Once again, I start my blog post by lamenting the fact that I have, once more, failed in my intention to post regularly. I do mean to post, but I seem to find that I run out of time and, combined with my rubbish memory, this results in me giving myself a (metaphorical) slap on the forehead and uttering a Homer Simpson-esque "Doh!" as I realise that I've failed in my blogging mission.
However, today I find myself in the lucky position of having time and having remembered - this may not be quite so lucky for you, having to read my meandering thoughts!
The coincidence of date - this came to mind on January 13th this year, when Neil, Adam and I were climbing Helvellyn in the Lake District. We had persuaded Adam to come out with us. He's not a natural climber and hasn't taken advantage of being on the edge of the beautiful Lake District by going out and exploring those glorious mountains, so we were really pleased we managed to get him out with us. Hopeful that our day would inspire him to get out and enjoy those hills, we set off in snow and with ice underfoot. For the first hour, he was not too happy but soon he began to enjoy it and was striding forth confidently. Unfortunately, on the way down, he strode forth a bit too confidently, slipped on some ice and landed heavily on his right arm. He had obviously done something to it, as he couldn't bend it and was quite clearly in some considerable pain, so after we got off the mountain, Adam drawing in his breath every time he stumbled on some rough ground and sometimes yelping with pain, we went straight to A & E at Carlisle Hospital. An x-ray later, we were told he might have a fracture at the elbow but it was hard to tell, so he was strapped up in a fetching blue velcro sling and told to return to the fracture clinic the next day. Luckily, it turned out not to be broken, just badly bruised!
January 13th? In 2012, I was having my monthly check-up at the Marsden, not yet officially in remission, and my consultant found a suspiciously soft gland. Long wait for an ultrasound scan and a week later I was told there was nothing wrong. Even so, it was enough to bring back those feelings of helplessness, uncertainty, fear and lack of control I had experienced for so much of 2011 for that week of waiting.
I think next January 13th, I shall remain indoors and encourage the rest of my family to do the same!!
I know, I know it's bad luck to be superstitious, but even so.....
In other news, I am still working two days a week in London - I have really enjoyed this piece of project work. It's been great to use my brain and to feel I am making a difference and I have really missed the office buzz, the conversations while waiting for the kettle to boil, the planning, decision making, thinking process and the opportunity to make suggestions. Two days a week feels about right to me - that, with my one day a week volunteering at the wonderful Orpheus Centre, is about all I have stamina for at the moment.
I find this lack of stamina quite disappointing. I had hoped that, by now, I would be much nearer the stamina levels I had before I got ill. My friend, who herself is in remission from cancer, had said to me right from the start that it would take two years or thereabouts to get back to similar levels, but I did hope I would get there a bit early! I guess I have to remember that it's only 17 months since that gruelling treatment finished and only about a year since I started eating properly again, so all in all, perhaps I'm not doing too badly. I just miss that sense of having energy to spare, that need to do something to use up the spare energy. Instead, I find myself falling asleep on the train home from work, having almost hallucinations in that half-asleep-half-awake state so that I wonder if I am in some strange parallel universe. I don't remember getting this tired before being ill. Will it get better? I am trying to do the right things. I eat healthily, I exercise regularly, I sleep as much as I can, I drink lots of water - what more can I do?
Still, I'm alive, I'm doing so much more than even 6 months ago and I have my wonderful family and friends giving me constant support. I hope they feel I am giving something back to them too.
Showing posts with label exercise. Show all posts
Showing posts with label exercise. Show all posts
Thursday, 21 February 2013
Friday, 16 November 2012
The one where we become official!!!
Sometimes weeks go by with nothing special happening, no events worthy of note, just ordinary, everyday life - nothing wrong with that! In fact, ordinary, everyday life is precious to me because I wasn't sure, during my darkest, illest days last year, whether I'd experience it again. Even today, I'm honestly not sure how many ordinary, everyday times I have ahead of me, but that's not something to dwell upon, is it?
This week hasn't been one of those ordinary weeks, though. Since blogging on Tuesday about my beloved Sodbury Slog, amongst other things, I have had quite an eventful few days, starting with Wednesday, when I had a follow-up appointment with my eye surgeon.
You'll remember that in July, I had my tarsorrhaphy reversed and my gold weight inserted. This was my follow-up appointment to see how things are going. We started with a sight test (20:20 or 6/6 as they seem to call it now) and the dreaded pressure test, although it wasn't the puff of air in the eye test they used to do. Instead they put stingy (as in they sting, not that they are mean!) eye drops in the eye to numb it and then measure the pressure of the eyeball with some little electronic contraption. All very high-tech. Anyway, the pressure was perfect so no signs of glaucoma. Then, time to see the specialist.
First I saw one of the junior staff - not sure of his grade, but I think he might have been a registrar. He has been specialising in eye surgery/conditions for 8 years so by my reckoning, he must be at least 30, but he looked as if he'd just left school! Definitely a function of my getting older, I think! I wanted to explain that my eyelid felt heavy and droopy, especially at night or when I read and am looking downwards. It's not that I am ungrateful for what's been done - anything but! - but I felt it better to say how I feel rather than pretend everything is fine. I explained all this to the doctor and he was very understanding and said I was right to say what I felt. He measured my eyes and confirmed my eyelid was droopy and also that my gold weight (aka "eyelid bling" - copyright me!) had moved from the centre of my eyelid into the inner corner of my upper eyelid. He thought this was something that could be remedied, so I had to wait to see the consultant, who always likes to discuss the cases with the other doctor and patient as part of his mentoring and coaching (how good is this hospital? They do things properly!). When I saw the consultant, the first thing he said, once I'd sat down, was "How do you feel? How are things for you?" and I explained about the heaviness and drooping eyelid and, once again, said I didn't want him to think I was being ungrateful after all his hard work. He reassured me that, to him, what's important is how the patient feels and that it's not his job to tell patients how they should feel but to work with them to get the best outcome. Phew! After some discussion and examination, the outcome is that he is going to pull the muscle forward from behind my eye and reposition my gold weight. Apparently, my blinking is better than about 90% or more of facial palsy patients he sees, with my eye closure at 100%, so pulling the muscle forwards should lift my eyelid and remove the droopiness. Yes, friends, I am having an eyelid lift, just like ageing celebrities have in an attempt to stave off the effects of gravity! And all on the NHS, too! He wants to do it in the next three months as he sees no point in waiting and wants me to feel better about how I look as soon as possible. I've had the pre-assessment already, so now I just have to wait for the date.
How lucky am I to be treated at this hospital? Yet again, I have been treated as a person whose opinion and feelings matter. I've not been talked down to, or talked over, I've been asked what I want the outcome to be. It's quite empowering to be told that your feelings are important in the medical decisions to be made.
I know how very lucky I am to have been treated at the Queen Victoria Hospital and it's really just because I happen to live in this area and I happened to be referred here last year for investigation into the lumps in my neck and it just happens to be the best place in the country for facial reconstructive surgery and associated procedures. Not everyone is as lucky, as is obvious from the statistics about access to treatment for patients with facial palsy. The average wait to access treatment is almost 6 years. 6 years!! - can you imagine living with all the functional difficulties, all the social anxieties and psychological damage facial palsy brings for nearly 6 years, thinking it will never change, never improve? Paralysis of the face brings social paralysis as well, I think. Self-confidence and self-esteem plummet, as I know from experience - and I was one of the lucky ones, with access to physical and psychological support at the earliest opportunity!
Which brings me to today, and the Press Launch of Facial Palsy UK. I've been involved, in a small way, with helping to set up this hugely important charity, the first in the UK dedicated to supporting people with facial palsy. The brainchild of Charles Nduka, my plastic surgeon, it's thanks to his vision and dedication, and that of a number of other health care specialists, including my lovely specialist speech therapist, that this day has arrived. I was one of six people with facial palsy who made short speeches to the assembled journalists, medics and other FP patients. I hadn't scripted anything, as I prefer to speak from the heart; it's more natural for me that way. I wanted to cover the psychological aspects of having FP, including the crippling lack of self-confidence. Well, I started speaking, I was fine, I was even joking about how I didn't look much like the photo on the screen of me before I developed FP - and then I started talking about how I had struggled with feelings of no self-confidence and that I had kept saying to Neil "Don't leave me, don't leave me" and that I felt ugly - that's when the tears started. I wanted to say that I mourn the face I've lost and that I miss it. I think I just about managed to blub the words out! It was a bit unexpected, but actually, it was probably the best thing I could have done, because it demonstrated very visibly the impact that FP has on people. For me, there's the double whammy aspect that I can't easily separate the FP from having had cancer, because whenever I look at my face, it reminds me that I only look like this because of that nasty, evil disease. It makes it hard to forget.
However, I would like to record my pride that I managed to make the journalists and the medics cry too! That's quite an achievement <beams lopsidedly with pride>. I had a nice chat with one of the professors during our tea break and he was very sweet about it, saying it was the best thing I could have done because it was obvious I spoke straight from the heart. In a "small world" moment, one of Amy's professors from uni was there - she is a professor of the psychology of visible difference and Amy did her dissertation on this - so I had a chat with her too. One of the questions during the Q&A session was asking how we dealt with the psychological aspects and I had spoken of the importance of returning to running and exercise and how it was about ticking another box in the checklist called "Normal", and the Amy's professor was in total agreement, so we had a good chat about that. I also had a photo opportunity with the very lovely Colin Salmon, whose wife has facial palsy. She is a trustee of the charity and he is a patron.
The media do seem to be picking up on facial palsy - we had someone on BBC Breakfast this morning, there was an article on Five Live, something on newsbeat and one of our members will be appearing in the Mail on Sunday shortly. This is all brilliant publicity for our charity but we need to continue to generate publicity - and funds! Having facial palsy isn't cosmetic - it's functional, it's emotional, it's psychological, it permeates all aspects of your life, sometimes in the most unexpected ways, like believing that you can't drive, which happened to me. This is not about looks-obsessed people wanting to look perfect. This is about being normal.
All of us today appreciated the support and love of our families and friends. I hope you all know this!
This week hasn't been one of those ordinary weeks, though. Since blogging on Tuesday about my beloved Sodbury Slog, amongst other things, I have had quite an eventful few days, starting with Wednesday, when I had a follow-up appointment with my eye surgeon.
You'll remember that in July, I had my tarsorrhaphy reversed and my gold weight inserted. This was my follow-up appointment to see how things are going. We started with a sight test (20:20 or 6/6 as they seem to call it now) and the dreaded pressure test, although it wasn't the puff of air in the eye test they used to do. Instead they put stingy (as in they sting, not that they are mean!) eye drops in the eye to numb it and then measure the pressure of the eyeball with some little electronic contraption. All very high-tech. Anyway, the pressure was perfect so no signs of glaucoma. Then, time to see the specialist.
First I saw one of the junior staff - not sure of his grade, but I think he might have been a registrar. He has been specialising in eye surgery/conditions for 8 years so by my reckoning, he must be at least 30, but he looked as if he'd just left school! Definitely a function of my getting older, I think! I wanted to explain that my eyelid felt heavy and droopy, especially at night or when I read and am looking downwards. It's not that I am ungrateful for what's been done - anything but! - but I felt it better to say how I feel rather than pretend everything is fine. I explained all this to the doctor and he was very understanding and said I was right to say what I felt. He measured my eyes and confirmed my eyelid was droopy and also that my gold weight (aka "eyelid bling" - copyright me!) had moved from the centre of my eyelid into the inner corner of my upper eyelid. He thought this was something that could be remedied, so I had to wait to see the consultant, who always likes to discuss the cases with the other doctor and patient as part of his mentoring and coaching (how good is this hospital? They do things properly!). When I saw the consultant, the first thing he said, once I'd sat down, was "How do you feel? How are things for you?" and I explained about the heaviness and drooping eyelid and, once again, said I didn't want him to think I was being ungrateful after all his hard work. He reassured me that, to him, what's important is how the patient feels and that it's not his job to tell patients how they should feel but to work with them to get the best outcome. Phew! After some discussion and examination, the outcome is that he is going to pull the muscle forward from behind my eye and reposition my gold weight. Apparently, my blinking is better than about 90% or more of facial palsy patients he sees, with my eye closure at 100%, so pulling the muscle forwards should lift my eyelid and remove the droopiness. Yes, friends, I am having an eyelid lift, just like ageing celebrities have in an attempt to stave off the effects of gravity! And all on the NHS, too! He wants to do it in the next three months as he sees no point in waiting and wants me to feel better about how I look as soon as possible. I've had the pre-assessment already, so now I just have to wait for the date.
How lucky am I to be treated at this hospital? Yet again, I have been treated as a person whose opinion and feelings matter. I've not been talked down to, or talked over, I've been asked what I want the outcome to be. It's quite empowering to be told that your feelings are important in the medical decisions to be made.
I know how very lucky I am to have been treated at the Queen Victoria Hospital and it's really just because I happen to live in this area and I happened to be referred here last year for investigation into the lumps in my neck and it just happens to be the best place in the country for facial reconstructive surgery and associated procedures. Not everyone is as lucky, as is obvious from the statistics about access to treatment for patients with facial palsy. The average wait to access treatment is almost 6 years. 6 years!! - can you imagine living with all the functional difficulties, all the social anxieties and psychological damage facial palsy brings for nearly 6 years, thinking it will never change, never improve? Paralysis of the face brings social paralysis as well, I think. Self-confidence and self-esteem plummet, as I know from experience - and I was one of the lucky ones, with access to physical and psychological support at the earliest opportunity!
Which brings me to today, and the Press Launch of Facial Palsy UK. I've been involved, in a small way, with helping to set up this hugely important charity, the first in the UK dedicated to supporting people with facial palsy. The brainchild of Charles Nduka, my plastic surgeon, it's thanks to his vision and dedication, and that of a number of other health care specialists, including my lovely specialist speech therapist, that this day has arrived. I was one of six people with facial palsy who made short speeches to the assembled journalists, medics and other FP patients. I hadn't scripted anything, as I prefer to speak from the heart; it's more natural for me that way. I wanted to cover the psychological aspects of having FP, including the crippling lack of self-confidence. Well, I started speaking, I was fine, I was even joking about how I didn't look much like the photo on the screen of me before I developed FP - and then I started talking about how I had struggled with feelings of no self-confidence and that I had kept saying to Neil "Don't leave me, don't leave me" and that I felt ugly - that's when the tears started. I wanted to say that I mourn the face I've lost and that I miss it. I think I just about managed to blub the words out! It was a bit unexpected, but actually, it was probably the best thing I could have done, because it demonstrated very visibly the impact that FP has on people. For me, there's the double whammy aspect that I can't easily separate the FP from having had cancer, because whenever I look at my face, it reminds me that I only look like this because of that nasty, evil disease. It makes it hard to forget.
However, I would like to record my pride that I managed to make the journalists and the medics cry too! That's quite an achievement <beams lopsidedly with pride>. I had a nice chat with one of the professors during our tea break and he was very sweet about it, saying it was the best thing I could have done because it was obvious I spoke straight from the heart. In a "small world" moment, one of Amy's professors from uni was there - she is a professor of the psychology of visible difference and Amy did her dissertation on this - so I had a chat with her too. One of the questions during the Q&A session was asking how we dealt with the psychological aspects and I had spoken of the importance of returning to running and exercise and how it was about ticking another box in the checklist called "Normal", and the Amy's professor was in total agreement, so we had a good chat about that. I also had a photo opportunity with the very lovely Colin Salmon, whose wife has facial palsy. She is a trustee of the charity and he is a patron.
The media do seem to be picking up on facial palsy - we had someone on BBC Breakfast this morning, there was an article on Five Live, something on newsbeat and one of our members will be appearing in the Mail on Sunday shortly. This is all brilliant publicity for our charity but we need to continue to generate publicity - and funds! Having facial palsy isn't cosmetic - it's functional, it's emotional, it's psychological, it permeates all aspects of your life, sometimes in the most unexpected ways, like believing that you can't drive, which happened to me. This is not about looks-obsessed people wanting to look perfect. This is about being normal.
All of us today appreciated the support and love of our families and friends. I hope you all know this!
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....
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, 10 April 2012
Just over half of Seven Sisters....
It's been a fairly quiet week since my last blog. That's not a bad thing, actually, since I was pretty busy the previous week, with shopping, wedding, gym etc and this week is starting to get more filled, so it was probably good to have a bit of a lull.
I took my glam frock to be altered so that I don't trip over it when I am at the Olivier Awards (oh, have I mentioned I am going to those? I'm sure I must have, a few times at least.....!). The rest of the week was spent doing domestic stuff, chatting to Adam about uni and just pottering around. I have discovered a great talent for pottering around over the last few months. I can while away most of the day doing a bit of tidying here, some cleaning there, a little light dusting over there, a bit of reading, catching up with missed episodes of Corrie - it's easy to fill the time!
The only thing we had planned for Easter was to go walking on Saturday with our friend Jonathan. We have done a lot of walks with him over the years (he climbed Kili with us and has climbed various other big hills with Neil) and had arranged this a few weeks ago. We drove down to his house and then on to Seaford, where we started our walk. We did 18 miles (a bit more distance once you factor in the elevations), including four of the Seven Sisters - hence the title of this post! We had to take off our boots and socks and roll up our trouser legs to cross the river. I believe the water was what you would call "bracing" - we called it flipping freezing (one of those words may have been sanitised for public consumption....).
Our walk included a pub lunch, a cup of tea in Alfriston and coffee and a hot cross bun back at Jonathan's house, so we were in no danger of going thirsty or hungry. Back home by about 9 o'clock and both of us were pretty tired by our day. I also had a little blister on the pad of my big toe - this is officially Not Good, as I need to get rid of it before VLM day, so I had to prick it (apologies to those of you with needle phobias, but sometimes it's the only thing to be done!).
On Sunday, I was reading at church and had also arranged to make an announcement before the start of the service asking for sponsorship for VLM. People were so generous and I raised another few hundred pounds, so I am able to pass over a respectable amount of money to Macmillan Cancer Support. I am humbled and thankful for the generosity of so many people, not just in terms of financial support for Macmillan, but for practical and emotional support over the past year and continuing now, as I start to gear up for the start of work on my face, beginning with my first Botox treatment next month. I tell you, I am going to end up looking younger than my peers :-)
I arrived home from church and my baby brother had arrived - he is visiting us for a few days. We don't get many opportunities to spend time together, so it's great having some time to chat or just sit watching Who Wants to be a Millionaire, which is what we're doing right now! We had a traditional Easter roast and were joined by the young lad whom our son is working 1-2-1 with this week. He is non-verbal autistic and an absolutely beautiful, delightful boy, even if he is very tiring and demanding to care for. It was good to have our family all together again for a meal, with the addition of my baby brother and this young lad.
We didn't really do anything on Easter Monday - weather pretty shabby, so a walk or bike ride were out of the question. We called round to see our friends, played with their puppy (no, not a euphemism) and then came home for a Quiet Night In.
Today, back to exercise - I have missed it over the past couple of days and, because I hadn't done a lot last week, was feeling a bit lardy. So, today I have been to the gym, a Zumba class and Pilates this evening. I feel much better for it too.
And so to now, and we are about to watch a programme on BBC2 about the Royal Marsden Hospital, where I was so well cared for last year. I'm not sure how easy the programme will be to watch, whether it will remind me of a difficult and distressing time, but I do feel it's important to watch it. They do wonderful work and it's good that people know about them.
I took my glam frock to be altered so that I don't trip over it when I am at the Olivier Awards (oh, have I mentioned I am going to those? I'm sure I must have, a few times at least.....!). The rest of the week was spent doing domestic stuff, chatting to Adam about uni and just pottering around. I have discovered a great talent for pottering around over the last few months. I can while away most of the day doing a bit of tidying here, some cleaning there, a little light dusting over there, a bit of reading, catching up with missed episodes of Corrie - it's easy to fill the time!
The only thing we had planned for Easter was to go walking on Saturday with our friend Jonathan. We have done a lot of walks with him over the years (he climbed Kili with us and has climbed various other big hills with Neil) and had arranged this a few weeks ago. We drove down to his house and then on to Seaford, where we started our walk. We did 18 miles (a bit more distance once you factor in the elevations), including four of the Seven Sisters - hence the title of this post! We had to take off our boots and socks and roll up our trouser legs to cross the river. I believe the water was what you would call "bracing" - we called it flipping freezing (one of those words may have been sanitised for public consumption....).
Our walk included a pub lunch, a cup of tea in Alfriston and coffee and a hot cross bun back at Jonathan's house, so we were in no danger of going thirsty or hungry. Back home by about 9 o'clock and both of us were pretty tired by our day. I also had a little blister on the pad of my big toe - this is officially Not Good, as I need to get rid of it before VLM day, so I had to prick it (apologies to those of you with needle phobias, but sometimes it's the only thing to be done!).
On Sunday, I was reading at church and had also arranged to make an announcement before the start of the service asking for sponsorship for VLM. People were so generous and I raised another few hundred pounds, so I am able to pass over a respectable amount of money to Macmillan Cancer Support. I am humbled and thankful for the generosity of so many people, not just in terms of financial support for Macmillan, but for practical and emotional support over the past year and continuing now, as I start to gear up for the start of work on my face, beginning with my first Botox treatment next month. I tell you, I am going to end up looking younger than my peers :-)
I arrived home from church and my baby brother had arrived - he is visiting us for a few days. We don't get many opportunities to spend time together, so it's great having some time to chat or just sit watching Who Wants to be a Millionaire, which is what we're doing right now! We had a traditional Easter roast and were joined by the young lad whom our son is working 1-2-1 with this week. He is non-verbal autistic and an absolutely beautiful, delightful boy, even if he is very tiring and demanding to care for. It was good to have our family all together again for a meal, with the addition of my baby brother and this young lad.
We didn't really do anything on Easter Monday - weather pretty shabby, so a walk or bike ride were out of the question. We called round to see our friends, played with their puppy (no, not a euphemism) and then came home for a Quiet Night In.
Today, back to exercise - I have missed it over the past couple of days and, because I hadn't done a lot last week, was feeling a bit lardy. So, today I have been to the gym, a Zumba class and Pilates this evening. I feel much better for it too.
And so to now, and we are about to watch a programme on BBC2 about the Royal Marsden Hospital, where I was so well cared for last year. I'm not sure how easy the programme will be to watch, whether it will remind me of a difficult and distressing time, but I do feel it's important to watch it. They do wonderful work and it's good that people know about them.
Friday, 9 March 2012
Tuesday, 28 February 2012
My week - it's been a good one!
So much for my resolution to update this blog regularly - a week has gone by since I last wrote anything!
It's been a week filled with exercise, really - after trying Pilates last Tuesday (not a raging success; I felt as if it was all a bit too slow and not active enough for me), Amy and I trotted off to cardio-box, an exercise class based on (yes, you're there already) boxing! After the warm-up, we did about thirty minutes of shadow boxing, repeating arm movements and bouncing on our feet, ducking, etc. It was all going so well till we had to move our arms in double time while keeping our feet at the same pace That's when I got my feet and arms completely out of sync and ended up dancing in a vain attempt to copy the instructor and the rest of the class! At least it kept Amy amused, watching me pretending that what I was really doing was floating like a butterfly while stinging like a bee. We then worked our way round 10 stations, doing press-ups at one, tricep curls with weights at another, sit-ups etc and as part of this, we got the chance to don the boxing gloves and hit that punchbag. I found it much easier to co-ordinate my hand and legs when I was hitting something (watch out, Neil, when I want to practise my moves!). By the end of the class, I really felt as if I had worked harder than in any other class I've been to.
Thursday brought the excitement of a replacement hose for my Henry vacuum cleaner (you can tell my world has shrunk somewhat when a bit of plastic tubing gives rise to such heady pleasure). I'd like to point out that nothing in the previous sentence is a euphemism, by the way. Inspired by this foray into domestic excellence, I decided to bake some teabread. I was commenting to Neil this evening that I really enjoy being at home because I feel so much better now - while I was at home for most of last year, bar the first few months, for much of that time I felt so dreadful and weak that I couldn't enjoy it properly. Now, feeling stronger each week, I am loving the chance to cook at a more leisurely pace, to keep on top of housework, to free up weekends to spend with Neil, to be able to go to the gym and exercise classes during the day, to catch up with people and generally not to feel everything has to be crammed into Saturday and Sunday. That's not to say that I don't want to return to work - I do - but not full-time, since I think I need this balance and not to be at work every day to keep me fit and well, not just physically but mentally as well. I can see how easy it might be to get sucked back into that long hours culture and end up undoing all the good I am doing myself by focussing at the moment on getting fit and healthy.
Our weekend was a very sociable one. On Friday evening we were invited over to our friends', the Dodds, for supper and an evening playing board games. What fun! We played Old Maid, Pit, Qwirkle (yes, I have spelt that correctly!) and Chase the Ace. I'd forgotten how much enjoyment there is in playing simple games, no computer or fancy games console involved. We enjoyed it so much that first thing on Saturday, I ordered us Qwirkle and Pit from Amazon so we can do more of this kind of stuff at home. I really liked playing cribbage with Adam over Christmas and playing Jenga etc on Christmas Day. What was especially nice for me was that the last time we were over at the Dodds' house, I had no appetite and was terribly tired, but this time I was eating properly and had loads more energy, so we were able to stay until a respectable time (and I tucked away a respectable amount of food!).
On Saturday, our friends Steve and Gwen travelled up from their home in the New Forest to visit. Steve's back garden backed onto Neil's, so they have known each other since they were knee high to a beer bottle. We haven't seen them for a couple of years, so we had a lot of catching up to do. After lunch, we sat around chatting and, as often tends to happen, coming up with solutions to all the world's problems :-) They left in the early evening, which was perfect timing as I was aware that I would feel really tired the next day if I carried on talking for much longer (it's still the thing that makes me most tired, talking - ironic, eh?).
Sunday, after church, for some reason I started feeling a bit low. The sun was shining, so it wasn't weather-related, as often happens with me, so I think it was just a bit of a dip with no apparent cause. Neil spotted that I was a bit despondent and suggested I put my running gear on and went out for a run. After a bit of grumbling (I'll be too slow, I won't enjoy it, people will laugh, yada yada yada), I did as he suggested and went out for a run. I ran the same route I ran the previous week, didn't have any walk break and ended up shaving a few minutes off my time, so well done, Neil - you knew exactly what I needed to do, as I came home with a smile on my face and feeling much better. I am so lucky that I have found a medication that is totally natural and chemical-free - exercising helps me so much.
And so we come to Monday and the start of a new week. I popped next door to have a cuppa and a catch up with my neighbour and went into Redhill in the afternoon to sort out my mobile phone upgrade. I like to look at and feel the handsets, so need to go into the shop, not just do it online. One spanky new iPhone 4S and pair of trackie bottoms later, I returned home, a happy shopper. Legs, Bums and Tums with Amy last night as the first of this week's exercise classes - not sure I'm seeing much difference in any of those parts of my anatomy, but my stamina is good!
Today, Tuesday, I've spent a total of three hours at the gym, starting with an early morning session at half six with Neil. I had a really good, comfortable run on the treadmill and did lots of resistance work, squats, sit-ups etc. Later in the morning I had Zumba (always a feel-good class) and this evening I did Pilates. I'm glad to say that this evening I "got" Pilates - I felt much more at ease in the class and understood properly, not just conceptually, how valuable this kind of class will be to complement all the aerobic and active stuff I do. In fact, today, for the first time since last April, I almost managed to forget that I have been ill or that I have facial palsy. Apart from the fact that during some of the positions in Pilates I had to be careful of my shoulder and neck, I haven't been limited in any of the activities I've done today. I chatted to several people at Zumba and Pilates without feeling the need to explain (apologise for?) how I look. I think this is real progress for me and I hope tomorrow is the same. I do understand that it might not be as good as this every day, but just realising that I can feel like this at least once is really positive.
I am sitting here this evening feeling pretty good. I value the preciousness of life and the fact that I have a second chance at it. Maybe the realisation that I am in remission is finally starting to take effect. It may be that now it's starting to feel real and I can leave the limbo I have found myself in for so long. Whatever it is, I wish I could bottle it and then uncork it whenever I feel the need - and not just for me, but for others who need it. Wouldn't that be brilliant?
It's been a week filled with exercise, really - after trying Pilates last Tuesday (not a raging success; I felt as if it was all a bit too slow and not active enough for me), Amy and I trotted off to cardio-box, an exercise class based on (yes, you're there already) boxing! After the warm-up, we did about thirty minutes of shadow boxing, repeating arm movements and bouncing on our feet, ducking, etc. It was all going so well till we had to move our arms in double time while keeping our feet at the same pace That's when I got my feet and arms completely out of sync and ended up dancing in a vain attempt to copy the instructor and the rest of the class! At least it kept Amy amused, watching me pretending that what I was really doing was floating like a butterfly while stinging like a bee. We then worked our way round 10 stations, doing press-ups at one, tricep curls with weights at another, sit-ups etc and as part of this, we got the chance to don the boxing gloves and hit that punchbag. I found it much easier to co-ordinate my hand and legs when I was hitting something (watch out, Neil, when I want to practise my moves!). By the end of the class, I really felt as if I had worked harder than in any other class I've been to.
Thursday brought the excitement of a replacement hose for my Henry vacuum cleaner (you can tell my world has shrunk somewhat when a bit of plastic tubing gives rise to such heady pleasure). I'd like to point out that nothing in the previous sentence is a euphemism, by the way. Inspired by this foray into domestic excellence, I decided to bake some teabread. I was commenting to Neil this evening that I really enjoy being at home because I feel so much better now - while I was at home for most of last year, bar the first few months, for much of that time I felt so dreadful and weak that I couldn't enjoy it properly. Now, feeling stronger each week, I am loving the chance to cook at a more leisurely pace, to keep on top of housework, to free up weekends to spend with Neil, to be able to go to the gym and exercise classes during the day, to catch up with people and generally not to feel everything has to be crammed into Saturday and Sunday. That's not to say that I don't want to return to work - I do - but not full-time, since I think I need this balance and not to be at work every day to keep me fit and well, not just physically but mentally as well. I can see how easy it might be to get sucked back into that long hours culture and end up undoing all the good I am doing myself by focussing at the moment on getting fit and healthy.
Our weekend was a very sociable one. On Friday evening we were invited over to our friends', the Dodds, for supper and an evening playing board games. What fun! We played Old Maid, Pit, Qwirkle (yes, I have spelt that correctly!) and Chase the Ace. I'd forgotten how much enjoyment there is in playing simple games, no computer or fancy games console involved. We enjoyed it so much that first thing on Saturday, I ordered us Qwirkle and Pit from Amazon so we can do more of this kind of stuff at home. I really liked playing cribbage with Adam over Christmas and playing Jenga etc on Christmas Day. What was especially nice for me was that the last time we were over at the Dodds' house, I had no appetite and was terribly tired, but this time I was eating properly and had loads more energy, so we were able to stay until a respectable time (and I tucked away a respectable amount of food!).
On Saturday, our friends Steve and Gwen travelled up from their home in the New Forest to visit. Steve's back garden backed onto Neil's, so they have known each other since they were knee high to a beer bottle. We haven't seen them for a couple of years, so we had a lot of catching up to do. After lunch, we sat around chatting and, as often tends to happen, coming up with solutions to all the world's problems :-) They left in the early evening, which was perfect timing as I was aware that I would feel really tired the next day if I carried on talking for much longer (it's still the thing that makes me most tired, talking - ironic, eh?).
Sunday, after church, for some reason I started feeling a bit low. The sun was shining, so it wasn't weather-related, as often happens with me, so I think it was just a bit of a dip with no apparent cause. Neil spotted that I was a bit despondent and suggested I put my running gear on and went out for a run. After a bit of grumbling (I'll be too slow, I won't enjoy it, people will laugh, yada yada yada), I did as he suggested and went out for a run. I ran the same route I ran the previous week, didn't have any walk break and ended up shaving a few minutes off my time, so well done, Neil - you knew exactly what I needed to do, as I came home with a smile on my face and feeling much better. I am so lucky that I have found a medication that is totally natural and chemical-free - exercising helps me so much.
And so we come to Monday and the start of a new week. I popped next door to have a cuppa and a catch up with my neighbour and went into Redhill in the afternoon to sort out my mobile phone upgrade. I like to look at and feel the handsets, so need to go into the shop, not just do it online. One spanky new iPhone 4S and pair of trackie bottoms later, I returned home, a happy shopper. Legs, Bums and Tums with Amy last night as the first of this week's exercise classes - not sure I'm seeing much difference in any of those parts of my anatomy, but my stamina is good!
Today, Tuesday, I've spent a total of three hours at the gym, starting with an early morning session at half six with Neil. I had a really good, comfortable run on the treadmill and did lots of resistance work, squats, sit-ups etc. Later in the morning I had Zumba (always a feel-good class) and this evening I did Pilates. I'm glad to say that this evening I "got" Pilates - I felt much more at ease in the class and understood properly, not just conceptually, how valuable this kind of class will be to complement all the aerobic and active stuff I do. In fact, today, for the first time since last April, I almost managed to forget that I have been ill or that I have facial palsy. Apart from the fact that during some of the positions in Pilates I had to be careful of my shoulder and neck, I haven't been limited in any of the activities I've done today. I chatted to several people at Zumba and Pilates without feeling the need to explain (apologise for?) how I look. I think this is real progress for me and I hope tomorrow is the same. I do understand that it might not be as good as this every day, but just realising that I can feel like this at least once is really positive.
I am sitting here this evening feeling pretty good. I value the preciousness of life and the fact that I have a second chance at it. Maybe the realisation that I am in remission is finally starting to take effect. It may be that now it's starting to feel real and I can leave the limbo I have found myself in for so long. Whatever it is, I wish I could bottle it and then uncork it whenever I feel the need - and not just for me, but for others who need it. Wouldn't that be brilliant?
Sunday, 27 November 2011
Orcadian Strip the Willow - och aye the noo......
Sunday afternoon and it's already getting dark - I shall be so relieved when the days start lengthening again. I really dislike these short days and hate the day the clocks go back with a passion, because I know it leads to ever decreasing days and ever lengthening nights.
Since I last posted, I have had more friends round for lunch. On Friday, two friends I know from Runners World, Geves and Debs, came all the way down from the depths of Essex to visit me for a few hours. It was so good to see them and we had a great old chat and catch-up. I have been so grateful that so many friends have been willing to make the journey out to see me. I enjoy company, although I still feel a bit nervous and apprehensive before seeing friends for the first time since all this happened, because I do worry about what they will think when they see my different face. But after a few minutes, I think we all tend to forget about it, especially when we get stuck into a bit of gossip and a giggle!
I went to the gym again on Friday morning. As before, I took it slowly and steadily and did some lateral pull-downs to give my left shoulder a bit of physio. Although I was signed off by the physio a few months ago, I think I need to get into the habit of doing some regular stretches and exercises to try and regain/retain movement. I am convinced that exercise is going to be vital in dealing with my depression - even after just two gym sessions, I feel more positive and more as if I am returning to normal (albeit a different normal from before). Just doing something I used to enjoy doing before all this happened, even if I am doing it at a much lower level, makes me feel that fragments of my old life are falling back into place. By the time I see my GP to discuss my depression and possible treatments later this week, I hope to have done another couple of sessions at the gym, so I should be able to talk meaningfully with him about the value of exercise. However, if between us we decide that I need some additional help from medication, then so be it. I won't refuse out of pig-headedness but I want to be sure that the decision is reached after proper discussion.
Last night we had a Scottish evening at my church, with country dancing, songs, Burns poetry and a few other Caledonian gems. I had suggested this as a social event at the beginning of the year but then wasn't able to play much of a part in planning it all, but I did manage to get hold of some posters courtesy of VisitScotland and my friend Linda was brilliant and sent me loads of tartan ribbon and St Andrew's flags so I was i/c decoration on the day itself, which meant I could feel part of it without having to get really involved in cooking and serving food! I did make two trifles as my contribution to the repast, but they were pretty straightforward and quick to make. Neil helped set up all the tables and then helped dismantle everything at the end of the evening. Because we started at about half six, it meant we were home and flopped on the sofa before ten pm, which was very welcome! I feel very tired today, but that's probably because I was unable to resist the opportunity to do some Scottish dancing and got up a couple of times. Bit of a mistake, as I am weary now, but it was such fun and just felt so good to be doing something active and sociable.
I don't want to tempt fate by speaking too soon, but I really do feel that just over the last week or so, I have turned a bit of a corner and feel so much better than I have done for the past few months. I have more energy, both physically and mentally - I want to do things, to get involved with events and people. There's still that feeling of trepidation and self-consciousness about my face, but I think it's a good sign that I am getting involved in social things. We have our local Christmas shopping evening this Thursday, when all the shops stay open, the high street is closed to traffic and there's a great sense of excitement and Christmas anticipation. We always go along and see lots of our friends and this year will be no different, so I am looking forward to going to that (with the usual provisos!).
Anyway, I hope this positive feeling continues although I am realistic enough to know that there will still be dark moments ahead. I still need to learn to let go of this need to be always in control and always coping, but at the moment I am okay. One of the people I was talking to last night (she was in the dance group which did some demo Scottish dances for us, and I know her anyway but hadn't seen her since I was ill - clearly I don't know her that well!) - anyway, after that very rambling bit in parentheses, the point I wanted to make is that she is a doctor and was able to give me a bit of reassurance, in a very straightforward way, that it was extremely unlikely that cancer in the parotid gland would be a secondary cancer so the likelihood is that it is the primary (which has still never been confirmed!) and that I looked so much better than she would have expected me to look at this stage in my recovery. She also said we are absolutely right to push my consultant for a PET CT scan, to try and get the peace of mind Neil and I both feel we need. Another friend, who is an anaesthetist, also said we are right to push for this scan, so we feel comforted to know that we're not being unreasonable in asking the question.
I have another busy week this coming week, with friends coming for lunch on Monday, Tuesday and Wednesday. I also have my speech therapist on Tuesday (when I shall ask about how I can protect my facial muscles when running), GP on Thursday followed by dental hygienist at the Marsden, and another friend coming over on Friday afternoon. She has been through radiotherapy and chemo this year, so we can empathise with each other! Factor in the Christmas shopping evening and an attempt to get to the Open Day at the Orpheus Centre to see where Amy works, and it's a pretty full-on week! I am no longer feeling the need to have a rest during the day, so my energy levels must be increasing, given the way I seem to have become a Lady who Lunches :-)
Since I last posted, I have had more friends round for lunch. On Friday, two friends I know from Runners World, Geves and Debs, came all the way down from the depths of Essex to visit me for a few hours. It was so good to see them and we had a great old chat and catch-up. I have been so grateful that so many friends have been willing to make the journey out to see me. I enjoy company, although I still feel a bit nervous and apprehensive before seeing friends for the first time since all this happened, because I do worry about what they will think when they see my different face. But after a few minutes, I think we all tend to forget about it, especially when we get stuck into a bit of gossip and a giggle!
I went to the gym again on Friday morning. As before, I took it slowly and steadily and did some lateral pull-downs to give my left shoulder a bit of physio. Although I was signed off by the physio a few months ago, I think I need to get into the habit of doing some regular stretches and exercises to try and regain/retain movement. I am convinced that exercise is going to be vital in dealing with my depression - even after just two gym sessions, I feel more positive and more as if I am returning to normal (albeit a different normal from before). Just doing something I used to enjoy doing before all this happened, even if I am doing it at a much lower level, makes me feel that fragments of my old life are falling back into place. By the time I see my GP to discuss my depression and possible treatments later this week, I hope to have done another couple of sessions at the gym, so I should be able to talk meaningfully with him about the value of exercise. However, if between us we decide that I need some additional help from medication, then so be it. I won't refuse out of pig-headedness but I want to be sure that the decision is reached after proper discussion.
Last night we had a Scottish evening at my church, with country dancing, songs, Burns poetry and a few other Caledonian gems. I had suggested this as a social event at the beginning of the year but then wasn't able to play much of a part in planning it all, but I did manage to get hold of some posters courtesy of VisitScotland and my friend Linda was brilliant and sent me loads of tartan ribbon and St Andrew's flags so I was i/c decoration on the day itself, which meant I could feel part of it without having to get really involved in cooking and serving food! I did make two trifles as my contribution to the repast, but they were pretty straightforward and quick to make. Neil helped set up all the tables and then helped dismantle everything at the end of the evening. Because we started at about half six, it meant we were home and flopped on the sofa before ten pm, which was very welcome! I feel very tired today, but that's probably because I was unable to resist the opportunity to do some Scottish dancing and got up a couple of times. Bit of a mistake, as I am weary now, but it was such fun and just felt so good to be doing something active and sociable.
I don't want to tempt fate by speaking too soon, but I really do feel that just over the last week or so, I have turned a bit of a corner and feel so much better than I have done for the past few months. I have more energy, both physically and mentally - I want to do things, to get involved with events and people. There's still that feeling of trepidation and self-consciousness about my face, but I think it's a good sign that I am getting involved in social things. We have our local Christmas shopping evening this Thursday, when all the shops stay open, the high street is closed to traffic and there's a great sense of excitement and Christmas anticipation. We always go along and see lots of our friends and this year will be no different, so I am looking forward to going to that (with the usual provisos!).
Anyway, I hope this positive feeling continues although I am realistic enough to know that there will still be dark moments ahead. I still need to learn to let go of this need to be always in control and always coping, but at the moment I am okay. One of the people I was talking to last night (she was in the dance group which did some demo Scottish dances for us, and I know her anyway but hadn't seen her since I was ill - clearly I don't know her that well!) - anyway, after that very rambling bit in parentheses, the point I wanted to make is that she is a doctor and was able to give me a bit of reassurance, in a very straightforward way, that it was extremely unlikely that cancer in the parotid gland would be a secondary cancer so the likelihood is that it is the primary (which has still never been confirmed!) and that I looked so much better than she would have expected me to look at this stage in my recovery. She also said we are absolutely right to push my consultant for a PET CT scan, to try and get the peace of mind Neil and I both feel we need. Another friend, who is an anaesthetist, also said we are right to push for this scan, so we feel comforted to know that we're not being unreasonable in asking the question.
I have another busy week this coming week, with friends coming for lunch on Monday, Tuesday and Wednesday. I also have my speech therapist on Tuesday (when I shall ask about how I can protect my facial muscles when running), GP on Thursday followed by dental hygienist at the Marsden, and another friend coming over on Friday afternoon. She has been through radiotherapy and chemo this year, so we can empathise with each other! Factor in the Christmas shopping evening and an attempt to get to the Open Day at the Orpheus Centre to see where Amy works, and it's a pretty full-on week! I am no longer feeling the need to have a rest during the day, so my energy levels must be increasing, given the way I seem to have become a Lady who Lunches :-)
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