I did some internet research tonight and found a paper that describes my apparent lack of symptoms combined with a low platelet count. I'll be speaking to the clinic tomorrow morning about it.
They say that too much information is a bad thing when you have no training or background to interpret it correctly, but speaking as someone who is intimately interested in the outcome, I'm going to find out as much as I can.
http://clltopics.org/Complications/ITP.htm
Tuesday, 29 June 2010
Tuesday 29th June
I went back to the hospital again this morning for another blood test and a consultation. It appears that my platelet count is still dropping and they don't know why. The white cells have responded to the injections I had last week and are back to normal.
I'm not sure what to make of it all. I'm feeling well enough to continue touring, subject to keeping rested and my throat infectection has cleared up. So I'll continue with the tour, starting tomorrow in Washington, Tyne & Wear. This weekend's shows are all local.
Next week would have been a good time to have my final dose of chemo, although there was some discussion as to whether I'd need it. However the low platelet count has put paid to any chemotherapy for a couple of weeks.
I now have to return to the clinic on Mon 19th July, with the possibility of starting treatment that afternoon. If that happens then I have to continue the course of chemo while I am away on tour in the North East, and I'm not looking forward to that at all.
Very strange.
I'm not sure what to make of it all. I'm feeling well enough to continue touring, subject to keeping rested and my throat infectection has cleared up. So I'll continue with the tour, starting tomorrow in Washington, Tyne & Wear. This weekend's shows are all local.
Next week would have been a good time to have my final dose of chemo, although there was some discussion as to whether I'd need it. However the low platelet count has put paid to any chemotherapy for a couple of weeks.
I now have to return to the clinic on Mon 19th July, with the possibility of starting treatment that afternoon. If that happens then I have to continue the course of chemo while I am away on tour in the North East, and I'm not looking forward to that at all.
Very strange.
Saturday, 26 June 2010
Saturday 26th June
The hot weather continues. I don't like prolongued spells above about 27c, but as the saying goes, mustn't grumble. It is after all, much better that the prolongued cold spell last winter, when temperatures struggled to get about zero.
I had another blood test yesterday and I saw the doctor. She said that my white blood cell count was improving but that the platelet count was still very low. I'm not sure what set that off. I've been carrying a throat/ear infection and mouth ulcers for the last week. Maybe there's something else underlying that.
The news is that I'm to finish the course of injections and then go back again on Tuesday for another blood test and consultation.
There is one change in the strategy. Last month they were talking about two further courses of chemotherapy, now they're hinting that I may not have/need the sixth. The doctor spoke about another bone marrow test and a CT scan in the next few weeks.
Nicki's tour continues apace. We're playing on Sunday and again on Wednesday. The gaps between the dates have worked in my favour. I have at least a day/night in between each show to recover. I'm feeling stronger as well. It still feels very strange not to be allowed to load the van and carry the gear in or out of the venues. I just read a book or the paper, and then set the kettle up and make everyone a cup of tea. It was so hot last night that I drank two mugs straight off before my thirst was quenched.
Ah, the rock and roll lifestyle!
I had another blood test yesterday and I saw the doctor. She said that my white blood cell count was improving but that the platelet count was still very low. I'm not sure what set that off. I've been carrying a throat/ear infection and mouth ulcers for the last week. Maybe there's something else underlying that.
The news is that I'm to finish the course of injections and then go back again on Tuesday for another blood test and consultation.
There is one change in the strategy. Last month they were talking about two further courses of chemotherapy, now they're hinting that I may not have/need the sixth. The doctor spoke about another bone marrow test and a CT scan in the next few weeks.
Nicki's tour continues apace. We're playing on Sunday and again on Wednesday. The gaps between the dates have worked in my favour. I have at least a day/night in between each show to recover. I'm feeling stronger as well. It still feels very strange not to be allowed to load the van and carry the gear in or out of the venues. I just read a book or the paper, and then set the kettle up and make everyone a cup of tea. It was so hot last night that I drank two mugs straight off before my thirst was quenched.
Ah, the rock and roll lifestyle!
Thursday, 24 June 2010
Thursday 24th June
I have to go back to the hospital in the morning for another blood test and to see my doctor. I've been injecting myself each day in order to stimulate production of white cells and tomorrow I'll find out how successful it's been.
Other than that, I've done my best to do as little as possible and rest up whenever I can. The tour is going really well. Check my other blog for details.
http://daveclemo-touringwithnicki.blogspot.com/
I've done four shows so far with two more this weekend. I'm enjoying it immensely and couldn't wish for anything else. I'm also treating each show as if it were my last. One day it may be.
I appreciate your prayers and emails of support, thank you so much.
Other than that, I've done my best to do as little as possible and rest up whenever I can. The tour is going really well. Check my other blog for details.
http://daveclemo-touringwithnicki.blogspot.com/
I've done four shows so far with two more this weekend. I'm enjoying it immensely and couldn't wish for anything else. I'm also treating each show as if it were my last. One day it may be.
I appreciate your prayers and emails of support, thank you so much.
Tuesday, 22 June 2010
Tuesday 22nd June
I went to the hospital yesterday to have a blood test and for a change the clinic was empty. Usually they're queued out of the door on a Monday morning. It must be the sunshine.
I then went to Dr Lyttleton's clinic and sat and read the paper until I was called.
It seems that I don't have any white blood cells at the moment. This is due to the ear/throat infection. I've been prescribed a course of injections to stimulate more white blood cells. I have to inject myself each day.
The upshot of all this is that I won't be having chemo until this infection is cleared up. I have to go back on Friday for another blood test and consultation. The doctor warned me that if my temperature exceeded 38c than I would have to be admitted to hospital while they treated the infection with antibiotics.
It goes without saying that I am monitoring my temperature constantly. It was very hot yesterday as we drove up to Widnes for the next stop on Nicki's tour. I stood back while they unloaded and loaded the van. That felt very strange as I'm normally very active.
We got home at about 4 this morning and I was awake at about 10.30.
My temperature is still "normal" but my back is giving me some real pain. I just can't get comfortable. My doctor said that I'd know when the injections kick in and I start to produce white blood cells because my joints will start to ache.
I don't think that this is what he meant.
We're back out on the road tomorrow (Wednesday) and again on Friday and Sunday. This gives me a day to recover.
I'm enjoying every moment of playing on stage. I wouldn't change this for the world. This is what I do. I just hope I can continue doing it for the remainder of the tour.
I then went to Dr Lyttleton's clinic and sat and read the paper until I was called.
It seems that I don't have any white blood cells at the moment. This is due to the ear/throat infection. I've been prescribed a course of injections to stimulate more white blood cells. I have to inject myself each day.
The upshot of all this is that I won't be having chemo until this infection is cleared up. I have to go back on Friday for another blood test and consultation. The doctor warned me that if my temperature exceeded 38c than I would have to be admitted to hospital while they treated the infection with antibiotics.
It goes without saying that I am monitoring my temperature constantly. It was very hot yesterday as we drove up to Widnes for the next stop on Nicki's tour. I stood back while they unloaded and loaded the van. That felt very strange as I'm normally very active.
We got home at about 4 this morning and I was awake at about 10.30.
My temperature is still "normal" but my back is giving me some real pain. I just can't get comfortable. My doctor said that I'd know when the injections kick in and I start to produce white blood cells because my joints will start to ache.
I don't think that this is what he meant.
We're back out on the road tomorrow (Wednesday) and again on Friday and Sunday. This gives me a day to recover.
I'm enjoying every moment of playing on stage. I wouldn't change this for the world. This is what I do. I just hope I can continue doing it for the remainder of the tour.
Saturday, 19 June 2010
Saturday 19th June
A strange week. On Monday evening I noticed a rash on my ankle that looked like an insect bite. The inside of my mouth felt like I was about to develop an ulcer.
I contacted the Centenary Wing and went to see them on Wednesday morning. The nurse looked at my ankle and consulted the doctors. They felt it was nothing to get concerned about at this time.
As the week progressed my mouth broke out in ulcers.
I constantly checked my temperature but it was normal.
All this is unfortunate as the singer that I play bass for has arrived in the UK for a month's tour. Yesterday we played the first show, up in North Yorkshire. It went very well, considering I hadn't played for almost a year. It was very cold however. I stayed in the van as much as possible.
It was a long long day. We left Kettering at 11 in the morning and didn't arrive back until 5 the next morning.
My ulcers and a developing sore throat gave me a lot of pain and discomfort.
We have another show near Evesham today. We should get back at a reasonable hour from that. Tomorrow we're booked to see a friend in Nottingham Prison and I'm scheduled to see the specialist on Monday.
At any other time these ulcers would be a minor niggle. Experience has shown that even a minor infection can lay me low. This couldn't have come at a worst time.
I contacted the Centenary Wing and went to see them on Wednesday morning. The nurse looked at my ankle and consulted the doctors. They felt it was nothing to get concerned about at this time.
As the week progressed my mouth broke out in ulcers.
I constantly checked my temperature but it was normal.
All this is unfortunate as the singer that I play bass for has arrived in the UK for a month's tour. Yesterday we played the first show, up in North Yorkshire. It went very well, considering I hadn't played for almost a year. It was very cold however. I stayed in the van as much as possible.
It was a long long day. We left Kettering at 11 in the morning and didn't arrive back until 5 the next morning.
My ulcers and a developing sore throat gave me a lot of pain and discomfort.
We have another show near Evesham today. We should get back at a reasonable hour from that. Tomorrow we're booked to see a friend in Nottingham Prison and I'm scheduled to see the specialist on Monday.
At any other time these ulcers would be a minor niggle. Experience has shown that even a minor infection can lay me low. This couldn't have come at a worst time.
Sunday, 13 June 2010
Sunday 13th June
Another week gone by. The weather broke and for a couple of days I felt unwell. Nothing specific, just unwell. However when the weather turned I was able to get back out in the garden and cut the grass and tidy up a bit. It's amazing how therapeutic it is.
Other than that I've been taking my pills and taking my temperature regularly and practising my bass guitar. Nicki arrives in the UK on Thursday and I'm determined to be at that rehearsal on Thursday evening and on the tour bus on Friday. If I can make the first two dates I'll be happy. I will then see the specialist next Monday, have my chemo and if all goes well, rejoin the tour a couple of weeks later.
I have an appointment to see an arthritis specialist next month and I'll have to postpone that as I'll still have chemotherapy drugs in my system.
Other than that I've been taking my pills and taking my temperature regularly and practising my bass guitar. Nicki arrives in the UK on Thursday and I'm determined to be at that rehearsal on Thursday evening and on the tour bus on Friday. If I can make the first two dates I'll be happy. I will then see the specialist next Monday, have my chemo and if all goes well, rejoin the tour a couple of weeks later.
I have an appointment to see an arthritis specialist next month and I'll have to postpone that as I'll still have chemotherapy drugs in my system.
Sunday, 6 June 2010
Sunday June 6th
The sun has been shining and I've spent a lot of last week in the garden. My friend Pip called around and kindly painted the garage door, which was looking a bit drab. I spent a few hours giving him a guitar lesson and he's happy to take that as payment.
I've felt pretty good all week. The chemo came and went without major pain or stress and I'm focussing on being well enough to meet up with Nicki, Bob, Tracy and Cozy in about ten days time. If I can stay healthy I should be able to go out with them for the first couple of shows before my next appointment in a fortnight's time.
Who knows, if I can stay fit and healthy and the chemo doesn't hit too hard I may be able to join them on a few more dates.
Meanwhile, I continue to take my drugs and measure my temperature a couple of times a day.
I have to take care that I don't get hypochondria. There's a lot of it about.
I've felt pretty good all week. The chemo came and went without major pain or stress and I'm focussing on being well enough to meet up with Nicki, Bob, Tracy and Cozy in about ten days time. If I can stay healthy I should be able to go out with them for the first couple of shows before my next appointment in a fortnight's time.
Who knows, if I can stay fit and healthy and the chemo doesn't hit too hard I may be able to join them on a few more dates.
Meanwhile, I continue to take my drugs and measure my temperature a couple of times a day.
I have to take care that I don't get hypochondria. There's a lot of it about.
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