Lymphoma

And the way I best describe it I think it helps people that don't understand, is if you imagine a lawn, if you image your body is a lawn and the cancer cells are weeds, and the idea is that you use the chemotherapy as a weedkiller. And the ESHAP was a weedkiller and it killed some of the grass but hopefully most of the weeds. But of course you can't get rid of all the weed seeds but you do your best. So they cleanse it so that you've got it as weedless as possible and then when you have a stem cell transplant they give you a general purpose weed killer, they kill the entire lawn and then they re-seed it with as much good quality seed as they can, and hope that the amount of weed in there is very small and that they then manage it afterwards. So that was the plan, so the ESHAP was to prepare my lawn, remove as many of the weeds as they could so that you got the best quantity of grass seed ready for reseeding afterwards.
 

So probably I think it was January 2001, it was in 2000 that I was first diagnosed as being ill so it was January 2001 that I went to see the specialist in London, and it was from there all the next lot of treatment was spelled out to me, which basically was you have to go up to London, they show you how to inject yourself in your stomach, you have to inject I think it was for three or four days prior to going back to London to store your own stem cells. I didn't have a transplant from somebody else so I gave my own cells. 

So it was some time in the beginning of March I think, end of February, beginning of March we went up to London. They give you all the injections that you need, to show you how to do them and all of the vials, and you come home and you inject yourself in your stomach for I think it was three days, twice a day, it makes all of your stem cells really produce, really active so you can get a good harvest of your own stem cells. Back up to London and they harvest all of your stem cells, so basically they put you on a machine that can recycle all of your blood, I don't understand it but somebody will. And your blood cycles out of one arm and into this machine and back into another, and it collects stem cells and they then when you've collected enough, I think I was on there for about six hours, your stem cells are then frozen.
 

After my two lots of ESHAP I was down to have the stem cell harvest, and to that end I was injecting myself with GCSF growth factor to make my bone marrow produce extra red blood cells that were going to come out into my blood so that they could be harvested from my blood. That was fine, I got used to that, didn't have any problems with it. The actual process of harvesting the stem cells was quite peculiar, I won't go into lots of details about that, but that was enormously stressful because I hadn't realised until I was actually doing it that there was a possibility that they wouldn't get enough and that I wouldn't be able to have the high dose chemotherapy and the autograft because I might not have enough stem cells to put back. 

It took two days to get them out and at the end of the first day it looked as if they weren't going to have enough, and I had a really sleepless night of worrying to hell about would they get enough? But thank God something happened and overnight I produced a lot more and the next day they had a much more successful harvest. The staff up in the Blood Donation Unit at the hospital were wonderful and very kind and stayed behind late to do all sorts of tests to make the lab get the results so they could ring me that night and tell me that they'd got enough stem cells for the autograft, which was really really good and saved a hell of a lot of heartache about it. 
 

Something did go wrong at this stage unfortunately. I discovered when I went down to the city, where they actually do the apheresis as it's called, that the growth factor injections should have continued all the way through to and including when I was down in the city. And unfortunately they had stopped prior to that. So the harvest was a failure. 

They were quite upset at the hospital and I was quite upset too. But I think in my mind you have to accept that this was a very new procedure at the time, and I think there had just been a communication breakdown. And I have nothing but high regard for the people that were involved. The procedure had to then be repeated. And I think I'm right in saying in '97 around about August / September the actual harvest was planned. And they got some, but I had to go back more than a couple of times. And they really were sort of sweeping the floor to get a number of cells. The lowest moment was the night before the last attempt, when it was indicated that they didn't think it was going to be successful. I remember being extremely angry at being told that. And when the next morning I was told that the counts were OK I was over the moon, highly elated. 

The lady who was in charge of the apheresis unit had a great sense of humour, put you at your ease. And the whole process, which looked very scary when you read the documents, being connected up to the equivalent to a kidney dialysis machine for four hours at a time, and the description of some side effects etc, and possible this, possible that, all looked very scary. But in fact the reality was I was sitting there having my lunch and watching videos, one of which was 'Dumb and Dumber', and everyone in the whole room was having a hoot. In fact they brought people in to see me who were potential donors for their siblings, for example, to see that it wasn't such an awful thing. 

So it, from being something that was alien and scary, in actual fact that aspect of the process was relatively benign. And I have to say I enjoyed the people I met very much. They were very kindly, very humorous and kept somebody who's not particularly brave going through it all. 
 

So the two sessions of ESHAP happened with all the excitement, and then it was time to try and get my stem cells out. Because I am an only child and because I am of mixed race parentage there was never going to be a donor for me. The mixed race meant that Anthony Nolan [Trust] were never going to find anybody, and the only child meant there was no one in the family. So it was always talk about it being my own stem cells that were going to get put back in. 

But then we found that the problem with my lack, inability to regenerate blood starts kicking in so I had the old GCSF injections and we tried to prime me and build up, basically get huge amount of white blood cells going for them to be able to get some of them out. And it was all looking good on one day and then the day before we were due to actually go in and attach, hook me up to the machines, my counts, having been doing that, suddenly went ferdoink. And then some sort of argy bargy was going on. But anyway basically I ended up being hooked up to the machines anyway. 

I think things were felt to be getting desperate so I was hooked up to the machines and because there weren't many spare blood cells floating around, I hadn't really made a lot of stem cells, but there were one or two floating around, the nurses were trying to manually sort of adjust the level, there's something complicated goes on with the levels in the machines and basically if you've got enough going on in the band then they can just leave the machine to do it. But because of the band of collectable blood cells for me was about that thin I had a nurse jiggling it every thirty seconds. And it's a long process. So for the nurse to be desperately trying to extract what she could. And the machines are pretty grim to be hooked up to anyway, it's a sort of, it's painful, you can't move, all the rest of it. Anyway it didn't work, to cut a long story short it didn't work at all. 

So that was a worrying thing in itself. So anyway so back to another meeting with the medical staff. 

They never put your stem cells back in either?

Well they didn't take enough to. 

Right.

Basically they didn't have, they didn't manage to harvest enough to do that procedure, so they had to abandon, that was one of our blind alleys really, of what was expected to be, you know, this is what we do in these cases didn't quite work, so they had to do some rapid thinking on their feet and do a quick U turn and go somewhere else. 
 

So did your sister have to go through the same procedure to get hers out?

Yeah but it was much more difficult for her. She absolutely hates needles and she had to be sedated quite heavily to do it. And I was just sitting next to her holding her and holding her hand. But no she didn't enjoy that at all. And it was particularly painful having the growth factor for her. I suppose, and I don't know if this was a fact or not, but because I was having chemotherapy and my immune system was kicked back and the growth factor that they gave me to produce the cells in your bone marrow, to fight disease, because I was, if you like, depleted anyway when they were giving me the growth factor I was probably just producing an increased and probably more normal amount of cells. 

But for my sister who had a functioning immune system, to then have more blood cells, and disease-fighting cells being produced then she had a lot of bone pain. She felt like, she said she felt like her bones were bursting and so' I think the sort of history of people going in with the cork screw to take out bone marrow into your hip years ago, that was, she wasn't keen on that old regime that used to be there. And I said, 'Well it's not like that, we just take a bit of blood this time.' But the changes, which are the injection to give you the sort of growth of disease-fighting cells actually was very painful for her. She didn't, and you know, she was in real trouble with it in terms of felt sick and also because of the actual physical pain. So that poor girl went through it for me but I'm very grateful.

Is she your only sibling?

Yeah.

How did she feel about being volunteered as it were?

She was nervous but really keen to do it, nervous but very keen. She knew it was really one of my last opportunities so there was never any, from her point of view never any, anything really to consider, she was going to do it but she really was nervous about the process. But she was very, very brave.

So once they've taken her stem cells out on that machine does the bone pain stop quite quickly, I mean how long does that growth factor stuff stay in your blood stream?

It took her, I think it took her a couple of weeks actually to stop, she'd stopped the injections to promote the growth of the cells but just the day before, I can't remember how many injections she had but the, I think it took a couple of weeks actually, and actually all told it was probably about a month before she started feeling OK, properly OK. So yeah.
 

All of the treatments were intravenous. I had them through needles in the arm, but it wasn't, I didn't have a Hickman line until I started having the salvage, what they called salvage chemotherapy. What a horrendous name that is. I can remember them saying that' 'salvage chemotherapy'. I had salvage chemotherapy prior to having my stem cell autograft, and in fact also prior to my allogenic transplant as well. I remember this, what a horrendous name, it sounds like, you know, they're digging you out from somewhere, salvaging you, but it was very strong chemotherapy just prior to going into having my autografts and the idea was to sort of try and give you a fighting chance of having no disease there prior to having the transplant. 

Do you know why they chose to do the low intensity one that time?

Yes. The stem cell, because I'd had the stem cell autograft with the high dose chemotherapy, the BEAM, I was told that if I had gone for the normal allogenic transplant they would give, which I don't know if they would have still given me radiotherapy with it, but they were just talking about giving me the ordinary allogenic transplant with high dose chemotherapy again, they said that if I'd gone for the normal allogenic transplant then there was an eighty percent chance of mortality, of dying. And I thought, 'Crikey, that's not very good odds, eighty percent'. So they said there is this option to have this low intensity, it's relatively new, and basically what it relies on is the fact that they give you a little bit of chemotherapy to sort of cut back a bit of the disease, but they rely on the fact that the donor's bone marrow, when given to you in stem cell form, would engraft, and actually because they're a healthy person that fights disease off anyway, it would recognise in my system any alien components and fight it off, fight the cancer itself, and if there was anything there, and so it will actually use the new immune system to fight the disease. 

And that's the whole premise of, at least I believe, that's what I was told, and which seemed like a great idea, I thought, 'Fantastic'. And they said, 'There's a good survivability rate at the moment, we don't have much data on it,' they said 'because it's fairly new and we'd be studying you anyway to build data for future statistics.' But they said 'It's nothing like the sort of risk of having the full blown allogenic transplant of old.' This new one has worked great so far, touch wood.
 

And certainly when I had my stem cell transplant, I was in a room by myself and obviously you're supposed to be in isolation because you're neutropenic, but the toilet and washing facilities were the communal ones. And so I was saying, 'Well, you know, might I pick up an infection?' And they, 'Well we'll give you a spray.' So I had this spray that I was supposed to clean the loo with before I used it. And it was very fortunate that I didn't get a serious infection because it was no thanks to anything anybody did. You know, people would come in and out in their everyday clothes to clean, and although they used a different mop, some of the other cloths they'd used elsewhere, and it was very hotchpotch. I have to say, now in this hospital they have got a specific unit where patients are treated, and I would hope that perhaps the facilities are better than they were when I was there. I don't know, because fortunately I've never been in it. But yeah, so it wasn't great, but you just, again, you can't walk out so you just have to get on with it really.

Were your kids allowed to come in and see you while you were in isolation?

I think they would have been but I didn't want them to. I just felt I didn't want them to see me so unwell. And certainly of my two children one of them would have found it very difficult anyway just because she's quite squeamish. And so we decided that they wouldn't come. And I spoke to them on the telephone and they sent sort of cards and things, but it was my decision that I didn't want them to come. My husband used to come and visit me. I didn't really have, there were a couple of people that came to visit me who worked in the hospital and they popped in, but other friends would ring the ward and ask, you know, did I want to see them? And actually most of the time I said no because I just felt so ill, and certainly didn't look very pretty. I just didn't have the energy to talk to them really. And also I didn't want to pick up any germs because I found that no matter what I said to friends, friends would come and would sit and say, 'Oh, I've got a bit of a sore throat so I'll just sit over here so that I don't infect you.' And I'd be thinking, 'Well actually I don't think you should have come to see me actually.' But it's very difficult. You can't say, 'Well. Go.' So yeah.

How often did your husband come in to see you during that time?

He came every day. Yeah. Every day. Just to sit there really, half the time. I didn't really have anything to say because I hadn't done anything. So sometimes I wasn't very sociable, most of the time probably. But he would just sort of tell me what had gone on and try and keep me in touch with things. Not that I really cared too much at that time.

Hmm.

I wasn't a terribly good patient I have to say, as a stem cell', with my transplant, just because I just felt so unwell really. So weak and that.
 

How long were you in hospital at that time?

About, I can't say exactly, it was about ten weeks.

Really?

That particular one there.

And how often was your wife able to visit?

At the very least it was, at times it was almost every day for various stages, but she was also working, she was working as well. But her work had been very helpful to give her time off, but also our daughter, she was looking after our daughter. We live on the south coast of England, and family are up near the hospitals and that's quite a bit distance to travel. So it was awkward with regard to sort of child care and... But she was seeing me at least two or three times a week at the very least, and sometimes, like I said, she was there every day. So depending on how ill or how much I needed that help. 

And your daughter, did she come and visit you?

Yeah just a few times. I think what we tried to do, because, particularly in the early stages, I saw more of her in the early stages, later when I was prone to infection, not so much because it was just the fewer people that I saw the least chance of catching a bug really. But that was fine, it was good, it was actually quite good to see her just occasionally because at times when I was particularly low, my wife was very clever actually, she, when she knew I was particularly low during all stages of my treatment she'd just bring my daughter along. And I remember the different stages she would just let her run into the room first just a few seconds before, you know, a handful of seconds before she came through, and when I was feeling like, at times when I was thinking, 'Crikey I don't want to carry on with this treatment', she would, my little girl would come through, a little beaming smile, not a care in the world, fantastic, came straight through the door and I was just saying, 'Keep giving it', in my mind I just kept deciding, 'Just keep giving me the drugs, it's only a bit of unpleasantness, just keep coming, if it fixes me, great'.
 

The mental side of being in hospital was as bad, if not worse, than the physical side. I was in a room with two people to start with and I guess when you're feeling ill you'd rather be in your own room, and it was only after three or four days I was put in my own room. But just the mental side I guess of being in the same room day in, day out, not feeling well, being away from home. And if you're in hospital where you don't live, if you're in hospital where you live people can pop in and see you for ten minutes. If you're in hospital where it's going to take two or three hours to get there, people can't come and see you on the, and then be told, 'He's not well enough to see you, doesn't want to see you', it just doesn't really work. So it was quite, I found it quite difficult mentally as much as physically. 

You can go out, different hospitals have different ideas, some keep you in isolation the whole time, this hospital lets you go out, you can go out for a walk if you're well enough. I could manage sort of ten minutes just to sit outside in the fresh air but most of the time you're in your room and, mentally it was, yeah, it probably was as bad as the physical side. 

I was absolutely determined to get out as soon as possible, I did everything I could to influence them to let me get home as soon as possible and I went home after, I think I was in hospital for twenty-three nights, which was the quickest at that time, equal quickest that anyone had ever been out, because they told me when I went in it would be less, no less than four weeks and I did it in three-and-a-half weeks. And it was one of the happiest days of my life the day I walked out of that hospital because after three-and-a-half weeks it just, I don't know, everyone is different, but it really did sort of grind you down. 

And apart from perhaps the days when you're really ill, I can't remember exactly, but basically the mental side is just, you're in a very small room, there's no carpet on the floor, it's just like a lino, you're in a hospital bed which isn't necessarily particularly comfortable. I was quite lucky I had quite a new bed but not everyone was. You've got your own, if you're in your own room you've got your own little bathroom area but it's all hard, there's just nothing soft about it, and I think the difference then I guess, I don't know if it's because I'd been in private hospital before for my treatments, even though I've not stayed in very often. The curtains were just stretched to the ends and the furniture is old and I don't know what it is, there's just nothing nice about it, and that may sound, I don't want it to sound as if I'm ungrateful about the', because the treatment that I had was fantastic, but just I think it just wears you down really if there's no comforts at all. 

And being in there was, it's very hard to put it into words but gradually just, I think it's just the effect of you only see your family, which is nice, but again you only see them for a couple of hours a day probably because they've got to travel up and then they spend a bit of time and then they've got to go home again. 

You said you were sharing the room with two other people?

One other person to start with.

Right.

The first night it was a little bay of four but basically I was with someone else for the first week and I guess I don't think many of us want to share a room with a stranger. I mean they become not strangers after a while because they're in hospital with you but basically someone you don't know. And they're perhaps being ill, you may be being ill, and there's just a curtain that you can pull between the two of you if you want to, but it, yeah it wasn’t, again I don’t think anyone wants to be in hospital anyway. But it was better to have your own room but it still after, you know, I was on quite a high when I got my own room, four or five days I’ve been in I think and I didn’t have, and I was very, very happy to get my own room. Don’t get me wrong, it was really nice to have your own room and I’d always want to have, be on your own, but I think it’s just perhaps you’ve been in that hospital for sort of three weeks and you’re just determined to get home as quickly as possible. It’s hard to describe but certainly mentally for me it was just this determination to get home every day. And I think also that every day in normal life goes by, I don’t know like a flash or a spark or whatever, but every day it goes by, if you’re busy it just goes by, it seems in no time at all. Every day in that hospital because you’ve got nothing to do, you can have a read, you could go for a walk as far as you physically were able to, but every day just, just seemed like a week or a month even, almost like a month I’d say it was that, that’s the impact it had on me. Probably not the first few days but after you’ve been in there it really, it just, the clock never seemed to move, which is totally different than normal. Did you have television, newspapers? Yes I had a TV in there and a video all in one combined, but I don’t know, I guess we all get too used to our home comforts and stuff. You know if you had Sky TV in there you might feel a bit different I guess, a hundred channels to choose from but I think it’s just that you’re not feeling well, you’re in an environment that’s, you know, compared with lots of places you could be in the world is probably fantastic but you just, it’s what you’re used to isn’t it, it’s all relative I think. And you’re away from home and I guess for some people, it wasn’t for me but I also think for some people perhaps they’re still worried about whether they’re going to get better or not. I’d got my ahead around it by then that I was definitely going to get better. I had a shower every day, some people were just in their pyjamas and their dressing gown and never seemed to get dressed, and I think that doesn’t help them. It certainly helped me to get dressed every day at least and to just try and do something, go for a little, even if it’s just, you can’t, most days I was perfectly able to go for a ten, fifteen minute walk and I couldn’t go in the lift, it made me feel sick, and I was two floors up, so I had to go up and down the stairs which was a, probably about a five to ten minute exercise that would normally be a one minute exercise. Certainly coming back up anyway, going down that’s probably an exaggeration, it’s probably five minutes to go up and down the stairs instead of one minute. But I tried to go for a walk every day and, as I say, that’s why I think the mental side was worse because looking back physically, although some days I was quite ill and being sick and things like that, I’d always try and manage to go and sit outside for a while in the courtyard or go for a walk around the hospital, outside the hospital for just ten minutes. But that was probably all, some days probably about all you could do.

After my three-and-a-half weeks I really did not want to go home, I felt so weak I was practically on my knees begging the staff to keep me. But they said, 'Look you're going to feel like this for a long time, you've got to get a way of coping, being back at home again. We want to get you out of the hospital, the sooner you get out the sooner you're going to start your recovery.' So I gritted my teeth and came home. That was probably the hardest part of all in some ways because I was so exhausted and tired that I could hardly move, and some days I would just lie in bed all day, sometimes I'd manage to crawl down onto the sofa for a bit. 

We'd got to the bit about post stem cell transplant. That was very hard because I was so exhausted all the time and I expected to come home and to get better quite quickly, and I sort of thought, 'Oh April', I thought, 'Well by July I'll be feeling a lot better', and I thought, 'Oh maybe I'll just have the summer and then I'll go back to work in the autumn', and I was thinking, 'Maybe I'll go back to work in September', and then I thought, 'Maybe I'll go back to work in November'. And I just carried on being exhausted all the time.