May 7th

It's a few months since I last posted, but no news is good news. The treatment on my finger seemed to work(see my last post)and I'm about to start a course of cream to get the bits that didn't get the full treatment. It'll take six weeks and I'm told it might be painful, so I'm putting off starting it until tomorrow.

What else? I'm still at work three days a week and as long as I manage myself and don't do too much I'm OK. I'll be going back to work full-time in September when the student I'm job sharing with goes off to Uni.

I've got a new band and we're out playing the local open mike nights as featured artist. I'm really enjoying this. The band are all friends and we're having a good time entertaining the audiences. We'll be making a showreel soon and pushing a few doors to get some paid work.

Paid work. I was better off when I was on the sick. My critical illness insurance took care of the mortgage and I wasn't spending anything. However they only pay out for one year. I was glad to get back to work, but working three days a week instead of five means I'm only earning 60% of my previous salary (which was way below the national average in any case).

In about two months time (God willing) I'm back on tour with Nicki Gillis and I just know we're going to struggle because the venues just aren't (or can't) pay anything like a fair rate for a four piece band. We've air fares, hotel bills and diesel to fork out, so there won't be much left for paying household expenses....

Never mind. I'm in a much better place than I was 18 months ago. I'm fit (ish), healthy (ish) and all my teeth are paid for. (I went to the dentist who scored my teeth at 82%- whatever that means). He then said I have to have a crown replaced. That sounds expensive if you ask me.

Life is good.

First three monthly check up

It's been a while since my last post. I'm getting back into the swing of things. I'm still not fit enough or strong enough to work full-time (will I ever be?) and I still get tired, but hey, I'm a lot better than I was.

Last week was notable for two things. Firstly I had my three monthly checkup and the doctor is happy with the blood tests. He'll keep me on Co-Trimoxazole for another three months and that's it. I did mention that I had an attack of gout after eating too much liver and he said he'd ask for further tests on my blood. If the uric acid levels are up he'll write to my GP and get him to prescribe some allopurinol. I enjoy food like fish and liver. It would be a shame to have to stop eating it.
I've also been having treatment for the skin condition on my finger. I've had this patch of scabby, scaly skin on my index finger for years. During the winter the cold gets into the fissures and it's painful. I was referred to the dermatologist at the hospital who carried out a biopsy. This revealed that it was Bowen's disease, a pre-cancerous skin condition.
A couple of weeks ago they called me in for some Photo Dynamic Therapy. Basically they cleaned the skin, removed the scabs and covered the affected area with a cream. This was left covered up for three hours and then a bright red light was shone on it. The procedure was carried out by a nurse. We both had to wear cool shades for the seven minutes that the light was shone on my finger.
The first time the procedure was carried out it was a bit prickly and painful on the affected area. Because it was light and not heat, the rest of my hand was unaffected. I was sent home with a throbbing finger which was painful for a couple of days and which scabbed up again.
The next week the procedure was repeated, but this time it really hurt. It was like holding a lighter to your skin for seven minutes. The nurse spayed cold water on my finger to try and ease the pain. We talked about anything and everything. Anything to take my mind off the pain in my finger. This was truly the most pain I've endured for a long long time.
But I endured it. The dressings came off after a day or so and as I look at my finger now the skin is healing and the scabs are dropping off. There's still a patch where the light couldn't reach so I may need another dose in a few months time, but it will be nice to shake hands without an unsightly mess on my finger.

I said two things. I meant three. I must be getting back to normal because I have regained my appetite for tackling some outstanding problems at work. Software installations, updating records, researching and problem solving. All back on track.

And another thing. I had my hair cut to celebrate going into remission. That was three months ago so I had a couple of inches cut off to maintain the look.

Gout

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 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.

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.

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.

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 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

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.

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
http://clltopics.org/Complications/RealPain.htm
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 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 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 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 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 www.dave-touringwithnicki.blogspot.com
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 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
http://www.facebook.com/?ref=home#!/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 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?

Update

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.

http://clltopics.org/Complications/ITP.htm

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 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!