Sunday, 30 May 2010

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, 24 May 2010

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.

Saturday, 22 May 2010

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, 19 May 2010

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, 13 May 2010

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, 10 May 2010

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.

Saturday, 8 May 2010

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, 1 May 2010

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.