Jim - Interview 21

Age at interview: 24

Age at diagnosis: 23

Brief Outline:

Jim was diagnosed with acute lymphoblastic leukaemia after feeling tired on exertion. He spent 35 days in hospital having intensive chemotherapy followed by outpatient chemotherapy. He is in remission but his treatment will continue for another 2.5 years.

Background:

Jim is a video game designer. He is cohabiting with his partner and has no children. Ethnic background: White British.

More about me...

Jim started feeling tired on doing physical activity and assumed he was unfit. Then he wondered if he had a perforated lung. He went to his GP who sent him for a blood test. He returned to the hospital the next day for more tests. He was told he had leukaemia and would be kept in and moved to a specialist centre as soon as a bed became available. He was allowed home to pick up some belongings where he told his girlfriend the diagnosis.

 

In the specialist centre Jim was told his precursor B cell acute lymphoblastic leukaemia required immediate chemotherapy. He was invited to bank his sperm as the treatment could make him infertile. This meant leaving the sterility of the leukaemia ward to a nearby hospital where he feared contracting an infection. He was asked to return a second time to bank some more sperm but collapsed from stress on the way and returned to his room. He later discovered that he could have produced a sperm sample in his room to be delivered to the other hospital, which he would have preferred.

 

The same day Jim had a PICC line inserted in his arm for administering chemotherapy, which remained in place for six months before the entry site became inflamed so the line was removed. He tolerated his first course of chemotherapy well but the steroids made him bloated and hungry. The choice of hospital food was limited but after speaking to the caterers he was given extra options, plus his mother and girlfriend, who stayed in the hospital with him, brought in food. Jim found that intrathecal (spinal) chemotherapy gave him severe headaches, which were not alleviated by painkillers, only by lying flat, until this was prevented by using a smaller needle. Just as Jim was leaving hospital after a 35 day stay he had a dystonic reaction to the anti-sickness medication he had been taking, affecting the muscles of his tongue. Once swapped onto a different drug this stopped.

 

Jim found it took time to adjust to life at home again after such a long hospital stay, and also to being treated in the day care centre, where he has been treated ever since with a combination of intravenous, intrathecal and oral chemotherapy. Jim is in remission but his treatment will continue for another two and a half years.

Jim wore a hat in winter to cover his hair loss; at other times he went bare-headed; he gradually got used to it and it didn't bother him much.

But about the hair loss. I lost a bit and it was quite patchy, and obviously it makes you look like there’s something wrong with you, like you’re ill - not that I really felt that but obviously other people, that’s kind of what they’d feel, because you don’t look at your hair all day because it’s on top of your head, for me anyway - and wasn’t really an unpleasant experience.

 

The second time when I had, just a couple of months ago, these three shots of this vincristine drug and hair kind of went everywhere. I’d started to get my hair back and I cut it so it was all an even length, which looked much better than kind of going around with bits of hair sticking out. And it was the winter when I lost my hair and I was wearing lots of hats anyway, and I’ve bought lots of hats so I quite enjoy wearing hats, which is nice, and it’s a good present for anyone to get you. But when I lost all my hair that was a different experience. First my head became very cold very quickly. But like most great things, your body adapts and I guess it pumps more blood there or whatever happens to baldies, or people whose hair thins and they shave all their hair off. And you just get used to it and so your head stops feeling cold and you can walk around like a skinhead and feel fine.

 

And lost lots of hair on my legs, which is a bit funny but it’s not such a bad thing. And I suppose a good thing is if you’ve got, you know, I’ve got quite fair skin and got quite a few moles on my arms and such, and obviously the hair grows there, you know, accelerated, not so desirable rates and doesn’t look fantastic. But then when all your hair falls out those go, it’s like, wow, cool. I don’t have these unsightly hairs anymore.

 

And the first time my eyebrows stayed in, which I think helped a lot because not having your eyebrows does make you look more weird. And the second time my eyebrows pretty much totally went, and no hair on your head and people’s reaction would invariably be that you look a bit ill. But there are people who aren’t ill and have alopecia and such who don’t have any hair, ever. You know, and it’s just the same when you get a haircut and people say, “Oh, you look a bit different”, you know, it looks a bit strange or something. And but they’ll just get used to it and the same with yourself and so it ends up not making much difference for me to how I felt.

Jim had severe headache for days after each lumbar puncture. The problem was eventually referred to an anaesthetist who recommended using a smaller needle and a steroid injection, which worked.

The worst thing though was the intrathecal or spinal tap, sometimes called lumbar puncture, delivery of intrathecal methotrexate chemotherapy into the cerebrospinal fluid. It doesn’t really, you know, bit of anaesthetic, you know, and a brave face. You don’t really feel much pain, it’s a bit uncomfortable, sure, but it doesn’t last that long. That’s okay, but the problem I had for one reason or another, no one could work out, that there’s a good chance that the pressure around the fluid in your spinal column and around the brain has to be just right or you can get what are called pressure headaches which, in my experience, no painkiller can even touch or go anywhere near. You know, I tried everything they’d give me at one time or another, you know, morphine in the arm, oral morphine, codeine, tramadol, lots of paracetamol. Nothing really did anything.

 

And when I was in the hospital a couple of days after I had this spinal tap procedure I noticed that I’d start getting one of these headaches. If I was sitting up for any prolonged period of time, about half an hour, and the only thing that would make this go away was lying flat. And so this reduced my mobility a lot more than I’d want and I think a lot more than other people, and this isn’t a particularly common thing and was probably caused by some of the spinal fluid leaking when they did the procedure, which is no fault of their own. The procedure, every time I had it, went fine. But at one point needed, it took about ten days of these headaches slowly being able to sit up for longer and longer periods before I could spend the whole day sitting up in a chair, which certainly made things more difficult, but at least there was the relief of being able to lie down.

 

After I was let out of hospital which, I am going to continue to have these procedures every several weeks for a couple of years, so you have to kind of get used to them. It was about seven days after I’d had the procedure I started getting these headaches and they’re really bad, and it got to the point where even if I was lying down it was terrible. And so I admitted myself to my local hospital, not the one I had the chemotherapy in, saw various people, ended up going back to the main hospital just with this problem of these headaches. And the answer, which was not given by anyone on my team, they did a referral to a consultant anaesthetist who does hundreds of these spinal taps mostly for pregnant women, I believe. And the answer was to use as small a needle as possible. The paediatric sized needle rather than, there’s only very, very, very, very, very tiny difference, and to give me some dexamethasone, which is a steroid, just intravenously, and it reduces swelling. And since I’ve been using the smaller needle and the dexamethasone and taking extra care not to do any bending or heavy lifting for about two weeks after the procedure, I haven’t had these headaches at all, which has been a godsend because if I had them every time my life would be a lot more miserable because other than that I feel fine.

 

Jim had a central line fitted in his arm, which he says was the nicest way to have toxic drugs put into your system. It was comfortable and not unsightly but he had to wear an arm band in the shower.

And the same day I had to start chemotherapy. That meant putting in a PICC line [peripherally inserted central catheter], a central venous line, which was actually one of the cooler and more pleasant experiences of having the chemotherapy. I had a very nice specialist nurse who only put in these PICC lines, that was her sole job. And she put it in with no pain. Tried to go in the first time and didn’t go in through a fantastic vein so had to find another one, which left some bruising which, bruises when you’ve got that much leukaemia take a long time to heal and don’t look particularly nice, but other than that it was just cosmetic really. But the PICC line didn’t feel anything. All your drugs can go straight to your heart and then be pumped away around the body. And it’s definitely the nicest way to have toxic drugs put into your system, without a doubt, don’t have to think about it. It doesn’t look unsightly. It was comfortable. Make sure you put it on your arm that you don’t use all the time. But it doesn’t really get in the way other than showering, when you have to wear an arm band, which is a bit funny. You’ve got to keep the thing clean. Always make sure that someone wears gloves and cleans the thing properly when looking after you.

Jim was always scared of catching infections - he says don't be afraid to tell the nurses if you think their hygiene precautions aren't good enough.

I always felt nervous that if you pick up an infection you need to go on to antibiotics. And you don’t want to pick up an infection anyway, you’d rather avoid colds all year, all winter long, they’re not worth having. And the same thing goes for picking up an infection when your immune system is low, I think. And I was always worried about that, and never if you feel the nurses, or anyone who’s attending your line, or putting a needle in you or something, isn’t taking the proper care and attention, even though that you know they’re professionally trained to be clean and hygienic, if it’s not the level of hygiene that that you’d like then just tell them and don’t feel bad about it. They do these things all day and they’re not going to see if you get an infection. If you do get an infection you’re probably not going to know anyway that it’s come from them or even from sticking a needle in you. So just for your own comfort, don’t be afraid to tell them how you like to be treated. Even though they’re the professional, you’re the one who’s going to have to live with whatever if you did get an infection and you’d be kicking yourself really.

Jim expected steroids to keep him awake but they didn't; his appetite increased so much that he ate two meals each mealtime without gaining weight.

So the drugs went fine really. The strong drugs, like vincristine and daunorubicin, take their time to react anyway. The steroids probably have greater noticeable effects. I think it was twenty, maybe thirty days of dexamethasone, which is said to keep you up at night and you shouldn’t have them too late in the evening, and that’s what the kids on the ward downstairs had reported. But I was fine and seemed to be able to take them whenever and they don’t keep me awake. Don’t make me too tetchy either. The only thing they do do is - I’ve always been a pretty thin, skinny guy - was make my stomach extremely bloated and make me very hungry, which is a good thing because even if you’re sitting on a bed all day, or in a chair, and not really burning any calories, you can be sure that the cocktail of chemotherapy drugs you’ll be given will be putting your body under, you know, getting it to use a lot of energy, which brings us on to the food and the diet.

 

The NHS food from Interserve, which isn’t fantastic, they probably expect most people to stay in the hospital a couple of days, 5 days or something, not 35 days. So there’s choice but it’s not fantastic. However, it’s definitely worth speaking because anything you don’t like or you don’t think you’re getting enough of, or you’d like something more, just ask. I ended up speaking to the caterers who prepared the food, and they would be able to give me foods that weren’t on the check boxes of what you’re allowed each day. And quite often I’d end up with two meals at lunchtime and two meals at dinner, and with the steroids I’d happily eat them both. I’ve never eaten so much food in my entire life, definitely, never eaten so much food and I didn’t really put on much weight. My belly became quite bloated but obviously my body was using all that food. And I ended up having not just Weetabix for breakfast but they were able to bring me a microwaved full English breakfast, which is really a fantastic thing to have in the morning if you are hungry.

Jim's hair fell out a couple of weeks after starting treatment; he used a sticky roller to pick up hair from around his room.

Okay. You haven’t really talked about hair loss. You’ve obviously lost your hair at some stage.

 

Yes, three times now.

 

Three times.

 

Three times really.

 

How do you feel about losing your hair?

 

Well, the first thirty-five days in hospital, after a couple of weeks my hair started to come out a little. And I had sort of medium length hair and it was all over the pillow and every time I put my hands in my hair there’d be, not huge clumps of hair, and it was quite even, which was quite nice, so I ended up looking like a new born chick, as my girlfriend said. We had this marvellous device from Japan which is like a paint roller but it has sticky tape on it and so you can pick up all the hair with that. And you can buy them in Muji stores in England and they’re absolutely fantastic for getting rid of hair that you end up leaving everywhere.

Having just been told he had leukaemia and no immune system, Jim was stressed by having to leave his hygienic isolation room to go to a dirty room elsewhere in the hospital to bank his sperm.

And one of the first things they said was that, “The chemotherapy you’re going to have will affect your sperm production. Hopefully that will come back but we don’t know for sure so we’re going to ask you to do some sperm banking.” And I was, obviously they don’t want me to catch an infection because my immune system would be very low, although I was feeling absolutely fine, and that meant going from this positive pressure, hyper-sealed room, my own room, my own bathroom, it was very clean and very nice. It meant going over the road to this Victorian building, and luckily a nurse took me over, but then I had to sit around there on my own. You’ve just been told that you have no immune system and you really have no idea whether it’s been mentioned that any infection you could get could be really serious and certainly something that you want to avoid. And you’re asked to go and sit in a room, this dirty little room, with some other random members of the public who happen to have a cold. And you’re just sitting there trying to put your hoodie over your face because you don’t want to breathe the air that they’re breathing out. And that was a really horrible, traumatic experience. This is under the NHS so I’m sure there are better places, but that wasn’t what I wanted right then.

 

But it was okay and the next day they started chemotherapy. And I had a PICC line put in, which we’ll get to later. But they said that the sperm banking, we should try and do it again, we’ve got some and it’s live and it’s okay but the more the better really. So they said, “We’d like you to go over again.” And by this stage I’d heard a lot about chemotherapy and the nerves were starting to build up. And I got to the lift with the nurse who was going to take me over that day and she said, “So how are you feeling? It’s all quite a lot isn’t it?” And I felt like saying, “Yeah, it bloody well is, isn’t it.” But I just kind of nodded my head and right then panic set in and all the muscles in my back just kind of seized up. I just turned totally white, no energy, it’s like “Oh, I’ve just got to sit down. This is horrible. It’s horrible.”

 

So I walked back inside the ward and sat down. And she left me to go and do something, which she shouldn’t have really done, should have stuck by my side. And I went back to my room, as pale as a sheet and worked out that it’s just stress, and then found out that actually I could do the sperm banking in my room, in my nice clean room, not have to go over to this horrible place, and they could just take the sample over and it would be fine, which just left me annoyed and stressed, and that really wasn’t a very pleasant experience. But you don’t really think about, well I wasn’t really thinking about kids anyway, more just trying to find out what’s going to happen to me and how everything’s going to go.

In Jim's experience the NHS was not interested in giving specific dietary advice but he...In Jim's experience the NHS was not interested in giving specific dietary advice but he considered it worth investigating himself to be as healthy as possible.

Okay. Is there anything else you want to say?

 

Yeah, I’d like to say something about nutrition and supplementation. Whenever I’ve spoken to the NHS staff they’ve always just said, “Healthy balanced diet.” There are no answers to what’s the best diet for anyone, and everyone is different. But there are lots and lots of questions. And certainly it goes without saying that you are whatever you put into your body, whether it’s chemotherapy drugs or whatever food you eat, whatever vitamins you take, whatever you drink. That’s a large proportion of what your body’s made up of. So definitely having good nutrition is going to make it easier for your body to survive, maybe not get cancer, maybe do a better job of fighting it, maybe have your organs survive better through all the chemotherapy you have. But the NHS really don’t take, I can understand, they don’t have the money. You know, food and supplements can’t be patented like drugs can and so there’s no money there really.

 

But it’s definitely worth taking on board yourself and reading up about and trying to find stuff that’s going to make you more healthy. But everywhere I encountered the NHS just didn’t really take any interest. Just always said, “Healthy balanced diet. Go and eat a McDonald’s if you want one.” So yeah, I mean I’ve tried to eat a healthy diet and take certain supplements and I feel fine. I’ve had minimal side effects from the therapy and so I feel that I’m doing, not exactly the right thing, because there is no answer, but not doing anything wrong and not really neglecting anything. So there are other people outside the NHS who can give information. But it’s definitely worth eating your greens. Yeah.

Throughout his 35 days in hospital Jim had either his girlfriend or his mother stay overnight on a sofa in his room, which he found a comfort. They also brought him fresh fruit and vegetables.

And very kindly my mother, who stayed with me, or my girlfriend, in the same room, there’s a sofa to the side that they could make up a bed on. The nurses gave them pillows and blankets and they stayed with me so I had someone with me every night for those thirty-five days, which was a huge amount of support and help. It was tiring and stressful for them, obviously, but I couldn’t imagine being alone. I don’t know how other people survived, but it was fantastic. And I had them bring in lots of fresh fruit and veg that the NHS can’t really afford to give you, from local organic shops, which gave me a bit more variety and lots of vitamins and so on, which was good. And I got through those thirty-five days pretty well.