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!

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.
http://daveclemo-touringwithnicki.blogspot.com/

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 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 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 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 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.