Wednesday, March 21, 2012
Cycling
Just a quick note to get that miserable post off the top ... happy to say that despite a couple of cancelled plans I am increasing my ability to cycle on the flat and Mr K and B have both been on rides around here with me in the last 8 days ... In fact I have clocked up more than 100 miles in two weeks, which is good for March.
Friday, March 02, 2012
SHIT
I had planned to go to the gym for a body balance class last night, but I had to stay in because I was hit by one of my on-going living with bowel-cancer hours .... which basically means I cannot walk away from the loo for an hour or more ... it's shit ... literally.
I have had bowel cancer and it is SHIT. Do not read this if you are squeamish cos this is a TOO MUCH INFORMATION posting ...
I can never forget it about my bowel cancer because I am now living without a substantial chunk of a vital part of my body and the way my gut works is never going to be normal, it is always unpredicatable, and often difficult.
I guess I am lucky in that the on-going impact of having a very short gut with no rectum and no ileo-cecal valve does not often interfere with my plans .. but this is mainly because I am at home so much, or not doing things which are dependant on precise timings ... or things which only need an hour or more of my time, so when my gut goes on one of its spasms I am usually close by the toilet and there is no-one else to notice me running in and out of the loo for an hour or more.
I am writing this as a record because, well, just because I don't bang on about it doesn't mean I am not permenantly managing a difficult personal problem . Sometimes have to cancel my plans to stay by a toilet ... it is not a very visible disability, but it certainly IS a disability ... and it limits my freedom in many small ways ... the most obvious one being that I can never plan a meal out in the evening that will take me far from home, because I cannot drive any distance after an evening meal. I have to be by the loo. Quickly and urgently. In fact driving any distance at all at any time can be a bit nerve-wracking. Luckily there are times when it is calm for a few hours at a time .... just I never know in advacne when these hours will be!
IF I cannot get to a loo quickly enough I can, and do, soil myself. Real shit and real cleaning up to do. In fact this can happen at anytime, especially in the night. Talking of in the night, I rarely get a full night's sleep because I always have to get up to SHIT as many as 6 or 7 times a night ... sometimes with time in between and sometimes in a spasmy almost continuous sequence .. or cluster. Sometimes I think the cluster has finished, and I am tired and cold and keen to stay in bed and that is the most likely time to soil myself ... cos by the end of a sequence it is more wet and windy, but still SHIT and I cannot always tell one from the other.
I can only go cycling because I am resolved not to worry if I need to shit by the road-side. That is a massive taboo to over-come but if I was not prepared to do that I would not be able to go out on my bike again, and I don't want that to happen.
I can only go to the cinema or the theatre if I can get a seat on the end of a row and am prepared to miss the show because of being in the loo for most of it.
I can only go to French classes for two hours because I am prepared to keep dashing out of the class in front of all these people every week. That is to say nothing of the general vile smell of my wind which is also urgent and virtually uncontrollable... it smells worse than normal wind for varioius reasons, and in the small classroom I am always tense about my impact in the room! My poor long-suffering wife and friends know more than enough about this on-going problem.
In the summer it is hard to keep well-hydrated, cos loose stools and hot weather mean I am losing fluids and electrolytes quicker than I can replace them. Dehyrdration hurts. Hurts my head and makes me tired.
Yes, I DO take drugs to help, this is what it is like WITH the drug! Without it I have an almost consistent stream of loose SHIT streaming out of me. If I take too much immodium I will always get an explosive problem later with severe spasms and pain so there is tricky balance to be struck which is not as easy as it might sound.
I think I tend not to bother writing about this stuff generally .... but what made me think about it was someone asking about the side-effects of the chemo regimes I have had, and I went back through this blog to find out what it had been like for me, and was astonished to see how little I wrote about it, on either of the regimes I have had ... I know I sufffered with the chemo, but it seems I never went into detail apart from saying I was a abit sick or mentioning being tired ...
I guess I didn't want to dwell on it, and I am not sure if ppl want to read all that .. or all this either, of course ... but just for the record, just becaue it is not written doesn't mean I have not had difficulties along the way .. and continue to have difficulties ... just for the record ...
I have had bowel cancer and it is SHIT. Do not read this if you are squeamish cos this is a TOO MUCH INFORMATION posting ...
I can never forget it about my bowel cancer because I am now living without a substantial chunk of a vital part of my body and the way my gut works is never going to be normal, it is always unpredicatable, and often difficult.
I guess I am lucky in that the on-going impact of having a very short gut with no rectum and no ileo-cecal valve does not often interfere with my plans .. but this is mainly because I am at home so much, or not doing things which are dependant on precise timings ... or things which only need an hour or more of my time, so when my gut goes on one of its spasms I am usually close by the toilet and there is no-one else to notice me running in and out of the loo for an hour or more.
I am writing this as a record because, well, just because I don't bang on about it doesn't mean I am not permenantly managing a difficult personal problem . Sometimes have to cancel my plans to stay by a toilet ... it is not a very visible disability, but it certainly IS a disability ... and it limits my freedom in many small ways ... the most obvious one being that I can never plan a meal out in the evening that will take me far from home, because I cannot drive any distance after an evening meal. I have to be by the loo. Quickly and urgently. In fact driving any distance at all at any time can be a bit nerve-wracking. Luckily there are times when it is calm for a few hours at a time .... just I never know in advacne when these hours will be!
IF I cannot get to a loo quickly enough I can, and do, soil myself. Real shit and real cleaning up to do. In fact this can happen at anytime, especially in the night. Talking of in the night, I rarely get a full night's sleep because I always have to get up to SHIT as many as 6 or 7 times a night ... sometimes with time in between and sometimes in a spasmy almost continuous sequence .. or cluster. Sometimes I think the cluster has finished, and I am tired and cold and keen to stay in bed and that is the most likely time to soil myself ... cos by the end of a sequence it is more wet and windy, but still SHIT and I cannot always tell one from the other.
I can only go cycling because I am resolved not to worry if I need to shit by the road-side. That is a massive taboo to over-come but if I was not prepared to do that I would not be able to go out on my bike again, and I don't want that to happen.
I can only go to the cinema or the theatre if I can get a seat on the end of a row and am prepared to miss the show because of being in the loo for most of it.
I can only go to French classes for two hours because I am prepared to keep dashing out of the class in front of all these people every week. That is to say nothing of the general vile smell of my wind which is also urgent and virtually uncontrollable... it smells worse than normal wind for varioius reasons, and in the small classroom I am always tense about my impact in the room! My poor long-suffering wife and friends know more than enough about this on-going problem.
In the summer it is hard to keep well-hydrated, cos loose stools and hot weather mean I am losing fluids and electrolytes quicker than I can replace them. Dehyrdration hurts. Hurts my head and makes me tired.
Yes, I DO take drugs to help, this is what it is like WITH the drug! Without it I have an almost consistent stream of loose SHIT streaming out of me. If I take too much immodium I will always get an explosive problem later with severe spasms and pain so there is tricky balance to be struck which is not as easy as it might sound.
I think I tend not to bother writing about this stuff generally .... but what made me think about it was someone asking about the side-effects of the chemo regimes I have had, and I went back through this blog to find out what it had been like for me, and was astonished to see how little I wrote about it, on either of the regimes I have had ... I know I sufffered with the chemo, but it seems I never went into detail apart from saying I was a abit sick or mentioning being tired ...
I guess I didn't want to dwell on it, and I am not sure if ppl want to read all that .. or all this either, of course ... but just for the record, just becaue it is not written doesn't mean I have not had difficulties along the way .. and continue to have difficulties ... just for the record ...
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