Friday, 30 October 2009

Bloody parrot!

Yesterday I cleaned out our parrot's cage. Billy is a Timotay- a small African grey and is about 19 years old. We've had him since 1996 and you'd think he'd be used to me by now. He's a sucker for the ladies- they can put their fingers into his cage and tickle his belly- but if my fingers are anywhere within reach then he'll strike.
Well yesterday I was moving his cage and thought my fingers were safe, but no. He bit my right index finger so hard it drew blood.

After I'd finished cursing and swearing I spoke to Sue and she suggested I ring the clinic. They thought I ought to have some antibiotics- just in case, so I phoned my GP who agreed. So now I'm taking some more anti-biotics, along with the three days a week antibiotics that are part of my treatment. All I have to do is remember when to take them, and remember that I need to take four per day on an empty stomach.

Other than that, I've been quite tired with a sleeping pattern that's gone to pot. Last night I fell asleep on the sofa at about 8.00, woke up briefly when Sue went to bed at ten, woke again when Chris came in at about 11.30. had a cup of coffee, dozed off when he left the house to drive to London and woke up at about 3.30. I watched some tv programmes that I'd recorded until about 6.00. Sue heard me and came downstairs. I promptly fell asleep again, waking at about 8.30 (Sue had left for work)and again at 10ish. I got up, had some breakfast and washed and changed. I had my lunch at 11.30 and fell asleep again, waking just after 2.00. I watched a bit of TV but fell asleep before the end of the programme on the Discovery channel, so I rewound it and managed to see it all in between spells of dozing off. Chris arrived back home at about 4.00 and Sue at about 5.00. I don't know what day it is.

Tuesday, 27 October 2009

Tuesday- appointment with the specialist

Today I had to go to the hospital for a blood test and an appointment to see the specialist, who told us that my leukaemia cells were down to almost zero- as were my normal white cells. So I have to inject myself each day with a drug that builds up white cells. I have another appointment next week.

My back still hurts. The specialist doesn't think it's anything to do with my illness. I'll have to see my GP this week.

Thanks to everyone for their support and prayers. I'm still aiming to sing at Whitby next May and to tour with Nicki Gillis in June and July, and try and get some shows of my own next Spring if possible.

I may not post everyday. Take it as read that I'm OK. I'll post if anything changes one way or another.

Monday 26th October

All in all a good day. I seem to have got my appetite back. I dozed off during the afternoon while waiting for my friend to call around and was woken up by the phone. It was the call from HMRC (the UK version of the IRS) that I'd been waiting for.
I collected all my bits of paper and went to the computer. It took me three attempts to log on the the HMRC website- the login details are quite complex. I finally got logged on when the caller told me that he couldn't help and that I needed to speak to another department (the one I rang last week. You know, the one that said they couldn't help and would arrange for someone to call me? Yes, that one.)

I wouldn't mind but there's a mail strike on, they didn't send me a paper tax return because I filed on-line last year, so I couldn't just send the return in by post and have it arrive by the weekend in order to avoid a penalty for late filing. So it has to be on-line. That's something to look forward to- not.

While all this was going on my friend rang me on my mobile. He'd taken the wrong turning off the motorway and was driving down a country lane heading in my general direction. I'd given him simple and clear instructions
(junction 7 first left off the roundabout, down the hill under the railway bridge. Up the hill to the big roundabout, take the third exit towards the town centre and take the first left after 100 yards. Take the third right, drive to the end of the road and turn left. My house is along....)
So now you all know how to find me, just let me know you're on your way so that I can put the kettle on.
I then had a call from my friend who was ringing from the middle of an industrial estate. He'd ignored the first turning off the roundabout and, well you just don't need to know. I extricated him from there and he rang me some time later saying he was somewhere on my street. I went outside and flagged him down.
The point to all this is that my friend lived with us for three months a couple of years ago. Surely he can find his way back?
Anyway, the end result was that he didn't have anything like as much time as he hoped he'd have, and after a brief tour of the garden (which was all new to him), the studio (which has been revamped somewhat in the last four years), had a chat, watched some video of my last tour with Nicki Gillis and it was time for him to leave to go on to another meeting.
I got my road atlas out and we discussed the best route to take and then as he sat in his car ready to leave gave him simple easy instructions to get to the main road, which begins "take the first right...."

I stood by the roadside and waved him off. He accelerated away, right down the road, straight past the right turn he should have taken.....

I think it's time he invested in a satnav don't you?

I have a blood test at 10.30 tomorrow followed by an appointment with the specialist.

Monday, 26 October 2009

Saturday & Sunday

I had a very quiet weekend. My back gave me some grief from time to time and I decided that it was better to feel queasy on a full stomach than on an empty one.
Sue and Chris visited a friend and left me home (I was originally going to go as well, but took the doctor's advice and stayed home)
So my Saturday was spent in front of the TV, interspersed with sleeping on the sofa. For added excitement I worked on the crossword (i'm saving my book for when I get really bored).
Anyway Saturday became Sunday. Sleep three hours, awake to eat, watch TV, more sleep, more TV.
Chris finished the new garden feature and it looks great. I did walk to the local shop to buy some bread and bacon, so we had bacon & egg butties with HP sauce- yum yum!
I sat and watched TV (what else) until about nine when I went for a lie down in the conservatory. I woke up at two this morning, had a drink and some cereal and guess what, watched TV before falling asleep again.
Three hours on, three hours off.

Looking forward to this afternoon when a friend is calling in. I haven't seen him for a couple of years, so a good time is anticipated. He's bringing his guitar as well.

My bloodshot eyes have cleared up.

Saturday, 24 October 2009

Friday- con't

I felt rough all day. The anti-nausea pills helped a lot. I made sure I had plenty to eat and seemed to sleep most of the day, which is probably why I'm still up at 3.00am.
I've got what might be conjunctivitis in one eye, so it looks very bloodshot. I rang the hospital and the nurse said there was a lot of that at the moment. still, it's not causing me any grief at the moment.
I was planning to go visit a friend tomorrow but have decided against it. I'm at my most susceptible to infection at the moment so I'll remain stir crazy for another couple of days.
It's something when you hoover up for something to do.

Friday, 23 October 2009

Friday morning

Having gone to bed at 9.00 it's no surprise that I was awake at 3.30. I got up and went downstairs and for the first time felt a bit nauseous. I thought it might be down to not eating much yesterday, so I made some cereal at about 6.00 but couldn't eat it. I took my tablets, including some anti-nausea pills and went back to bed. I woke again at about 10.30 and this time managed to eat some rice crispies. I think the sickness is down to not eating, so I'm going to make sure I eat plenty today.

Thursday- looking back

Once again I woke up early and went downstairs. I slept on the sofa for a while then I had a phone call from a friend I hadn't seen in months. He was in the area and so called around at about 9.30 and stayed for a couple of hours. It was good to catch up, even if most of the conversation appeared to be about how ill we'd been. We played a bit of guitar and generally had a good time.
My friend Stuart phoned. We're going to see him on Saturday, all being well.
Chris finished his driving job early and worked in the garden all afternoon making a pergola to replace the metal archway that rusted away and had sagged under the weight of honeysuckle. It's almost complete now and looks really good, almost 20 feet long and will be support for two different honeysuckles, a climbing rose, winter flowering jasmine and some loganberries. It should look great next summer.
I didn't eat much during the day but had a good dinner. I'm supposed to drink a lot but kept letting my coffee go cold. Hmmmm. I went to bed at 9.00 not feeling entirely well.

Wednesday, 21 October 2009

Weds morning 21st October

I went to bed early last night and woke up at about 4.30. Eventually I got up and made myself a drink and some cereal, then lay on the sofa downstairs with the TV on low.

It's wierd, I'm supposed to be ill. The doctor told me that I have CLL, and I'm going through the treatment. But I lay awake this morning thinking that I don't feel any different than I did months ago, when I was working, even driving and touring with the band. I get tired, that's all.

I'd feel worse if I had a cold or flu. However, the docs say that I need to avoid any infection so I have to stay in quarantine.

What a strange sort of illness.

Tuesday, 20 October 2009

Tuesday afternoon

My second chemo session went very well. No bad reactions and no side effects. I sat in a reclining chair reading the paper while the drip did its thing. I even had a snooze.
In fact, I was ready to leave at 3.00 because the nurse was able to increase the dose.
Thanks to everyone for the messages of support and encouragement, and for their prayers. One friend who must remain nameless said that they'd be praying even though they're not a believer.
I've got loads of pills to take this week and then I go and see the specialist next Tuesday. Then my next date in the chemo chair will be about 4 weeks away.

Tuesday morning

After I posted the last entry I went back downstairs and lay on the sofa shivering. I covered myself with a quilt (having shooed the cat from his sleeping place) and fell into a deep sleep for several hours. I awoke and had some tea, carried on reading etc and then it was time for bed. I slept well, only waking up at about 5.00.
I got up and showered and now it's time to take my pills before going back to the hospital. All good so far.

Monday, 19 October 2009

Monday afternoon

I subscribe to the cockup theory of history, that is to say, events that have shaped our world tend to be as a result of a cock-up somewhere rather than down to good planning, good execution or even good luck.

Sue and I parked up at the hospital a few minutes before half past eight. I asked her for my appointment letter. She said that she thought I had it. Doh!
The door to the Centenary Wing was locked so we walked down to the Path Lab to be confronted by a huge queue of people (this was 8.30 on a Monday morning and some people has arrived at 7.00 to be at the front of the queue. Now there are some things I'd happily queue for, but a blood test on a Monday morning?)
The queue started moving and we eventually arrived at reception. Of course we didn't have the appointment letter, so I held the queue up even longer while they rang the Centenary Wing. Guess what? I didn't need a blood test after all, so we trooped back to the clinic.Doh!

After all the paperwork formalities it was upstairs to the treatment room where I was hooked up to a drip. The first bottle was radflush, the second was radweld and the third was the dose of chemo. This took most of the morning. I had a book and buried my head in that, stopping only to drag my drip on wheels to the WC. I asked the nurse what happens to all the extra fluid that's injected into my veins. You'll be pleased to know that my kidneys took care of that, which may account for the frequent trips to the loo.
I was given my drugs for the day, a cocktail of big pills and small pills, mostly white but with some pink ones thrown in for colour. The nurse then gave me a bag full of pills and potions and a handy chart telling me which pills to take and when.

We arrived back home soon after one.

Day one sorted. No adverse reactions. Tomorrow I get the big dose (almost an armful, as Hancock once said). It'll take most of the day to administer (no high speed fueling rigs like they have on F1) and if they haven't filled me up by close of play I will have to stay the night.

(the terms radflush and radweld hark back to the days when people did their own car maintainence, so substitute the words saline solution and premed if you'd prefer. It doesn't conjure up as good an image in my opinion)

Monday morning

I once wrote that the moment of truth is a line in the sand. On one side of the line it's all theory and hypothesis. I'm going to have my breakfast and then I cross the line.

Sunday, 18 October 2009

Sunday eveing 18th October

A good and productive day. Sue and I spent some time in the garden. I planted some cabbage and onions in the veg patch, then settled down to watch the F1.
Good old Jensen! It was nail biting stuff but we cheered him on, then watched the team celebrations on the Digital red button. The team is based at the south of the county in Brackley,so they're all local to us. The engines are built even closer, in Brixworth.

I've just been in the studio to record a version of the new song. I've no idea what will happen to my voice in the next week or so. It's usually the first thing that goes if I get ill, so I've put a track down- just in case.

I have to be at the hospital at 8.30 in the morning. I have a blood test, then I check in for my first chemo session. I'm having three different drugs, two in pill form and one by drip. I will be given a small dose of the drip to see if there's any reaction or side effects, and if all's well, I have the main dose on Tuesday.

I'll post as and when for the next day or so.

Sunday 18th October

Although I didn't get to bed until about 5.00, I was still awake by 10. Everyone else was sound asleep so I got up, made myself a drink and finished off the song I'd started yesterday.
Here's the first draft. Oh, and the picture is one of my favourite locations in Cornwall- the place that inspired the song.

Carn Glooze

The sunlight on the water
Jewels in the sea.
There ain’t no place on earth that
I would rather be.
The sunlight on my skin
The breeze that moves my hair
I only close my eyes
And I can be right there.

This is the place where I can lose my blues
I hear it calling, and I can’t refuse
The ocean calls to me from Carn Glooze
The ocean calls to me from Carn Glooze

The headland looks out on
The old man in his bath
While weary walkers pause
From climbing up the Path
I sit upon the rock
And listen to the sea,
The cry of peregrine
The humming of the bee.

This is the place where I can lose my blues
I hear it calling, and I can’t refuse
The ocean calls to me from Carn Glooze
The ocean calls to me from Carn Glooze

© Dave Clemo 18th October 2009.

Saturday 17th October

Saturday was an OK day. Sue's sister Pat called in and they went out to lunch. Then we went to the garden centre to get some plants and some compost before getting some shopping done. The my friend Colin rang and we chatted for almost an hour. Before I knew it it was F1 qualifying and that overran by almost two hours. We then waited until Strictly Come Dancing had finished and then watched it from the start. It was about midnight and I should have gone to bed but no, I stayed up and watched a film. Hence this post at 4.15.

I've started writing lyrics to a tune I've been carrying around. Only one verse so far but I'm hopeful that it'll come together. I need to sit still to write. I'm a lazy songwriter in that I only write when I have something to say, but I'm not lazy once I do start writing. I work hard to make the lyrics scan and rhyme, with a regular and consistent metre. Call me old fashioned, but that's what I like, and I take pride in my craft. I don't know if my work is any good- that's for others to decide.

By the way, if you read this, please please please add your comment. Friends are telling me that they are reading my posts. Just say hello when you drop by.

Friday, 16 October 2009

Last day at work- Friday 16th October

It was a hectic day, not helped when I discovered that the alarm clock was 20 minutes slow! I was heading for the shower when I should have been heading for the door! I arrived at work to be told to load up all the scrap paper and take it to the recycling centre. Job done and got stuck into the day's tasks, which included updating some of the firm's documents, typing up more instructions on how to do jobs that get taken for granted, and keeping the tea and coffee coming.
I took the post down early and went shopping for all the essentials- tea bags, coffee, toilet rolls, etc. Once that was finished it was time to go home. I got in and slumped on the sofa, and woke up an hour later.
I chilled out until tea was ready. My friend Pete arrived just as we finished tea, so we went into the studio to work on songs for our showreel. We call ourselves The Back Numbers and we play music from the forties to the noughties, all styles including rock n roll, country, pop, standards etc. We were hoping to be working in the run up to Christmas but we'll have to see how I respond to treatment.
It's surprising how much there is to organise. I've still got to file my tax return online. I'm making excuses now. I can't be doing with it. It's not that I make any money from music but I have to file a return anyway. Each year I agonise over the forms and eventually get them sent off. I think that my hard earned knowledge will help the next time I have to fill the return but every year the forms are different or the rules are different. I printed off each stage of my online return last year in the vain hope that it would help but no.....
I'll have to ring the helpline and have someone talk me through it.
That'll be next week's challenge.

Friday 16th October

It's 4 in the morning. I went to the dentist yesterday and had a couple of fillings. I'd had to cancel the appointment a couple of times before but with my chemo starting on Monday I had to get it out of the way.
My dentist gave me three or four injections then sent me back to the waiting room while they took effect. I was a bit tired anyway, so was almost out of it when they called me back to the treatment room. I offered no resistance when they donned my bib and safety glasses. (Safety glasses? Is that supposed to make me feel better? It's like the X-ray technician who insists that the X-Rays are safe but leaves the room while the machine is working.)
My teeth didn't hurt when he drilled with the high speed drill. The next drill was either a countersink tool or a road drill. It didn't hurt but the vibrations turned my brain to jelly. Then he fitted several instruments of torture over my teeth. He called them clamps. I'd love to know how big they were, but they felt enormous.
Then I swear he climbed in my mouth to apply the cement and rendering. I had a mouth full of iron and was buzzing away, so didn't actually feel any pain, just the sensation of being pulled around.
The final indignity came when I was asked to swill out my mouth with a mouthwash. One half of my face disobeyed orders. I couldn't feel the cup. I couldn't close my mouth around it, and I couldn't stop the liquid from dribbling out before it reached the inside of my mouth. In the end I used some tissues to wipe up the dental debris. I made an appointment to see him again in six months time and then walked back to the office. Which used up all my energy.
During the evening I set up this blog before turning in at about 10.30. My jaw was coming back to life and ached like you don't know. I think I've got a scrape inside my cheek that may turn into an ulcer. I woke up at about three with an aching jaw. I gave up and got up, took some painkillers and updated Facebook before writing this blog entry.

Today is my last day at work and I need to make sure that all the stuff I keep in my head is written down so that the others won't struggle. It's amazing how much stuff one takes for granted.

Thursday, 15 October 2009

How it started

I've been having spells when I've been very tired for a couple of years. I put it down to my age, and my sedentary lifestyle- periods of sitting at a desk punctuated by periods of intense activity. I'd had an industrial injury back in 2003 that took a while to get over, so I can't pinpoint exactly when it started.

The Leukemia Research website tells me that "Chronic lymphocytic leukaemia (CLL) is a form of leukaemia in which there is an excess number of mature, but poorly functioning lymphocytes in the circulating blood. In CLL the major reason for the build-up of tumour cells is the failure of lymphocytes to die at the end of their normal life span. The rate of production of lymphocytes is not significantly increased and may even be lower than normal.
Lymphocytes are white blood cells that are vital parts of the body's immune system. Lymphocytes can be classified into sub-groups according to their function - the main groups are B cells and T cells. This is called immunophenotyping. All cases of CLL and most lymphomas (tumours of glands) affect the B cells. T cell leukaemias are extremely rare.
Chronic lymphocytic leukaemia is overwhelmingly a disease of later life, it makes up 40% of all leukaemia in patients over 65 years old. The overall incidence is about 3/100,000 per year with a median age of onset of 65 to 70 years"
..... Which is a bit of a bugger, 'cos I don't get my bus pass until Christmas. (in the UK you get free bus travel when you're 60).

I first noticed that the glands in my neck had swollen up when I was playing bass on the Patsy Cline Theatre tour earlier this year. I didn't have any other symptoms, but did report it to my GP. During July 2009 I played bass on Nicky Gillis' UK tour, and I realised that I hadn't had any time off with Sue all summer, so we went away to Wales for a long weekend. It was great, the weather was good and we had a trip on the Welsh Highland railway- over 20 miles of steam through Snowdonia- awesome.
On the way back I stopped to pick some bilberries that grow in with the heather on the mountainsides. The next day I noticed something on my leg and guessed (correctly) that I'd picked up a tick. Two days later my GP confirmed that it was a tick and removed it. He then gave me some strong antibiotics (which laid me low with a headcold). After two weeks he sent me for a blood test to check if I'd contracted Lyme's disease. When the results came back he sent me to the haematology clinic at the hospital for more tests including a CT scan and a bone marrow test.
The results came back and I was told by the specialist that I had CLL.
My treatment is due to begin next monday 18th October 2009.
I hope that this will be a regular log to describe the highs and lows, and a means whereby friends can keep up to date with my progress.

I'll close this first post with some more from the Leukaemia Research website

"Chronic lymphocytic leukaemia is a form of cancer which affects blood producing cells in the bone marrow. The disease is unknown in childhood, very uncommon in young people and becomes progressively more common with increasing age. Men are more likely to be affected than women. The majority of patients with CLL have a slowly progressing form with a survival of ten years or more. Chronic lymphocytic leukaemia is not considered curable with the possible exception of younger patients who receive stem cell transplants. A minority of patients have a more rapidly progressing form of the disease with a much shorter median survival. Standard practice is not to treat patients who have early-stage disease or have no clinical symptoms. There is no evidence that early treatment prolongs survival for these patients. Treatment is started either when patients become symptomatic or when laboratory results indicate that the disease is progressing.

The mainstay of treatment is chemotherapy. In most cases this involves low doses of drugs taken by mouth. The drugs most commonly used are chlorambucil, prednisolone and fludarabine. Radiotherapy has a very limited role in treatment of chronic lymphocytic leukaemia. Most people with CLL would not be considered for a stem cell transplant because of their age and the indolent nature of their disease. For younger patients with rapidly progressing disease a transplant may be curative. There is not yet sufficient evidence to be sure that transplanted patients have achieved cures.

Most patients are able to enjoy a good quality of life for many years, with little or no treatment. For the minority of patients with more rapidly progressing or late-stage disease more intensive therapy may be required. In between 10% to 15% of patients the disease will transform into either prolymphocytic leukaemia or into a high-grade non-Hodgkin's lymphoma (Richter's syndrome)."

So that's the news. I don't feel ill. I do get tired if I do too much. I may have lost about half a stone (7lbs). I'm still the same grumpy old git. I've got a lot of things I need to accomplish. This blog is the first. More later.