Lymphoma

When I first started treatment I had a bucket near me in the living room and took one upstairs to bed for two or three nights expecting to be sick. It never happened, I didn't have any feeling of nausea or sickness and I haven't since. And I feel I can't tell enough people this good news because so many people express surprise and astonishment that I haven't had any nausea or sickness. 

You said you never had any nausea from this treatment?

No.

Did they give you anti-sickness drugs to take?

Oh yes.

And you're taking those?

I only take them for about five days after the chemotherapy session, that's all. So when I come home after chemotherapy session I have about four or five tablets which I take, but that's only that many tablets for about the first five days. After that I'm down to one tablet three times a day.
 

The other side effect you've mentioned, I think you had with all of your treatments, was nausea?

Mm.

Did you have anti-sickness tablets each time?

Yes, each time pre-chemotherapy, sometimes they're a tablet, sometimes they're an injection. And they were very good. I think with the very first regime of chemo, the CMD, I think I said it was only the sixth or seventh where I started to feel unwell. The first one to three treatments I felt fine, I could just come straight from the hospital and carry on. After the fourth and fifth I needed half a day's rest just to kind of compose myself. But the sixth or seventh, yeah they were quite sick-making. But they only lasted, that feeling only lasted a day or so, and it's no worse, perhaps it's only my judgement, it doesn't seem to be any worse than people who are sea-sick, and you get better. 

So were you ever actually sick?

Only once, which was slightly embarrassing. It was actually after I'd had the seventh treatment. I left the hospital. My wife usually came with me every single time for the treatments, but on this occasion she actually was not well very herself so she reluctantly let me go for treatment on my own. And so I had the treatment, checked out of the treatment unit, went to reception just to let them know I was on my way out of the hospital, and on the way back to the car in the car park I actually vomited, I didn't make my car. It was just once and I went back and told them, because I was told that if you were sick within a short period of time of having the chemotherapy you'd better come back because they might have to do it again. So I was in sort of two minds about whether to go back, but I went back and I just said, 'Look I've just been unwell,' and they said, 'Well, were you sick a lot?' 'No, just a mouthful I suppose,' just to be graphic. And they said, 'No that's OK, you can go home.' 

So I actually drove home, being fairly cautious how I drove because I didn't feel well, and came and put myself straight to bed and slept for about four or five hours. And I really felt I had been poisoned, whatever that feels like, you know, you sort of see TV shows where people have been poisoned, and I felt poisoned and slept and slept through it. But the next morning I was weak, of course, and felt tired and exhausted from going through it, but I was OK, appetite was back, I could eat normally, and the day after that I was perfectly alright again. So the anti-sickness drugs really do work very well. 
 

I started off really just thinking I was going to survive the CHOP. It wasn't very nice, it was probably worse than I expected. It made me very poorly and made me very ill, very sick, and I got a lot of infections while I was having it. But we survived, and it was also very hard having a young family at the time, but we did find lots of survival mechanisms, you know, coping strategies for coping with things. And the first few months were very, very hard up until Christmas, so this was treatment starting in October so it was kind of October, November, December, three months-worth of treatments. 

The first time round was the worst because we were getting to grips with all the drugs that were going to stop me being ill. After that probably the second and third times got easier because we knew what to expect and I knew what drugs to ask for, and so I was much less sick, I was on top of it a lot more. 
 

And I'd have that for about twenty minutes and then that were it and she says, 'Oh the next time you come your hair will have probably come out'. And I said, 'Oh so it's definitely going to come out then?' And she said, 'Oh yes.' Because of part of the chemo that I had, I did actually lose all my hair. That were a little bit painful as regards that it burns the follicles in your head and it just, because I didn't have long hair it was easier. And what we eventually did were we shaved my head down so that it was short and then I got in the shower and I just let the hot water onto my head and rubbed my head and it actually rubbed my hair away and it actually' But once it had come out I felt so much at ease with it because it had actually all come out and the pain had gone then, you know, there were no sensation on my head. 

I lost all my hair, my arm hair, all my pubic hair, everything just went totally. My eyebrows were about the only thing, they went really, really thin but they didn't quite disappear. But my eyelashes, the hairs up my nose, everything just went. And it were a bit funny really when you looked in the mirror because your head were just, it were like it were glowing, it were white with not having any hair and, you know, you'd got no eyelashes and you just looked very blank. I used to have a few problems with my nose, they gave me some nose cream, because obviously the hairs up your nose, you know, they protect you don't they, and you don't realise how much they do protect you till you don't have any. The same with the hairs on your arms and your legs and things, you know, I used to have right hairy toes and I still haven't got them, I haven't got hairy arms any more. I've just grown hair on my arms, under my arms. 

And she were right because within the three weeks that I went back for the second treatment I had no hair. And I started wearing, I didn't like the turbans, I used to wear the baseball cap and I had a lovely soft baseball cap and I still have it now because it's a little treasure to me and I've always kept it, and I used to wear that because it were lovely and soft. 
 

I do remember while I was on the chemo I lost all sense of smell and I lost all my taste, and everything I ate tasted like cardboard, it was just horrible. I'm trying to think what did I used to eat that I could taste? Things that were just really tasty I had to eat because all my taste buds had gone. I just remember that everything just tasted really bland and horrible so I used to go for the, I had to be careful with curry because curry used to, it was so sensitive in my mouth, you're to be careful with spicy food and stuff like that, but stuff that was really tasty I used to go for. I used to eat a lot of ice lollies and all because it just used to cool my mouth down, because it tended to burn my mouth I used to get mouth ulcers and they used to give me the Cocyl mouth wash for my mouth. That were the only thing, these are just the side effects of the chemotherapy. It just affected my nose and my mouth, my throat a little bit. 
 

And all this time you kind of, the fatigue is creeping up on. You look back and you don't realise it at first, and then you look back and you realise how tired you're feeling. And I can remember that last month of going up to London on the train, it would take me ten minutes to walk down the platform. And anything indoors was such a big effort. 

It was very hard, the fatigue at the end was, that last, I think the first, I started in the May, the chemotherapy, and for those first two months really, the first six weeks it was fine, it was just the sort of the bad taste, nothing tasted very well. And I didn't really have any sickness, I didn't feel sick, I just felt odd, I felt weird. And I remember I used to come home and I'd go to bed and I used to kind of, you know, I'd want to curl up and hold my head. But I didn't feel ill, I just felt I could sleep for a thousand years, it was just pure, pure tiredness, pure tiredness. 
 

Anyway the second week of the treatment cycle you tend to ache a lot, and I think this is because chemotherapy, as well as depriving cancer cells and building materials, also deprives your body of the raw materials it needs to repair itself. So if you mow the lawn or you go for a walk up a hill, then the night after you do it you'll wake up, probably at two in the morning, with tremendously achy legs, and that can be a big problem with sleeping. So I found three ways of combating that. 

First, where you're actually resting on the bed is painful, so if you get a light summer weight duvet with a low tog value, roll it over, double duvet, so you've got it sort of in half, then pop it under the sheet, between your sheet and your mattress, then you'll have enough padding so that where you're actually lying on the bed is quite soft and doesn't actually hurt. So that's the first thing. 

The second thing is if you wake up in the night at about three o'clock, your paracetamol that you take at bedtime, because you know you're going to get this, will wear off after about four hours. So if you have a glass of water and a couple of paracetamols by the side of the bed then you can just slosh them down. And the capsules are the best because they work faster, and then you can get back to bed and back to sleep within about twenty minutes. 

And the third thing, which I found works extremely well, is that you get a hot water bottle, absolutely wonderful, pop a hot water bottle under the bed clothes, not in contact with you but just to actually make a lovely warm sort of igloo from your waist down, and you'll find that the aching is much, much better. And I found that that has revolutionised my sleeping habits, I now get a lot more sleep because everything is warm. 

Now other things that happen with ABVD, something, probably the most nasty side-effect of ABVD is to do with this Harry Potter business about the drugs being kept dark, because the stuff is actually quite caustic and it does actually rot your veins, so you get a nasty sort of ache that goes all the way up your veins from exactly the point where they put the drug into you, about up to your arm pit. And it comes on almost exactly six days after a treatment. Very odd, because if you just tap the vein on your arm after treatment, then you feel nothing, but after about six days the whole things gets inflamed and because the pain is going up into your spinal cord through what's called a sympathetic nervous system, it has a very nasty nagging quality to it and it also tends to propagate down your arm into your fingers if the drip site is too low. So I've learnt over the months that the higher up your arm they put the stuff into the less of your arm is affected by the pain. And it is bad enough to keep you awake, and I've actually laid awake till about four o'clock in the morning due simply because I couldn't get my arm comfortable. 

And again local heat does work, so I recommend a wheat bag for the affected vein. If you get one of these wheat bag things and pop it in the microwave until it's nicely warm but not too scalding, and then you just literally rest this thing over where most of the pain is, because there's usually about six inches that is the most painful part, and then you can sort of drape that on there and the pain sort of melts away after about five minutes and then you can go to sleep. You tend to wake up when you want to turn over, and just replace it somewhere else. And one or two nights I've had to heat the thing up two or three times, but it does actually help because I think that is probably the most debilitating thing, if you can't sleep. Chemotherapy doesn't seem to make you tired, of itself, it just stops you sleeping, which makes you tired, and that can be quite a nuisance. So unless you can sleep in and there isn’t too much noise and things where you are, and you can sleep in during the day, then it is nice to be able to get to sleep during the small hours so you can do more the next day.

The worst bit was the' when you'd had the treatment for about a week, you had a complicated regime of medication and the pharmacist went through it and said, 'Oh that mustn't be taken with that and that mustn't be taken with milk' so for that week, one week in three, my life was completely regimented, and I hate fussing about food and fussing about hygiene and things and I had to sort of write out the order of my day, so' take this, half an hour later take that, don't have any milk until two hours after that, have the mouthwash regime at this time and then half an hour later the second mouthwash and it was really tedious and went against the grain but I followed it slavishly because I thought the only way to get better is to do exactly what they say. 
 

So we had the first, so all the bits and pieces and everything was attached and you'd got your needles with the orange stuff and the drip bag with the other stuff, and so all the paraphernalia happened and I had it all pumped in, and just as we were about to leave I went into my first hyper. And the sugars and the shakes and all the rest of it started and I was having a really bad reaction to the bleomycin, as it turned out. But of course one didn't know, it was absolutely terrifying, so stuff was pumped into me but couldn't be pumped into me because, crazily, a doctor has to be present for them to, so the nurses knew what to do but they couldn't do it until there was a doctor to sign off on it, and there happened to be nobody in the unit at the time. It was really scary and it wasn't helped by the registrar coming along and saying, 'Oh I've never seen than happen before'. Great! You know, here I am, another perfect learning opportunity for everybody. 

And it's also in that period, it is such a scary time because being the first diagnosis you just don't know, you know you've got this terrible disease and you know you've got a disease that can kill you. So everything that happens is terrifying, anything that goes slightly wrong, slightly deviates from what's being predicted, scares you stupid. I mean I think further down the line you work out that no two patients are the same and that medicine is not an exact science and it's all totally unpredictable and you've just got to roll with the punches. But when the first punch hits you it's not easy. 

So after that little drama we knew what to do, so after that when I was having my treatment we knew that I had to have, I guess, some sort of anti-histamine to stop me going into the allergic reaction, so there was an extra needle to be counted before treatment commenced every fortnight.