Is there any connection between your meningitis and the epilepsy or have you always had epilepsy?

I’ve always had epilepsy. I’ve had epilepsy since I was 15, I had a first fit when I was 15 and I had occasional fits throughout my teens and 20s, and then I decided I wanted to learn to drive, so I thought, Well, I’ve got to change my lifestyle a little bit then’, because I probably enjoyed a glass too much of wine, staying out too late. Well the things you do when you’re in your teens and your 20s, staying out too late, going to discos, bright lights, flashing lights, too much to drink and then an early morning. And if that happened I had a very much increased risk of having a fit. And so although the fits were occasional, when I say occasional, perhaps about every once or twice a year, that’s all, it did stop me from learning to drive. And I thought, well I want to learn to drive, so I’ve got to change the way I act, and I did and I learned to drive.

And in terms of fits since the meningitis, I did have fits in hospital because of the meningitis, because of the swollen meninges, and yes the epilepsy came back. I had about 4 or 5 fits because of the meningitis but then since the meningitis has gone I haven’t had a fit. So I had the meningitis in 1994, June 1994 and it’s 9 years now. So it’s 9 years again since I last had a fit. And it’s only, it would have been 20 years had I not had meningitis.

But the epilepsy is extremely well controlled. I am on a number of drugs for that. Hopefully I will, I’ve been moving towards removing Phenobarbitone; I’m on Phenobarbitone and I don’t want to be on Phenobarbitone and the consultant feels that I should actually stop taking Phenobarbitone over a number of months, reduce the dosage. And then I will just be on Tegretol 400mg, 2 tablets a day, which apparently is a very low dose for maintenance, a fit free life.

Today, do you have any symptoms at all as a result of not having a pancreas?

No, I don’t think so, no.

That’s remarkable.

I don’t think so. I think the only thing I’ve had picked up, mainly because they lowered the, the bar, I take a little bit of metformin because my resting, fasting blood sugar went, it used to be, I think the guide was about where I was, but they dropped the bar. So now they’re diagnosing a lot more.

Diabetes?

Type 2. But I, but [my husband] doesn’t xx.

So do you take anything?

Just metformin twice a day.

How do you spell that?

M e t f o r m i n. it’s the sort of starter drug for, but they’ve discharged me for the time being because I don’t think I’m going anywhere.

And can you more or less eat anything?

I’m not very, particularly careful, no. I mean I don’t eat a lot of sugar. I eat a lot of fruit and I eat a lot of, because whatever’s in season I eat probably to excess. If it’s, you know, nectarines, it’s too many nectarines, if it’s grapes, it’sBut, no, I think I just try and lead as normal a life as I, sensibly as I can. And that’s it really.

I think maybe it sort of made me a bit twittery about other things and health-wise. I’ve got a heart murmur. But that again they said shouldn’t bother me. But if you get pains and aches and bits and bobs and you think, Oh gosh, I wonder what’s happening now Whereas maybe you’d just think, Oh, that’s just a pain, you know, it’ll g, sort of thing. And I try not to sort of rush to the doctor and say, I’ve got a pain here and a pain her, because, you know, they’d be getting fed up with you. But that’s about it, I think, yes. I think, I just feel like anybody else now I think.

They’ve been very good; if I have any concerns they’ll follow them up. You know, part of my concern was I was having problems with my bowels, and they did follow that up, I had a full investigation, which then discovered that I had IBS. I also had some problems with one of my breasts, it was still leaking milk when it shouldn’t have been, and they followed that up.

Does your IBS pre-date your ovarian cancer?

I’m not sure, I think I probably did have a tendency towards it, but I think it’s become more pronounced since then, which of course gives me all sorts of issues as well about eating lots of fruit and stuff, I do find that hard. No I think it probably has been exacerbated by
Because the symptoms can be very similar, so I was wondering whether if you had IBS before your diagnosis whether the symptoms could have been confused.

I think I was probably starting to get signs of it that, that you’d, that everything was happening anyway. I think my body was just a total mess and that I was depressed, I was just quite newly, a new mum, so there were all sorts of changes happening in my body and I really am not sure what to attribute them to.

But the IBS has continued after your hysterectomy, so it can’t just have beennbsp;

No, I mean it, I think, initially when I was diagnosed with that I was quite concerned because I thought it was bowel cancer, but I have been reassured, I mean they tested me and everything that there’s nothing there. I think that you tend to lose a little bit of faith in your own body and you always think the worst now. But my doctors have convinced me now that I can have other illnesses apart from cancer and they’re not all related.

So do you want to talk about your melanoma that you got subsequently?

Yes, about, must have been now three or four years ago, I had developed a skin melanoma, I’m sure I didn’t, no, I just got a brown mark on the side of my face there. And I eventually went and got it checked out and they said, Oh my gosh, you know, this is malignant Fortunately, they got to it just in time and cut it out, it hadn’t spread. But there’s a certain depth, and if it goes, mine was just below the depth at which they worry that it might have spread to the lymph nodes, and they checked those all out. And I was very lucky because I had some surgery, plastic surgery done on the side here, was absolutely first class and you can’t see anything at all now.

And at the time I was told that it was, you know, this was all I needed, one more thing to worry about. And at the time I was told that it was almost certainly sun, you know, too much sun when I was younger, probably. And although I’m reasonably dark skinned I’m apparently, I always thought I was fairly dark skinned, by their standards I’m not. And they thought it was unconnected to the CLL but I have read somewhere that there might well be a connection between the two. And I’ve never had a satisfactory answer. People sort of shrugged when I’ve said it, consultants but, as I said, I read somewhere that’s there’s an increased likelihood of it. I think it’s actually in my CLL book. So I don’t know whether that’s something that people who’ve got CLL might want to be more wary of.

I then was sent a letter, suggesting I should have a DNA check, because I’d had it twice and they were againthis was slightly different cancer so it showed more they said a predisposition towards cancer than just breast cancer. So I did, I went to a [name of city] hospital and they took a sample and it came back that BRCA2, which is one of the genes apparently that protects you from cancer, was altered, which put me at a greater risk of breast cancer and prostate cancer, and suggested I had my prostate examined, which I did. It felt normal, the normal sort of feeling at the examination but they decided that, under the circumstances, they would do a biopsy, which proved to be positive that there were some very early signs. It wasn’tit was more than nothing but it was signs of altered cells, pre-cancerous I think they call them or something, so, you know, they discussed it with me and somewhat reluctantly I had a prostatectomy, which was a much bigger operation. It involved more than just an overnight stay in hospital. I was in a week, it was very unpleasant, I had a lot of pain and it wasn’t a nice experience at all.

And you did say when you were talking about the prostatectomy, that you were a little bit more reluctant to go ahead with that operation.

Yes, I think there were twoone of the factors was of course, that I’d probablyaccording to the, again very good support from a prostate support counselling nurse, that I would have probably not actually seen any symptoms for six to eight years. Also, there is an age cut-off point to when they will not do that operation. They will offer you something else. They couldn’t offer me radiotherapy because I’d already had what was pretty close to the maximum dose that people should actually have, so there was no real other option because the hormone treatmentit’s really for people who have advanced cases. So it was a little bitrsquo;this is whatyou can either do nothing or have a prostatectomy’, and in the end I, a bit reluctantly I will admit, I went for it becausethey said, well you’re still young and fit enough to do it. If you leave it and you become unfit, we won’t be able to do it and the treatment will be far worse, and so I was, you know, a bit reluctant but I did, you know, have it done. It was not a good experience.

No, I mean, I’ve very much coming to termsI’ve come to terms with it, I’m living with it, it’s notit’s just a path that many people have to take. I mean, I’m not unique and although I feel a bit sorry for myself now and again, but here I went from a position of going to hospital after accidents or because of kidney stones, taking no medication except related to them, to having fifteen things on a repeat prescription. All caused by the cancer, not specifically caused by the cancer but caused by the treatment for the cancer.

Yeah, the domino effect all the way?

it’s the continuing grief from the treatment that people tend to forget. They think, oh no, they’ve cut the cancer out of him, they’ve given him chemotherapy, that’ll be him, fine, and it’s not true. The number of people who must be like me and have constant and continuing problems caused by treatment for cancer
Yeah, physical consequences and the emotional consequences as wellyeah.

Yeah, it must be a huge number, or a high number of people.

Yeah.

But you have to beI’m very aware that all my medical problems now can be directly related back to the cancer treatment.

Yeah.

And I must not be unique in that sense.

And do you everwould you every say you felt fit and well these days or

No.

No. So you really feel like you’re living with the legacy of the illness.

I would always say I’ve never felt well for years, because I don’t feel well all the time.

And that’s a real contrast to how you were before.

But it’s not something that I go on and on about. You come here to visit me today after over the last few weeks I’ve had a whole barrage of blood tests indicating things that are high and low, and I’ve had a whole load of symptoms which have worsened. I’m very sore in my bones and can’t sleep. I have serious cramps in my leg. I’m tired, depressed. I feel a bit depressed because I know when
You recognise that feeling now after
So I had that feeling that this depression is returning, and they tell me I have low calcium. One day, the next time I have low phosphate, and I’m thinking, well, these symptoms can all be related to that, because I don’t hang about, I do some reading up.

Were you working at all at the time of your illness?

No. What happened was we lost my mum in 88 and it started my rheumatoid off, in 1988, that’s when I actually got the rheumatoid arthritis, and they said it was the shock and the stress of that. And in 2001, as I said, everything was just plodding on nicely and then the one, I don’t think there was anything dramatic or anything that happened, and I just, as I said, I just started losing weight and then finding out that that had happened. But there was nothing that had stressed me up in any way or anything like that. But I’d actually suffered with the rheumo for fifteen years, well no thirteen years I think it was, yeah thirteen years then.

So was that the reason you stopped working or were you not working before that?

Yeah the reason I could, because I got so bad I was having gold injections every week. When my mum died I’d just got made redundant as well, it was just everything happened to me in 1988. And I was just so stressed out with my mum going, getting made redundant and it was, we actually had to go on holiday, I mean we didn’t have holidays at home and we actually went on a holiday that year. But as I said, I got the rheumatoid, and it’s just, it’s a crippling disease and it is and it’s left its mark on me. But it just got so bad that I couldn’t get out of bed in the morning at all. And we used to live in a bungalow and I just, because I couldn’t do stairs and I just could not get out of bed in the morning, I used to lay there and I’d just stay there and it would be dinner time before I could attempt to get out the bed. I used to cry because it was that painful, you couldn’t hold anything, walking, it was like waking on coal, everything about it.

My kids were really, really good, you know, I mean my children have grown up knowing that they had a poorly mum for a lot of years. And fortunately they were old enough, you know, to sort themselves out, which was a good thing. So, but I spent most of my life in bed for a lot of years. But it’s like I’ve got my life back now, I’m just starting to get my life back, it’s nice, I like it. And that’s all down to the rituximab, which is, like I said, it’s the same treatment for the lymphoma. Just amazing really is that. I’m lucky in a way that I’ve got the both and they can treat me with the same stuff, it’s like killing two birds with one stone. Mm.

Mm, so having the lymphoma and the treatment for it hasn’t really interfered with your daily life very much because you coped very well with the treatment.

Yes, yes I did, yes

And compared to the arthritis it hasn’t had much of an impact on you?

No the rheumatoid has been the worst part of my life. The cancer part of it, the lymphoma was just a blip in my life that I got over it, and I did. And I think that’s how I look at it. It wasn’t as bad, I know it was dangerous, but I mean I look at the rheumatoid, you can die of rheumatoid arthritis, so it’s one of those things, you know. And having the cancer as well was just, you know, just an additional little bit to it. But that went and, as I said, the rheumatoid, well they said it would probably be with me for the rest of my life now. They said it doesn’t, it will burnt itself out, but when? It could be a long, long time and, as I said, everything is chronic now because I’ve had it so long, but

Okay. You do get little problems. You think, Oh, don’t feel that but that doesn’t feel right And you’ve got to be careful you don’t end up being a hypochondriac, but it was the leg, you know, and, Oh, dear. Now what

Like I said to you, a hip, good God. I wonder there is no, something about chemotherapy, I wonder about chemotherapy because in my family there is no trace of, well, my mother died of cancer but very old, she was very elderly. There’s no trace of cancer. There was no trace of arthritis. There was no trace of diabetes and, which I’ve now got, and I just wonder whether the, and, you know, my chemo was strong. He asked if I’d like it weakened and I said, No. I’d rather keep it as it’s going And it was horrendous. And I wonder whether, as chemotherapy does, destroy certain parts of your body or operations of it, operations in your body, whether that might have promoted the diabetes, possibly arthritis. But you’ve got to blame something.

I don’t know what to blame. But that’s it really.

Do you think that nowadays things like diabetes and arthritis are actually more important health issues than having cancer, or can you

I think they’re just as bad, or they’re all equal. You know, a cancer, if you’re fortunate, you get over it, but that’s when diabetes becomes a bigger health issue because you’re living, well, I’m living with cancer but you tend to forget. But I’m aware of diabetes all the time because I measure it. Well, I only take tablets but I measure it and I regularly get a telling off from the diabetes nurse and if you’re overweight, you’re underweight. And I do exercise. I haven’t done any for a few weeks but I do go to the gym. Three or four times a week I’ve been going. Arthritis, you can either live with it, as I was told, or have an operation.

He said, If you live with it will get worse and then the pain will go but you won’t walk properly again And I didn’t have a decision to make. I just said, Oh, well, I’ll have the operation I feel, I said, I can’t live like this and I don’t want to be limping all my life. I’ll have the operation. I’ve got too much As I said earlier, I’ve got too much to do. Obviously, I can’t do the strenuous things I used to be able to do. I can dig big holes but it takes me a lot longer, if you do it like I do in the garden, putting fencing up. I do put fencing up and whatever, garden construction, but I can’t do it in a week. It takes me a month, but as you say, about the health issues, at the time of getting cancer it’s the end of your world.