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.

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!

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!

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.