Tuesday, 27 September 2011

Grumble, grumble, wonky smile....

Silly me, I didn't say in my last blog post what our daughter's dream job is! She is Community Fundraiser for the Orpheus Trust, a charity which uses music and creative arts to provide young adults with special needs (physical and learning) with the opportunity to develop new skills, learn independent living and feel a sense of self-worth. It was set up by Richard Stilgoe some years ago and for a long time it was financed by royalties from the lyrics to "Cats", which he wrote but in recent years they have had to look more widely for their funding - which is where Amy comes in! She'll be working with a more senior fundraiser who has yet to be appointed but she is chock full of enthusiasm and ideas and can't wait to start (Thursday of next week). Best of all, it's very near home so we get to have her living with us for a while yet - no empty nest for me at the moment, thank goodness!

In other  news, I was at hospital for my weekly appointment with the consultant last Friday and <pause for fanfare> I actually drove myself!! I had gone out on Thursday with Amy for a test drive, just to make sure I felt confident enough and it was fine, so I thought I would give it a go.  People have been tremendously kind, taking me to and from hospital, but it's hard to lose the independence that driving gives you, so I was keen to see if I could cope without having to make further impositions on friends and family. The journey involves a bit of the M25, so it was a good test to do some motorway driving and all went well, even though on the way home I decided to take the scenic route and came across an unexpected road closure, so had to drive back to the motorway a different (and not very well sign-posted!) route. There's something not quite right, though - I have a lovely sporty Ford Cougar which Amy is driving (I put her on the insurance when she came home because I wasn't driving and her Focus is off the road, needing some work done) and I ended up driving Adam's little Corsa! Doesn't seem quite right, does it?? She's not insured for the Corsa but I am, so she's loving this situation, as you can imagine :-)

Back to the consultant - he was very pleased with how the skin on my neck has healed, although there's still a stubborn spot behind my ear and on my ear lobe which is refusing to heal quite yet. The inside of my mouth is still swollen and sore and there's a large mouth ulcer right at the back of my tongue which is proving somewhat recalcitrant and is stopping me eating because it hurts to chew and swallow. Not much I can do except just leave it to go away in its own sweet time. I had lost yet more weight (little appetite, mouth ulcer yada yada yada) so the dietitian had some words with me. "Drink milk", she said. "Hate milk", I replied .....anyway, I am eating more and it's all good home cooking so hopefully when I go back to clinic next week I will at least have stabilised, if not put weight on. In the meantime, it's quite gratifying to know that I am the lightest I have been for many years - even at the height of marathon training, I was heavier than I am now.  Hey, you have to look on the bright side, don't you?

The consultant doesn't want to see me for a fortnight, so that's progress. Hopefully the gaps between appointments will get longer although at some point I will need a scan to check that the treatments have got rid of all the cancer - that will be a worrying time, but I can't influence the outcome so am putting it out of mind.

The other side of things is, of course, the facial palsy. On Saturday, I went to a support group meeting at East Grinstead Hospital for people with facial palsy. There's a charity being set up and this was the second meeting of the group (the first one was when I was in hospital having surgery, so it's all fairly new). Neil and I went along and, although most of the other people there seemed to have developed palsy due to acoustic neuroma or Bell's Palsy, it was still refreshingly relaxing to be in a room where having a wonky face was the norm, not the exception! It was a useful meeting, discussing logos and straplines, what things we wanted in our newsletter etc, but surprisingly tiring. Talking really does wear me out (oh, the irony.....). It was a beautiful day, so on the way home we called in at a little pub/restaurant and ate some lunch outside, watching water-skiers on the lake alongside. The next development on the facial palsy side is that I have my initial consultation with the plastic surgeon (why does that look and sound weird? As if he's a Thunderbird puppet surgeon, not a real person....or is it just me?) in two weeks' time. I shall find out what he thinks he can do for me and hopefully get some ideas of timescales. It won't happen till well into next year, I suspect. I am so lucky to be a patient at East Grinstead Hospital, as they do truly ground-breaking work with this type of surgery, dating from the Second World War, when Archie MacIndoe did amazingly innovative surgery and treatment with pilots who had been hideously disfigured by air crashes and fires.

On Saturday evening we were taking part in a quiz - our team won last year but I wasn't feeling confident about my ability to answer many questions, given how mushy my brain has been recently but I am pleased to report that we held on to our title (nail-biting stuff - we only won by one point!). We won a voucher towards a meal at a local restaurant and a bottle of champagne (to add to the pile waiting for when I feel like drinking again!) and it was good to catch up with the others in the team, two of whom we hadn't seen for several months. I didn't feel too conspicuous because there were a couple of others at the quiz who had physical impairments but it was very difficult when they wanted to take a photo of the quiz-master handing over the prize to me (as team captain, I suppose) and I just couldn't handle the thought of having my photo taken. It makes me go cold inside to think of my photo being taken and then published somewhere. Whether that will change, I don't know, but I suspect not.

I think the problem is that I have felt from the beginning, when I first saw my face after surgery, that I look so different - not just different from what I used to look like, but different from "normal". That's not changed. Even after whatever surgery or other treatment the plastic surgeon decides on, I will never have my old face back, my old smile, the range of movement on the left-hand side. The surgeons may decide they will never restore my left eye to its old state. That's pretty hard to come to terms with, especially given how people make judgements on others based on what they look like. I know I was never in the running for any beauty titles, but I was at least passable. Nowadays, I just look wonky. I know I sound really shallow but it's quite hard knowing that the face you've had for 50 odd years has gone for ever. As if the wonkiness weren't enough, unfortunately, the consultant's prediction that my teeth would go yellow has also come true - one more reason for me to feel self-conscious about smiling and opening my mouth. Sometimes I feel the ripple effect from those little lumps on my jaw is never-ending. I didn't realise just how far-reaching the effects of treatment would be.

On the plus side, however, Adam has settled in really well at uni and seems to be embracing student life with gusto :-) Yesterday he was learning about how to teach maths to children, so it sounds as if it's good practical stuff.  He texted me this evening to say he is off to a student party where he has to dress as a school boy - classic stuff. Meanwhile, Amy is gearing up for her new job and Neil is trying to sort out a villa for us in Spain so we can get away in a couple of weeks' time - we both desperately need a chance to relax and forget about hospitals for a while, especially Neil, as he's been doing so much at work and at home over the past several months.

Goodness, this blog reads like "Poor me, look at all this horrible stuff" - and yes, it is horrible and it is hard to deal with. But I have so much to be thankful for - Neil, Amy and Adam, good friends, great hospitals and staff, sunny weather (this week at least!), visits from friends, invitations to meet up with people - really, I am very lucky. Added to which, I have a steady supply of super-duper painkillers to make it all go away for a while - I'm laughing, really :-)

Tuesday, 20 September 2011

Leaving the nest, getting jobs, seeing old friends, crying....

It's been a busy week. After last Tuesday's blog, I continued to feel stronger each day, with a bit of appetite, working towards the weekend, when our son was due to go off to university. I was determined that I would be well enough to go up to Carlisle with him, even if I ended up sitting in the back of car, dozing for most of the journey. That was my target and everything was gearing me up towards that.

On Thursday morning, we got one of the few pieces of good news we've had as a family over the past several months - our daughter, Amy, was told she had been successful in her interview for what she describes as "her dream job". She had been interviewed on Monday of last week and the expected process was a second interview, if she gave a good account at the first interview. Instead, she got a phone call from the agency handling the recruitment to say she had the job and didn't need a further interview. It was fabulous news for her and for us - she will be living at home, so we get to see lots of her, and it's exactly the kind of job she has been wanting to get. Already she has taken over the dining-room table with files, folders and posters as she starts working on things before she has her official start date - that's my girl!

Every year, I help organise a conference for my professional Institute at Reading University. It's very dear to my heart: I have worked closely with my fellow committee members for quite a few years and I meet up at conference with people I only see once a year. Obviously, this year I haven't been able to play much part in the organising, although the committee has been fantastic about keeping me involved with all the details and even trekked out to Sweeting Towers to hold a committee meeting here so that I felt part of it. The conference took place from Thursday afternoon to Saturday lunch time and it felt strange that I wasn't going to be there, greeting arrivals, playing a full part in it, sorting out problems and generally enjoying the social side of it all. I felt a bit low on Thursday, thinking of what was going on there and wishing I were part of it. I was invited to any part of it I felt I could make, so we decided that, if I was well enough, I would go to the black tie dinner on the Friday evening and that Neil and Amy would come along with me. The committee were fabulous - they booked me into my usual room, got an extra bed put in for Neil in case we decided to stay the night, booked a room for Amy too and just made us so welcome.

The dinner was lovely, although I didn't eat much. I felt quite self-conscious about how I looked, because although the Chair of the Committee had told delegates that if I turned up, I would look a bit different as a result of my treatment so people were aware, there were quite a few new delegates there who must have wondered who this wonky-faced woman was, apparently holding court in the dining-room! However, once we all started talking, I relaxed a bit and really enjoyed the evening. After the meal, we watched the group presentations, which were themed on Dragons' Den - good fun to watch, but by about 10 o'clock, I was ready to leave but it was difficult to get up halfway through and make our exit, so we stayed till the presentations ended. Then came the very difficult bit - the most difficult of the whole evening, actually. Traditionally, after the presentations we have karaoke and traditionally I start off the karaoke. We went downstairs to say goodbye to people and next thing I know, our daughter is telling me that she has been ordered by loads of people to get me up to start the karaoke, so I end up with Amy, Kirsten and Rosanne, singing "Teenage Dirtbag" (I use the term "singing" in its loosest possible interpretation!). It finished me. I ended up crying and really feeling how different things are now for me - looking back at how I was the previous year, life and soul of the party, singing lustily and now I wanted just to hide my poor, ravaged face away and not have to see anyone. I was paranoid about having my photo taken and felt so exposed. I know I was amongst friends, but I felt terribly vulnerable.

Anyway, we left, got home just after midnight and went straight to bed. I say straight to bed, although I got very upset about  - well, everything really. It all just came out and poor Neil had to listen to me whining and moaning and howling. As always, he calmed me down and reminded me that I have him to support me through all of this and that to him, I am still beautiful. What did I do to deserve such an amazing husband? Of course, part of my sadness was because the following day we were taking Adam off to university and I knew I would find it difficult to say goodbye. I have been lucky to have had him at home for the past couple of years and because I haven't been working full-time, I have been able to spend quite a bit of time with him, so I knew I would miss him.

We set off about quarter to nine on Saturday morning and, with one stop en route for me to take my tablets, and got to Adam's Halls just after three o'clock. His Halls aren't on the main campus and, although we were a bit worried about this at first, on reflection and having seen his Halls, we think he's actually in a much better position. His Halls is in a converted brewery (!) and he is in a flat with four other people. When we were unpacking and getting him settled in, we saw two other flatmates - a boy and a girl, although we didn't say more than just "hello" to them. Neil and Adam went off to get supplies at Tesco's and I had a rest on Adam's newly made-up bed :-) We left him just after six and went to our overnight accommodation - we were booked into a lovely country inn about 10 miles outside Carlisle. It was a smashing little place - only five rooms and a lovely country pub and restaurant downstairs. Of course, no mobile reception so I didn't pick up till the next morning the message that he sent me saying he was in the kitchen drinking beer with a couple of the other housemates and they were getting on well! If only O2 had worked there, I wouldn't have fretted for the evening! Anyway, it was rather nice for Neil and me to have a meal together and I had a delicious piece of haddock, light, flaky and delicate and I actually ate more than I have in weeks. Great night's sleep (thank you, little white sleeping pill) and a hearty breakfast in the morning (or as hearty as I could manage) and then Neil and I had a stroll around the village and phoned Adam as soon as we got a signal to see if he wanted us to call in and see him.

He did, so we drove back to Carlisle and had a cup of tea with him and then walked to his campus so we could see where he was going to be every day. He had already arranged to do the walk over with his housemates later that day, so we already felt confident he was settling in and making friends. We bought a couple of bits and pieces he needed (desk lamp and some mugs, which stupid Mum had forgotten to pack!) and then we left him to it. By the time we got home and texted him to say we were back safely, he was meeting up in the courtyard with a whole crowd of other students and they were all off on a pub crawl - I think he's going to settle into student life just fine!

I feel very tired now. The weekend took an awful lot out of me. It wasn't just the busy-ness of the weekend: going through to Reading, going to Carlisle and back - but the emotional side of it that has worn me out. I feel as if I have taken a few steps backward in terms of resilience and energy so I am going to take it very easy this week. I go back to hospital on Friday and I want them to think I have made progress.

Still, our daughter has her dream job and our son is settling into student life - so there are lots of positives and that's what I need to focus on.

Tuesday, 13 September 2011

A week is a long time in politics and a flipping lifetime in oncology!

It's now a week since my last session of radiotherapy and it's only now that I have felt able to update the blog. I knew before I started the treatment that my side-effects would be severe, that they would kick in towards the end of the treatment and that they would worsen after the radiotherapy finished for about a week or two before gradually abating. Yes, yes, I knew all that - but for the first two weeks or so, I really didn't have too many problems with the treatment apart from the sore throat and tiredness. Then the nausea and dry retching kicked in, accompanied by their mate, loss of appetite. And then, in the final week, along it came - The Sore Neck. Horrible, blistered, red and bleeding - it's not pleasant! And boy, does it hurt! So, while there was some (muted) rejoicing at the end of radiotherapy last Tuesday - those six weeks felt like they were never going to end! - there was a fairly rapid descent into almost complete misery. Couldn't eat, couldn't drink, couldn't speak, couldn't do much at all and was at the stage where a sympathetic, friendly comment from a nurse at hospital (where I still have to go every Friday for clinic) is enough to reduce me to a snivelling wreck!

Of course, the main beneficiaries of my emotional behaviour have been my long-suffering husband and children. Lucky them! I have been draped around the house - along the sofa in the sitting-room, across the chairs in the conservatory, in my bed - moaning gently like some consumptive heroine from an historical novel (and not a very well-written one at that!).  Nothing has tempted my appetite, I couldn't even taste tea (horror! I love my tea!!) and I just felt as if I couldn't see it getting better. The consultant on Friday said I had had a very sudden bad reaction to it, and that I had actually been doing pretty well until fairly recently (I believe a lot of patients get worse symptoms much earlier, so I have really been lucky, even if it doesn't feel much like it at times!). In other words - it will get better and what can we do to help you through it? I am armed with strong painkillers on repeat prescription, nebuliser, anti-emetics, sleeping tablets, laxatives (oh yes, just in case!) and fortified drinks, which taste so foul I have been making myself eat! - there's method in their madness, obviously....

The weekend: and because my horizons for so long have been home-hospital-home and now I don't have the "hospital" part every day to look forward to (?), my horizons have shrunk even more. On Saturday, there was a show by our local horticultural society and open day at our parish church (yes, that's the kind of place we live in - and love), so Neil and I decided to toddle along to give me a bit of fresh air and a change of scenery. It was surprisingly tiring, even though it is literally at the foot of our road and round the corner.  We climbed to the top of the bell tower (not as challenging as it sounds - it's hardly the Duomo!) but by the time we stopped to watch the bellringers and then went down to have a cup of tea on terra firma, I was exhausted. Cue a bout of dry retching and tears on the way home, just because I felt so weak and inadequate at not being able to do such a simple thing.

On Sunday, I stayed in bed to get some rest and then in the afternoon, we drove to the next town along, where there was a Scarecrows and Soldiers Festival. That entailed another gentle amble and a cup of tea but this time I didn't get upset, I just accepted that I had to take it easy. I did have a wry smile at the thought that I used to run the hilly route to this town and back as one of my normal training runs (12  miles) only a couple of years ago and now I can scarcely walk from the car park to the centre of town but hey ho, it's early days.

I felt well enough on Sunday, after another rest, to cook dinner - something I haven't felt up to doing for a few weeks. I made a roast dinner and managed to eat a little bit of meat and cauliflower cheese, which was more than I'd managed for a week or so. Sadly, I was unable to avail myself of the (even if I say so myself) delicious roast potatoes, as they were just too crunchy on the outside for me - maybe next week???

Yesterday I had to return to the doctor for a blood pressure check. It was pretty high last week so he wanted to check it again. He's a new GP, with enviably white teeth and so young!! Or maybe I am just getting old :-) Anyway, we checked it yesterday and it was so good that we both looked at each other and said "No, surely not?" so we had to check it again and it was absolutely perfect, so that was a bit of good news.

In other news (goodness, I shouldn't leave it so long before updating) the day after my radiotherapy ended was my birthday and how lovely it was not to have to go to hospital that day! I was overwhelmed with birthday cards, gifts, wishes and thoughts and realised once more how very lucky I am with my family and friends. My wonderful husband bought me an iPad, which I had been hankering after for ages but couldn't justify buying. It is simply beautiful and I spend many happy hours just stroking it, with a dazed smile on my face because I can't quite believe I have one!! Wasn't able to eat much of the lovely birthday cake which our friend Sally baked for me, but the small amount I tasted was very yummy indeed :-). Certainly everyone else polished it off very quickly, put it that way!

This week, I do feel as if I am making a bit of progress. I am taking a bit of interest in what is happening around me, rather than being totally insular. I was able to make dinner last night - my choice - and managed to eat a reasonable amount, although the fact that I brought it up later suggests that I went two strands of spaghetti too far! But the fact that I have any appetite at all is progress. Today I fancied a chicken sandwich, so have been working my way through that for the last four hours, with a fair degree of success. I have to remember baby steps, eat little and often and don't expect too much.

Onwards and upwards. I need to remember not to expect too much of myself and to take it easy. One of our neighbours took a basket of laundry and returned it ironed and folded, bless her. Okay, so the world won't collapse if a shirt is creased, but one has standards, don't you know? :-)

Thank you all for accompanying me on my journey so far (actually, I hate that whole "journey" terminology - makes me think I am auditioning for Britain's Got Talent) - stay with me, there's a whole lot more to go! As always, my special thanks and love to Neil, Amy and Adam. Couldn't do it without you!

Saturday, 3 September 2011

Pretty pink collar, getting steamy and other things....

Well, here I am with only two - yes, two! - sessions of radiotherapy to go until I finish this particular stage of treatment. Last Sunday I couldn't imagine getting to this point: I felt as if I were standing at the foot of a very high mountain, looking up, with leaded boots on my feet and no ability to move. But it's a case of just grit your teeth and get on with it, girl. So here I am, several days later and, in Marathon terms, running past Big Ben and towards Queenie's house. I have to say that, in every London Marathon I have run, it's been more of a trundle and less of a run by this point, but don't let truth get in the way of a good analogy!

I continued to have severe problems with nausea and dry retching but on Wednesday I saw a doctor while at hospital and he prescribed me different anti-emetics and a nebuliser, which seem to be making a difference. I have to nebulise (see how quickly I have become familiar with the language!) 4 to 6 times a day, which takes up to an hour, so I am pretty much tied to the house for most of the time. It produces a lot of steam, hence the reference to steam in the title. Flipping noisy, though! It makes me quite anti-social to be near :-)

On Thursday, as usual, I had bloods taken after treatment. Once again, I made the mistake of pulling down my sleeve after the dressing had been put on and managed to make myself bleed all over my arm and sleeve, so had to see a nurse to get it cleaned. She then decided to have a look at my neck and gave me some aqueous cream to put on it and asked me to see her again yesterday. It turns out the skin is blistering and starting to break so I now have some tubes of granugel stuff that Neil has to slather on, then a pretty pink collar which I have to wear around my neck to stop my clothes irritating the skin - it's not quite like the funnel which dogs or cats wear to stop them scratching their wounds, but it's not a pretty sight, despite the pastel colour and contrasting strip of micropore!

Friday was consultant day, as usual. He said my throat and mouth are doing well and that I have to be prepared for continuing to feel worse for about two weeks after treatment finishes before I will then start to feel a bit better and that it will be a long, slow process. I have confirmed I want to stay at the Marsden for my oncology follow-ups - they will see me once a week to monitor progress, then two-weekly, then monthly, three-monthly, six-monthly etc. My appointment with the consultant plastic surgeon is on October 13th, so another milestone for the diary. And I am meeting our new GP on Tuesday (our old one retired) - I thought I should make his acquaintance sooner rather than later, as he might well be seeing a lot of me over the next few years and I might well be one of his more unusual cases!

So far I have lost 8 kilos, largely because I just have no appetite. Nothing tempts me at all, so if there is anything that I have the slightest desire to eat, I have to try it just in case it makes me get some calories in me. This week I have had a little bit of beans on toast, some scrambled eggs and a tiny bit of mushroom risotto. Today I fancy an iced coffee and I have home-made vanilla ice-cream in the freezer, so that will do me  a bit of good. I don't recommend this diet - no food means no energy :-(

As always, my thanks to everyone for their thoughts, prayers, practical support and help. Our son and daughter have been ironing, cleaning, vacuuming during the week and my lovely husband does all that and more for me - he really is the best support I could have wished for and I wish I could find a way to show him how much he means to me. Any suggestions, please?