One year on....

Tomorrow, it will be exactly a year since my last radiotherapy session. The timing was both good and bad: I finished treatment the day before my birthday  this was good, as it meant I didn't have a trip to hospital on the day itself, but bad because by this stage in my treatment, I was feeling pretty dire and didn't have the energy, inclination or appetite (either physical or emotional) to enjoy the day!

And now? Well, what a difference a year makes, truly. I've had no further treatment since my last r/t session and all my check-ups since February, when I was told that I was in remission, have confirmed that I remain so. After a continuing dip in my health following the end of r/t (all to be expected and very normal), I have slowly regained strength, both physically and mentally. While I don't think I am yet back at the levels of stamina - again, both physical and mental - as I was before I became ill, I am very much on the way. A normal week for me now will include three or four sessions at the gym, at least one run outside of these sessions, a day volunteering at Orpheus, work for Facial Palsy UK and the normal demands of running a home - I don't think that's too bad, given where I was a few months ago.

Yesterday, I had my second session of Botox around my mouth. This helps relax the over-compensating nerves/muscles and improves symmetry of my smile. Finally, when I do an open-mouth smile, you can see some of my teeth on the left side of my face! They have been hidden from view for over a year, really, so it's a very visible sign of improvement that I can now glimpse them again. One of the risks for people with facial palsy is dental problems, because of the difficulty in keeping the teeth clean in a mouth that doesn't work properly - this risk is exacerbated for me because of having had radiotherapy, which weakens the teeth - so I am very diligent in my teeth cleaning and I am pleased to say that, despite having been hidden from daylight for so long, my newly exposed teeth look pretty good! <gleam>

During my talk with the plastic surgeon yesterday, we once more discussed the likelihood of surgery to my face next year and I think we are both agreed that if I continue at my current rate of progress, the chances are that the original surgery he was thinking of will have such a marginal effect that it won't justify the trauma and risk. He says that I am making good progress, which is encouraging because sometimes, when I have my little dark nights of the soul and wonder what the point is in doing all these facial exercises and zapping my chin every day with my little trophic stimulator, I need to remember that nerve recovery in the face is notoriously slow and that improvements will be microscopic but cumulative. My surgeon showed me photos yesterday of how I looked when I had my first consultation with him, in October last year, and I was surprised by the difference. Perhaps I had blanked out just how bad my face looked when my palsy was at its worst - and of course, last October I was at my lowest ebb both physically and mentally, which would possibly have manifested itself in how I presented myself to be photographed. So yes, it is worth continuing with my regime because it is making a difference, albeit slowly.

I do still have these periods where I feel down about what's happened and I expect this will continue for some time, but they seem to be getting more infrequent and I have good coping strategies (normally they involve putting on my running gear and getting out on the Downs!). I am still at the stage where any twinge or unusual ache makes me worry that cancer has decided to pay me another visit, but I try to be rational and sensible about it, rather than go racing off to the GP with every ache or pain! I had my routine mammogram last week and I am reminding myself that any woman would be anxious about the results, not just me! I was a bit surprised that the fact I have had two PET CT scans in the past year didn't negate the need for a mammogram, but I assume that it's a different examination looking for different things.

So, what am I doing to mark the 1 year anniversary? My mask, which I had to wear every day for my radiotherapy and which is a ghoulish reminder of my treatment, has for some months been relegated to our basement. To those visitors who were forced to look at it, when I would present it with a dramatic flourish, I apologise. Clearly I was just trying to get some extra sympathy :-). Now I have some distance, both temporally and emotionally, between the treatment and today, I don't have to demonstrate or explain what happened quite so much. This is good. It means I have stopped dwelling on it. Tomorrow, I am going to Oxford Street with Amy to do some shopping and then she is taking me to see the matinee performance of Blood Brothers, which I have been wanting to see for ages - when I think of a year ago, and how genuinely ill and (a)pathetic I was, the prospect of spending a day in London would have been unimaginable.

On Friday, we are going en famille to the Paralympics - we have tickets for the evening athletics session in the Stadium and we are all desperately excited about it. I can think of no better way to spend my birthday than with the people I love most in the world, watching the amazing achievements of athletes who have worked to become the best in the world while dealing with whatever disability life has given them - how humbling and awe-inspiring are they?

Thank you for reading :-D

It's hit the shelves!

Very quick update - you remember I have hinted at a secret I couldn't tell you? Well, I can tell you now (if you haven't already read it on Facebook!). I am featured in an article in Prima magazine, the September issue (which is on the shelves now). I wrote to them and asked if they would run a feature on facial palsy and they asked me to write it - fee being paid to Facial Palsy UK charity - and sent a photographer round and everything! It's been lightly edited to suit their house-style but remains pretty faithful to how I wrote it.

I am so excited! Anything that raises awareness of facial palsy has got to be good news!

Rush out and buy it, folks!!

It's going to be an eye-opener....literally!

Quick update to share some breaking news with you all - you may remember that, during my original surgery in May 2011, the outer corner of my left eye was sewn to reduce the amount of cornea exposed. This was because blinking is very often compromised when the facial nerve is severed and reducing the eye surface reduces the risk of debris damaging the eye. However, my blinking is good and so my eye surgeon agreed to reopen the eye.

This was scheduled to happen in December 2012 (the surgeon has a loooooong waiting list!) but yesterday I had a phone call from the Queen Victoria Hospital to say that my surgeon has had a cancellation and I can have my surgery on Monday next week. Did I want it? Hell, yeah!

I am now vacillating between excitement, nervousness and apprehension, in almost equal measure! The reverse-tarsorrhaphy (to give it its unpronounceable - to me, anyway! name) will be carried out under local anaesthetic and sedation, which I am told will  mean that I will be awake during the procedure but won't remember any of it. Most people would say that this is no different to my usual modus operandi :-) I blame the radiotherapy for my shocking memory nowadays - some of my brain cells have clearly been frazzled!

Tomorrow brings my check-up at the Royal Marsden - my first since April. I have found myself getting a bit anxious over the past couple of weeks, simply because three months feels like a long time to go without the reassurance of a specialist examination. I tell myself that the doctors wouldn't have let me go three months between check-ups unless they were certain that it is safe to do so, but the niggling doubts wriggle to the surface every so often. It's just the way it is. However, I take comfort from the fact that my dentist had a good feel around my head and neck only a fortnight ago and was happy with everything (she knows my medical history) so let's hope that's the case tomorrow as well.

I still can't tell you my exciting news, to which I alluded in my previous post. I will soon, honestly! Sorry to keep you in suspense....

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.

I'm still here!

Rumours of my disappearance or demise have been greatly exaggerated - the fact that I haven't posted on this blog for a month could possibly have led people to wonder what was going on, but the truth is I have been (a) busy, (b) on holiday and (c) busy, in that order!

I won't make this a really long blog post, detailing all the minutiae of my life over the last month, so this will be in the nature of an edited highlights entry!

Holiday was fabulous - Neil and I went to Sicily, a part of Italy we had never been to but were keen to visit, mainly because, as well as having a fascinating history, it has amazing mountains (we do like our mountains!). We flew into Catania and spent two weeks just outside a small hillside town called Francavilla, enjoying the peace and tranquillity and some climbing and walking. It wasn't a touristy place at all, which suits us fine - I've never understood why people want to travel to another country and then try to recreate their usual lifestyle, with diet, drink and tv they would have in the UK. Surely one of the points of going abroad is to experience different lifestyles and cultures? Otherwise it's just like being at home but with better weather and a chance to shout and point at things in a patronising manner because those "Johnny Foreigners" don't understand English....but I digress! Let's return to our holiday.

Our friend Jonathan joined us for 12 days - we do a lot of walking and climbing with him (he was part of our Kilimanjaro group 6 years ago)  - and during the time he was with us, we did two preparation climbs and some small walks so that we were as ready as we could be for the Main Event - the ascent of Mount Etna! Etna is an active volcano and was particularly active during March of this year, so we were none too sure before we went to Sicily whether we would be able to get onto the mountain or not. Luckily, it's calmed down, although there are plumes of smoke rising from it every day - a wonderful sight which we could see from our villa every day. There's something so elemental and powerful about this manifestation of nature - not influenced by mankind in any way but controlled by something so much more forceful and unambiguous.

We set out to climb Etna on Neil's birthday - his choice of birthday treat! Up at 5 in the morning, breakfast of pasta, then a drive to the Refugio from where we began our climb. There are tours of Mt Etna, where you get taken up in a 4x4 to the Observatory and can do a short (100 metres or so) walk to a viewpoint, but we wanted to do it the proper way, using our own momentum to get up there. Boy, was it hard work! We walked onto the mountain at 7 a.m and arrived back at our car at 7.10 p.m - just over 12 hours of tough uphill and downhill walking, with a total of about 1 hour in breaks. We started off in lava dust, then struggled in lava shale and finally walked through 3 or 4 metre high banks of snow and ice - a strange experience, seeing smoke and steam rising from the earth, while surrounded by snow! Etna is 3,300 metres high (three times the height of Ben Nevis, I think) and the most ascent I have done in one day - while Kili is considerably higher, at 5895 m, we did it over several days, to acclimatise to the altitude. Tough, tough, tough - two hours into the climb, I honestly thought I was going to have to turn back, but Neil and Jonathan relieved me of a couple of the heavier items in my rucksack and I remembered the recuperative powers of chocolate and was able to carry on! It's amazing how a few squares of hazelnut chocolate can perk you up.

I have to say that climbing Etna is the toughest climb I have ever done (and before you think I am just a girly wuss, Neil and Jonathan agree it is a blimming tough climb!) and I discovered that 12 hours of solid, hard activity is pushing my boundaries a bit too far - during the night, after our climb, I woke up with a thumping headache and was sick, then felt headachey and listless all the next day. I suspect that 12 hours was about 2 or 3 hours too much for me at this stage, but you have to test the limits, don't you?

The remainder of the holiday included plenty rest, relaxation, reading, eating and enjoying Italian history and architecture. There's a lovely unspoiled feel about the part of Sicily we were in - people living a pretty unsophisticated life, working on the land, no airs and graces. We loved it - everyone was really friendly and, because no one really spoke much English, we were able to practise our (very poor) Italian and, in so doing, give them a bit of a laugh! We got mistaken for French or German people quite a lot, so I had some practice conversing in those languages too - good for my lazy brain! We dropped Jonathan off at Catania airport at the end of his stay and then Neil and I had another couple of days at an Agriturismo, during which we visited Siracusa and Noto - both more popular with tourists and therefore busier. There's just such an embarrassment of riches there, with the history, remains of Greek and Roman amphitheatres, wonderful churches and civic buildings, all topped off with wonderfully friendly people. We loved it (well, except for driving into Catania, where we experienced just the worst, most inconsiderate, dangerous driving we have come across - even by Italian standards, it was dreadful!).

Since coming home, I have struggled a bit due to the appalling weather. My mood is always affected by bad weather (that's why I am such a miserable ratbag over the winter months) and this pathetic excuse for a summer is really getting me down. However, I have resorted to my usual remedy of exercise and that seems to be helping.

I can't end this post without remarking on the fact that, while we were away, it was the anniversary of my surgery. Given how I felt this time last year, I am even more in awe of the resilience of the human body and the work of the NHS - just over a year to the day of having pretty intense surgery, with all the subsequent treatments and side-effects, I was standing at the top of Mt Etna. That's pretty good, I think! It's not just the physical stamina and energy, but the fact that I feel much better about how my face looks and was happy having photographs taken and didn't feel at all self-conscious about how I looked. I think that's real progress.

Oh, and I also featured in our local newspaper, which ran an article about my London Marathon exploits :-)

Mrs Bounce-Back has bounced back.

After my little blip on Friday, I think I am back to my usual positive self. Thank you for the comments left here and on Facebook (also texts and emails). It means a lot and it does help when friends take the trouble to reflect on what I've said and to respond. I know that these blips will happen and I know that I can deal with them, but initially the blip feels a bit like being on a train that has derailed and there's a sense in which I wonder whether I can get back onto the right track. However, I think I am back on the right track now!

It helps that I have found out that Adam Yauch's cancer was of a different type from mine. I got a very helpful text from our next door neighbour's daughter (the anaesthetist married to a surgeon, who I sometimes view as my own personal physician :-)), telling me that, off the top of her head, she knew there were 11 different types of cancer which occur in the parotid gland, plus others which can be secondary cancers, so that made me view the odds a bit more sensibly. I am resisting the temptation to use the services of Dr Google and start investigating details, including prognosis, for my particular type of cancer. I take the view that until the professionals advise me to put my affairs in order, I should carry on as normal. That means keeping myself healthy, staying busy, looking for work and caring for my family. I think I am achieving a fair degree of success in three out of four of these - the work one isn't going so well! As you can imagine, finding project work in local government is a bit like searching for the Holy Grail.

I could really have done with some sunny weather over the bank holiday weekend, to lift my mood and make it more pleasant to be outside! Sadly, this was not to be, except for one or two brief spells of no rain and a glimmer of sunshine. I did a five mile fundraising walk on Saturday afternoon for the Orpheus Centre, which was followed by entertainment from one of their former students, a very talented singer. I enjoyed that, getting some fresh air and exercise, even if I was a bit muddy by the end of it! Neil and I managed to get out for a longish walk on Monday, in the bluebell woods, with a very tasty pub lunch as our reward.

Since then, it's back to the usual routine of home, domestic goddess impersonation and exercise. Yesterday Neil and I met up with an old friend and had a good catch-up over dinner. One of today's tasks is making my Hermann cake - anyone else done this? It's basically a chain cake, where you receive a portion of cake mix, fermenting away as it has a yeast base, and you "feed" it for ten days, then split it into four, give away three portions along with the instructions and cook the fourth. I did it earlier this year and really liked the result.

Later still, I think I might be forced to do a Sun Dance, just to get some better weather!

Over- thinking?

After several weeks of good, positive feelings and a real sense of making progress, perhaps it was inevitable that something would come along and side-swipe me. The news yesterday that MCA, from the band The BEastie Boys, had died has hit me harder than it ought to. I don't particularly like the Beastie Boys. I'm not a big fan of their music. They don't feature on my iPod. So why did I find tears on my cheeks last night? Because he died of cancer in his parotid gland - exactly where I had mine. If I needed a reminder that this disease is sickeningly evil and destructive, then I certainly got one. I know that each case is unique and you can't accurately predict that two people with the same type of cancer will respond in the same way - and anyway, I don't know what type of cancer he had in his parotid. It could be a totally different type, at a different stage when diagnosed, he could have had different doses of radiotherapy; there are all kinds of things that could be different. But still, I find myself brought up short and having, once again, to confront my deepest fears and insecurities. Already I have asked the ever-patient Neil to reassure me that he'll not leave me, no matter what. He is so good at recognising my worries and calming me down - not that I am hysterical or even a bit distrssed. It's more a sad resignation to the reality, once again brought into sharp relief, that this horrible disease never quite leaves you alone. Even if it's not physically present in your body, its malevolent voice is talking in your head. I can't silence it permanently. I am hoping this is a temporary blip in my otherwise positive progress of the past few weeks. I have been reassured by family and friends that I shouldn't worry about something that happened to someone else, but I think part of the problem, for me, is that parotid cancer is so rare that anyone dying of it is news - somehow, if I had a more common cancer, I could believe that the chances of it being a different strain, a different type, to mine are greater. Des that make any sense? It does to me.