Sunday, 28 March 2010

Sunday 28th March

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

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

Thursday, 25 March 2010

Thursday 25th March

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

That's all really.

Monday, 22 March 2010

Monday 22nd March

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

Sunday, 21 March 2010

Sunday morning 21st March

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

Tuesday, 16 March 2010

Tuesday 16th March

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

Sunday, 14 March 2010

Sunday 14th March

It's almost six weeks since I had my last bout of chemo. My next course is due in about ten days.
Since the last round of chemo I've been laid low with a cold and spent almost a week in hospital. And I thought that I was getting better.
I was due to appear at a charity festival this weekend and sing a few songs. I had to pull out because I'm just not strong enough, and the doctors told me that my immune system won't cope with any infection at all.

I was fed up with that, but not as fed up as I was when the doctors told me that I won't be able to tour this summer.
Here are the dates: Assume I have my chemo next week, the third week in March, and I'm well enough to have the final course four weeks later, during the third week of April. That will only leave six weeks to the start of the tour. It has been six weeks since my last chemo. I know how I feel today, and with the best will in the world I can't see myself surviving thirty shows in six weeks, without all the travelling and humping gear. I'm gutted, and that's putting it mildly.

I've been playing my stick bass a lot, and I'm getting better at it. I decided to try my luck and play along to a concert dvd this evening as there was nothing on the TV. I'm knackered, and I was sitting down!

On the plus side, my temperature has remained normal all week, and I finished my antibiotics today. I'm hoping that this heralds the end of that vile taste in my mouth. My scleritis is responding to the eye drops, although I hate applying the drops.

I'm housebound again, except for one trip to the eye clinic this wednesday.

Friday, 12 March 2010

A good night's sleep

I was ready for bed before ten last night and went straight to sleep. It was lovely having enough room to move and enough pillows. The next thing I knew it was seven this morning and Sue was getting ready to go to work. She'd lost half a day yesterday and her work still needs to be done.

After a cup of tea or two I was almost ready to face the day. Sue managed to get some eyedrops into my eyes and went off to work. I sorted out my pills for the day (seven now and seven later) and took my temperature which was OK.

A friend rang me last night to ask how I was getting on. I brought him up to date and then we spent ten minutes or so looking at our houses on Google street view. I've not been to his house since he moved and his new house looks very nice. Mine of course had two white vans on the drive and one in the side street. I can tell almost to the day when the google car drove down our street based on that information.
Being curious I had a look at my place of work. The google car never drove down our street. Anyone who has ever driven into Kettering town centre will tell you that it's a nightmare. The brief given by the council to the planners was to keep traffic out of the centre and it works at treat. You drive into the centre, get caught up in the one way system and before you know it, you're heading out of town again. It seems the google car got caught out as well, because he took an illegal left turn into Gold Street and drove through the pedestrianised section to make his escape. The evidence is there for all to see.

The drugs I've just taken have left a vile taste in my mouth, so I'm off to find some tea and something to take away the taste.

Thursday, 11 March 2010

Friday- Thursday - part four

I was reading through recent posts on my blog and as recently as two weeks ago I was saying how well it was going, piece of cake, nothing to it, nothing to report, etc.
How quickly things change.

I must admit that the past week has fundamentally changed my outlook. My hospitallisation happened overnight, in a blink of an eye. I cannot now take anything for granted. Two weeks ago I was driving my van, seeing people, even spending an hour or two in work. I've had to relearn a few things.
My stamina isn't great, but it's a whole lot better than my immune system.
I walk to the shops or drive around. I get tired quickly.
OK, I understand that and can make allowances.

What catches me out is my lack of an immune system. I caught a cold and it laid me low. I developed thrush and it put me in hospital.
I can't plan for that.

Earlier this week a patient died in the next room to mine. Without going into details, the family were from an Italian background. There were fifteen people around the deathbed, from brothers and sisters down to grandchildren. The hospital rightly allowed them unlimited access, so there were always people outside, and although they whispered most of the time, it was still noisy.
During the evening's visiting time I could hear the patient coughing and retching. It sounded like their death rattle, even with the doors to both rooms closed.
Then the fire alarm went off. They said that someone had burnt some toast in another ward. We had to wait until 9.30 for the alarm to be switched off. When the all clear was given, the family came back on to the ward.
One of the nurses asked me to close my door and I agreed. I lay in bed with the lights off, trying to sleep. The patient died at about 11 o'clock and I could hear the cries of grief as I lay in the darkness. It was not nice. Not nice at all.

I'm with Woody Allen when he says that death doesn't scare him. He'd just rather not be there when it happens.

I have no idea about the patient's condition or how long they'd been ill. Who knows if they were carefree and in full health a few weeks or months ago?

I just know that I have a much greater understanding of my mortality and I'm going to have to think long and hard about my future....

Friday- Thursday part three

The problem with this sort of blog is that the latest post is at the top and sometimes it would read better if the oldest was on the top. It would certainly help the narrative.

My eyes started playing up last week. One eye was slightly bloodshot and the eye hurt. I also had it in January and it delayed my treatment for two weeks.
The condition is called scleritis. According to the internet-
"Scleritis is caused by an immune response to something such as an infection, trauma or a virus which then ‘cross-reacts' with the eye. While we want our immune system to fight infection we do not like the ‘side-effect' of this process which can cause conditions such as Scleritis and Arthritis (joint inflammation). It is surprising how many Rheumatological and eye conditions go together."

So that may explain the arthritic attacks in my hands as well. Treatment involves eye drops four times a day. I hate eye drops. I cringe away when I'm trying to apply them. If someone else applies them I reflexively shut my eyes as soon as the drop hits the eye (or even before).

I didn't bring my eyedrops with me when I was admitted. I did have some artificial tears that the eye doctor recommended I use if my eyes get tired, so the nurses used those for the first few days.
It didn't stop my eyes from getting more sore and inflamed. It spread to my other eye.

Finally an appoinment was made for me to attend the eye clinic on Wednesday afternoon. I was sat in a wheelchair and a student nurse walked me through the corridors and down two lifts to the clinic. When I got there I realised I didn't have my glasses so she had to go all the way back to get them. She returned with my glasses and told me that she was needed on the ward and that I'd have to ask the clinic for a porter to take me back.

Now I'm big enough and ugly enough to look after myself, but I have to admit that I felt very vulnerable. The Eye Clinic is a crowded and claustrophobic place at the best of times, but when you're sitting in a wheelchair dressed only in pyjamas and a dressing gown it's worse.
Luckily the doctor who saw me back in January picked my file up and I was seen fairly quickly, that is, only an hour and a half later than the booked appointment time.
She looked into my eyes with her gadgets, pronounced that I had the same condition as before, wrote out a prescription and told me to come back in one week.

All I had to do then was wait for a porter. Luckily he was there within a few minutes and he took me back to the ward via the service tunnels deep beneath the hospital. It cut out one lift and I had a scenic ride as well.

Now all I have to do is get the bloody eyedrops into my eyes.....

Friday- Thursday part 2

I arrived back on Lilford Ward during the afternoon visiting time. It was like I'd never left. I even remembered some of the nurse's names. Once again I had a room of my own.

I spent the next few days reading, (I read a book a day) doing codeword puzzles ( I completed a book of 60), reading the newspaper, and blagging extra cups of tea from the staff. I didn't bother with the TV or radio.

My obs (Blood pressure, temperature etc) were taken very four hours. I had antibiotic injections three times a day, plus various pills. One pill gave me a terrible taste in the mouth, like chewing dandelions. They took blood samples every couple of days.

I had regular visits from Sue and Chris. It wasn't so bad. I didn't feel ill as such. I just couldn't do anything. From Sunday to Tuesday I doubt if I took a hundred steps a day.

My lunchtime meal on Saturday consisted of a small slice of meat about 2 inches by three, one small scoop of mash, and four tiny pieces of parsnip. Less than twelve mouthfuls.
I blagged an evening meal on Lilford and ate everything that was edible. I was determined not to go hungry and lose weight. We order our meals each day. Monday's order is Tuesday's meal, etc. I asked for large portions every day. I can't tell if I got them, but having seen a small portion I expect I did.

One reads reports of patients suffering malnutrition in hospital. I lost weight the last time I was in, and I didn't want to lose too much this time. Even so, I was a couple of kilos lighter than I was last week when I was weighed on Wednesday night.

When I wasn't reading or eating or being measured, I tried to sleep. Single rooms are much better than four bed wards in that respect. However, I couldn't get comfortable on the bed. The pillows were too thin and the bed too short and too narrow. The drugs gave me a bitter aftertaste and I could taste it all night. It wasn't until I was ready to leave that I found that they'd have made me a cup of tea if I asked for one..

Other than that, I was bored and homesick.

Update Friday -Thursday part one

Where was I? Ah yes. I took my temperature at about teatime on Friday and it was above 38 again. Having been told off by the staff at the Centenary Wing for not telling them about my temperature on Tuesday (but we did) I decided to ring the hospital.
They told me to go to A & E and be seen there. So at about 8.00 on Friday night we arrived at A & E. I was assessed quite quickly and my BP and temperature taken. I was examined by a doctor and blood taken for testing. Soon after that I had a chest x-ray, was fitted with a canula and was admitted to an assessment ward by about midnight.
I was given some antibiotics by injection. The room had four beds and it was hard to get off to sleep.
The next morning I was seen by the doctors again and they told me that a bed was available on the haemotology ward. I was transferred to my new bed during the afternoon visiting time.

The man in the bed next to mine was about six months older than me. He had dementia and just stared into the distance. The staff had to almost shout to get his attention. He was connected to a glucose drip and was incontinent. His wife stayed with him, and helped feed him. A young man in his twenties called in for a while. It could have been our family.
It brought home to me how short and precious our lives are. One minute I was out and about and making plans, the next I was in a hospital ward being pumped full of antibiotics.

It made me stop and think.

Saturday, 6 March 2010

Saturday 6th March 2010


Just a short note to say that Dave was admitted to hospital last night and may be there until Tuesday.

I will keep you updated.


Friday, 5 March 2010

Friday update

After publishing the last blog entry I went downstairs and sat watching TV. I was fast asleep when Sue woke me to say she was going to work. I woke up again when Chris left to go on a job. I managed to call into the clinic for an update and left a message.
I then watched tv/dozed until the phone rang. Sue said that my prescription would be ready from 12.30.
The phone rang again at about 11.00. It was the clinic. I relayed the story of the week and she asked for the full name of the antibiotics that my GP had prescribed.
When I go up to the hospital later I must have a blood test.
She told me off for not ringing in when my temperature went to 39.1 on Tuesday. I felt too ill to think straight- that's my story and I'm sticking to it.
As I said, I shudder to think what effect the chemo would have had.
I have another blood test and appointment to see the specialist on Monday 15th, with chemo booked for the 16th.
I have ten days to get over this cold

Friday 5th March 5.00 am.

I'm awake, just over three hours after going to sleep. And I ache.
My left kneecap hurts to touch and hurts when I flex the joint. There's no signs of bruising or any marks at all.
My right midriff hurts when I breathe in. One of the lower ribs hurts to touch.
My upper right arm hurts. This seems to be in the muscle rather the joint. I get a stabbing pain when I flex the joint.
My right wrist joint hurts. Possibly arthritic.
My left eye feels uncomfortable, like something is pressing on the eyeball.
My mouth tastes horrible. I keep coughing up phlegm.
I cough and cough almost uncontrollably.
If I lie on my left side it feels uncomfortable. The doctor said that this was due to an enlarged spleen. If I lie on my right side, my lower ribcage hurts.
If I lie on my back I cough.
My doctor assures me that my chest is clear, but if I sit or lie still some bronchial passages start making wheezing or bubbling or groaning sounds. I'm unable to control it in any way.
I chose not to have chemo this week because of the speed that my throat infection and temperature took hold. My immune systen is pretty shot anyway and I didn't want to make it any worse by killing it with chemo.
I wonder if these aches and pains are connected to CLL. I don't know.
My prescriptions for Aciclovir and Co-Trimaxole have run out, so I have to go into the clinic later today to pick up fresh supplies.
I'm hoping that they will postpone my treatment until Tuesday week. I'm due to be playing a set at the Alfest gig next Saturday. It's touch and go if I can make it, but if I have chemo there's no chance.
I've seen the rheumatologist and he's not going to start any treatment until I've finished chemotherapy.
The pain in my side has been niggling away for some time. I am due to have a CT scan after the last round of chemo, but that could be eight weeks away.
I went to the eye clinic and she gave me some drops and some steroids. I've since been discharged.
They took my blood pressure and commented that it was a bit high. I took a course of drugs and it reduced the BP to normal. I had my BP taken at the clinic last Monday. It's up again.

None of these aches and pains are much to write home about (or blog) by themselves but together they make life miserable.and uncomfortable.
Or am I being hypersensitive?

Tuesday, 2 March 2010

Hacked off

I went to the hospital yesterday and was there all morning. First of all I had to queue for a blood test. I was still waiting at the time I was supposed to be seen by the haematology specialist.I eventually had my blood taken and then walked around to the clinic. We queued for about half an hour before I was seen.
My blood results are good and the doctor was happy to start the treatment today (Tuesday 2nd March). I had a slight niggly cough and I told him I thought it was the onset of trachyitis. I get it every winter and it knocks me out for a couple of weeks.
He listened to my chest and pronounced it clear. We then had to go to the Rheumatology clinic. This was just an introductory meeting as the specialist didn't want to start treatment while I was having chemotherapy. He sent me to have some x-rays of my chest and my hands.
By the time we'd finished it was past midday and I was feeling worse. As the day progressed my cough worsened and I felt really unwell.
This morning I had a raging sore throat and I'm trying my hardest not to cough because it hurts.
I didn't go to the clinic but kept in touch with them by phone. Dr Lyttleton wants to start the course next Tuesday but that will cut across my appearance at the Alfest charity concert. I've asked if it can be put back to the 16th, but that hasn't been agreed yet.
I rang my GP and spoke to him by phone, explaining the symptons and the complications. He has made an appointment for me this afternoon. To be honest, I'd rather go back to bed.