Sunday, 14 August 2011
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
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
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