Giving my face a new outing.....

This evening, Neil and I are off to my Institute's Regional Annual Dinner - one of our flagship events and one which I have attended for many years. I was invited as Chairman's guest this year and Neil has been invited to support me, as the organisers realised that arriving on my own and dealing with people who haven't seen me for a while might be quite daunting. It makes a huge difference having him with me as I feel protected from people staring and commenting (not worried about the people at our Dinner doing that, but more about travelling on the underground on a busy Friday evening!).  So I am using today to steel myself to show myself to people whom I haven't seen since last year, in many cases, and who won't know about what's happened. I am in a bit of a quandary about whether to try using some make-up or not - normally I would for a dressed-up event, but with uneven sized eyes, I am worried it might make me look more lopsided and accentuate the difference between them. And how can I disguise my wonky mouth? Should I even bother? At least I have chosen my dress and I am being a bit daring compared to normal, with a rather funky dress that shows off my newly slim (probably temporarily so!) figure. Maybe people will be looking at my legs and won't notice my face ;-)

Had a lovely phone call from Adam this morning, telling me about his course and how it's going - it all seems to be "good in the hood", as he would say. I do miss him, although I know he's having a great time and was very ready to leave home and be independent.

Neil went to Carl's funeral yesterday and was one of about 100 people who had to stand outside the crematorium chapel, as there were so many people there. He had a great send-off - his daughters were incredibly brave; one sang and the other read the eulogy. Overall, it was a fitting remembrance of a life well-lived and leaving behind many happy memories. Amy was also at a funeral yesterday, for a beautiful 14 year old girl she has worked with for a few years at Disability Challengers. So sad when such a very young life is lost and every parent's worst nightmare.

I am going to try and post more regularly on here - although the cancer treatment is finished (for now! - see, I am still not counting my chickens!), I still have the facial palsy to deal with and that, in some ways, is going to be much more difficult because it's up to me how I deal with it and any medical intervention won't be for a long time.

More over the weekend. Usual thanks to everyone and especially to Neil, Amy and Adam. My rocks.

...and yet another post!

.Is the world spinning on a different axis? Three posts in as many days - I should probably find something else to occupy my day....although today I have, in fact, been to my GP, collected my prescriptions, made a lamb hotpot (not hitpot as originally typed!) in the slow cooker, visited a friend to admire and play with her gorgeous new puppy, gone to a really interesting meeting about living as a white British non-Muslim woman in various Muslim countries, cleaned the kitchen and had a visit from a friend for a cup of tea - so pretty busy day, overall, by my recent standards!

I wanted to post to say that, when I saw my GP this morning and told him that I had been told I am in remission, he was absolutely delighted and when I said that I couldn't quite believe it until they had done some medical test to prove it, he said that the Marsden is the best cancer hospital in the world and they wouldn't tell me I am in remission if their experience of not just my case but of thousands of other cases didn't tell them so. That made me feel a bit better, although Neil and I have decided we will still ask for a referral for a PET CT scan, as originally suggested by my first consultant as the best way to check it's all been picked up. My GP (lovely man!) asked if he could have a look at my scar (ooh err missus) and then asked if he could photograph it for a textbook he's writing for students so that they could, for example, identify someone who ended up in A&E and was unable to state that they had had a parotidectomy. Well, if only I had known, I'd have straightened my hair :-) I had to sign a disclaimer form and he asked me about six times if I was sure, said I could change my mind etc. I was only too happy to do it, as anything that helps spread knowledge and understanding about what is pretty rare has got to be good, don't you think?

Maybe I should practise my autograph because I may be destined to become a media superstar.......yeah, right!

Overall, quite a good day so far, although I feel quite weary. I feel a bit more confident about the remission thing but still need to process it further - I see the psychologist next week and will talk to her about that and about how I am dealing with my face (or not).

Tomorrow is our friend Carl's funeral and I am thinking of his wife and daughters, parents and siblings and how difficult this time is for them - and how difficult it will continue to be. I always think that the period between a loved one dying and their funeral is like limbo for their family and friends - you can't quite believe the person has gone until you actually have the service and realise that the person really isn't going to walk through the front door again. I am praying for strength for them all for tomorrow and afterwards. I know they will give Carl a fantastic send-off, one which he would have wanted had he organised it himself.

Will I post tomorrow? You know what? Maybe I just will! I feel on a bit of a roll at the moment....

Take care, everyone and thank you, as always, for your comments on my wee blog :-D

Blimey, an update two days running!

This blog is like a bus - nothing for ages and then two posts come along at once! This one is especially for Mummy Pink :-D

Today's update is that the Marsden called to say that, having discussed me with the top consultant for Head and Neck Cancer, there is no point in doing a scan as anything I did have would be too microscopic to be picked up and anyway, they are certain I am in remission and that the surgery got rid of everything with the radiotherapy as the insurance policy to pick up any stray cells (hell of an insurance policy!!). Again, I feel as if I should feel some positive emotion but can't seem to find that reaction. I am still thinking that it will be worth talking to the consultant about being referred for a PET CT scan, which would pick up anything microscopic and would give us peace of mind. I will need to think about why I feel like this - just as well I am seeing the psychologist next week so I can talk through this with her!

In other news, my Yorkshire Parkin turned out lovely and I am looking forward to trying Nigella's chocolate fudge cake recipe, even though I am not fond of chocolate cake myself! Thank you for the book recommendation too - I need to go hunting on Amazon- wonder if there's a Kindle edition :-)

Thank you for your support and comments - as always, they help us deal with what's going on as we try to process this latest news and what it means for our reactions and plans. And special thanks for my lovely husband and children for their unfailing support and love.

Good news, bad news?

The first thing I have to tell you is that, sadly but not entirely unexpectedly, our friend Carl passed away last week. His family dealt so bravely and lovingly for over six weeks with everything that happened - the heart attack, coma, travelling to Spain and bringing Carl home and keeping everyone informed about what was happening - and they are grateful that Carl is at peace now, as he had no chance of any meaningful recovery. A hard time for them but hopefully they are getting some comfort from the obvious love and affection which so many people have for their beloved husband/father. Neil will go to the funeral on Thursday but I am not yet well enough to go.

In other news, once more I have to try and remember what has happened, as I have been so lax about updating!  I felt much better last week than I had the previous week, when I was nauseous, not eating and feeling mildly spaced out. All very odd and we can only think that the long day travelling back late evening from Spain, cold air-conditioned plane and returning to considerably cooler temperatures just affected me badly. I have felt so much better and, although I am still not eating very much, I am doing my best! I have now lost over 13 kg since radiotherapy started and even I can see that I am on the skinny side of slim, so I recognise that I need to make more effort. In the past few days I have had a real hankering for fish pie, so I made a huge one on Saturday that we have been working through - almost finished (thank goodness, say my family!). I also had a baking afternoon last week and made fruit scones and wickedly chocolatey brownie (which I don't even like!) - I think Amy and Neil enjoyed coming home and having home-made goodies to eat! Today I am going to try Yorkshire Parkin - I remember enjoying it when I was young.

One reason for baking is that I have it in mind to try and make some Christmas gifts this year, while I have time to do it! I fancy making fudge, truffles etc and also some lavender sachets, with lavender from our garden. This might be the only year I have the time to do it, so I thought I should make the most of having free time. I am hoping for a trip to a craft shop soon to get the bits and pieces I will need to make sachets, etc.

I had an appointment with my consultant on Friday at the Marsden. I hadn't been for four weeks and had a session first with the pain management team, as I am taking part in a study they are carrying out. Between that interview, the clinic running an hour late and then having to wait for another prescription (apparently I now have oral thrush - a sign of malnutrition, so I really do need to eat more!), I was at hospital for about four hours in all! The consultant seemed pleased with how I am doing. She had a good feel around my neck, head, jaw and behind my ears on both sides and says everything is as it should be. I will have a scan to provide a baseline picture before my next appointment (in 5 weeks' time) but she seems to be pretty confident that the treatment has got rid of everything, between the surgery and radiotherapy. I won't be convinced of that unless and until I see it in writing, but I doubt that will happen. In the meantime, I just have to assume that she is right and that I am now in remission. I called Neil from the hospital to tell him and I felt that my reaction should have been one of elation but instead I felt it was a bit of an anti-climax - weird and ungrateful sounding, but I think it is difficult for me to think that there might be positive news when I still feel as if I am in the middle of it all and dealing with some unpleasant side-effects. In running terms, I feel I am only part-way through a marathon, with the finish line some way off!! Maybe this is how cancer patients feel - reluctant to accept that things are good, anticipating bad news - I don't know. God knows I want to be better and to know that this wicked intruder has gone, but for some reason I can't seem to think it could be the case.

I talked to my mum on the phone yesterday and, while she was relatively lucid, I don't think she remembered what is wrong with me although she knows I haven't been well. She will remain in hospital for a few more weeks while a care home is sorted out for her, since she can't live alone any more. It was odd to have a conversation with her where I didn't know whether she would remember my name, my husband's and children's names, or anything about us. Dementia is such a horrible disease. It robs people of so much.

There seems to be an awful lot going on at the moment and I feel very tired much of the time, although I am resting a lot. I'm just tired of feeling tired.

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.

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".

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!!