How has your summer been? This is mine....

Over a month since my last post - it's not because nothing of note has happened, but more because I just keep forgetting to come on here and write! I have noticed that my memory has been worse since my radiotherapy last year, I suspect because some of my brain cells might have got fried (well, that's my excuse and I'm sticking to it....). I've also noticed that, since I'm not having to go to work during the day and therefore have plenty of time to do things, I have become very time-inefficient: what I used to be able to do in an hour or two at the end of a working day now takes me about five or six hours. I suppose that because I have plenty of time on my hands, my "tasks" have expanded to fill the time available (is that Parkinson's Law? where work expands to fill the time available?).

What has been happening since I last posted? I shall do a list - not necessarily in chronological order:

• we collected Adam from university and took advantage of being in the Lake District to travel up to Glasgow and see my mum. She was in hospital following a fall at her care home and quite confused when we first saw her, but she improved over the weekend. Her memory for the far past is good but she isn't always aware of who we are, or that we are grown-up rather than babies. She's now back at her care home. We will see her again in September when we return Adam to uni;
• Neil and I went to see Shrek - the Musical on Father's Day. Brilliant fun! Plenty for adults as well as children;
• I met up with two other women who have Facial Palsy. We all "know" each other through a Facebook group set up for people affected by FP and, as one of them was spending a few days in London en route from America to Transylvania (no, really!), and the other two of us were in the South East, we met up in London and wandered around the National Gallery before having lunch. It was good to be with other people affected by FP, rather than being the only one - safety in numbers! ;
• I'm still volunteering at Orpheus every week and loving it. We had a "Come Dine with Orpheus" day, when the students were allocated a country and had to plan a menu, write and price a shopping list, shop, prepare, cook and serve - we all ate together and there was a judging panel. The students loved it (and so did the staff and volunteers!). Term ends this week, so tomorrow is my last day with the students till September. I helped at the Open Day on Saturday, which required me to do lots of baking (photos on Facebook last week). Great day - I was able to watch some performances by the students, including a Street Dance show, and then took part in a dance workshop. I believe I am now able to "bust some moves", as they say....I also was lucky enough to be invited to the Orpheus Gala at Trevereux Manor, where I met Prince Edward (patron of the Orpheus Trust) and enjoyed some superb entertainment by the students and a singing group called Cantabile;
• My professional institute (CIPFA) held its annual conference in Liverpool and as I am once more an elected Council member, I went along to this. I was quite anxious beforehand: I missed Conference last year for obvious reasons and was pretty apprehensive about seeing so many people in one place, some of whom would know my story but wouldn't know what effect it had had on my face, some of whom had seen me so knew what to expect and many who would have no idea who I am and why my face looks different. I was so anxious that I developed a sicky headache the day before I was due to travel and ended up being sick on the morning of my journey, but my apprehension was unnecessary. Everyone was lovely to me, interested in how I was and pleased that I was involved again. It's odd, how I still find it difficult to go to new places, even though I know that my face looks much better than it did. I think the psychological impact of facial palsy is perhaps more difficult to deal with than the physical impact;
• I ran the British 10k in London, to raise funds for Orpheus. I thought I would do it in about 1.15 or 1.20, but surprised myself by running it in 1.03.48 - not bad, given I had done no running for three weeks, no gym for two weeks and had stuffed my little face while in Liverpool!;

Those are the edited highlights of the past five weeks or so. I am struggling with the weather at the moment - I have always been affected by poor weather but normally I am okay in the summer because the weather is, well, summery! Not this year, though - I can feel my mood being pulled down every day the rain falls and the sky remains gunmetal grey. I am grumpy, snarky and not a nice person to be around - to my family, and particularly my lovely husband, I apologise. I find it so frustrating that last summer, when the weather was pretty decent, I wasn't well enough to enjoy it and had to stay indoors, out of the sun but this year, when I am well enough to potter around in the garden or go for long walks, the weather is totally rubbish. I could almost feel victimised......

I have some rather exciting news to share with you, but can't for another few weeks. It's not to do with weddings, births or moving house, so don't start thinking it's something like that! Just watch this space and all will be revealed.

Blogjam....

Facing up to things (see what I did there?!)

..or, learning to live with a new reality after a cancer diagnosis and treatment.

Friday, 9 March 2012

I really must discipline myself (no, I don't mean self-flagellation, in case your minds were working overtime...); I really must discipline myself to update this blog more regularly. If I don't do this, I forget what I've been doing and how I've felt and when I do get around to blogging, it's a veritable torrent of words. I've decided to set myself a challenge - I am going to blog every day for a week, to get myself into the habit of doing it and in the hope that it will become part of my daily routine.

So, since I last posted, what have I been up to? Quite a lot, actually <hasty consultation of calendar to remind myself>....I've been picking up some of the activities and interests I have distanced myself from over the last year. Now that I feel so much better and have more energy, I think it's time I started returning to things like volunteering for my professional institute and getting more involved in church and community activities. It's good practice for the return to the workplace (not that this is looking likely anytime soon, as there doesn't seem to be much work around in the public sector - I wonder why this might be? ;-/).

Over the past few weeks, I've been up to my institute HQ in London twice, to different meetings. It feels good to pick up these interests again, but interestingly I have noticed that I am developing more challenging behaviours - questioning things a lot more and trying to bring more realism to my view of what's going on. I wonder if this is a function of being ill - am I subconsciously thinking that I haven't got time, or inclination, to pussyfoot around things? I don't know, but it's quite an unexpected development. I'm also more challenging of other things, like bad manners, -isms, etc - that's not to say I tolerated these things before but I wasn't always in the habit of saying something out loud (probably this reflects badly on me and my cowardice), whereas now I feel much more gung-ho about things.

Of course, going to meetings in London means travelling on public transport. I still find it difficult and still anticipate that I am going to get stared at - not so much on the train from our local station into London, but on the underground and on the streets. I do need to be careful about this, because what I suspect happens is that I give off signals of being self-conscious and nervous and that will often attract attention because it's more obvious that I feel I have something to be nervous about. I need to remember that London is a great big melting-pot and that most commuters are very used to people who look/dress/sound a bit different and I am nothing that special to them! I went up to London on Monday and Tuesday of this week and, while neither of these trips meant a whole day in London, by the end of Tuesday afternoon I felt exhausted. I think this was partly because the worrying and nervousness about travelling make me tired and partly because, on both days, I was seeing people who hadn't seen me since before my surgery and who were interested in what had happened, so I was replaying some of the darkest and most difficult memories. I absolutely understand their interest in me, and deeply appreciate that they want to know what happened and how I am, but I need to remember that this will wear me out. At least talking about what's happened doesn't make me upset, which it used to. This is probably partly because of the distance in time since it all started and also because, finally, I do believe I am in remission, so it feels like a new phase for me.

I've done quite a bit of socialising - with former colleagues from Tower Hamlets, with friends locally and with our neighbours, whose daughter (the doctor who stepped into the role of personal physician when my wound got infected!) was visiting with her very cute and eminently cuddle-able baby boy. I'm able to eat normally, have one glass of fizzy (lasting about three hours) and stay reasonably alert until about 11 pm, so at least I can feel that I am behaving less like a hermit!

I've also been doing a fair amount of exercise - Pilates, Zumba, aerobics, cardio-boxing (hilarious) and gym, with a bit of outdoor running thrown in too. I know I won't be running that much of the London Marathon, but I am working on being able to run bits of it and to build up the stamina to get round. I am less worried about the stamina now I have got several weeks of regular cv exercise under my belt. The Pilates is interesting, as the first class I went to left me feeling kind of "meh", but the second class somehow just clicked for me and I realised how beneficial a different kind of exercise might be for me.

My life sounds really boring, doesn't it? In reality, it feels anything but - it's a real novelty for me, after the past 9 months of feeling, for the most part, absolutely dreadful, both physically and mentally, to be feeling energetic, positive, healthy and interested in things that aren't connected with cancer or facial palsy. For so long, my outlook has been more of an inlook - I couldn't see outside what was happening to me and couldn't look outwards at the wider world around me. It's incredibly refreshing to be able to take part in community activities (like our Fairtrade Big Brew this afternoon - banana cake cooling on the kitchen counter as I type!) and to meet up with friends somewhere other than in my house. I can feel 'safe' in other places now.

I still have bad moments - had one the other day, when I just felt really despondent by my face and almost on the verge of disgusted at how rubbish I look. Sometimes I hate the thought that my poor family has to look at this lopsided face all the time - at least I only see it when I look in the mirror. My family and friends reassure me that it's not nearly as bad as I think it is, but I know what I think of it when I see it in the mirror. No amount of clever hair-styling or accessorising will disguise it. On good days, I can brazen it out. On bad days, I feel as if I am the most conspicuous thing in the world and that everyone must be looking at me and wondering what on earth has happened to make me look like this. That makes me more upset than the oncology side, to be honest, largely because the cancer seems to be more distant, in the past, whereas my face is very much here, now and into the future.

And then I think - isn't it better to have a lopsided face than to have my old face but a very limited life? Well, yes, of course it is. My rational mind tells me that. It's this irrational mind that chips away at me from time to time. It undermines my self-confidence in so many areas: driving, walking into busy places, public transport - just ordinary, everyday social situations become daunting opportunites for feeling socially inadequate.  I still do these things, but sometimes, if  I'm having a bad day, it's exhausting. I am lucky that usually I have good days, rather than bad, and sometimes I even find myself talking to people for the first time and not even thinking that I need to explain my appearance to them - that's good, because it means that I am feeling more comfortable, more accepting of what I look like.

 

I'm just tired of being tired, tired of feeling different (and not in a good way) and so weary at the thought of months or years before my face returns to anything remotely approaching symmetrical.  That's the time I need to go for a run or to do some exercise to make these demons go away. Thank goodness it works!

 

I shall end this post on a positive note - I've had a lovely day today, baking, drinking tea with friends, talking to people that I think might become friends, arranging to go for a walk on Monday - I even fulfilled my role as Amy's PA, taking my little list of chores with me into Oxted and ticking every single one off! Why do I even need to think about going back to work? Looking after her is a full-time job in itself :-)

 

 

 

 

 

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Breaking news - I am getting better at this running malarkey :-) Those of you who know me through Runners' World, and others who know me well, will know that returning to running has been a really important part of my recovery, marking quite a milestone. Apart from the psychological benefits of exercise, it's the return to normal that it represents which is so meaningful. I've been doing a little running on the treadmill at the gym this week; managed 20 minutes on Wednesday morning and 30 minutes on Friday morning. Today, it was such a beautiful wintry morning, sunny and cold, that after church I decided to go for an outside plod - my first proper attempt at running, my first time out on my own (apart from running around the block a few weeks ago) any my first run outside.

There's a process to follow when going for a run - for me, anyway. I'm sure most runners just throw on their running gear, lace up their trainers and head off but oh no, not me. First there is the dilemma of what to wear - layering is key when it's cold, but I don't want to get too hot so I need to think about whether to wear a sleeveless top under a long-sleeved one, or a short-sleeved top under a long-sleeved one, or a short-sleeved one over a long-sleeved one, or a ....well, you get the picture! Then it's whether to wear calf-length leggings or full tracksuit bottoms. Then it's the trainers - should I wear my lovely new ones and spoil their pristine whiteness with some muddy badges of honour, or should I wear some older trainers which have been through mud, horse poo and puddles? (I told you it's a dilemma). In the end, I went for the sleeveless top, long-sleeved top, leggings and older trainers ensemble. The mandatory hi-viz gilet (anywhere else, this would be called a sleeveless jacket, but we're in Oxted, darling) on top, thumbs tucked through the thumbholes of my sleeves, hair screwed back into a tiny pony-tail and phone placed in pocket and off I went.

Well, what a beautiful day to be out running! Clean, clear air, bright sunshine, muddy fields and wildlife - just perfect. I did one of my old running routes; it's about four and a half miles and I ran all of it except for one tiny bit where I walked. I ran all the uphills, though, which I was very pleased with. I had to manoeuvre round a recalcitrant horse, which was firmly placed right by the stile between two fields. No way was it going to move - there was a couple out for a walk, just in front of me, who were trying to persuade this horse to move, but he was having none of it. Another couple on the other side of the stile were also trying to persuade it, but to no avail. I got fed up (impatient? me? Nooooo) with the slightly ineffectual hand-waving and "Here, boy"s that were going on, so eventually I just said I thought I could squeeze between the horse's head and the stile and hopped over. I wasn't going to let a horse stop me doing this blessed run, no way!

Now I know I can run outside, I can do more of it - I know I won't be able to do any long training runs for the VLM, but if I can get up to about 8 or 9 miles over the next 7 weeks (eek!), then at least I will feel I have the ability to run parts of the course, even if I walk most of it. And do you know what? there's no shame in that at all, despite what some running purists say. For me, the important thing is just getting to the end and proving that I have put the past horrendous 12 months to one side.

The rest of the week, since I last blogged, has been busy and good. I met with another friend on Wednesday for a catch-up and to talk about work and she gave me some very helpful advice about developing our new charity. Straight home from meeting her (in London) and met up with my friend Di in Oxted. She had an operation on her feet a few months ago and between her being immobile and me not being 100%, we hadn't had a chance to talk face-to-face for a while, so we had a grand old chat over tea/hot chocolate/latte in Caffe Nero.

On Thursday evening, I ventured back to the Elders' meeting at my church. The Elders basically work with the Minister to run the church, and are elected by church members. I hadn't been along to the monthly meetings since I got ill, so this is another step towards normality. I timed my return well, because it was our church secretary's birthday and there was cake! It did feel good to be back and getting involved, especially as we have had so much support from people there.

We had a guest for the weekend - my friend Dave, who lives in Derbyshire. It was just too difficult for me to entertain the idea of entertaining (!) overnight guests all through last summer so, because it's a long way to come just for a couple of hours, we arranged for him to visit now, when I am so much better. He came down on Friday and left on Saturday afternoon, so we had ample opportunity for a good catch-up, putting the world to rights, reflecting on being middle-aged gimmers, etc.! He even had the opportunity to come with Neil and me to a meeting of the Head and Neck Cancer Support Group at Medway Hospital (it moves around between Medway, Maidstone and East Grinstead Hospitals). You might remember that Neil and I went to our first meeting of this group in December and we won the quiz. Guess what? Yes, we won it again!I do like quizzes and my competitive streak comes out big-time. We won a bottle of red wine and then won a bottle of white in the raffle, so those two bottles have joined the serried ranks of bottles in the dining-room, none of which I can yet drink, since all wine still smells like vinegar to me!

I think that's me up-to-date now. It's been a good week, catching up with friends, and I deeply appreciate them making the effort to see me, especially when it involves travelling some distance. Neil, Amy and Adam are all fine - spoke to Adam on the  phone this afternoon, Amy has been working hard over the weekend looking after one of her favourite charges so his parents could go away overnight and is now in bed, shattered, and Neil has spent today working at ExCel, where his company was exhibiting. It's good to have him back home, relaxing on the sofa and perusing the Sunday papers. As for  me, once I finish this blog, I shall settle back on the sofa, cup of tea in hand, and luxuriate in the Sunday night televisual delight that is Call the Midwife - perfect easy, but well-made, viewing.

Toodle pip, y'all