Monday, 30 January 2012

Come in Beyonce, but could you take your shoes off, please?

Now then, the big news around here towards the end of last week was that Beyonce and Jay-Z were allegedly moving to these here parts. Apparently where we live is known as "The Beverly Hills of the UK" - this is news to us and obviously whichever journalist coined that phrase hasn't been to our local Weatherspoons on a Friday night in term-time, when the cream of local youth are indulging!

It was a bit surreal to see our little town on the ITV London/South-East news, interviewing people we knew and panning over the fields around the town. The last time we featured so much on the news was when Princess Diana and Dodi Al-Fayed died, as Mohammed Al-Fayed lives on the outskirts of the town - well, I say "lives" - he has a property surrounded by a massive security fence, with guard dogs prowling around the perimeter fence and doesn't spend more than 90 days in the UK per year for tax purposes. It's not as if he pops in to his neighbours on a regular basis for a cup of tea and a fondant fancy, is it?

Anyway, to get back to Beyonce. Of course, this was all nonsense. There's nowhere that would have the kind of security possible for someone of her fame and, in any case, it would completely change our little town, having loads of fans descending upon us. Let's face it, the coffee shops just wouldn't be able to cope with this extra influx of customers, although the charity shops might be quite gleeful about the possibility of getting Beyonce's cast-offs to sell :-) How did it all start? I have it on good authority (Facebook!) that this originated from a family discussion over dinner one night last week where the question was asked about how easy it would be to make people believe something quite unbelievable, using the power of social media. Cue a tweet and the next thing you know, there are tv crews descending on the town. Isn't it just incredible how a single comment can grow exponentially to become a "true story"? It turns out that we know the family where this story was born....not saying who they are, though!

What else has happened since I last posted? I've been quite busy catching up with friends. One friend came over for lunch last Tuesday - I hadn't seen him for about a year and a half, during which time he has had a hip replacement and I've had my various treatments, so we were laughing about being a couple of old crocks as he hirpled into Oxted with me and my wonky face :-) On Wednesday, I had a full day up in London, starting off with meeting an old colleague and friend for lunch, then travelling on the tube to my Institute HQ, where I caught up over tea and cake with another friend and then attended a meeting of the organising committee for summer conference. It felt really good to be involved again - I have been part of this committee for 10 years and chaired it for 8 years until I stepped down in 2010 (it's almost as if I knew I'd be out of action in 2011, isn't it? Spooky!). Last year I couldn't be very involved at all, although my lovely fellow committee members trekked out to Oxted one evening to hold a meeting at Sweeting Towers, just so I could still feel part of it all. Truly lovely, kind people. This year, I am able to take a much more active part in things and it was so refreshing to be bouncing ideas around with everyone and building on work already done. Every year, we support a charity and hold various fund-raising events, usually raising a few hundred pounds over the course of the conference. We've supported the British Paralympics Association, Macmillan, Breast Cancer Care and Diabetes UK over the past few years. One of our agenda items was to nominate and discuss charities for this year's conference. Thanks to my supportive committee friends, we have decided that this year we will support a new charity, set up last year and currently the only one in the UK specifically to support people with facial palsy: Facial Palsy UK. I feel very honoured that we have chosen to support this group, from which I direcly benefit, and also humbled at the generosity of spirit of my fellow committee members, several of whom I'm sure had charities they feel passionate about but who were happy to say immediately that we would support my suggestion. I love these guys!

After the committee meeting, some of us went for a meal, so it was a long time out for me and involved several tube journeys, all of which I coped with fine. My lovely husband asked me to text him and let him know what train I was on and when I emerged from the train at our station, there he was, waiting to walk me home - what a star!

And so to Thursday, and another lunch up in London (I am such a lady who lunches nowadays - how will I keep my social life going once I return to work? It's going to be difficult...). This time I was meeting with two friends, one of whom had come over to see me in September and the other, someone I hadn't seen for over a year. We were lunching at the Royal Thames Yacht Club in Knightsbridge (how posh is that?!) and we had a lovely time, sitting in the dining room overlooking Hyde Park, watching the runners and walkers out in the wintry sunshine. Great food and great conversation. It was really encouraging that Tony, who had seen me in September, could see a real improvement in my face and even I, trying to be objective rather than critical and pessimistic, can see that there is much more movement on the left side of my face than I had a few months ago. Of course, it's all relative and I'm still a long, long way from having a properly animated face on that side, but it's good to know that there is some nerve regeneration and that the exercises and electrode stimulation are having some effect.

Since Thursday, life has been much quieter and Oxted-centred, although I had an interview on Friday morning about doing some volunteer work at Orpheus Centre, where Amy works. I've filled in my CRB form and need to wait for an enhanced CRB check to be carried out, so I won't be able to start there for a little while yet. Apart from this, my time has been spent doing domestic stuff - shopping, cooking, cleaning, laundry etc. I seem to be turning into a right little Hausfrau. Next thing I know, I will be stencilling "Kinder, Kuche, Kirche" on the kitchen wall...or maybe not! I'm still trying to keep my exercise regime going: last week I did an exercise class, zumba and gym and tonight I am off to an exercise class with Amy, with zumba tomorrow and Thursday and some gym sessions at some point. I have speech therapy on Thursday afternoon and I am hoping my speech therapist will be pleased with my progress - it feels almost like going to a school parents' evening!

This has been a mammoth post, so I shall end it with my usual thanks to everyone for your support and thoughts and, as always, with my best love to Neil, Amy and Adam.

Monday, 23 January 2012

I just can't be King!

After the relief of Friday's scan results, it was a case of full steam ahead for the busy weekend. And boy, was it busy!

On Saturday morning there was a meeting of the Facial Palsy support group, at East Grinstead Hospital. This is a new charity that has been set up and the support group is for people like me, who have facial palsy caused by any reason, to meet a few times a year, share experiences, have speakers, provide support and get the chance to feel that you don't look terribly different from anyone else in the room! Because this is a new group, some people have to travel quite a distance to get to the meetings - there was someone there on Saturday who had travelled from Portsmouth, for example. It makes me realise, once more, how lucky I am to be in the South East of England and near both East Grinstead and the Royal Marsden hospitals. Imagine if I lived in Glasgow and couldn't get along to any support group - I think I would feel just that bit more isolated.

Anyway, back to the meeting. This was the third meeting of the support group and the second Neil and I had attended. At the previous one, in September, I had been fairly quiet (unlike me, I know!) as I wanted to get a feel for the meeting first. However, this time it felt a lot more relaxed to me and I even led a discussion session, having discussed with my speech therapist, who very kindly, along with a colleague, gives up a big chunk of her Saturday to enable this support group to happen. I have to say, it felt good to be at the front of a group, leading a discussion and getting people to work in small groups and then give feedback - almost like being back at work! Perhaps it's because I didn't feel remotely self-conscious about how I looked, because everyone there had some degree of facial palsy.

We were trying to explore ways to make our newsletter and blog come to life a bit more and be useful sources of support and information for us, so we've now got a list of different things to investigate and experiment with. I've volunteered to become more involved with the blog and newsletter and also to take part in a brainstorming session to review the charity's website - what would we, the people whom the charity was set up to help, like to see on there? Because it will be a small group of people working on this, rather than the full support group, Neil and I offered to host this brainstorming session in our home - it's more comfortable and it "demedicalises" things by removing us from the hospital environment. It's also a good discipline to tidy up!

All in all, I felt it was a very useful meeting and of course, getting more involved makes me feel that I can be useful myself and give something back. One of the other members of the group lives quite nearby, so we plan to meet some time for a cup of tea and a chat.

On Saturday evening, Neil and I had been invited to a Burns' Supper at the home of some friends. Agnes, the hostess, is a fantastic cook and whenever we go to their house, she and Russell make us so welcome that the evening always flies by and before you know it, you are glancing at your watch and realise, with a shock, that it's nearly one in the morning! The evening lived up to expectations - the food was wonderful (and plentiful) and we all took turns reading some Burns' poetry. Russell's address to the haggis was superb - much better than my stumbling attempts to read some of Tam O'Shanter! Regardless of nationality (there was a mix of Scots, English and Welsh there), we all tackled some Burns and a great evening was had by all - and yes, when I glanced at my watch, it was nearly one in the morning!

Isn't it great to have a Christmas present in January? When the days feel endlessly dark, it's a long time till the next bank holiday, it's cold and all you want to do is make soup and eat stodge (okay, that last bit might be just me!).....I think January can be quite a depressing month. So, having had such a good Saturday, it was just fabulous to be going up to London with Neil to see the stage version of The Lion King. I loved the film and we had seen the mini version staged at Animal Kingdom in Floriday, but I had wanted to see the full stage version for a long time. Neil got tickets for us both as part of my Christmas present, so he and I set off to the matinee performance yesterday.

It more than lived up to expectations - I'm not sure I can find enough superlatives to describe it, to be honest! It was colourful, a real spectacle, brilliant costumes and sets, great singing and such a good story! Lots of humour (Rafiki, Timon and Pumbaa were superb!) and unexpected touches, like the animals coming down the aisles of the stalls so we could see them go past on their way to the stage. I have to confess that I was crying as soon as the show started, just because I had been looking forward for so long to being there (soppy sod or what!). We both loved the show and, because we had gone to the matinee performance, we had plenty time to find a restaurant afterwards and have a leisurely meal before returning home.

A good weekend, then! I've had a quieter day today, doing some domestic stuff and posting a parcel to Adam with all the clothes he forgot to take with him when he returned to uni last week. I'm off to the gym later with Amy as I have been a bit lax about exercise since my successful summit of Skiddaw last week - I can't rest on my laurels any longer!

No hospital appointments for a fortnight, when I will then have my PET CT scan, so I plan to use the next two weeks to get more paperwork sorted out and to catch up with people (three lunch dates this week - how will I ever find time to return to work?!). At least if I try to keep busy, it might stop me fretting about the scan - that's the plan, anyway!

Friday, 20 January 2012

Oh yes!

Quick update on my visit to hospital today.....

Appointment was for 11 o'clock, so I trundled up to the Reception desk at about quarter to 11, thinking it might be like last week, when I had barely sat down before I was summoned by the nurse. Sadly, this week was totally different. I sat down, started reading and then, after about half an hour, one of the receptionists announced over the PA system that my clinic was running approximately 45 minutes late. Well, we all know that what that really means is that it will be at least an hour after your appointment time before you are seen! I don't have a problem with this, because I always think that doctors should feel they can spend as much time with a patient as they need to, without worrying about keeping other patients waiting. I might be that patient who needs extra time with the doctor one day and I wouldn't like to think the doctor had to hurry through my consultation just in case other patients got....well, impatient!

The problem with waiting today was that I was a bit anxious about getting my scan results from last week, so waiting even just a tiny bit longer was making me a little antsy! I managed to text Neil a couple of times and he calmed me down, told me to get a cup of tea and to try to relax. I did my best to, with reasonable success.

I finally got called through at about quarter to one. First off, I have to be weighed to check I am not losing any more weight - I'm not. I seem to have stabilised, which is good. Then I was shown into the little consultation room to wait for the consultant. Luckily for my blood pressure, she was with me within a couple of minutes and obviously realised that I needed to be told the outcome of the scan very quickly, because as soon as we had said "hello" to each other, she said "Good news - the scan was clear" - phew! I know that the likelihood was that it would be, but it was great to have it confirmed officially and to let that nagging worry drain away. Next milestone is the PET CT scan on Monday 6th February, which will be reviewed at the MDT on Wednesday 8th and the results given to me on Friday 10th. This is the biggie - the one which would show up any microscopic nasty cells which might not be spotted in a CT scan, ultrasound or physical examination. Fingers, toes and eyes all crossed for that one!

Today was the farewell to the colleague from Tower Hamlets, whom I mentioned a couple of weeks ago. I wasn't able to go to it - and to be honest, I don't feel I knew him well enough to turn up and it might seem a bit macabre - but I had a quiet moment when I thought about him and his family and the new reality to which they are now adjusting.

The rest of the day passed off uneventfully, with a trip to Ikea (delayed from last week!) and a cup of tea and slice of millionaire shortbread to celebrate my news, in the company of my minister.

Life is precious and I really, really appreciate mine. Today's news just emphasised how much I want to live as healthily and long as possible (not that there was any doubt, but I'm sure you know what I mean!). Rubbing shoulders with your own mortality reinforces the desire for life and makes you realise just how much richness you have in your family and friends. I feel very blessed with the people I have in my life.

Tuesday, 17 January 2012

So there was this big mountain........

It's now four days since I last blogged about my great day out and then my not so great visit to hospital. Lots to report since then!

On Friday evening, Neil and I talked about what had happened at hospital that day and the reality that it's entirely possible that this nasty disease could make a return at some point. We needed to have a talk about it. I think I said before that it's the big elephant in the room, which we have been knowingly, casually, ignoring for some months. We acknowledged the elephant and what impact it might have...only in vague, tearful terms, but at least we did. I think it did us good to recognise the possibility, although we both obviously hope and pray that it remains a possibility, not a reality.

We had a big weekend planned, starting with a trip to Glasgow on Saturday to visit my mum, who had moved into her (permanent) care home three days before. She was diagnosed with dementia late last year and had been in hospital for a couple of months, so we wanted to see her in her new surroundings. It was the first time she would have seen me since my surgery and, given that the last time I saw her, she didn't recognise me (and that was before my face changed!), I was none too hopeful about her reaction. In the event, she was much better than I expected. She struggled with names (including my brother who died a couple of years ago, whom she looked after for about 13 years on her own and whom she used to talk about all the time, so that was an indication of how much she struggles with some aspects), but realised I had been ill and asked how I was and said, when we left her, that she hoped it all went well for me. Yes, it was a bit vague and non-specific, but at least I felt that she had some interest in my health. We had taken Adam with us, as we were dropping him off in Carlisle for his new uni term, so my mum got to see him too. I felt very relieved that she was better than I had expected her to be - less frail than I thought (although still very thin), but with a bit of a spark that I thought might have been missing. Put it this way, she has a healthy paranoia about being in residential care!

We had arranged to spend the night with a very dear running friend of mine, Karen, who lives about 40 minutes outside Glasgow and I had managed to arrange to call in on another very dear friend (known her for over 40 years!), Morag, who lives 20 minutes outside Glasgow and fortuitously en route to Karen's! There were four of us who were a really tight little group at school and Fiona, who lives in Newcastle, was also up in Glasgow at the weekend, so she arranged to call in at Mo's at the same time as we did, so a happy little reunion took place. Our fourth member, Lindsey, lives in Canada, so it was a bit short notice for her to get over! We had a good old blether (Adam, of course, was totally bored by our chatter until Mo got out some (very!) old photos of us from SU camp and school days, when he was able to scoff at our clothes and hairstyles. Truly, the 70s is the decade that taste forgot!). It was great for Neil to meet my old friends - he had met Fi once, but many years ago and both of them had pretty much forgotten about it and he had never met Mo.

After a few cups of tea and pieces of cake, we made our way to Karen's, where an equally warm welcome from Karen and her lovely girls Eleanor and Gwen awaited us. Another running friend was there too and we had a fantastic, relaxed evening, chatting over dinner and then relaxing next to a roaring log fire. We were pretty tired after such an early start, so it wasn't very long before Neil, Adam and I took ourselves off to bed. Neil, being a lovely, kind husband, had done all the driving so I could be fresh for seeing my mum and my friends. I know he realised that I was a bit apprehensive about seeing my mum and how she might react and also that I would have some low-level anxiety about seeing my friends with my new face, so he made it as easy as possible for me to be relaxed. I know my friends don't give a fig what I look like, but it's hard to banish the anxiety altogether. I think, in the end, that Mo, Fi, Karen and David thought I looked better than I had led them to expect!

Sunday now, and we set off from Karen's to drop Adam off in Carlisle, via a trip to Tesco to stock up his fridge and cupboards! All parents reading this will be familiar with this procedure, I'm sure.....It was easier, although still difficult, to say goodbye to Adam this time. In September, I was a bit of a tearful wreck, leaving my "baby" in a place so far from home, worrying about how he would settle in, whether he would make friends, whether he would work hard enough! Perhaps, also, there was an extra dimension to my tears because Adam had been through all the stages of my illness, from my finding the lumps in the first place, through the diagnosis, treatment, the very low points and the gradual, slow recovery. This time, it wasn't so bad, although of course the timing wasn't so great, given the slight upset at hospital on Friday - another of life's little ironies, eh? At least this time, I left him with people who are now friends (we were even allowed to meet his best mate, Kirsty!)and with enough food to last at least a fortnight.

Neil and I had decided to take advantage of being up in the north-west of England to spend a couple of days in the Lake District. He spent some evenings researching hotels and booked us into a fabulous hotel (the Ravenstone at Bassenthwaite, if anyone is looking for a good hotel for a walking holiday) for two nights. It was just perfect - wonderful views from our room, very friendly staff, great food, log fire in the bar and a coal fire in the lounge, the biggest selection of board, card and other games I have ever seen, snooker and pool tables...really, you needed a couple of weeks just to work through the games! We had planned to try and walk up Skiddaw, but I had reserved various rights; firstly, the right to say it might be too much, second, the right to go as slowly as a snail and third, the right to grumble and whine every step of the way :-) Of course, Neil had no problem with any of these reserved rights but in the event, I didn't need to invoke any of them because (oh yes, dear reader!) I managed it! We did a small walk on Sunday, just down to Bassenthwaite lake and back, which took a couple of hours and then on Monday, after a huge breakfast, we set off to climb Ullack Pike and then Skiddaw. It was a gloriously sunny, wintry day, with no clouds in the sky and no rain or snow forecast....unusual for the Lakes in January, I think! On the exposed ridge, the wind funnelled through between the peaks and blimey, was it cold and strong! At one point, I had to crouch down because I genuinely thought I might be blown off the mountain....well, I have lost a lot of weight, you know ;-p In all seriousness, it was a mighty strong wind but once we started the ascent of Skiddaw, we were sheltered from the wind and it was much calmer (and almost warm under the sun at times, believe it or not).

I surprised Neil and myself, I think, with how well I coped with the climb. Okay, we weren't walking at a particularly brisk pace, but we weren't dawdling and we didn't hang about eating a packed lunch (although we did stop for tea (from a flask) and Toblerone (from Santa Claus)at a couple of points. I felt very pleased with myself when we got back to the hotel - I hadn't grumbled once, my legs didn't hurt, I still felt I had something in reserve at the end and time on my feet counts as Marathon training, as far as I am concerned.

We drove home today, after brief stops in Keswick and Ambleside, where I got a pair of walking shoes, rather than boots, which I had been wanting for some time. I also saw a lovely down-filled jacket reduced from £90 to £10 - sadly, they didn't have it in my size :-(

All in all, a lovely few days and much needed after the trials of Friday. I do think things are more on the up than the down, but I also know that the MDT meets tomorrow to review my scans from last week, so I will be a bit antsy until I have my appointment with the consultant on Friday and find out their expert view about what they show. I apologise to everyone in advance for any grumpiness, short temper or generally volatile behaviour over the next few days. If you could all cross your finger, pray to whatever God you believe in and generally send positive thoughts in my direction, that would be just perfect.

Thanks to everyone, as always, for support, comments and thoughts - and especially to Amy, Adam and (my rock) Neil for looking after me so well.

Friday, 13 January 2012

Great day out - then back to earth with a bump - or rather lump!

I posted on Facebook that I would blog about my Big Day Out yesterday so, as promised, here is the story of My Trip to London.

My friend from uni, Fin, had very generously invited me, along with two other uni friends, Gill and Ron, to go to a matinee performance of Ghost - the Musical and then for a Chinese meal. We arranged to meet in a pub near the theatre. I don't often go up to London for social events, although I have worked in London most of my working life, so I always feel a bit like the country mouse come to town when I go. I also hadn't been to London on my own since the summer, when I had to go to two hospital appointments in London. I've been up twice in the evenings for social events, both times with Neil, so this was going to be my first time using public transport late at night on my own. Even earlier this week, I balked at the thought and indeed, I cancelled going to a meeting in London on Monday early evening, largely because I still felt uneasy at the thought of being on a train with loads of people. However, my trip to Bluewater gave my confidence a boost and I felt perfectly able to cope.

The journey to London was fine; I negotiated the train and tube and found the pub without too much difficulty, despite my inability to look at a map and figure out which way I need to go. I was the first to get to the pub, although Fin arrived about two minutes after I did! Ron arrived later and Gill couldn't get away from work until a bit later, so Fin and I had the chance for a wee catch-up. His lovely wife Anne, who was also at uni with us, died of cancer just over nine years ago, so he is sadly familiar with what it feels like to be riding the cancer train and we shared some experiences and feelings. I found it really helpful to talk to someone who's been there and knows about the uncertainties and worries.

However, the day was about old friends getting together for a good blether, so we didn't dwell on it and didn't get maudlin. This was a day for reminiscing and enjoying each others' company. It was strange (in an amazingly happy way) how the years rolled away and suddenly it felt as if we were all 19 again, learning how to be independent, form our own opinions rather than reflect our parents', making mistakes and having fun. Isn't it great when that happens and you pick up from where you left off so easily?

We met Gill at the theatre and Fin arranged for us to have a glass of champagne before the start of the performance - I love the way you can get plastic champagne flutes now and can take your drink into the auditorium, because just as we sat down to sip our drink, the five minute bell rang! In we trotted and took our seats - and what great seats they were! We had a perfect view of the stage, close enough to see everything but without having to crane our necks upwards. The show was amazing - if you've seen the film Ghost, you will know the story - and the musical is faithful to the story but obviously injects a lot of song into it. And what songs! - the music is superb and the singing was excellent. The two young leads were completely convincing (the male lead, Richard Fleeshman, had played Craig Harris, Rosie's goth boyfriend, when he was but a lad) and the Oda Mae Brown/Rita Miller character was brilliant. The special effects were incredible - the sets changed quickly, taking you from the loft apartment to a busy banking office, to the New York subway, to a city street, with the most effective lighting. All in all, a wonderful production which had me laughing one minute and in tears the next. There was a standing ovation for the leads, who were doing their last two London performances yesterday before transferring to Broadway.

Fin had arranged for champagne during the interval (we had to use plastic flutes again as we didn't finish it before the second half bell rang and we were determined not to leave any in the bottle!) and, as if all this weren't enough, he also arranged for us to go backstage after the performance and meet the cast leads. They were so friendly and happy to chat to us for a few minutes, even though they had an evening performance to prepare for.

This day out was turning out to be pretty amazing! We adjourned to the Criterion restaurant where we had a bottle of Bollinger - I felt like Patsy from AbFab but without the beehive and drug habit. Oh, and minus about eight inches in height! So actually, not that much like her, now I come to think of it! The Criterion was an oasis of calm in the midst of the bustle of London - in fact, it reminded me of being in a place like Cafe Florian in Venice, or a traditional coffee-house in Salzburg. Then off to the Chinese restaurant for a veritable feast. I stuffed my little belly to the brim - and yes, there was more champagne!

We had a great catch-up: lots of "whatever happened to....?" and a bit of Google searching to try and find out! With all four of us being Scottish, we had a good old grumble about declining standards of spelling and grammar - oh yes, our inner pedants were proudly outed!

Last trains beckoned and we had to bring the evening to a close and make our ways home. Arm in arm, we trotted down to Embankment station and said our farewells (Ron and Gill are married, so set off together on their long journey home, Fin lives within walking distance of Embankment and I had to get to Victoria and catch my train)with promises to meet up again soon. My lovely husband Neil came and met me at the station so I didn't have to walk up the road on my own in the dark (I've done it loads of times on my own before but there's still a bit of self-confidence I need to refind).

Our friend Fin literally treated us to the whole day and wouldn't let any of us even buy a drink - thank you, Fin, for your wonderful kindness and generosity. Being with old friends from those formative and special years was a real privilege and we've decided we need to start putting dates in the diary for us to meet again so we actually meet on a more regular basis.

After such a positive two days, I woke up this morning feeling pretty good. I had my usual monthly check-up at the Marsden and was anticipating that everything would be fine, as it has been the past several visits. When I was making the appointment in December, the receptionist asked if I was okay with it being Friday the 13th... "Yes, of course," I replied. Cue a hollow laugh.....

First off, Adam was supposed to come with me and then we were going to do a bit of shopping. He had gone down to his friend's place in Brighton yesterday and was driving back this morning in time to come with me to the Marsden. At half nine, he called to say he was on the motorway with a flat tyre and no jack! Luckily he is in the AA and was able to get them to sort him out, but he wasn't back in time to go with me to hospital so I had to go on my own - which, under normal circumstances, would have been fine. I was planning on going to Ikea afterwards to check out some wardrobes for Amy's room, so my day was pretty much planned.

I saw my consultant, told him I was feeling good, was back at the gym, planning on doing the London marathon, etc etc. I wanted him to check that there wasn't any inflammation hanging around that might compromise my PET CT scan next month, so he had a look inside my mouth, under my tongue, down my throat etc., and pronounced that everything was looking good. Then he did an external physical examination and pushed and prodded my neck. Then he pushed and prodded a bit more...and a bit more.....and then said "Hmmm, there's a lymph node there that feels a bit soft. I think we'll get that looked at so let's just arrange an ultrasound scan, today if we can. No need to worry." How often have I heard those words since I first noticed those lumps on my jaw last March? Far too often. And do I believe them? Actually, no. Experience teaches me that there is usually every reason to worry.

I was slotted in as an urgent ultrasound, which meant waiting for a couple of hours until the radiologist had an opportunity to see me in between patients with booked appointments. I really appreciate the doctor making the time available to see me (being a polite little person, I did tell him this). The consultant had said that the radiologist would take a tissue sample if he thought there was anything to be concerned about and that, in any case, the ultrasound would be discussed at the MDT next Wednesday, so I had to make an appointment to go back next week, which feels like - and indeed, is - a backward step, going back to weekly check-ups.

You can imagine the state of nervousness and anxiety as I lay on the bed, watching the radiologist peering intently at the screen as he moved the probe over my neck. "Turn your head this way, please." "Now this way." "Now this way again, please". Just as I was waiting for his next words to be "I need to take a fine needle aspiration now", he said the sweetest words I could have heard - "I can't see any mass, so no need to take a sample. It all looks fine to me." You can imagine the sense of relief I felt.

I left the hospital and phoned Neil as I walked to the car park to let him know what had gone on and that's when it hit me. I got a bit weepy, largely out of relief but also the sad recognition that this is what it's going to be like from now on...any lump, unexpected bump or ache and it will have to be checked out, with that constant feeling of dread that it's going to turn out to be bad news. There's no real escape from this disease - it may recede to the back of my mind, but it's always there, worming its way to the front from time to time.

I think that it hit me harder today because the past couple of days have been so positive and forward-looking. However, I coped with being at the hospital on my own, waiting for the scan on my own, hearing the doctor's opinion on my own, so I'm stronger than I maybe thought I was. I'm not sure I would have coped with it a month or two ago without getting worked up and upset immediately the consultant spotted something a bit unusual.

So, back to the reality of living with a cancer dx. There it is, whispering away in its nasty, evil, sibilant way.... "Just when you think it's all going your way, just remember I'm sitting here in the background and I might just come back for another little visit." Well, nasty cancer, you can just stay away from me because I don't want you back!

Wednesday, 11 January 2012

Kitchen p*rn, spotty jugs and wipe-clean tablecloth....and a thank you to a mystery woman

...goodness knows what weirdos will happen on my blog if they search on some of the words used in the title!!

Today I went to Bluewater with my good friend Sally. We had tried to go before Christmas but for one reason and another we couldn't both be free at the same time, so this was our delayed trip! We had gone specifically to go to Lakeland (hence kitchen p*rn!) - one of my favourite shops, where I can always find things to buy that I never knew I needed - to buy heated clothes airers. Yes, it's official, I am a middle-aged Hausfrau. I get excited about things like heated clothes airers, wipes to clean the seal of my washing machine and oven cleaner. Defriend me now if this offends you :-) Ironically, given that our principal reason for going to Bluewater was to get these airers, there were none in stock. I compensated for the disappointment by buying some stuff (washing machine seal clean wipes, oven cleaner!) and we then spent a happy couple of hours shopping. To be more accurate, I shopped and Sally accompanied me!

I'd been looking to buy a wipe-clean cloth for the kitchen table for some time, so we popped into John Lewis and I got a fabulous light green and white spotty one which, cunningly, had a light green and white check pattern on the other side. Great, a reversible tablecloth - it felt like a "Buy One, Get One Free" offer! A trip to Laura Ashly produced a spotty jug which matched the tablecloth perfectly, so my kitchen now looks rather pretty and countrified. I got a few other bits and pieces - some stuff for my mum, who moves into her care home today and whom we are visiting at the weekend, some bits and pieces for Amy's bedroom, which we are decorating at the moment and -ta dah! - a lovely bright red cardigan for me. I felt much more like my old shopping self, buying an item of clothing instead of house stuff!

Thanks to a voucher offer Sally had downloaded to her phone, we did take advantage of a BOGOF deal, at Carluccio's restaurant, where we had a very tasty and filling lunch and a good chat. We have decided that we are definitely suited to the "Ladies who Lunch" lifestyle! It was great just to be the two of us - usually there are lots of people around, children, husbands, friends etc so the chance to be just on our own was welcome as we had quite a lot to catch up on! Last time I went to Bluewater, in the summer, I was on my own and while I enjoyed being there and doing something normal, it is good to have company.

While we were wandering from one shop to another, I noticed a couple walking towards us, a man and a woman. The woman was talking animatedly to the man, a big smile on her face, using her hands expressively, and as she got closer I realised she had no nose. And there she was, walking in a busy retail outlet, not looking at all self-conscious or hiding her face. Of course, inside she could have been quaking with nerves, but outwardly - no sign. Interestingly, I just registered the lack of nose after thinking how nice a smile she had and when they had gone past, I turned to Sally and said how nice it was to see someone else with a facial disfigurement just getting on with things to which Sally said she had scarcely even noticed that her face was different and that she doesn't notice anything different about my face when she sees me because she's used to how I look. That's how Neil and the children are too, and other friends who see me regularly - they've grown accustomed to my face (cue for a song....)In fact, Neil, Amy and Adam have been telling me for ages that they don't notice my face is any different to how it used to be.

To that woman in Bluewater today, I say "Thank you" - for sharing your face with me, for helping me see that actually, people don't necessarily focus on the flaw (real or perceived) but see the whole person and that there's no reason to feel I can't do ordinary, everyday activities because of how I look. I salute you, lovely blonde lady with the huge grin.

That's why I wanted to blog today. My trip to Bluewater was a success on so many levels. I got to spend time with my friend Sally. I had a boost to my confidence from seeing the woman I mentioned. Oh, and I bought some lovely stuff, so I am confident that psychological Keynesianism (or spending your way out of a depression!)does work :-)

And finally, for those of you worried about the lack of heated clothes airer - I ordered it online (as did Sally).

Monday, 9 January 2012


I have been a busy little bee today, although you wouldn't think so if you were judging it solely on how tidy my house is!

I sorted out a whole load of paperwork for my accountant, which included downloading loads of invoices and bank statements etc. I filled in my pain questionnaire for a research study I am taking part in, updated my cv and drafted some covering letters, submitted my invoice for a little piece of work I did before Christmas, emailed some ideas for our facial palsy support group, made some enquiries about possible project work, did the food shopping and made a chicken and chorizo casserole. Phew! And in between doing all those things, I saved the world :-)

It did me good to do lots of tasks today, some of them things I had been putting off for a while. apart from feeling I have achieved something, it augurs well for my returning to work, if I can concentrate for most of the day on working through stuff. I do feel almost ready to return, not full-time but on the same basis I used to work, two or three days a week. The big question is - will there be any work for me? Public sector finances are even more tightly squeezed than when I stopped working last year, so I may be living the life of leisure for a while yet!

Being busy also helped me forget about the feelings of sadness and anxiety I talked about in my last blog post. In fact, I had a little cry today because I just felt I needed to get some of the sadness out. I felt better afterwards (it was a fairly genteel sobbing, not a snivelling snotfest) I went to an exercise class this evening, which also helped. Consequently, I feel much better this evening than I have the past few nights.

Onwards and upwards, my friends! I am sitting on the sofa opposite my lovely husband, who is sorting out some walks for us to do this weekend when we visit the Lakes. Life is feeling pretty good.

Sunday, 8 January 2012

Another good guy gone.....

One of the (many) challenging things I've discovered since my dx is that it is dangerous to compare my own case with others who have similar cancers. Every patient is different - treatments can be more or less effective, the disease itself can be more or less aggressive, treatment plans can vary, side-effects might be different: the list is long. However, it is tempting....when someone with a similar cancer has survived for more than five years and is still doing well, it's something positive to focus on and I think that I could be that person. Then someone has a less positive outcome and I start worrying that I will follow their path. It can lead to a kind of madness and an obsession with symptoms, imagining pains and lumps where none exist. I try to resist playing this "Compare and Contrast" game and generally I succeed.

This past few days, however, I've found myself getting a bit anxious and feeling low because a former colleague, who had head and neck cancer diagnosed almost two years ago, was in remission since early last year but in October discovered that the cancer had returned and was now in his liver, lungs and spleen. I only found out early last week because a mutual friend posted a message on Facebook that alerted me and I visited his blog, which he had stopped updating once he was in remission but started using again one his new dx was confirmed. Sadly, he died in the early hours of Friday morning. He was only a few months older than I am. I feel sad for his family, sad that he wasn't able to enjoy more years of what seems to have been a happy and fulfilling life and, frankly, sad for me, because having known and worked with him, I felt more connected to his illness and progress and it just makes me fearful for myself.

I know, rationally, that my case is different. My cancer is in a different part of my head and neck, my treatment plan was different, he had a lot of very unpleasant side-effects that required more surgery and left him with great difficulty swallowing and speaking - so there are a lot of things that are not the same. But rationality doesn't always work, does it? Sometimes you just feel things. And I'm afraid that what I feel is a niggling worry, a pit of the stomach fear.

Recognising that I was feeling low, I took myself off to the gym today to get some endorphins going. I would say this resulted in limited success. I still feel low level anxiety and worry but I am trying to let my rational side have more influence. The way I am feeling is, I know, perfectly normal and to be expected.

On the plus side, we had a very nice meal out last night at the home of two local friends of ours. There were six of us altogether and it was a lovely evening: good food, good company, lots of laughter. Still no taste for alcohol, though! And then this morning, I discovered a pair of brand new trainers that I had forgotten I had, so I had that hugely enjoyable sniffing of the new shoes moment. For anyone who hasn't experienced this, get yourself a new pair of trainers and inhale deeply - bliss! I gave them an inaugural outing to the gym, but they are far too clean and white for my liking, so I need to take them on a muddy run very soon. It's a badge of honour to have mucky trainers, in my book!

Thursday, 5 January 2012

And a shimmy and a kick and a wiggle and a shake...

..can you guess I've been to Zumba? As part of my cross-training/get marathon fit/stay healthy regime, I have been doing a few classes at the gym this week. Yesterday I did a Legs, Bums and Tums class with Amy, preceded by 10 minutes on the treadmill (longest continuous spell of running for me in about a year, I think!) and then today I did an aerobics class, came home, sat down and almost immediately left the house again to go to Zumba with Amy. I love Zumba - the music is really uplifting and I always leave the class feeling buoyant and positive. Amy and I had a good giggle watching each other try to shimmy - when I move my shoulders, my bottom wobbles! What's that all about, then?

Seriously, I do need to make sure that I get enough exercise to stop me being at risk of sinking back into depression mode, but not so much that I overdo it for my stage of convalescence. The trouble is that exercise makes me feel so good that sometimes I just want to do more of it, but I am trying to be sensible. I am going to the gym tomorrow morning and that will be all the exercise I will do tomorrow. I haven't planned the weekend's exercise yet, but that may involve a small run outdoors.

I've been thinking for a wee while whether I should link my blog to my Facebook account. Up till now,my blog has been pretty much invitation only or word-of-mouth amongst friends - this stems from my almost paranoid fear that Amy might find out what was going on from a well-meaning comment on Facebook before we had had a chance to tell her what was going on. That's no longer an issue). I know that it's only visible to people on my friends list, but let's be honest, most of us have people on our friends list who aren't really friends, just people we "know". My worry was that by making it known to a wider audience, my family (who are mentioned a lot in  my blog) might be uncomfortable with other people knowing so much about our family life and challenges, that there might be hurtful or inappropriate comments left on the blog, or that it would feel, for me, as if I had put too much of myself and my feelings out there for (not quite the whole!) world to read. I thought long and hard about it and talked it through with Neil, Amy and Adam and decided that yes, I would link it to Facebook - so that was one of today's tasks! I'm glad I did it and feel almost a sense of relief that I'm not "hiding" it any more.

I have had several good days this week - my cold is finally showing signs of going, I'm enjoying my exercise and my energy levels are good, as is my appetite. I've done some driving, which gets more relaxed the more I do it, after my almost beginner-like nervousness when I first started driving again late last year. It's good to have my own car back after losing it to Amy for several months!

As always, thanks to Neil, Amy and Adam for being who they are. And to my friends, for being who they are too.

Wednesday, 4 January 2012

Eye say, Eye say, Eye say......

Avid readers and those with good memories may recall that at the time of my original surgery, my left eye was sewn to make the exposed cornea smaller. In technical terms, this is a tarsorrhaphy - and yes, I did check the spelling as a good pedant should! I am becoming more familiar than I expected with various medical definitions....

Avid readers may also recall that having two eyes so different in size and shape has made me very self-conscious about how I look, especially when the rest of the left side of my face is affected by facial palsy. It has meant that wearing make-up, for example, is virtually impossible and, in fact, I have only done it once when Neil and I were at a posh dinner in London. I know that's a pretty trivial side-effect, but it feels like one more thing that is different from how I was before and another step away from normality. I know there are much bigger things, both in terms of effect and complexity, which need to be done to my face but for some reason, having differently-sized eyes has been a pretty major issue for me. I have said all along that having my eye reopened would make a huge difference to how I perceive my face.

When we saw the plastic surgeon in October, I asked him about whether there was any chance I might have my eye reopened and he referred me to the surgeon who performed the original tarsorrphaphy (there she goes, showing off again!) and we saw him this morning. After an eye test and various measurements being taken, we had to wait to see one of his junior consultants, who asked me to do lots of blinking, looking up, looking down, put some stain in my eyes, tested the sensitivity of my cornea (apparently I am quite insensitive in both eyes) and then said she thought it would be possible but wanted the surgeon to have a look. We then saw him (lovely man) and he was less positive about my blinking reflex but said that he would be very happy to reopen my eye and to improve the blinking, he will insert a very small gold weight into my eyelid. It won't be visible when you look at me, but I will feel it as a slight weight on my lid. This is the best news I could have been given. I know that my eye will not be exactly the same as my right eye but it will be considerably more like it than it is now and it will make me feel that there's some progress being made  in my quest to look more like the person I used to be.

The operation won't take place for another four or five months - he said he could have reopened my eye today under local anaesthetic and then called me back for another operation to insert the weight but I said I'd rather wait and have them both done at the same time. Although this is a medical trauma I am choosing to put myself through - and, let's be frank, it's entirely for vanity as there is no medical reason for me to have this done - I do want to minimise the medical intervention so it makes sense to wait and do it all at once.

As this is purely for vanity, rather than medical reasons, does this make me the same as someone who has cosmetic procedures done to stave off ageing, or to have gravity-defying boobs? I have always been quite scornful of those people, thinking that medical resources should be devoted to helping sick people, not pandering to someone's self-image and yet here I am, asking for something to be done to make me look better. Am I just the same as the woman wanting cheek implants to look younger, or lip-fillers, or unfeasibly pneumatic breasts? I like to think I'm not but when you look at the facts, am I really that different? I don't need this done. I want it done. It won't make me better, but it will make me feel better. It will help with my self-image and might make it easier to be seen in public places, but it won't cure me.

Am I going to go ahead with this, despite all these questions? You bet I am!!

Monday, 2 January 2012

Once around the block...

Today I ran around the block. Yes, you read it here first (unless you've been on Facebook this afternoon, that is!). I haven't run outside for over 9 months and have done just a little running on the treadmill at the gym, but it was such a lovely morning, bright and sunny, that it seemed almost criminal not to be outside and exercising in the great outdoors.

I have to say, it felt bloody lovely! Nothing can compare with running outside, breathing in fresh air, hearing and feeling my feet hit the ground, hearing outdoor sounds rather than music pumped through the gym sound system.....fantastic. Okay, I only ran around the block and just happened to finish at Caffe Nero, where Neil and his cycling mates were having their post-mudfest coffees so I could partake of a hot drink, but the actual running was longer than I've managed at the gym and, while I was slow and wouldn't have been able to do much more, it didn't feel like as much of a strain as I feared it would.

And so - that's the start of my marathon training! Great oaks from mighty acorns grow and from this inauspicious start of once round the block I will get to 26.2 miles in April. There will be a lot of cross-training: gym, zumba, exercise classes, walking, because I know I have to build up my stamina slowly and my mileage even more slowly!  But I have started and that's the important thing.

Now I just need to shake off this nasty cough and cold I have developed over the past week and everything will be tickety-boo :-)