I was up bright and early this morning and I did a quick session of light weights at the gym (I stand on the flat side of a BOSU thingey, whilst doing high reps/light weight exercises) before heading off for hospital for my double chemo dose.
I was all set up with Sudoku and Killer Sodoku (mild only) plus lots of planned visits from friends.
White blood cell count was 0.7, which is a great fat FAIL. There's not a chance of chemo at that level. Ideally they like it above 1.5, but they will occasionally do it if you're more than 1.0. In view of the grief that I had from my last bone marrow jab, they're not giving me white cell booster jab.
So it's back next week.
However I feel very lucky. The chemo side-effects that I've heard about from my oncologist are tinnitus, peripheral neuritus, nausea, tiredness, reduced lung function and low white blood cell counts. I only seem to get the last three.
I'm actually quite pleased to get some proof that my chemo isn't a double-blind placebo; yes, these crazy thoughts do wander through my brain even though I know that it'd be a highly unethical course of action by the hospital. However, it does happen in the movies and we all know how accurate Hollywood is!
London Marathon this weekend so I'll be watching from the luxury of a very soft sofa.
Good to hear from you again Douglas, nice that you aren't getting all the possible side affects of the treatment. Keep smiling, and plump up the cushions for the marathon coverage!
Hi Doug, Im glad to hear your side effects from the chemo are not nearly as bad as they could be. I hope you enjoyed watching the marathon from the comfort of your sofa xxx
I have just read your posts after feeling sorry for myself after catching my third cold of the year and now feel very humbled.
You are a total inspiration! I want to wish you all the best in your recovery. If we all had just half of your PMA the world would be a much better place.
Today's the double dose day that I should have had last Thursday. So fingers crossed that I pass my blood test. If I fail, I'll ask for the horrid bone marrow jab; I'll question the doctor as to whether they'll agree to giving a half dose. In layman's terms half a dose equals half the pain, but the medical profession may have other ideas.
I also managed to get my on-line application in for London Marathon 2009 before they closed the website so I'm feeling rather pleased at my wisdom and foresight.
Hey Tilly P, I'm sorry about all your colds; maybe you've caught all the colds that I haven't got, in which case I thank you.
Am glad that you're doing well Douglas, and Lorra.
Its been a while but I vaguely remember being given the contact details of a place in Bristol that (i think) were like a cancer specialist hospital. I had some leaflets given to me by a friend that she had got from there and it listed all these supplements that they recommended patients to take to keep them strong. I remember spending at least £15 a month on selenium etc, but I never had a low count and never had to miss a chemo session. Don't know whether it was to do with all the supplements, but I wasn't a runner then and on the whole was quite unfit.
Hi Doug, Hope you made your next chemo. I also managed to enter the on-line ballot for FLM 2009 before it closed so fingers crossed. Managed to get an infection in spite of "normal" white blood cells so watched marathon on Sunday under duvet feeling very sorry for myself.
My next chemo, number 2 is on Monday. Do you have the white blood cell jab as a single dose or as a course of 5? I had them as a course of 5 but have asked for single dose and am now regretting decision - at least I could cope with course of 5 even though made me feel very shivery and as if I had flu.
Secondly and in answer to your question I had a single white blood cell jab on a Saturday. It was a tiny injection with a very small needle. I went away as happy as Larry whistling like a schoolboy.
On Sunday, Monday, Tuesday and Wednesday I continued to whistle.
On Thursday the pain started and the hospital provided pain-killers had marginal effect. It was a dull, nagging pain between my elbows and shoulders. On Saturday my GP gave me superior pain-killers (Tramadol), which had the desired effect, though some of the side-effects are not suitable for mentioning on a family forum (one of them was a male only side-effect so won't affect you).
Having said all this it wasn't awful, ghastly type awful. I put it at around 5-6 on a 0-10 misery scale and the second set of pain-killers did work.
Thirdly I try and maintain a germ-free life-style. I don't travel on public transport (luckily I'm self-employed and don't have to commute). I don't go to cinemas and other germ-laden environments. I am also very concious that most infections are caused by a transfer of germs from one's own hands to the mucous membranes of one's nostrils, eyes or mouth. Accordingly, if one can get into the habit of not touching one's face with one's hands, one's risk of infection is lower. Regular and thorough hand-washing is also a benefit.
All the very best with your treatment. Please keep posting on your progress.
It's now 48 hours after receiving my fifth double dose with half steroids. Still slightly twitchy, but nothing like before and nothing like the reaction that some people have to chemo.
White blood cell count was 2.8, which to my layman's mind, is an amazing leap from the 0.7 seven days earlier.
In theory this is my penultimate set. However last time I saw my oncologist I asked him about having an extra cycle for luck and he didn't exclude the possibility.
Good luck Lorra with your bone marrow jab and I hope it's going OK.
Tomorrow I'm off for my single dose. Fingers crossed about white blood cell count, but it was pretty high last week, which is a good start.
I started to have very strange mental problems shortly after my last post on the forum. For 3-4 days I suddenly became seriously over-anxious. I mean really, really over-anxious. Normal day to day routine problems, like 1/10 on the seriousness scale, suddenly became like Mount Everest. I then didn't sleep for the worry despite strong doses of sleeping pills. Funnily enough the one issue that I didn't worry about was my health!
It was all very strange and rather unpleasant.
Suddenly I returned to normal, dealt with the molehills and slept like a log.
So things are fine now and, with luck, in 15 hours timeI'll have finished my 5th cycle. I've made a mental note not to make any decisions after my double dose as I'm not of sound mind.
All the best and once again thanks for your support,
hope you are staying well folks, .........about that strange anxiety stuff Douglas. The brain is a funny thing. hope not too many unpleasant effects this time.
Wow! No chemo side effects, but vein problems yet again. I think I that I knocked the canula between blood test time and dose time. The chemo seemed to go in OK, but when the post-chemo saline was put on.....yow and wow.
The nurse de-canulered me and put a new canula in on the other (left) arm, but my right arm is now moderately sore despite liberal applications of Volterol and asprin. Anyway from past experience the pain will pass in a day or two.
Also interested to note that I'm now slightly anemic (10.7). This is a common side effect of chemo, but does explain why I get tired. I'm planning to eat entire herds of liver, spinach and red meat.
Survived second dose of chemo - They dosed me up on Lorezepam so cann't remember being sick - Progress. Chemo drugs went in OK but my arm still bruised and sore. Just got my white blood cell injections to go and 1/3 of the way there.
Went for a slow run today - as always good to be out and about. Makes me feel so much more positive. I am losing my hair very rapidly now. A bit upsetting when it first starts to fall out but becoming resigned to it now. I'm trying to look forward to the day it will all grow back!
Lorra - sorry to hear you are losing your hair and finding it upsetting - my sis had hers cut very very short and found it lasted better that way. Also it wasn't so surprising to others when it finally disappeared altogether.
I have'nt visited this thread in a while and have just caught up. It's really wonderful of you to share your experiences in such a positive and enlightening way.
I wish you both the very best on the road to recovery.
Comments
Hi folks,
I was up bright and early this morning and I did a quick session of light weights at the gym (I stand on the flat side of a BOSU thingey, whilst doing high reps/light weight exercises) before heading off for hospital for my double chemo dose.
I was all set up with Sudoku and Killer Sodoku (mild only) plus lots of planned visits from friends.
White blood cell count was 0.7, which is a great fat FAIL. There's not a chance of chemo at that level. Ideally they like it above 1.5, but they will occasionally do it if you're more than 1.0. In view of the grief that I had from my last bone marrow jab, they're not giving me white cell booster jab.
So it's back next week.
However I feel very lucky. The chemo side-effects that I've heard about from my oncologist are tinnitus, peripheral neuritus, nausea, tiredness, reduced lung function and low white blood cell counts. I only seem to get the last three.
I'm actually quite pleased to get some proof that my chemo isn't a double-blind placebo; yes, these crazy thoughts do wander through my brain even though I know that it'd be a highly unethical course of action by the hospital. However, it does happen in the movies and we all know how accurate Hollywood is!
London Marathon this weekend so I'll be watching from the luxury of a very soft sofa.
All the best,
Douglas
Hi DJ
I have just read your posts after feeling sorry for myself after catching my third cold of the year and now feel very humbled.
You are a total inspiration! I want to wish you all the best in your recovery. If we all had just half of your PMA the world would be a much better place.
Hey-ho, and off to chemo I go.
Today's the double dose day that I should have had last Thursday. So fingers crossed that I pass my blood test. If I fail, I'll ask for the horrid bone marrow jab; I'll question the doctor as to whether they'll agree to giving a half dose. In layman's terms half a dose equals half the pain, but the medical profession may have other ideas.
I also managed to get my on-line application in for London Marathon 2009 before they closed the website so I'm feeling rather pleased at my wisdom and foresight.
Hey Tilly P, I'm sorry about all your colds; maybe you've caught all the colds that I haven't got, in which case I thank you.
Thnks for your support folks.
Am glad that you're doing well Douglas, and Lorra.
Its been a while but I vaguely remember being given the contact details of a place in Bristol that (i think) were like a cancer specialist hospital. I had some leaflets given to me by a friend that she had got from there and it listed all these supplements that they recommended patients to take to keep them strong. I remember spending at least £15 a month on selenium etc, but I never had a low count and never had to miss a chemo session. Don't know whether it was to do with all the supplements, but I wasn't a runner then and on the whole was quite unfit.
Hi Doug, Hope you made your next chemo. I also managed to enter the on-line ballot for FLM 2009 before it closed so fingers crossed. Managed to get an infection in spite of "normal" white blood cells so watched marathon on Sunday under duvet feeling very sorry for myself.
My next chemo, number 2 is on Monday. Do you have the white blood cell jab as a single dose or as a course of 5? I had them as a course of 5 but have asked for single dose and am now regretting decision - at least I could cope with course of 5 even though made me feel very shivery and as if I had flu.
Hi Lorra,
Firstly, good luck with chemo 2.
Secondly and in answer to your question I had a single white blood cell jab on a Saturday. It was a tiny injection with a very small needle. I went away as happy as Larry whistling like a schoolboy.
On Sunday, Monday, Tuesday and Wednesday I continued to whistle.
On Thursday the pain started and the hospital provided pain-killers had marginal effect. It was a dull, nagging pain between my elbows and shoulders. On Saturday my GP gave me superior pain-killers (Tramadol), which had the desired effect, though some of the side-effects are not suitable for mentioning on a family forum (one of them was a male only side-effect so won't affect you).
Having said all this it wasn't awful, ghastly type awful. I put it at around 5-6 on a 0-10 misery scale and the second set of pain-killers did work.
Thirdly I try and maintain a germ-free life-style. I don't travel on public transport (luckily I'm self-employed and don't have to commute). I don't go to cinemas and other germ-laden environments. I am also very concious that most infections are caused by a transfer of germs from one's own hands to the mucous membranes of one's nostrils, eyes or mouth. Accordingly, if one can get into the habit of not touching one's face with one's hands, one's risk of infection is lower. Regular and thorough hand-washing is also a benefit.
All the very best with your treatment. Please keep posting on your progress.
Keep happy,
Douglas aka Leaping Wolf
It's now 48 hours after receiving my fifth double dose with half steroids. Still slightly twitchy, but nothing like before and nothing like the reaction that some people have to chemo.
White blood cell count was 2.8, which to my layman's mind, is an amazing leap from the 0.7 seven days earlier.
In theory this is my penultimate set. However last time I saw my oncologist I asked him about having an extra cycle for luck and he didn't exclude the possibility.
Good luck Lorra with your bone marrow jab and I hope it's going OK.
Thanks again for your help folks.
Glad to hear you are coping well Douglas.
Good luck Lorra.
Good that you are feeling better with this cycle Douglas.As for the extra one I,d go for the belt and braces approach.
Lorra good luck for Monday hope the side affects are mild.
kepp going you lovely people
xx
Hi folks,
Tomorrow I'm off for my single dose. Fingers crossed about white blood cell count, but it was pretty high last week, which is a good start.
I started to have very strange mental problems shortly after my last post on the forum. For 3-4 days I suddenly became seriously over-anxious. I mean really, really over-anxious. Normal day to day routine problems, like 1/10 on the seriousness scale, suddenly became like Mount Everest. I then didn't sleep for the worry despite strong doses of sleeping pills. Funnily enough the one issue that I didn't worry about was my health!
It was all very strange and rather unpleasant.
Suddenly I returned to normal, dealt with the molehills and slept like a log.
So things are fine now and, with luck, in 15 hours timeI'll have finished my 5th cycle. I've made a mental note not to make any decisions after my double dose as I'm not of sound mind.
All the best and once again thanks for your support,
Douglas
Best of luck today Douglas.
And look after yourself Lorra
hope you are staying well folks, .........about that strange anxiety stuff Douglas. The brain is a funny thing. hope not too many unpleasant effects this time.
best wishes
Wow! No chemo side effects, but vein problems yet again. I think I that I knocked the canula between blood test time and dose time. The chemo seemed to go in OK, but when the post-chemo saline was put on.....yow and wow.
The nurse de-canulered me and put a new canula in on the other (left) arm, but my right arm is now moderately sore despite liberal applications of Volterol and asprin. Anyway from past experience the pain will pass in a day or two.
Also interested to note that I'm now slightly anemic (10.7). This is a common side effect of chemo, but does explain why I get tired. I'm planning to eat entire herds of liver, spinach and red meat.
Thanks folks,
Douglas
Survived second dose of chemo - They dosed me up on Lorezepam so cann't remember being sick - Progress. Chemo drugs went in OK but my arm still bruised and sore. Just got my white blood cell injections to go and 1/3 of the way there.
Went for a slow run today - as always good to be out and about. Makes me feel so much more positive. I am losing my hair very rapidly now. A bit upsetting when it first starts to fall out but becoming resigned to it now. I'm trying to look forward to the day it will all grow back!
((((((Douglas and Lorra))))))
Glad that's another one off the list for you both. xxx
Inspired and moved by you both as always.
Lorra - sorry to hear you are losing your hair and finding it upsetting - my sis had hers cut very very short and found it lasted better that way. Also it wasn't so surprising to others when it finally disappeared altogether.
Thinking strong thoughts for you both.
xx
((((Douglas and Lorra))))
I have'nt visited this thread in a while and have just caught up. It's really wonderful of you to share your experiences in such a positive and enlightening way.
I wish you both the very best on the road to recovery.