Wednesday, 30 December 2009

Wednesday (I think)

This in between Christmas & New Year period is always a bit of a blur. The normal week is suspended and all the days blur together. I've just come through my third spell of chemo and so the last week or so has been strange anyway. I was OK until day 4 (Saturday?) when I got ill. I managed to take all five doses of chemo without spewing them up and I'm on the road to recovery again. This illness is strange. It's like six illnesses one after the other. Take pills, feel ill, get better. Take pills, feel ill, get better. In one respect I'm no different to how I was in October, which is different from, say, recovering from an operation or a broken leg. Then there's the "Next time I'll know what to expect so I'll be better prepared" syndrome. Which basically means putting everything on hold. You're either recovering from the treatment or getting ready for the next dose.

We once visited Portland Bill, near Weymouth in Dorset. Chris was about 18 months old and we remember that this was the time when he turned almost overnight from a baby to a toddler. I also remember carrying him on my shoulders along a street and forgetting to duck under a branch of a tree, so he copped a faceful of leaves. He's taller and heavier than me now, so I hope he doesn't hold a grudge.
Anyway, we visited Portland Bill. It was foggy that day and the foghorn at the lighthouse was sounding. I recall standing near the lighthouse. When the foghorn sounded it drowned out everything. The earth shook. It was impossible to think. Then it stopped and it was heaven for a few seconds. Then the fear of another blast on the foghorn began. The next seconds of silence were spoiled by the oncoming dread of the oncoming noise. When it started it was as bad as before. Each time it sounded was like the first time. It made no difference whether I knew when it would start or not. Eventually we left and went back to Weymouth, never to return. I couldn't stand the sound, or the anticipation of the sound.

I was reminded about that when I was lying in bed this morning. Actually, chemo isn't that bad as long as I take care of myself and don't get tired. I can cope. I wouldn't cope with living near a lighthouse with a foghorn. Ever.

Do you know the joke with the punchline "Tea break over. Back on your heads!"?

Monday, 28 December 2009


I spoke too soon. Yesterday was a bad day. Maybe I overdid it on Saturday. I helped Chris soundcheck his drum kit in the studio for an hour or so, and while I didn't do a lot, it was a lot more than I've done of late. Then I stayed up late watching TV. I didn't drink much either.

Something caused me to wake with a start on Sunday morning and boy did I feel ill. I went to the bathromm and lay on the floor for a whille, then ent back to bed. I managed to take some anti-naisea pills along with my chemo pills, and kept them down. I managed to eat some toast then slept til midmorning when I had a cup of tea and brought it back up. So, no more tea. I ate toast and sipped water and dozed/slept until Monday morning. When I felt ill again. There was nothing to bring up but I felt a bit better. However, my fluid intake for the last day has been a lot less than the litre and a half I'm supposed to drink, so I'm not out of the woods yet.

Saturday, 26 December 2009

Boxing Day

So far so good. It's day four of the current cycle of treatment and I'm doing OK. The preemptive strike with the anti nausea pills seems to have worked. I'm still feeling a bit tired but slept all night last night instead of the usual three hours or so.
I enjoyed Christmas Day. I even put on a glitzy cowboy shirt instead of the usual t-shirt. Chris & Heather were here in the morning, along with Jayne and her new man Ian and Rob who used to live with us last year. Jayne, Chris & Rob stayed for Christmas dinner, but then it was just Sue and myself in the evening. Typically there were three programmes of TV at the same time and we could only record/watch two, so I watched James May's Toy Stories and Sue went upstairs to watch her fix of Christmas soap, whilst recording "Strictly". We did watch Taggart together, taking great delight in saying "There's been a muuurrrrrrdaaahh" at various stages in the story.

All this fine Christmas fare (we still have half a turkey to plunder and it's now Boxing Day) has blinded me to the fact that there are no less than three unopened packs of Cadbury's Dairy Milk in the fridge. That's 3x 400 gramme packs, 1.2 kilgrammes of the best chocolate in the world- unopened! That's over 2 pounds of chocolate. This situation cannot be allowed to continue. We must strike and strike fast and decisively.

Who wants a bit of choccy?

Friday, 25 December 2009

Christmas Eve continued

As I was writing the last post I became aware of movement downstairs. The cat roams freely at night so I ingored it at first. It was when I heard the cutlery drawer open that I thought I'd better investigate. I went downstairs and Chris is in the kitchen making a sandwich. He'd walked back from the pub in the town centre and crept in trying not to make a sound. Having a few beers and trying to move around quietly are not normally compatible. So we had a cup of tea and I had an early breakfast and we sat and talked until four in the morning when I thought I ought to get some sleep.
I must have slept for all of three hours when a text woke me up. It was Tracy from Oz wishing me a happy Christmas. It was early evening where he was, but early morning here. Anyway, I got up and took the first of the day's dose of pills.
I've reserved a time slot just after the Christmas dinner for my next sleep.

No change there then.

Christmas Eve

I tried to take my pills in the correct order today. This meant waking up and taking two anti-nausea pills followed by seven of chemo. I had to take those on an empty stomach and with plenty of water. An hour later I took the normal daily pills and had my breakfast. My fingers and joints were very stiff this morning. I don't know if this is a side efect by my hands were very bad during the first month of treatment when I ended up in hospital. The morning went uneventfully. Sue was cooking and baking and I was unwelcome in the kitchen, so I retired somewhere quiet with the newspaper. I felt sleepy and a bit cold, so after a breakfast of bacon & egg sandwiches, shared with Chris who'd arrived home after driving 950 miles in the last 30 hours, through snow and ice, up to Glasgow and down to London, finishing in Leicester this morning. O for the energy and stamina of youth.
I took my second dose of chemo pills at lunchtime (only five of these) and, feeling cold and tired, fell asleep fully clothed, in bed. I reecall Jayne bringing me a cup of tea but when I woke it was late afternoon and the tea was cold.
After an evening of watching TV fully awake (my sleeping pattern is totally screwed) I decided that I ought to get to bed, so as to be at least semi-aware of events tomorrow.

Wednesday, 23 December 2009

Those were the days

This is a photo I took of a commemorative plaque beside the road just outside Robin Hoods Bay, North Yorkshire. I was watching a documentary about folk singer Eliza Carthy on Sky Arts tonight and Eliza's family live there. Seeing pictures of the narrow streets leading down to the sea reminded me of the plaque.
I hope that you will take time to read the inscription on the plaque. It tells you in a few words how times have changed. We've had a few inches of snow and the roads are impassible (impassable?). Part of the problem is the ineptutude of many drivers. They just can't drive when there's snow or ice on the road. They drive too fast, all accellerator and brake, and too close to the vehicle in front. Another factor is we drive all year round with summer tyres, and the tread is too shallow to grip when it's snowy. Then there's the nanny state with the health and safety don't drive, stay off the roads, etc, when it's clear to anyone with an ounce of sense that if enough people drove on the roads the snow would be broken down to slush and drain away. The problem with that solution is points one and two- bad drivers and summer tyres.
Anyway, please take time to look at the inscription.

Boiler update

We had a call from a boiler engineer this afternoon. He had the spares to repair the boiler but hadn't been told that the boiler was upstairs and he had to reach the exhaust vent in order to dismantle the boiler. We showed him where it was, and showed him the sheet of ice outside the back door which was caused by the leaking overflow. He didn't have a ladder or someone to hold the ladder steady, so we persuaded him that it'd be better to leave the spares and get another engineer around once we'd thawed out.
The boiler leaks but it's safe and it's working. That'll do until after the holiday.
We live in Northamptonshire and the engineer had been called in from the Forest of Dean to help with the backlog. They hadn't had any snow so far, so he was surprised to see how bad it was.

Chris has had a busy day. He had to get up early to drive to Coventry to pick up a load and take it to Glasgow. I kept in touch with him through the day. He said the roads were bad on the M6 over Shap and on the M74 near Moffat going up. He followed a snow plough as it removed about 12 inches of snow from the carriageway. He rang later on his way back from Glasgow and on to London to pick up his load for tomorrow. When I spoke to him he had done about 680 miles and had another 85 or so to go. It was raining so he could drive at 70. Once he's collected the load he has to deliver it to Leicester and then he can relax for a couple of days.

My first dose of chemo has gone without too much trouble. I'm a bit sore around my kidneys so I must drink plenty of fluids.

Tuesday, 22 December 2009

Tuesday again

One of my favourite Dilbert cartoons


On Monday afternoon I was in my customary position stretched out on the sofa when the phone rang. I got up too quickly and felt a bit dizzy. After that I felt unwell and in the end decided to go to bed early. I must have gone off to sleep right away. The next I knew it was the following morning and Sue is calling to me to wake up.
I got dressed and went downstairs and had breakfast, forgetting to take my medication, and then Sue drove me to the hospital. She dropped me off near the clinic and continued to work, and I walked to the clinic, entered and went straight to the treatment area and sat down. After about 15 minutes one of the nurses asked if I'd been assessed because they didn't have my file. Doh! I should have read the appointment letter.
So I went downstairs and booked in at the reception. A few minutes later I was called through by a nurse. I was weighed (twice, the second time without my Doc Martens as they didn't believe I'd put that much weight on). I put it down to my all-inaction lifestyle (and Cadbury's Dairy Milk chocolate) and I'm currently breaking the scales at a tad under 100kg. I might have to start doing some exercise, but I'm content to wait until after Christmas and the current course of chemo.
Once the consultation was over I went back to the treatment room and spent the next few hours connected to a drip and alternately reading the paper and dozing off.
I was finished by four o'clock. Sue came and collected me and we drove home through crowded streets. The town was gridlocked again, a combination of bad driving, untreated roads and too many people out shopping.
I'll start the dose of chemo tablets in the morning and hope that I've got enough anti-nausea tablets to get me through the next five days.

Monday, 21 December 2009

Monday morning

Apart from a brief foray to the shops on Sunday, I stayed in all weekend. Today I must go up to the hospital to have a blood test, ready for my next chemo session tomorrow.

One thing about all this enforced inactivity is that I read a lot, watch a lot of TV, and surf the internet. So I followed the latest Climate fiasco in Copenhagen with interest. I've already posted about the hypocrisy of it all, the private jets, the limos, the five star hotels, the deliberate misinformation and scaremongering, the falsification of facts and the rest of the charade. What puzzled me most was why bother? Why do all these fat cats turn up at these events and shed crocodile tears while they cry wolf about the fate of the world's poorest? Why? What's in it for them?
I'm beeing too cynical when I say that the richest nations look down on the poor with distain, and hate them because they produce nothing but children, and knowing that any attempt to improve their lot will only make them breed more. (Their opinion- not necessarily mine) So they stand on the platform in front of the world's media and give away money we don't have to the world's poorest nations, knowing full well that the people who need it won't see a penny, but the leaders of these poorest nations will soon have a shiny new jet so they can swan off to the next global fiasco.
So what's in it for the like of Gore and the others who have grown rich by peddling Man Made Climate Change? Those of us who are old enough to remember Watergate will remember a phrase used at the time "Follow the money". So, where's the money coming from, the money that will keep these vultures circling?
The answer, my loyal readers, who show up to read how my leukaemia is progressing, (please forgive me for using this blog as a soapbox)- the answer is Carbon Trading.
If you are interested and want to know more, can I direct you to this website?

That's it for now. Please keep warm (except my friends in OZ- stay cool mate)

Friday, 18 December 2009


We had a phone call at 7.30 this morning. The central heating engineer (who lives in our town) was going to call on us first because all his booked calls were many miles away and the roads were treacherous. There was a couple of inches of snow on the ground so Sue decided to walk to work rather than drive and I decided not to go in at all. I had hoped to sort the archive room out but that will have to wait until after Christmas now.
The engineer called around and took the boiler apart. His face was red when he found a bolt that he hadn't tightened last time he was here. There are other faults and he's ordered more parts, but it safe to use (as long as you empty the drip tray regularly)
While the engineer was working away I decided to listen in on Terry Wogan's last morning show. It was brilliant as ever and his producer Barrowlands chose all the tearjerkers that he could find. We had Nat King Cole singing "Stardust" followed soon after by Eva Cassidy singing "Over the rainbow". And another Janet & John story that was so full of single entendres I almost blushed. Wonderful stuff.

My back has cleared up and I only get the odd niggle. My immediate plan is to keep warm over the weekend and then it's back to the clinic for round three of the chemo on Tuesday.

I'm still shouting at the TV. There's plenty to get wound up about. I shout a lot when I look at the antics of the new Global Warming high priests. Their hypocrisy astounds me. They tell me that my car is responsible for the increase in CO2 and as a result we're all going to drown as sea levels rise. And they all arrive on private jets. So many that there isn't enough tarmac to store them all. They have to fly them out of the country and park them in Norway. Then they get into gas guzzling limos and drive around town- so many limos that they had to bring in over 2000 of them from all over Northern Europe. And they don't see the hypocrisy!

There are very few leaders who lived by the rules they sought to apply to the rest of us. I can count them on the fingers of one hand. (and have a finger or two left over).

I'm reminded of a man who was born in poverty and died a criminal, yet his followers changed the world.
No not Che Guevara, but Jesus of Nazareth. Just like the new Green Religion, whose high priests have learjets and live in airconditioned luxury (yes I mean you Mr Gore), the high priests of Christianity also live in palaces and attend summits and conferences and issue wordy statements and declarations. You can't change the world by issuing orders from above, and implementing them with a big stick. Plenty of despots and dictators tried that, and their statues are ground into the dirt.

That's enough. There's a TV that needs shouting at.

Wednesday, 16 December 2009

Wednesday afternoon

Good news. I contacted the insurance company about my leaking central heating boiler and they said they'd get on to it.
I hadn't heard by 3.00pm so I rang them back, explaining how a cupful of water gushes out of the unit every time it fires up. And how we can't use the airing cupboard to store the towels and sheets (because they get wet.

They told me that they can get someone out to look at it.

On Saturday.
Or maybe Monday.

Wednesday morning

I should rename this blog "living with a broken central heating boiler". Yes, it's sprung a leak again.

Tuesday, 15 December 2009


It's been a few days since I last posted, which is indicative of what's been happening, i.e. not a lot.
The central heating system packed in last Wednesday. I reported it but they couldn't get anyone out until Friday. The only real inconvenience was having to boil water for the washing up, as we have electric heaters and an electric shower, plus a gas fire in the living room.
The engineer turned up on Friday. I left him to it. After a while he said it was fixed and left. The boiler was now worse than before with strange noises emanating and the pressure gauge fluctuating wildly. I rang them back but they'd gone home. I rang on saturday morning and because I'd smelt something burning they sent the gas supply people to the house. They checked but couldn't find anything (I think it was the main circuit board burning out), but they stuck a "do not use" notice on the boiler. On Monday another engineer turned up. He'd been to the house before. (Did I tell you that this is the worse boiler we've ever known and it hasn't worked for more than six months at a time since it was installed?)
He took the unit apart, replaced all the parts that the other engineer was supposed to have replaced, renewed the pump and tested it (the other guy didn't test it but left in a hurry)
Anyway we now have central heating and hot water again, which is just as well because it's going to get cold.
Luckily all these call outs are covered by insurance. The boiler is six years old. It is a combi type and they are rubbish. Our old heater worked for twenty years without failing once. We only changed it because we had a conservatory built and the heater had to be moved. It's true that the more electronic gizmos and circuits that are used, the more likely they are to fail. We will have to change this boiler again soon and I'll have to look for something that is a little more reliable, probably German.
Other than thatI'm feeling fine. The pills for my back pain seem to have worked.
I'm going into work on Friday for an hour to see what needs attention before Christmas. Next Tuesday is chemo day.

Wednesday, 9 December 2009


Wednesday started the same as Tuesday. Backache and stiffness. Today I was bullied by Sue into doing something about it. She rang the surgery and they rang me. The upshot was that I had an appointment to see a GP this morning. He said that the painkillers weren't going to cure anything and what I needed was some anti-inflammatory drugs. And Omaprazole to stop the Naproxen messing my stomach. And some Diazapam to relax the muscles in my back. It's just as well I have an exemption certificate or that lot would cost over £20gbp.
I hobbled back to the car and Sue drove back to work. I called in to say hello while she got the prescription made up. It was nice to see everyone and catch up with news.
Sue then drove me home at lunchtime and she went back to work. She's under a bit of stress at the moment and her blood pressure is up a bit.
During the afternoon the central heating failed. I hope it doesn't get too cold because they can't come out to fix it until Friday. At least that's covered by insurance.

Tuesday, 8 December 2009


Tuesday started early. I woke up at 5.00 feeling stiff and with pain in my back and pins and needles in the legs. All the symptoms of a slipped disc. I got up and mooched about, started to read the paper and got in and out of the shower in good time to be collected by Sue to go to the hospital. We arrived at the Pathology clinic to see the biggest crowd waiting for tests. Because my appointment with the specialist is dependent on having up to date blood tests, I was given a different waiting room number to those who just turn up and wait their turn. Usually this means that we can be in and out of the clinic in five minutes. I sat down and heard the number 27 called. I looked at my ticket- number 33. This meant 30 minutes wait at least. Oh well, I'll be late for my appointment at the clinic. I read the paper and was eventually called and they took my blood.
We then walked through the miles of corridor to the Centenary Wing. When we arrived the place was full as well. Every seat was taken. The receptionist said that they were running about an hour and twenty minutes late. Some more chairs were found and we settled down with the paper. I read the paper from cover to cover and also completed the crossword and the codeword puzzle.
Sue went to the Outpatients Canteen and returned with a coffee. It was almost three hours before we were seen. My doctor apologised for the late running. They were trying to see all their patients before Christmas. I think one of the doctors was off sick as well.
The consultation went well. My blood tests were encouraging. The leukaemia cells were once again negligible, and my white cells were low, which means that I'm still susceptible to infection. I explained my slipped disc and he thought that it'd probably get better on its own. He was surprised to see that I'd put on half a stone in the past fortnight. (I'm not. I've been eating like a horse, and gorging on Cadbury's Dairy Milk, and taking no exercise.)
So that's the story for now. I'm going to have my next round of chemo on schedule, starting on December 22nd. The doctor said that I could put it back a week, but I know what to expect now, so I'm happy to get on with it.
I ought to get out more. The doc says I should be OK as long as I stay away from large crowds of strangers.


Monday will be remembered for my backache and my inability to get comfortable anywhere except in bed. So I got up and had breakfast, read the paper, couldn't get comfortable and so went back to bed. Woke up and had lunch. Couldn't get comfortable because of the pain in my back so I went back to bed. Woke up when Sue made dinner, went back to bed because I couldnt get comfortable.
You get the picture?
Painkillers work for a while but there's a restriction on how many you can take in 24 hours. Anyway I slept until 5 this morning when I got up and started on the merry go round again.
Off to see the specialist on Tuesday morning. I'll ask him about this.

Sunday, 6 December 2009


I felt well enough to dress up warm and go out with Chris on Saturday afternoon. We drove over to Corby to collect some equipment that we'd put in for repair and whilst there, we called in to the catalogue clearance warehouse, which deals mainly in ex-Argos stock. There were a lot of people shopping, and there was a roaring trade in flat screen TVs at cost price or less. I noticed pallet upon pallet of blueray players and dvd recorders, two electrical gadgets that didn't exist five years ago, and now can't be given away.
Twenty five or thirty years ago it was VHS vs betamax video systems. One was relatively cheap and the other gave better results. What isn't always acknowledged is that the porn industry's decision to opt for VHS that sounded the death knell for Betamax. During the 90s there were a number of video systems using laser discs vying for supremacy. Once again, the porn industry chose DVD and the rest is history.
I wonder if the warehouse full of Blueray players at discount price could have anything to do with the rise of the internet, and sites like Youtube, where you can watch video scenes from almost every TV programmes, film, concert and pop video for free?
I watched TV in the early evening, then went for a lie down. I woke up just as Sue was going to bed, but being wide awake decided to watch Match of the Day. It's always good to see Chelsea being beaten. Unfortunately it's a rare occurrence these days. Then I started flicking channels and went to bed late. Woke up with backache. Went back to bed as couldn't get comfortable. Slept til 3.00. Got up to meet daughter Jayne's new fellow. Was persuaded to try Chris vibrating seat. Later I noticed that my backache had eased. Was it the seat, or the two painkillers I took before coming downstairs?
The rest of Sunday involved sitting in a comfy armchair alternately reading the paper, dozing, and watching TV. Sue cooked a lovely dinner.
Lazy days.

Following on from my comment about Youtube, I was talking to Chris about bands that I saw back in the 70s, and I mentioned the Sensational Alex Harvey Band. Here's a clip of the band on the Old Grey Whistle Test playing "Delilah". I love the instrumental section. very visual.

Saturday, 5 December 2009

Saturday morning

I woke up at silly o'clock this morning. My back is still giving me grief. I got up and had some breakfast and took my pills. Sue went out early to take a friend shopping so I checked my emails and had one from my friend Bob Howe in Sydney.
Bob came over with Nicki Gillis back in the summer and we played a number of dates including the Great North festival near Castle Barnard in County Durham.

Bob found a video of our performance of the Eurythmics song "Thorn in my side" on Youtube, so here it is as a reminder of last summer, and a foretaste of next summer, when Nicki will tour the UK and Europe, and I will be back on bass guitar duties.

We've still got some spare dates, so if you're looking for a great evening's entertainment please get in touch.


Sue says that i must be feeling better because I've started shouting at the TV again. Well, there's plenty to shout about. The whole Man Made Global Warming conspiracy is starting to unravel as people realise that lies and spin are part of the scientific process as well as the political one.
I have plenty of time to surf the internet and I recommend you drop by for an insight into what's going on. The AGW scaremongers would have us believe that today's temperatures are unprecedented and it's all our fault and produce a fatally flawed "hockey stick" graph as proof with no argument. Other scientists have asked for the data so that they can independently verify it, but no, they won't release it.

So what's this got to do with my current health status? Try this.I'm feeling unwell but don't wish to consider the fact that I might have a serious illness. I pay a specialist to examine me to give me a clean bill of health, and to disregard any symptoms or results that may prove contrary to my preferred diagnosis because they are an inconvenient truth. I obtain the report and tell the world that I'm healthy and have a doctor's report to prove it. My loved ones and other concerned individuals see the report and contrast it to my actual physical condition and are righly concerned. Are they sure about this? Did they run tests? All of them? can we see the results of these tests? Why not? Can we take the data and have it independently verified? Can we have a second opinion?

All right so my analogy is backward. I'm really ill but wish to convince the world that I'm well. The global warming scaremongers are doing the opposite. They earth is behaving much as it always did. The weather is variable. It's been a lot hotter in the past and it's been a lot colder. They are trying to convince us that the Medieval Warm Period and the Little Ice Age (which is the story of the planet's weather in the last 1500 years) didn't exist and they have the figures to prove it. OK, show us the figures. Let us have a second opinion on that.

If I were seriously ill but wished to make it known that I was healthy and well, people would question my motives wouldn't they? What is he hiding and what does he stand to gain or lose by this? So it is with those who are trying to tell us something that just blatantly isn't true. What are they hiding? What do they stand to gain by lying to us?

As you can tell, I am feeling better. Apart from severe back pain from when I put my back out while throwing up last weekend.

Another post soon

Thursday, 3 December 2009


I seem to be recovering well from the treatment last week. My hunger appears undiminished- take this afternoon as an example.
I had a can of soup for lunch, with four doorsteps of crusty bread and a cup of tea. I finished that and still felt hungry so I ate an apple. I nodded off for an hour and Chris came in. he was looking for something to eat so I persuaded him to go to the shop as I fancied a cake or a bun and our cupboards were bare. He returned with a pack of Chelsea buns (yum) and a danish pastry. I'd described a Chelsea bun but he came back with the danish as well as the buns. It tasted lovely! He'd also bought some crumpets and I smelled them as he buttered them from the toaster so I had a couple of those as well.
Hmmm... what's for tea?

On a different note, I had to pay for a prescription at the hospital pharmacy last month, so we looked at getting an exemption certificate. It took a bit of filling in and obtaining doctor's signatures and rubber stamps, but it arrived in the post yesterday the 2nd December.

What I didn't realise was that I'm entitled to free prescriptions when I reach 60 (along with my bus pass, and that's in about three weeks.......

Wednesday, 2 December 2009

Weds 2nd December

I must be feeling better. I was hungry all day yesterday and I'm enjoying the taste of my food. I had chicken soup with 4 doorstep sized slices of bread at lunchtime; steak & kidney pie and chips covered with HP sauce for tea; ate half a bar of Cadbury's Dairy Milk during the evening followed by a cheese and marmite sandwich for supper. Add in the apples, toast, cereals, bag of crisps and copious cups of tea, not to mention eating a pomegranite and getting juice everywhere and you get the idea.
When I started the treatment I weighed over 100 kg (about 15 and a half stone)and When I was weighed last week it was down to about 94kg which means I've lost a stone or so. I looked in the mirror this morning and thought I looked a bit thin in the face so I hunted out the bathroom scales. They were in the back of the airing cupboard. Sue says that they're not accurate, but I thought I'd weigh myself anyway. If they're weighing heavy I'm in trouble because even with eating all this grub I'm down to 93Kg or 14 st 9lb.

At any other time I'd say a diet that lets you stuff your face all day and still lose weight would be a winner, wouldn't you?

Enough. I'm off for a snack.

Tuesday, 1 December 2009

Tuesday morning

As Monday progressed I felt well enough to sit downstairs and start work on my accounts for this year- something that I dread even when fully fit. I managed to file 2008-9 with HMRC by the end of October this year, after what seemed like interminable phone calls and aborted sessions online. Most years I'm so wound up by the process that I put off filling the following year's accounts until the last moment. As my music career has been cut short by events I'm taking this opportunity to start work early.
I was also conducting a conversation by text with my son Chris, who left home on Sunday evening at about 10.00, drove to Durham, parked up for a few hours, loaded and drove to Glasgow, and then drove home via Northampton, a distance in excess of 700 miles in around 18 hours. I've driven to Truro in Cornwall and back in a day, stopping only for a walk on the beach at Perranporth, and I drove over 400 miles in a day and played a festival when on tour with Nicki Gillis last summer, but 700 miles on Britain's roads in a day is a lot.
Anyway, the upshot was that I ended up more tired than I realised, and was quite groggy when I dragged myself to bed at about 11 o'clock last night.
I must take it easy today.

Monday, 30 November 2009

Monday morning

My nausea cleared up as Sunday progressed, and I slept for most of the afternoon. I awoke feeling hungry and Sue cooked a meal for me which was lovely. So, after a good night's sleep I'm feeling much better.
I'm going to continue taking the anti-nausea pills for a couple of days in case the sickness returns.

Sunday, 29 November 2009


Saturday just drifted into Sunday. I stayed in bed all day. Slept a bit, read a bit, slept a bit,etc. I found that I could keep toast down so I had toast several times with the highlight being scrambled egg on toast for my dinner. I woke up at about 3.30 this morning with a growling stomach. I got up and tried to drink some squash, then went downstairs. At about 5.00 the inevitable happened and I was sick. what happened then was strange. Sue had got up and was helping me clean up when I coughed as I was blowing my nose and something popped in my lower back.I fell to the floor to get some relief from the pain, which eventually eased enough for me to get up and go back to bed.
I took some anti-nausea pills before I went off to bed and they stayed down, so I felt confident enough to take my morning drugs at about ten o'clock and they've stayed down as well.
Half the problem is that I've been told to take plenty of liquid, but if I drink too much, my body rejects it. So how much is too much? How much is too little?

Saturday, 28 November 2009


Not much to report about Thursday & Friday except that it was getting harder to drink the quantities of fluid that I'd managed a few days previously. I also had a heaviness in my stomach as if I'd eaten too much, and this was constant.
Sue woke me up early this morning as she was due to go see her sister for the day. I took my pills and drank some tea, all the while my stomach growling. After a while I took some anti-nausea pills and had a couple of mouthfulls of cereal.
Bad move. I started to heave and only just made it to the bathroom, where I threw up all that morning's drugs. I went back to bed and slept all morning. Sue cancelled her day out and busied herself around the house.
I've had some toast and kept it down. Now I'm about to take my last dose of chemo.
It's like a cumulative poisoning I think. At the beginning of the week I can take it all in my stride, but the cumulative doses of drugs just wear you down. I expect to feel this low for all next week, but I hope I don't.

Wednesday, 25 November 2009

Weds 25th November

Having a lazy day. Breakfast included about a dozen pills, and I had another 5 before lunch. Other than that, I'm alternating my time between reading a book, doing the crossword, drinking tea and snoozing. Rather a lot of snoozing in fact.
I hope it won't mean I'm wide awake all night.
I have to drink lots of liquid, and this has an obvious side effect, so must dash to the loo!

Tuesday, 24 November 2009


I've just returned from the second chemo session with no side effects except drowsiness from the piriton pre-med. I've got a big bag of pills to swallow in the next few days. As long as I remember which day it is I'll be alright. I take one drug on Mondays Wednesdays and Fridays only, another drug is six tabs one day and seven the next, while a third is only four a day (but an hour before food).
I'll have to draw up a spread sheet to keep up.

Monday, 23 November 2009

Monday 23rd November

I've just got back from the hospital. I had to have a blood test and then I saw the specialist who was pleased with progress. My leukaemia cell count is very small and the platelet count is going up. I've been feeling generally OK in the last few days so I'm booked in for the next round of chemo tomorrow. They give me Rituximab by drip, with the other two drugs taken daily for the next five days. I hope I don't get any more side effects like last time, when I ended up in hospital for a week.

I just love the names of the drugs that I'm prescribed. I can't pronounce half of them. Like Sri Lankan surnames, they have too many syllables. My belief is that they select the names by picking letters from a scrabble bag.

I've lost about half a stone since treatment started, and there are those who'd say that was a good thing.

Sunday, 22 November 2009


It may be down to the fact that I had a late night on Friday night, (one can only stay in bed for so long), but Saturday left me drained. Some friends called in during the afternoon and stayed for an hour or so, but that shouldn't have left me feeling dog tired and going to bed at 6.00. I dropped straight off and slept until about midnight. I felt quite thirsty and recalling how I'd got quite ill through not drinking enough a few weeks ago, I got up and made a cuppa followed by some breakfast cereal.
I sat and watched TV and drank tea until the early hours and then went back to bed.

I woke at about ten o'clock with a sick headache, so my morning pills were bolstered by some paracetamol. Sue got up soon afterwards, and after visiting a friend for a cup of tea, bought a newspaper,leaving me to sit in the chair reading about the latest revelations of corruption in high places and infidelity everywhere else. It's true what they say about political sleaze. With the Tories, it's always about sex, with Labour it's always about money.
A couple of hundred years, when the average peasant was lucky to earn fifty pounds a year, they paid high court judges five thousand a year, in the belief that as they were so rich they couldn't be bought. Did it work? I don't know. Would it work today? Pay our politicians more so that they wouldn't fiddle their expenses? Somehow I don't think so.

I got up from the chair to go to the kitchen and had to hang on to the furniture as I felt quite dizzy. I felt like that when I was ill a few weeks ago, so i'll keep an eye on it. My temperature's fine, but I feel quite weak. I can't believe how tired I get when I do anything different from my normal routine.

Saturday, 21 November 2009


We had a request from a friend for a PA system for Friday night. I said that we should do it, because the person had helped Chris on the video shoot earlier this year. Chris plays drums in an Iggy Pop tribute band and they needed to shoot a showreel for the promoters, and Millsy works as lighting technician at the venue they used. Anyway, Chris drove overnight to his pickup point (he had to take a load from Runcorn in Cheshire down to near London Airport and then on to Bristol).

I kept in contact with him during the morning and then decided to draw up a list of all the components that he'd need. This was almost the first work I'd done in weeks. later, when he came home we used my list to select all the leads and cables that were needed. No, I didn't load the van.

After that it was Strictly followed by Children in Need, slouched in front of the TV.

Sue came in early from work and we had a cuppa while the TV played in the corner. There's a show on ITV called Golden Balls. I seldom watch it but I know that its host is onetime folk singer turned observational comedian called Jasper Carrott.

Back in the early 1970s I joined a traditional folk group, playing guitar, learning mandolin, and enjoying the craic. When we ventured outside of London to a Festival, we'd invariably set up a session in the beer tent, and I recall seeing Jasper sing his version of "12 days of Christmas" and "bastity chelt" at the Cambridge Folk festival of 1972. A few months later our band, now named "Captain Swing" played support to Jasper somewhere in deepest Enfield. I like Jasper. Like Billy Connolly, he started as a singer/musician, and like the Big Yin, he found that the audiences preferred the introductions to his songs, so that the songs grew fewer, and the comedy took over.

Anyway, back to Golden Balls. It's tosh, and, like Deal or No Deal, the contestants don't have to answer any questions in order to win. All they have to do is bluff to the other players about the values of the balls they hold. No problems so far, except when the contest is whittled down to the final two, they each try to convince the other of their honesty, and that they should share the prize pot. They then reveal their hands, either "share" or "steal". If they've both chosen to share, they share the prize. If they both choose to steal, they get nothing. If one says he is willing to share but reveals the "steal" ball. He wins the lot, and the honest one get nothing.

Call me old-fashioned, but I couldn't live with myself if I "won" a fortune by lying. I like quiz shows where the contestants have to display knowledge of some sort.

From politicians who milk the system to their advantage to pop stars who don't sing on their own records to tea time quiz shows that reward dishonesty, we live in strange times.

OK rant over. It's time for breakfast. Today I will be mostly watching TV.

Thursday, 19 November 2009

Thursday 19th November

So, did I sit in bed and read the paper, or did I go downstairs? Choices, choices!
Today I mostly sat in bed.
Chris got back late last night from his driving job, and we sat talking until the early hours. I had every intention of helping him with his books today, but he didn't get up until lunchtime. He had written a list of things to do, and doing his books was on it, but somehow there were other more pressing things to do. Funny that.

I decided yesterday that I'd start doing my accounts for 2009/10. You know, actually get ahead? Well, that won't get started until at least tomorrow. Funny that.

It was quite gratifying to read a friend's facebook posting to find he'd quoted from my blog. Thanks to everyone who stops by to read my posts.

It's difficult to know what to write. Some days I'm tired but not sleepy, and other days it's the other way around. I can never tell which it's going to be. Friends ring and ask how I am. Compared to yesterday ot this time last year? I feel OK today, but I haven't walked anywhere, or carried files around, or sat over a hot computer or switchboard. I haven't driven miles, unloaded the van and set up the kit. I haven't spent all day in the studio working on a recording, playing, listening, mixing.

I will do all those things again, but I'm only a few weeks into a treatment that is supposed to take six months. I'll take each day as it comes, and be glad that I don't feel anything like as bad as I did a week or two back.

Wednesday, 18 November 2009

Weds Nov 18th

On Monday I sat in bed to read the paper. Yesterday I thought I'd do something different so I sat downsatirs in an armchair and read the paper. That's how different the days are. I sneaked downstairs on Monday night at around midnight because I heard voices. Chris had just got in from a rehearsal with Willie Sherkle and they'd just unloaded the van and were having a cuppa. Even though I only stayed long enough to say hello and get myself a drink, it was good to speak to someone different. Monday wasn't too bad actually, as daughter Jayne also called around for tea.
Yesterday I spent an hour or so entering figures on a spreadsheet for Chris. In the evening Sue and I watched some TV together, before she went upstairs to watch "I'm a celebrity". I can't stand the programme, although it has a hypnotic grip. Monty Python did a spoof TV quiz show back in the 70s. It was called "Spot the brain cell" and was subtitled "30 minutes of ritual humiliation of the old and greedy". How prophetic.
I spent the next few hours flipping channels and reading my book, until I realised I was very tired and should have gone to bed.
Today I will sit in bed and read my paper......

Monday, 16 November 2009

Monday 16th November

I spent Saturday afternoon dozing in front of the TV, trying to get excited about England's inept display against Argentina. Then I dozed some more, staying awake long enough to watch Strictly. Chris & Heather went out for the evening/night, so Sue and I watched some more TV (dozing really) before she dragged herself off to bed sometime after 11.00. I'd been in bed all day, so I decided to stay up a little longer. I flipped channels looking for something to watch.
Women treat the zapper differently from men. They use the zapper to see what's on, while men use it to see what else is on.
Before I knew it I was starting to get tired. I checked the time. 4.30. Chris wasn't home yet (they turned up at about 7.00 after celebrating a friend's birthday).
So I went to bed. And woke up at 10.00, took my pills, had some breakfast and settled down with the paper. Sue kept me supplied with drinks and even brought me dinner.
I stayed in bed, reading and sleeping. Sue came to bed and I slept on. I woke up at about 4.00 (having spent 23 hours in bed)and made some breakfast. I sat in front of the TV until about 6.00, when I realised I was dozing again so I went back to bed. Sue got up and went to work, leaving me in bed reading the paper. Enough is enough. I got up, had a shower and went downstairs for my second breakfast. I watched tv until lunchtime.
The only exercise I get is walking to and from the bathroom, and walking up stairs. Sometimes I really push the boat out and use the upstairs bathroom when I'm downstairs.
Prior to my diagnosis, my only symptoms were that I got tired. I don't know if I could manage half a day at work, let alone a full day. My resistance to infection is so low that I can't take the risk and go in to work, although there is work for me to do.
Only a week to go before my next bout of chemo.

Saturday, 14 November 2009

Sat Nov 14th.

My urticaria keeps kicking in and it's driving me mad.Thanks goodness for hydrocortisone cream.

My friend Heather posted a card through my door yesterday. It was a painting of a Cornish fishing boat and inside the card she's written this:

"Be encouraged by the words of one of my favourite songs of all time!

Don't be surprised at all the trials you may be facing
But realise, there is a prize that's really worth chasing
It's your salvation, God is still good.

God is still good, he understands,
In every life, there is a plan.
He'll pick you up when you fall down
God is still good, God is still good.

To everything, there is a time, a place and a season
To every life, there is a rhyme, a race and a reason
Hold on to this, God is still good.

God is still good, in Him will I trust
God is still good, win lose or bust
Ashes to ashes, from dust to dust
God is still good, God is still good."

Which is a song I wrote about 10 years ago when I was working in a plastics factory making black dustbins and yellow builder's buckets. I lived with the song for 5 years before recording it on my "Ain't Quitting" CD, and the song was selected for constant airplay on a Christian radio station in the autumn of 2003.

Thanks Brian & Heather, for your card and kind thoughts and prayers.
Thank you everyone who emails me, sends cards, texts, and adds comments to the blog. I appreciate you all.

Friday, 13 November 2009

Friday 13th Nov

I slept in my own bed last night. I still have a few aches and pains and my urticaria (hives) was bad last night but I got through without scratching myself to death. I woke early this morning and had a shower followed by breakfast and then back to bed to read the paper. I've decided to keep to hospital routine for a few days, so that also included a nap mid/late morning.
Sue came home for lunch so we shared soup and rolls. I'm going back to bed to continue reading my book (this will also include a hospital regulation nap)
I'm feeling OK. I want to stay that way so I will maintain the hospital cleanliness routines and stay in quarantine for the weekend. The weather's going to be wet and windy so I wouldn't be going far anyway.

Thursday, 12 November 2009

Back home again!

Hi everyone, I was passed fit to return home today. There are still a couple of niggles to deal with. My urticaria (Hives to you) seems to want to kick in again. There was a particularly lurid episode at around 7.30 last night. I've had a lot of blood samples taken from my arm and the skin is a bit sensitive. It suddenly started itching and after a few minutes was red and blistered. I showed it to the duty doctor and asked if I could put some hydrocortisone cream on it. He agreed, and within 30 minutes it had completely cleared up without a mark showing, no redness, anything.
Then there's my chest, my other elbow, etc all of which seem to have spontaneous outbreaks of itching and blistering. The doctors have now decided that the treatment isn't triggering it, so one less hurdle to freedom.
I've now got to set up a regime at home that will let me keep track of things, note any wierd happenings, and not be scared to ring the hospital when I feel ill.

They tell me that I was very ill when they admitted me on Wednesday last. My kidneys were struggling, my blood pressure was very low, 71 over 67 at one point, and I had diarrhoea. Not good. I'd actually started feeling ill on Saturday and I should have called them then. I did ring on Monday and they pumped me full of fluid but had no bed for me. I then had all manner of complications including severe arthritis in my hands, which ballooned up. I couldn't grip or pick anything up. Mind you, my hands were back to normal the next day.
Then my feet swelled up. I couldn't get a sock on, let alone my new slippers. I diuretic injection soon sorted that. My liquid output soared. I was in quarantine and had to use bottles to pee into. The nurse was bringing them in by the armful.
Eventually the doctors sorted out what was caused by my condition, what was caused by the drugs, and what was down to me. My blood pressure has been steady for almost a week, and the doctors finally agreed to let me go home today.

My next bout of chemo was due to have started next week, but it's been put back a week to give me some time to recover. My blood tests are showing negligible amounts of leukaemia cells so teh treatment is working.

Monday, 9 November 2009

Monday 9th November 2009

At last I am able to get back on to the site! Dave is still in hospital and we are hoping to get him home soon.. He is sleeping a lot but has had various things going on since I last wrote. He has a rash a reaction against some of the medication he has been taking we think, he has swollen feet and his hands at one point were swollen. He is off the drip now and his blood pressure seems to be holding up. Next week he has his second lot of chemo!


Wednesday, 4 November 2009

Wednesday 4th November 2009

After having a fairly sleepless night Dave woke feeling really unwell. He telephoned the Centinary Wing of the hospital and they called him back telling him to go in. They confirmed his blood pressure was very low and he was dehydrated. He spent the day on the ward having various amounts of liquid pumped into him. It was also decided that they would admit him and there would be a bed for him after At he was taken to Lilford ward at Kettering General Hospital. I left him there just after cam home, had some tea and went back to the hospital with our daughter Jayne ready for visiting at unbeknown to me visting had been changed and was from!! Well we had 10 mins with him. He is looking better but still getting stomach cramps. He is in a room on his own and cannot leave the room for fear of infection because he still has diarrhoea. Hoefully he will be back home soon.


Tuesday, 3 November 2009

Tuesday evening

I had dinner and took my drugs as normal, but then started shivering so I covered myself with a quilt. Soon I had backache and stomach cramps, which led to the inevitable trots. I took some anti nausea pills which helped for a while but another trip to the toilet put paid to that.

I'll ring the clinic in the morning. Whether they'll see me is debatable because of the risk of cross-infection.

All these secondary symptoms are bringing me low
There was an article in the Mail today

Copy this link to your browser to take you there

Tuesday morning

After sitting at the computer writing the last blog entry I felt quite cold, so wrapped up well and went back to sleep, only awakening at 9.30.

The good news is that my hands aren't anything like as bad. I can now grip with my left hand.
The bad news is that my chest is hurting and I fear that I'm going down with a chest infection. I get trachyitis most winters (an adult form of croup) and this could be the onset. I was hoping that my stomach had settled down but no. I've still got diarrhoea. Which is not good as it may mean my drugs go straight through. Oh, and a temperature of 38.2.

I rang Staff Nurse Heather to tell her and she said she'd report it, but didn't think they'd want to see me.

Monday night

What a couple of days. I started feeling unwell on Saturday afternoon/evening. There was nothing specific, just a bit achy and a slight tightness in my chest. During Sunday I began to get pain in my left hand. I have some arthritis in my neck and hands and it felt like the onset of that. As the day progressed the pain in my hand got worse.
I know it's bad when I can't even hold my guitar. During the night I couldn't even hold a cup, and as for unscrewing pop bottles..forget it.
I had another restless night on the sofa and in the morning decided to ring the clinic.
I spoke to Staff Nurse Heather and explained my symptoms, adding that I'd been reading those little slips of paper that you find in the drug packaging- otherwise known as the Hypochondriac's Charter.
The upshot of all this is that I was called into the clinic for some blood tests, a chest X-ray and examination by the doctors. They are unsure if the arthritis is connected to my leukaemia treatment, so they wanted to keep me in for observation for 24- 48 hours.
The only problem was that there were no beds available. None. Zilch. Zip.

So they gave some more anti inflammatory pills, more antibiotics and sent me home.

Which is better. I crashed out when I got home, only waking for my dinner.
I woke up at about midnight and feel better. My hands are still sore but the swelling has gone down and I can pick things up.

When I mentioned that we had a parrot, the specialist went "oh". Parrots can pass on pneumonia, so Billy will have to move out or move on. Bugger.

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.