Update

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 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.

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!

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.

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.

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.

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.

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.

Sunday 30th May

I managed to finish my course of chemo without throwing up once. That's not to say I don't feel ill, or tired, or that my lower back's not giving me grief.

I started on Tuesday moring at about 5 in the morning. The previous day's dose of Rituximab left me very tired so I went to bed when I got home from hospital. However, this meant I was awake in the small hours feeling restless. So I got up and made myself a drink and then took my first dose  of Cyclophosphamide pills, six tiny white pills. I also took an anti-nausea pill as a precaution. I have to wait an hour before I can eat anything but the time soon went by. I went back to bed and started to read but tiredness overcame me and so I slept until late in the morning. This time I got up and dressed.
My instructions are to drink plenty of fluid but this may actually increase my nausea. It certainly makes me feel hungry as my stomach contracts, so my day was interspersed with numerous snacks. I have, however, stopped eating chocolate, because I couldn't just eat a chunk ot two. I was eating the whole bar at a sitting. No problem if they're tiny snack sized bars, but people were buying me the 400g bars and I was devouring them in a day or two.
Is chocolate addictive?
My son has his own fridge next to ours and I notice that the salad tray is packed full of chocolate Easter eggs. Am I tempted to help myself?
Only when the door is open.
I have to take some more pills each lunchtime. These are called Fludarabine and I take five tiny pills each day. So down they go with some more water, followed by cups of tea.
I enjoy watching professional cycling on the TV and this week has been the final stages of the Giro D'Italia, so I set the timer for that and tried to watch it in between finishing the codeword in the paper, and dozing in the chair.
Even so, I'm ready for bed by nine or so, and I fall off to sleep...

Only to wake at about four or five the next morning. I've seen the sun come up every morning this week, and heard the dawn chorus as well.

This was my schedule all this last week.
As the week progressed I increased the dose of anti-nausea pills to the maximum and I managed to survive without being sick, and I consider that a minor triumph.

On Wednesday evening Sue and I went out for an hour down to the Cherry Tree pub in town. Chris was playing his final dress rehearsal prior to his band's appearance at the Glastonbudget festival in deepest Leicestershire and I wanted to see how they're progressing.
It's been a tough old slog for them to get the band ready, with two personnel changes in the last year and a constant refining and honing to get the sound and image right.
They sounded great, but a bit loud when I went down the front to take a picture. My ears are no longer used to the volume. I can't stand up for very long either, so we stayed less than an hour before Sue, ever mindful of the fragile state of my immune system, took me home.

So that's been my week. Chris said that his band played well and attracted a good audience, although he couldn't hear any guitar, just his drums and Iziggy's vocals. Ah, the good old days.
When I played in Left Hand Drive all I could ever hear was my guitar and a bit of drums. I could never hear the vocals and I was singing!
That might account for the tinnitis then.

So here I am on Sunday morning, looking forward to breakfast, the Formula One, the final stage of the Giro later this afternoon, and three weeks of recovery before I do it all again, hopefully for the final time.

Monday 24th May

I came back from holiday feeling fitter than I have in a long time. I went to the hospital feeling very confident that I'd get the all clear.

I was 99% successful. The problem was the remaining 1% leukaemia cells lurking deep within my bone marrow. My doctor explained how about how new the treatment that I'd been having was, and that they didn't have enough information about survival rates where the treament (the chemo) was cut short.
Basically my survival rate is higher (or longer) if I have the full six courses. I tried to have the last two sessions postponed until August but to no avail. So I started the fifth course this afternoon.
I started having the rituximab drip in the Centenary Wing day clinic and was transferred to Lilford Ward after about 4.00. I finished the course at about 8.30 this evening and I start taking the other drugs tomorrow.
This has killed off any hopes I may have entertained about taking part in Nicki's tour in a month's time and I will be having the sixth and final session then, all being well.
On the plus side the weather is warmer and I'm feeling fitter that I did last autumn when I began the treatment, so I'm hoping I can stay healthy and out of trouble and get the all-clear in August.

Home sweet home

Just back from a week in Whitby. The sun shone every day and I feel much better for it. I've walked further in the last week than I have in the last six months in total. I'm struggling with my back and have to rest/sit down frequently but there's a world of difference between feeling ill and feeling tired.
I have an appointment to see the specialist on Monday and should get the all-clear with the CLL.
I also got sunburnt sitting in the passenger seat as Sue drove home. I daren't take my shirt off as I'd look like a Swan Vestas match.

Wednesday 19th May

I'm writing this in Middlesbrough Central Library. We got up early to catch the 8.52 from Whitby to Middlesbrough and enjoyed a train ride along the Esk Valley and on to Middlesbrough. We have about four hours before we catch the train back. At £8.70 for both of us it's a bargain.
We arrived at our holiday home on Friday and soon got settled in. We've stayed in this house before so it was just as we remembered it, except that the sofas were new and quite comfortable (most holiday homes aren't).
We called in to the Convention to say hello, make contact with Colin on the sound desk and put our CDs on display. It was good to meet Paul Wheater again. He was rushed off his feet as usual. We're hoping to spend more time with him later in the week.
Saturday was spent lazing around. I didn't want to tire myself out before the evening concert. We arrived at the venue in good time and I was first on. George Hamilton IV introduced me in his usual inimitable style and I sang five songs. I had to sit down as my back was hurting, but the songs went really well. I told the audience that they'd been listening to tracks from my forthcoming album. I'm hoping to make a start this summer.
Sunday was another lazy day. We watched the Monaco Grand Prix and then went down to the Convention to meet some friends, leaving before the concert got under way.
Sue managed to put her back out while getting out of the shower so we both hobbled around the town, stopping frequently to look at the view, lean on the harbour railings or sit down. Someone once described getting old as always looking for somewhere to sit, and I know what they mean.
Tuesday was spent at Saltburn by the Sea. I really like the place. It was sunny and warm away from the beach and people are friendly and happy to chat all day. On the way back we called into Grosmont and had our first sniff of steam as we walked up to the engine sheds and watched the trains go by.
I'm doing a fair bit of walking and I'm tired by the end of the day, but I'm sleeping well even though the bed is a bit small. Feeling tired is not the same as feeling ill, so I'm hopeful that I'm on the road to recovery.
I'm not sure what else I'm doing this week. It will involve a fair bit of sitting and looking at the sea.

Thursday 13th May

It's cold. That said, I'm feeling OK and looking forward to a week away by the seaside- the North Sea.
I'd better pack a winter coat.
I've been practising my guitar and singing the songs I'm planning to perform on Saturday night. I've chosen a few that I've never sung before. We've played the Whitby Gospel Music Convention so many times and we've probably sung fifty different songs in different styles, mostly with backing tracks but a few unplugged, so It's time for a change again. Just me and my guitar, a kind of homage to late period Johnny Cash. I've been singing his version of "Hurt" for a couple of years and it's on my list, but I doubt I'll have time to sing it because I have other songs to sing.
We usually get three spots during the weekend but I've asked to limit this to one spot of about twenty minutes. I'm confident my voice and my back will hold out that long. Hence the distillation of my set into about six songs. Songs that people will remember.

I've also been sorting out some CDs to sell. I found a box of "Songs of Praise & Devotion" that lacked inserts or traycards, so I've been printing and guillotining all morning. I had a lovely laser printer for Christmas so the print quality is good.
This is very much a transition time for me. I'm thinking about which musical direction to take and I'm clearing out some clutter. I have to sort out my website as it hasn't had any attention for about three years- a lifetime in interweb terms.
I designed the banner yesterday. This is it

I'll get to grips with the site when I get back from holiday

Monday May 10th

I went to the hospital expecting to hear the results of my bone marrow scan but they hadn't been received, so I have to wait two more weeks.
My blood results are consistently "normal" which is encouraging, and I can tell the chemo is wearing off because all my pre-existing aches and pains are resurfacing!
All being well we're away to Whitby for a break this weekend.
Blogging may be light.

Sat 8th May

Brrrr. It's cold and wet again. That's the start of the British Summer for you.
I've had a good week. I've felt well. Still the aches and pains that go with enforced inactivity, alllied to  lower back pain that means I have to sit down if I walk more than a few hundred yards or stand for more than a few minutes.
I'm looking forward to next week on a number of counts.
The first is that I see the specialist on Monday. That meeting will determine how the rest of the year will go. I had the bone marrow test and I will get the results. If they're good then no more chemo for now.
At the end of the week Sue and I are away on holiday to Whitby.
I just hope it warms up.

Saturday 1st May

I've been feeling much better as the week has progressed. I've cut the grass and taken a trip into town without any ill effects. My temperature has remained normal. Maybe it's the warmer weather.

My last bout of chemo was during the first week of February, which is over three months ago.
My muscles ache, especially my lower back, but I suspect that is more to do with lack of exercise than anything else. I'm looking forward to getting fitter.

My friend Jerry Arhelger and I toured the UK a couple of years ago, playing churches and clubs and meeting a lot of people. During our conversations he used to refer to his "chemo brain" and I know what he means. I lost the ability to concentrate on anything, and it's only gradually returning.
I always said that mental work was as tiring as physical labour, and these last six months have brought that home to me. I'm struggling to concentrate enough to play my guitar and sing for more than a few minutes at a time. I'm hoping for the all-clear in a week's time and want to play some part in Nicki Gillis' UK tour, which starts in mid June.

However, the idea of me driving a couple of hundred miles and playing bass for a couple of hours afterwards still seems very optimistic. But I'm hopeful we can work something out. My son Chris is lined up to drive the van and carry the kit.

Let's hope that Monday week brings good news.

Bone marrow test Weds 28th April

I went to bed early on Tuesday night and managed to sleep through until almost eight. At least I wasnt thinking about my stomach. I couldnt eat or drink anything before attending the treatment centre.
We arrived at the brand new treatment centre at Kettering General Hospital. Very big, very airy and very similar to the new Prospect House medical centre close by. That is where my doctor is based. Two medical practices in one building.

Its immediately obvious that these buildings have been paid for with public money. They have been laid out without regard to staffing costs. At my doctors surgery there is a large ground floor lobby with a receptionist sitting there. Her job is to direct people to the next floor, as the surgeries are located there. You go upstairs and there are two reception desks,one for each practice, with at least two receptionists at each desk.
The new Treatment Centre also has a receptionist on the ground floor. I went to her desk to be told that I need to go upstairs. I went upstairs and there is anorther reception desk just outside the lifts. I was checked in and directed to the waiting area. And then I was collected and brought into the day ward.

The duplication and overstaffing of support staff is staggering. If these were private businesses they wouldnt waste the money. Is the NHS a job creation scheme for admin and clerical staff?
I think the treatment I m getting is second to none,but the cost of delivery must be horrendous.
But the people who make the decisions dont have to pay the bills, just ask the government for more cash or else close a ward or get rid of some front line staff.


As I said, I m grateful for the care and attention I get. I have been working and paying tax and National Insurance stamps for over forty years, so if anyone is entitled to NHS treatment I am. I just dont believe that we can afford the NHS in its present form.
Cameron, Brown and Clegg have all said that the NHS wont be subject to cuts after the election. That is just to ensure that the NHS staff will vote for them. The NHS is the largest employer in the UK and the fourth largest in the world. If cuts have to be made to stop the country going bankrupt, then the NHS will have to be cut as well.

I know where some cuts can be made that wont affect the level of front line care. You can start by closing down duplicate reception desks.

My bone marrow test went very quickly. I had a local anaesthetic and apart from being pushed and pulled while they dug needles into the bone in the small of my back, I felt very little pain. Ive had worse dental treatment.
I was back home by lunchtime and was told to rest up and not remove the plaster on my back for a couple of days.

I get the results in about ten days time.

Monday 26th April

Hi again. Another week has passed by. I have an appointment for a bone marrow test on Wednesday followed by an appointment to see the specialist on Mon 10th May. I should know a lot more after that.
If the treatment I've undergone so far has been successful I will be in remission and can concentrate on building up my strength and immune system. If not, then I will have the two courses of chemo that Ive missed due to illness.

The warm weather has been good. I can sit out in the garden or in the conservatory. Sue and I drove up to Derbyshire to visit a friend in prison yesterday, and I drove back via Loughborough and the Great Central Railway. It was late in the afternoon when we arrived, but still saw a couple of steam engines passing through the station. We go on holiday to Whitby in a couple of weeks and there is a steam gala on the North Yorkshire Moors Railway while we are there, so I expect we will have a trip on the train.

A few days ago I reported that another cat has been coming into the kitchen and eating the food we put out for Rufus. I caught him red handed last week but he escaped through the cat flap. He is quite a young cat and we dont know where he lives. He came back on Saturday morning and I was able to photograph him.

Heres the "Wanted Poster" I promised

Mon 19th April

I'm just back from a morning spent at the hospital. There were no queues when I went to have my blood taken, which is unusual for a Monday morning. Maybe everyone is stuck at an airport somewhere.
We then walked to the Centenary Wing Clinic to find that empty. Very strange. Where is everybody. We soon found out. The clinic was taking place in another part of the hospital so we retraced our steps, saying hello to a friend along the way. We arrived at the new clinic area, booked in and I went to be weighed. Another 3Kg heavier. I thought my jeans were getting tighter.
Eventually we were called in to see the specialist. He was not a happy bunny, having been evicted from the modern state of the art consulting rooms and forced to use a grotty and run down cubicle that didn't even have a paper roll to cover the couch. Or a stethoscope. Or a pad of sicknotes.
He made it quite clear to anyone within earshot how unsatisfactory it all was. And it was. Is.
It seems that the powers that be have decided that a unit that was based at Northampton is having the use of the Centenary Wing Clinic, and it's a shame because there was a continuity of care and a sense of being part of a community in the old location. And there were volunteers ready to make you a cup of tea.
Not any more.
Once again it has been proven that the people who take these decisions never have to live with the consequences, or else they wouldn't make them.

Anyway while all this was going on I sneaked a peek at the computer screen, where my records were displayed. There were tables of figures that showed various blood results, and it was clear that the numbers are going down. For instance, one column's readings for the last three months were 0.6, 0.5, 0.1. i don't know what that means but my specialist thinks this is very good, as all the other indicators show the same trend.

So what's going to happen? I'm still coughing and sniffling and I could see the doctor weighing up the various alternatives. This is what he's come up with.

Tomorrow's chemo has been postponed indefinitely and I will have a bone marrow test next week. This will determine whether the four bouts of chemo have done their job and I am in remission. If I still need more treatment this will take place at a later date.
I had a nasal swab for another test and received more drugs to keep me going for five weeks until my next appointment.

It could be good news. At least something's happening either way. I was getting sick of living in limbo.

Saturday 17th April

Another sleepless night. This cough won't let up. It starts as a tickle and then builds and builds until I can't stop coughing. My chest muscles hurt and I've a thumping headache from where my brain is rattling inside my skull.
I'm supposed to have another bout of treatment next week. Will the specialist let it go ahead?
I'm fed up with it now.
I will be even more so if they tell me that my blood count is still very good, meaning that the leukaemia cells are negligible. I've been told that since before Christmas but I'm no nearer to completing my treatment because my non-existent immune system means I pick up anything and everything going.
Life is on hold.

I've caught sight of the cat that sneaks into our kitchen to eat all the catfood. He's a bit too quick for me but we've had a couple of staring sessions, once through the kitchen door after he'd made his escape, and last night I chased him out of the garden. I expect he'll be back again soon.