Friday, 6 September 2013

The end of a blog...

Well, seven months or thereabouts since I last updated this and several people have asked if I am going to post again. A couple of people have even said they were worried that the lack of posting meant that news was less than good, so I apologise for causing any worry -I am still here, obviously!

The real reason I haven't posted in such a long time is that I feel I am in a different place now to where I was when I first set up the blog and for the 18 months or so afterwards. It helped me share news, it helped me offload and it helped me feel I was in control, even in a tiny way, of what was happening with me. And boy, did it help me! I think that at times it was the only thing that kept me on the right side of sanity and the calm side of anxiety. It was the only thing that let me share how I really felt, my deepest fears and worries, my love for my family and friends, and my deep, deep appreciation for our amazing NHS and all the health care professionals who have helped me through this. The comments left by friends helped me enormously ( even though they often made me cry!).

Where am I now? I have done some project work, so that's a definite return to normal. I am continuing to volunteer at the wonderful Orpheus Centre. I have been on holiday and am about to go and climb a blooming huge mountain in the French Alps. I have been going to the gym regularly, walking a lot and running a little. I am almost at the point where I think my voice may be reliable enough that I can return to the choir I had joined before I became ill. I am interested in what is going on around me. I am involved with Facial Palsy UK and embracing opportunities to publicise it in magazines or other media (obviously, this excludes the Daily Fail!!). I am busy, active and outward-looking. In recent days, I have been reading back on my blog and, while I recognise the scared, weak, angry and despairing woman who wrote those words, I can see how different I am now.

That doesn't mean that everything is wonderful every day - but, let's face it, is it like that for anyone? Really? I still get anxious before my oncology check-ups. I still worry about unexpected aches or anything slightly different in my anatomy. I still - even now - feel self-conscious about my face but I also know that I look so much better than when this all first happened or even than I looked a year ago. there any need for me to continue with this blog? I think not. I think it has served its purpose. It helped me hugely and, I hope, it has perhaps helped other people who might have read it. Quite a lot of people have said I should try and get it published and maybe that is something I should have a look at. Tell me, what do you all think? Should I try and publish this somehow? Would it help others at all? Or would it just be pure vanity publishing? :-D

I end this entry - and this blog - by saying THANK YOU to every one of you who took the time and trouble to read this, to comment, to think of me, to hold me in your thoughts or prayers, to think of my family when we were going through our worst time.

I am still here. I am living the life I want to live. Life is good.

Thursday, 21 February 2013

The coincidence of date....

Once again, I start my blog post by lamenting the fact that I have, once more, failed in my intention to post regularly. I do mean to post, but I seem to find that I run out of time and, combined with my rubbish memory, this results in me giving myself a (metaphorical) slap on the forehead and uttering a Homer Simpson-esque "Doh!" as I realise that I've failed in my blogging mission.

However, today I find myself in the lucky position of having time and having remembered - this may not be quite so lucky for you, having to read my meandering thoughts!

The coincidence of date - this came to mind on January 13th this year, when Neil, Adam and I were climbing Helvellyn in the Lake District. We had persuaded Adam to come out with us. He's not a natural climber and hasn't taken advantage of being on the edge of the beautiful Lake District by going out and exploring those glorious mountains, so we were really pleased we managed to get him out with us. Hopeful that our day would inspire him to get out and enjoy those hills, we set off in snow and with ice underfoot. For the first hour, he was not too happy but soon he began to enjoy it and was striding forth confidently. Unfortunately, on the way down, he strode forth a bit too confidently, slipped on some ice and landed heavily on his right arm. He had obviously done something to it, as he couldn't bend it and was quite clearly in some considerable pain, so after we got off the mountain, Adam drawing in his breath every time he stumbled on some rough ground and sometimes yelping with pain, we went straight to A & E at Carlisle Hospital. An x-ray later, we were told he might have a fracture at the elbow but it was hard to tell, so he was strapped up in a fetching blue velcro sling and told to return to the fracture clinic the next day. Luckily, it turned out not to be broken, just badly bruised!

January 13th? In 2012, I was having my monthly check-up at the Marsden, not yet officially in remission, and my consultant found a suspiciously soft gland. Long wait for an ultrasound scan and a week later I was told there was nothing wrong. Even so, it was enough to bring back those feelings of helplessness, uncertainty, fear and lack of control I had experienced for so much of 2011 for that week of waiting.

I think next January 13th, I shall remain indoors and encourage the rest of my family to do the same!!
I know, I know it's bad luck to be superstitious, but even so.....

In other news, I am still working two days a week in London - I have really enjoyed this piece of project work. It's been great to use my brain and to feel I am making a difference and I have really missed the office buzz, the conversations while waiting for the kettle to boil, the planning, decision making, thinking process and the opportunity to make suggestions. Two days a week feels about right to me - that, with my one day a week volunteering at the wonderful Orpheus Centre, is about all I have stamina for at the moment.

I find this lack of stamina quite disappointing. I had hoped that, by now, I would be much nearer the stamina levels I had before I got ill.  My friend, who herself is in remission from cancer, had said to me right from the start that it would take two years or thereabouts to get back to similar levels, but I did hope I would get there a bit early! I guess I have to remember that it's only 17 months since that gruelling treatment finished and only about a year since I started eating properly again, so all in all, perhaps I'm not doing too badly. I just miss that sense of having energy to spare, that need to do something to use up the spare energy. Instead, I find myself falling asleep on the train home from work, having almost hallucinations in that half-asleep-half-awake state so that I wonder if I am in some strange parallel universe. I don't remember getting this tired before being ill. Will it get better? I am trying to do the right things. I eat healthily, I exercise regularly, I sleep as much as I can, I drink lots of water - what more can I do?

Still, I'm alive, I'm doing so much more than even 6 months ago and I have my wonderful family and friends giving me constant support. I hope they feel I am giving something back to them too.

Monday, 21 January 2013

Hospital 1, hospital 2 and hospital 3...

As I write this, there's snow on the ground. Not a lot of snow, but enough to disrupt the transport system, it would seem. I don't remember my school closing because of snow when I was growing up (in a place much colder and with harsher winters than the South-East of England) - am I viewing the past through the rosy lenses of nostalgia? Were the summers endlessly long, always sunny and full of laughter? Maybe not, but perhaps my old school friends might remember if our school stayed open whatever the weather - I seem to recall the only days the school was closed was when the teachers went on strike!!

The snow started falling on Friday, as I was driving to the Marsden for my three-monthly check-up. Anxious enough about the check-up, as always, the anticipation of poor weather and difficult driving conditions heightened my nerves. The hospital car park was pretty empty and I did wonder if my check-up would go ahead or whether the doctors would have struggled to get in and I might be told to return another day - not a prospect I relished, as I still have to psyche myself up before the appointment and I would have to go through that process all over again. Luckily for me, however, the Head and Neck clinic doctors had managed to get in, although a lot of patients were phoning in to say they couldn't travel to hospital and the waiting room was much emptier than usual!

Of course, the important thing is how the check-up went, not whether the waiting room was empty. After the usual physical examination of  my head and neck and a look inside my mouth, the registrar pronounced that everything is fine - phew! All it means is that I remain in remission and there is no sign of the cancer returning in that area, but to be honest, that's as good as I can expect and hope for at this stage. It doesn't mean the medics are prepared to give me an all clear and state categorically that I am free of cancer, but it means that I am now a year in remission - pretty bloody good when I think of how I felt for most of 2011 and the thought of being alive in 2013 seemed like an impossible dream.  I can't stop cancer by willpower - if we could, how wonderful would that be? - but I can give myself the best possible chance of remaining healthy by taking responsibility for my health and eating sensibly, exercising, resting and avoiding risk factors. That doesn't mean I don't enjoy life - quite the reverse. It just means I am giving myself the best chance of being able to deal with any health problems that come my way.

The other side of my cancer coin is the facial palsy. On January 3rd, I went to the Queen Victoria Hospital in East Grinstead to have my gold weight (aka "eyelid bling") repositioned and my eyelid lift. I had to be there for half seven in the moring, which meant waking my lovely children in time to drive me there (neither of them was working that day, so they volunteered to take me - good children!). The surgeon came to talk to me before the operation and - to my pleasure - he said he thought I didn't need the gold weight any more and was going to remove it. Yay! He also thought I was a bit allergic to the gold (oh, I am so precious!) so it made sense to remove it. The important thing was whether I would be able to close my eye fully after the weight was removed and if I couldn't, then the next stage would be a platimun chain inserted into the eyelid - rising up the precious metal scale!

Now, nearly three weeks after the surgery, my eye looks much more like it used to BC. While it's not exactly as it was, and not exactly like my unaffected eye, it is far less noticeably different. This is progress. This helps me feel that I look more like everyone else and a bit more like I used to look. It also reminds me that it doesn't have to be all about oncology. A part of me also thinks that the NHS wouldn't be investing all this time and money in addressing my facial palsy if they thought that I was going to be ill again - perhaps this is naive, but it makes me feel better anyway :-) In a flurry of January medical appointment, I also had some Botox around my mouth, so I am all procedured-up.

Part of me feels a bit sad that my year has started with so many medical appointments, all of them necessary because of having had cancer. What a nasty, far-reaching disease it is! But another part of me rejoices that I am still here and enjoying life, that I have so many wonderful, supportive friends around me, that my family continues to be a constant joy to me and that the world contunues to turn. There's much to be thankful for. I am thankful.

Tuesday, 1 January 2013

And so it's 2013....

January 1st. A new month, a new year.

Last year, I wanted to draw a line under 2011 and forget - or at least try to forget - all the horrible experiences of the year. My little family and I had suffered much over the previous 8 months and I hoped that going to bed (before midnight) and waking up in a brand new year would mean we could leave all that nasty stuff behind us. Well, we all know that there were some ups and downs during 2012, don't we? - starting off with the scare in January (yes, I couldn't even manage one month without experiencing that sinking feeling when the consultant finds something that makes him worried and I trundle down the path of scan - wait -result). Thankfully, it was just a scare, but it did make me realise a bit more emphatically that I can't relax and assume that my body is now behaving properly.

February brought my PET CT scan and confirmation that I appear to be in remission - usual caveats applied, obviously! That took a while to sink in, as I was out of the habit of dealing with good news about my health....however, finally I accepted it and felt that I could move on to focus on dealing with the facial palsy resulting from my surgery.

Good friends helped greatly during the year - Fin, my old university friend, really helped my confidence by taking me on a star-studded extravaganza with a night at the Olivier Awards ceremony. Who doesn't love a chance to dress up in a posh frock and sip with people you are used to seeing on the television, stage or pages of a newspaper? My local and church friends, my running friends, my wonderful school friends, other friends - all gave unstintingly of their time, support and advice to help me adjust to being in remission and learning to be confident again, bit by bit, sometimes one step forward and two steps back. And of course - my little family. Neil, Amy and Adam continued to help me every day, in small and big ways. Whether it's been taking me to hospital for my eye surgery and further check-ups, coming shopping with me, planning and taking me on wonderful holidays or making me cups of tea - they've done it all, quietly and for no other reason than that they care for me and want me to be well and happy.

So I start 2013 feeling and looking much better than at this time last year. I have been out for a run this morning, as part of my plan to be as fit and healthy as I can be. When I think how scrawny and lacking in energy I was this time last year, I can see how much progress I've made. My face has improved and (hopefully) will continue to do so, although it's all very marginal. I have more eye surgery in two days' time, on the 3rd, when I shall have my eyelid bling repositioned and an eyelid lift, no less! I shall have a fortnight of looking as if I have gone several rounds with a prize heavyweight boxer, with bruising, swelling and those little strip stitches that fall off before they're supposed to. This will all be accompanied by some pain and discomfort, but hopefully by the time all the swelling has gone down, my eye won't look so heavy and it will be more like my right eye. Fingers crossed, anyway!

I've still got a raft of appointments in store. My next oncology check-up will be in just over a fortnight and I can feel the stirrings of anxiety as I get closer to the date. I try to tell myself that it's silly to feel like this and that there's no reason to think that the oncologist will find anything wrong, but there's still that nagging doubt and worry. I can sometimes go whole days without actually thinking about having had cancer, but I'm not yet at the stage where enough time and distance have passed that I can relax about it. It still hovers in the back of my mind, waiting to sneak up and catch me when I don't expect it. I'm sure this will get better but not quite yet.

And finally, on this day, I remember Anne, a friend from university who was married to another friend, Fin. A lovely, kind, intelligent, funny and beautiful girl, who died of cancer exactly 10 years ago today. I know Fin misses her every day. Spare a thought for her and for Fin.

Here's to 2013 - may it bring you all  you wish yourself.