November checkup

I had my checkup a day or two ago and nothing much to report really.
My blood results are good. My weight is steady. My other conditions are under control or in the hands of other specialist departments at the hospital. All good.

I've been taking Aciclovir for a few months following my throat infection back in the summer. I've also been taking septrin for the last 16 months or so. These have both been discontinued, leaving me with a daily dose of allopurinol to minimise the risk of gout, and omeprazole to keep the acid reflux down.

I played a celebratory gig with my band last night (www.facebook.com/daveclemo)and it went well. I was very tired from standing all night and so slept well.

Sixteen months of remission. All good.

November 2011

It seems a long time since my last post. My Appendix operation has healed and the scars are faint; I've had a sigmoidoscopy which revealed some inflammation but the biopsy couldn't find anything. I'm still getting problems but nothing like as bad as before. I have an appointment to see a specialist next month.

It seems that I've visited every department at the hospital. While undergoing treatment for CLL I had to see the eye specialist because of a bad attack of scleritis (which turned the whites of my eys to a lurid shade of red) That's currently cleared up, but my CLL specialist is keeping a watch on that.
He kindly referred me to a skin specialist about a year ago because my right index finger was looking very sore. It was diagnosed as Bowen's disease, a pre-cancerous skin condition, and two does of Photo-Dynamic- Therapy has cleared that up for now, and although the skin still continues to crust up, the lesions have healed.

I asked the skin clinic for treatment to rid my hands of some warts. They've blasted the warts with liquid nitrogen three times so far, but they're still there. It seems that my compromised immune system is allowing the virus that causes warts to thrive. I go back for a checkup after Christmas, so I'll ask for some more treatment then.

When I had my last appoinment at the skin clinic, I asked them to look at a spot on the end of my nose. I still get the occasional spot (I had really bad acne as a teenager) and I think I had a spot on my nose back in the summer. It never healed but would continue to bleed from the scab. They decided that it was pre-cancerous so made me an appointment at yet another department.

I had the appointment last week and was told that it was a basal-cell carcinoma, a type of skin cancer, so I will have a small operation in the coming weeks to remove it.

So although my CLL is under control, there are a number of other issues to keep the doctors busy. I'm working my way through the various hospital departments, and getting to know people all over the hospital. To illustrate this I had to walk through a clinic area on my way out of the hospital last week, and all the staff knew my name.

Is this a good thing?

Sunday 14th August

What a strange week. I was discharged last Monday and by Thursday my throat was so sore and my diarrhoea so bad that I just had to contact the Haematology dept again. My specialist arranged for me to be seen at the Surgical Assessment Unit at the hospital. They said I was to go right away and that they were expecting me.

Wrong. They looked bemused when I turned up. I spoke to a nursing Sister and she sat me in a day room, effectively placing me into quarantine. I sat in the room in an uncomfortable chair from about 11 o'clock until tea-time. Someone brought me a cup of tea from time to time and I was given a sandwich to eat. It was agony to chew and swallow, but I was so hungry.
Eventually I found myself back in the side room I'd vacated a couple of days previously. Two hours previously I was asked what I'd like for dinner. At the third time of asking it finally arrived and I tucked in during visiting time.
During the evening the duty doctor called around and asked me some questions took some blood. It was quite hard as my veins had taken quite a bashing over the previous week. She tried to fit a canulla without success.

That night I lay in bed and tried not to listen to the sounds of grieving parents in the room next door. Their young child had died in their arms.

The next day came and went. I managed to provide a stool sample which confirmed the absence of any of the known causes of diarrhoea, as had all the others.

The Haematology team put in an appearance at my bedside and we discussed my symptoms and the possible causes and remedies. They requested that a viral swab be taken of my mouth and throat, as once again the previous tests had eliminated all the usual suspects. No candida, heliobacter, etc etc.

One of the team made a very useful suggestion- apply Bonjela to my tongue. So I did, and it helped. I continued to eat everything placed before me in the hope that my "output" would become more substantial and not be just a runny mess of damp farts.

I was visited the next day by two members of the surgical team who said that they could do no more for me at this time. I'd only been called in because I needed a colonoscopy, and it appears they won't do one until six weeks after my operation. I was fed up, tired, bored, missing my home comforts, and ready to leave that minute, but I still needed the approval of the Haematolgy dept.

They didn't call in to see me until mid-afternoon. I was also waiting for a prescription but the doctor decided that this could wait until after my out-patient appointment next week. So I got dressed, picked up my discharge letter and went home.

In all the time I was there I wasn't officially admitted. I never recieved a name tag with my details on it. I never received my first discharge letter either. I think there is a reason for this. NHS rules state that if a patient is readmitted for the same reason within a certain time frame, then the hospital is fined.

Perhaps by holding back my first discharge letter and not "readmitting" me after I'd been home for two days they might be trying to make it appear that I'd been there all along.

Mon 8th August 2011

Having gatecrashed the haematology clinic last Monday in order to see my specialist, and having taken all the medicines prescribed, it was clear that nothing had changed and that all was not well. On Thursday I contacted the clinic again and was called in to see my specialist in a side room.

The tests had confirmed that I hadn't contracted candida or any of the usual throat infections. I'd also started getting a sharp pain in my right groin. My specialist decided that I needed to be brought in for observation and treatment. He spent long hours organising a bed for me on a medical ward and I finally moved there in the late afternoon. Unbeknown to me the hospital was full- chocka- and everyone was at full stretch. I had a terrible time getting admitted and going for tests. I was supposed to be put on a drip. This didn't happen for at least four hours. The canulla fell out in the middle of the night......

The next morning (Friday) was no better. I went for a CT scan and instead of being hooked up to my drip upon return (I was on nil-by-mouth) it took almost three hours and a lot of shouting before it was done. Then a surgeon arrived and said they would be taking my appendix out - hence the nil-by-mouth.

The operation went well. I was transferred to another ward to recover- one without a view from the windows. I had very noisy neighbours as well. I made a good recovery and they were going to send me home two days ago- but for the involvement of the haematolgy department.

Sunday came and went. My mouth developed blisters and I struggled to eat or swallow anything. I was off the drip, apparently able to take in enough food and liquid for myself. It was plain that I was not.

Today (Monday)both the surgical and haematolgy teams agreed I should be discharged. So I was taken downstairs to the lounge ready to be picked up.

Not so simple. I still had to wait over two hours for my prescription drugs to be made up.

In all this, my specialist, probably the only Consultant at the Hospital who would take time to do this, called in explained what was going on.

There is a possibility that although my appendix was inflamed, it wasn't the cause of my diarrhoea (which I still have although I haven't eaten enough to be sure)
Later this week they will insert a camera into my bowel and take images and samples in order to identify what is wrong. It could be diverticulitis but my continuing throat infection, ulcers et al, would say not.

But what is it? Time and more tests will tell.

4th August 2011

I've not posted for a few months because there's been nothing to report- until now.

The last time I went to see the specialist back in June he gave me a clean bill of health. Because of my tendency to attacks of gout after eating liver (one of my favourite foods)he prescribed allopurinol. I have to take it at a specific time of day and such is the nature of my current lifestyle I've not been able to take them regularly.

Nicki Gillis arrived at the end of June for a four week, twenty one date tour. Last year I suffered badly from mouth ulcers but survived, having spaced my chemo treatment on either side of the tour. This year I have not been so lucky.

The first thing to go was eating regularly. I made sandwiches and bought supermarket pasta and ate as much fruit as I could, but I couldn't maintain my regular drug intake. First to go was the allopurinol, then the co-trimoxazole. I started getting mouth ulcers within a day or two of starting the tour, but it was nothing I hadn't handled before.

Nicki was offered two more shows, plus a TV interview and about six radio shows (of which I played on two). This meant that on the third week of the tour we had eight shows in seven days, spread out right across the country.

We started in Widnes (near Liverpool, then travelled overnight to North Devon where we stayed in a caravan and played a show. We slept during the day, played the show and then slept overnight before driving back up to Derbyshire. I think it was then that I started to get ill. The rest of the week involved even more travel. On Friday night we were just outside Doncaster. On Saturday afternoon we were near Evesham and on Saturday night we were in Corby. By now I had constant diarrhoea but was able to get through the shows.

The final week saw us play most nights. Immodium kept the diarrhoea at bay but my sore throat got worse and worse. I managed to eat Sunday lunch with Nicki and Tracy (her manager) before they returned to Australia, but since then I've felt really ill.

I had an appointment to have treatment on my finger last Monday, so I gatecrashed the Haematology clinic and persuaded them to examine me briefly. I had a mouth swab, blood test and gave a stool sample. My specialist prescribed a mega-dose of aciclovir (5 pills a day instead of the normal two) plus a double dose of fluconazole in an effort to clear up my throat and as I write, I'm waiting to hear back from them.

I've hardly eaten a thing since Monday as my tongue is too painful to chew and my throat too sore to swallow. I did manage to sip my way through a cold can of chicken soup yesterday, but couldn't manage half a plate of scrambled eggs at teatime. I recall that my weight about a month ago was about 105Kg. It's now 98Kg and dropping.

I hope they are able to diagnose what's wrong soon.

This looks like the end of my professional touring career. I can't afford to place my health at risk any more.

UPDATE- I have an appointment at 12.00 to see the specialist

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.