Was up really early this morning, four thirty to be precise. I'd like to say it was because I got 'the call' but obviously not as I'm sitting here typing this.
Unable to sleep I staggered downstairs made myself a cuppa and settled down to watch some TV. The next thing I know is Peter delivering a hot cuppa and realising it was half past eight. Clearly not the most restful night ever.
I blame yesterday's lack of activity. Both of us feeling under the weather we stayed in, pulled the curtains and watched a film and crap TV, only taking time out to fetch another snack or drink from the kitchen. I grazed on raspberries, blueberries and bananas, he on grapes, crisps and Bombay mix. Despite the coughing, sneezing and wheezing it was just nice to spend a day doing nothing together.
This morning we are both feeling better, though both are still coughing for Wales, and have decided to brave Tesco. Well we had no choice really, we've eating all the treats and I really need more fruit. For me it is also a little test to give me some idea about my fitness for work on Monday. It is all very well saying you are feeling much better when you can still doze in front of the TV all day and your only activity it lifting the kettle. Sitting at a desk answering phone calls, making quick decisions and lasting for eight hours straight is an entirely different kettle of fish. For me a trip to Tesco is a good progress marker. Our local one is quite small so if I have to go around on my scooter I'm too ill for work. If I can make it using oxygen then I'm not quite there and need an extra day or two. And if I make it around on my own two feet then I'll probably be OK. Not exactly scientific but it works for me.
I braved the scales this morning and found I'd only dropped a pound in weight so that cheered me up too. My appetite continues to improve and yesterday's fry up of fried bread, egg, bacon and beans really hit the spot. Sometimes you need to be really naughty to give yourself a lift. Today's effort is a bit better, barbecue chicken with peppers and rice, but I'm also planning a raid on the treacle puddings, can't get enough of them at the moment. Another reason for the Tesco trip.
I am 'twitchy' at the moment. I have that feeling that something is going to happen soon and it is a feeling I cannot shake.
On Tuesday I hit my fifty third birthday. This is an age every doctor I've seen since 2007 has assured me I would not reach. At forty seven I was told I'd be unlikely to reach fifty. At fifty I was told I would not make fifty two without a transplant and yet here I am, days from fifty three and still kicking. Everything good or bad always happens to me around my birthday. I'm nearly always poorly on my birthday for instance, though it looks as though my timing was out this year. On my fifty second birthday I was in work, again getting over the remnants of a cold, when I get a frantic call from Papworth asking whether I could attend for assessment in an hour. I was originally given an appointment for the beginning of December so the call was completely out of the blue. I did baulk at going to be honest, I've spent far too many birthdays in hospital. However, having been rejected by Harefield I just couldn't bare the wait to find out my fate at Papworth so agreed. Despite spending my birthday being poked, prodded and having enough blood removed to feel faint it was well worth it. The following day I was given a tentative 'yes' provided the surgeon agreed to the risk. Six weeks later I saw the surgeon, a lovely man, who talked me through all the risks and agreed the transplant could go ahead. I was so relieved and excited I did a little dance in the waiting room, which of course nearly killed me. Three days later I was officially on the list.
I remember leaving the hospital. having signed all the consent forms, with a feeling of expectation. I was convinced I'd be back in there in a week or two and would be spending my next birthday, this birthday, climbing Snowdon.
Since my last birthday my world has fallen apart on several occasions, most recently this week, but each time I pick myself up and dust myself down and just keep going. Sadly each time it gets a little harder, a little more difficult and one day I won't be able too do it anymore. My current medication is beginning to be less effective. The new medication is more or less the same stuff but the dosage will be increased slightly with the hope that the downward slide will be slowed or hopefully halted. However the clock is ticking and it is ticking a few seconds faster each day. Dear God, please let this birthday be a good one.
Unable to sleep I staggered downstairs made myself a cuppa and settled down to watch some TV. The next thing I know is Peter delivering a hot cuppa and realising it was half past eight. Clearly not the most restful night ever.
This morning we are both feeling better, though both are still coughing for Wales, and have decided to brave Tesco. Well we had no choice really, we've eating all the treats and I really need more fruit. For me it is also a little test to give me some idea about my fitness for work on Monday. It is all very well saying you are feeling much better when you can still doze in front of the TV all day and your only activity it lifting the kettle. Sitting at a desk answering phone calls, making quick decisions and lasting for eight hours straight is an entirely different kettle of fish. For me a trip to Tesco is a good progress marker. Our local one is quite small so if I have to go around on my scooter I'm too ill for work. If I can make it using oxygen then I'm not quite there and need an extra day or two. And if I make it around on my own two feet then I'll probably be OK. Not exactly scientific but it works for me.
I am 'twitchy' at the moment. I have that feeling that something is going to happen soon and it is a feeling I cannot shake.
On Tuesday I hit my fifty third birthday. This is an age every doctor I've seen since 2007 has assured me I would not reach. At forty seven I was told I'd be unlikely to reach fifty. At fifty I was told I would not make fifty two without a transplant and yet here I am, days from fifty three and still kicking. Everything good or bad always happens to me around my birthday. I'm nearly always poorly on my birthday for instance, though it looks as though my timing was out this year. On my fifty second birthday I was in work, again getting over the remnants of a cold, when I get a frantic call from Papworth asking whether I could attend for assessment in an hour. I was originally given an appointment for the beginning of December so the call was completely out of the blue. I did baulk at going to be honest, I've spent far too many birthdays in hospital. However, having been rejected by Harefield I just couldn't bare the wait to find out my fate at Papworth so agreed. Despite spending my birthday being poked, prodded and having enough blood removed to feel faint it was well worth it. The following day I was given a tentative 'yes' provided the surgeon agreed to the risk. Six weeks later I saw the surgeon, a lovely man, who talked me through all the risks and agreed the transplant could go ahead. I was so relieved and excited I did a little dance in the waiting room, which of course nearly killed me. Three days later I was officially on the list.
I remember leaving the hospital. having signed all the consent forms, with a feeling of expectation. I was convinced I'd be back in there in a week or two and would be spending my next birthday, this birthday, climbing Snowdon.
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