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.