Monday, 26 December 2011

The ugly truth

First of all to anyone who drops in to read my news- may I wish you all a Happy Christmas.
here's the update on my nose. As I may have recounted, it all started back in the summer when I had a spot on the end of my nose. Nothing unusual, except that this spot would not heal. I asked a doctor to look at it when I was at the skin clinic and he suggested I see a specialist. He told me it was a sub-basal carcinoma.
This is what it looked like about a month ago.

As you can see, it was tiny, but it looked enormous to me. There came a time when it was the only thing I could see when I looked in the mirror.

I had an operation to remove it. This is what my face looked like a couple of hours afterwards.

I had the stitches in for a week. There was a large red scab on the end of my nose for most of that week. At last I had the stitches out, revealing this:

I have an appointment in a month or so when the surgeon will tell me the results of the biopsy. I suggest that if any of you have a mole that is getting bigger, or has an irregular shape or bleeds from time to time- get it checked out.

It might just save your life.

Tuesday, 13 December 2011

Minor ops etc

I've said before that I'm slowly visiting all the clinics and departments in our hospital. The other week I had an appointment with a specialist to try and sort out my colitis. Since I came off tour with a severe throat infection and diarroea back in July I've had my appendix removed, had x-rays and a CT scan, and a procedure known as a sigmoidoscopy. I now know that I don't have diverticulitis, and that a biopsy of the areas of inflammation they could see have not revealed any clues.
So I went to my appointment hoping for a successful diagnosis. I got some pills to take, and another appointment in the new year.

I had an appointment today at the treatment centre to have a growth on the end of my nose removed. The doctor diagnosed a sub basal carcinoma- but when he looked again he's not so sure, so we won't know what it was until the biopsy result comes back.
The operation went well. I sat back on the operating table, closed my eyes (the light was very bright so I had a swab to cut down the glare. The surgeon injected my nose with a local anaesthetic, and we chatted away while it took effect. All I could feel was my nose being pushed and pulled and before I knew it I'd been stitched and returned to the ward.
I stole a look in the mirror. What a sight. My nose was a pale sallow white, with a lurid and bloody scar criss crossed with black stitches on the tip of my nose- which was swollen. Not a pretty sight.

That should complete all my treatment until January, when I have a return appointment to check on my finger.

All that remains is to wish you all the compliments of the season.

Thursday, 24 November 2011

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 ( it went well. I was very tired from standing all night and so slept well.

Sixteen months of remission. All good.

Sunday, 13 November 2011

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, 14 August 2011

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.

Monday, 8 August 2011

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.

Thursday, 4 August 2011

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

Saturday, 7 May 2011

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.

Tuesday, 15 February 2011

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.