Interview 07
More about me...
He experienced bouts of rheumatoid arthritis in his thirties and forties, which went away following treatment. He developed a sore throat that persisted for about 3 months despite taking antibiotics. Blood tests and a biopsy revealed that he had a low grade non-Hodgkin's lymphoma. In retrospect he realised that he also had swollen lymph glands in his neck and had been experiencing night sweats. The lymphoma also caused an inflammation of the cornea called marginal keratitis, which went away after treatment with eye drops.
He was treated with chemotherapy, initially intravenously, then in tablet form, but the lymphoma persisted. Any work that he was able to do during this time he did in his own time as he often had to break off and rest - sometimes for 2 or 3 days - before starting again. He eventually gave up work because this kind of unreliability made him totally unemployable, and moved to another part of the country. His new GP did further blood tests and referred him for more chemotherapy, this time intravenous fludarabine, which succeeded in putting him into remission.
After chemotherapy he was prescribed methotrexate and steroids for his arthritis, which he continues to take, and also uses a herbal remedy for the pain. In 2005 he had a hip revision operation and afterwards fell and broke his leg below the prosthesis, with the result that he has been immobile for several months.
Preferred to have needles put in his arm between his elbow and his wrist so bending his arm wasn...
Preferred to have needles put in his arm between his elbow and his wrist so bending his arm wasn...
Anyway I went in and I had the first batch of treatment which basically meant you sat there for well anything from two to five hours waiting for this stuff to drip in your arm. Got home, felt OK for the first couple of days and then it hit you, and basically it was fludarabine and it was destroying quite a lot of me. And as you went on your blood had to recover, and when your blood had recovered, usually about a month, you could then have another treatment. And you went back in again and for a week you walked around with this needle stuck in your arm, and to those of you who are hairy-armed, as I am, shave them before you go in because these little sticky pads that they have move around on the hairs and if you don't have bare arms believe you me it's painful. And don't have them put in the hand because you bend your hand too much, the arm is the only place, it's straight and you can't muck it up. Trouble is they do have a propensity not to be able to find a vein, but that's another story.
I insisted that they went, where possible, they went into my arm, between my elbow and my wrist so that the needle was actually into a part of my body which didn't bend. I mean what they like to do is put it in the back of the hand because the veins are nice and easy to see, but the hand bends which, although the needle is soft plastic, it still tends to irritate. You've got it in there for a week, it still tends to irritate and pull out, which means they've then got to go and find it or do it back again, and you're left at home with a needle hanging out or you've got to take it out and stop it yourself without the supervision. Whereas if they put it in the arm which has been shaved, the arm stays still and having no hairs on it the whole thing grips and you've got no problem. You're also slightly less likely to knock it because, as I say, this thing is in there from Monday morning through till, well, Friday afternoon.
He takes vitamin C every day to avoid infection, phones his GP for antibiotics if he feels a sore...
He takes vitamin C every day to avoid infection, phones his GP for antibiotics if he feels a sore...
So do you have to careful in general not to pick up infections?
People are more conscious of this than I am. My wife, for instance, was with somebody who had mumps and was infectious a couple of nights ago and, you know, we've spoken and waved since then, that's about it. She tries to protect me, she's very good that way. And the children also have been good about it, you know, if the youngsters have got coughs or colds or stuff like that.
And the other thing I do take is 1000 milligrams of vitamin C every day basically to try and stimulate the'.
Immune system?
Immune system, yeah. And if I can keep that active then'
Do you think that's effective?
I don't want to stop taking it and find out if you don't mind. I guess it's a question of belief. Yes I do think it helps, I don't get as many colds as I used to, although of course there's reduced resistance, I take the flu jab anyway every year, but I tend not to get colds and, you know, apart from the urinary infection, which is probably because I've been lying down a lot, I've been reasonably fit.
Delayed telling people as he thought he might lose business clients if they knew of his illness,...
Delayed telling people as he thought he might lose business clients if they knew of his illness,...
So you did tell them?
Eventually after about three months I found the courage to tell them. Well the vicar put it quite succinctly, he said 'We're all going to die, you've been told that you've got maybe seven years, you've got a chance to go and do what you want in that seven years and put it right.' He said, 'I could walk out of this house tomorrow, fall under a bus and I'm dead and my family are left in this terrible situation, so you're rather lucky actually', which is an odd way of looking at being told you're going to die, but it has changed my views. In fact when I told him after about three months it was OK to talk to people if people asked about me - because apparently people had been asking why was I changed - he said it's the hardest thing he's ever had to do. He said as a priest you get given many secrets, he said, but this was one of the hardest he'd ever had to do because he couldn't even tell his wife, whom obviously I knew fairly well.
Sold his surveying business but continued to receive part of the fees from his old clients and...
Sold his surveying business but continued to receive part of the fees from his old clients and...
Mm.
'through your illness and you were self employed?
Yeah.
So were there financial implications for you?
Yes we, as I say, over the first three years of stopping work, the firm I had, in inverted commas, sold my business to, they took over my clients and I got a percentage of the fees that they earned from those clients, which frankly helped pay off the overdraft. And in the very early days of going self-employed my wife had said, 'Right, if you're going self-employed the time is going to come, or may come, when you might be ill and not able to work and you've got employees to pay and you've got other things to pay, mortgages and stuff like that. Do you think you ought to take a permanent health insurance policy?' I had a brother who was involved in insurance and he got me a very good one. It didn't crack in for a year so we had a year when we just lived on my wife's money, but after the year it gave me, after some considerable negotiation, it gave me a reasonable income so that we weren't totally reliant on her money. But unfortunately it only lasted until I was sixty-five so it has now stopped, and now we shall find out whether the investment we made in the small property in Watford and then sold and have reinvested elsewhere, whether that's going to give us sufficient income to live on.
And you must've had some pension schemes?
No.
No?
Well by the time I became self-employed and got to the stage where I actually could put some money by, I was beginning to get to the stage where in fact there wasn't any money to put by because I wasn't able to work the way I wanted to work.
In place of the job he'd had to give up, he learned how to sail, bought a boat, fitted it out and...
In place of the job he'd had to give up, he learned how to sail, bought a boat, fitted it out and...
The upshot of that was at Easter we did a competent crew together, we did a day skipper theory together, I did the day skipper practical in the September and we bought a boat in November.
You're then feeling pretty horrible, weak, can't do much and it was during this time that the boat really came into its own. I didn't sail, it was on the water or in the yard, the great thing about it was that I could dream. I could dream where I was going to go, what I was going to do, how I was to improve the boat without spending an absolute fortune in the chandlers. What ideas I could gather from the magazines and adapt, what ideas I could take from my experience as a surveyor and adapt for the boat. And obviously as a surveyor you have to do drainage and sanitation, water supplies and things like that, all of which you could use because basically a boat, or at least a cruising boat is a little home, got to have all the same sort of things. And eventually I managed to achieved my dreams, I sailed across to France and over a period of three years spent four, six and then eight weeks in France over three separate summers and had crew come and join me so that I could sail with people who knew what my situation was. And well, as I say, just achieved my dreams and go through some experiences like coming back across the channel with no wind, under engine.