Wednesday 22nd December
Well no chemo for me today. I have been coughing and spluttering since yesterday.
I called the chemo department and they told me that not only do I have a cold but my neutrophils are low again, probably as a result of my cold.
I have to keep an eye on my temperature, 35C degrees or below or 37.5C degrees or above and it's off to A & E for me.
So I will be having chemo on New Year's Eve instead!!! Consequently I shall definitely not be seeing in the New Year as I will be fast asleep. Hey Ho!
Still at least I can enjoy Christmas with my nearest and dearest.
Wednesday, 22 December 2010
Saturday, 18 December 2010
Side Effects and Stasis
Saturday 18th December
You will note that it's been nearly three weeks since my last update, this is because life is pretty much normal and repetitive, in a three kind of way!
Most of my side effects are to be honest irritating rather than debilitating.
Obviously my hair is falling out and although I have a distinct lack of body hair (my armpits are as smooth as the proverbial baby's bottom), the hair on my head is just getting thinner and thinner. If it stays like this I shall consider that I have got off very lightly. Mind you given the current Arctic weather, wearing a hat is actually a necessity to avoid complete brain freeze.
The most irksome of the side effects is the cardboard mouth, as I like to call it. Basically, everything I eat during the middle week of the 3 week cycle, tastes and feels like cardboard. Moreover this sensation remains even when I am not eating. A curious result of this is that I seem to want to eat more and more. I think that this is because whilst I am actually eating the taste and flavour of the food is "correct" but the moment I have swallowed what is in my mouth, the cardboard sensation returns with a vengeance.
Another, slightly more painfully side effect is the skin on the tips of my fingers and the soles of my feet has become very hard and consequently cracks and then bleeds, which is, at times, excruciatingly painful and feels like I am walking on needles. However, Hannah has attended to my feet and lavished huge quantities of cream and kindness upon them and this seems to be doing the trick. Sadly my fingers are still suffering and I think this is because I am constantly washing my hands and can't always put hand cream on.
With regard to stasis, I find I am constantly saying "I'll do that when I have finished my chemo". Although, clearly I am getting on with things, I find that a lot of stuff I am putting off until then. Mainly because trying to fit things in to the 3 week schedule, when one week I am knackered and one week I am infectable does tend to reduce the window of opportunity somewhat.
Still, come the middle of February I shall be the original gadabout and social butterfly.
You will note that it's been nearly three weeks since my last update, this is because life is pretty much normal and repetitive, in a three kind of way!
Most of my side effects are to be honest irritating rather than debilitating.
Obviously my hair is falling out and although I have a distinct lack of body hair (my armpits are as smooth as the proverbial baby's bottom), the hair on my head is just getting thinner and thinner. If it stays like this I shall consider that I have got off very lightly. Mind you given the current Arctic weather, wearing a hat is actually a necessity to avoid complete brain freeze.
The most irksome of the side effects is the cardboard mouth, as I like to call it. Basically, everything I eat during the middle week of the 3 week cycle, tastes and feels like cardboard. Moreover this sensation remains even when I am not eating. A curious result of this is that I seem to want to eat more and more. I think that this is because whilst I am actually eating the taste and flavour of the food is "correct" but the moment I have swallowed what is in my mouth, the cardboard sensation returns with a vengeance.
Another, slightly more painfully side effect is the skin on the tips of my fingers and the soles of my feet has become very hard and consequently cracks and then bleeds, which is, at times, excruciatingly painful and feels like I am walking on needles. However, Hannah has attended to my feet and lavished huge quantities of cream and kindness upon them and this seems to be doing the trick. Sadly my fingers are still suffering and I think this is because I am constantly washing my hands and can't always put hand cream on.
With regard to stasis, I find I am constantly saying "I'll do that when I have finished my chemo". Although, clearly I am getting on with things, I find that a lot of stuff I am putting off until then. Mainly because trying to fit things in to the 3 week schedule, when one week I am knackered and one week I am infectable does tend to reduce the window of opportunity somewhat.
Still, come the middle of February I shall be the original gadabout and social butterfly.
Friday, 3 December 2010
Half Way There!
Wednesday 1st December
This must be the first time that I felt worse going in than coming out!
My appointment was at mid-day and I developed a really grotty headache during the morning. It was also freezing cold, so I felt extremely sorry for myself as I went in.
Fortunately my neutrophils were up to 5.14 so the chemotherapy went ahead.
I did not, however, use the cold cap. I was cold enough already. My hair is really quite thin and I suspect I would have had to be treated for hypothermia if I had gone ahead with it.
The department was quite cold due to the freezing weather so fan heaters were drafted in from all over the place. So by the time I was half way through I was getting quite warm, especially as I had the heat pad on my arm as well.
Just as I was finishing the hospital suffered a power cut. No doubt caused by all and sundry plugging in every heater they could lay their hands on. Now much of a problem for the chemotherapy unit, but I suspect a bit of bind for those in the operating theatres and the ICU! Fortunately the power was back on fully within about 10 minutes.
The after effects were much less than previously. I was quite tired and went to bed at 7pm but I have not thrown up - hooray! So I suspect that the after effects of the cold cap may be more than just reducing hair loss.
I am considerably less tired than before. Using my trek to the paper shop as my tiredness barometer and given the weather is less than clement, I feel pretty good although very cold. Mind you I'm probably not the only one!!!
This must be the first time that I felt worse going in than coming out!
My appointment was at mid-day and I developed a really grotty headache during the morning. It was also freezing cold, so I felt extremely sorry for myself as I went in.
Fortunately my neutrophils were up to 5.14 so the chemotherapy went ahead.
I did not, however, use the cold cap. I was cold enough already. My hair is really quite thin and I suspect I would have had to be treated for hypothermia if I had gone ahead with it.
The department was quite cold due to the freezing weather so fan heaters were drafted in from all over the place. So by the time I was half way through I was getting quite warm, especially as I had the heat pad on my arm as well.
Just as I was finishing the hospital suffered a power cut. No doubt caused by all and sundry plugging in every heater they could lay their hands on. Now much of a problem for the chemotherapy unit, but I suspect a bit of bind for those in the operating theatres and the ICU! Fortunately the power was back on fully within about 10 minutes.
The after effects were much less than previously. I was quite tired and went to bed at 7pm but I have not thrown up - hooray! So I suspect that the after effects of the cold cap may be more than just reducing hair loss.
I am considerably less tired than before. Using my trek to the paper shop as my tiredness barometer and given the weather is less than clement, I feel pretty good although very cold. Mind you I'm probably not the only one!!!
Tuesday, 30 November 2010
Wig Trimming - This is not a euphemism!
Tuesday 30th November
So I went to get my wig trimmed today.
Just getting there has been a bit of a struggle, it took a few attempts to get a mutually convenient appointment, mainly because everything seems to happen at the same time. Then to top it off the weather decided to snow. Fortunately not enough to stop me and more importantly the hairdresser from getting to our destination.
Anyway, Karen is the Trevor Sorbie trained wig trimmer. (See previous post regarding the charity My New Hair) and a top professional she is too. Not only did she thin out my wig brilliantly but she also tidied up what is left of my hair.
Overall I am highly impressed with not only Karen but also Trevor Sorbie for starting up and running this very needed charity. Apparently, wigs in general have 40% too much hair. Still I suppose that it is easier to thin it out than add more in.
However, I'm not entirely convinced that Karen is actually a real hairdresser because at no point did she ask me where I was going for my holidays!!!
Tomorrow, all being well I will attempt to have my third round of chemotherapy. I can only hope that my neurphils are up to scratch.
So I went to get my wig trimmed today.
Just getting there has been a bit of a struggle, it took a few attempts to get a mutually convenient appointment, mainly because everything seems to happen at the same time. Then to top it off the weather decided to snow. Fortunately not enough to stop me and more importantly the hairdresser from getting to our destination.
Anyway, Karen is the Trevor Sorbie trained wig trimmer. (See previous post regarding the charity My New Hair) and a top professional she is too. Not only did she thin out my wig brilliantly but she also tidied up what is left of my hair.
Overall I am highly impressed with not only Karen but also Trevor Sorbie for starting up and running this very needed charity. Apparently, wigs in general have 40% too much hair. Still I suppose that it is easier to thin it out than add more in.
However, I'm not entirely convinced that Karen is actually a real hairdresser because at no point did she ask me where I was going for my holidays!!!
Tomorrow, all being well I will attempt to have my third round of chemotherapy. I can only hope that my neurphils are up to scratch.
Wednesday, 24 November 2010
What's worse that chemotherapy?
Wednesday 24th November
Answer: Not having chemotherapy!
Apparently my neurophils are not up to muster.
They were 1.22 yesterday and today are 1.35 they need to be 1.50.
So I have to to back next week instead.
Possibly the most annoying aspect of this is that the path lab used to do the blood count while the nurse waited, usually about 10minutes or so. But now the manager of the lab has decided that this is no longer possible and the wait is now about 1 hour. So I sat with my IV dripping saline twiddling my thumb (couldn't do both as my right hand was tied up!) until the very apologetic nurse came with my test results.
Had I been able to have my chemotherapy this would have put everyone back by about 1 hour. Clearly this is what happened on my first visit as I had to wait about 1 hour after my appointment until they could deal with me.
No doubt the manager of the path lab has improved the path lab's service for everyone's benefit!
Answer: Not having chemotherapy!
Apparently my neurophils are not up to muster.
They are the most abundant type of white blood cell and can kill and ingest bacteria.
They were 1.22 yesterday and today are 1.35 they need to be 1.50.
So I have to to back next week instead.
Possibly the most annoying aspect of this is that the path lab used to do the blood count while the nurse waited, usually about 10minutes or so. But now the manager of the lab has decided that this is no longer possible and the wait is now about 1 hour. So I sat with my IV dripping saline twiddling my thumb (couldn't do both as my right hand was tied up!) until the very apologetic nurse came with my test results.
Had I been able to have my chemotherapy this would have put everyone back by about 1 hour. Clearly this is what happened on my first visit as I had to wait about 1 hour after my appointment until they could deal with me.
No doubt the manager of the path lab has improved the path lab's service for everyone's benefit!
Saturday, 13 November 2010
Tedium, Wigs, Free Prescriptions, Pregnancy...
Saturday 13th November
You will note that my posts are currently few and far between. This is because chemotherapy is a very tedious three week Groundhog Day.
My whole life is dictated by the three phases of chemotherapy.
Week One - ill and tired.
Week Two - avoid the great unwashed for fear of contracting some quite ordinary disease for which I have no immunity.
Week Three - almost back to normal, ready to start the whole process again!
My hair is starting to fall out although it still looks relatively normal, but it is getting very thin and that wind sure does whistle around my head. As a consequence of this development I have decided to dispense with the cold cap which is heavy, cold (obviously!) and generally a bit of an endurance exercise. So I am looking at having a bald Christmas, maybe I'll write a song...
Anyway, since my hair is falling out I have looked again with renewed depression at my "lovely" free wig. The main problem with it is that it has way too much hair. So having seen an article in The Mail on Sunday, You magazine I looked at Trevor Sorbie's website. He has started up a charity called My New Hair which deals with medical hair loss in that he has trained hairdressers around the country to style wigs so that they are a little more presentable. Fortunately there is a lady in Harrow who does this so I will let you know how I get on.
For your information here is the website. www.mynewhair.org
I also learned that because I have cancer I am entitled to free prescriptions. I filled in FP92 form at my doctors, they complete the rest of it and send it off. Ten days later I have my exemption card which lasts for 5 years. This covers all prescriptions not just those associated with cancer, which is nice.
As for pregnancy, no I am not pregnant, but I find that chemotherapy is similar to being pregnant in that, it is constantly there, it occupies my every waking moment, even when I am feeling relatively normal. Like pregnancy, however much I might wish to, I cannot "give" it to someone else for a while and have time off. Still unlike pregnancy this will last only 4 months and will not result in a little financial sponge which sucks all my money out off my wallet!
You will note that my posts are currently few and far between. This is because chemotherapy is a very tedious three week Groundhog Day.
My whole life is dictated by the three phases of chemotherapy.
Week One - ill and tired.
Week Two - avoid the great unwashed for fear of contracting some quite ordinary disease for which I have no immunity.
Week Three - almost back to normal, ready to start the whole process again!
My hair is starting to fall out although it still looks relatively normal, but it is getting very thin and that wind sure does whistle around my head. As a consequence of this development I have decided to dispense with the cold cap which is heavy, cold (obviously!) and generally a bit of an endurance exercise. So I am looking at having a bald Christmas, maybe I'll write a song...
Anyway, since my hair is falling out I have looked again with renewed depression at my "lovely" free wig. The main problem with it is that it has way too much hair. So having seen an article in The Mail on Sunday, You magazine I looked at Trevor Sorbie's website. He has started up a charity called My New Hair which deals with medical hair loss in that he has trained hairdressers around the country to style wigs so that they are a little more presentable. Fortunately there is a lady in Harrow who does this so I will let you know how I get on.
For your information here is the website. www.mynewhair.org
I also learned that because I have cancer I am entitled to free prescriptions. I filled in FP92 form at my doctors, they complete the rest of it and send it off. Ten days later I have my exemption card which lasts for 5 years. This covers all prescriptions not just those associated with cancer, which is nice.
As for pregnancy, no I am not pregnant, but I find that chemotherapy is similar to being pregnant in that, it is constantly there, it occupies my every waking moment, even when I am feeling relatively normal. Like pregnancy, however much I might wish to, I cannot "give" it to someone else for a while and have time off. Still unlike pregnancy this will last only 4 months and will not result in a little financial sponge which sucks all my money out off my wallet!
Saturday, 6 November 2010
Ding, ding! Seconds Out, Round Two!
Wednesday 3rd November
Well I had my second bout of chemotherapy on Wednesday. The cold cap was very cold. I think that might be because my hair is getting thinner although not very noticeably.
Having chemotherapy in the morning is preferable mainly because the feeling cr*ppy bit happens during the afternoon and evening allowing a reasonable night's sleep.
Once again I threw up copiously but felt better soon after, although eating dinner was a bit beyond me,so I had bread and water.
Overall I feel better this time than I did at this point after the first bout. Not quite as zonked but definitely a bit out of it.
I think that the worst bit is that I do feel tired but simply cannot sleep very well. So I have a near constant feeling of fatigue. Still at least I am not feeling nauseous.
As for the other side effects such as constipation I have been taking Psyllium husks which should help, although it is akin to drinking sawdust mixed in water. So far I cannot say it has had any definite effect. Maybe I'll do a consumer report of "Things To Keep You Regular". Next up, dried apricots!
Well I had my second bout of chemotherapy on Wednesday. The cold cap was very cold. I think that might be because my hair is getting thinner although not very noticeably.
Having chemotherapy in the morning is preferable mainly because the feeling cr*ppy bit happens during the afternoon and evening allowing a reasonable night's sleep.
Once again I threw up copiously but felt better soon after, although eating dinner was a bit beyond me,so I had bread and water.
Overall I feel better this time than I did at this point after the first bout. Not quite as zonked but definitely a bit out of it.
I think that the worst bit is that I do feel tired but simply cannot sleep very well. So I have a near constant feeling of fatigue. Still at least I am not feeling nauseous.
As for the other side effects such as constipation I have been taking Psyllium husks which should help, although it is akin to drinking sawdust mixed in water. So far I cannot say it has had any definite effect. Maybe I'll do a consumer report of "Things To Keep You Regular". Next up, dried apricots!
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