Lymphoma

They took the biopsy and lo and behold it was the Hodgkin's disease again, which was quite a shock to everybody. Again they did lots of tests, at this point they were able to do more scans and things, and again it didn't seem to have spread anywhere except it had obviously gone, somehow it had got from my groin up into my neck. At that point I was utterly convinced that I was going to have chemotherapy and that I would be made infertile, because at that point I was thinking about having children, I'd just met my husband, we were very happy, we were thinking about our future together and we definitely knew we wanted to have children. And that was the thing, I must say, that was uppermost in my mind was, was I going to have chemotherapy? Was it going to make me infertile? And I've since talked to lots of people who've said, 'Well you could've had chemotherapy and it may well not have made you infertile', but at that time that was what I was worried about. 

As it turned out by the time I got to see the specialists they said, 'No we'll treat it with radiotherapy again'.
 

But also at that time I think possibly the worst experience for me was when I was told I would have to go and give sperm, basically to protect, because the chemotherapy can affect your sperm count and'

Fertility?

Yes, it can affect your fertility in later years and he kind of explained all the issues around it but it happened so quickly. I mean I think it was at the first appointment with him when he was going through the treatments and going through the scans I was going to have to have. He kind of said, 'Oh and we'll have to sort out your sperm as well, I'm presuming you want to keep it safe.' And I said, 'Of course, of course', you know, you can't think that far ahead at that time, you just have to kind of bank it for the future and take it from there. And literally he was on the phone to another hospital organising for me to go and visit them straight after that appointment and basically go and give sperm to kind of have it stored and sorted out, basically, so it would be there after all the treatment and I could use it if ever I needed it. 

So I just found the immediacy of that quite harsh and I wasn't really, you know, I'd already taken on board a lot that day of what to expect, and I guess for me it was particularly worse because I'd led such a closed life up to that. I wasn't really expecting all of that information, and so then to go straight on to this kind of other hospital and have to give sperm in this' it wasn't the nicest of environments really. I thought that could have been, that was the major area which could have been improved the most. I just wasn't prepared for it and it was quite a bizarre feeling kind of in this room, locked away in this room, and you could kind of hear other people outside in the corridor talking about their mundane days, and you're kind of stuck in this little cubicle and it's just not a very pleasant feeling, and obviously you don't expect the Ritz or anything like that but just a little bit more privacy and getting used to explanation of what was happening would have been a bit nicer as to what to expect. So I guess the harsh realities of what was going on was quite bizarre that day. And that day really did get me down quite a lot and it kind of, it didn't really affect me too much, I was a fairly positive person so I tried to just blank it out, basically, get on with it really, which I did. But the thought of having to go back a further two times to this facility to store my sperm just filled me with dread at the time but, again, thinking of it, thinking for the future like you have to basically, you just have to get on with it and go through these stages.

What do you think could be improved in these places?

What do I think they could have or I could have?

Yeah, oh it could be improved in general, I mean communication, information?

Oh, yeah, I think the way it was done, I think I could have been a) I could have been given a bit more time to digest all the information about treatments and what was going to have to happen from here before I had to do' rather than go straight on from that first appointment to another hospital and do it straight away. I could have been given a bit more time to think about what was going on and then also been given a bit more information as to what to expect when I got there. I mean, you know, it's a public hospital so you're not going to expect great facilities but I think just the fact that you could hear other people around you laughing and joking whilst you've got all this going on in your head and you don't really know what's going on. It's really difficult to comprehend it really I think. The way you could have just been put into a bit of a nice environment. The rooms themselves were a bit dank and miserable and the facilities were, it’s kind of, you know, you see this kind of paper roller stretched over a chair and you just think, “Oh, it’s not nice at all”. So just the general environment could have been improved and what you’re offered on the day, you know, maybe to come back another day and take a look, maybe have a look and go through what was expected of you and say, “This is what we’ll do and this is how we’ll store it”, and just shown what to be expected. Because I think it was literally that, that I didn’t expect it. I mean it was…, the second and third times I had to go they obviously weren’t so bad because I knew what was going to happen and you just kind of think, “Oh OK”, grin and bear it, get through it and that’s it, done. It was just the initial shock that first time, you didn’t really know what was happening. It was pretty depressing really and, like I say, that was the worst point of that time and I was kind of seriously thinking, “Oh God, what have I got myself into?”

And was there ever any problem with fertility from all the treatment that you had, because you've gone on and fathered another child I think?

Oh right yes, of course, that was a major side effect. No I became sterile as a result of the chemotherapy so I cannot father children. What did happen though was that I was offered the ability to place my sperm in a sperm bank, which I did, and that's been there for the last fifteen years, and it was literally six months ago they wrote to me asking me whether I wanted to let this go now. So for the last fifteen years I could have used artificial insemination if I wanted more children. I've remarried but my daughter, it was my wife's before we got married, and she was three at the time, so I've since formally adopted her and now she's my daughter. But no I couldn't have had children naturally but through the last fifteen years if I'd wanted to I could have tried for artificial insemination. And this was offered, I didn't have to ask for it, and it was nice to know it was always there if necessary.

So they were offering that as long ago as'?

1990, yeah.

Yeah, good.

Yeah, and they say they normally hold it for ten years. But they held mine for fifteen. In fact I've moved house maybe ten times in those fifteen years and lived abroad for seven years and how they found me I've no idea, but they wrote to me recently asking me whether I wanted to let it go, and I let it go at the time. But I was very pleased to know that was available and it was always there.

Can you, just for the benefit of anybody else who might want to know, tell me what that involves?

Sperm storage involves giving a sperm sample, which is normally done, you know, privately into a container, just like giving a urine sample. They then take that and then they freeze it in liquid nitrogen at minus however many hundred degrees they do, which means it keeps for as many years as they wish to keep it, and then when they, if you ever wish to use that for artificial insemination purposes for instance, they defrost, if you will, or unfreeze, a portion of that and then they use that. And depending on how much they allow you to freeze would determine how many times you could go through the process. But it's quick, it's a very quick process. You go in, you give a sample, they take it away and then that's it, it's as simple as that really. They store it the same day I think.
 

Yes, so you said before you embarked on the high dose chemotherapy, I think, for the first transplant that you were offered sperm storage, and you did that in case it knocked your fertility?

No, the start of all the treatment in August 2000, I'

Oh OK, before the CHOP it was?

Yes, before I had any treatment I went to do that, that's when I did that, yes.

OK so do you know, have you been told for a fact that your fertility has been damaged?

Yes we went back, I've been back since, you know, and I'm, yeah, firing blanks.

Have you put it to the test?

Yeah I went back to the hospital and they took a sample and basically checked, and yeah I'm not functioning in that area.

How does than make you feel?

It actually doesn't bother me because I knew it was, in fact I kind of expected it because I thought, 'Well I've had a lot of chemotherapy', I had probably a year's worth of all the different packages of chemotherapy and then the two transplants, so I would have been really surprised actually if I'd been working. And I thought, 'I'm OK', because I managed to do something about it before I had the treatment. If I hadn't had that then yeah I'd be, right now I'd be absolutely devastated because we always planned having a bigger family. But our little girl is a blessing because we had her, and then this problem came along. But we're now looking at sort of broadening the family. 

You say they'll give you some fertility treatment?

Yes.

What does that involve?

I think it's called, it's not IVF it's IUF, I think, intra uterine fertilisation I think it is, I think that's what it's called. So it's a case of using my sperm and my wife who functions normally, and that's it. So it's relatively simplistic because we're not a, if you like, a family with a history of fertility problems, so that's hopefully that's where we'll be at really. And it's not such a sort of painful and uncertain process as much as it could be.
 

And in fact when I was first diagnosed I was offered the opportunity to egg harvest.

Really?

Yeah. And I discussed that with my husband and we turned it down because we decided that unless I had been in remission for at least five years we wouldn't want to have another child anyway. We would feel that that was unfair given that we felt slightly insecure about my longer term health. And so, yeah, there is a real kind of weight of anxiety and guilt that comes with having a child and being seriously ill.

Does that mean that the treatment you've had has probably had an effect on your fertility?

Yeah I think it probably has although it's difficult to say because I come from a family with a medical history of early menopause. So I am not, I don't know how much of my fertility would have been impacted by that. But certainly I, well actually I did, after the first, after the ABVD I did go back to having relatively normal periods but I haven't had one for months and months and months now, so... I imagine it has been impacted but we've taken the decision to stop at one child anyway.

Did they tell you though that it might affect your fertility?

Yeah. Yeah on both occasions they told me that it might affect my fertility, and actually that, for me that was something which did not cause me a great deal of pain or, you know, emotional pain. We're very lucky. We have a very bright and wonderful little girl and she's more than enough. 
 

You said earlier that you spent time considering whether you should do anything about preserving your fertility. What did you decide?

In the end we decided not to do anything. I think that was the hardest thing. There seems to be so little support and advice out there for people. It took four weeks for an appointment to come through to talk to somebody, and then she was talking about really needing a lot more time than we had to actually ensure that a large enough group of embryos could be created and stored. And from the financial side as well that was quite a worry because it is an expensive treatment. And although there is help available on the NHS for people in my situation, it was taking such a long time for the local NHS Trust to make a decision whether they would help with the funding, time wasn't on our side from that side of things. 

Did you have any medical insurance?

No.

So you would have had to have paid?

Mmmm.

What sort of sum are we talking about?

I think we were talking sort of three thousand, and when you're not expecting to have to suddenly lose that much money then that's quite a shock. I had issues with the whole process as well. I didn't necessarily agree with it ethically. But again I'd had so little time with staff in the fertility clinic to talk about these issues I felt I couldn't put all those fears out of my mind and worries out of my mind. So in the end we decided to just take our chances and see what would happen. The thing with the ABVD chemo is there is no certainty that it will damage your fertility, so the chances are quite good that everything will go on as normal in the future. I felt I just had to take those chances.

What were the ethical things you were worried about?

I think at that time there'd been a lot in the press about storage of embryos and unused embryos and how they were being used for research without authorisation. And I can't quite remember all of the things that were going through my mind at the time but I know that there were a number of issues that I wasn't totally happy with. I just felt with everything else that we were going to have to go through I couldn't put myself through weeks of very intrusive extra treatment when I had to get to grips with the Hodgkin's and the chemo that was about to happen as well. And I still think that for me I made the right decision in not doing anything.

What would they have done?

They would have harvested eggs from myself and used sperm from my partner and created embryos which they would have frozen. One of the silly things was that the local NHS Trust would pay for freezing the embryos for a year, which is slightly silly in my mind because doctors tell you with, had I been having treatment for nearly a year, the doctors tell you not to try to conceive for at least two years afterwards. So, and that seemed slightly pointless, and then that would have meant even more money because we would have had to pay for the extra couple of years storage. And I think the financial concern on that was quite big as well. So obviously you've got concerns financially about' how you're going to manage if you're not going to be working; how long you might be off work for; transport costs to and from hospitals. It all adds up really.
 

They'd taken my spleen away by that point so I didn't have a spleen any more, but they decided that what they would do would be to treat me with a course of radiotherapy to the area just to make sure that nothing was going to recur. And they were suggesting something called an inverted Y radiotherapy, which was going to cover both my groins and sort of up my stomach, although they hadn't found any signs of the disease in my stomach at all. 

At this point I was told, 'Oh well you do know that this treatment is going to make you sterile', because the radiotherapy would have covered my ovaries. And I was not happy about that at all, being only nineteen , so we went back to the hospital and asked them if there was anything they could do about it. And they agreed, after quite a lot of haggling, to perform an operation called an ovarian swing where they cut me across my bikini line and they took my ovaries and they moved them and actually stapled them onto my uterus, one on the front and one on the back with kind of metal staples. 

The next things that happened, which may or may not be of interest to anybody, was having children, which was, I was very lucky in the fact that I got pregnant quite easily. Having had all this I was told that it was very likely that I was going to have problems getting pregnant. I didn't have any problems getting pregnant at all, it took me about four months. What I did have was a huge amount of problems in the pregnancy because of having had this operation to move my ovaries. So ironically the operation which had saved my fertility actually made my pregnancy pretty horrendous because my ovaries and ovarian tubes were being yanked and pulled in all directions as the baby grew. And I was kind of immobilised by about twenty weeks, by about half way through my pregnancy I could hardly walk at all. But I got through it, I managed to find some techniques for coping with that which were non-drug based, and I was doing relaxation exercises and visualisation exercises, which in the end carried me right through my pregnancy and the birth, which was helpful. And my son came along, which was great. 

Didn't think any more about the lymphomas again, decided we wanted to have a second child, and got pregnant again. Had another slightly less traumatic pregnancy, used all the techniques again. And at least by this time we knew what it was that was causing all the problems, because the first time around my operation notes were lost in the mists of the bowels of the hospital. By the time the second pregnancy happened we knew what to expect so we could cope with it, although we did have a sort of three-year-old running around as well, which was quite hard work. 
 

Did the ABVD have any impact on your fertility do you know?

No not at, because I had in the, I'd finished chemotherapy in the November, and in the March I got pregnant accidentally, I was on the mini pill. And as soon as I found out, I'd had a CAT scan late February, and I knew that the pregnancy would be severely affected, the child would be affected. And I went to the doctor, my doctor, and I was completely beside myself, completely, and he was brilliant and he said, 'No, I'll get that sorted.' And he gave me an appointment to go and I had a miscarriage three days later, which I was, you know, I was so glad it happened that way and I found, so' But that made me realise'

So you didn't have a termination as such?

No I didn't have to go through that, that was good. But I did find that then that made me also realise that I didn't want any more children, I had two children and I didn't want a third. And after what I'd gone through I didn't want any more children, it was enough just coping with myself. So no, it didn't affect my fertility although they said it could do, but it didn't, no I was lucky.
 

And as it turned out, afterwards I went to university and then I started going out with someone about a year or so later and got pregnant. But they had said to me, 'We don't think you should get pregnant within a year or three years of having treatment because of the chemotherapy and the effect it can have.' So I had an abortion, which I may well have done anyway, I don't know, but it was a good reason. And it wasn't, I sort of felt like that, you know, well at least now I can have kids, and also I don't have to, because it was quite, I was still young then, I was in the middle of my degree and I don't know really if I was, I don't know, prepared. And I don't have a problem with abortion so to me it was quite a straightforward decision. 

So in that way I was lucky, although I kind of sometimes think, 'Well what if I then am diagnosed with something else or it comes back and I could have had a kid and then I didn't?' You know, that does go through my head because I don't have them now and I would like to have them, so I mean that's more to do with, I don't know, finding someone nice to have them with. But it's, because I know that I can get pregnant it's not a worry, well until for other reasons if I don't have them as I get older. But it would have been, I think, if I didn't know that, I think I would be very worried. But yes that's that bit.