One of the main differences actually was that with ABVD all of my drugs, all of my chemotherapy drugs were given in hospital. So I went in for a day every fortnight and had them all intravenously. With ChlVPP I went in to hospital in a cycle. I went into hospital twice, in a 28-day cycle I went into hospital on Day 1 and Day 8 for intravenous drugs, but for days 1 to 14 I was taking drugs orally at home. So the vast majority of my treatment was at home, which’ One of the hardest things about having chemotherapy is hanging around for it, waiting for it, sitting in hospitals for hours on end waiting for the pharmacy to make up the drugs. And it’s absolutely fantastic being able to just take the drugs at home. That made a massive difference to the way that I felt able to cope with the treatment.

So although it was quite hard work, again I found that over a period of months, I had three cycles of ChlVPP over three 28-day cycles, so three months. And it was, again it was cumulative. So by the end of the treatment I was thinking, ‘I really don’t think I can have any more of these drugs’, and I was exhausted again. Less nausea, I was very sick the first time round and I was very sick on the first cycle of ChlVPP, but then the anti-sickness drugs completely sorted that and I didn’t have any sickness after that. I was exhausted and I felt just generally under the weather. I described it to a friend like feeling like I was being poisoned, which I suppose in a way I was being, you know, the drugs are very toxic. So I just felt generally unwell but it was actually far more manageable than I found ABVD.

But it was actually very liberating taking tablets at home, which happened with ChlVPP. And yeah that was actually, that was much better, although it’s a vast number of tablets to take. I was taking I think 13 in one go, which is boring but I would far sooner take 13 tablets than sit in a hospital waiting room for four hours or whatever waiting for the pharmacy to make the drugs up. So that was good.

So following more sort of scans and things like that I started on a course of a chemotherapy which was called CHOP, and that consisted of, well the first treatment, it was 6 treatments, but the first treatment I had to go into hospital overnight to have that treatment because they weren’t sure how I would respond to the treatment and I think my kidneys could have been at risk, and so they said that they would rather watch me, which was fine. I can remember that was July because Wimbledon was on. All the, I suppose the whole procedure had started in March. So an amount of time had sort of gone by. But I went in on a beautiful sunny day for my treatment and that just consisted of me having a needle put into my hand and then the treatment was administered fairly quickly. And it was absolutely fine. I remember walking around and talking to people in the ward and feeling fine really. So that was good.

So started the chemotherapy in a day room, just sat there and I was in for the day and the various drugs were put in and it was all explained to me very well before I started so it was, you know, the recovery rate was very good and everything. So we went in knowing what was happening and feeling quite positive about it. The first few lots of chemotherapy it was, the chemotherapy was every two weeks, it was initially they said six cycles, one cycle of chemotherapy was actually two lots of chemo in each cycle at two week intervals. So it was a month for a cycle with two lots of chemotherapy.

Do you remember the name of the chemotherapy you were given?

The chemotherapy was ABVD, which is, theres a pink one, they put the needle into your arm, (a cannula is it?) a cannula into your arm, then there are four drugs the A, the B, the V and the D, I can’t remember what they’re all called. Two of them are put in from quite large syringes, you’ve got the saline going in and at the same time they put a syringe into the line and inject this. They also inject you with an anti sickness drug and I think a steroid is injected as well. Then the other two drugs, they’re also on a drip and what they do is you have the saline going in and the drip with chemotherapy. I would go into the hospital at about 9.30, 10 oclock and I would leave by about 3 to 4 oclock, so it was a day sitting in an arm chair in a day room having the chemotherapy administered.

We carried on, after three months of chemotherapy we had a halfway scan and everything was going well, it was, the lumps were all going down, there were, all of the lumps were believed to have been above my diaphragm, I was Stage 2 Hodgkin’s disease. I had two lumps under my left arm, two under my collar bone, two in my neck and several in a sort of cluster under my sternum. The largest lumps were in this area and they were regressing at a pace that the doctors were all very happy with. I carried on with chemotherapy, got to the end of the six cycles, which we were hoping was going to be the end of it.

I then had another scan after which we were told that no, there were still some lumps present, so wed have to have a further two cycles of chemotherapy, which was, that was a shock, although we knew it was possible we really hoped that that would be the end of it, and so it was quite depressing to be told that you have to go and have further treatment. That was almost harder than the initial diagnosis because you think you’ve done it but then you’re told, ‘Oh no, theres going to be more. And so we were told that that would happen. We were also told that there was a limit to how much chemotherapy you could have and that once you’ve had the eight cycles that would be it, you know, there was a possibility that I could have radiotherapy or start something else then, but that should be the end of it.

So we carried on, there was a one month break whilst the scan took place and everything, and I did actually start to feel better after even just after a month off the chemotherapy, and then back in for another two cycles. So we had another two months of chemotherapy, which wasn’t, the first cycle probably wasn’t as bad as the latter ones of the six months because I’ve had this bit of a break, but then, again, as it sort of built up inside me it really started to knock me for six again.

Anyway I went in and I had the first batch of treatment which basically meant you sat there for well anything from two to five hours waiting for this stuff to drip in your arm. Got home, felt OK for the first couple of days and then it hit you, and basically it was fludarabine and it was destroying quite a lot of me. And as you went on your blood had to recover, and when your blood had recovered, usually about a month, you could then have another treatment. And you went back in again and for a week you walked around with this needle stuck in your arm, and to those of you who are hairy-armed, as I am, shave them before you go in because these little sticky pads that they have move around on the hairs and if you don’t have bare arms believe you me it’s painful. And don’t have them put in the hand because you bend your hand too much, the arm is the only place, it’s straight and you cant muck it up. Trouble is they do have a propensity not to be able to find a vein, but that’s another story.

I insisted that they went, where possible, they went into my arm, between my elbow and my wrist so that the needle was actually into a part of my body which didnt bend. I mean what they like to do is put it in the back of the hand because the veins are nice and easy to see, but the hand bends which, although the needle is soft plastic, it still tends to irritate. Youve got it in there for a week, it still tends to irritate and pull out, which means theyve then got to go and find it or do it back again, and you’re left at home with a needle hanging out or youve got to take it out and stop it yourself without the supervision. Whereas if they put it in the arm which has been shaved, the arm stays still and having no hairs on it the whole thing grips and youve got no problem. you’re also slightly less likely to knock it because, as I say, this thing is in there from Monday morning through till, well, Friday afternoon.

The procedure took about an hour to put in. They make a small incision in your collarbone, by your collarbone and they thread the plastic tube down into the vein. And then it comes out in your chest and then you have a long tube with two little attachments on it.

Well do they do that under a general anaesthetic?

No that’s all done under local anaesthetic, which is a very strange sensation, people pushing and pulling things into your chest and out of your chest.

You can see it but you can’t feel anything?

Yeah, you can just feel a little bit of pulling and tugging. But no, you can feel a little bit of warmth because you can feel sort of blood trickling out, which I guess is normal but a little bit alarming. Oh yeah it wasn’t one of the most pleasant experiences.

And what was it like taking it out?

Taking it out was much, much quicker, was about twenty minutes. So a lot of pulling, the doctor looking very strange and trying to pull this thing out of your chest, a bit of a weird experience.

Presumably you’ve just got a tiny little scar from the Hickman line?

Yeah a couple of little scars’ the one where they put it in; the one where the tube comes out of your chest, which is quite a prominent scar but I guess it doesn’t really bother you; and then the little nick that they make to release all the skin that grows around the tube inside. Yeah.

And you had the chemotherapy in your spine at the same time as you were having the CHOP, is that right or did they alternate it?

I did at that stage yes. Yes, in fact I had the spinal one first one day and then the first chemo the second day. And then there was a gap of about a month or so in between giving me more spinal chemos after that. But I had six in all over a period of six, seven, eight months. But they did those in, well it depended, sometimes I was actually in having the other chemo in hospital and sometimes I went to out-patients and had it done.

What was it like having the chemotherapy injected into your spine, was that gruesome at all?

It’s a bit nerve-racking I think, you just, all you do really is just lean over, bend over onto a table with a pillow on and they just freeze it and then you can actually feel the needle going in but it doesn’t hurt, it’s just a, just for a few minutes, and then they put some more anti-, inject it to freeze it again, and then it’s just a sensation really and the pressure of pushing the needle into the spine. But it doesn’t last very long, it’s only ten minutes at the most, and you have to lie down for an hour on your back afterwards in case you get headaches, apparently that was the reason, just to lie quietly for an hour after the injection. And then just get up and go about as normal.

It doesn’t really give you any after-effects from it, it’s just the thought of it I think really that’s a bit frightening but you get used to it, after that many you get used to it each time really. It’s just a ten minute thing really, it doesn’t take long, it doesn’t hurt, just the pressure of, and they’re asking you all the time, ‘Is it hurting you? Because well give you some more, freeze it a bit more but, and talking to you, asking you if you’re all right, you know, keeping you quite stable in that respect. But no it’s not a big problem. I mean it’s over and done within a few minutes.

I think they have to be very careful they don’t touch anything themselves, I think they’re the ones that have got the, whether they’ve had any mishaps I don’t know, but there is a certain place they had to put the needle in the right place otherwise they could’ve caused some trouble. But I was fortunate that those came out negative each time they did it so it hadn’t reached my spine.

The nurses who administer the chemotherapy, I tend to refer to them as Macmillan nurses because I think some of them are, some of them may not be, but they just work within that area. The whole experience of having chemotherapy, at least in my hospital, is made as stress-free and as pleasant as possible. The nurses are not in uniform, they’re just dressed in their civvies, if you like. The treatment suite has a set of very comfortable recliner chairs so that most patients get their treatment sitting in a recliner and you can put your feet up if you wish. Theres generally music playing, you’re brought tea and biscuits if you need it, if you’re there for the day sandwiches will be provided at lunchtime. So, and they also take care to explain, you know, if one started to feel a bit hot or a bit uncomfortable they would explain, ‘Yeah that will pass, don’t worry. But they keep an eye on you. Very friendly people.