Sunday, 5 December 2010


When I started having treatment for CLL about 15 months ago I was given a prescription for Allopurinal in order to prevent an attack of gout. Apparently it's common for the chemo to affect the kidneys and prevent them dealing with uric acid, which then settles in your joints, normally the big toe or knee, causing swelling and pain.
After three months or so the drug was discontinued, as the risk of getting gout was reckoned to be negligible by then.

So how come I had an attack this week? I can only assume that it was gout, as the symptoms line up exactly. So what caused it?

Let's go back to Thursday.I had a shower and during the evening I could feel an itching between my toes exactly like an outbreak of athlete's foot. I pulled off my sock and checked. Yes, the skin was cracked so I applied some cream. The next morning my foot hurt. It felt like someone was pulling my big toe off my foot, in the same way that one would tear a wing or leg from a cooked chicken. The joint was swollen and it hurt to put my foot on the ground. I hobbled around during the day and in the evening took to my bed to read my book.

I had a brainwave. Could I be suffering from gout? I'd all but forgotten about the course of drugs I'd had the previous year, but I thought I'd Google "CLL and gout" and see what I could discover.

I discovered that gout is indeed a possibility to anyone who has had chemotherapy. But what brought it on?

I continued looking.

Some foods can cause an attack of gout, including liver. I love liver and onions and we eat it most weeks without a reaction. Then I remembered. I'd bought a larger than usual pack of liver from the local shop and it was far more than we usually eat, so I served three portions instead of two and I ate the second portion on Wednesday night (after eating it on Tuesday as well).
So it seems I could eat one serving of liver without any ill effect but not two.
As I write this I still have to speak to the specialist (rather than my local medical centre- I never see the same GP twice and it's such a pain to have to go through my story every time I make an appointment. The poor GP's eyes glaze over before he/she even examines me, and often they just don't have the specialist knowledge anyway.)

Once I've spoken to a doctor I'll know the way forward. There are two ways to deal with it. The first is a course of anti-inflammatory drugs to reduce the swelling, followed by a course of allopurinol.

The second is much harder. It involves a complete change of diet, and that would be very tough for me. Cutting out alcohol is easy. I've been teetotal for years. Alcohol is not the cause of my gout. I'm pretty certain that it was eating liver twice in one week that caused the outbreak.

There are a number of lists of foods that are said to cause/aggravate gout. The trouble is (twofold in my case) that the lists are different.
For instance, liver appears on one list but not on another.
Cutting out kidney and other offal won't be a problem, but I like liver, so boo.
Cutting out sardines, mackerel, trout cod and salmon will be ok. But haddock?
I love haddock, much tastier than cod.
Red meat is a no-no, along with gravy.
Shellfish is out, along with anchovies.
Even turkey gets the thumbs down.

Why is it that all the food that has taste is barred?

How come cauliflower is barred, along with spinach, but cabbage, kale and other leafy vegetables are ok?

Oatmeal is out- so no more porridge or muesli.
Whole grains are out. So much for healthy alternatives.
White flour is out as well.

The only good news is that chocolate is good for you. So are strawberries, raspberries and cherries

I eat what I consider to be a good diet. Mostly plain food, nothing spicy. certainly nothing that my grandmother wouldn't recognise. I'm not a foodie.

Even so, having a good percentage of my limited diet ruled out is a bit of a piss-off, to be frank, so I'm going to go down the drug route to clear the gout up, and then remember not to eat too much liver at one (or two) sittings.

Saturday, 20 November 2010

Saturday Nov 20th

It's three weeks since my last post. Three weeks of working three days a week. So what's new?
First of all I finished taking Aciclovir this week. My specialist said to finish off the supply and then continue taking Co-Trimoxazole three times a week only.
I can just about remember that. On work days I take my pills. Simples.

How do I feel? Well, I'm coping at work, except for my back and neck problems.
I've had arthritis in my neck for a few years and this is the time of year when it plays up. Add in a severe lower back pain and I'm immobile if I have to stand for more than a few minutes. Luckily my job is desk-bound.
On Fridays I have to take the post to the DX and main Post Offices. This involves a walk around the town centre and by the time I get back to the office I'm all in.
I've also gone shopping afterwards and by the time I get home I'm exhausted.
Yesterday I was able to go home without doing the shopping but even so I slept for twelve hours.
So I have a severe lack of stamina coupled with pain in my neck, pain in my lower back, both of which add to my not inconsiderable grumpiness. I hate this time of year, with its cold, its damp, and short days. Roll on next May!

I have started singing again. I sang three songs at a local Open Mike night two weeks ago (repeated again this week),and was approached with a view to rehearsing with a country/rockabilly band. So I've rehearsed with them twice. I'm not sure it'll come to anything. I have my own plans.

Last Saturday I was invited to open for Paul Wheater at a local church. I played for about 35 minutes and went down well. I have another appearance lined up in a church in Rushden next Saturday. These spots will keep me ticking over during the winter, weather and colds permitting.

Next week I will see my GP, touch base and arrange a repeat prescription for my drugs, and discuss what to do about the various aches and pains.

All in all, it's a much better place that I was in last year.

Tuesday, 2 November 2010

Nov 1st 2010- into remission

My date for my appointment finally arrived after several days of hypochondria-like symptoms. I imagined every ache and pain as symptoms of something worse. I had difficulty getting off to sleep, especially lying on my left side (where my spleen is situated). A few months ago the effects of the CLL had caused it to swell up, making it hard to lie on, and now...was I experiencing this again?

Anyway, I went to the hospital and had my blood test. When I turned up at the clinic we discovered that our parking permits were out of date,and we were no longer able to park in our usual place. Sue moved the car to the main car park (where we have to pay the full fee)and it was not a moment too soon as a car park warden came into the clinic asking people to move their cars. Half an hour later he issued parking tickets.

That bit of excitement over, we were called in to see the specialist. I was weighed and asked if I'd had any problems. He was unconcerned about my inability to lie on my side because he had good news. The last bone marrow tests failed to find even the tiniest trace of CLL in my bone marrow, meaning that the treatment had been successful and that I was now in remission.

My immune system is still compromised, and will be for some months yet, and I will have to continue with one of the drugs- and I must have a flu jab, but other than that, it's all good.

I will have to go back to see him in three months time, and every three or four months from then on.

I took my prescription to the pharmacy and was told to return in 30 minutes. We then called into the hospital hairdressers in the main entrance area. Our son's girlfiend's mother works there,and she trimmed about four inches off my hair and generally tidied it up. I'd refused having anything done to my hair until I was in remission and it was getting too long.

We then went to the car and drove towards home.

It was then we remembered my prescription. First of all we called into the new Asda in Kettering to buy a pair of work trousers ready for tomorrow, then drove back to the hospital. Sue dropped me off then drove to a Warehouse style retail store opposite the hospital. I collected the prescription and walked over to the store where I bought a 2011 diary, and Sue bought a few things.

The shopping came to £8.88 and as we left the store I said "The parking was a bit expensive, but at least you get a free bag of shopping!"

Then it was off home for lunch together. Sue went back to work and I wrote some emails and posted the news on Facebook, and then made a couple of phone calls.

Back to work tomorrow.

Thursday, 28 October 2010

October 28th 2010

I'm almost at the end of this particular chapter in my life. On Tuesday I see the specialist for hopefully the final (for now) time. he will have had a chance to look at the results of the bone marrow test and the CT scan, together with the blood test that I'll have before I see him.

Based on these results and any trends that can be deduced, he will give me an idea of the kind of remission I can look forward to.

Whatever the outcome, I have to go back to work. I've been relying on the monthly payments from an insurance policy to pay the mortgage, and they only pay out up to a maximum of twelve months and I received the last payment this month. I checked and I can work for a maximum of 15 hours and 59 minutes a week before I lose my Employment and Support Allowance, and I can earn up to about £95 per week. However, that benefit runs out in a few weeks and I'll have a monster booklet of a form to fill in, then have to undergo an examination by a "doctor" whose job it is to weed out bogus applicants. So it's just so much hassle.

I'm lucky in that I can go back to my old job, initially at 3 days a week. Obviously my wage will be cut by 40%, but that's still better than I can get from the government. I'd rather be working than sitting around vegetating, although I'm not sure if I'm physically up to it yet. There's only one way to find out.

So I'm going in to work next Wednesday, all being well.

Saturday, 9 October 2010

Tests completed

I had my bone marrow test done last Wednesday. Although I had to book in at 8.30 I wasn't operated on until well after 10.00. I'd not had anything to eat since the night before, and nothing to drink except a sip of water with my drugs, and boy, was my stomach rumbling!
Eventually I was called down to the day theatre where I lay on a bed and presented my backside to the world. I had a local anaesthetic and chatted to the nurses while the doctor poked and prodded my back, looking for a suitably bony place to dig. Once she was satisfied that she had the best spot, she took the sample. I have no idea how it's done, or how much marrow is taken, as I was concentrating on charming the nurses with my witty repartee. It felt much like when you get a dead leg, or bruised buttock. Not particularly painful, but not pleasant either. A bit like root canal work at the dentist really.

Once it was complete, I was wheeled back into the ward, where they took my blood pressure and temperature and brought me a cup of tea and a biscuit. After a few minutes I felt well enough to have a refill of tea, and after another set blood pressure/temp measurements, was given the all clear to be collected.
I had a large padded plaster on my back, and was told to keep it dry for a couple of days. As the day wore on, any pain I felt eased, and I forgot all about the plaster until I was having a shower a couple of days later. It came off quite easily and there's hardly a mark on my skin to show what had happened.

The next day (Thursday) I had a CT Scan. I've had a couple of these and they're quite straight forward. The most uncomfortable part is having the canella fitted for the injection. They scanned my abdomen from my upper chest to my groin area, and I was passed through the scanner on a moving bed/table. I had my arms above my head and had to hold my breath as the scan was made. They inject you with some dye that helps them identify the blood vessels or organs and the injection causes some strange effects. Firstly, you get a strange metallic taste in your mouth as the injection goes into your veins, followed soon after by a warm feeling in your groin area that feels as if you've wet yourself. Very strange.
The scan took but a few seconds and then I had to wait for 15-20 minutes before they removed the canella from my arm.

My appointment with the specialist isn't for a month. This will allow all the bone marrow results to come trough. Certain tests take a few weeks to come through, hence the delay. I'll have a blood test on the morning of my appointment, and then the specialist will be able to ascertain where I am in my recovery, and how much remission I can expect. The last time I saw him he was confident that judging by my results so far, I can look forward to a good remission (whatever that means).

The other news is a bit more worrying. I have been able to claim on my insurance for critical illness, and the monthly payments have been invaluable in keeping our mortgage payments and other bills up to date. However, they only pay out for a maximum of twelve months and this next payment will be the final one.

So I have to consider returning to work in the near future.

Tuesday, 28 September 2010

Tuesday 28th September

I have my tests on the 10th & 11th of October. I'm feeling well, that is, I'm managing to avoid catching the colds that Sue and Chris are carrying.

I wish I could say that I'm feeling fit. I'm dismayed at my lack of stamina. I'm sure I felt fitter than this when I was touring back in the summer. Even a short spell of activity in the garden tires me out. Today Chris and I drove around the town, visiting the Post Office to post a parcel to a friends, and then trawling around the DIY sheds looking for a certain type of washer for his bass drum fittings. That was a fruitless search, and after a couple of hours I was exhausted.

My neck aches, my joints ache, the bottom of my heels hurt, the skin infection on my finger has flared up, the skin all cracking and painful. It can only mean one thing- the approach of winter and the return of my arthritis.

Luckily enough, I have an appointment with the specialist in about a month's time. When I was hospitalised earlier this year I had severe pain in my hands and scleritis in my eyes. My haematologist arranged for me to see the arthritis specialist and he said that he couldn't start anything until I'd finished my chemo. My appointment was originally for July but I hadn't completed my treatment, so it was postponed until October.

If I recall, I had no arthritis symptoms back then, so this may be a blessing in disguise.

More next week

Saturday, 18 September 2010

September update

It's been a couple of weeks since my last post ( I was reminded of this by a friend earlier today), so I ought to give an update.

My mouth ulcers cleared up within a few days of applying the mouthwash. Although I only had a couple of ulcers, it was enough to put me off my food, so reading about another cancer sufferer who had a couple of dozen mouth ulcers following her chemotherapy filled me with the utmost sympathy for her.

The holiday was great. We were able to go out every day and revisit favourite locations. I took loads of photos and you can see them on my Facebook page. One day we did a lot of walking around St Ives and I paid for that the next day, but I enjoyed the late summer sun and spoke to our son each day, as he project managed the installation of our new kitchen (which looks very nice).
We got back last weekend. Since then we're slowly getting the house dusted and shipshape again. I even managed to cut the grass before the heavens opened.
I'm trying to do as much as I can, but I realise that I feel better than I actually am- if you get what I mean.

I have very low levels of energy and stamina. Tasks like cutting the grass take it out of me. Any lifting hurts my lower back. I'm not as fit as I imagine myself to be.
Is it the illness or my age? I don't know.

I got a letter from the CT Scan department at the hospital. Guess what? My appointment is for the same day that I'm due to have a bone marrow test. I rang them and changed it to the next day. My bone marrow test is on October 10th and the CT scan on the 11th.

My next appointment to see the specialist is booked for early November. By then they will know my prognosis.
I will have to think about returning to work. At the moment it'll be part time, perhaps for two full days a week. Even that sounds a lot.

Tuesday, 24 August 2010

More on my ulcers and sore mouth

I found this link that shows that one of the drugs I take as part of the chemotherapy is the cause of my ulcers. Cyclophosphamide.
Read about it here
The condition is called oral mucositis. Cyclophosphamide targets fast growing cells in the body. Cancer cells are fast growing, but so is the lining of the mouth and gastroentiral tract- your guts. So the drug attacks the lining of your mouth.
I won't go into the details. You can read them yourself. Suffice it to say that I didn't feel much like eating over the last week.

So what can be done? My doctor has prescribed a different mouthwash. I must brush my teeth after every meal and every few hours as well. I must use a mouthwash regularly. Will it make a difference?
Sadly, the evidence suggests that it doesn't
From the article:
"90 patients took part in this study. Roughly half rinsed 3 times a day with a chlorhexidine product, an antiseptic. The other half did not. The antiseptic rinse did its job, there were fewer bacteria in the mouth after rinsing. But to the disappointment of the researchers, not only did this not reduce the number of patients who got severe mucositis, there was an increased risk of mucositis in the experimental group! They concluded, this antiseptic mouthwash seemed to enhance the risk of mucositis, and its nasty side effects. Think about that as you swish away with the latest Listerine type of mouthwash.

Every oncologist and cancer hospital seems to have its own version of a "magic mouthwash". The second abstract below compared three mouthwashes, plain old salt + baking soda, the infamous chlorhexidine discussed above, and a "magic" mouthwash consisting of lidocaine, Benadryl and Maalox. Guess what, in this large group of 200 patients, there was no difference between the three mouthwashes. The researchers concluded the old wives' remedy of gargling with salt and soda water was just as good, and a whole lot cheaper."

So it seems that we're between a rock and hard place. There is a drug that offers some relief. It's called palifermin and I don't know if it's available or suitable. Other than that, the best advice on offer is to suck ice.

Tuesday August 24th

It's a week since my last post and my mouth hasn't improved so I rang the hospital yesterday and was called in for a blood test today.
I was squeezed on to the end of a very busy clinic and luckily didn't haveto wait too long before I was called.
I explained that I was going on holiday at the weekend and needed assurance that I wasn't carrying an infection that could cause problems. The doctor looked at my blood test results which were generally good, although the neutrafils were a bit low. This apparently explains why I'm getting a sore mouth. I've had a look on t'internet and there's quite a lot on the forums, so I'm going to have to read up.

He prescribed me some green mouthwash which has an analgesic effect. I have to use it four times a day for the next four weeks. I will also have to brush my teeth more often and avoid cutting my gums if I floss.
All in all it's a whole new oral hygeine regime change.

On holiday in a few days. Can't wait!
Chris is supervising the new kitchen installation while we're gone.

Tuesday, 17 August 2010

Tuesday 17th August

It's two weeks since I started my last bout of chemo and surprise surprise, my mouth is breaking out in ulcers again. I checked back on this blog and found that I had a sore throat/ear infection and mouth ulcers a few weeks after the last round.
I've also got a couple of saliva glands swollen up inside my mouth, under my tongue.
I'll have to keep an eye on them.

Other than that, my temperatures are good, but I'm still more tired than I expect to be. I just nod off without warning.
Part of the symptoms or just getting old?

We go away for a few days in just over a week's time. I'm looking forward to a change of scenery.

I'm looking forward to sitting on this clifftop looking out over the sea.

I wrote the lyrics to the song just before I started the first session of chemotherapy last autumn. It's on my list of songs to record once I get back to fitness.

Tuesday, 3 August 2010

Tuesday 3rd August

It's almost a year since I was bitten by a sheep tick, which started this whole new phase of my life. I was diagnosed with CLL last September and I was due to have six courses of chemotherapy over the following six months.
In the event (you can read all about it on this blog) I've only yesterday begun the sixth and final course.

I had a blood test which confirmed the current status of my blood cells, which have improved over the last month or so. I had my Rituximab via a drip yesterday and I've taken the first dose of the other two drugs today. I expect to be a bit low for the next week or so (although last time in May I sailed through, so who knows?)

We go on holiday a couple of weeks after that. I've been booked for another bone marrow test and CT scan in October, with another consultation in November.
The doctor seems quite optomistic about the length of remission I can expect.

In the next few months I will have to decide whether to go back to work full time or part time. This will depend on whether I can get any benefits. We will also have to look at other financial matters.

But in the meantime I can look back on a fun tour with Nicki. It was hard work at times but I wouldn't have missed it for the world. I should point out that I never received any payment at all for my services, as I considered it to be part of my rehabilitation.

The next week or two may be uncomfortable, but then I have a holiday to look forward to.

Tuesday, 27 July 2010

Tuesday 27th July

Last week was a marathon, but in the event I sailed through, even completing three shows in under 24 hours and hundreds of miles apart. I've spent the last couple of days resting up before the final leg of the tour which ends on Saturday.
After that I have an appointment to see the specialist on Monday morning, prior to undergoing my 6th and hopefully final bout of chemo.
I'll update this blog over the weekend.
In the meantime, enjoy the summer!

Monday, 19 July 2010

Monday 19th July

Our latest leg of the tour was very successful. Three shows in the North East before returning home early on Saturday morning.Time for a sleep, drop off the washing, shower and then we were off again, this time to Shrewsbury for a Sunday show. We had accomodation near the venue which meant we didn't have to get up really early. You can read all about it on my other blogsite
We arrived home sometime after 9.00 so I had a good night's sleep, ready for my visit to hospital today.

The blood test was a formality and we didn't have long to wait to see the doctor. My blood results have improved slightly, so he was happy to postpone my 6th bout of chemo for two weeks, that is, until after the tour has finished.
The longest wait was for fresh supplies of Aciclovir and Co-Trimoxazole from the pharmacy. We sat and had a latte before returning to collect the prescription. However, we still had to wait because there was a query with the dose. In the end they dispensed on the basis of two pills per dose instead of one, which I queried, so now I have enough co-trimoxazole to last for three months.

I'm feeling fine. I'm a bit stiff when I wake up or get out of the van, but I'm enjoying life at the moment. This is a busy week. Three days in the Northeast, a trip up into Scotland, then down to Wolverhampton and ending up in Norwich before another rest day.

I will be taking it easy at every opportunity.
And enjoying every show, treating each one as if it were my last.

Monday, 12 July 2010

Monday 12th July

It's a rest day today. Last weekend was quite hectic but great fun. On Friday we had an early start to drive to Northampton to collect Cozy and then onwards to Portsmouth for the 1.30 ferry to the Isle of Wight. As usual the weather was very warm and the contrast between a hot venue and the cool air when loading the van had to be carefully managed. Luckily my tour jacket did the job admirably.
We had to be up early again on Saturday to catch the ferry back to the mainland and then we had the long drive up to Newark. Chris did all the driving so I was able to sit and read the paper and watch the world go by.

The Americana festival was great fun. We had a big stage and an enthusiastic audience that lifted our performance. However, it was like standing next to an open oven on stage. Once again the tour jacket came in handy when we came off stage and the evening breeze picked up.
I must have walked miles that day. The Showground is a very big place and we wandered around looking at the cars and checking out the stalls. I made full use of the hospitality area. I must have drunk four or more cups of tea, one after the other.
Eventually we had to leave to drive home, arriving at about midnight, tired out but happy.

On Sunday I woke up early and spent some time catching up with the video recordings of the Tour de France, then relaxed in front of the TV to watch the British Grand Prix. As soon as that ended Sue and I drove to Corby to watch Chris' band playing at the Corby Gathering. They were set up on the back of a lorry outside a Working Men's Club by the roundabout leading to Asda. Some wag called it the Downroad Festival. The band played really well considering the heat and confines of the stage.
After that it was back home, more tea, read the paper and then I set about sorting through the many photos of the weekend.
Some can be found on my Facebook page, although you have to be signed up to see them!/dave.clemo

I was dozing in front of the TV when Sue persuaded me to go to bed. Today I woke up tired, with aching limbs, but that's not surprising. I have two days to rest up before we head off to the North East for a few days.
My temperature is still normal and I continue to take the pills. I'm enjoying life at the moment. I'm busy doing what I love, and not many people can say that these days.

Tuesday, 6 July 2010

Tuesday 6th July

It's a week since my last post and I'm still feeling OK. I've played three shows since I saw the specialist and am suffering no ill effects.
I'm wrapping up like a racehorse after each show finishes. The warm weather and hot lights mean that I'm sweating profusely when I go out into the cool night air. Luckily I was presented with a tour jacket that does the job admirably. I'm able to cool down slowly as I sit in the cab listening to the others loading the gear into the van.
We're having a few days off before we start again this weekend with shows on the Isle of Wight and at the Americana Festival at Newark on Saturday.
Next week we head north for a couple of shows before attending a festival in Welshpool. The week after that I have an appointment to see the specialist on the Monday and then I'm due to head north for a few days, then on to Scotland, Wolverhampton and Norwich on consecutive days.
After that there's a couple of days off before the final flurry of shows.

I've said it before but I'm really enjoying this tour. It gives me a chance to do something positive, to entertain others and also to express myself and be creative. I'm enjoying the company of friends and the warm weather. I'm enjoying the travelling and the countryside.
This is much better than staying at home.

What's next?

Tuesday, 29 June 2010


I did some internet research tonight and found a paper that describes my apparent lack of symptoms combined with a low platelet count. I'll be speaking to the clinic tomorrow morning about it.

They say that too much information is a bad thing when you have no training or background to interpret it correctly, but speaking as someone who is intimately interested in the outcome, I'm going to find out as much as I can.

Tuesday 29th June

I went back to the hospital again this morning for another blood test and a consultation. It appears that my platelet count is still dropping and they don't know why. The white cells have responded to the injections I had last week and are back to normal.

I'm not sure what to make of it all. I'm feeling well enough to continue touring, subject to keeping rested and my throat infectection has cleared up. So I'll continue with the tour, starting tomorrow in Washington, Tyne & Wear. This weekend's shows are all local.

Next week would have been a good time to have my final dose of chemo, although there was some discussion as to whether I'd need it. However the low platelet count has put paid to any chemotherapy for a couple of weeks.

I now have to return to the clinic on Mon 19th July, with the possibility of starting treatment that afternoon. If that happens then I have to continue the course of chemo while I am away on tour in the North East, and I'm not looking forward to that at all.

Very strange.

Saturday, 26 June 2010

Saturday 26th June

The hot weather continues. I don't like prolongued spells above about 27c, but as the saying goes, mustn't grumble. It is after all, much better that the prolongued cold spell last winter, when temperatures struggled to get about zero.
I had another blood test yesterday and I saw the doctor. She said that my white blood cell count was improving but that the platelet  count was still very low. I'm not sure what set that off. I've been carrying a throat/ear infection and mouth ulcers for the last week. Maybe there's something else underlying that.
The news is that I'm to finish the course of injections and then go back again on Tuesday for another blood test and consultation.
There is one change in the strategy. Last month they were talking about two further courses of chemotherapy, now they're hinting that I may not have/need the sixth. The doctor spoke about another bone marrow test and a CT scan in the next few weeks.

Nicki's tour continues apace. We're playing on Sunday and again on Wednesday. The gaps between the dates have worked in my favour. I have at least a day/night in between each show to recover. I'm feeling stronger as well. It still feels very strange not to be allowed to load the van and carry the gear in or out of the venues. I just read a book or the paper, and then set the kettle up and make everyone a cup of tea. It was so hot last night that I drank two mugs straight off before my thirst was quenched.
Ah, the rock and roll lifestyle!

Thursday, 24 June 2010

Thursday 24th June

I have to go back to the hospital in the morning for another blood test and to see my doctor. I've been injecting myself each day in order to stimulate production of white cells and tomorrow I'll find out how successful it's been.
Other than that, I've done my best to do as little as possible and rest up whenever I can. The tour is going really well. Check my other blog for details.

I've done four shows so far with two more this weekend. I'm enjoying it immensely and couldn't wish for anything else. I'm also treating each show as if it were my last. One day it may be.

I appreciate your prayers and emails of support, thank you so much.

Tuesday, 22 June 2010

Tuesday 22nd June

I went to the hospital yesterday to have a blood test and for a change the clinic was empty. Usually they're queued out of the door on a Monday morning. It must be the sunshine.
I then went to Dr Lyttleton's clinic and sat and read the paper until I was called.

It seems that I don't have any white blood cells at the moment. This is due to the ear/throat infection. I've been prescribed a course of injections to stimulate more white blood cells. I have to inject myself each day.

The upshot of all this is that I won't be having chemo until this infection is cleared up. I have to go back on Friday for another blood test and consultation. The doctor warned me that if my temperature exceeded 38c than I would have to be admitted to hospital while they treated the infection with antibiotics.

It goes without saying that I am monitoring my temperature constantly. It was very hot yesterday as we drove up to Widnes for the next stop on Nicki's tour. I stood back while they unloaded and loaded the van. That felt very strange as I'm normally very active.
We got home at about 4 this morning and I was awake at about 10.30.
My temperature is still "normal" but my back is giving me some real pain. I just can't get comfortable. My doctor said that I'd know when the injections kick in and I start to produce white blood cells because my joints will start to ache.
I don't think that this is what he meant.

We're back out on the road tomorrow (Wednesday) and again on Friday and Sunday. This gives me a day to recover.

I'm enjoying every moment of playing on stage. I wouldn't change this for the world. This is what I do. I just hope I can continue doing it for the remainder of the tour.

Saturday, 19 June 2010

Saturday 19th June

A strange week. On Monday evening I noticed a rash on my ankle that looked like an insect bite. The inside of my mouth felt like I was about to develop an ulcer.
I contacted the Centenary Wing and went to see them on Wednesday morning. The nurse looked at my ankle and consulted the doctors. They felt it was nothing to get concerned about at this time.
As the week progressed my mouth broke out in ulcers.
 I constantly checked my temperature but it was normal.

All this is unfortunate as the singer that I play bass for has arrived in the UK for a month's tour. Yesterday we played the first show, up in North Yorkshire. It went very well, considering I hadn't played for almost a year. It was very cold however. I stayed in the van as much as possible.
It was a long long day. We left Kettering at 11 in the morning and didn't arrive back until 5 the next morning.
My ulcers and a developing sore throat gave me a lot of pain and discomfort.
We have another show near Evesham today. We should get back at a reasonable hour from that. Tomorrow we're booked to see a friend in Nottingham Prison and I'm scheduled to see the specialist on Monday.

At any other time these ulcers would be a minor niggle. Experience has shown that even a minor infection can lay me low. This couldn't have come at a worst time.

Sunday, 13 June 2010

Sunday 13th June

Another week gone by. The weather broke and for a couple of days I felt unwell. Nothing specific, just unwell. However when the weather turned I was able to get back out in the garden and cut the grass and tidy up a bit. It's amazing how therapeutic it is.
Other than that I've been taking my pills and taking my temperature regularly and practising my bass guitar. Nicki arrives in the UK on Thursday and I'm determined to be at that rehearsal on Thursday evening and on the tour bus on Friday. If I can make the first two dates I'll be happy. I will then see the specialist next Monday, have my chemo and if all goes well, rejoin the tour a couple of weeks later.
I have an appointment to see an arthritis specialist next month and I'll have to postpone that as I'll still have chemotherapy drugs in my system.

Sunday, 6 June 2010

Sunday June 6th

The sun has been shining and I've spent a lot of last week in the garden. My friend Pip called around and kindly painted the garage door, which was looking a bit drab. I spent a few hours giving him a guitar lesson and he's happy to take that as payment.
I've felt pretty good all week. The chemo came and went without major pain or stress and I'm focussing on being well enough to meet up with Nicki, Bob, Tracy and Cozy in about ten days time. If I can stay healthy I should be able to go out with them for the first couple of shows before my next appointment in a fortnight's time.
Who knows, if I can stay fit and healthy and the chemo doesn't hit too hard I may be able to join them on a few more dates.
Meanwhile, I continue to take my drugs and measure my temperature a couple of times a day.

I have to take care that I don't get hypochondria. There's a lot of it about.

Sunday, 30 May 2010

Sunday 30th May

I managed to finish my course of chemo without throwing up once. That's not to say I don't feel ill, or tired, or that my lower back's not giving me grief.

I started on Tuesday moring at about 5 in the morning. The previous day's dose of Rituximab left me very tired so I went to bed when I got home from hospital. However, this meant I was awake in the small hours feeling restless. So I got up and made myself a drink and then took my first dose  of Cyclophosphamide pills, six tiny white pills. I also took an anti-nausea pill as a precaution. I have to wait an hour before I can eat anything but the time soon went by. I went back to bed and started to read but tiredness overcame me and so I slept until late in the morning. This time I got up and dressed.
My instructions are to drink plenty of fluid but this may actually increase my nausea. It certainly makes me feel hungry as my stomach contracts, so my day was interspersed with numerous snacks. I have, however, stopped eating chocolate, because I couldn't just eat a chunk ot two. I was eating the whole bar at a sitting. No problem if they're tiny snack sized bars, but people were buying me the 400g bars and I was devouring them in a day or two.
Is chocolate addictive?
My son has his own fridge next to ours and I notice that the salad tray is packed full of chocolate Easter eggs. Am I tempted to help myself?
Only when the door is open.
I have to take some more pills each lunchtime. These are called Fludarabine and I take five tiny pills each day. So down they go with some more water, followed by cups of tea.
I enjoy watching professional cycling on the TV and this week has been the final stages of the Giro D'Italia, so I set the timer for that and tried to watch it in between finishing the codeword in the paper, and dozing in the chair.
Even so, I'm ready for bed by nine or so, and I fall off to sleep...

Only to wake at about four or five the next morning. I've seen the sun come up every morning this week, and heard the dawn chorus as well.

This was my schedule all this last week.
As the week progressed I increased the dose of anti-nausea pills to the maximum and I managed to survive without being sick, and I consider that a minor triumph.

On Wednesday evening Sue and I went out for an hour down to the Cherry Tree pub in town. Chris was playing his final dress rehearsal prior to his band's appearance at the Glastonbudget festival in deepest Leicestershire and I wanted to see how they're progressing.
It's been a tough old slog for them to get the band ready, with two personnel changes in the last year and a constant refining and honing to get the sound and image right.
They sounded great, but a bit loud when I went down the front to take a picture. My ears are no longer used to the volume. I can't stand up for very long either, so we stayed less than an hour before Sue, ever mindful of the fragile state of my immune system, took me home.

So that's been my week. Chris said that his band played well and attracted a good audience, although he couldn't hear any guitar, just his drums and Iziggy's vocals. Ah, the good old days.
When I played in Left Hand Drive all I could ever hear was my guitar and a bit of drums. I could never hear the vocals and I was singing!
That might account for the tinnitis then.

So here I am on Sunday morning, looking forward to breakfast, the Formula One, the final stage of the Giro later this afternoon, and three weeks of recovery before I do it all again, hopefully for the final time.

Monday, 24 May 2010

Monday 24th May

I came back from holiday feeling fitter than I have in a long time. I went to the hospital feeling very confident that I'd get the all clear.

I was 99% successful. The problem was the remaining 1% leukaemia cells lurking deep within my bone marrow. My doctor explained how about how new the treatment that I'd been having was, and that they didn't have enough information about survival rates where the treament (the chemo) was cut short.
Basically my survival rate is higher (or longer) if I have the full six courses. I tried to have the last two sessions postponed until August but to no avail. So I started the fifth course this afternoon.
I started having the rituximab drip in the Centenary Wing day clinic and was transferred to Lilford Ward after about 4.00. I finished the course at about 8.30 this evening and I start taking the other drugs tomorrow.
This has killed off any hopes I may have entertained about taking part in Nicki's tour in a month's time and I will be having the sixth and final session then, all being well.
On the plus side the weather is warmer and I'm feeling fitter that I did last autumn when I began the treatment, so I'm hoping I can stay healthy and out of trouble and get the all-clear in August.

Saturday, 22 May 2010

Home sweet home

Just back from a week in Whitby. The sun shone every day and I feel much better for it. I've walked further in the last week than I have in the last six months in total. I'm struggling with my back and have to rest/sit down frequently but there's a world of difference between feeling ill and feeling tired.
I have an appointment to see the specialist on Monday and should get the all-clear with the CLL.
I also got sunburnt sitting in the passenger seat as Sue drove home. I daren't take my shirt off as I'd look like a Swan Vestas match.

Wednesday, 19 May 2010

Wednesday 19th May

I'm writing this in Middlesbrough Central Library. We got up early to catch the 8.52 from Whitby to Middlesbrough and enjoyed a train ride along the Esk Valley and on to Middlesbrough. We have about four hours before we catch the train back. At £8.70 for both of us it's a bargain.
We arrived at our holiday home on Friday and soon got settled in. We've stayed in this house before so it was just as we remembered it, except that the sofas were new and quite comfortable (most holiday homes aren't).
We called in to the Convention to say hello, make contact with Colin on the sound desk and put our CDs on display. It was good to meet Paul Wheater again. He was rushed off his feet as usual. We're hoping to spend more time with him later in the week.
Saturday was spent lazing around. I didn't want to tire myself out before the evening concert. We arrived at the venue in good time and I was first on. George Hamilton IV introduced me in his usual inimitable style and I sang five songs. I had to sit down as my back was hurting, but the songs went really well. I told the audience that they'd been listening to tracks from my forthcoming album. I'm hoping to make a start this summer.
Sunday was another lazy day. We watched the Monaco Grand Prix and then went down to the Convention to meet some friends, leaving before the concert got under way.
Sue managed to put her back out while getting out of the shower so we both hobbled around the town, stopping frequently to look at the view, lean on the harbour railings or sit down. Someone once described getting old as always looking for somewhere to sit, and I know what they mean.
Tuesday was spent at Saltburn by the Sea. I really like the place. It was sunny and warm away from the beach and people are friendly and happy to chat all day. On the way back we called into Grosmont and had our first sniff of steam as we walked up to the engine sheds and watched the trains go by.
I'm doing a fair bit of walking and I'm tired by the end of the day, but I'm sleeping well even though the bed is a bit small. Feeling tired is not the same as feeling ill, so I'm hopeful that I'm on the road to recovery.
I'm not sure what else I'm doing this week. It will involve a fair bit of sitting and looking at the sea.

Thursday, 13 May 2010

Thursday 13th May

It's cold. That said, I'm feeling OK and looking forward to a week away by the seaside- the North Sea.
I'd better pack a winter coat.
I've been practising my guitar and singing the songs I'm planning to perform on Saturday night. I've chosen a few that I've never sung before. We've played the Whitby Gospel Music Convention so many times and we've probably sung fifty different songs in different styles, mostly with backing tracks but a few unplugged, so It's time for a change again. Just me and my guitar, a kind of homage to late period Johnny Cash. I've been singing his version of "Hurt" for a couple of years and it's on my list, but I doubt I'll have time to sing it because I have other songs to sing.
We usually get three spots during the weekend but I've asked to limit this to one spot of about twenty minutes. I'm confident my voice and my back will hold out that long. Hence the distillation of my set into about six songs. Songs that people will remember.

I've also been sorting out some CDs to sell. I found a box of "Songs of Praise & Devotion" that lacked inserts or traycards, so I've been printing and guillotining all morning. I had a lovely laser printer for Christmas so the print quality is good.
This is very much a transition time for me. I'm thinking about which musical direction to take and I'm clearing out some clutter. I have to sort out my website as it hasn't had any attention for about three years- a lifetime in interweb terms.
I designed the banner yesterday. This is it
I'll get to grips with the site when I get back from holiday

Monday, 10 May 2010

Monday May 10th

I went to the hospital expecting to hear the results of my bone marrow scan but they hadn't been received, so I have to wait two more weeks.
My blood results are consistently "normal" which is encouraging, and I can tell the chemo is wearing off because all my pre-existing aches and pains are resurfacing!
All being well we're away to Whitby for a break this weekend.
Blogging may be light.

Saturday, 8 May 2010

Sat 8th May

Brrrr. It's cold and wet again. That's the start of the British Summer for you.
I've had a good week. I've felt well. Still the aches and pains that go with enforced inactivity, alllied to  lower back pain that means I have to sit down if I walk more than a few hundred yards or stand for more than a few minutes.
I'm looking forward to next week on a number of counts.
The first is that I see the specialist on Monday. That meeting will determine how the rest of the year will go. I had the bone marrow test and I will get the results. If they're good then no more chemo for now.
At the end of the week Sue and I are away on holiday to Whitby.
I just hope it warms up.

Saturday, 1 May 2010

Saturday 1st May

I've been feeling much better as the week has progressed. I've cut the grass and taken a trip into town without any ill effects. My temperature has remained normal. Maybe it's the warmer weather.

My last bout of chemo was during the first week of February, which is over three months ago.
My muscles ache, especially my lower back, but I suspect that is more to do with lack of exercise than anything else. I'm looking forward to getting fitter.

My friend Jerry Arhelger and I toured the UK a couple of years ago, playing churches and clubs and meeting a lot of people. During our conversations he used to refer to his "chemo brain" and I know what he means. I lost the ability to concentrate on anything, and it's only gradually returning.
I always said that mental work was as tiring as physical labour, and these last six months have brought that home to me. I'm struggling to concentrate enough to play my guitar and sing for more than a few minutes at a time. I'm hoping for the all-clear in a week's time and want to play some part in Nicki Gillis' UK tour, which starts in mid June.

However, the idea of me driving a couple of hundred miles and playing bass for a couple of hours afterwards still seems very optimistic. But I'm hopeful we can work something out. My son Chris is lined up to drive the van and carry the kit.

Let's hope that Monday week brings good news.

Thursday, 29 April 2010

Bone marrow test Weds 28th April

I went to bed early on Tuesday night and managed to sleep through until almost eight. At least I wasnt thinking about my stomach. I couldnt eat or drink anything before attending the treatment centre.
We arrived at the brand new treatment centre at Kettering General Hospital. Very big, very airy and very similar to the new Prospect House medical centre close by. That is where my doctor is based. Two medical practices in one building.

Its immediately obvious that these buildings have been paid for with public money. They have been laid out without regard to staffing costs. At my doctors surgery there is a large ground floor lobby with a receptionist sitting there. Her job is to direct people to the next floor, as the surgeries are located there. You go upstairs and there are two reception desks,one for each practice, with at least two receptionists at each desk.
The new Treatment Centre also has a receptionist on the ground floor. I went to her desk to be told that I need to go upstairs. I went upstairs and there is anorther reception desk just outside the lifts. I was checked in and directed to the waiting area. And then I was collected and brought into the day ward.

The duplication and overstaffing of support staff is staggering. If these were private businesses they wouldnt waste the money. Is the NHS a job creation scheme for admin and clerical staff?
I think the treatment I m getting is second to none,but the cost of delivery must be horrendous.
But the people who make the decisions dont have to pay the bills, just ask the government for more cash or else close a ward or get rid of some front line staff.

As I said, I m grateful for the care and attention I get. I have been working and paying tax and National Insurance stamps for over forty years, so if anyone is entitled to NHS treatment I am. I just dont believe that we can afford the NHS in its present form.
Cameron, Brown and Clegg have all said that the NHS wont be subject to cuts after the election. That is just to ensure that the NHS staff will vote for them. The NHS is the largest employer in the UK and the fourth largest in the world. If cuts have to be made to stop the country going bankrupt, then the NHS will have to be cut as well.

I know where some cuts can be made that wont affect the level of front line care. You can start by closing down duplicate reception desks.

My bone marrow test went very quickly. I had a local anaesthetic and apart from being pushed and pulled while they dug needles into the bone in the small of my back, I felt very little pain. Ive had worse dental treatment.
I was back home by lunchtime and was told to rest up and not remove the plaster on my back for a couple of days.

I get the results in about ten days time.

Monday, 26 April 2010

Monday 26th April

Hi again. Another week has passed by. I have an appointment for a bone marrow test on Wednesday followed by an appointment to see the specialist on Mon 10th May. I should know a lot more after that.
If the treatment I've undergone so far has been successful I will be in remission and can concentrate on building up my strength and immune system. If not, then I will have the two courses of chemo that Ive missed due to illness.

The warm weather has been good. I can sit out in the garden or in the conservatory. Sue and I drove up to Derbyshire to visit a friend in prison yesterday, and I drove back via Loughborough and the Great Central Railway. It was late in the afternoon when we arrived, but still saw a couple of steam engines passing through the station. We go on holiday to Whitby in a couple of weeks and there is a steam gala on the North Yorkshire Moors Railway while we are there, so I expect we will have a trip on the train.

A few days ago I reported that another cat has been coming into the kitchen and eating the food we put out for Rufus. I caught him red handed last week but he escaped through the cat flap. He is quite a young cat and we dont know where he lives. He came back on Saturday morning and I was able to photograph him.

Heres the "Wanted Poster" I promised

Monday, 19 April 2010

Mon 19th April

I'm just back from a morning spent at the hospital. There were no queues when I went to have my blood taken, which is unusual for a Monday morning. Maybe everyone is stuck at an airport somewhere.
We then walked to the Centenary Wing Clinic to find that empty. Very strange. Where is everybody. We soon found out. The clinic was taking place in another part of the hospital so we retraced our steps, saying hello to a friend along the way. We arrived at the new clinic area, booked in and I went to be weighed. Another 3Kg heavier. I thought my jeans were getting tighter.
Eventually we were called in to see the specialist. He was not a happy bunny, having been evicted from the modern state of the art consulting rooms and forced to use a grotty and run down cubicle that didn't even have a paper roll to cover the couch. Or a stethoscope. Or a pad of sicknotes.
He made it quite clear to anyone within earshot how unsatisfactory it all was. And it was. Is.
It seems that the powers that be have decided that a unit that was based at Northampton is having the use of the Centenary Wing Clinic, and it's a shame because there was a continuity of care and a sense of being part of a community in the old location. And there were volunteers ready to make you a cup of tea.
Not any more.
Once again it has been proven that the people who take these decisions never have to live with the consequences, or else they wouldn't make them.

Anyway while all this was going on I sneaked a peek at the computer screen, where my records were displayed. There were tables of figures that showed various blood results, and it was clear that the numbers are going down. For instance, one column's readings for the last three months were 0.6, 0.5, 0.1. i don't know what that means but my specialist thinks this is very good, as all the other indicators show the same trend.

So what's going to happen? I'm still coughing and sniffling and I could see the doctor weighing up the various alternatives. This is what he's come up with.

Tomorrow's chemo has been postponed indefinitely and I will have a bone marrow test next week. This will determine whether the four bouts of chemo have done their job and I am in remission. If I still need more treatment this will take place at a later date.
I had a nasal swab for another test and received more drugs to keep me going for five weeks until my next appointment.

It could be good news. At least something's happening either way. I was getting sick of living in limbo.

Saturday, 17 April 2010

Saturday 17th April

Another sleepless night. This cough won't let up. It starts as a tickle and then builds and builds until I can't stop coughing. My chest muscles hurt and I've a thumping headache from where my brain is rattling inside my skull.
I'm supposed to have another bout of treatment next week. Will the specialist let it go ahead?
I'm fed up with it now.
I will be even more so if they tell me that my blood count is still very good, meaning that the leukaemia cells are negligible. I've been told that since before Christmas but I'm no nearer to completing my treatment because my non-existent immune system means I pick up anything and everything going.
Life is on hold.

I've caught sight of the cat that sneaks into our kitchen to eat all the catfood. He's a bit too quick for me but we've had a couple of staring sessions, once through the kitchen door after he'd made his escape, and last night I chased him out of the garden. I expect he'll be back again soon.

Wednesday, 14 April 2010

Wednesday 14th April

The doctors who are treating me tell me that the particular combinations of drugs that they are giving me play havoc with my immune system.
You can say that again.

My cough has returned with a vengeance. It's called pharyngitis or something like that. I don't have a sore throat as such, just a cough that won't clear anything. All the coughing gives me a headache. It used to be an annual affair, but this is the second or third time I've had it this year.
The last time I ended up in hospital being pumped full of antibiotics.
I keep ruuning through what might have caused it. Last week I spent some time in the garden and even managed to cut the grass (although it needs doing again). That might have set it off.

I've not had any chemo treatment since the beginning of February and there's a chance I won't be having any next week either. This delay keeps pushing back the date when I can resume "normal" life, whatever that is.
As it is, I'm sitting still because movement sets me coughing,and I'm monitoring my temperature every couple of hours.
It's life, but not as we know it.

Sunday, 11 April 2010

Sun April 11th

I'm writing this early on Sunday morning. It's been a nice few days and I've been able to get out into the garden and cut the grass. I've also had a go at getting the dandelions before they start blooming.
Chris has a full size pool table in the garden so we removed the covers to let the air get at it and played a few frames in the evening. Well, Chris played, and I pushed the balls around the table, occasionally potting a ball, usually the white one.

The longer I stayed out there, the more I noticed jobs that need doing. Chris made a start today by finishing off the edge of a patio that has needed doing for about 18 months, and we took a lot of junk to the tip.

After all that exercise I retired to the living room to watch the rugby. The Saints were playing Munster in the Heineken Cup and they took them all the way  but lost by over ten points. Still it was a good game and they're still in the hunt for the league championship. I ignored the golf and the Grand National and watched the last day of the cycling which was exciting, and then the qualifying for the first race of the MotoGP season, which carried on as the last season ended, with Stoner, Rossi and Lorenzo battling for pole. Should be a good season.

All this armchair sport isn't getting me fit, but the warm weather means that I can walk to the shops or around the garden without having to put on layers of clothing and heavy boots.
One more week to go before my next blood test and appointment at the hospital.

Oh, and I caught sight of the cat that comes into the house and eats all the cat food. I will be posting wanted posters shortly....

Monday, 5 April 2010

April 5th

Easter has come and gone and I'm still two weeks away from my next bout of treatment. I did visit a DIY shed over the weekend and some friends and family called around over the weekend. I even walked to the shops to get a paper.
It's not quite warm enough to get out and cut the grass, which hasn't been touched since treatment started. If it doesn't rain this week I'll have a go at it. I'm also making plans to plant some beans and other veg in containers and Chris has been talking about replacing our garden shed since last year. maybe we'll do it this year.
We replaced our back door. The old one was about twenty five years old and not very sturdy. A good kick would have dislodged the bottom panel. The new double glazed door has a catflap so that Rufus can come and go. He won't go in the house but finds my onion patch very much to his liking. Some mornings we find that all the cat food has been eaten, and Rufus has been asleep on our bed all night. Methinks we have a stray visitor.....

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.

Saturday, 27 February 2010

Saturday 27th February

Two days to go before my next consultation with the specialist and I'm feeling OK but tired. I did a bit more than usual this week. There were some computer issues that had to be sorted out at work so I went in for a couple of hours. Our son Chris has been ill in bed and was supposed to help a friend move some furniture. I drove the van but stayed out of the way when there was lifting to be done. The next day my daughter Jayne rang asking for a van as her firm were moving office. Chris was in bed so I drove the van down to Wellingborough and did three trips around the one way system.
Not even a full day's work in total, but-
I'm working on the principle of, the more I do, the more I can do.
However, this is a good week for me. I should have another bout of chemo next week.
I'm usually pretty sore by the end of that week and need a week or two to recover.
This will be the fifth session out of six. I'm hoping to complete the treatment by April.
I'm pleased with how it's going so far, but I don't know how fit I'll be when I finally get signed off, and how long it'll take before I'm back to full fitness.

Saturday, 20 February 2010

Sat 20th February

Almost nothing to report. I went into work a couple of times for an hour or so to sort out a computer and then get the legal software updated. My role in the firm is to keep us compliant with the ever changing regulations. Solicitors are almost the most highly regulated firms in the UK. This year so far I've had to amend the client care letter (our terms and conditions) to bring us into line with the new EU policy on the complaints procedure, and to include details of our indemnity insurance.
We've always had these systems, we've always had indemnity insurance. We have to have insurance or we can't trade. I just think that advertising that we have a complaints procedure and insurance is a big flag waving and saying "Here we are, come and sue us.)
Ok, rant over. I have my other blogs for that.
I'm still surprised how tired I am after these trips. I couldn't put in a full day even if I wanted to. Or maybe if I did, I'd never put in a second. Don't we just take our health and strength for granted?

What else? A friend called by on his way home from a business trip to the Midlands and spent an hour or so catching up on news. I had phone calls from friends and it snowed again.
I'm making good progress with the bass and I'm more in tune than out, so I'm looking forward to inflicting my playing on the public. Just be glad that my lifelong obsession was to learn the double bass and not the bagpipes.
I have another week before my next round of appointments at the hospital, and a month before my first concert of the year. And a round of chemo in between.
And then a holiday somewhere warm?

Friday, 12 February 2010

Friday 12th February

Another week gone. It's getting lighter so Spring's on the way. However, it's not getting any warmer.
I managed a couple of trips this week. I went into work for an hour or two, just to catch up. I can't believe how tired I was afterwards. I slept for more than 12 hours!
I also had to get my blood pressure measured. My BP has been high for about a month, and I was prescribed pills to lower it, with the instructions to visit my GP and have it measured. It should have occured last Monday. I was still very weak from the chemo so didn't get there until Wednesday. Unfortunately the surgery was closed for training.
I went to the eye clinic today for a check up. I persuaded them to measure my BP. I'm pleased to say that it's back to normal. And I was discharged from the eye clinic.

I collected my stick bass from my friend's and have started to practice playing it. It's quite different from my other instruments. It's fretless and you can't use a plectrum. (It's an electric version of a double bass btw). I've had a fascination with the instrument since I was a child. I love the tuneful thud it makes. I'm a bit late to try and emulate my favourite bass player Danny Thompson, who's been playing for fifty years or more, but I'll give it a go.

Le't's see what the next few days bring. As long as it's not snow.
My next appointments are on March 1st.