Tuesday, 25 October 2011

Here I am again!

First of all, thank you for the supportive comments on my last blog post. A week in warm and sunny Spain with Neil put temporal and geographical distance between me and the disappointing visit to the plastic surgeon. We had a lovely relaxing time, although I managed to do a couple of walks - nothing on the scale of what I would normally do, but more than I have been doing in recent months. It felt good to be moving my legs and doing some uphill bits!

Given the fact that I had to take my electrodes and zapping machine, and a syringe of painkiller (no needle, though) on the plane, I was expecting to be called over to explain what this stuff was. Although the security staff took a long time looking at my bag on the x-ray machine, including calling over an additional two staff to have a look, my bag came through fine. On the way home, at Malaga airport, I did get called over but not because of my medical items - oh no! I had committed the heinous crime of forgetting I had a bottle of Diet Coke in my bag and hadn't surrendered it :-) We thought that was quite funny!

I discovered while on holiday that I can now close my left eye independently of my right, which is something I haven't been able to do before, so that's another little bit of progress that I didn't expect. At least now I can wink with either eye, yay! I  came home to find a copy of the letter from the plastic surgeon to my original surgeon in which he says that while he doesn't think I am quite ready to have my eye reopened fully, he will refer me to the surgeon and that there's a pleasing amount of movement at the corners of my left eye and mouth, which suggests some branches of the nerve may have been spared. I wrote to my speech therapist, who had been at the meeting with the plastic surgeon, saying I had been disappointed that no surgery would be possible until 2013 and will wait for her response - she works very closely with the consultant so will have some useful insights for me, I hope. I am also going to make an appointment with my psychologist because I feel that I am struggling a bit at the moment and need to talk it through with someone who is detached from it all.

Meanwhile, my mum is in hospital and will be for another six weeks, almost certainly about to be diagnosed with dementia and unable to live on her own. Given that the last time I went to see her, she didn't recognise me, I can't imagine that she will recognise me now when I look so different! I want to go and see her but the thought of the journey is really daunting and the visit itself won't be relaxing. To be honest, I just don't feel strong enough either physically or mentally to do it at the moment, but I know I need to try and see her at some point before Christmas. I know that I have just travelled to Spain and back, but that was for an entirely different (and very necessary) reason and I was with Neil, so didn't have any pressure on me to deal with anything. Travelling to Scotland on my own, however I choose to travel (suspect driving isn't an option for me, so it would be either plane or train) will be pretty demanding. And of course, the guilt kicks in that I should drop everything and go up there. Ho hum.

On the plus side, our son is home from uni for his reading week (not much reading involved - I think it's more a recovery week!) so it's good to have him home again, although we had forgotten how much milk and peanut butter he consumes :-/ It's good to have all four of us round the table again at dinner-time.

Our friend Carl is still in a coma and his family has been told that the damage caused to his brain is irreparable and that he will never regain consciousness. As you can imagine, this has devastated them, even if it wasn't entirely unexpected, so they are much in our thoughts. Although he is breathing on his own, there is no other meaningful body function. It's a terribly sad time for them and for those of us who know them.

This post is a bit like the curate's egg, isn't it? There are some good bits and some bad bits - life's like that, I suppose.

As always, love and thanks to Neil, Amy and Adam for wrapping me up in their love and care. And thanks to all of my friends and wider family for all your support and thoughts. It might sound trite, but I really do appreciate it and it does make a difference.

Thursday, 13 October 2011

No new face just yet....

I am trying to be a bit more disciplined about updating my blog, rather than wait for a couple of weeks before posting anything, but as my normal day-to-day routine is pretty monotonous, I can't see much point in posting every day - you'd get terrifically bored with it all, I can tell you!

However, today I had an appointment with the consultant plastic surgeon at Queen Victoria Hospital, to talk about what he might be able to do for my facial palsy and also to get on the waiting list. Way back in May, before I had my surgery, my (then) consultant said that nothing would happen in respect of aesthetic work on my face until about a year after my surgery. While that seems a long time, Neil and I both recognised that I would need to recover fully from the surgery and the subsequent radiotherapy and also that, because nerve regeneration is notoriously slow, enough time had to elapse to give my body the chance to recover as much as it could naturally. I guess I had pretty much assumed that, come May/June 2012, I would be beginning a programme of surgery to restore my face to something more approaching symmetry.

Imagine, then, my disappointment when the plastic surgeon said that he wouldn't do anything for two years after surgery, to make sure that it didn't interfere with any oncology that might be needed and to be sure that the cancer had gone. I understand the principle of it, but the thought of dragging this lumpen face around for another 19 months before anything can even begin to happen has really pulled me down. I feel as if I want to hide myself away until May 2013 and then restorative work can begin. I won't, of course, but I really feel as if some element of stability has now been taken away and I have to deal with it. I need to get my mind to the point where I feel strong enough to accept that, for the rest of this year, all of 2012 and a large part of 2013, I will have to take this wonky face with me wherever I go. I want to go back to work of some kind next year, but today the thought of boarding a commuter train and walking into an office fills me with stomach-clenching dread. And of course, the worry that further oncology might be necessary is very real.

There were a couple of small positives, I guess - there is definite movement of the eyebrow on the left side of my face (where previously there was none) and when I close my eyes tightly, the corner of my mouth moves slightly (again, no movement there previously) and when I smile (such as it is) the corner of my left eye creases (again, new movement). All tiny things, but by coincidence my speech therapist came in while we were with the consultant and she was very pleased with my progress. The consultant explained that the facial nerve has five branches and that the stems of a couple of the branches seem to be working, so I have to continue with the electrode stimulation (ooh err missus!) and he will see me in a year to review progress - a year!! However, I will continue to see the speech therapist for her to monitor me. I also asked about the possibility of having my eye opened up again and, after asking me to blink, close my eyes, screw them tightly shut etc, he said he would write to the surgeon who had performed my eye surgery and ask for a referral - who knows? It might happen, it might not. I have to say that I feel having two eyes the same size would make a big difference to me, but that was on the basis of having other facial work done next year.

I do find it hard to know that I will look the way I look now for such a long time. Once again, poor Neil has had to listen to my sobbing and squeaking (for some reason, when I'm upset my voice won't work properly!) about how ugly I feel and how I can't bear going out and seeing how people look at me etc etc. I know I said this in an earlier post, but I do have to steel myself to leave the house and be seen in public. I try to go out every day, even if it's just down to the local shop to get some milk or bread, otherwise there's a chance I would just stay at home all the time and not face anyone. But it is hard to go out, knowing how different I look, not just compared to my old face, but compared to most people's definition of "normal". Being stared at doesn't get any easier for me. I wish it would. And then I feel guilty for being upset about this, when our friend Carl is still in a coma and his wife and daughters would give anything for him to waken up and talk to them and wouldn't care what he looked like.

Finding it very hard today. I know that going away for a week will really help both Neil and me - just being away from hospital appointments and the normal daily routines will be so welcome. I feel bad for Neil that I am feeling upset and low just before we go away. I have also had to pull out of the Olympic volunteer programme, for which I had been interviewed and offered a post, because I just don't feel I can do it.

Sorry for such a miserable post. Neil, as always, keeps me sane and safe, tells me I am beautiful to him (I did get my hair done yesterday and am now more of a foxy redhead/brunette!) and supports me through everything. Add in my wonderful children, amazing friends and neighbours and actually, I am so very lucky. I do know this. I just feel it would be good to have some positive news on the medical front, after the last few months. At the moment, though, it's just "wait and see".

Saturday, 8 October 2011

Fainting, Meerkats, Friends and Family.....

I really must get into the habit of updating this blog more regularly - it's just that there doesn't really seem to be much happening! However, looking back over the 10 days or so since I last updated, in fact quite a lot has happened.

First of all, Amy started her new job at the Orpheus Centre this week. She started on Thursday and got invited out for lunch yesterday and for a drink after work, so she seems to be settling into it well - at least the social side! She and I went to Croydon on Tuesday to buy some smart clothes for her - although she worked as a teaching assistant before she went travelling, she didn't have to dress smartly and could wear jeans and t-shirts, but this role demands a bit more effort. Anyway, we decided to get the first off-peak train and avoid the rush hour. Of course, lots of people think this way (cheap fare, no miserable commuters :-)), so there was quite a crowd on the station and the train, when it arrived, turned out to have only two carriages - yes, Southern Rail does it again! Busiest train outside peak hour and they provide the smallest one possible. We boarded the train and sidled into a gap between a toddler in a pushchair and the door, where the little flip-down seats are. Amy and I were huddled together in the corner and as the journey progressed, I started feeling hotter and hotter. I shed my scarf, removed my cardigan, rolled up the sleeves of my top and still was sweaty and clammy. Just as we left South Croydon station, so very nearly at our destination, I muttered to Amy "I don't feel very well" and she replied "You don't feel very well?" and the next thing is I am being lowered onto a seat, with Amy and about eight people helping me, someone thrusting a bottle of water at me and me thinking "What on earth....?" Turn out I had, for the first time in my life, fainted. Amy says my eyes just rolled back in my head and then I collapsed onto her - luckily for the toddler in the pushchair, as he might not have appreciated me falling onto him! Luckily also, Amy is used, through her work with children with special needs, to children having seizures and the like, so she didn't panic and just calmly got some of the passengers to help her. All terribly embarrassing, but people were very kind and helpful, although I just wanted to get off the train as quickly as possible and disappear! After a drink of full-fat Coke, to get some sugar into me, the shopping expedition continued and, apart from a slight wobble in a very hot and stuffy shop, it was fine. Certainly didn't stop Amy and me managing a successful shop - unlike my last sortie into Croydon, I did actually manage to buy myself a few bits and pieces (and a new water jug for the kitchen!).

I did go to the Health Centre to get checked out and they didn't seem too worried - checked my blood pressure and it was okay, said to come back if I was concerned or it happened again, but that fainting on crowded, hot trains wasn't too uncommon. All has been fine since then, although I felt very tired for the rest of Tuesday (but I think that's partly because we did a lot of walking around shops and the strain of paying for things really took it out of me ;-)).

I had clinic yesterday and I drove myself, after making sure I had some yoghurt and honey beforehand to keep my blood sugar up. The consultant seemed pleased, checked my mouth and said I still have two quite big ulcers, right at the back of my tongue and my cheek, so gave me some lignocaine (I think) to apply. And he doesn't want to see me for four weeks, which is good because it means he thinks I'm recovering well. I collected the lignocaine and didn't think to look at it till I got home, only to find that my 14 day supply consists of four huge syringe contraptions, so I assume, in the absence of any instructions, that I have to squirt a limited amount vaguely in the direction of the mouth ulcers and hope some of it lands in the right place! I'm sure there's an art to it but I have yet to discover it!

Neil and I have booked a week's holiday in Spain, leaving next Saturday. I shall have to battle with our insurance company to stop them whacking a huge premium on our policy because I am now classed as a cancer patient (permanently, apparently - no five year amnesty) and they automatically put restrictions etc on your policy. Luckily MacMillan recommend a couple of companies so if our existing one doesn't act reasonably, I can try the others. The really irritating thing is that if our flight happened to be delayed or cancelled, it's nothing to do with my illness but if I haven't told them, it could make our policy invalid. I am assuming that my E111 card entitles me to any hospital treatment I might need when out there (hopefully absolutely none!) - anyway, I shall take my supply of painkillers and sleeping tablets and that should do me fine. The consultant agrees I can rest perfectly well in Spain (just keep out of the sun - but I do that anyway. I'm not really a sun worshipper), so we've got our flights and villa sorted and just need to book the hire car. Amy is a bit peeved because she has free house for a week but is working every day so can't really take advantage of it - awwww!

I've been lucky enough to have had several people willing to visit me - Steve, Tony and Phil all came on separate days for lunch and I have established that I can be sociable for about two hours before I flag, so all invitations now come with the proviso that after that length of time, I may well ask the visitor to leave! Dianne called in on her way home from work and Celia brought over a delicious chicken casserole this week, and some fabulous coronation chicken last week, so we are being well looked after! Lots of people checking how we're doing, including Sally, David, Agnes, David (minister), Doddy and a whole host of friends from RW. As a change from my normal daily routine, Neil took me on one of his business appointments at Drusilla's Wildlife Park where I spent ages watching and taking photos of  the meerkats - surely the cutest little things in the world - well, apart from the tiny baby tamarinds, maybe? We hadn't been there since our two children were much younger, so it was interesting to see how much it had grown and changed since then.

Next Thursday I have my first appointment with the consultant plastic surgeon, to get on his waiting list and for him to discuss what possible options he might explore for my facial palsy. There does seem to be a tiny bit of movement on the left side of my face, which is encouraging - when I raise my eyebrows, there is definitely a little bit of lift on the left eyebrow and when I smile, you can see the shadow of one of my dimples on the left side of my mouth, which wasn't visible before. Early days and small steps and definitely nothing to which I should be assigning huge importance, but it's a wee bit of progress and it's encouraging. Neil is coming with me so that we both know what might happen. It's so good to have a medical appointment that is about something other than oncology!

Adam seems to be enjoying student life still  and is coming home the day we arrive back from Spain to spend his reading week at home. We're looking forward to seeing him again and I know he has done at least two loads of laundry in the last three weeks, so hopefully he won't bring home too much dirty washing - maybe he isn't such a typical student after all!

I've spent a lot of time in the past few weeks thinking of a cycling friend of Neil's, Carl, who completed a charity bike ride in Spain and then had a massive heart attack and has been in coma for the past three weeks. He finally flew home yesterday and is now in St Thomas's Hospital in London. Thinking of what his wife and daughters have been going through has put my problems into a different perspective. If any of you believe in the power of prayer and positive thought, I would ask you to think of Carl and for the best outcome for him and his family.

I have a lot to be thankful for - my wonderful husband Neil, who is my rock and support and who is going to be spoiled rotten by me when I am well again, my amazing children, Amy and Adam, who keep things normal but also take care of me and my truly selfless and helpful friends, who do so much to support and care for us. I find it hard to think of the right words so "Thank You" will just have to do.

This time next week .......I will be sunning myself (or shading myself!) in 28 degrees - bring it on!!