Saturday, 31 December 2011

Reflections and Anticipations....

I'm not sure how it will feel writing this post - easy, hard, painful, enjoyable? I think I just have to get on and write it and leave the soul-searching until afterwards, otherwise it will never get done.

It's December 31st. The end of one year and almost the beginning of another. Traditionally, it's a time to look back at the year just gone and look forward to a new year, fresh start, whatever. Usually  we would spend NYE with friends, perhaps having dinner, popping open some fizzy, laughing and generally having some fun - not too much time spent usually analysing what's happened, but rather just enjoying the continuation of the celebrations which began a week ago.

This year, however, I shall be going to bed early, well before midnight. I have absolutely no desire to see the old year off with any kind of celebration. I want to draw a line under 2011 and just waken up in a new year which - I fervently hope and pray - will be a better year for my family and me. I might sound curmudgeonly, but given what kind of year I have had, I just don't feel like pinning a smile to my face (well, as much of a smile as I can manage!) and pretending that everything has been fine when it patently hasn't. Equally, I don't want to sit in a maudlin heap, tears dripping into my glass as I bemoan what a rubbish time I have had and get all "why me?" about it all. So, on reflection, I think it's best that I just take myself off to bed early, after a quiet evening with my lovely husband.

I have been reflecting, as  you might expect, on all that's happened in the last year - and of course there has been a lot of good stuff. This time last year we were in New Zealand and already celebrating the new year before spending the most amazing four weeks in the most beautiful country. It all feels a bit dream-like, to be honest, but I think that's a function of what happened later. I do think it's important that I remember the good bits of 2011, to get some perspective. Our holiday was fabulous, meeting up with Amy after she'd been away for 5 months was wonderful, her coming home unexpectedly early was incredibly welcome and of course, Adam succeeeded in getting a place to study to become a primary teacher; his ambition for so many years. And, slightly less measurable I suppose, I have learned a lot of good things this year. I have learned that it is possible to get what seems like the worst news and that you can carry on breathing, putting one foot in front of the other, doing normal things. It might all seem like an effort, or as if it's all happening to someone else, but you can do it - and I did. I learned that I have many good and kind friends who supported me and my family in so many ways. Quietly, subtly, not expecting any gratitude or reward - these friends helped. Sometimes in practical ways - providing food, doing the ironing, checking if we needed shopping done, offering to do housework, driving me to hospital for the six weeks of radiotherapy treatment - and sometimes in more emotional ways: a text that arrived at a low point, reminding me that I am in someone's thoughts, being held in people's prayers, sometimes just a gentle hug, whether literal or metaphorical. I learned that some people I expected would be involved and supportive seemed to remove themselves from our lives - maybe their own lives were difficult and busy or maybe they just can't cope with illness. It happens and I can understand it. I also learned that some people who I thought would be more remote actually ended up being a huge source of support and encouragement. Most people behaved to type, I think, but it has been an interesting lesson in how people can behave in unexpected ways.

I learned that my immediate family  - Neil, Amy and Adam - have the most amazing strength and resilience and that together, the four of us can deal with whatever life throws in our direction. We have coped with my diagnosis and subsequent treatment, with all its attendant and horrible side-effects. We have kept our sense of humour, but recognised the need for tears and anger (although it took me a very long time to acknowledge that I could show these feelings). I never doubted the love we had for each other, but our experiences this year have brought that love much more out into the open and displayed it proudly for the world to see. We all learned that my being ill shouldn't be the only thing happening in our family life - there are four of us in this family, four lives, each with their own happinesses and sadnesses, opportunities and challenges, and we needed to make sure that my problems didn't overshadow all the other important things going on.

Perhaps the biggest lesson I have learned is that it is possible to see a future, even when your whole world falls apart and crumbles around your ears. When all the certainties you once assumed have been taken away, you have to take the broken pieces that are left and reassemble the jigsaw to reflect a different picture. That picture may not be the one you have been working towards for as many years as you can remember, but it doesn't make the picture any less pretty, or valid, or worth trying to create. Maybe my jigsaw is smaller than it was. Maybe the picture won't last as long. Maybe, maybe - I don't know really what my picture is. But I do know that it's a picture I want to see. I want my life to last as long as possible and that means doing my best to remain fit and healthy and give myself the best chance of getting well again. We haven't discussed my prognosis with the consultant but I suspect that, given the sheer speed and aggression of the cancer and that it had already spread to several lymph nodes, I am not necessarily going to be a huge drain on the pension funds.....although I am a young (in the NHS's eyes) patient and haven't damaged my body through smoking and heavy drinking, so that surely counts in my favour, I hope?  In a way, if we don't discuss my prognosis, it means we don't have to confront it and work out how we are going to deal with it. It's the big cancer elephant in the room, isn't it? And of course, we can't pretend that we don't notice this big grey mammal for ever, so at some point we will have to have this conversation and deal with it. But we will deal with it. I know we are strong enough to face things and to keep breathing, putting one foot in front of the other, doing normal things.

I truly don't want this post to be negative. I feel incredibly lucky in so many ways: lucky that I spotted my lumps early, lucky that I was taken seriously by the medics, lucky that I live in the 21st century in the UK, with the fantastic resources of the NHS, lucky in my friends and most of all my wonderful family. Yes, it was bad luck that I ended up with a rare form of a rare cancer and that it was so aggressive. But we have coped and I feel very humbled by the support I have had. I know that my family and I will find the strength to deal with whatever we face. However, we all  hope that 2012 won't test us in the same way as 2011 has. Sometimes you just don't want your strength and fortitude to be put to the challenge any more. Sometimes you just want a bit of a quiet, predictable life, with no surprises and not too much to test your mettle. I may get that in 2012, I may not......I do know some things that will happen in 2012, though. I know that I will have regular check-ups to make sure I am okay. I know that I will once more be relying on the wonderful people in so many parts of the NHS who will look after me. I know that Neil, Amy and Adam will support me and surround me with their love and care. I know that our friends will help and support us and hold us in their thoughts and prayers. I know that, in April, I have got to get around 26.2 miles of the London Marathon, whether I end up walking every step rather than running! I know that, at some point, I want to return to work and feel I am making a contribution to an organisation's success.

I know that I will make the most of the year.

Thank you all so very much for all you have done for us and for walking every step of the way with us. My journey (sorry to go all X factor on you!) is by no means over and I will continue to need your company, so stay on this path with me, please. I need you all.


Monday, 19 December 2011

Frohliche Weinachtsfest!

Can you tell I've been to Vienna since I last posted on here? :-)

Neil and I had a fabulous time in Austria. Early start on the Saturday meant we were able to drop our bags off at our hotel before midday and set off to have a look around a few of the 20 Christmas markets that take place in Vienna during December. We have been to Salzburg and Innsbruck before, so we knew what to expect, but there's something so magical about the twinkling lights, the aroma of mulled wine and hot punch wafting past your nostrils, the chatter of the crowds and the cold freshness of the air that captivates me anew every time I visit Austria at this time of year. We wandered around a few markets, tried some sausage and sauerkraut (sausage was fine, but sauerkraut is not for me, even when my taste buds aren't fried to blazes! ) and some mulled wine - and on that point, I am pleased to report that my taste buds are happy with mulled wine or hot punch in small doses, but the more alcoholic the content, the less I can tolerate it. It was fun trying some different ones to find out, however, and Neil manfully finished anything I couldn't drink.....

By mid-afternoon, our early start was catching up with us, so we went back to the hotel for a rest. Our hotel was really centrally-based, next to the Rathaus (Town Hall) and the Parliament building, close to a couple of underground stations and tram stops. It was a modern "statement" type hotel and before we went, we looked at some photos on their website to get a feel for what the rooms would be like. We were a teeny bit concerned that the en-suite walls appeared to be made of glass but assumed that there would be some frosting somewhere to preserve one's modesty (or at least, try to keep romance alive!). But no. The walls were clear glass! Thankfully, though, there was a blind on the wall that looked out onto the main part of the room and we lowered that - although we didn't discover until our last morning that there was a way to block the view totally by twisting a knob on the wall (I hadn't spotted that, so there wasn't total blackout!). By the time we got into our room, we were both so tired that we just took our coats and shoes off and flopped down on the bed.

Two hours later, I woke up, feeling mighty refreshed and ready to get showered and go out for another look around the markets and then for dinner. As part of his research into our trip, Neil had found details of a local restaurant serving typical Austrian food (Wiener Schnitzel), so we wandered through some markets and made our way to the restaurant at about nine o'clock. In we went, were given a table and some menus and made our choice....then we noticed that no one in the restaurant was actually speaking German (lots of Italians and a couple of other Brits), the walls were yellow with nicotine stains - smoking in public places is still permitted, which felt very alien to us - and the two owner/waiters were doing their best to yellowify the walls even more by puffing away at every opportunity! Our food arrived and it is no exaggeration to say that it was a mountain of meat of indeterminate origin, most of it flattened and cooked in breadcrumby stuff, some of it just sitting on the plate in a lump-of-meat fashion and, beneath the meatfest, a pile of chips! The concession to healthy food was a wee bowl of salad, which consisted of insipid lettue, grated carrot and (oh yes!) sauerkraut....all swimming in vinegary dressing. Put it this way, the whole meal experience doesn't rank in our top 10 of gastronomic experiences! We gave up pretty soon and waddled out of the restaurant feeling very.....meat-bound, I suppose. Luckily, we had about a 15 minute walk back to our hotel, which made us feel a bit better, getting some fresh air and exercise.

The next morning, we were still feeling so full from the meat bonanza of the previous night that we couldn't really do justice to the fabulous breakfast at the hotel: great choice of fresh fruits, cereals and  yoghurts, cold meats, fish and cheeses, hot food, pastries, bread, jam etc..... we nibbled on a few things before admitting defeat and heading out for the day.

Over our three and a half/four days in Vienna, we managed to pack in quite a lot, apart from the numerous Christmas markets! On our first full day, we went to the Belvedere art gallery, where there is lots of original Klimt, including his very famous "The Kiss" and various other artist, including Monet and Manet. We spent a few hours happily absorbing some culture and then went back to one of our Christmas markets for something to eat (we had felt full up all day from the meat mountain of the previous night!). Back to the hotel for an early-ish night and up bright and early (okay, not really!) to experience more Vienna, this time making our way to Schonbrunn Castle and Zoo. We had thought that we would spend a couple of hours at the zoo and then spend the rest of the day at the castle, but no, we spent pretty much the whole day wandering around the zoo! And what held our interest for the longest? Was it the giant pandas? The tigers? The lions? The meerkats???? No, we spent at least an hour feeding the squirrels! There were beautiful red and black squirrels scampering around the paths at the top of the zoo and they were so used to people being around them that they would come right up close. In fact, I had red squirrels eating from my hand, with both their little front paws up on my palm and their little whiskers tickling my cute! It was just the loveliest experience - but ironic that we were close to all these magnificent, endangered, beautiful animals and I spend most of my time and get the hugest amount of satisfaction from the little squirrels roaming free. Of course, red squirrels are so rare in Britain now that if I did see one as a child, I don't remember it and I certainly haven't seen one as an adult, so I suppose that it is an endangered species as far as Britain is concerned.

We ran out of time to see the Castle so decided to do that the following day. Of course, as part of our wandering around the Castle and the other parts which were open to the public, we managed to go near where we had seen the squirrels the previous day and were lucky enough to have another close encounter with a little red one - not for very long, though.  The Castle was, well, a castle, really. Sumptuous rooms, a real sense of history, an insight into how posh people lived  and a way to connect people and events.

Sadly, it was then time to go back to pick up our bags and head out to the airport for our flight home. We had left Neil's car at the airport car park and were home by about 11.30 pm, tired but feeling we had really made the most of our time in a beautiful city.

I had surprised both Neil and myself with how much walking I was able to do without the need for a rest - one of the reasons why Neil had booked us into a city centre hotel was so that we could easily go back for a rest if I need one during the day, but in fact I was fine and kept going. Okay, we weren't route-marching, but we didn't dawdle. Once we were home, I was sensible and had a quiet day on Wednesday, although in the evening we went up to London to meet up with some friends for a meal at the Oxford and Cambridge Club , no less! On the Thursday evening, we went to the Christmas show at the Orpheus Centre, where Amy works as a fundraiser. They performed a version of A Christmas Carol, written, composed, designed by the students themselves. The students all have either a physical or learning difficulty and everyone takes part, regardless of whether they can walk or talk. Two students had keyboards which they used to produce synthetic voices. Several were wheelchair users and quite a few had no speech at all. It was an incredibly inclusive show - no singling out of the student who played Scrooge over and above students who had "wheel on", non-speaking parts. It was my first experience directly of the Orpheus Centre and I found it absolutely inspirational. If anyone wants to find out more about the amazing work they do at the Centre, check out

Over the last few days, we have had <drum roll> The Return of Adam from Uni....da da daaaaah! He arrived home on Saturday afternoon and clearly hasn't fully embraced student ways, as he didn't bring home any dirty washing and claims he has left his bedroom tidy enough for us to see when we take him back in January - although today he admitted that his friend Hannah had tidied it for him! He's no fool, our son.... Since his return, we are going through three times as much milk and cheese, even though he has been out Saturday and Sunday evenings and has spent every morning in bed until late morning. Luckily his little Corsa is still taxed, insured and has a current MOT so he is able to catch up with his friends that he hasn't seen for months. We waited until Adam came home to get the house ready for Christmas - Neil has got the tree and tomorrow he has the day off work, so he and Adam can get the boxes of decorations down from the loft and we can get the house looking festive. I am finally starting to think that it's beginning to look a lot like Christmas and found myself humming the song today.....sorry, everyone within hearing distance. My voice is not what it was before I had r/t!

I said to Neil tonight that I feel tired, but happy. My joie de vivre has returned - perhaps not in the same quantity as before ( I hope I can say "yet" with some certainty) but it's definitely there. I am much more interested in things than before and can see further ahead when it comes to planning things. I can see a future now, whereas a few months ago I couldn't see past the end of this year. I now have my date for the PET CT scan, which will, we hope, give us the reassurance we need. I feel I can try to set my worries to one side for much of the time, although every now and then I get a niggling sense of anxiety. That's entirely normal and I feel that I have more armoury to cope with the times when I feel like that. In the meantime, I am looking forward to family time at Christmas and being able to celebrate with a glass of fizzy on Christmas Day - something which was in doubt until fairly recently! It's all about celebrating the small successes :-)

If I don't post before Christmas, I wish you all a blessed and peaceful Christmas and remember the true meaning of Christmas: to make sure the champagne fairy visits me!

Friday, 9 December 2011

Quick update...

...following our visit to the consultant today. We saw the consultant who is in charge of the whole Head and Neck Cancer clinic, Dr Newbold - we hadn't seen her for a few months, so it was good to catch up with her. We had gone along expecting to have to push for me to be allowed a PET CT scan, which my first consultant at East Grinstead Hospital had said would be the best way to check that all the cancerous cells had been caught, because it's so microscopic that an ordinary scan wouldn't pick it up, but he had also said that it would be hard to get one (on cost grounds) and that he had had to put up quite a fight to be allowed to refer a 19 year old! So we had been (metaphorically) girding our loins and rehearsing justifications as to why I should be allowed one. No need - Dr Newbold said it wasn't common practice, listened to what we said, looked at my notes, saw I had had one before my surgery and said it made sense to have another as a comparison to the earlier benchmark, as it were - result! We were so delighted, not just because we truly believe that this is what we need to give us reassurance that I am in remission - while accepting that firstly, it may give a false result in either direction and second, that we would have to deal with it if it does indeed show that I still have cancer - but also because it was so good not to have to fight for it. Such a relief.

The consultant did a physical examination, looked inside my mouth, at my gums, teeth and tongue and is very pleased with me. She says I have recovered really well, given the time since finishing radiotherapy, so that was pleasing. The PET CT scan won't take place till February/March, because there will still be inflammation in the treatment area, even now, several months after finishing r/t, so we need to be sure that has all gone.

Neil and I were both really pleased with today's appointment and were grinning as we walked back to the car. I see the consultant again in January, as she wants to keep an eye on me until I have this scan. In the meantime, Neil and I are off to Vienna tomorrow for a few days to enjoy the Christmas markets - very early start, so I shall finish this post now and get off to bed, having checked for the umpteenth time that the passports, flight documents, hotel confirmation etc are all there!

See you next week!!

Tuesday, 6 December 2011

The benefits of exercise.

Greetings, one and all!

My last post talked about how positive and how much better I felt after returning to exercise and that it meant that - at least for the moment - I don't have to take anti-depressants. My exercise regime has continued, with gym visits yesterday and today, and <drum roll> I returned today to my Zumba class, which I used to love but haven't been to for over 6 months. I was unexpectedly shaky at the start of the class, because I had to tell the instructor that I had compromised shoulder mobility so that she could keep an eye on me in case anything went badly wrong and also because a few people remembered me and were asking where I had been etc. But once the music started and we warmed up, I was fine. It was as much fun as I remembered and I surprised myself by how much I recalled - I could tell I hadn't done much running, though, as my calves really felt it when we did the jumping up and down parts! I walked most of the way home afterwards with one of the women from the class and we had a nice chat, so it set me up nicely for my appointment with my psychologist in the afternoon.

The last time I had a counselling session, I got pretty distressed. I really wanted to be able to demonstrate today that I have moved into a more positive phase, largely because of being able to exercise again. The first thing she asked me to do was complete a short questionnaire to see where I am in relation to my state of mind at the previous session and, after I filled it in, she said that my scores were well within normal range and asked if something had happened to make me so different. I talked to her about how being active was making me feel as if I can cope with everything better, partly because of producing happy hormones but also because being fit and healthy means that I am better able to cope with any possible further treatment I might need. I think that getting upset at the previous session also helped me realise that I am allowed to show my feelings and be angry, upset or frightened about what's been happening to me. It also means that if I show my feelings, I am tacitly giving Neil and the children "permission" to show theirs too and that we don't need to worry about upsetting each other. This is a difficult time for us all and it would be unrealistic if we didn't have feelings of uncertainty or fear, so it's far healthier for those feelings to come out. Otherwise, there's a risk that cancer becomes the elephant in the room that we don't want to talk about. This blog has always given me a chance to set out my feelings, which has been mightily cathartic, but sometimes you have to have face to face conversation about things.

After a long discussion about it all, the psychologist said (and I agreed) that at this stage, there's nothing that talk therapy can add to how I feel, since I now have my coping strategy sorted and have moved into a different phase. So, with the proviso that I reserve the right to contact her if I feel I would benefit from another discussion, I am "signed off". I'm really pleased at how far I've come in the three weeks since I last saw her. I have read articles about how exercise can help overcome depression and anxiety - well, I've certainly had it proved to me! Of course, I am not naive enough to think that I will never have any bad days. Everyone has them, whether they are dealing with illness or not, so I am bound to have low times. But that's normal, and I know that I will be able to get through it. I need to remember how good exercise makes me feel and realise that I can get back to that state.

Another thing that has helped me is going to a Head and Neck Cancer Support Group meeting at the weekend. Neil and I went to our first meeting, at Maidstone Hospital. I knew one other patient from the Facial Palsy Support Group and there were two HCPs from Queen Victoria Hospital whom we knew, so at least we recognised a few faces! It was a very sociable meeting - it's a well-established group and this was the Christmas Social, so we had cakes, some singing and a Christmas quiz. Those of you who know us well will know that Neil and I are very competitive about quizzes and yes, we did win! However, we did give answers to other teams who were struggling, so we weren't really tooooo competitive :-). There were quite a few people there who have far worse facial disfigurement than mine, so it gave me a different perspective on how I look. And there were people there who are 8 years or more from their original diagnosis, which is so encouraging, seeing them looking so healthy and being so involved in life. A very useful morning for  us.

We did a bit of socialising at the weekend too. My friend Lin came over for lunch on Saturday with her adorable toddler son. He is seriously cute but it made Neil and me realise just how long it has been since our children were that age! We'd forgotten that toddlers love repetitive games - seeing Lewis's whole body shake with giggles when we played a game with the fridge magnets was just lovely. We were both exhausted afterwards, though - you really do forget how full-on young children are! We had been invited to a party on Saturday evening - quite local, so not too far to drive. I was feeling a bit meh! about going, partly because I was wilting a bit but also because I was getting a little bit anxious about going into a room full of people. Looking back, I can see it was precisely because I was a bit tired that I felt anxious. We decided to go just for half an hour, but once we got there, the hosts were so pleased to see us and we ended up chatting to old friends and to some people we'd never met before and had such a nice time that we ended up staying for about two hours. It was the right decision to go and I'm glad Neil persuaded me - not only did we have a good time, but if I hadn't gone, I would possibly have started to feel more anxious about the next social event I was invited to. As it is, I went to Zumba today not thinking at all about how I looked and whether people would wonder what had happened to my face, although, as I said earlier, I did have a teeny wee wobble at the start. I recovered well and I know now that I can deal with these situations. In fact, some of the time I forget that my face is a bit different from how it was - that's progress!

I've been joining in a really interesting discussion on Mumsnet website, about the language we use around cancer patients - "fighting", "winning or losing the battle with cancer". Why do we only use that terminology for cancer? We don't say "he's fighting a broken leg", do we? Interestingly, the unanimous view on the discussion is that it can be really unhelpful if cancer patients are expected to stay positive all the time and not let it beat them - sometimes it's hard to stay positive (as I know) and sometimes you have to let it all out and show your anger and fear. But if everyone is exhorting you to stay positive and be a fighter, you can feel as if you are letting people down by not being like that. And what does it imply if someone doesn't beat their cancer? - that they didn't fight enough? They weren't enough of a warrior? I absolutely agree (and I know I have said it on here before) with Danny Baker, who also rejected the fighting analogy and said that his body was the battleground and the battle was between the cancer and the medics. I find it so interesting that there's so much more emotive language around cancer than any other illness that I can think of - is it because if we see cancer patients staying positive and upbeat, we can somehow reduce cancer to less of a frightening monster under the bed?

That was all pretty serious - and I make no apologies for it. I have used that kind of terminology in the past and genuinely didn't think I could possibly be making it harder for the cancer patient, but now I am in the position and I am that patient, I see it differently. That doesn't mean my view is the correct one, but it's how I feel and therefore it's correct for me!

Day off the gym tomorrow, I think. We went "en famille" this morning; Neil, Amy and I together, which was rather lovely. Having been to the gym for the past two mornings and having done a Zumba class, I think I might quite enjoy staying in bed tomorrow morning for a bit longer. Lazy? Moi? Never ;-p

Thanks, as always, for comments and support, both on here and via email or Facebook. And, of course, biggest thanks and love for Neil, Amy and Adam x

Friday, 2 December 2011

Hurrah for happy hormones!

It's true, exercise really is good for you! Since going back to the gym last week, I have felt more positive and energised than at any time over the past six months. I am taking it slowly and trying not to push myself too far, but at the same time I want to increase my levels of fitness and build up stamina (got a marathon to run next year, you know!). I'm doing a mix of cv work and resistance work, with some shoulder physio and abs work as well. I tried running for the first time yesterday and did a minute walk, a minute run for 10 minutes, then ran for about two and a half minutes. It felt good - but hard! I knew I had lost a lot of my base fitness and stamina and the way I felt when I ran proved it!

When I saw the psychologist a couple of weeks ago, I said exercise was one of the things I miss - and it's not just about the endorphins it produces but also about the fact that running and exercise are so bound up for me with my perception of myself that all the time I was unable to exercise the way I want to, I felt farther away from how I wanted to be. And from how I used to be. I really hoped that starting to exercise again would be a positive thing for me psychologically as well as physically, and happily that seems to be the case - at least, so far!

I saw my GP yesterday to talk to him about whether I should take anti-depressants (my psychologist had suggested I have the conversation with him) and as soon as I said that I had started exercising and that it made a difference, he said about endorphins and research showing that exercise is as effective in dealing with mild depression as a/ds. We had quite a long talk about it and we agreed that, at the moment, my exercise regime is helping me cope better with what's happened, so I don't need to take any medication at the moment. The proviso is, obviously, that if I get to the point where I do feel unable to cope, I go back to see him and we discuss medication. I don't mind taking medication to help me through things, but I must confess to feeling a sense of relief that I don't have to worry about possible side-effects or having to change medication if the initial one doesn't suit me. So, as long as exercise makes me feel positive about myself and that I can deal with what's happening, then that will be great.

I am so pleased - and relieved - with the change I feel in myself over the last 10 days or so. I've been lacking confidence in so many areas, including driving, to the extent that I have avoided driving except when absolutely necessary (usually to get to hospital appointments and even then, only in the last couple of months). Yesterday, I had to drive to the Marsden to see the dental hygienist and I felt like my old driving self, as it were - didn't get anxious, didn't think I was bound to have a mishap or lose my way (silly, really, as I could probably direct someone to the Marsden if I were blindfolded and sitting in the back of their car!). In fact, I felt so fine about it that when I left the Marsden, instead of going home, I drove into Croydon and did a couple of hours of shopping. Now, that really is a breakthrough, as it meant that I voluntarily put myself in crowds of people and accepted that I might be on the receiving end of looks or comments. I did it. I didn't avoid it, I actively sought out the challenge. And it was fine. I actually found the supermarket shop this morning more of a challenge, but that was probably because everyone seemed to be really dopey, blocking aisles with their trollies, stepping out without looking and then glaring at me as if I were in the wrong. I think early Christmas panic-buying had set in!

At the Marsden yesterday, I was seeing the dental hygienist. Long-term readers of my blog will remember that one of the side-effects from my radiotherapy is weakened enamel and higher risk of tooth decay, with attendant difficulties if any tooth couldn't be saved and had to be extracted. I have been diligent with my teeth-cleaning and flossing, even though there have been times when my mouth was too painful to open properly and the absolute rock-bottom time, when cleaning my teeth made me vomit (I do hope you're not eating your lunch or dinner when you read this!), so I have failed to clean them properly a few times. However, the hygienist said they are looking really good and I am looking after them very well, so she signed me off and I only need to see the hygienist at my dental surgery from now on (this means, of course, that I shall now have to pay for it, whereas at the Marsden it's free!).

All in all, yesterday was a good day. Wednesday was good too, as two former colleagues (and current friends!) came over and took me out to lunch. They had driven over in Jim's Aston Martin DB9 and we went for a spin - wonderful! I even asked them to take photos of me sitting in the driver's seat, which shows how much better I must be feeling, because normally I avoid cameras like the plague. Of course, it could be that I am just shallow and my misgivings about being photographed were easily overridden by the desire to be seen sitting in a posh car and pretend it's mine! It was good to catch up with Jim and Alan and we had a good laugh.

Today? Well, today I have been to the gym first thing, with Neil. I didn't enjoy running as much as yesterday, so I did less of it and did some time on the step machine instead. The old Ali would have been cross about not doing the running, but this Ali just says - well, I did other exercise instead and it is very early days. It will come. Then the food shopping (grim) and I have blitzed the cooker and oven, tidied out, cleaned and reorganised some kitchen cupboards and am now having a bit of a sit-down. The sun is shining, the washing machine is whirring, the cats are sleeping and I had a lovely chat with Adam, who phoned me from Carlisle. It's the Christmas Fair at the school where he is doing his teaching practice, so it's all very exciting for the children (and Adam!). Amy has her work Christmas night out tonight, so it will be a quiet night in for Neil and me, and all the more precious for being so.

Long may this positive feeling continue! I am off all my painkillers now, so my only medication is half a sleeping tablet at bedtime and I said to the GP yesterday that when this prescription runs out, I don't want to renew it. I feel it's time I tried to establish a sleep pattern that's not based on chemicals.
I know I will have down days, but I genuinely feel as if I have turned a corner and am returning to a normal that I feel more comfortable with. And when I have a down day, I shall remember how good I feel now and remind myself that I can feel like this again.

I see my psychologist next week and I would like to be able to go in and show this positive, energised Ali to her, but much depends on how I feel on the day and I accept that, although I will make sure I have been to the gym that day before I go to hospital!

Thank you for your support and friendship - I am keeping this blog going, because it helps me to set things down, whether things are going well, or not so well, so please keep reading! Biggest thanks and love, as always, to Neil, Amy and Adam.

Tuesday, 29 November 2011

Moving those electrodes downwards....

Today I had an appointment with my speech therapist. The day got off to a slightly rushed start when I woke up and realised it was half past eight and I had to leave for hospital just after nine! I hadn't set the alarm because neither Neil nor I was going to the gym, and I was so soundly asleep that Neil let me slumber on when he got up for work - I should have reminded him last night about my appointment and asked him to waken me up, or just set the alarm myself!

Anyway, I got there in time, washed, dressed, face taped up etc. The session with Vanessa (speech therapist) was very positive and constructive. She says my eyebrow is now in the correct position, after starting off with it sitting very low on my eyelid - this is due to some natural nerve regeneration but mostly due to using the electrodes every day for the last 6 months - or, if I am totally honest, almost every day. There have been a few occasions when I have forgotten and a few when I have thought " What's the point of doing this?" but generally I have been pretty good. In recent weeks, I have also used it near my eye, to stimulate the nerves there. Vanessa told me I don't need to use it there as that has recovered well and my eye now closes very well - this is particularly good news, as it means that it gives me a slight chance that the consultant will decide to re-open my eye at some point. I know it's only a chance, but at least I don't have to write it off quite yet. Instead, I have to use the electrodes next to my mouth and nose, to try and generate some movement there - when I smile, there's a slight lift out at the side of my mouth but it doesn't lift up by my nose, like your faces do on both sides when you smile - it makes my smile very lop-sided. Using the electrodes may make a slight difference, but clearly won't bring back my old grin. I also have a very precise facial exercise to do each day which needs to be done exactly as I was practising it during my session, otherwise I will have a lot of work to undo the damage I might cause to how my facial muscles work - eek!

We also talked about the Facial Palsy charity which has just been set up - a national charity to support people who, for whatever reason, have facial assymetry. I think I mentioned going to a meeting of this group in my blog at the time. Anyway, the long and short of it is that I am getting more involved with this and helping with the charity's blog and newsletter. It's a group that should be run by the members, not the NHS professionals who are helping establish this group on top of their own workload. I am quite excited about it, because it could have a big impact on people like me - in a positive way.

I left hospital feeling that it had gone well. I am going back to the gym tomorrow and really do feel that the return to exercise is helping me deal with things a lot better. I also talked with Vanessa about how I could protect my face when I return to running - the impact of landing on the ground risks lengthening the muscles in my face, which would make future surgery less effective. She has advised me to tape my cheek up and that should give me the protection I need - I feel really pleased that I might be able to run again (depending on stamina and how my legs perform!!).

I returned home with not very much time to produce lunch for today's guests - my minister, David, and the local RC priest, who used to live opposite us. Dinner was in the oven when they rang the doorbell, even if I hadn't managed to tidy up all the debris from the preparation! They didn't seem to mind, though.....

So, a good day (so far!). When I look in the mirror and look at my smile, I need to remember the difference between how I looked in June, when I first saw the speech therapist, and how I look now. To most people, I don't really have a proper smile - or at least, it doesn't look like how other people smile - but today, looking at the photos of me in June and the photos of me now, I can really see the difference. Marginal? Well, yes, but in this game, the key is marginal, slow improvements achieved through exercise and stimulation and then surgery will bring about (hopefully) bigger improvements and restore a bit more animation. That won't be for another 18 months at least, though, so a long old wait.

I really want this positive feeling I have had over the past week or so to continue. I need to remember how I feel now when I next feel a bit down about it all. If only we could bottle feelings and then unpop the cork when we need to feel that way - wouldn't that be great?

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 :-)

Friday, 25 November 2011

Such a social animal!!

End of the week approaching and it's been a busy old week for me, with lots of lovely socialising - lunching with neighbours and friends, out at the theatre on Wednesday evening, Christmas shopping evening in a small local village last night to hear some singing by students from the Orpheus Centre, where Amy works - and two gorgeous running friends coming round for lunch today. Ceilidh at my church tomorrow evening so the weekend will be pretty full-on too!

Luckily, I seem to have coped with this level of activity okay and, although I feel a bit tired, my spirits are high and I am enjoying my week. Charley Boorman was excellent entertainment and we had a brief chat with him afterwards - Amy and her friend Caroline, who both did the Mongol Rally last year, talked to him about their adventure and showed him photos of the car they used to get to Mongolia and he was really interested in their trip and spoke to them for quite a long time. During his performance (is that the right word? It felt a bit like sitting in a large room listening to a friend chat - nicely informal), he mentioned that he had been diagnosed and treated for testicular cancer, and I thanked him for being so open about it and we chatted about being members of the Big C Club. Such a lovely man! It is sobering to find out just how many people have become members of this club over the years. Just goes to show that cancer has no respect for age, talent, wealth or anything, really - it just chooses someone to invade and gets on with its nasty business.

I went to the gym again this morning and did a small amount more than I did on Tuesday - not much, just marginal, really. I can really feel in my abs that I am not used to sit-ups!! I saw the friend who runs the bootcamp that I loved so much and we had a brief chat - I hope to be able to return to bootcamp in January or (more likely) February. It did me so much good earlier this year and, while I might have to adapt some of the exercises to accommodate my shoulder and neck, I should be able to do quite a lot of it once I have increased my base fitness levels. I am trying not to dwell on how fit I was earlier this year and instead am looking for the positives - for example, I weigh quite a bit less than I did at the beginning of the year, so some exercises will be easier on my joints. Result! I am also hoping that this return to exercise will help with my depression, so by the time I talk to my GP next week about it, I will have several gym sessions under my belt and might be able to see some improvement. However, I am not ruling out the need for a/ds if both my doctor and I agree they could help.

I was so cold last night just wandering around Westerham that I said to Neil I shall have to devise a cold weather clothing strategy for when we go to Vienna next month! I had on two long sleeved tops, a cardigan, a coat, scarf, hat, gloves etc and still needed to wrap a rug around me to keep warm outside. Methinks it might be thermals for Vienna - luckily I still have the thermals and buffs etc that I bought to climb Kili, so they ought to suffice, since I have never experienced cold like I did at the summit of Kili and Vienna should be milder - shouldn't it? I suppose I have fewer layers of fat to keep me warm now, which makes a bit of difference.

I tried a sip of red wine last night while we were out - the wine shop was doing a tasting as part of the Christmas shopping evening, and Neil tried a red wine that he said was really smooth, so I had a sip. Nope, total vinegar taste :-( Perhaps I am destined never to like the taste of alcohol again - which is fine, actually. Mind you, I have quite a few bottles of fizzy which I have been kindly given by friends over the past few months, so I might need some volunteers to help us get through them :-)

 Once more, I send gentle hugs to my friend who is on Day 3 of her course of radiotherapy and feeling fine so far. And once more, my love and thanks to everyone for supporting and encouraging me as I take my small steps towards recovery.

Wednesday, 23 November 2011

6 month anniversary - celebrate or commiserate?

Today it is exactly six months since my operation to remove the cancerous parotid gland and lymph nodes (or, in technical terms, a parotidectomy and modified radical neck dissection) and six months since I woke up with a new face and in a new world.

In these six months, I have learned a lot about myself and other people. I've learned that if I don't make an effort to go out in public,there's a risk I might just stay indoors and become a bit of a hermit. I've learned that I find it hard to let myself get upset and angry about it all. I've learned that I can generally cope but sometimes need help to deal with my emotions. I've learned that physical exercise is essential for me to maintain emotional equilibrium. I've learned that I care more about what I look like to the world than I thought. But above all, I've learned how absolutely wonderfully caring people are - all the medical staff who have cared for me at each stage, my church family and friends, my neighbours, my good friends - those I see regularly and those I see rarely - my three lovely friends from school (still in touch after knowing each other for over 40 years and still all as loopy as ever!) - and, most of all, my amazing husband and children. Neil especially has devoted all his time and energy to caring for me when I have been physically incapable of doing things, to reassuring me that he doesn't notice my facial palsy and that he loves me just as much as ever, if not more. He has been, and is, the rock on which I set myself to face the world.

There's a lot to be thankful for there, really. I have learned that people who matter don't give a fig about how I look. They are just happy I am here and that's exactly what I feel - I would rather look different and still have some side-effects even months after treatment than not be here at all. I have been given a second chance at life and I am going to make the most of it.

So, in answer to my title question - should I celebrate or commiserate - the answer is: CELEBRATE!!!
I'm still alive. If I hadn't gone so quickly to get checked out and if the doctors hadn't treated me seriously, there's a chance I might not have been. We shall celebrate this evening, not in the time-honoured fashion with a glass of fizzy (still can't abide the thought, let alone the taste, of any alcohol) but by going to hear Charley Boorman talk about his various adventures both with and without Ewan McGregor. Amy is particularly interested because of their Mongolian adventure and because they donated books to her fundraising efforts last year.

Special wishes today to my friend I mentioned yesterday, who starts her radiotherapy today.

Tuesday, 22 November 2011

It's a workout, Jim, but not as we know it!

...and the news today is that I returned to the gym! Yes, after six months of almost no physical exercise bar physio in the early months and some walking, I renewed my membership of our local leisure centre and toddled along there at half six this morning with Neil. I have to say, the leisure centre have been really helpful - when my membership expired a couple of months ago, I didn't see any point in renewing it, so they phoned to ask me if I wanted to renew and offered me the standard renewal discount. I explained why I hadn't renewed and they said they would honour the discount whenever I wanted to renew, given the circumstances. Amy then asked for gym membership as her Christmas present, so I entered into negotiations with an extremely helpful employee and was able to take out partner membership for Amy and me and get my renewal discount on top. How lovely to have someone really taking the trouble to sort things out for me.

I do believe that returning to exercise will help my mental health - I miss exercise, the buzz, the knowledge that I am doing myself some good, and I know that, if I hadn't been so fit earlier this year, my ability to deal with the physical side-effects of my treatment wouldn't have been so good (I shudder to think how much worse it could have got, to be honest!). I discussed the fact that I miss exercise with my psychologist last week and I do feel as if returning to the gym and planning how I will build up my stamina feels a positive thing to do and that I am taking back control of a part of my  life. One of the big things for me has been that, right from the day of diagnosis, I lost control of so much of my life and became someone who reacted to what the medics decided was necessary. I know that this was exactly the right thing to happen and that I had to put my trust in them (which I willingly and gladly did) but oh, the lack of control has been hard, especially for a control freak like me!. So taking back control of my fitness feels so good - even though what I did at the gym this morning was a fraction of what I was doing earlier this year! However, I need to take baby steps and base my progress on how I am  now, not how I was before.

I heard from a friend yesterday, someone who follows this blog, and she told me that she too has joined the big C club - neither of us wants to be members but once you're in, you're in ( a bit Hotel California - you can check out any time you want, but you can never leave) and, as she put it, the price of membership is very high. She starts radiotherapy this week and I want to wish her all the love and luck in the world - you know who  you are! I'm glad that my blog has helped her a bit, as that was one of the objectives of setting it up.

Yesterday I went for lunch to our local Italian restaurant with two of my neighbours and had a lovely time. I didn't too feel self-conscious being out in public, the waiting staff didn't look twice at me (although they did ask if my meal was okay because I had left so much of it, but once I explained about lack of appetite, they understood. I should have just got a child's portion, really!), and generally it was fine. I have to go out to our local shops today and at the moment I can't predict how I will react. I really want to go into Croydon to do some stocking-filler shopping but I don't quite feel ready to face the crowds on my own, so that might be a bit too challenging for me. If I had someone with me, I'd probably be okay but there's not really anyone available. I shall have to work on this!

Today I have been doing some brain work, as I have been asked to write an exam paper and marking scheme for some overseas students. I started working on it last week and finished it this morning - it's been put to one side for the moment so I can review it objectively later on today or tomorrow morning. It feels good to use my brain and to feel that I can add value (hopefully!) to an organisation. It's been a useful distraction technique and I need to find some more of them.

 Next appointment with the psychologist has been booked for 6th December. I have lots of appointments in the next couple of weeks - speech therapist next Tuesday, followed by GP on Thursday and then off to Marsden  to see dental hygienist, then psychologist, then oncology consultant. Between all those and various lovely friends coming round for lunch, I am pretty booked up. It all helps keep me distracted and gives me a different focus for some of the time - at least, the social events do!

And that's all from me at the moment!

Monday, 21 November 2011

That was the weekend that was.......

Thank you for the comments on my latest blog. I am processing what the psychologist said and will talk it through with my GP when I see him next week.

At the moment, I am still undecided about whether to take a/ds or not. Part of me realises that they can be a big help but part of me is a bit fearful. Maybe that's silly, I don't know. I also think that if I were able to exercise, that would really help me -not just because of the endorphins and how they make me feel, but also because exercising is normal for me and would make me feel that I am getting back to my old self. With that in mind, I have been in contact with our local leisure centre and have managed to negotiate a good deal with them for me and Amy, a partnership membership which cuts the cost and they have also honoured my renewal discount (which they didn't need to do, as my membership lapsed a couple of months ago and the discount applies if you renew immediately). However, I explained why I had let my membership lapse and they have been really helpful. I think I can start doing some cycling on the exercise bike to strengthen my leg muscles and do some squats and lunges to tone up a bit. Maybe some sit ups, depending on how my shoulder reacts!

I really do think that proper exercise will help my mood. Neil took me out for a lovely autumn walk yesterday, in the sunshine (always lifts my mood anyway) - he could see my mood was sinking a bit and fresh air and exercise always  help when I am like that, so hopefully a more structured exercise routine will benefit me. I have to find some way to protect my face from the impact when I do start running again - there's a risk that the muscles on the left side of my face will lengthen if they're not protected, which would reduce the effectiveness of any reanimation surgery that the consultant might do in the future. Does anyone remember the face bra from Ally McBeal? I think that's what I need! I can tape up my face (I tape up my forehead every day anyway) but it won't stop the impact jarring. I am seeing my speech therapist next week and she specialises in facial palsy so hopefully she will have some advice for me.

On Saturday, Tara and Andy (two friends from Runners' World) came over for lunch and what a lovely time we had! It was good to see Tara again after far too long (about 18 months!) and although I have seen Andy in the summer a couple of times, it was good to let him see how much my face has improved since the early days (although improvement is relative, isn't it?). Tara had knitted me some fingerless mittens, which I wore on my walk yesterday and Andy gave me a book which Neil is looking very interested in, so I may have to wait my turn to read it! I enjoyed cooking lunch for us - I like cooking when I have time to relax and enjoy it, with some music playing and the chance just to potter around in the kitchen. I think the kitchen is my favourite place in the house and I love eating in there rather than the dining room - it just feels more homely and relaxed.

Busy week this week but with work (finishing the marking scheme for the exam paper I have written) and social events - several lunches this week and on Wednesday evening, Neil, Amy and I are off to see Charley Boorman talking about his adventures, including riding motorbikes from London to New York via Mongolia! Of course, that's particularly interesting for us because of Amy doing the Mongol Rally last year and, in fact, Charley Boorman and Ewan McGregor sent her and her team-mates copies of their book about their experiences for them to raffle for their charity, so there's a bit of a connection there already. I will find it a real shock when I have to go back to work and can't arrange my week around my social life!

Today is an expensive day - not only will I be paying for gym membership (Amy's is her Christmas present, so that's her big present sorted!) but I also had to tax my car - yes, the car I never get to drive at the moment! We have arranged for her own car to be MOTd so we know what work might need to be done to it, so hopefully we can get her car back on the road and I can get mine back! Now I am able to drive again, I miss my lovely car.

On the pain side, the mouth ulcers are getting better, although as the day goes on, they start to ache a bit. My neck and cheek are still a bit tender and swollen but I have cut right back on the painkillers and am down to one painkiller every few days, if I feel the need. It all seems to be a bit more bearable and, as I am eating better too, I think that helps.

Enough rambling! I need to get on with this exam paper. Thank you for your support (that includes all the silent readers of this blog - you know who you are!) and for your comments. Biggest thanks go, as always, to my lovely husband and children. Can't do it without you, especially Neil.

Wednesday, 16 November 2011

The psychologist will see you now.....and again!

So, yesterday I had my appointment with the psychologist. For the first time, the system broke down - I had booked the appointment a few weeks ago through the main hospital switchboard but it hadn't been transferred to the psychologist's diary, so she was totally unaware that I was turning up! My appointment was at 2, and she saw me at 2.40 and apologised that because it hadn't been in her diary, she could only give me 20 minutes, as she had a 3.00 appointment. In the end, however, I was there till 3.30, from which you might gather that there was rather a lot to talk about. To the poor 3 o'clock appointment who had to wait - I apologise. The other glitsch was that her notes recorded that at my previous visit (my assessment), I had asked to transfer to a counsellor at another hospital - errr, no! Cue much confusion and apologising.

We had a long chat and I got upset. Why? Because I feel ugly, because I feel guilty for not being more grateful that I am in remission, because I still don't believe I am in remission, because I am anxious about leaving the house and being seen, because I miss exercising, because I don't feel attractive, because everything feels so uncertain and so on.....out it all came. Feelings of guilt. Feelings of ungratefulness. Feelings of anxiety. Feelings of sadness. Feelings of loss. Feeling unattractive and ugly.

She asked me if I ever just curled up in a ball and howled. "No", I answered. "Why not?" - because I feel I should be coping and not getting upset. After all, I am still alive and the doctors reckon they've got rid of all the cancer. Why do I feel it's so important to cope? Because it's what I do. Always have done. And it's hard to think or feel that actually, maybe I am not coping so well with this. I don't like the lack of control I have over so many things - the after-effects of the treatment affect what I can eat and drink, how I eat and drink, what I am physically able to do. I told her how much I miss running and other exercise. How I have to steel myself, even after several months, to leave the house and be seen. How I feel as if my face isn't really part of me but something I take out with me, some ugly adjunct. How wonderful Neil has been, and the children, and my friends and that I worry that getting upset and not coping will make them feel bad or guilty. How I can't see my life returning to any kind of normality that I am comfortable with.

We talked it through and she said (and I know she said this before) that I have to give myself permission to be angry or sad. I have suffered a huge loss and I need to grieve for that. I have had a life-threatening illness and I need to deal with that. My life won't return to what it was and nor will my face. I need to deal with that. After completing a couple of questionnaires, she assessed me as having mild to moderate depression (not clinical depression, more reactive to the situation - can't remember the exact term she used) and borderline anxiety and said that she would have been more surprised if I hadn't turned out to have some kind of depression, given what I've gone through and am still going through. She suggested that I talk to my GP about whether anti-depressants would be a good idea for me and she's going to arrange further counselling sessions for me with her, on a regular basis. The combination of talk therapy and ADs is apparently very successful in cases like mine.

So, there we have it. I am not coping and I need help. I find it strange and unsettling, as I am used to being in control and being able to manage situations and to be struggling like this is new territory for me. I am not one of those people who thinks it's perfectly right to go for help if you break your leg but your mind is just something you sort out yourself - I have never been like that. I am just finding it a bit hard to process the fact that I need this kind of help myself now. I've booked the appointment with my GP for a fortnight's time (can't see him any earlier and I think that I need to talk to the person who knows my medical history best) and in the meantime I am going to give free rein to my emotions and feelings. I have already said to Neil that the diagnosis in no way reflects on the support and help that he has given me, because I do worry that he might think he's not done enough for me - nothing could be further from the truth. This is just another thing in a long list of things - another ripple in the pond caused by a big stone called Cancer being lobbed into it.

I have done my daily walk into town today and ventured into a few shops. It doesn't get any easier but it has to be done.

Monday, 14 November 2011

Remembrance Sunday

In keeping with my decision to try and update more regularly, you may well find that some posts are pretty much not about being ill or having a wonky face, but more about just life in general. I think that's quite a good thing, as it means my focus isn't just on what's happened but is turning more outwards.

Anyway, after Friday night's outing and a quiet Saturday, I went to the Remembrance Day service at  my church yesterday.  A beautiful and moving service and yes, I did shed a few tears. I always do during the 2 minute silence and The Last Post. I observed the silence at home myself on Armistice Day itself and cried then too. The thought of all those wasted lives and the devastation is just heartbreaking. It's even worse when you think of all the wars still going on. Apparently, since the end of the Second World War, there has only been one year (1968) when a British serviceman/woman hasn't lost their life in some conflict. I know we tend to think of war widows as elderly women from WW2, but so many now have lost their husbands in Iraq or Afghanistan and there are lots of young children growing up having lost a parent in military action. So sad.

It was a beautiful day yesterday, though, with glorious autumn sunshine, so Neil and I went for a walk in the afternoon. We thought it was appropriate, on Remembrance Sunday,  to drive out towards Chartwell and walk over the Downs to Churchill's old home, where we shared a light lunch. I find it fascinating to go to places like Chartwell and imagine what conversations took place there - if only those walls and gardens could talk! We didn't do a long walk, so I wasn't too tired at the end of it. I would like to get into the habit of going for a walk several days a week but it's sometimes hard to motivate myself to get out of the house, to be honest. I know that this is linked to how I feel about how I look, so I shall discuss this when I see the psychologist tomorrow. At this rate, I shall have a great big list of things to talk to her about! I'm not sure an hour will be enough...

I did so miss doing the Sodbury Slog yesterday, with my running friends. I have looked at the photos on Facebook and it looks just as much fun as ever. It's on my calendar for next year when, by my calculations, it should actually take place on Sunday 11th November, so it will be even more poignant. The race always starts with a two minute silence and The Last Post, so I always start the race in tears. Several people cried on my behalf yesterday, I believe, for which I thank them!

Today - well, today I have actually been doing some "brain work", as I am writing an exam paper. There's nothing wrong with my brain (although the psychologist may think differently tomorrow!) so as long as I don't try to do too much at one time, I can cope perfectly well with it. It feels good to be doing something "normal" again. I shall work on it over the rest of this week, doing a little at a time. I really do hope that, come January/February, I can start to pick up a bit of work and begin to feel that I am making a contribution to an organisation. It's about self-worth, really - although earning some money would be nice, it's more about feeling that I have something to offer and can make a difference in the public sector. However, I will be careful not to do anything that compromises my continued recovery (and in any case, it isn't easy getting work at the moment, especially in the public sector!). I don't want to work full-time again, so it's a question of looking for some part-time /short-term assignments. Anyway, that is a couple of months away, so no point in fretting about it now!

Hope everyone is having a good Monday, despite the dull, overcast weather.

Saturday, 12 November 2011

My face went out for the evening....

...and it was okay.

I experimented with a little make-up (thank you to the very helpful ladies on Mumsnet, who gave me some advice) and ended up with a little eye make-up, mascara on the top lashes only and I taped up my forehead (as I do every day) and my cheek as well. Travelling up to London was quite challenging, especially the Tube, where it was crowded and I felt as if people were staring at me. It was very hot and stuffy too, so I started worrying that I was going to faint or something equally embarrassing. However, Neil was looking after me and made sure I got a seat and generally took care of me. We arrived at the hotel (finally! the building numbering was very peculiar, so we ended up walking in different directions before going back in the direction we first went in!) and walked into the drinks reception. That was quite challenging, as it was very crowded and I am not good with crowds at the moment. However, there were plenty people I knew there, including several who hadn't seen me since September and who were impressed at how much better I look now compared to then.

Of course, there were loads of people who hadn't seen me since last year, and didn't know what had happened in some cases, so I did have to explain a few times - which I always find tiring and which carries the risk of bringing my emotions to the surface. However, I managed to hold it together. We went into dinner and I was talking to a friend, whom I hadn't seen for a couple of months, and she offered us a lift home in her cab, all the way from London to Oxted - fantastic! It meant I could relax and enjoy the evening without worrying about travelling on the tube and train again.

The meal was lovely and I was very touched and surprised to be presented by the Chairman, whose guests Neil and I were, with a beautiful bouquet and a bottle of champagne in recognition of what a bad year I'd had and that they appreciated me being there. It was so kind and entirely unexpected - and made me even more glad we were going home in a cab, rather than manoeuvring everything home on the Tube, especially because I discovered en route last night that my feet appear to have shrunk as I have lost weight and my shoes come off really easily (found this out when we rushed to get on the tube train and my shoe came off! Luckily it didn't skitter across the platform and fall under the train, or we could have had a problem!).

I managed to eat almost all of the starter, which was a salmon and crab mouse and the perfect texture for me. The main course was small rondelles of chicken with a creamy sauce and pastry, mushrooms, beans and artichokes. The chicken was a bit too much for me so I ate the mushrooms, beans and sauce. I ate the mousse part of the pudding but the berries were a bit too difficult for me. All in all, not a bad effort, I thought. I managed a few sips of champagne before it started tasting acidic so I just switched to water. Neil was drinking red wine, which normally I would have enjoyed, but even the smell of it made me think of vinegar so I didn't bother even tasting it. It meant when I got home I was able to take a sleeping tablet, safe in the knowledge that I hadn't really had any alcohol.

So, overall, a good evening. I didn't get up to dance (very unlike me!) because I didn't feel I wanted to put myself quite so much in the public eye. I had already asked the official photographer not to take any photos of me. I have to admit, my dress looked very funky and I would ever have worn it if I hadn't lost so much weight and felt that my legs don't look quite so much like tree trunks! I was very tired by the time we got home (just after midnight) but I feel that I have made a good social effort and I did enjoy seeing old friends - including one very old friend with whom we had lost touch about 10 years ago; it was great to see her again and we have promised to meet up soon. I am glad to report that her glorious red hair, of which I have always been supremely envious, is still gloriously red. I am still supremely envious :-)

I am booking an appointment with Looking Good, Feeling Better - they provide beauty workshops for women with cancer so that we can try and make the most of ourselves and try to soften the effects of surgery and treatment. Many people have also suggested going to a big department store and asking advice from MAC or Bobbi Brown, so I shall try to do that when I feel up to going to a big department store. I am hoping that will be soon.

I was tired today after the evening's exertions, so I have been taking it pretty easy. I went to a craft fair this morning with my friend Sally (it was in the local school, so literally round the corner from our house) and apart from that I have just relaxed. I didn't even have to cook dinner, as Neil created a masterpiece in the kitchen. I could get used to being waited on like this, you know.

Tomorrow, Remembrance Sunday, I would normally be running the Sodbury Slog - my absolute favourite race. Nearly 9 miles of off-road mud and mayhem - just the best fun! I shall miss it terribly. I was going to go and support but realised firstly, that I would find it hard seeing everyone and second, that I would find it weird watching rather than participating. Next year I shall be back, waist deep in mud and loving every minute.

I've managed to get through today without so far taking any co-codamol - this is real progress, although I have used the instillagel syringe in my mouth, as my mouth is still sore from mouth ulcers.  I think the swelling in my neck, under my chin, has started to go down a bit. These are all good signs!

So, overall - a tiring but successful evening last night. I worried beforehand but enjoyed it once I was there. Next time, it will be easier.

Friday, 11 November 2011

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.

Wednesday, 9 November 2011

...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

Tuesday, 8 November 2011

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.

Monday, 7 November 2011

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.

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".