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.

Wednesday 14th April

The doctors who are treating me tell me that the particular combinations of drugs that they are giving me play havoc with my immune system.
You can say that again.

My cough has returned with a vengeance. It's called pharyngitis or something like that. I don't have a sore throat as such, just a cough that won't clear anything. All the coughing gives me a headache. It used to be an annual affair, but this is the second or third time I've had it this year.
The last time I ended up in hospital being pumped full of antibiotics.
I keep ruuning through what might have caused it. Last week I spent some time in the garden and even managed to cut the grass (although it needs doing again). That might have set it off.

I've not had any chemo treatment since the beginning of February and there's a chance I won't be having any next week either. This delay keeps pushing back the date when I can resume "normal" life, whatever that is.
As it is, I'm sitting still because movement sets me coughing,and I'm monitoring my temperature every couple of hours.
It's life, but not as we know it.

Sun April 11th

I'm writing this early on Sunday morning. It's been a nice few days and I've been able to get out into the garden and cut the grass. I've also had a go at getting the dandelions before they start blooming.
Chris has a full size pool table in the garden so we removed the covers to let the air get at it and played a few frames in the evening. Well, Chris played, and I pushed the balls around the table, occasionally potting a ball, usually the white one.

The longer I stayed out there, the more I noticed jobs that need doing. Chris made a start today by finishing off the edge of a patio that has needed doing for about 18 months, and we took a lot of junk to the tip.

After all that exercise I retired to the living room to watch the rugby. The Saints were playing Munster in the Heineken Cup and they took them all the way  but lost by over ten points. Still it was a good game and they're still in the hunt for the league championship. I ignored the golf and the Grand National and watched the last day of the cycling which was exciting, and then the qualifying for the first race of the MotoGP season, which carried on as the last season ended, with Stoner, Rossi and Lorenzo battling for pole. Should be a good season.

All this armchair sport isn't getting me fit, but the warm weather means that I can walk to the shops or around the garden without having to put on layers of clothing and heavy boots.
One more week to go before my next blood test and appointment at the hospital.

Oh, and I caught sight of the cat that comes into the house and eats all the cat food. I will be posting wanted posters shortly....

April 5th

Easter has come and gone and I'm still two weeks away from my next bout of treatment. I did visit a DIY shed over the weekend and some friends and family called around over the weekend. I even walked to the shops to get a paper.
It's not quite warm enough to get out and cut the grass, which hasn't been touched since treatment started. If it doesn't rain this week I'll have a go at it. I'm also making plans to plant some beans and other veg in containers and Chris has been talking about replacing our garden shed since last year. maybe we'll do it this year.
We replaced our back door. The old one was about twenty five years old and not very sturdy. A good kick would have dislodged the bottom panel. The new double glazed door has a catflap so that Rufus can come and go. He won't go in the house but finds my onion patch very much to his liking. Some mornings we find that all the cat food has been eaten, and Rufus has been asleep on our bed all night. Methinks we have a stray visitor.....

Sunday 28th March

It's the end of another week. My cough seems to have calmed down a bit, although if I do start coughing I get very faint and have to hold on to the furniture. About normal for this annual occurence.
Chris and I have spoken to Nicki Gillis and we've worked out a way to keep her tour viable, so that's one less thing to worry about.
I'm still surprised how weak I am considering how long ago my last chemo took place. I really don't have a lot of stamina.
Other than these monor irritations I'm doing OK.
I have a fistful of jobs to do tomorrow, mostly phoning people. I just have to summon up the willpower to get started on them. I should have phoned Paypal last week but never got around to it.

I want to start work on a new album this summer. Something different. Rootsy and acoustic. My last few albums all began with that thought in mind but all ended up very electric. This time it will an acoustic album.....

Thursday 25th March

I went to bed late last night and didn't sleep at all well. I'm really tired today and my cough has returned with a vengeance.
I had a delivery of goodies from Australia today as a reminder of the tour that's coming too soon. I'm busy making arrangements to cover transport and PA as I drove the van last year and supplied all the kit. I think we've got a solution that will work, so the tour should go ahead OK, but without me.

That's all really.

Monday 22nd March

A frustrating day. We arrived at the blood clinic in good time to find a queue out of the door. This appears to be the Monday norm. I do get a fast track number because I have another appointment, so my wait wasn't long. The lady taking my sample struggled to get any blood, but then realised that the container was at fault. I had three separate samples taken and then walked around to the Haematology clinic. This was also running late but I managed to read a lot of the paper before I was called.
My blood results were excellent again. This is the fourth month that shows no trace of the leukaemia cells. However, my treatment has been postponed for four weeks because of this cough. It may now happen during the third week of April, three months after my last bout.
We have a week's holiday booked in May,and I think the timing will work out OK. If all goes well, then I will take my final course at the end of May.
This has completely scuppered any chance of being able to take any part in Nicki's tour, which starts in the second week of June.
I'm having to find another target or project to focus on.
You're old when you have nothing new left to do. I'm not ready to quit yet.

Sunday morning 21st March

I visited the eye clinic last Wednesday morning and was given the all clear. I still have apply the eye drops, but less frequently.
During the afternoon I started coughing. I've been coughing ever since.  Nothing seems to stop it. Antiseptic throat spray numbs my throat for a few minutes. I cough and cough but nothing shifts. I cough so much I feel faint and have to hang on to the furniture. My chest aches from the coughing. I've checked but I'm not running a temperature.
This will be the fourth or fifth year that I've had this. When it strikes I just have to sit still and wait it out. Sometimes I just have to sit upright, even through the night.
Life is on hold.
I have a blood test and an appointment to see the specialist tomorrow morning. If he agrees then I will have my long delayed fifth course of treatment on Tuesday.

Tuesday 16th March

Another lazy day. I didn't get dressed until mid afternoon. I spent the morning reading the paper and completing the word puzzle. The same as every day.
I posted a couple of articles on my other blogs and practiced my stick bass for a few minutes, but couldn't settle.
I don't know what's the matter but I expect I'm depressed. I've missed two targets that I'd set for this year. I should have played at a charity gig last weekend but I've only just got out of hospital, so that had to go.
Then the biggie. I've been looking forward to Nicki Gillis' tour since last summer. Then I was diagnosed with CLL. We looked at the dates and if all went well, it was still possible to get my treatment done and dusted and be recovered enough to fulfil the dates.
That was before my eyes started playing up in January, when my treatment was delayed by two weeks due to scleritis in my eye. That put my January treatment back to the first week in February.
Just before my March treatment I got ill and ended up in hospital again. I'm hoping to have my next treatment in the third week of March and the final dose four weeks later.
This just doesn't give enough time for my body to recover, so the doctors won't give the go-ahead to tour.
On the plus side, my recent bout of scleritis has responded to treatment, and I'm due to attend the clinic tomorrow. I'll have to get a taxi home.
And then I'll sit and read the paper. And do the word puzzle.