Lymphoma

You said to me earlier that you had loads of infections?

Oh yeah, I did, yeah.

Is it difficult to avoid that with having a small child who's…

Yeah.

…at school?

Yeah. Since being in remission the first time I seem to get more colds and coughs that go more quickly to my chest than other people do normally. And I think I am pretty infection prone but yeah, I've also got a four-year-old who brings all sorts of runny noses and stuff home from school. 

I did have quite an alarming period in hospital during my first chemotherapy actually, which is probably worth mentioning. Because I became neutropenic so quickly, on just one occasion I had a really fairly serious infection. And I remember waking up. Well I remember putting my daughter to bed for her nap and thinking, “Do you know I think I'm going to go to bed too”. And I woke up about two hours later when she woke up, and realised that I was really quite seriously ill. And my husband was at work and I rang my sister and I said, “I'm pretty sure”, well I had a very high temperature. I had a temperature of thirty-eight-and-a-half, and I said, “I've got a very high temperature and I feel terrible and I don't think I know how to get the bus to the hospital from here”. And she was so alarmed by the way I was sounding that she just, she was in the middle of a mock exam actually and she just dropped everything and came. And so did my friend, and he looked after my daughter while my sister took me to the hospital. 

And she says that she left me at the hospital being, you know, immediately I was put on an antibiotic and a saline drip. And she felt when she left the hospital that she wasn't sure that she was going to see me again. She really was that concerned about the whole thing. And I just remember feeling terribly, terribly ill like I had really bad flu. And suddenly I was lying in a room in A&E and there were dozens of doctors everywhere. And I thought, “Goh dear, how many doctors does it need just to put me onto a drip?” But looking back on it and filling in the gaps, I did have a bit of a crisis in terms of my blood pressure plummeting, and there was a real sense of anxiety and urgency that I was very, very sick. 

And my husband was sending out emails to up-date people on my progress that said things like, 'she's stable and being given fluids' and stuff. And that was something I actually found that whole episode, I was then in hospital for a further week. That was something I found quite difficult to come to terms with because it happened so very suddenly. I went from feeling fine to feeling ill, but also I really didn't understand what was going on at the time. And I was desperately ill and didn't know, didn't understand. And it took me quite a long time to come to terms with that. 

And that was a lesson to me in acting quickly on a high temperature because my deterioration was extremely rapid. So within two hours I was really very seriously ill. And I think that up until then I probably hadn't taken quite seriously enough some of the, you know, 'If you feel ill, if you have a temperature, you need to get in touch with A&E straight away'. I don't think I'd taken that seriously until it happened.

Tell me a bit more about the episodes of infection you had with your Hickman line. How often did that happen?

I had the Hickman line in for six months and I had seven infections. The worst one I ended up in hospital for six days. They would happen when the blood counts dipped really, really low and my neutrophil count was quite low. They picked up on most of them quite quickly through the blood tests that they would do every couple of days. Had intravenous antibiotics for all of them and took all the antibiotics. But they made things doubly as tough really because the antibiotics would make you feel a bit unwell as well. And the intravenous antibiotics they put into the Hickman line itself were a little unpleasant. But I got to know the symptoms of them, the sort of increased pulse rate and the feeling a bit light-headed and unsteady on your feet, and got to be a little bit obsessed about checking my temperature, but I think a lot of people have that. 

So they kept the same Hickman line in all the time. They didn't change it?

They didn't change it. With hindsight I think it should have been changed quite early on. They took it out before the last month of treatment. So I had two treatments through a vein in the arm. And it was when I had that that I was actually quite glad they'd kept the Hickman line in because one of the drugs is quite abrasive and can really burn and damage the veins it goes into. So the last two treatments were quite painful. But yeah, the whole Hickman line procedure is not that pleasant and I think they just wanted to minimise the surgery involved in putting the line in and taking it out.
 

And then I suddenly became quite poorly at home. Each night and day I had to take my temperature to make sure it didn't go over the, up to the 38 limit, and this particular night it did. And they had told me to ring up as soon as possible that your temperature was high and that they'd decide whether I needed to go in, which I did. And when I got in there of course I'd got MRSA, so that was absolutely horrendous, it really was, and I was very, very poorly. I was on ten days of antibiotics on drip-wise, and I really was poorly, there was no doubt about it, I think they were worried, the family were worried and, you know, with the two together with having the chemo as well it just, it knocked me about quite a lot. 

Very tired, very out of it all really and in one sense I suppose, and but I just lay there, I coped with it I suppose. I just spoke to, because I had the MRSA of course I had to go into a side ward isolated away from everyone else, and after that, because I'd had MRSA I had to go in this ward every time I went in, which was great because it had its own television, it had a phone, it had a toilet and shower, so it was like being in a private home really, a private hospital. And then every time they needed me in I had to go in this ward. So overall I got over the MRSA eventually but, as I say, it was quite a nightmare at the time. 

Yes my bowel system really quite badly, you know, I was having to go to the toilet every five minutes, just gushed through me really. And sick, although I never was sick I was just, it just seemed to affect the oesophagus area and my nervous system here really, I think because it affects the oesophagus and if you get any problems just below the oesophagus is your nervous point I think, and that used to, really affected me that way. It made me feel sick but I didn't, I wasn't sick I just heaved and heaved and heaved, and I wasn't really bringing anything up but it was the motions were there. But I got to a stage that I wasn't sure how I was going to control myself, if you will, my bowel system, so I asked them to give me some padding to make sure that I didn't soil anything really because I wasn't quick enough sometimes to get out of, into the commode because I was so poorly. 

But that did, all the way through it seems to have been that part of my system that's been affected, so again I've accepted it as being the weakest part of my body, that that's why it affected me there. Now how other people are affected I really don't know, and how I got it I don't know, you know, it's obviously a germ that they're very, very, very, making sure that you're washing your hands all the time, and of course they do and then they give you this sort of stuff [alcohol-based hand cleaner], the extra, which of course I've always been very careful on that basis anyway. But of course when it's in your bowels it's a bit difficult, it's a sensitive situation that, you know, whether that's the way I caught it from that I don't know, I just don't know where it came from. 

And then I don't think the hospitals would tell you there's anything that they've done wrong anywhere. But I wouldn't say they did, I mean the precautions were made all the time, they came in to see me with gloves on and, washing their hands all the time in front of me, so I know it was nothing deliberate happened. Just a bit of a shock when they told me it was MRSA, and at that stage I really didn't take, you see it advertised on television' 'Oh so and so has got this', but you don't take it seriously as such really until it happens. But I can't blame anybody for it, in any way, any form really, it's just one of those things. I mean I did ask about it and they said that you've actually got it in your system all the time and you could bring it in from outside, or you, because of the immunity system it’s gone wrong it’s obviously come out of my system. But it’s quite a nasty thing and it did take ten days of antibiotics to get rid of, but again as I say, we came through it. And they did think that I was quite poorly at that stage and they did keep an eye on me, I must admit they were there at my bedside most of the time, they went through until the antibiotics kicked in. It’s not a nice thing to get but, as I say, you come out of it at the end of the day. Again it’s par for the course isn’t it, one of those things.

I was off work for eleven months from September '99 to August 2000. In August 2000 I went back to work part-time. My employer was very good and sympathetic to my illness and they allowed me to work part-time and gradually build up to full-time working over a period of, I think it was, eighteen months. 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.

So tell me a bit about how the shingles made you ill, in what ways it made you ill?

The shingles itself didn't seem very bad, I just had a rash across my stomach and I felt very tired for about six weeks or so, and I think I was off work for about two months with the shingles, and I went back part-time again but it soon became clear that I wasn't able to resume full-time working.

You said you're still suffering the after effects, is that tiredness or anything else specific? 

Yes, yes the tiredness really.

The rash went presumably?

Yes.
 

I also had an awful lot of post treatment infections and those were chest and sinus infections, and I was just finding that the staff at the hospital were very concerned about it, every time I got an infection and a temperature they wanted me to go up to the hospital. And that was something that we didn't expect because we thought once we'd finished the treatment in April things would get better and better. And I was finding that I was going into hospital for an average of about one week in four or one week in five with an infection, and each time I was staying in for between four, five, six days having IV antibiotics to get back on top of it again. And this continued right through until my last hospital treatment, which was in October, so from April to October I had pretty much continual infections all the time in my chest and sinuses and was on a lot of big antibiotics. 

At this point the consultant realised that I had a problem with my immunoglobulins. Don't ask me to tell you all about immunoglobulins because you need an immunologist for that. But I was diagnosed with something called hypogammaglobulinaemia, which was I had very low amounts of two gamma-globulins and I was deficient in one of them, which meant that I had very little immunity to infections, particularly chest and sinus infections. And I was also having trouble with my chest so I was sent off in two directions' 1) to the immunologists, and 2) to the chest clinic. 

The chest clinic took a little while but eventually managed to diagnose me with something called bronchiectasis, which is a problem with some parts of my lungs where my bronchioles have become enlarged and they've not come back again because of all the chest infections that I've had last year. And I'm getting a lot of sort of mucus trapped in there and that's providing an ideal breeding ground for the infections. So I'm having that treated with various courses of antibiotics and physiotherapy, which they're hoping will get on top of it. 

And the immunologists are now investigating a line of thought which is that I may have a primary immune deficiency and I may have had the problem with my gamma-globulins to start with, and that may have given me a genetic tendency towards the lymphomas. 

I'm hoping to go back [to work] round about the end of April, beginning of May, which is when I'm hoping that my gamma-globulin therapy will have started to really take effect and I won't be getting all these infections all the time. So at the moment I just live constantly on antibiotics with infections in my chest and sinuses.

Are you still having those treatments?

Yes and'

How many more have you got of those?

That will carry on forever' 

Oh I see.

'unless I suddenly start making immunoglobulins, which they think is unlikely. So it will probably be one day every three weeks or one day every two weeks for the foreseeable future.

And that's an intravenous infusion?

Yes it takes me the best part of a day really. By the time I get up there at about 9 o'clock, I usually get away by about 2. But I haven't had a lot of them at the moment so I haven't really got the pattern properly organised. But I'm hoping that I'll be able to drop the kids off and get up there and be home in time to pick them up from school and nursery.