I had lots of trouble afterwards, I had tons of cystitis. I don’t know if I attribute it all to the radiotherapy but I’m not as well as I used to be. [My consultant] said it damages the immune system and I seem to get lots of colds and fluey things that hang around and I’m very different to what I used to. I get very tired still.

I think when I’m well I’m fine, but in this last year I’ve had, last July I started ear infections, never had them before in my life, and I’ve never really been clear till about just after Christmas last year. And I’ve had a really good month and just this week I started another cold again and it’s just started to go on my chest. And I bought that stuff today there, some herbal remedy thingy, and I’ve got Floradix tonic, and that’s supposed to be good for the immune system. And I don’t know, I suppose I feel, when I feel well it’s really great and wonderful, but I’m fed up of always having a cold or having an ear infection or something. And, you know, just to be told it affects your immune system, well fine okay but, you know, I’m five years down the line now, shouldn’t it be building up a bit and getting a bit better I feel? And I don’t suppose I go to the doctor very often, I don’t like to trouble [my GP] but perhaps I should write him a whole list of things and say when is my immune system going to get better then doctor? I don’t know, I don’t know if doctors have the answers, they can’t know anything.

Because I think to be fair I had something really, really severe, but its actual impact on me now, my immune system is clearly never going to be the same again, it takes me longer to get over colds and things like that than it ever did before. And I’ve had, I think I’ve had more colds and things like that, I get a flu jab every year now, so my immune system is clearly never going to be what it was, but because I’ve, I get tired, I do get more tired than I did before.

Now after about eighteen months, when I’d just got back to work full-time, I got shingles. Now apparently shingles is fairly common with people who’ve been through the treatment that I have been through, but I wasn’t actually warned about this, but in fact the shingles in some ways had a greater effect than the cancer itself because I had got back to full-time working. But with the shingles I’m now, let’s have a think, nearly four years on from having shingles, I’m still suffering the after-effects of the shingles, and I’ve had to take early retirement because I couldn’t cope with a full day’s work, I really need a rest in the afternoon. But apart from that I’m quite healthy now, but shingles did have a significant impact.

Whereas the cancer was a very, I think that cancer is a very emotional illness and it didn’t knock me at all physically, the meningitis was very much a physical illness. It really took my body apart. I was in hospital for 5 months with the meningitis. It took several weeks for them to actually decide that it was a type of meningitis, because it was a very rare form of meningitis. In fact, they didn’t at first think that it was meningitis; they thought it was the cancer had returned and had spread.

But once it was diagnosed I was put on to a well they described it as a low-grade chemotherapy, which was pumped into my body via my blood supply and it went throughout the whole body. And after about 6 weeks, 5-6 weeks they thought it was caught and that it was okay and that they would take me off this particular, it’s Amphotericin B, this drug. And they thought they would take me off that and everything would be okay, but unfortunately it wasn’t. Within 5 days it was back, the meningitis, which was a fungal type of meningitis, was back.

And so we had to go through the whole procedure again and my body was very much weakened. But this time they put the Amphotericin B directly into the brain and I’d had, I had a tube which is put into the brain so that they could put, take readings off, from the fluid directly off the brain. And then I had a shunt put in via the brain and that didn’t work, that furred up with the fungal infection, so they had to take that out. They put it in the brain, took it out via the brain and then they put another one in, the shunt went in at this level, and so again, it’s to take fluid off the brain. And it worked that time. They were saying, they said to a friend of mine, because I wasn’t really taking too much notice I don’t think at that time, they said to this friend, well if this doesn’t work, and if this treatment doesn’t work, then we don’t hold out much hope for a treatment, a course of treatment for another 6 weeks, the body won’t survive’, because I’d lost a lot of weight; I was a good 2 stone lighter than I am today. Yes, 2 stone and it’s, being 6 stone is, I’m not built to be 6 stone. I’m built to be more like 8½ stone, and so I had lost an awful lot of weight, I was being sick all the time, I was having Amphotericin B directly into the brain.

It was a physically hard disease, that was, compared with the cancer, which was an emotional, I just see them as two very separate types of disease. Cancer is an emotional, with the meningitis I felt very much as though it’s a physical thing, I’ve cracked it and that won’t come back.

You said you were quite prone to infections. Tell me
it’s the chest. it’s
hat kind of happens in a typical infection.

Well, the last chest infection which I finished, luckily I have a continual supply of antibiotics which I take if necessary. So this was suggested that I have this supply, and as soon, I start taking them as soon as I develop a cold, and then I see a GP as a, within a two or three days, which kind of carries me on over. This January I travelled over to the Natural History Museum at Tring because they had the Shell wildlife photographer of the year exhibition, which we have seen in previous years either at the Natural History Museum in London or Tring. And it was the end of the school holidays and the museum was full of children hurtling round. Now I do have one of those hand gel sprays which I always use when I’ve been in public places handling doors or hand rails or anything like that. And though I had sprayed my hands continually as I walked around I managed to pick up a bug on that brief exposure, which laid me low for four weeks. And when I say low I do mean low. And as my husband says, living with me is like living on a roller coaster now.

I would like to swim but I’m frightened of going to the local pool to pick up any bacteria. If I had a swimming pool in my own garden I would love to swim. But again, I need to have everything at hand so that if I’m too tired I can go and rest.

Nowadays if I get a sore throat coming, and sometimes I do as part of a cold, I immediately go the doctor and get some antibiotics, I don’t even have to go and see him, I can ring him up and say, I’ve got a sore throat, can I have some antibiotics Because he knows that if he doesn’t give them to me I’m going to end up with a very sore throat, and so get it early, kill it and it’s okay. I get the cold the same as, but I don’t get the sore throat, which on the occasions I have left it have been pretty rotten.

So do you have to be 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 their youngsters have got coughs or colds or stuff like that well, you know.

No, no I’ve had, when I was ill I had pneumonia as well, which was another issue I had to deal with, I think. My chest is not the best and I and do struggle at times, so I get a bit chesty or stuff, I have to down tools, so to speak, quite quickly now, which makes you think, Oh what’s happening?’ You know, Where am I going, what’s heading?’ And I do get a bit, but invariably it is what it says on the jar, I’ve got a chest infection, I’ve got, but I do get check outs and have antibiotics quite soon now. But I again I have to explain to doctors, we had to tell doctors exactly where I’m at in life because they don’t know you, they don’t know your history and you really do have to persist with them I think.

And explain to them why I don’t want to have a chest infection regardless of, you know, how it will come or go or whatever, that I need it to be cleared up for my well-being really.

Yeah.

I’m going to have to take prophylactic antibiotics for the rest of my life, but it, you know, occasionally apart from makes my stomach slightly sensitive, more sensitive, and occasionally I feel a bit sick when I get up in the mornings, but it’s very, very minor.

You know, I’ve not been called back for anything. You know, it’s still, well, I mean curiously on Monday, you know, I’ve not had a temperature for, since those last two occasions after I’d come out of hospital when I had to go back in, and suddenly I got a temperature on Monday and I thought, Oh, you know Not much of one but it was there. And I thought, Dear oh dear. What’s going to happen You know, but, the next day was back to normal.