felt there's no point in it. I'd rather just skulk around and not draw attention to my face - admittedly, I have improved from my worst point, when my face was at its worst, but I still don't relish the thought of being the focus of people's attention and being looked at and I still feel uncomfortable having my photo taken. This self-confidence issue is one I do struggle with (I know I'm not alone in this and that it affects many people who haven't got facial palsy).
However, today, although I was the only person at the workshop who had facial palsy, I had a little bit of a breakthrough - yes, dear readers, I put on make-up and was pleased with the result. I can see the improvement, I got lots of advice about how to deal with the difference in the size of my eyes and I feel more able to try and make myself look a bit more presentable. This is not to say that I think I need to wear make-up every day to face the world, but it's nice to know that I can make more of myself when I want to. We are going to a family wedding on Saturday and I can put some slap on and know that it won't make me look worse - there's a reason why make-up is sometimes called "war paint" - it's another weapon I can use to arm myself before I face the public. I can also put my new-found knowledge into practice on Wednesday, when I have a very exciting day planned - a day trip to Bath on the Orient Express, no less! My hairdresser is getting married in Italy in July and for her "hen do", six of us are going to Bath, with a champagne breakfast on the way there and dinner on the return journey. It is going to be amazing - I love trains and especially the opulence and glamour of luxury trains like the Orient Express. My make-up workshop has been very timely!
Back to the Orpheus tomorrow for another day of volunteering - looking forward to it immensely! Amy is back from Marrakech (I went straight from the Marsden to pick her and her friend up from Gatwick) so I shall see her there, although she is going in later than I am as she has a local appointment first. Next time I am there (after the Easter break), I am going to get Amy to drive me there in the morning and then I can run home. It's about five miles cross-country, so it will be a good little bit of exercise.
So, to summarise, even if I don't Look Good (Look Acceptable, I think), I certainly Feel Better. My confidence has had a real boost today and my positive streak continues - let's hope it lasts!
Monday, 19 March 2012
One year since it all started.....
Ha, so much for my seven consecutive days of blogging - I ended up with a stinking cold and wilted, like a flower without any water.......just had no energy, spent most of the day coughing and pretty much most of the night doing the same, to the point where my ribs ached and I tried desperately to hold the cough in just to avoid feeling that horrible stabby pain, eventually having to just give in and cough away, one hand clutching my ribs and the other in front of my mouth!
You'd think, after all my body has coped with over the past year, that a cold would be something I could take in my stride, wouldn't you? But no, it knocked me for six. I suppose that might mean that my immune system is not yet back up to full speed. Of course, this meant no exercise for several days, so I am feeling a bit antsy and fed-up about that. Back to the gym tonight to an aerobics class, which I hope to manage without having to stop for a coughing fit - if I can do that, I know I am on the road to full recovery.
Talking of all my body has dealt with over the past year brings me to another reason why I haven't posted. On Saturday, the 17th of March, it was exactly one year since I first felt the lumps in my jaw and thought that something wasn't quite right. Little did I realise then just how big an impact those two little lumps would have. This time last year I was blithely thinking that I had some kind of infection and my glands had swollen up to fight it - yes, unusually only on one side, but I didn't think that was anything untoward. I do tend to think of events as "BC" or "AD" - Before Cancer and After Diagnosis, as if finding out I had cancer caused a seismic shift in my world. Did it? An interesting question - I look at my life and so much of it is the same: same husband and children, same friends (for the most part - one or two whom I thought would be more actively interested went very quiet very early and have stayed that way and conversely, some people have stepped up to the plate and proved themselves to be trusty companions), same house, same lifestyle, same interests....when I look at it like that, not much has changed.
And yet......I feel changed. I feel - I know! - that my approach to life has altered. I feel that, having been given what to me I can only describe as a second chance at life, I have been given the most precious gift: time on this earth. That fills me with such a deep appreciation and thankfulness for all the wonderful work of our NHS and the love and support of my family and friends that I hope I never take any of them for granted again. I feel that I have a renewed appreciation of the simpler things in life, too - I have found such gentle pleasure in listening to birdsong, watching our cats move from one sunny spot to another as the sun moves around the garden, seeing plants and flowers change over the seasons. Nothing sophisticated involved, just nature doing what she does. I don't feel that material things are as important as once I did - yes, I am lucky that we have a nice house in a beautiful area, but I am not fussed about having a newer car or the latest trendy kitchen/garden/technology "must-have" (although I have to confess to having upgraded to the iPhone 4s - I never said I was perfect!!). I have realised that all that really matters is health, family, friends and love.
I make no apologies for sounding like a mawkishly sentimental Pollyanna today. This is how I feel. I've had a lot of time to reflect on life over the last year and although this time last year I had no idea of what a bumpy ride I was going to have, it became clear within a few weeks, so I had to get used to this new set of realities fairly quickly. I think that, on the whole, I've coped.....okay. There have been bad days and there have been good days. In recent months I have had more good days than bad and I know that I have effective coping strategies for the bad days. When I look back at what's happened to me and my family over the past couple of years, we've coped with my brother dying at the age of 47, our daughter travelling to some of the most dangerous parts of the world, my diagnosis and treatment, my mum being sectioned and then moved into a care home after being diagnosed with dementia - that's quite a list of things. The important thing is that we have coped and we will continue to cope with what happens next. The only thing we know for sure is that I will have more surgery to my face. As for the oncology side - my latest check-up, on Friday of last week, was fine and that's all I can be sure of. I am as healthy as my last check-up. At the moment, the gap between appointments is one month, but I am hopeful that this will gradually be extended as I (fingers crossed) start to have consistently clear results from the physical examinations.
While this blog post contains a lot of looking back, there's a lot of looking forward too. I think that's how I am living my life at the moment - reflection, processing, anticipation and hoping. Is this so different from everyone else's life? I suspect not.
You'd think, after all my body has coped with over the past year, that a cold would be something I could take in my stride, wouldn't you? But no, it knocked me for six. I suppose that might mean that my immune system is not yet back up to full speed. Of course, this meant no exercise for several days, so I am feeling a bit antsy and fed-up about that. Back to the gym tonight to an aerobics class, which I hope to manage without having to stop for a coughing fit - if I can do that, I know I am on the road to full recovery.
Talking of all my body has dealt with over the past year brings me to another reason why I haven't posted. On Saturday, the 17th of March, it was exactly one year since I first felt the lumps in my jaw and thought that something wasn't quite right. Little did I realise then just how big an impact those two little lumps would have. This time last year I was blithely thinking that I had some kind of infection and my glands had swollen up to fight it - yes, unusually only on one side, but I didn't think that was anything untoward. I do tend to think of events as "BC" or "AD" - Before Cancer and After Diagnosis, as if finding out I had cancer caused a seismic shift in my world. Did it? An interesting question - I look at my life and so much of it is the same: same husband and children, same friends (for the most part - one or two whom I thought would be more actively interested went very quiet very early and have stayed that way and conversely, some people have stepped up to the plate and proved themselves to be trusty companions), same house, same lifestyle, same interests....when I look at it like that, not much has changed.
And yet......I feel changed. I feel - I know! - that my approach to life has altered. I feel that, having been given what to me I can only describe as a second chance at life, I have been given the most precious gift: time on this earth. That fills me with such a deep appreciation and thankfulness for all the wonderful work of our NHS and the love and support of my family and friends that I hope I never take any of them for granted again. I feel that I have a renewed appreciation of the simpler things in life, too - I have found such gentle pleasure in listening to birdsong, watching our cats move from one sunny spot to another as the sun moves around the garden, seeing plants and flowers change over the seasons. Nothing sophisticated involved, just nature doing what she does. I don't feel that material things are as important as once I did - yes, I am lucky that we have a nice house in a beautiful area, but I am not fussed about having a newer car or the latest trendy kitchen/garden/technology "must-have" (although I have to confess to having upgraded to the iPhone 4s - I never said I was perfect!!). I have realised that all that really matters is health, family, friends and love.
I make no apologies for sounding like a mawkishly sentimental Pollyanna today. This is how I feel. I've had a lot of time to reflect on life over the last year and although this time last year I had no idea of what a bumpy ride I was going to have, it became clear within a few weeks, so I had to get used to this new set of realities fairly quickly. I think that, on the whole, I've coped.....okay. There have been bad days and there have been good days. In recent months I have had more good days than bad and I know that I have effective coping strategies for the bad days. When I look back at what's happened to me and my family over the past couple of years, we've coped with my brother dying at the age of 47, our daughter travelling to some of the most dangerous parts of the world, my diagnosis and treatment, my mum being sectioned and then moved into a care home after being diagnosed with dementia - that's quite a list of things. The important thing is that we have coped and we will continue to cope with what happens next. The only thing we know for sure is that I will have more surgery to my face. As for the oncology side - my latest check-up, on Friday of last week, was fine and that's all I can be sure of. I am as healthy as my last check-up. At the moment, the gap between appointments is one month, but I am hopeful that this will gradually be extended as I (fingers crossed) start to have consistently clear results from the physical examinations.
While this blog post contains a lot of looking back, there's a lot of looking forward too. I think that's how I am living my life at the moment - reflection, processing, anticipation and hoping. Is this so different from everyone else's life? I suspect not.
Tuesday, 14 February 2012
Boom, boom, boom, boom!
What do you do when you think you might get bad news, you prepare for how you might react if you get bad news and then, when it turns out the news is good, you haven't thought about how that might feel? That's just how I feel, even today, four days after getting my fabulously welcome news about there being no signs of cancer in me.
I worry that I might seem blase about the news - believe me, I am anything but! I am immensely thankful and deeply, deeply grateful to our wonderful NHS for the care they have taken of me at every stage of this frightening, turbulent process. It's just that I still feel a bit - well, "numb" is the best word I can think of to describe it. It's almost as if I have schooled myself over the past year not to expect the news to be good, so when it is, I have forgotten how to feel!
That makes a kind of sense to me and I suspect it's a kind of protection mechanism I have built up around me so that I didn't/don't get disappointed when the news turns out to be not so good. I am pretty certain that at some point, the reality will kick in and that's when I will react. It might take the form of manic giggling, or a bit of a sob, or even a snivelling snotfest of crying, but it will almost certainly happen at some point. In the meantime, I'm just getting on with things and starting to plan a bit further ahead than I have done in recent months. Without wanting to sound defeatist or morbid, for a large part of last year I couldn't see beyond Christmas 2011, simply because I wasn't entirely convinced that I would be around after that time. Don't judge me, don't call me pessimistic, don't think I had lost the will to live because I absolutely hadn't. I just couldn't get my mind to behave differently. It's great to be able to think "Yes, I can look further ahead and plan for 2012, 2013 and beyond."
Right, enough of the introspection! What has happened since hospital on Friday and my good news? We had a lovely guest for the weekend, a Norwegian friend of our daughter's, whom she met while backpacking around SE Asia. We didn't see that much of either of them over the weekend, as they were meeting up with other friends from their travels up in London and staying up there on Saturday night. Our house was the meeting point for some of these other friends too, so there were plenty of young people around over the weekend to infuse the house with energy and laughter! I think Maddy enjoyed sampling a cooked English breakfast and a roast dinner (I was under strict instructions to make Yorkshire puddings, bread sauce and roast parsnips! Being a good mum, I did as I was told, of course....). Maddy left today and we hope she'll come and see us again - her English is superb (and infinitely better than our Norwegian!)and she drinks almost as much tea as we do :-).
Neil and I went out for a lovely, celebratory meal on Friday night and then were out for dinner again on Saturday, at our good friends' home. Ample amounts of fizzy were sipped over the two days, as we marked the milestone of Friday.
Yesterday I went to visit a friend who has broken her ankle/leg really badly and has to spend all day with her foot up on a stool, hobbling around on crutches only when necessary. She was very good visiting me last year when I was convalescing at home, so I was pleased to be able to do something in return. I do think that when something happens to you that makes you feel unwell, upset, restricts your mobility or independence, then it is a huge upset in your world - sometimes people have said to me over the past year that what's happened to them is nothing compared to what's happened to me, but I don't agree. I think that we are all affected to different degrees by the events in our lives and what might seem trivial to one person can be devastating in its effect on someone else. I hope that I never start to think "Well, you think *you've* got problems? Wait till I tell you what *I've* been through!" because that would mean that I had lost a degree of compassion.
Today - and this is where the "Boom, boom, boom, boom" comes from - we held a drumming workshop at my church for local school-children. I went along to help and ended up taking part ("Oh, surely not?", you murmur....). I ended up banging on the big bass drum and also the tom-tom drums. Great fun!
Of course, it's Valentine's Day today, when we tell the one we love how much they mean to us. I cannot find words enough to tell Neil how much he means to me. He has been my emotional foundation and rock over not just this past year, but our entire marriage. I couldn't be without him and I feel like this every day, not just Valentine's Day.
Oh, and I joined Twitter - thought about it long and hard and decided that it might help me get some more exposure for this blog and hence raise some awareness of what it's like to deal with cancer and facial palsy. It's good to think yes, I am a cancer survivor. And my face? I had surgery to save my life and it left my face a bit wonky. It is the better alternative!!
I worry that I might seem blase about the news - believe me, I am anything but! I am immensely thankful and deeply, deeply grateful to our wonderful NHS for the care they have taken of me at every stage of this frightening, turbulent process. It's just that I still feel a bit - well, "numb" is the best word I can think of to describe it. It's almost as if I have schooled myself over the past year not to expect the news to be good, so when it is, I have forgotten how to feel!
That makes a kind of sense to me and I suspect it's a kind of protection mechanism I have built up around me so that I didn't/don't get disappointed when the news turns out to be not so good. I am pretty certain that at some point, the reality will kick in and that's when I will react. It might take the form of manic giggling, or a bit of a sob, or even a snivelling snotfest of crying, but it will almost certainly happen at some point. In the meantime, I'm just getting on with things and starting to plan a bit further ahead than I have done in recent months. Without wanting to sound defeatist or morbid, for a large part of last year I couldn't see beyond Christmas 2011, simply because I wasn't entirely convinced that I would be around after that time. Don't judge me, don't call me pessimistic, don't think I had lost the will to live because I absolutely hadn't. I just couldn't get my mind to behave differently. It's great to be able to think "Yes, I can look further ahead and plan for 2012, 2013 and beyond."
Right, enough of the introspection! What has happened since hospital on Friday and my good news? We had a lovely guest for the weekend, a Norwegian friend of our daughter's, whom she met while backpacking around SE Asia. We didn't see that much of either of them over the weekend, as they were meeting up with other friends from their travels up in London and staying up there on Saturday night. Our house was the meeting point for some of these other friends too, so there were plenty of young people around over the weekend to infuse the house with energy and laughter! I think Maddy enjoyed sampling a cooked English breakfast and a roast dinner (I was under strict instructions to make Yorkshire puddings, bread sauce and roast parsnips! Being a good mum, I did as I was told, of course....). Maddy left today and we hope she'll come and see us again - her English is superb (and infinitely better than our Norwegian!)and she drinks almost as much tea as we do :-).
Neil and I went out for a lovely, celebratory meal on Friday night and then were out for dinner again on Saturday, at our good friends' home. Ample amounts of fizzy were sipped over the two days, as we marked the milestone of Friday.
Yesterday I went to visit a friend who has broken her ankle/leg really badly and has to spend all day with her foot up on a stool, hobbling around on crutches only when necessary. She was very good visiting me last year when I was convalescing at home, so I was pleased to be able to do something in return. I do think that when something happens to you that makes you feel unwell, upset, restricts your mobility or independence, then it is a huge upset in your world - sometimes people have said to me over the past year that what's happened to them is nothing compared to what's happened to me, but I don't agree. I think that we are all affected to different degrees by the events in our lives and what might seem trivial to one person can be devastating in its effect on someone else. I hope that I never start to think "Well, you think *you've* got problems? Wait till I tell you what *I've* been through!" because that would mean that I had lost a degree of compassion.
Today - and this is where the "Boom, boom, boom, boom" comes from - we held a drumming workshop at my church for local school-children. I went along to help and ended up taking part ("Oh, surely not?", you murmur....). I ended up banging on the big bass drum and also the tom-tom drums. Great fun!
Of course, it's Valentine's Day today, when we tell the one we love how much they mean to us. I cannot find words enough to tell Neil how much he means to me. He has been my emotional foundation and rock over not just this past year, but our entire marriage. I couldn't be without him and I feel like this every day, not just Valentine's Day.
Oh, and I joined Twitter - thought about it long and hard and decided that it might help me get some more exposure for this blog and hence raise some awareness of what it's like to deal with cancer and facial palsy. It's good to think yes, I am a cancer survivor. And my face? I had surgery to save my life and it left my face a bit wonky. It is the better alternative!!
Friday, 13 January 2012
Great day out - then back to earth with a bump - or rather lump!
I posted on Facebook that I would blog about my Big Day Out yesterday so, as promised, here is the story of My Trip to London.
My friend from uni, Fin, had very generously invited me, along with two other uni friends, Gill and Ron, to go to a matinee performance of Ghost - the Musical and then for a Chinese meal. We arranged to meet in a pub near the theatre. I don't often go up to London for social events, although I have worked in London most of my working life, so I always feel a bit like the country mouse come to town when I go. I also hadn't been to London on my own since the summer, when I had to go to two hospital appointments in London. I've been up twice in the evenings for social events, both times with Neil, so this was going to be my first time using public transport late at night on my own. Even earlier this week, I balked at the thought and indeed, I cancelled going to a meeting in London on Monday early evening, largely because I still felt uneasy at the thought of being on a train with loads of people. However, my trip to Bluewater gave my confidence a boost and I felt perfectly able to cope.
The journey to London was fine; I negotiated the train and tube and found the pub without too much difficulty, despite my inability to look at a map and figure out which way I need to go. I was the first to get to the pub, although Fin arrived about two minutes after I did! Ron arrived later and Gill couldn't get away from work until a bit later, so Fin and I had the chance for a wee catch-up. His lovely wife Anne, who was also at uni with us, died of cancer just over nine years ago, so he is sadly familiar with what it feels like to be riding the cancer train and we shared some experiences and feelings. I found it really helpful to talk to someone who's been there and knows about the uncertainties and worries.
However, the day was about old friends getting together for a good blether, so we didn't dwell on it and didn't get maudlin. This was a day for reminiscing and enjoying each others' company. It was strange (in an amazingly happy way) how the years rolled away and suddenly it felt as if we were all 19 again, learning how to be independent, form our own opinions rather than reflect our parents', making mistakes and having fun. Isn't it great when that happens and you pick up from where you left off so easily?
We met Gill at the theatre and Fin arranged for us to have a glass of champagne before the start of the performance - I love the way you can get plastic champagne flutes now and can take your drink into the auditorium, because just as we sat down to sip our drink, the five minute bell rang! In we trotted and took our seats - and what great seats they were! We had a perfect view of the stage, close enough to see everything but without having to crane our necks upwards. The show was amazing - if you've seen the film Ghost, you will know the story - and the musical is faithful to the story but obviously injects a lot of song into it. And what songs! - the music is superb and the singing was excellent. The two young leads were completely convincing (the male lead, Richard Fleeshman, had played Craig Harris, Rosie's goth boyfriend, when he was but a lad) and the Oda Mae Brown/Rita Miller character was brilliant. The special effects were incredible - the sets changed quickly, taking you from the loft apartment to a busy banking office, to the New York subway, to a city street, with the most effective lighting. All in all, a wonderful production which had me laughing one minute and in tears the next. There was a standing ovation for the leads, who were doing their last two London performances yesterday before transferring to Broadway.
Fin had arranged for champagne during the interval (we had to use plastic flutes again as we didn't finish it before the second half bell rang and we were determined not to leave any in the bottle!) and, as if all this weren't enough, he also arranged for us to go backstage after the performance and meet the cast leads. They were so friendly and happy to chat to us for a few minutes, even though they had an evening performance to prepare for.
This day out was turning out to be pretty amazing! We adjourned to the Criterion restaurant where we had a bottle of Bollinger - I felt like Patsy from AbFab but without the beehive and drug habit. Oh, and minus about eight inches in height! So actually, not that much like her, now I come to think of it! The Criterion was an oasis of calm in the midst of the bustle of London - in fact, it reminded me of being in a place like Cafe Florian in Venice, or a traditional coffee-house in Salzburg. Then off to the Chinese restaurant for a veritable feast. I stuffed my little belly to the brim - and yes, there was more champagne!
We had a great catch-up: lots of "whatever happened to....?" and a bit of Google searching to try and find out! With all four of us being Scottish, we had a good old grumble about declining standards of spelling and grammar - oh yes, our inner pedants were proudly outed!
Last trains beckoned and we had to bring the evening to a close and make our ways home. Arm in arm, we trotted down to Embankment station and said our farewells (Ron and Gill are married, so set off together on their long journey home, Fin lives within walking distance of Embankment and I had to get to Victoria and catch my train)with promises to meet up again soon. My lovely husband Neil came and met me at the station so I didn't have to walk up the road on my own in the dark (I've done it loads of times on my own before but there's still a bit of self-confidence I need to refind).
Our friend Fin literally treated us to the whole day and wouldn't let any of us even buy a drink - thank you, Fin, for your wonderful kindness and generosity. Being with old friends from those formative and special years was a real privilege and we've decided we need to start putting dates in the diary for us to meet again so we actually meet on a more regular basis.
After such a positive two days, I woke up this morning feeling pretty good. I had my usual monthly check-up at the Marsden and was anticipating that everything would be fine, as it has been the past several visits. When I was making the appointment in December, the receptionist asked if I was okay with it being Friday the 13th... "Yes, of course," I replied. Cue a hollow laugh.....
First off, Adam was supposed to come with me and then we were going to do a bit of shopping. He had gone down to his friend's place in Brighton yesterday and was driving back this morning in time to come with me to the Marsden. At half nine, he called to say he was on the motorway with a flat tyre and no jack! Luckily he is in the AA and was able to get them to sort him out, but he wasn't back in time to go with me to hospital so I had to go on my own - which, under normal circumstances, would have been fine. I was planning on going to Ikea afterwards to check out some wardrobes for Amy's room, so my day was pretty much planned.
I saw my consultant, told him I was feeling good, was back at the gym, planning on doing the London marathon, etc etc. I wanted him to check that there wasn't any inflammation hanging around that might compromise my PET CT scan next month, so he had a look inside my mouth, under my tongue, down my throat etc., and pronounced that everything was looking good. Then he did an external physical examination and pushed and prodded my neck. Then he pushed and prodded a bit more...and a bit more.....and then said "Hmmm, there's a lymph node there that feels a bit soft. I think we'll get that looked at so let's just arrange an ultrasound scan, today if we can. No need to worry." How often have I heard those words since I first noticed those lumps on my jaw last March? Far too often. And do I believe them? Actually, no. Experience teaches me that there is usually every reason to worry.
I was slotted in as an urgent ultrasound, which meant waiting for a couple of hours until the radiologist had an opportunity to see me in between patients with booked appointments. I really appreciate the doctor making the time available to see me (being a polite little person, I did tell him this). The consultant had said that the radiologist would take a tissue sample if he thought there was anything to be concerned about and that, in any case, the ultrasound would be discussed at the MDT next Wednesday, so I had to make an appointment to go back next week, which feels like - and indeed, is - a backward step, going back to weekly check-ups.
You can imagine the state of nervousness and anxiety as I lay on the bed, watching the radiologist peering intently at the screen as he moved the probe over my neck. "Turn your head this way, please." "Now this way." "Now this way again, please". Just as I was waiting for his next words to be "I need to take a fine needle aspiration now", he said the sweetest words I could have heard - "I can't see any mass, so no need to take a sample. It all looks fine to me." You can imagine the sense of relief I felt.
I left the hospital and phoned Neil as I walked to the car park to let him know what had gone on and that's when it hit me. I got a bit weepy, largely out of relief but also the sad recognition that this is what it's going to be like from now on...any lump, unexpected bump or ache and it will have to be checked out, with that constant feeling of dread that it's going to turn out to be bad news. There's no real escape from this disease - it may recede to the back of my mind, but it's always there, worming its way to the front from time to time.
I think that it hit me harder today because the past couple of days have been so positive and forward-looking. However, I coped with being at the hospital on my own, waiting for the scan on my own, hearing the doctor's opinion on my own, so I'm stronger than I maybe thought I was. I'm not sure I would have coped with it a month or two ago without getting worked up and upset immediately the consultant spotted something a bit unusual.
So, back to the reality of living with a cancer dx. There it is, whispering away in its nasty, evil, sibilant way.... "Just when you think it's all going your way, just remember I'm sitting here in the background and I might just come back for another little visit." Well, nasty cancer, you can just stay away from me because I don't want you back!
My friend from uni, Fin, had very generously invited me, along with two other uni friends, Gill and Ron, to go to a matinee performance of Ghost - the Musical and then for a Chinese meal. We arranged to meet in a pub near the theatre. I don't often go up to London for social events, although I have worked in London most of my working life, so I always feel a bit like the country mouse come to town when I go. I also hadn't been to London on my own since the summer, when I had to go to two hospital appointments in London. I've been up twice in the evenings for social events, both times with Neil, so this was going to be my first time using public transport late at night on my own. Even earlier this week, I balked at the thought and indeed, I cancelled going to a meeting in London on Monday early evening, largely because I still felt uneasy at the thought of being on a train with loads of people. However, my trip to Bluewater gave my confidence a boost and I felt perfectly able to cope.
The journey to London was fine; I negotiated the train and tube and found the pub without too much difficulty, despite my inability to look at a map and figure out which way I need to go. I was the first to get to the pub, although Fin arrived about two minutes after I did! Ron arrived later and Gill couldn't get away from work until a bit later, so Fin and I had the chance for a wee catch-up. His lovely wife Anne, who was also at uni with us, died of cancer just over nine years ago, so he is sadly familiar with what it feels like to be riding the cancer train and we shared some experiences and feelings. I found it really helpful to talk to someone who's been there and knows about the uncertainties and worries.
However, the day was about old friends getting together for a good blether, so we didn't dwell on it and didn't get maudlin. This was a day for reminiscing and enjoying each others' company. It was strange (in an amazingly happy way) how the years rolled away and suddenly it felt as if we were all 19 again, learning how to be independent, form our own opinions rather than reflect our parents', making mistakes and having fun. Isn't it great when that happens and you pick up from where you left off so easily?
We met Gill at the theatre and Fin arranged for us to have a glass of champagne before the start of the performance - I love the way you can get plastic champagne flutes now and can take your drink into the auditorium, because just as we sat down to sip our drink, the five minute bell rang! In we trotted and took our seats - and what great seats they were! We had a perfect view of the stage, close enough to see everything but without having to crane our necks upwards. The show was amazing - if you've seen the film Ghost, you will know the story - and the musical is faithful to the story but obviously injects a lot of song into it. And what songs! - the music is superb and the singing was excellent. The two young leads were completely convincing (the male lead, Richard Fleeshman, had played Craig Harris, Rosie's goth boyfriend, when he was but a lad) and the Oda Mae Brown/Rita Miller character was brilliant. The special effects were incredible - the sets changed quickly, taking you from the loft apartment to a busy banking office, to the New York subway, to a city street, with the most effective lighting. All in all, a wonderful production which had me laughing one minute and in tears the next. There was a standing ovation for the leads, who were doing their last two London performances yesterday before transferring to Broadway.
Fin had arranged for champagne during the interval (we had to use plastic flutes again as we didn't finish it before the second half bell rang and we were determined not to leave any in the bottle!) and, as if all this weren't enough, he also arranged for us to go backstage after the performance and meet the cast leads. They were so friendly and happy to chat to us for a few minutes, even though they had an evening performance to prepare for.
This day out was turning out to be pretty amazing! We adjourned to the Criterion restaurant where we had a bottle of Bollinger - I felt like Patsy from AbFab but without the beehive and drug habit. Oh, and minus about eight inches in height! So actually, not that much like her, now I come to think of it! The Criterion was an oasis of calm in the midst of the bustle of London - in fact, it reminded me of being in a place like Cafe Florian in Venice, or a traditional coffee-house in Salzburg. Then off to the Chinese restaurant for a veritable feast. I stuffed my little belly to the brim - and yes, there was more champagne!
We had a great catch-up: lots of "whatever happened to....?" and a bit of Google searching to try and find out! With all four of us being Scottish, we had a good old grumble about declining standards of spelling and grammar - oh yes, our inner pedants were proudly outed!
Last trains beckoned and we had to bring the evening to a close and make our ways home. Arm in arm, we trotted down to Embankment station and said our farewells (Ron and Gill are married, so set off together on their long journey home, Fin lives within walking distance of Embankment and I had to get to Victoria and catch my train)with promises to meet up again soon. My lovely husband Neil came and met me at the station so I didn't have to walk up the road on my own in the dark (I've done it loads of times on my own before but there's still a bit of self-confidence I need to refind).
Our friend Fin literally treated us to the whole day and wouldn't let any of us even buy a drink - thank you, Fin, for your wonderful kindness and generosity. Being with old friends from those formative and special years was a real privilege and we've decided we need to start putting dates in the diary for us to meet again so we actually meet on a more regular basis.
After such a positive two days, I woke up this morning feeling pretty good. I had my usual monthly check-up at the Marsden and was anticipating that everything would be fine, as it has been the past several visits. When I was making the appointment in December, the receptionist asked if I was okay with it being Friday the 13th... "Yes, of course," I replied. Cue a hollow laugh.....
First off, Adam was supposed to come with me and then we were going to do a bit of shopping. He had gone down to his friend's place in Brighton yesterday and was driving back this morning in time to come with me to the Marsden. At half nine, he called to say he was on the motorway with a flat tyre and no jack! Luckily he is in the AA and was able to get them to sort him out, but he wasn't back in time to go with me to hospital so I had to go on my own - which, under normal circumstances, would have been fine. I was planning on going to Ikea afterwards to check out some wardrobes for Amy's room, so my day was pretty much planned.
I saw my consultant, told him I was feeling good, was back at the gym, planning on doing the London marathon, etc etc. I wanted him to check that there wasn't any inflammation hanging around that might compromise my PET CT scan next month, so he had a look inside my mouth, under my tongue, down my throat etc., and pronounced that everything was looking good. Then he did an external physical examination and pushed and prodded my neck. Then he pushed and prodded a bit more...and a bit more.....and then said "Hmmm, there's a lymph node there that feels a bit soft. I think we'll get that looked at so let's just arrange an ultrasound scan, today if we can. No need to worry." How often have I heard those words since I first noticed those lumps on my jaw last March? Far too often. And do I believe them? Actually, no. Experience teaches me that there is usually every reason to worry.
I was slotted in as an urgent ultrasound, which meant waiting for a couple of hours until the radiologist had an opportunity to see me in between patients with booked appointments. I really appreciate the doctor making the time available to see me (being a polite little person, I did tell him this). The consultant had said that the radiologist would take a tissue sample if he thought there was anything to be concerned about and that, in any case, the ultrasound would be discussed at the MDT next Wednesday, so I had to make an appointment to go back next week, which feels like - and indeed, is - a backward step, going back to weekly check-ups.
You can imagine the state of nervousness and anxiety as I lay on the bed, watching the radiologist peering intently at the screen as he moved the probe over my neck. "Turn your head this way, please." "Now this way." "Now this way again, please". Just as I was waiting for his next words to be "I need to take a fine needle aspiration now", he said the sweetest words I could have heard - "I can't see any mass, so no need to take a sample. It all looks fine to me." You can imagine the sense of relief I felt.
I left the hospital and phoned Neil as I walked to the car park to let him know what had gone on and that's when it hit me. I got a bit weepy, largely out of relief but also the sad recognition that this is what it's going to be like from now on...any lump, unexpected bump or ache and it will have to be checked out, with that constant feeling of dread that it's going to turn out to be bad news. There's no real escape from this disease - it may recede to the back of my mind, but it's always there, worming its way to the front from time to time.
I think that it hit me harder today because the past couple of days have been so positive and forward-looking. However, I coped with being at the hospital on my own, waiting for the scan on my own, hearing the doctor's opinion on my own, so I'm stronger than I maybe thought I was. I'm not sure I would have coped with it a month or two ago without getting worked up and upset immediately the consultant spotted something a bit unusual.
So, back to the reality of living with a cancer dx. There it is, whispering away in its nasty, evil, sibilant way.... "Just when you think it's all going your way, just remember I'm sitting here in the background and I might just come back for another little visit." Well, nasty cancer, you can just stay away from me because I don't want you back!
Sunday, 27 November 2011
Orcadian Strip the Willow - och aye the noo......
Sunday afternoon and it's already getting dark - I shall be so relieved when the days start lengthening again. I really dislike these short days and hate the day the clocks go back with a passion, because I know it leads to ever decreasing days and ever lengthening nights.
Since I last posted, I have had more friends round for lunch. On Friday, two friends I know from Runners World, Geves and Debs, came all the way down from the depths of Essex to visit me for a few hours. It was so good to see them and we had a great old chat and catch-up. I have been so grateful that so many friends have been willing to make the journey out to see me. I enjoy company, although I still feel a bit nervous and apprehensive before seeing friends for the first time since all this happened, because I do worry about what they will think when they see my different face. But after a few minutes, I think we all tend to forget about it, especially when we get stuck into a bit of gossip and a giggle!
I went to the gym again on Friday morning. As before, I took it slowly and steadily and did some lateral pull-downs to give my left shoulder a bit of physio. Although I was signed off by the physio a few months ago, I think I need to get into the habit of doing some regular stretches and exercises to try and regain/retain movement. I am convinced that exercise is going to be vital in dealing with my depression - even after just two gym sessions, I feel more positive and more as if I am returning to normal (albeit a different normal from before). Just doing something I used to enjoy doing before all this happened, even if I am doing it at a much lower level, makes me feel that fragments of my old life are falling back into place. By the time I see my GP to discuss my depression and possible treatments later this week, I hope to have done another couple of sessions at the gym, so I should be able to talk meaningfully with him about the value of exercise. However, if between us we decide that I need some additional help from medication, then so be it. I won't refuse out of pig-headedness but I want to be sure that the decision is reached after proper discussion.
Last night we had a Scottish evening at my church, with country dancing, songs, Burns poetry and a few other Caledonian gems. I had suggested this as a social event at the beginning of the year but then wasn't able to play much of a part in planning it all, but I did manage to get hold of some posters courtesy of VisitScotland and my friend Linda was brilliant and sent me loads of tartan ribbon and St Andrew's flags so I was i/c decoration on the day itself, which meant I could feel part of it without having to get really involved in cooking and serving food! I did make two trifles as my contribution to the repast, but they were pretty straightforward and quick to make. Neil helped set up all the tables and then helped dismantle everything at the end of the evening. Because we started at about half six, it meant we were home and flopped on the sofa before ten pm, which was very welcome! I feel very tired today, but that's probably because I was unable to resist the opportunity to do some Scottish dancing and got up a couple of times. Bit of a mistake, as I am weary now, but it was such fun and just felt so good to be doing something active and sociable.
I don't want to tempt fate by speaking too soon, but I really do feel that just over the last week or so, I have turned a bit of a corner and feel so much better than I have done for the past few months. I have more energy, both physically and mentally - I want to do things, to get involved with events and people. There's still that feeling of trepidation and self-consciousness about my face, but I think it's a good sign that I am getting involved in social things. We have our local Christmas shopping evening this Thursday, when all the shops stay open, the high street is closed to traffic and there's a great sense of excitement and Christmas anticipation. We always go along and see lots of our friends and this year will be no different, so I am looking forward to going to that (with the usual provisos!).
Anyway, I hope this positive feeling continues although I am realistic enough to know that there will still be dark moments ahead. I still need to learn to let go of this need to be always in control and always coping, but at the moment I am okay. One of the people I was talking to last night (she was in the dance group which did some demo Scottish dances for us, and I know her anyway but hadn't seen her since I was ill - clearly I don't know her that well!) - anyway, after that very rambling bit in parentheses, the point I wanted to make is that she is a doctor and was able to give me a bit of reassurance, in a very straightforward way, that it was extremely unlikely that cancer in the parotid gland would be a secondary cancer so the likelihood is that it is the primary (which has still never been confirmed!) and that I looked so much better than she would have expected me to look at this stage in my recovery. She also said we are absolutely right to push my consultant for a PET CT scan, to try and get the peace of mind Neil and I both feel we need. Another friend, who is an anaesthetist, also said we are right to push for this scan, so we feel comforted to know that we're not being unreasonable in asking the question.
I have another busy week this coming week, with friends coming for lunch on Monday, Tuesday and Wednesday. I also have my speech therapist on Tuesday (when I shall ask about how I can protect my facial muscles when running), GP on Thursday followed by dental hygienist at the Marsden, and another friend coming over on Friday afternoon. She has been through radiotherapy and chemo this year, so we can empathise with each other! Factor in the Christmas shopping evening and an attempt to get to the Open Day at the Orpheus Centre to see where Amy works, and it's a pretty full-on week! I am no longer feeling the need to have a rest during the day, so my energy levels must be increasing, given the way I seem to have become a Lady who Lunches :-)
Since I last posted, I have had more friends round for lunch. On Friday, two friends I know from Runners World, Geves and Debs, came all the way down from the depths of Essex to visit me for a few hours. It was so good to see them and we had a great old chat and catch-up. I have been so grateful that so many friends have been willing to make the journey out to see me. I enjoy company, although I still feel a bit nervous and apprehensive before seeing friends for the first time since all this happened, because I do worry about what they will think when they see my different face. But after a few minutes, I think we all tend to forget about it, especially when we get stuck into a bit of gossip and a giggle!
I went to the gym again on Friday morning. As before, I took it slowly and steadily and did some lateral pull-downs to give my left shoulder a bit of physio. Although I was signed off by the physio a few months ago, I think I need to get into the habit of doing some regular stretches and exercises to try and regain/retain movement. I am convinced that exercise is going to be vital in dealing with my depression - even after just two gym sessions, I feel more positive and more as if I am returning to normal (albeit a different normal from before). Just doing something I used to enjoy doing before all this happened, even if I am doing it at a much lower level, makes me feel that fragments of my old life are falling back into place. By the time I see my GP to discuss my depression and possible treatments later this week, I hope to have done another couple of sessions at the gym, so I should be able to talk meaningfully with him about the value of exercise. However, if between us we decide that I need some additional help from medication, then so be it. I won't refuse out of pig-headedness but I want to be sure that the decision is reached after proper discussion.
Last night we had a Scottish evening at my church, with country dancing, songs, Burns poetry and a few other Caledonian gems. I had suggested this as a social event at the beginning of the year but then wasn't able to play much of a part in planning it all, but I did manage to get hold of some posters courtesy of VisitScotland and my friend Linda was brilliant and sent me loads of tartan ribbon and St Andrew's flags so I was i/c decoration on the day itself, which meant I could feel part of it without having to get really involved in cooking and serving food! I did make two trifles as my contribution to the repast, but they were pretty straightforward and quick to make. Neil helped set up all the tables and then helped dismantle everything at the end of the evening. Because we started at about half six, it meant we were home and flopped on the sofa before ten pm, which was very welcome! I feel very tired today, but that's probably because I was unable to resist the opportunity to do some Scottish dancing and got up a couple of times. Bit of a mistake, as I am weary now, but it was such fun and just felt so good to be doing something active and sociable.
I don't want to tempt fate by speaking too soon, but I really do feel that just over the last week or so, I have turned a bit of a corner and feel so much better than I have done for the past few months. I have more energy, both physically and mentally - I want to do things, to get involved with events and people. There's still that feeling of trepidation and self-consciousness about my face, but I think it's a good sign that I am getting involved in social things. We have our local Christmas shopping evening this Thursday, when all the shops stay open, the high street is closed to traffic and there's a great sense of excitement and Christmas anticipation. We always go along and see lots of our friends and this year will be no different, so I am looking forward to going to that (with the usual provisos!).
Anyway, I hope this positive feeling continues although I am realistic enough to know that there will still be dark moments ahead. I still need to learn to let go of this need to be always in control and always coping, but at the moment I am okay. One of the people I was talking to last night (she was in the dance group which did some demo Scottish dances for us, and I know her anyway but hadn't seen her since I was ill - clearly I don't know her that well!) - anyway, after that very rambling bit in parentheses, the point I wanted to make is that she is a doctor and was able to give me a bit of reassurance, in a very straightforward way, that it was extremely unlikely that cancer in the parotid gland would be a secondary cancer so the likelihood is that it is the primary (which has still never been confirmed!) and that I looked so much better than she would have expected me to look at this stage in my recovery. She also said we are absolutely right to push my consultant for a PET CT scan, to try and get the peace of mind Neil and I both feel we need. Another friend, who is an anaesthetist, also said we are right to push for this scan, so we feel comforted to know that we're not being unreasonable in asking the question.
I have another busy week this coming week, with friends coming for lunch on Monday, Tuesday and Wednesday. I also have my speech therapist on Tuesday (when I shall ask about how I can protect my facial muscles when running), GP on Thursday followed by dental hygienist at the Marsden, and another friend coming over on Friday afternoon. She has been through radiotherapy and chemo this year, so we can empathise with each other! Factor in the Christmas shopping evening and an attempt to get to the Open Day at the Orpheus Centre to see where Amy works, and it's a pretty full-on week! I am no longer feeling the need to have a rest during the day, so my energy levels must be increasing, given the way I seem to have become a Lady who Lunches :-)
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