People are so generous. Even at this time, when there's not a lot of spare money floating about and everyone is feeling the pinch, we raised £1500 for Facial Palsy UK at our CIPFA SE Dinner on Friday night. I was feeling a bit anxious beforehand, as I mentioned in last week's blog, and this anxiety manifested itself in a nagging headache which began at about 3 o'clock on Friday afternoon and remained there, despite taking some paracetamol. For the first time in a long time, I hadn't any of my super-duper co-codamol with me, which might have got rid of my headache had I been able to take them! My headache continued to develop during the rest of the afternoon and early evening and eventually led to me leaving at about half ten to go home - but first, the dinner! We had a champagne reception beforehand (how lucky for me, given that it's the only alcohol I can tolerate) and while people were sipping at their drinks, Ro and I were going around "persuading" people to buy some raffle tickets.
At the beginning of the meal, once everyone was seated, our regional President invited me up to say a few words about Facial Palsy UK....in front of 240 people. Imagine standing up in front of a room with that number of people in it when you feel completely confident in how you look - wouldn't you be a bit nervous and apprehensive? You can guess, then, how I felt, knowing that my face wasn't quite right and that it would be the focus of everyone's attention for the next several minutes. However, it had to be done if I wanted to raise the profile of Facial Palsy and encourage people to buy raffle tickets, so I took a deep breath and a gulp of champagne and took to the floor. Whatever I said must have worked, as we ran out of raffle tickets! That's not a bad position to be in, especially as my friend Ro then rattled the collecting tin at the end of the evening, after I had gone home, and proved that the need for loose change is in inverse proportion to the amount of alcohol consumed :-). I went home with a sore head but a happy heart (and £1400 in my bag!), knowing that Facial Palsy UK was going to have a bit of a boost to its bank balance. Thank you to everyone there who helped with that great achievement (and to the kind people who said my speech had really moved them).
And so to Saturday and the beginning of an annual event in my social and racing calendar - the Sodbury Slog. Those amongst you who don't understand the attraction of ploughing through mud, climbing hay bales when there's a perfectly good stile hidden behind them, splashing through thigh-deep muddy water and hauling yourself out with a rope, or running with pounds of claggy mud turning your shoes into Frankenstein's monster's clumpy footwear, will wonder why, oh why, oh why I would want to do this voluntarily. Well, it's because it's the most fun you can have with your clothes on, as far as I'm concerned. It's sociable, I meet up with friends I don't see except at Sodbury, we stay in a lovely hotel, I get to wallow in mud and don't get told off for ruining my clothes - what could be better? Okay, there's a bit of running involved - or, in my case, sliding, falling over and plodding - but it's just a wonderful day. Because the race is always on Remembrance Sunday, we have a bugler playing the Last Post, a two minute silence and a reading of those most poignant lines "At the going down of the sun and in the morning, we will remember them" so I always start the race wiping tears from my face. To me, running through beautiful countryside on a perfect, sunny autumn morning is a perfect way to respect those who gave their futures so that I could have my present.
To anyone who hasn't yet discovered the joys of cross-country running - try it! The worst that will happen is that you will get covered in mud and glaur :-)
Have I converted you yet?
Tuesday, 13 November 2012
Thursday, 8 November 2012
Old friends, new charities and same old anxieties!
I have often been struck by the way in which my daughter and her friends, when teenagers, and indeed many teenaged girls, are so much more affectionate and open in their feelings than I remember being when I was at school. Lots of declarations of "Love you" and hugs, kisses and more hugs seem to be the order of the day when greeting each other or saying goodbye nowadays. When I was their age, we didn't even hug each other, let alone give voice to any feelings of love or affection. Why was that? Were we worried that we would be mocked for being open in our feelings? Worried that perhaps our words might be misinterpreted and our sexuality questioned? - this was the 70s, remember, when the common expectation was that everyone was heterosexual and we weren't confident enough to want to be thought of as somehow different? Whatever the reason, we just didn't do anything more openly affectionate than maybe writing "Loadsaluv" in a Christmas or birthday card, as if spelling it in a jokey way meant it couldn't possibly be viewed as anything other than a whimsical, throwaway sign-off.
Interestingly, in recent years when I have met up with, spoken to or been in written contact with my very old school friends ( from my old all girls school), I've found that my closest friends and I often sign off with "Love you", either face-to-face or in emails. Is it because we are more confident now that we can say these things without fear of being mocked or thought of as overly "touchy feely"? Or is it because, being older, we are more aware of the preciousness of good friendships? The kind of friendships formed when you are in your early teens are perhaps particularly special because we were all growing up at the same time, facing the tsunami of puberty, beginning to form our own opinions rather than believe everything our parents do, thinking of our futures and what we wanted from life and making that most tricky of transitions from childhood to young adulthood. Whatever it is, there is some bond there that seems to be pretty much unshakeable, even if we don't see each other for years, sometimes decades and which means that, as soon as we do meet up, the years just roll away and that closeness, that warm support of each other is as strong as ever. Maybe it is even stronger now, as we have all faced our own battles over the years and emerged bruised, a bit fragile but still strong in our friendships and belief that we will continue to be friends.
These feelings all manifested themselves when I met up with 11 of my old school friends a fortnight ago at a small, but perfectly formed, reunion of the class of 1970 - 76 from the Glasgow High School for Girls. We had a huge reunion two years ago, with around 50 of us meeting for a ceilidh, a few meals and a good old blether; it was such fun that we decided that we would try and have a meet-up once a year, even if it were only a few of us. I obviously couldn't make last year's meet-up, so I was particularly keen to go this year. I combined it with a sleepover at Adam's place in Carlisle, so I got to spend some time with him. As usual, I was anxious at the thought of seeing people - only three of my friends from school had seen my new face and, while my head was telling me that it would be fine and that these were all people who had been hugely supportive in their comments on Facebook and in emails to me, my heart was saying "It's going to be horrible, they'll stare at you or if they don't stare at you, the other diners in the restaurant will stare at you". I so wish I could stop these feelings surfacing every time I anticipate social events. I had hoped that, with time and given that my face does look so much better than it did at the beginning, my confidence would have given chase to the worry but it doesn't work like that. I confided in one of my friends, Fi, about how I felt and she understood exactly and, in fact, said that others had been fighting their own battles of one kind or another, so there would be nothing but support and warmth. Of course, she was right. We had a wonderful time and I even felt okay about having my photo taken, perhaps because a couple of glasses of Prosecco relaxed me to the point where my usual fears about being near a camera disappeared.
Strong, feisty, funny, caring and intelligent women - it was wonderful to spend time with this group of friends. We're already planning next year's reunion and thinking big: we're investigating renting a big house/small castle for the weekend so we can really let our hair down and not be constrained by restaurant closing times or last trains.
My trip to Glasgow was sandwiched between visits to Adam. He gave up his bedroom for me, being a dutiful son, so in return I made him and his flatmates a couple of lasagnes, a chicken casserole and a Sunday roast, being a dutiful mum! It was good to see him and spend some time with him. University life seems to suit him.
This weekend it is my favourite race - the Sodbury Slog. It's a cross-country race starting and finishing in Chipping Sodbury and of variable length, depending on which farmers have given permission for their land to be crossed, but normally around 9.6 miles. And muddy - you have no idea how muddy! There will be a stream we have to wade through which, on normal sized people, will be about knee high but on me will be about thigh high, if not higher and which we have to climb out of, hauling on a rope to help us up the slope - that will be quite a test of my dodgy shoulder! It's the most fun you can have with your clothes on and I was so disappointed to miss it last year. Once again, this is another box to be ticked in my return to normal. I've got my usual room in the hotel where a bunch of us always stay the night before and we will take over the local Italian restaurant after the race for lunch. I'm looking forward to it but with my usual sense of gnawing anxiety about how my face will be received. Yes, I know it's silly and that I will be amongst friends, but I just can't help it.
Before that, though, I have my Institute's Regional Annual Dinner at a posh hotel in London. It's a great event and you might remember that last year Neil and I were invited as guests of honour. It was quite a difficult evening for me for the reasons you all know: showing my face when it was so much worse than it is now, still suffering the after-effects of radiotherapy, unable to eat and feeling constantly on edge about how I appeared to people. This year should be so much better, but there's still that unease about my face. This year, however, I have been asked if I would like Facial Palsy UK (the charity I have been involved in setting up) to be the charity we support with our raffle over dinner, so of course I said I would and offered to say a few words about it so that people know what they're actually supporting. We're a little known charity and, let's be honest, not many of us know anything about facial palsy - I certainly didn't before I got it! Spreading the word about the charity and the condition will be invaluable so it's important that I make it personal by talking about what happened to me and how it feels to have FP. So I shall be standing up in front of over 200 people and talking about my experience. It feels a little bit daunting but it's important to do it. In a piece of good timing, there was an article on the BBC website about living with Bell's Palsy, so at least some of the people there tomorrow might know something about some aspects of facial palsy. Did any of you see it?
http://www.bbc.co.uk/news/magazine-20206297 will give you an insight into what it's like. If you look at the photos of the woman who chronicled her recovery (Bell's Palsy is, for the vast majority of people, a temporary condition from which they will make a full recovery), my smile is now at about the stage of her photo on the extreme left of the third row down. However, I started from a much worse position than she did, as my cheek was actually hanging down on the left-hand side, so that helps me see how much improvement I have had. I'll never get back to what I was before but at least you can now see a bit of a smile on the left side of my face.
Next week, we have the press launch of our new charity so look out for coverage in newspapers and magazines after Friday 16th.
Signing off now, with my usual thanks and love to the people who help me get through every day and every week.
Interestingly, in recent years when I have met up with, spoken to or been in written contact with my very old school friends ( from my old all girls school), I've found that my closest friends and I often sign off with "Love you", either face-to-face or in emails. Is it because we are more confident now that we can say these things without fear of being mocked or thought of as overly "touchy feely"? Or is it because, being older, we are more aware of the preciousness of good friendships? The kind of friendships formed when you are in your early teens are perhaps particularly special because we were all growing up at the same time, facing the tsunami of puberty, beginning to form our own opinions rather than believe everything our parents do, thinking of our futures and what we wanted from life and making that most tricky of transitions from childhood to young adulthood. Whatever it is, there is some bond there that seems to be pretty much unshakeable, even if we don't see each other for years, sometimes decades and which means that, as soon as we do meet up, the years just roll away and that closeness, that warm support of each other is as strong as ever. Maybe it is even stronger now, as we have all faced our own battles over the years and emerged bruised, a bit fragile but still strong in our friendships and belief that we will continue to be friends.
These feelings all manifested themselves when I met up with 11 of my old school friends a fortnight ago at a small, but perfectly formed, reunion of the class of 1970 - 76 from the Glasgow High School for Girls. We had a huge reunion two years ago, with around 50 of us meeting for a ceilidh, a few meals and a good old blether; it was such fun that we decided that we would try and have a meet-up once a year, even if it were only a few of us. I obviously couldn't make last year's meet-up, so I was particularly keen to go this year. I combined it with a sleepover at Adam's place in Carlisle, so I got to spend some time with him. As usual, I was anxious at the thought of seeing people - only three of my friends from school had seen my new face and, while my head was telling me that it would be fine and that these were all people who had been hugely supportive in their comments on Facebook and in emails to me, my heart was saying "It's going to be horrible, they'll stare at you or if they don't stare at you, the other diners in the restaurant will stare at you". I so wish I could stop these feelings surfacing every time I anticipate social events. I had hoped that, with time and given that my face does look so much better than it did at the beginning, my confidence would have given chase to the worry but it doesn't work like that. I confided in one of my friends, Fi, about how I felt and she understood exactly and, in fact, said that others had been fighting their own battles of one kind or another, so there would be nothing but support and warmth. Of course, she was right. We had a wonderful time and I even felt okay about having my photo taken, perhaps because a couple of glasses of Prosecco relaxed me to the point where my usual fears about being near a camera disappeared.
Strong, feisty, funny, caring and intelligent women - it was wonderful to spend time with this group of friends. We're already planning next year's reunion and thinking big: we're investigating renting a big house/small castle for the weekend so we can really let our hair down and not be constrained by restaurant closing times or last trains.
My trip to Glasgow was sandwiched between visits to Adam. He gave up his bedroom for me, being a dutiful son, so in return I made him and his flatmates a couple of lasagnes, a chicken casserole and a Sunday roast, being a dutiful mum! It was good to see him and spend some time with him. University life seems to suit him.
This weekend it is my favourite race - the Sodbury Slog. It's a cross-country race starting and finishing in Chipping Sodbury and of variable length, depending on which farmers have given permission for their land to be crossed, but normally around 9.6 miles. And muddy - you have no idea how muddy! There will be a stream we have to wade through which, on normal sized people, will be about knee high but on me will be about thigh high, if not higher and which we have to climb out of, hauling on a rope to help us up the slope - that will be quite a test of my dodgy shoulder! It's the most fun you can have with your clothes on and I was so disappointed to miss it last year. Once again, this is another box to be ticked in my return to normal. I've got my usual room in the hotel where a bunch of us always stay the night before and we will take over the local Italian restaurant after the race for lunch. I'm looking forward to it but with my usual sense of gnawing anxiety about how my face will be received. Yes, I know it's silly and that I will be amongst friends, but I just can't help it.
Before that, though, I have my Institute's Regional Annual Dinner at a posh hotel in London. It's a great event and you might remember that last year Neil and I were invited as guests of honour. It was quite a difficult evening for me for the reasons you all know: showing my face when it was so much worse than it is now, still suffering the after-effects of radiotherapy, unable to eat and feeling constantly on edge about how I appeared to people. This year should be so much better, but there's still that unease about my face. This year, however, I have been asked if I would like Facial Palsy UK (the charity I have been involved in setting up) to be the charity we support with our raffle over dinner, so of course I said I would and offered to say a few words about it so that people know what they're actually supporting. We're a little known charity and, let's be honest, not many of us know anything about facial palsy - I certainly didn't before I got it! Spreading the word about the charity and the condition will be invaluable so it's important that I make it personal by talking about what happened to me and how it feels to have FP. So I shall be standing up in front of over 200 people and talking about my experience. It feels a little bit daunting but it's important to do it. In a piece of good timing, there was an article on the BBC website about living with Bell's Palsy, so at least some of the people there tomorrow might know something about some aspects of facial palsy. Did any of you see it?
http://www.bbc.co.uk/news/magazine-20206297 will give you an insight into what it's like. If you look at the photos of the woman who chronicled her recovery (Bell's Palsy is, for the vast majority of people, a temporary condition from which they will make a full recovery), my smile is now at about the stage of her photo on the extreme left of the third row down. However, I started from a much worse position than she did, as my cheek was actually hanging down on the left-hand side, so that helps me see how much improvement I have had. I'll never get back to what I was before but at least you can now see a bit of a smile on the left side of my face.
Next week, we have the press launch of our new charity so look out for coverage in newspapers and magazines after Friday 16th.
Signing off now, with my usual thanks and love to the people who help me get through every day and every week.
Thursday, 1 November 2012
The one with the check-up, the work and the mud...
Last blog, I spoke of the anxiety I still feel in the week or ten days before my three-monthly oncology check-up at the Marsden. It's the scary thought that, if something has gone wrong in the first week after my check-up, it's had thirteen weeks to get worse, rather than the four weeks when I was on a monthly check-up cycle. I have to remind myself that the doctors, the oncologist, the experts, who make the treatment of this illness their life's focus, do know best and that they wouldn't put me on a three-month cycle if they weren't sure it was the right thing to do. Despite reminding myself of this fact and that I am not a doctor (although, perhaps understandably, I feel a bit of an expert on my condition compared to pretty much everyone I know!), the nerves kick in and I find myself bracing myself for how I will deal with bad news. I hope that, eventually and hopefully soon, I will start to feel less anxious.
And so to the morning of the check-up. Car on auto-pilot, I drove to the hospital, parked up and went in, prepared for my usual nervous wait. Somewhat to my surprise, I was called through early, weighed, and no sooner had I sat down in the consulting room and started reading my book than the consultant came in. Yes, dear reader, I was seen early! It was the top consultant as well, which always makes me feel a bit more reassured - not that I doubt the competence and knowledge of the less senior specialists, but I do seem to derive an extra layer of comfort from the opinion of the woman at the top. She did a thorough physical examination, asked me lots of questions for the multi-paged questionnaire she has to fill in to compile various stats and talked about how I am generally. She seems very pleased with my oncology progress - still in remission, so that makes it 8 months since the PET CT scan and a year since they initially said they were confident I was in remission, although I couldn't quite believe it until the PET scan showed no sign of anything untoward. Funny how I needed the mechanics and scientific objectivity of a piece of machinery before I could quite accept it, isn't it?
After making an appointment for three months' time, I popped my parking ticket into the machine, purse at the ready to feed its hungry metal mouth, only to find that I had been seen so quickly that I was still within the thirty minutes parking grace period! First time I think that has ever happened.
On my way back to Oxted, I called in on some very old friends (as in, I have known them for a long time, not that they are great in years) for tea and a chat (and a chocolate croissant, as it turns out). Their daughter has ME - and I know that one regular reader of this blog, Geves, has a daughter of a similar age who also has this (literally) crippling and debilitating illness - and she, her mum and I spent some time talking about the impact of illness and how to deal with it physically and psychologically. For someone with ME, I think the difficulties are compounded because there is such mixed perceptions of ME. It's clearly a genuine, and often extremely serious, illness but some people still don't believe it really exists, which means firstly that the ill person almost has to defend their tiredness, their nausea, their lack of interest and concentration and secondly that there is less inclination to fund research and give it the attention it deserves. No one queries the existence of cancer, so I didn't have to devote any energy or time to considering whether anyone thought my illness was real or just some psychosomatic, almost "trendy", affectation. How awful to be ill, to be unaware of whether you will get better and to feel that people don't really believe you. I know it's genuine, real and hard to deal with, for the patient and the family.
What else has happened? Well, I have returned to the world of work - I have a 30 day project at a prestigious London Borough, working two or three days a week. This suits me perfectly - I can carry on with my volunteering at Orpheus and still have a day a week at home to keep up with domestic stuff, paperwork, charity stuff for Facial Palsy UK and - dare I say it? - just take it easy. Interestingly, I 'm finding that I have no problem concentrating at work all day and am loving the decision-making, the challenges of work, the social side of the office and using my brain again but find the commuting absolutely exhausting - yet I have a really easy commute! I travel by train to London and then walk for about 15 minutes, so no need to travel on the tube. Yet I find myself drained by the journey - not helped by the fact that, at this time of year, people are beginning the first of their winter colds, so there is lots of coughing and sneezing going on. I also get more than just mildly irritated by the incessant ringing of mobile phones, usually with *zany* ringtones and the incredibly pedestrian nature of their conversations. "I'm on the train" - really? "What are we having for dinner?" -what, you need to know this now? Why can't you just wait till you're home and have a surprise?? Does anyone else find themselves simmering with anger at the constant noise, all exacerbated by the increasingly lengthy announcements by the train guard as we enter and leave every station - or station stop, I should say. "Please take all your belongings with you", "Please mind the gap between the train and the platform", "Please remember to breathe".....aaarrrgggh!! I really should go on that Grumpy Old Women show!
On October 14th, it was our local 10k trail race and I managed to plod around in a reasonably respectable time, splashing through the muddy puddles and having a great time. It's a lovely race, totally off-road and it was a glorious autumn morning, sunny and bright. Best thing - cakes afterwards :-). I have my favourite race in just over a fortnight - the Sodbury Slog. It's always held on Rememberance Sunday and is a fantastic mix of poignant and respectful observation of the two minute silence and a complete and utter mudfest, followed by lunch with fellow mad mudlovers. I missed it last year, obviously, so am very much looking forward to splashing through ditches, hauling myself out of muddy water with the aid of a rope and generally trying not to lose my shoes in the gloopy, sticky mud. Do I hear you mutter that I must be mad? Yep, you're probably right!
I'm going to end this blog entry here, as otherwise I will just continue to ramble. I really need to discipline myself to update this more regularly. Be afraid.....be very afraid....
And so to the morning of the check-up. Car on auto-pilot, I drove to the hospital, parked up and went in, prepared for my usual nervous wait. Somewhat to my surprise, I was called through early, weighed, and no sooner had I sat down in the consulting room and started reading my book than the consultant came in. Yes, dear reader, I was seen early! It was the top consultant as well, which always makes me feel a bit more reassured - not that I doubt the competence and knowledge of the less senior specialists, but I do seem to derive an extra layer of comfort from the opinion of the woman at the top. She did a thorough physical examination, asked me lots of questions for the multi-paged questionnaire she has to fill in to compile various stats and talked about how I am generally. She seems very pleased with my oncology progress - still in remission, so that makes it 8 months since the PET CT scan and a year since they initially said they were confident I was in remission, although I couldn't quite believe it until the PET scan showed no sign of anything untoward. Funny how I needed the mechanics and scientific objectivity of a piece of machinery before I could quite accept it, isn't it?
After making an appointment for three months' time, I popped my parking ticket into the machine, purse at the ready to feed its hungry metal mouth, only to find that I had been seen so quickly that I was still within the thirty minutes parking grace period! First time I think that has ever happened.
On my way back to Oxted, I called in on some very old friends (as in, I have known them for a long time, not that they are great in years) for tea and a chat (and a chocolate croissant, as it turns out). Their daughter has ME - and I know that one regular reader of this blog, Geves, has a daughter of a similar age who also has this (literally) crippling and debilitating illness - and she, her mum and I spent some time talking about the impact of illness and how to deal with it physically and psychologically. For someone with ME, I think the difficulties are compounded because there is such mixed perceptions of ME. It's clearly a genuine, and often extremely serious, illness but some people still don't believe it really exists, which means firstly that the ill person almost has to defend their tiredness, their nausea, their lack of interest and concentration and secondly that there is less inclination to fund research and give it the attention it deserves. No one queries the existence of cancer, so I didn't have to devote any energy or time to considering whether anyone thought my illness was real or just some psychosomatic, almost "trendy", affectation. How awful to be ill, to be unaware of whether you will get better and to feel that people don't really believe you. I know it's genuine, real and hard to deal with, for the patient and the family.
What else has happened? Well, I have returned to the world of work - I have a 30 day project at a prestigious London Borough, working two or three days a week. This suits me perfectly - I can carry on with my volunteering at Orpheus and still have a day a week at home to keep up with domestic stuff, paperwork, charity stuff for Facial Palsy UK and - dare I say it? - just take it easy. Interestingly, I 'm finding that I have no problem concentrating at work all day and am loving the decision-making, the challenges of work, the social side of the office and using my brain again but find the commuting absolutely exhausting - yet I have a really easy commute! I travel by train to London and then walk for about 15 minutes, so no need to travel on the tube. Yet I find myself drained by the journey - not helped by the fact that, at this time of year, people are beginning the first of their winter colds, so there is lots of coughing and sneezing going on. I also get more than just mildly irritated by the incessant ringing of mobile phones, usually with *zany* ringtones and the incredibly pedestrian nature of their conversations. "I'm on the train" - really? "What are we having for dinner?" -what, you need to know this now? Why can't you just wait till you're home and have a surprise?? Does anyone else find themselves simmering with anger at the constant noise, all exacerbated by the increasingly lengthy announcements by the train guard as we enter and leave every station - or station stop, I should say. "Please take all your belongings with you", "Please mind the gap between the train and the platform", "Please remember to breathe".....aaarrrgggh!! I really should go on that Grumpy Old Women show!
On October 14th, it was our local 10k trail race and I managed to plod around in a reasonably respectable time, splashing through the muddy puddles and having a great time. It's a lovely race, totally off-road and it was a glorious autumn morning, sunny and bright. Best thing - cakes afterwards :-). I have my favourite race in just over a fortnight - the Sodbury Slog. It's always held on Rememberance Sunday and is a fantastic mix of poignant and respectful observation of the two minute silence and a complete and utter mudfest, followed by lunch with fellow mad mudlovers. I missed it last year, obviously, so am very much looking forward to splashing through ditches, hauling myself out of muddy water with the aid of a rope and generally trying not to lose my shoes in the gloopy, sticky mud. Do I hear you mutter that I must be mad? Yep, you're probably right!
I'm going to end this blog entry here, as otherwise I will just continue to ramble. I really need to discipline myself to update this more regularly. Be afraid.....be very afraid....
Thursday, 11 October 2012
Does the fear of cancer ever really leave you?
Is it wrong to look at some people and feel simmering resentment that they are squandering their health by smoking, eating too much (and the wrong things), drinking too much, not exercising and so on? And is it wrong to think "But I ate healthily, exercised, didn't drink often, didn't smoke, looked after myself and I still got cancer"?
Well, if it's wrong, I still find myself doing it. I'm not wishing cancer on anyone else - why would I want anyone else to experience the stomach-sinking dread that a cancer diagnosis brings, the painful and harrowing physical side-effects of treatment and the emotional freefall that cancer gifts to you? But oh, sometimes I just want to shake people and say "Don't you realise the risks you are taking with your health?".
I used to feel like this a lot when I was first diagnosed and probably for about a year after, but the feelings have abated - until yesterday, when a friend phoned to tell me that she has just been diagnosed with cancer for the second time. This is a woman who has never smoked or drunk and who has looked after her health as best she can. She was diagnosed with breast cancer five years ago. endured the treatment and was heading towards her five year clear milestone when wallop! she gets a diagnosis of skin cancer. Skin cancer, in a woman who never sunbathes and has always been cautious about exposing her skin to the burning effects of the sun. The sheer injustice of it feels overwhelming for me, so what it must be like for her, I can only guess. This friend was incredibly helpful and supportive to me last year when I was facing my dx and treatment, with all the uncertainties, fears and emotions that it brought me - she was able to speak not only as someone who has dealt with cancer, but also as a radiographer, with professional experience of giving the treatment. I feel such anger that she is having to go through the seemingly endless rounds of hospital visits, appointments, blood tests, scans, whatever treatment is considered best for her. Yes, she is feisty and will face this diagnosis with courage, humour and determination, but the sense of sheer unfairness is hard to shake off. It's her battle, but in a way it's my battle too, and it's the battle of everyone who has had a cancer dx. We bind together like some unregulated, unchartered army, shaking our helpless fists at this evil invader and giving up our bodies, our health and our autonomy to become the battleground on which the fight is played out between the medics and cancer.
I ask again - once you have had a cancer dx, do you ever really forget about it? Or is it there, lurking, making itself comfortable in the deepest recesses of your psyche, looking for that little chink in your equilibrium to squeeze itself back to the front of your consciousness, so that it once more becomes something that covers everything you do, everything you say, everything you feel with a patina of anxiety and fear?
Does this make me more anxious about my check-up next week? Yes, but I am trying to remain sensible and calm, reminding myself that each cancer is different, my cancer was in a totally different part of the body and a totally different kind, that my general health is good and other comforting, pat-yourself-down phrases. In the meantime, I just have to carry on as normal - much the same as my friend is trying to do.
Well, if it's wrong, I still find myself doing it. I'm not wishing cancer on anyone else - why would I want anyone else to experience the stomach-sinking dread that a cancer diagnosis brings, the painful and harrowing physical side-effects of treatment and the emotional freefall that cancer gifts to you? But oh, sometimes I just want to shake people and say "Don't you realise the risks you are taking with your health?".
I used to feel like this a lot when I was first diagnosed and probably for about a year after, but the feelings have abated - until yesterday, when a friend phoned to tell me that she has just been diagnosed with cancer for the second time. This is a woman who has never smoked or drunk and who has looked after her health as best she can. She was diagnosed with breast cancer five years ago. endured the treatment and was heading towards her five year clear milestone when wallop! she gets a diagnosis of skin cancer. Skin cancer, in a woman who never sunbathes and has always been cautious about exposing her skin to the burning effects of the sun. The sheer injustice of it feels overwhelming for me, so what it must be like for her, I can only guess. This friend was incredibly helpful and supportive to me last year when I was facing my dx and treatment, with all the uncertainties, fears and emotions that it brought me - she was able to speak not only as someone who has dealt with cancer, but also as a radiographer, with professional experience of giving the treatment. I feel such anger that she is having to go through the seemingly endless rounds of hospital visits, appointments, blood tests, scans, whatever treatment is considered best for her. Yes, she is feisty and will face this diagnosis with courage, humour and determination, but the sense of sheer unfairness is hard to shake off. It's her battle, but in a way it's my battle too, and it's the battle of everyone who has had a cancer dx. We bind together like some unregulated, unchartered army, shaking our helpless fists at this evil invader and giving up our bodies, our health and our autonomy to become the battleground on which the fight is played out between the medics and cancer.
I ask again - once you have had a cancer dx, do you ever really forget about it? Or is it there, lurking, making itself comfortable in the deepest recesses of your psyche, looking for that little chink in your equilibrium to squeeze itself back to the front of your consciousness, so that it once more becomes something that covers everything you do, everything you say, everything you feel with a patina of anxiety and fear?
Does this make me more anxious about my check-up next week? Yes, but I am trying to remain sensible and calm, reminding myself that each cancer is different, my cancer was in a totally different part of the body and a totally different kind, that my general health is good and other comforting, pat-yourself-down phrases. In the meantime, I just have to carry on as normal - much the same as my friend is trying to do.
Friday, 5 October 2012
The constants in my life
Flashback - September 2011. I am one week post-radiotherapy and sinking to a new low, both physically and mentally. I can't eat without being sick, my neck is bleeding, my mouth is painfully dry, I feel sore, I am exhausted. What better thing to do, then, than go to a black tie dinner? It sounds mad, but this was no ordinary black tie dinner - this was the CIPFA South East Summer School, an event so dear to my heart and where I have made some of my closest friends, so not going wasn't an option, really. I blogged abbut it at the time, about how bittersweet it was to be there, feeling lousy, looking at my worst (although gratifyingly skinny, for the first time in my adult life!) but surrounded by the love and support of some wonderful people.
Come back now to 2012 and this year's Summer School, where I was able to play a full part - I had energy, I had enthusiasm and I felt like a different person (albeit not quite as skinny as last year!). I can't describe just how wonderful it felt to be part of it all again, not sitting as an invalid, unable to do anything, not even to eat. I might not have stayed up as late as I would have BC, but I'm still recovering fitness and stamina, so that ought to improve. For me, one of the major things is that I didn't feel as self-conscious about my face as I did last year, or even a few months or weeks ago. I confess to a touch of nervousness on the eve and morning of my departure for Summer School, but - as ever - my lovely husband told me I look great and that there is no need to worry. Of course, he was right. I genuinely don't look nearly as obviously different as I used to (although it's noticeable when I talk or smile an open-mouthed smile) and, in any case, I was going to be with friends. Most of the delegates at Summer School were people I knew and any newcomers would hopefully be as accepting as my friends were.
And so it proved to be. We had chosen Facial Palsy UK (the new, about-to-be-launched charity I am involved with, providing support to people with facial palsy) as the charity we would support during summer school. This is a practice we introduced a few years ago and it has allowed us to support a range of charities to the tune of several hundred pounds each year. I made a brief speech about the charity and why it was so important for people like me, with our wonky faces, difficulties in eating, drinking and speaking and our inability often to express emotions and take a full part in social interaction. I feel so honoured that, over the course of two days and with a small delegate group (the recession bites again!), we managed to raise over £400 - a magnificent amount, and I am so grateful for the generosity of our delegates.
One of the challenges for a fledgling charity is that no one really knows about it, so we have to publicise it at every opportunity. A couple of months ago, I emailed the Chief Executive of the hospital where I received my diagnosis, had my surgery, physio, speech therapy, eye operation etc etc to say how impressed I was with the treatment and care I had. To cut a long story short, I was invited to be interviewed for a BBC South East local affairs programme, to be broadcast either later this month or in October. After exchanging emails with the journalist, we arranged a date for me to be interviewed at the hospital. Who knows how much of what I said will end up on the cutting-room floor, but I managed to get in some mentions of Facial Palsy UK, which I hope will help raise the profile of our charity. For those of you who can receive BBC South East, the programme is called "Inside Out" and the feature is around cancer care in the area.
Neil and I had 9 days in Spain, at the end of September. We had intended to do lots of walking, climbing and generally be very active, but in the end, we did far less than expected and just relaxed instead. I know, hold the front page! We did still manage a 36 km bike ride and a couple of long walks, but mostly we pottered around, enjoying the pueblos blancos, the tapas and the manana approach to life. We ended with two days in Seville, arriving just as they had their first rain following 7 months of dry sunshine. It wasn't just any old rain, it was torrential rain - we had to go back to our (very charming, quaint) hotel twice on the first day to change out of our sodden clothes and warm up in the bath and shower! Still, we managed to see most of what we wanted to see, including a flamenco show. Ever been to one? The dancing was what I expected, but the singing - oh my! That was a bit unexpected..very guttural, no obvious link between the beat of the guitarist, the singer and the hand-clapping and very LOUD - which I suppose it has to be to be heard over the stamping feet of the dancers! We really enjoyed it, after the initial surprise at the vocal element.
And so back to Britain and more rain...at least now we are well and truly in autumn now, I can wear boots at every opportunity. This, to my mind, is one of the few good things about living in a temperate climate where the seasons change. I get to wear boots.
This week has included an appointment with my speech therapist. She has given me permission to stop zapping - yay! No more electrodes and shocks for an hour every evening. Instead, I have more massage exercises and a specific exercise to help me with my "whistle" - pursing the lips. I mentioned to the therapist that I hated not being able to kiss properly - when your mouth doesn't purse properly (that sounds a bit weird!), effectively you become a passive participant when someone kisses your mouth. Also, it is harder to spit (I'm not a gobber, but you do need to spit when you clean your teeth and I find it quite difficult!) and, as I discovered at Summer School, I can't blow bubbles with a bubble wand either (it was all in the cause of our group presentation, honest!). It's a reminder that things still aren't back to how they were BC and they're never going to be. However, I have to continue to work at what I can to get maximum improvement.
And so to today, and my first visit to the gym in several weeks. I really need to start being more disciplined again about my exercise regime, especially as the weather is now of the kind that is likely to pull my mood down. I am not good with rainy, overcast, dull days and it looks as if we are in for quite a lot of them. I was disappointed not to get a place in the ballot for the London Marathon next year (again. I never have any luck in the ballot) as I was hoping to run for Facial Palsy UK. I think I will support instead, although some people are trying to persuade me to run Brighton marathon instead. I think I might pass on that one!
Check-up at the Marsden in two weeks and already I can feel some slight anxiety, which I know will increase as I get closer to my appointment. Three months feels like an awful long time for things to go wrong, but I need to try and be more trusting in the medics and their judgement that I don't need to be seen more often. I do trust them, but these niggling, anxious little voices just keep whispering in my ear and it's not always easy to silence them.
To end on a happy note - last night, I attended the book launch for "Grace Under Pressure", an account of how running helped Sophie Walker deal with her daughter's Aspergers and what it's like to live with a child with Aspergers, with all the challenges, difficulties and delights it brings. I was Sophie's babysitter when I was a student and her parents and younger sisters were both there (I babysat one of her sisters too) - and, in one of those weird coincidences, I ended up working for the man who is now Sophie's husband a few years ago, without knowing anything about their relationship until it emerged during a conversation worthy of a Ionesco play!. It was great to meet up with her family again. Although I saw her parents, Dave and Lesley, a couple of years ago, we hadn't met since my somewhat tumultuous 2011 and I hadn't seen her younger sister, Cathy, for nigh on 30 years, although we are in touch through Facebook. I felt a warm glow, talking to them all (and no, don't blame it on the wine, because I was drinking water!).
Family, friends, exercise - three constants in my life.
Come back now to 2012 and this year's Summer School, where I was able to play a full part - I had energy, I had enthusiasm and I felt like a different person (albeit not quite as skinny as last year!). I can't describe just how wonderful it felt to be part of it all again, not sitting as an invalid, unable to do anything, not even to eat. I might not have stayed up as late as I would have BC, but I'm still recovering fitness and stamina, so that ought to improve. For me, one of the major things is that I didn't feel as self-conscious about my face as I did last year, or even a few months or weeks ago. I confess to a touch of nervousness on the eve and morning of my departure for Summer School, but - as ever - my lovely husband told me I look great and that there is no need to worry. Of course, he was right. I genuinely don't look nearly as obviously different as I used to (although it's noticeable when I talk or smile an open-mouthed smile) and, in any case, I was going to be with friends. Most of the delegates at Summer School were people I knew and any newcomers would hopefully be as accepting as my friends were.
And so it proved to be. We had chosen Facial Palsy UK (the new, about-to-be-launched charity I am involved with, providing support to people with facial palsy) as the charity we would support during summer school. This is a practice we introduced a few years ago and it has allowed us to support a range of charities to the tune of several hundred pounds each year. I made a brief speech about the charity and why it was so important for people like me, with our wonky faces, difficulties in eating, drinking and speaking and our inability often to express emotions and take a full part in social interaction. I feel so honoured that, over the course of two days and with a small delegate group (the recession bites again!), we managed to raise over £400 - a magnificent amount, and I am so grateful for the generosity of our delegates.
One of the challenges for a fledgling charity is that no one really knows about it, so we have to publicise it at every opportunity. A couple of months ago, I emailed the Chief Executive of the hospital where I received my diagnosis, had my surgery, physio, speech therapy, eye operation etc etc to say how impressed I was with the treatment and care I had. To cut a long story short, I was invited to be interviewed for a BBC South East local affairs programme, to be broadcast either later this month or in October. After exchanging emails with the journalist, we arranged a date for me to be interviewed at the hospital. Who knows how much of what I said will end up on the cutting-room floor, but I managed to get in some mentions of Facial Palsy UK, which I hope will help raise the profile of our charity. For those of you who can receive BBC South East, the programme is called "Inside Out" and the feature is around cancer care in the area.
Neil and I had 9 days in Spain, at the end of September. We had intended to do lots of walking, climbing and generally be very active, but in the end, we did far less than expected and just relaxed instead. I know, hold the front page! We did still manage a 36 km bike ride and a couple of long walks, but mostly we pottered around, enjoying the pueblos blancos, the tapas and the manana approach to life. We ended with two days in Seville, arriving just as they had their first rain following 7 months of dry sunshine. It wasn't just any old rain, it was torrential rain - we had to go back to our (very charming, quaint) hotel twice on the first day to change out of our sodden clothes and warm up in the bath and shower! Still, we managed to see most of what we wanted to see, including a flamenco show. Ever been to one? The dancing was what I expected, but the singing - oh my! That was a bit unexpected..very guttural, no obvious link between the beat of the guitarist, the singer and the hand-clapping and very LOUD - which I suppose it has to be to be heard over the stamping feet of the dancers! We really enjoyed it, after the initial surprise at the vocal element.
And so back to Britain and more rain...at least now we are well and truly in autumn now, I can wear boots at every opportunity. This, to my mind, is one of the few good things about living in a temperate climate where the seasons change. I get to wear boots.
This week has included an appointment with my speech therapist. She has given me permission to stop zapping - yay! No more electrodes and shocks for an hour every evening. Instead, I have more massage exercises and a specific exercise to help me with my "whistle" - pursing the lips. I mentioned to the therapist that I hated not being able to kiss properly - when your mouth doesn't purse properly (that sounds a bit weird!), effectively you become a passive participant when someone kisses your mouth. Also, it is harder to spit (I'm not a gobber, but you do need to spit when you clean your teeth and I find it quite difficult!) and, as I discovered at Summer School, I can't blow bubbles with a bubble wand either (it was all in the cause of our group presentation, honest!). It's a reminder that things still aren't back to how they were BC and they're never going to be. However, I have to continue to work at what I can to get maximum improvement.
And so to today, and my first visit to the gym in several weeks. I really need to start being more disciplined again about my exercise regime, especially as the weather is now of the kind that is likely to pull my mood down. I am not good with rainy, overcast, dull days and it looks as if we are in for quite a lot of them. I was disappointed not to get a place in the ballot for the London Marathon next year (again. I never have any luck in the ballot) as I was hoping to run for Facial Palsy UK. I think I will support instead, although some people are trying to persuade me to run Brighton marathon instead. I think I might pass on that one!
Check-up at the Marsden in two weeks and already I can feel some slight anxiety, which I know will increase as I get closer to my appointment. Three months feels like an awful long time for things to go wrong, but I need to try and be more trusting in the medics and their judgement that I don't need to be seen more often. I do trust them, but these niggling, anxious little voices just keep whispering in my ear and it's not always easy to silence them.
To end on a happy note - last night, I attended the book launch for "Grace Under Pressure", an account of how running helped Sophie Walker deal with her daughter's Aspergers and what it's like to live with a child with Aspergers, with all the challenges, difficulties and delights it brings. I was Sophie's babysitter when I was a student and her parents and younger sisters were both there (I babysat one of her sisters too) - and, in one of those weird coincidences, I ended up working for the man who is now Sophie's husband a few years ago, without knowing anything about their relationship until it emerged during a conversation worthy of a Ionesco play!. It was great to meet up with her family again. Although I saw her parents, Dave and Lesley, a couple of years ago, we hadn't met since my somewhat tumultuous 2011 and I hadn't seen her younger sister, Cathy, for nigh on 30 years, although we are in touch through Facebook. I felt a warm glow, talking to them all (and no, don't blame it on the wine, because I was drinking water!).
Family, friends, exercise - three constants in my life.
Tuesday, 11 September 2012
On birthdays, Paralympians and ordinary things...
How do you celebrate your birthday when the previous year, you wondered if you would even still be alive to mark the occasion? Without wishing to sound too melodramatic, it is true that, for large parts of 2011, I wasn't sure if I would be around in a year's time and couldn't visualise anything after Christmas 2011. Now that my planning horizons are slowly extending, I am beginning, in a very small way, to think that maybe, just maybe, I can look further ahead than the next three-monthly check up.
On my birthday last year, I was on the descent towards my lowest point, both physically and emotionally. I remember feeling that I was surrounded by love and good wishes, with cards galore and very generous presents. I know that I was extremely tired and unable to go out to do anything to celebrate. Our good friends came round with a birthday cake, baked by Sally. I managed two mouthfuls before promptly (and painfully) bringing them back up. This is no reflection on the cake, but on the difficulties I was having at the time eating and keeping food down.
Fast forward a year and it's a different world. Birthday celebrations started the day before, with a trip to London with Amy. We spent hours in Oxford Street, shopping for clothes, then lunching before going to a matinee performance of Blood Brothers as my birthday present from her. I remember Adam going to see this when he was at school and he had thoroughly enjoyed it, so my expectations were high. I wasn't disappointed, although I think I got more out of it than Amy did! I just love musical theatre - there's something about the smell and atmosphere in any theatre, no matter its size or age, that makes me a little bit giddy. I think that this year I have been to the theatre more often than any other year of my life; last week's outing is the 6th time I have been to a performance this year.
I had texted my old uni friend, Fin, to see if he was able to meet up for a quick drink after the performance and luckily he was free, so we enjoyed some rather lovely champagne (thanks, Fin!) as an early birthday treat. Champagne (or Cava, or Prosecco) is still the only alcoholic drink I can in any way tolerate and enjoy, so it was a real treat for me.
And so to Friday, my birthday. Weeks, or even months, ago, when Neil asked what I wanted to do for my birthday, I decided that I wanted to go to the Paralympics. So that is what we did - the tickets had been pinned up on the notice-board in the kitchen for weeks, along with the travel-cards (how generous of London 2012 to provide travel-cards!) and I had stockpiled union flags, union flags on sticks to wave, headbands with union flags, union flag hats and - piece de resistance - a glittery union flag face tattoo! Oh yes, we were going to be exuberantly patriotic!!
What can I say about the day? We have been watching the Paralympics with increasing awe and sense of humility, after having watched as much of the main Olympics as we could. To be there, in the Olympic Park and then the Stadium was the most incredibly exciting experience. It's a magnificent structure, for a start - seeing it on television doesn't prepare you for the sense of wonder you feel when you walk into the Park and see that incredible stadium rising from the ground. To be in there, with the cauldron blazing, a real buzz of excitement all around and then to see these amazing athletes give their all made the hairs on the back of my neck stand up. I can think of few things more moving than seeing the determination of athletes who have not only dedicated themselves to training to become the best in the world, but who have done this while dealing with an impairment which has disabled them. I am finding it hard to think of the right words to describe how I felt when I watched these sportsmen and women. I just know that going to the Paralympics, with the three people I love most in the world, was the perfect way for me to celebrate being alive.
Okay, enough of the melodrama! What happened next? Well, it was time to take Adam back to university and see just what kind of accommodation he had sorted out for himself (he and the two girls he is sharing with had organised it all before the end of term and we hadn't had any involvement at all). With the memory of the shabby, neglected and insecure house in which Amy spent her second year in my mind, I was prepared to find it a bit on the run-down side of respectable. We were very pleasantly surprised to find that they have managed to get themselves a very nice flat, beautifully furnished and decorated, with very friendly landlords and everything they need (including a dishwasher - blimey!). I remember when we dropped Amy off at her house that I just burst into tears when we left, thinking of her having to live in what seemed to me a lot like a hovel, so I was absolutely delighted that Adam is living in such a nice place. They even have a balcony (tiny!) and two huge sofas which I am sure are plenty big enough for me to sleep on (hint, hint...). We had been going to take Adam with us to Glasgow to visit my mum, but as one of his flatmates was at the flat, we said to him to stay and settle in. Neil and I drove off to Glasgow to spend the afternoon with my mum.
What can I say about that? Well, we all know that dementia is a cruel illness. It takes away the person you know and leaves someone who looks like them. While mum has moments of lucidity, much of the time she is talking about a landscape which bears no relation to reality. Apparently she works at the home where she lives and shares a room with a woman who is 200 years old. She wouldn't have it that it is physically not possible to be 200 years old, but eventually grudgingly conceded that maybe she was only 160! There are flashes of the old mum still there, and she seemed to save her moments of clarity for when she was talking to Neil on his own, when I was out of the room for a few moments, which makes me wonder whether she is more together than she seems and is exaggerating for my benefit - who knows? There's no doubt that she has dementia and the path she is following is unsteady and unchartered, for us at any rate. I managed to establish that she had received the birthday presents I had left for her on a previous visit - despite her protestations to the contrary. All the items were hanging up in her wardrobe or on her shelf, so that was one mystery solved at any rate.
Neil and I then went back down to Cumbria and spent a couple of nights in the Lakes, staying in a bed and breakfast on a farm near Derwent Water. We did some walking on Sunday - can't remember the name of the hills we climbed but we spent a total of about six and a half hours walking at a reasonably steady pace. It was good to be out and exercising in the open air, watching the fell-runners (thin as whippets!) taking part in a local race.
And so back home yesterday. Neil and Amy are both at work today and I have been catching up on things for Facial Palsy UK (coming live to a charity box near you!) and doing the food shopping, laundry etc.
My life may seem somewhat mundane but you know what? That suits me just fine! All the time I can do ordinary things, the things we all take for granted, it means I am doing okay. It means I have energy and stamina. It means I have an interest in things. It means I can see a tomorrow.
On my birthday last year, I was on the descent towards my lowest point, both physically and emotionally. I remember feeling that I was surrounded by love and good wishes, with cards galore and very generous presents. I know that I was extremely tired and unable to go out to do anything to celebrate. Our good friends came round with a birthday cake, baked by Sally. I managed two mouthfuls before promptly (and painfully) bringing them back up. This is no reflection on the cake, but on the difficulties I was having at the time eating and keeping food down.
Fast forward a year and it's a different world. Birthday celebrations started the day before, with a trip to London with Amy. We spent hours in Oxford Street, shopping for clothes, then lunching before going to a matinee performance of Blood Brothers as my birthday present from her. I remember Adam going to see this when he was at school and he had thoroughly enjoyed it, so my expectations were high. I wasn't disappointed, although I think I got more out of it than Amy did! I just love musical theatre - there's something about the smell and atmosphere in any theatre, no matter its size or age, that makes me a little bit giddy. I think that this year I have been to the theatre more often than any other year of my life; last week's outing is the 6th time I have been to a performance this year.
I had texted my old uni friend, Fin, to see if he was able to meet up for a quick drink after the performance and luckily he was free, so we enjoyed some rather lovely champagne (thanks, Fin!) as an early birthday treat. Champagne (or Cava, or Prosecco) is still the only alcoholic drink I can in any way tolerate and enjoy, so it was a real treat for me.
And so to Friday, my birthday. Weeks, or even months, ago, when Neil asked what I wanted to do for my birthday, I decided that I wanted to go to the Paralympics. So that is what we did - the tickets had been pinned up on the notice-board in the kitchen for weeks, along with the travel-cards (how generous of London 2012 to provide travel-cards!) and I had stockpiled union flags, union flags on sticks to wave, headbands with union flags, union flag hats and - piece de resistance - a glittery union flag face tattoo! Oh yes, we were going to be exuberantly patriotic!!
What can I say about the day? We have been watching the Paralympics with increasing awe and sense of humility, after having watched as much of the main Olympics as we could. To be there, in the Olympic Park and then the Stadium was the most incredibly exciting experience. It's a magnificent structure, for a start - seeing it on television doesn't prepare you for the sense of wonder you feel when you walk into the Park and see that incredible stadium rising from the ground. To be in there, with the cauldron blazing, a real buzz of excitement all around and then to see these amazing athletes give their all made the hairs on the back of my neck stand up. I can think of few things more moving than seeing the determination of athletes who have not only dedicated themselves to training to become the best in the world, but who have done this while dealing with an impairment which has disabled them. I am finding it hard to think of the right words to describe how I felt when I watched these sportsmen and women. I just know that going to the Paralympics, with the three people I love most in the world, was the perfect way for me to celebrate being alive.
Okay, enough of the melodrama! What happened next? Well, it was time to take Adam back to university and see just what kind of accommodation he had sorted out for himself (he and the two girls he is sharing with had organised it all before the end of term and we hadn't had any involvement at all). With the memory of the shabby, neglected and insecure house in which Amy spent her second year in my mind, I was prepared to find it a bit on the run-down side of respectable. We were very pleasantly surprised to find that they have managed to get themselves a very nice flat, beautifully furnished and decorated, with very friendly landlords and everything they need (including a dishwasher - blimey!). I remember when we dropped Amy off at her house that I just burst into tears when we left, thinking of her having to live in what seemed to me a lot like a hovel, so I was absolutely delighted that Adam is living in such a nice place. They even have a balcony (tiny!) and two huge sofas which I am sure are plenty big enough for me to sleep on (hint, hint...). We had been going to take Adam with us to Glasgow to visit my mum, but as one of his flatmates was at the flat, we said to him to stay and settle in. Neil and I drove off to Glasgow to spend the afternoon with my mum.
What can I say about that? Well, we all know that dementia is a cruel illness. It takes away the person you know and leaves someone who looks like them. While mum has moments of lucidity, much of the time she is talking about a landscape which bears no relation to reality. Apparently she works at the home where she lives and shares a room with a woman who is 200 years old. She wouldn't have it that it is physically not possible to be 200 years old, but eventually grudgingly conceded that maybe she was only 160! There are flashes of the old mum still there, and she seemed to save her moments of clarity for when she was talking to Neil on his own, when I was out of the room for a few moments, which makes me wonder whether she is more together than she seems and is exaggerating for my benefit - who knows? There's no doubt that she has dementia and the path she is following is unsteady and unchartered, for us at any rate. I managed to establish that she had received the birthday presents I had left for her on a previous visit - despite her protestations to the contrary. All the items were hanging up in her wardrobe or on her shelf, so that was one mystery solved at any rate.
Neil and I then went back down to Cumbria and spent a couple of nights in the Lakes, staying in a bed and breakfast on a farm near Derwent Water. We did some walking on Sunday - can't remember the name of the hills we climbed but we spent a total of about six and a half hours walking at a reasonably steady pace. It was good to be out and exercising in the open air, watching the fell-runners (thin as whippets!) taking part in a local race.
And so back home yesterday. Neil and Amy are both at work today and I have been catching up on things for Facial Palsy UK (coming live to a charity box near you!) and doing the food shopping, laundry etc.
My life may seem somewhat mundane but you know what? That suits me just fine! All the time I can do ordinary things, the things we all take for granted, it means I am doing okay. It means I have energy and stamina. It means I have an interest in things. It means I can see a tomorrow.
Wednesday, 5 September 2012
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
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
Subscribe to:
Posts (Atom)