Thursday, 29 March 2012

Agatha Christie, Jane Austen, Laurent Perrier and other famous names....

Why, you may ask, have I listed several well-known names as the title of this blog entry? Have patient, dear reader - all will become clear!

Let me start with Tuesday, when I completed my second volunteer stint at The Orpheus Centre. This week, I was working along with another volunteer and together we were helping one of the students complete their work experience log. You will understand that I have to be circumspect about giving names of students, so I shall refer to this student as S. S has cerebral palsy, with very little speech and spasticity in her arms and legs. She is a wheelchair user and her main method of communication is with the help of an ingenious little book which uses pictures and symbols to work from a main menu down to individual words, based on categories. S can nod or shake her head, or maybe blink, to show when we are at the right picture/symbol. By using this, we were able to help her complete assignment sheets about her work experience. While physically limited, S has an intelligence with shines through when she communicates and she can show very clearly that she understands and is interested in what is going on. Both the other volunteer and I felt that S had taught us something, as we learned to use her communication book and she was really patient with our fumbling attempts to move smoothly between the pages and reach the word she wanted! She had been skiing recently and we were looking at the photos of her on her adapted ski-chair - fantastic that it's now seen as natural that people with a disability can take part in things like skiing (and long overdue, too).

After our morning session, we ate lunch outside and some students joined us. While many of them go to their flats for lunch, some will eat in the cafeteria and there are day students who don't have accommodation to go to, so they will eat there too. I like chatting to the students and finding out more about them and what they think. They like finding out about us too, and of course, they're very interested by the fact that Amy works there and I am her mum! To be honest, I think that interests quite a few of the volunteers too :-). We had an interesting discussion about the responsibility of choosing a name for your child and whether you should choose something that is "different" or stick to tried and tested (names and/or spellings!). After lunch and self-directed study, when I helped the student I had been working with last week to complete more of her work experience record, we went to the Barn for some of the groups to demonstrate what they had been working on this term. It was a real insight into the variety of activities and the different talents and skills the students have. We learned about the enterprise work of one group, growing and selling vegetables and the different dishes they cooked with their own ingredients. We also heard some of the experiemental music group's work, which was a really diverse set of pieces, with really personal interpretations and insights. I come home from my time there with a lighter heart and a smile on my face - the students and staff are really inspirational (a word that is a bit over-used nowadays, but which I think is entirely appropriate in this instance).

Following Pilates, my lovely hairdresser came round to wash and dry my hair because yesterday (Wednesday) I went, along with T (hairdresser) and four of her friends, on T's "hen day". I can tell you that there wasn't an L plate, pretend veil or set of wings to be seen, because this hen and her chicks did something totally different to the usual "dress up, be silly, get trollied" outings that seem to be splashed all over our town centres (and tabloid papers) on a regular basis. Instead, we dressed up smartly and went to Bath on the Orient Express!! What an experience!! For sheer opulence, glamour, old-fashioned sophistication and luxurious surroundings, all wrapped up in superb service, this is second to none. All the staff, in pristine uniform and universally smiling, friendly and polite, could not do enough to make us feel special. We were shown to our seats, our jackets placed on the racks above us, heavy bags stowed away and our chairs pushed in as we sat down. Our "main man", Artur, introduced himself and said that whatever we needed, we only had to ask him - and then he proceeded to pour us each a Bellini (my kind of start to a train journey!). We were then served (silver service) a freshly-cooked and delicious brunch; smoked salmon and caviar, scrambled eggs with chives - the works. After plenty of tea and coffee, Danish pastries etc, we had the chance to view the train. It was well worth walking the length of the train and seeing the different styles of Pullman carriage - they are all named individually and have their own theme and history. Our carriage was Cygnus and there were swans incorporated into the decor, including a mosaic on the floor of the loo! One of my great heroes is Winston Churchill and I was particularly pleased that Cygnus was one of two carriages on our train which was part of his funeral train. That sounds like a strange and possibly morbid thing to be pleased about, but it made me feel some sort of connection with the great man. I get the same feeling living near his home at Chartwell - he must have walked down, or (more likely) been driven down the same roads that I use sometimes.

We arrived in Bath to blazing sunshine and were taken on a tour of the city by bus, including the famous Crescent, and then T had arranged for us to see a demonstration of glass-blowing, with the chance for us each to blow a glass bubble. That was a bit of a challenge for someone whose mouth only half-works, but I managed to create a fairly respectable, if weirdly shaped, bubble! T is the most sweetly generous and kind person and had arranged for us all to have an amount of money to spend in the glass work's gift shop, in addition to subsidising the cost of the day (I told you she was generous!) so we had fun choosing what to purchase. I chose two lovely turquoise-coloured wine goblets, as I thought they would be totally suited to sipping a pre- or post-prandial drink in the garden over the summer....assuming we have decent weather and that this current spell of warmth and sunshine isn't all we get this year!

After this, it was time to return to the station to catch the train home. That makes it sound like a daily commute, but it bears no resemblance to the London Bridge-Oxted service except for the fact that it runs on the same gauge track! A glass of champagne for each of us once we were seated set the standard for the journey and we enjoyed a superb four course meal, with wine and champagne (again, generously provided by T) and, as the wine flowed, so did the conversation! I really enjoyed meeting T's friends, all of whom I met for the first time yesterday, and I really did feel that I made some new friends and that we will keep in touch. That's a good feeling, isn't it? I like the thought that we can gather new friends as we go through life and that our friendship bank account can increase its balance. I've had a couple of debits to my friendship bank account over the last year, as I've mentioned in previous blogs, but a huge number of credits, so overall, I'm in a healthier fiscal friendship position than last March (if that makes any sense at all!).

The journey home just whizzed by - doesn't time always fly when you're enjoying yourself? - and all too soon we arrived back at Victoria and returned to normal, catching the train back to Oxted, where T's soon-to-be husband was waiting to drive us all home (he's lovely too!). I was full of my trip when I came home, babbling on to Neil and Amy, who were *enjoying* assembling a wardrobe for Amy's new bedroom....... I was very pleased that I managed to drink some champagne on the way home (I tried a sip of the very nice red wine, but it still tastes like vinegar to me), as it felt like I was just the same as everyone else, enjoying a little drink. And yes, I did enjoy it!

Today was the last meeting of my Lent group, which I have been hosting at our house for the past five weeks. It's a great little group, from across several of our local churches, so we have different denominations represented, and we have all been interested in, and respectful of, each other's views and beliefs. To close the session, we had decided to have a simple lunch together, so I made some soup and we had that with bread. Our theme today was Communion, so it seemed appropriate to "break bread" together. I have felt very blessed by my little Lent group and the trust we have all placed in each other to respect our thoughts and beliefs. They very kindly bought me and the Leader of the group a beautiful plant in a basket as a thank you (totally unnecessary, but very sweet of them) and the Leader had also bought me one, so I have beautiful colour in my sitting-room. I'd suggested that instead of people bringing things for lunch, I would provide it and people could make a contribution towards Fairtrade, which is supported by all the local churches, so we have a nice little sum to hand over to them.

I did have to take some photos today to renew my passport and I have to be honest and say that I found it difficult to look at them. I think that, like a lot of people, what I see in the mirror isn't necessarily how I look to other people and how I look in the mirror is definitely not what I see when I look at my photos! However, my passport expires soon (so does my MOT, but that doesn't need a photo!) and I do look different from my old passport photo, so have to have a new one done. If/when I end up having facial surgery and I look different again, I can always apply to change the photo at that point, but in the meantime, I have to go with how it is now. I suspect that if I had had to take these photos six, or even three, months ago, I would have been quite upset. Now I can almost shrug my shoulders and say "Well, that's how I look, so just accept it". I think that is progress.

Overall, my positive streak continues. I'm doing lots of lovely things and generally feel happy and strong. I think a lot of this is linked to this beautiful weather, so I'm not looking forward to the change this weekend...we are going to a family wedding on Saturday and, while I'm sure the bride and groom won't care about the weather, I can't help feeling that it's a bit disappointing that the temperature is going to drop by about 9 degrees and the gorgeous sunshine is going to be covered by cloud! Adam comes home from uni tomorrow, so my little family unit will be complete for a couple of weeks and I am really looking forward to that - and on that happy note, I shall sign off!

Monday, 26 March 2012

On make-up, confidence and Good Things....

Well, my positive streak continues, despite my thinking that the bubble was bound to burst last week - after all, I don't normally get a prolonged spell of nice things and good news, do I? Certainly not over the past 12 months!

Last Friday, I went to the Ideal Home Show with my friends Sally and Sue. I hadn't been there for a few years and we decided to make it a bit of a "girls' day out", even though we're no longer girls - ah, well! We had a really lovely, relaxed day - looked round a couple of the show homes, wandered round sampling cheese and sausages, plenty of tea breaks etc and a champagne break, since Sue had found out she's going to be a grandmother so we had a little celebration. Sadly, I was only able to have a couple of mouthfuls and then poured the rest into their glasses - I am a total lightweight when it comes to alcohol nowadays, even my beloved fizzy. It's not a problem, really, since I don't need alcohol to have a good time - and itmakes me a very cheap date!

Neil and I had friends coming round for dinner that evening, so we left the Show about half three and I was home by just after five o'clock. Luckily <taps nose> I had prepared pudding the previous evening and planned a cold starter, so it was a question of assembling the main course (Chicken Basque from the wonderful St Delia) and bunging it into the oven. I love it when you can just throw everything into one bit casserole dish and not have to faff about with vegetables, side dishes, etc, especially when time is a wee bit tight! The friends we had round were from Neil's cycling club, with their wives, and we had a lovely evening - good chat, the food seemed to go down well, lots of laughter. I was a wee bit tired after a day out (although we strolled around the IHS, it was still quite tiring for me because I was doing a lot of chatting, which always wears me out) but once we sat down at the table, Neil did all the fetching and carrying and our friends helped clear the table at the end of the evening, so I was able to sit and take it easy. It's nice to be entertaining people again - some small recompense for all the support I've had from friends over the past year.

Saturday dawned sunny and warm. Neil went out for a bike ride and I went out for a run on the Downs. I managed six miles (six slow miles!), which is the farthest I've run in over a year, so I was really happy with that - just glorious to be out there in the sunshine, running through the trees and enjoying the Spring air. The afternoon was spent doing laundry, cleaning windows (drawback of sunshine is that every smear or speck of dust is really magnified...) while Neil mowed the lawn and then started building the furniture for Amy's bedroom - ah yes! the joys of flatpack IKEA chests of drawers.....we know how to live!

Sunday brought church - I had signed up to do a reading, which I still find a bit challenging, since it involves standing at the front of the church with everyone looking at me, but I reminded myself that I was amongst friends and the important thing was to read. My looks are immaterial to this. It was fine and I had decided to download the text onto my iPad and use that to read from, instead of taking a Bible or printing out the text. This provided a source of interest to people afterwards, when we were having tea, as they wanted to have a look at it and see how it all worked. One of my good and lovely friends in the congregation came up to me afterwards and said that, when I was standing at the front, she could hardly see any difference between the two sides of my face, because there's been some good recovery - as always, I see the difference whereas other people see the similarities!

The rest of Sunday was more flatpack assembly (Neil), more cleaning and tidying (me) and then a relaxing evening, although I did have to review Adam's English essay (just for spelling and grammar, logical structure, etc) before he handed it in today. I also managed to spark a debate on Facebook because I got annoyed about the use of 's to make a plural, instead of just s - while most people seemed to support what I said, there was a certain level of dissent, which made for a lively discussion! I do think it's important to write and spell correctly and I just don't accept that it's somehow less important in informal communications like emails (dyslexia and vision problems excepted). I am also fed up with being told I am somehow a boring, anally-retentive member of the Grammar Gestapo for thinking that grammar and spelling are important. Hey ho, that's the way it goes, I guess - we will end up breeding a generation of people who think that the word "have" is spelt "of" and it becomes the (accepted) norm; meanwhile, people who think like I do just give up.....

And so to today - a little run this morning and then off to the Marsden this afternoon for my Look Good, Feel Better workshop. This is the charity arm of the cosmetic and beauty industry - they run regular workshops for women who are undergoing, or have been through, treatment for cancer. Many, of course, have lost their hair as a result of chemo and there are other side-effects which change the way a lot of women cancer patients feel about themselves and the way they look. For myself, I think you all know how much the facial palsy has affected my confidence in many ways - not just what I look like (I still get a shock when I look in the mirror, because I somehow don't expect to look like that), but my confidence in my ability to cope in social situations, being understood when I speak (especially on the phone), even driving - and as for feeling feminine, forget about it. It's a bit like the feeling you get when you're pregnant, that you stop being a woman (ironically, given that being pregnant is the best visible demonstration of being a woman) but become a "body" instead. I have felt a bit like that - I stopped being a woman but became a person who had this nasty little invader spreading through my body. Losing confidence in your looks (and let's be honest, I was never model material to begin with, but at least I could scrub up reasonably well) means that it's well nigh impossible to feel that you're making the best of yourself in social situations like parties, weddings, even just dinner parties. I haven't bothered with make-up because I've felt there's no point in it. I'd rather just skulk around and not draw attention to my face - admittedly, I have improved from my worst point, when my face was at its worst, but I still don't relish the thought of being the focus of people's attention and being looked at and I still feel uncomfortable having my photo taken. This self-confidence issue is one I do struggle with (I know I'm not alone in this and that it affects many people who haven't got facial palsy).

However, today, although I was the only person at the workshop who had facial palsy, I had a little bit of a breakthrough - yes, dear readers, I put on make-up and was pleased with the result. I can see the improvement, I got lots of advice about how to deal with the difference in the size of my eyes and I feel more able to try and make myself look a bit more presentable. This is not to say that I think I need to wear make-up every day to face the world, but it's nice to know that I can make more of myself when I want to. We are going to a family wedding on Saturday and I can put some slap on and know that it won't make me look worse - there's a reason why make-up is sometimes called "war paint" - it's another weapon I can use to arm myself before I face the public. I can also put my new-found knowledge into practice on Wednesday, when I have a very exciting day planned - a day trip to Bath on the Orient Express, no less! My hairdresser is getting married in Italy in July and for her "hen do", six of us are going to Bath, with a champagne breakfast on the way there and dinner on the return journey. It is going to be amazing - I love trains and especially the opulence and glamour of luxury trains like the Orient Express. My make-up workshop has been very timely!

Back to the Orpheus tomorrow for another day of volunteering - looking forward to it immensely! Amy is back from Marrakech (I went straight from the Marsden to pick her and her friend up from Gatwick) so I shall see her there, although she is going in later than I am as she has a local appointment first. Next time I am there (after the Easter break), I am going to get Amy to drive me there in the morning and then I can run home. It's about five miles cross-country, so it will be a good little bit of exercise.

So, to summarise, even if I don't Look Good (Look Acceptable, I think), I certainly Feel Better. My confidence has had a real boost today and my positive streak continues - let's hope it lasts!

Wednesday, 21 March 2012

Bounce, bounce, bounce....

Yesterday, I spent my first day as a volunteer at the Orpheus Centre. The sharp-of-memory among you will remember that this is where our daughter works as a community fundraiser and that it is a charity which encourages young people with disabilities to use their talents in the performing and other arts as a gateway to independent living. Since I am not yet back at work (and won't be working full-time in any case), I wanted to put some structure around my days and also do something in the community, so this seems like a good opportunity to get involved in something new and be more outward-looking.

Reader, I loved it! I was working with a group of students (they are all aged between 18 and 24) in a Futures workshop, where the students are preparing for, doing and then writing up their work experience activities. I worked with a young woman who has Downs, helping her produce a record of her work at a Day Centre, where she lays tables, serves food to elderly people and clears away. We had a lovely day (well, I did, at any rate! you'd have to ask P whether she did as well) and by the end of it, she had produced her worksheet of photos and comments. It is such a lovely environment to work in - so positive and supportive. Everyone was really friendly to me - I got several hugs from students and one young man walked me to the classroom, holding my hand and miming bagpipes because he knew I am Scottish - he has limited speech, so I am going to try to learn some Makaton so that I can communicate a bit with him. I recognised one other volunteer - the chap who led the drumming workshop at my church a few weeks ago ( I blogged about it). I hadn't realised he volunteered there, so we had a quick catch-up and it always helps when you see a face you recognise, doesn't it?

I found the day quite exhilerating, but very tiring. I was there from 9.30 till 2.30, so was home well before three o'clock and was fit for nothing but stretching out on the sofa for a couple of hours (lightweight!). I had Pilates at six o'clock, which I managed to stay awake for, although it was tough at times....

Today, I was at my Institute's South East Spring Conference and AGM. I was fortunate enough to be given a slot on the programme to ask for sponsorship for the London Marathon from the delegates and, although I found it hard to stand up and talk in front of a room full of people (some of whom I knew, many of whom I didn't). I knew there was the potential to get upset, not necessarily because I had to talk about what had happened to me, but because I was thinking that the reason I had missed this Conference last year was because I was just starting down the path of medical examination to find out what was wrong with me - and also because standing up and inviting people to look at my face still makes me squirm a bit inside. As often happens at these potentially emotional times, I used humour as my shield and got a couple of laughs out of them - and about £150, with the promise of more to come! So it was well worth the squirminess to get some more money for Macmillan.

By three o'clock, I was visibly wilting - two days in a row of different activity had taken its toll, so I went home early and have been relaxing on the squishy sofa. I'm glad I've had two busy days, as it helps me gauge my stamina (not quite as good as I thought it was, but then again, I've still got the remnants of this rotten cold) and it keeps me outward-looking, which I need to be.

I have had a positive week so far - I think I am really going to enjoy working at Orpheus and am looking forward to next week's session. Today was a great opportunity to hear some superb speakers and to catch up with old friends (I saw about four people I taught when they were studying for their accountancy qualification!) and to do some networking. I have had a very exciting invitation to an event from a lovely friend (won't give any details till nearer the time, just to keep you all reading this blog!!) and a positive chat about some potential work later in the year, so for once, I feel things are going my way.

I've just been talking to Neil on the phone, telling him about my good day today, and I said that I have had such a brilliant day that I am almost waiting for my bubble to burst. I think this is a reaction to having had such a shocker of a year last year and getting to the stage where I think that I am always going to get bad news (ever the pessimist, eh?) - I should just be happy and enjoy the moment. And I am happy and I am most definitely enjoying the moment - in fact, I am sitting here with a face-splitting grin :-D))).

Life is good and I am enjoying mine.

Monday, 19 March 2012

One year since it all started.....

Ha, so much for my seven consecutive days of blogging - I ended up with a stinking cold and wilted, like a flower without any water.......just had no energy, spent most of the day coughing and pretty much most of the night doing the same, to the point where my ribs ached and I tried desperately to hold the cough in just to avoid feeling that horrible stabby pain, eventually having to just give in and cough away, one hand clutching my ribs and the other in front of my mouth!

You'd think, after all my body has coped with over the past year, that a cold would be something I could take in my stride, wouldn't you? But no, it knocked me for six. I suppose that might mean that my immune system is not yet back up to full speed. Of course, this meant no exercise for several days, so I am feeling a bit antsy and fed-up about that. Back to the gym tonight to an aerobics class, which I hope to manage without having to stop for a coughing fit - if I can do that, I know I am on the road to full recovery.

Talking of all my body has dealt with over the past year brings me to another reason why I haven't posted. On Saturday, the 17th of March, it was exactly one year since I first felt the lumps in my jaw and thought that something wasn't quite right. Little did I realise then just how big an impact those two little lumps would have. This time last  year I was blithely thinking that I had some kind of infection and my glands had swollen up to fight it - yes, unusually only on one side, but I didn't think that was anything untoward. I do tend to think of events as "BC" or "AD" - Before Cancer and After Diagnosis, as if finding out I had cancer caused a seismic shift in my world. Did it? An interesting question - I look at my life and so much of it is the same: same husband and children, same friends (for the most part - one or two whom I thought would be more actively interested went very quiet very early and have stayed that way and conversely, some people have stepped up to the plate and proved themselves to be trusty companions), same house, same lifestyle, same interests....when I look at it like that, not much has changed.

And yet......I feel changed. I feel - I know! - that my approach to life has altered. I feel that, having been given what to me I can only describe as a second chance at life, I have been given the most precious gift: time on this earth. That fills me with such a deep appreciation and thankfulness for all the wonderful work of our NHS and the love and support of my family and friends that I hope I never take any of them for granted again. I feel that I have a renewed appreciation of the simpler things in life, too - I have found such gentle pleasure in listening to birdsong, watching our cats move from one sunny spot to another as the sun moves around the garden, seeing plants and flowers change over the seasons. Nothing sophisticated involved, just nature doing what she does. I don't feel that material things are as important as once I did - yes, I am lucky that we have a nice house in a beautiful area, but I am not fussed about having a newer car or the latest trendy kitchen/garden/technology "must-have" (although I have to confess to having upgraded to the iPhone 4s - I never said I was perfect!!). I have realised that all that really matters is health, family, friends and love.

I make no apologies for sounding like a mawkishly sentimental Pollyanna today. This is how I feel. I've had a lot of time to reflect on life over the last year and although this time last year I had no idea of what a bumpy ride I was going to have, it became clear within a few weeks, so I had to get used to this new set of realities fairly quickly. I think that, on the whole, I've coped.....okay. There have been bad days and there have been good days. In recent months I have had more good days than bad and I know that I have effective coping strategies for the bad days.  When I look back at what's happened to me and my family over the past couple of years, we've coped with my brother dying at the age of 47, our daughter travelling to some of the most dangerous parts of the world, my diagnosis and treatment, my mum being sectioned and then moved into a care home after being diagnosed with dementia - that's quite a list of things. The important thing is that we have coped and we will continue to cope with what happens next. The only thing we know for sure is that I will have more surgery to my face. As for the oncology side - my latest check-up, on Friday of last week, was fine and that's all I can be sure of. I am as healthy as my last check-up. At the moment, the gap between appointments is one month, but I am hopeful that this will gradually be extended as I (fingers crossed) start to have consistently clear results from the physical examinations.

While this blog post contains a lot of looking back, there's a lot of looking forward too. I think that's how I am living my life at the moment - reflection, processing, anticipation and hoping. Is this so different from everyone else's life? I suspect not.

Tuesday, 13 March 2012

Three days and counting!

Evening, all! I'm sticking to my plan to post for seven consecutive days with the latest (and probably very boring) account of today.

The alarm went off at 6 o'clock for us to go to the gym - however, today Neil went on his own, as I felt a bit tired still, so stayed in bed and fell asleep again. Must have needed it! I did get some exercise, though, as I went to a Zumba class later in the morning and then did a fast(ish!) run on the treadmill in the gym - not for long, but just to try and see how I dealt with a more speedy pace. The answer? - okay for a short while, but not sustainable for any length of time (yet!).

I popped round to my friend Sally's house for a cup of tea and a catch-up this afternoon - it was lovely to sit out in the garden, enjoying the sunshine. Back home, a bit of domestic stuff and then off to Pilates, which I am rather enjoying now, after not being very convinced about it when I went to my first class a few weeks ago. However, I now think I can feel the benefits and it seems to incorporate some quite good physio for my shoulder, although I'm a bit limited in the range of movement sometimes. The instructor is very good about checking up on how I'm doing and suggesting slight variations to the exercise to accommodate my compromised shoulder.

And so, back home again, dinner eaten and a quiet evening in store. I'm dutifully zapping my face to try and encourage some nerve memory and to prevent the muscles lengthening, so I'm sitting here with my little electrodes attached to my mouth and chin, while Amy has her hair done in the other room and Neil is (like I am) stretched out on the sofa, with a cup of tea to hand.

Tomorrow, the plan is to go to the gym first thing, then I want to sort out some paperwork and do various domestic bits and pieces. Our friend Jonathan is calling round in the evening, so we will probably walk down to Old Oxted and have some dinner there.

I did say this would be boring! I've been so busy the last couple of days that I haven't had much time for introspection, which is probably a good thing. I did meet my friend Sally's neighbour today, as we walked from Sally's house for her to pick up her daughter from school and I was a bit self-conscious about my face, but didn't feel any need to explain why my mouth didn't work properly. And in other news, my CRB check came through, so next Tuesday I start as a volunteer at The Orpheus Centre, which will be really interesting as well as being a worthwhile use of my time - until I go back to work (whenever that might be...), I want to get to the end of each week and think "Yes, you made good use of the week", rather than feel I have frittered my days away.

Monday, 12 March 2012

Two days on the trot... Blimey!

Phew! Realised in time that I want to try and post every day this week.

Not much to report, really - gym this morning with Neil, where I did 40 minutes on the treadmill. I was pleased with that, as I find it quite hard to keep on going on the treadmill because the scenery never changes! Some resistance and floor work and then home to get ready for the next activity -a walk on the North Downs with Sue. We walked for about an hour and a half at a fairly brisk pace (another of my old running routes) and then had a cuppa at Sue's house. Back home and another change to get ready for lunch -my old boss from when I was a lecturer had arranged to come over and we walked down to Old Oxted for lunch and a good blether.

In all this activity I amused myself with some laundry and other domestic delights but managed to sit in the garden and read for a while.

Quiet evening this evening and gym again in the morning, providing I feel fine when I waken up! I'm booked in for zumba and pilates tomorrow, so my energetic regime continues :-)

Sunday, 11 March 2012

Well, so much for posting every day!

Massive fail in my challenge to post on my blog every day for a week - after the weird format post of Friday, I'm not doing very well, am I?

I actually didn't have time to post yesterday - by the time we had driven round to our friend's house, borrowed his flat-bed truck, come home and loaded up stuff to take to the bulky waste collection point (our local Council provides this service every few months, so we had a stockpile of old carpet,furniture and things falling under the category of "stuff" which we wanted to get rid of), it was already 1 pm. We were also using the truck to go to IKEA in Croydon to buy bedroom furniture for Amy's bedroom, which we have now decorated and recarpeted. It's not the most pleasant of experiences, driving up to Croydon, at the best of times, let alone on a Saturday when everyone seems to have been bitten by the DIY bug and is heading to the Purley Way! It was made worse by the fact that the wardrobes came in two different heights and I didn't know which one would fit in the bedroom - mea maxima culpa;I should have taken the measurementscwith me. Neil was very patient (he really is a saint!)and we bought some chests of drawers, took them home, had a cup of tea and then went back! We didn't get home till half six and had just enough time to get showered, changed and then pick up our friends to go to another friend's 50th birthday party.

The party was good -in a golf club, so quite posh. None of my nice dresses fit me any more, so I was a bit limited in what I could wear -I don't have any smart trousers that fit me either, so it really was a case of what was the least baggy thing! We knew quite a few people there, as birthday boy is in Neil's mountain bike club, so there were probably about 12 couples that we knew and I had a good catch- up with a few of them. I didn't dance because I just didn't feel like it (and was starting to flag quite a bit) and in any case, I didn't recognise some of the music (middle-aged gimmer....). The party ended at midnight and by the time we said our goodbyes, we didn't actually leave until about twenty five past twelve. I had offered to drive, as I don't drink at the moment anyway, so I fulfilled my chauffeuring duties (no peaked cap or uniform, I'm afraid...).

No prizes for guessing that I have been feeling very tired all day today - yesterday was probably the longest in terms of sustained activity that I have had in about a year. Maybe I am not quite ready for full days at work plus commuting quite yet.....but I'm getting there.

I'll try to post tomorrow but on recent form, don't hold your breath!

Friday, 9 March 2012

Flaming internet!

Sorry about the format of my latest blog - I was merrily typing away earlier today when our internet crashed and signal coming through the cable box for either tv or internet, so had to book an engineer for Monday - and then miraculously it all came back of its own accord! However, I lost all my blog post except for the preview copy which I had opened on a separate page (not the full post, but most of it, thankfully!) but I could only use it by copying and pasting the whole blog and then deleting stuff. Unfortunately, it means no one can comment on the blog because it's in a weird format!! So, if you have any illuminating/funny/serious/kick up the backside comments - you can make them on this post and not the previous one!!


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 :-)