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Colorectal Cancer

Coping with chemotherapy for bowel cancer

Many people worry about having chemotherapy because of the possible side effects. These can range in intensity from mild to severe and may include fatigue, nausea, vomiting, diarrhoea, mouth ulcers, hair loss, sore skin on the hands and feet, and increased susceptibility to infection. There is no way to predict exactly which side effects any one person might experience or how severe they might be. For many people chemotherapy also presents emotional and psychological challenges. Specialist oncology nurses can provide information and support for people undergoing chemotherapy.

The majority of people said they had been given a lot of information about chemotherapy and its possible side effects before they started their treatment although this only partially prepared them for the experience. They also felt well supported and cared for by their oncology nurses. 

 

Stephen appreciated being with other young people on a specialist teenage cancer ward when he was having his chemotherapy. He also found going back to school during his treatment helped him cope.

Stephen appreciated being with other young people on a specialist teenage cancer ward when he was having his chemotherapy. He also found going back to school during his treatment helped him cope.

Age at interview: 19
Sex: Male
Age at diagnosis: 15
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Yeah, as an inpatient I was treated on a specialist Teenage Cancer Trust ward, which so I was treated with other young people my own age, which was incredibly helpful just to know there’s others out there, so that made that experience as bearable as possible. And then when I was treated as an outpatient I was kind of in-out, so it was kind of relatively in hospital for two hours, it was a bit manic in the kind of day case centre they had but because it was only outpatient I was back home that night I couldn’t really complain.

So in the Teenage Cancer Trust ward I got to spend time with other young people, and there was stuff teenagers use, there was PS3’s [Play Station 3’s], there was musical instruments, which kept me busy through chemotherapy because of course chemotherapy is not the nicest stuff.

No throughout all, all of my chemotherapy treatments I went back to school as much as I could and kept up with studies, and that was…

Oh you did, good.

…my way of coping.

Fantastic. How did people react at school?

I was quite surprised and probably a lot of teachers or for example a lot of people wanted to try and wrap me up in cotton wool and say I was doing too much, but no I enjoyed trying to do something it paid off and in my GCSE year for example, this was when I was first diagnosed so when I had surgery and the six months of chemo, then at the end of it I got five A* and 4 A’s and 2 distinctions.
 

Chris thinks it would be a good idea if people got their flu injection before starting chemotherapy.

Chris thinks it would be a good idea if people got their flu injection before starting chemotherapy.

Age at interview: 46
Sex: Male
Age at diagnosis: 45
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Have you got any message for other people who are going through this, or about to go through it?
 
Well there’s one small practical point which is something which sort of affected me slightly. Essentially, depending on the time of year obviously your treatment is starting, it’s clearly a good idea to have a flu vaccination, and getting that done before your chemotherapy would be a good idea, before you start obviously becoming more vulnerable to infection. And also in my case we didn’t manage to do that, it wasn’t kind of on anyone’s check list as far as I can establish, of things to do before starting chemotherapy. So we had difficulty actually finding an appropriate time within the cycles when my neutrophils were good and my temperature wasn’t high and all the rest of it, to time that.
 
So obviously discuss with your doctor but from my point of view it would have been much more reassuring if I had managed to get the flu vaccination done before I started chemotherapy.

People with stomas were not always adequately prepared for the effects that chemotherapy might have on them. One man with a colostomy spoke of "running to the toilet about 20 times a day" to change his bag when his chemotherapy caused severe diarrhoea. Another man with an ileostomy felt that the impact of side effects on stoma patients was not adequately recognised.

 

He felt that his consultant failed to acknowledge the impact of chemotherapy on stoma patients.

He felt that his consultant failed to acknowledge the impact of chemotherapy on stoma patients.

Age at interview: 60
Sex: Male
Age at diagnosis: 58
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And the consultant, who was a different man, uh, for the chemotherapy, nice fella, but brilliant understatements that would have dug a hole a mile deep you know. I mean he would say to you for example, "Oh, you might get diarrhoea but you've got a bag, you'll be alright."

Well that's a pretty insensitive thing to say to be honest with you, you know. It's a non-thinking response, just to put it politely.

And as we politely pointed out we already knew that wasn't true you know, it doesn't actually help having a bag, it actually makes it more difficult, but as long as you know that, you're tuned in.

So we always, for example, in those days we'd always have five or six bags ready cut and just sitting there so that during the night I would shout through the wall "Bag's gone!" And the alarm clock went off, you know, you bang on the wall or something and we'd fix it. You know, go back to sleep and that would be it.

It would happen during the day, which is even more uncomfortable because you'd be fully dressed and stuff like that and that of course puts you off going out and a whole load of other things.

 

Chris recalled having chemotherapy. The site where the drug went into his arm became quite...

Chris recalled having chemotherapy. The site where the drug went into his arm became quite...

Age at interview: 46
Sex: Male
Age at diagnosis: 45
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I mean I was started on a regimen of chemotherapy which involved a drug called oxaliplatin which was infused on the beginning of a three week cycle. So on the first day I went in as an outpatient, to something called the day treatment unit at the [name] hospital, was given this infusion, and so a line was put in a vein in my arm or in the back of my hand. That went in over a couple of hours; and actually the site where the drug was going in became quite uncomfortable. And that’s sometimes even the kind of the limb that the drug was going into became quite uncomfortable during that time. And that sort of discomfort lasted a number of hours afterwards. So it was a good idea, certainly for those early cycles to have somebody with you to drive you home, I would sort of say for that particular regimen anyway, because yes it wasn’t particularly comfortable.
 
So the oxaliplatin went in on sort of day 1. I then had two weeks of tablets to take of a drug called capecitabine. So that’s taken orally it’s absorbed in the gut and it’s actually converted to an active chemotherapy drug called 5-FU. So that was the regimen that I started off on.
 

For those given chemotherapy into a vein (intravenously) devices like Hickman lines, PICC lines and portacaths, (central lines that are inserted and then left in place so that drugs can be given and blood taken without having to repeatedly insert new needles) often made it easier for people to deal with their chemotherapy. For a man who was anxious about injections having a PICC line made a tremendous difference. 

 

Having a PICC line made chemotherapy easier because of his fear of injections.

Having a PICC line made chemotherapy easier because of his fear of injections.

Age at interview: 69
Sex: Male
Age at diagnosis: 65
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I have to explain that I've got a PICC line in for, I'm sort of allergic to needles and the sweat broke on me, when I even seen a needle the sweat broke on me.

You mean you were sort of phobic about needles?

Yep, it was of definitely I had, the sweat, it was unbelievable, I couldn't believe the sweat that just run off me when I seen these needles and all and they tried to get them into me arm and all. And uh, they decided to put a PICC line in which was a great help, definitely a great help, the PICC line, I had no real problems with it.

But after my whole treatment which lasted five months, I was given five days every month, and then they give you a rest' five days on, three weeks off really, which made up the month. And after that when I went down to get, the very last time it was heaven to get that PICC line pulled out of me. Actually I still have the PICC line, they gave it to me.

You kept it as a souvenir?!

Yeah, they gave me the PICC line! So I still have the PICC line, I bring it to show to people when I'm talking to them you know, about chemotherapy.

 

Chris found it very helpful to have a PICC line for his chemotherapy.

Chris found it very helpful to have a PICC line for his chemotherapy.

Age at interview: 46
Sex: Male
Age at diagnosis: 45
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There was an alternative regimen which they could use, which again consisted of Oxaliplatin infusion, but instead of taking tablets, which were converted to 5-FU, sort of metabolised, in your body. It was actually taking 5-FU directly intravenously. Which means that the site, the regimen that I switched to, something that’s called “Modified de Gramonts,” consists of, its two week cycles. I go in on day one, have the Oxaliplatin infusion, but I actually have that through something called a PICC line, which is basically a sort of a semi-permanent tube, narrow tube which goes into a vein in my arm. And actually feeds delivers drug into the vena cava, so the big vein near to my heart.
 
The drug was infused that way. Now one of the advantages of that for me is that I’m actually totally unaware of the fact that the drug is going in. I don’t have, there’s none of the local sensitivity that I experienced with the lines going in the back of the hand, or the arm. It’s the same drug going in, but it’s just much, a much easier way to sort of have it delivered from a sort of a comfort point of view.
 
What then happens is instead of taking tablets for the next two weeks, they actually then set me up with something which is called a pump, which actually consists of a balloon full of the drug 5-FU which sits within something that looks like a clear plastic baby’s bottle, hangs from a sort of a holster on my belt essentially, and delivers over two days, the 5-FU directly through the PICC line into my, into my veins.
 
And again I mean I, there’s no sensation associated with that at all. It’s only two days and then it’s done and dusted so out of a 14 day cycle, there are two days when I’m sort of, I have this plugged in and the drug being delivered. Following that all I have is a very discreet , I can probably if I stick my arm in the air, it’s tucked up here. Am I allowed to do this sort of thing?
 
This is the PICC line here, I don’t know if you.. So the vein, the tube is going into the vein here, it disappears down a hole there; this is a sterile dressing which is changed weekly on top. And this is where things are connected to, so the drug is actually delivered into here. So for two days I have a tube connected to that, which kind of I tuck under my shirt, it goes down through a bottle on, or a pump on my belt, and for the other twelve days of the two week cycle it just sit’s discreetly tucked away, and that there is no sensation like that doesn’t hurt at all. .

 

 

While he was having chemotherapy Chris experienced a number of side effects, including hand-foot...

While he was having chemotherapy Chris experienced a number of side effects, including hand-foot...

Age at interview: 46
Sex: Male
Age at diagnosis: 45
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I think, I mean they give you a big long list of side effects, and I think I’ve probably experienced most of them to, to some degree. One of the most, one of the dramatic ones really was something they call I think hand-foot syndrome. Which is associated I believe with the Oxaliplatin and at the same time as I was having the problems at the end of the year, the beginning of this year, so in sort of January time when I was in hospital after the problems with the initial regimen, my hands went really quite dark red colour, and the soles of my feet as well. And quite a lot of skin came off, it was quite a, it wasn’t just a very superficial kind of like sort of after sunburn sort of type sort of skin just peeling off, just the outer layers. It went, it was quite deep and it was quite unpleasant.
 
Horrid.
 
I think it was more unpleasant for others to look at, I think. I mean we used a lot of moisturising creams. I was in hospital at the time, and they were able to give me some, some ointment, creams and so on to sort of help with that. But that, that again is listed as kind of one of the known sort of side effects.
 

Some people said that their fears about chemotherapy were worse than what they actually experienced. One man had nursed his late wife through chemotherapy for leukaemia and feared his own treatment would be as severe. He explains how discussing his concerns with an oncology nurse reassured him.

 

Having nursed his wife through chemotherapy he feared going through it himself.

Having nursed his wife through chemotherapy he feared going through it himself.

Age at interview: 70
Sex: Male
Age at diagnosis: 68
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I had experience of cancer in as much as my wife died a couple of years before my diagnosis. But hers was in fact leukaemia, she had multiple myeloma and she lived two and a half years after diagnosis. So in a way I was aware of cancer, I was aware of chemotherapy, I was aware of what was involved.

And when they said chemotherapy for me I was scared, I was, I, I was frightened. I didn't think I could take it because I saw what it did do to my wife because her chemo was obviously, although I didn't realise it when they said it to me, far more severe, far more, of much greater strength than my chemo.

And I did need a bit of counselling from the sister in the oncology unit. She sat me down and talked to me for half an hour. She reassured me that the chemo that I was going to get was not as severe a regime as that that my wife had had. That helped a lot.

She reassured me that I could stop it at any time and pick it up again at any time. She reassured me that they would take great care and not knock me about too much. And she was, she was lovely about it, she was great, yeah. You know she was young enough to be my daughter but she talked to me like my grandmother!
 

Several people were especially worried about losing their hair though the most anyone did experience was substantial thinning. One young woman explains how she feared hair loss as an unmistakeable sign of cancer.

 

Going to a cancer clinic for chemotherapy made her confront her own situation.

Going to a cancer clinic for chemotherapy made her confront her own situation.

Age at interview: 35
Sex: Female
Age at diagnosis: 32
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But when I went to the cancer hospital where I had my chemotherapy, that's really where I had a real sort of smack in the face actually. The first appointment I had there was devastating really.

The whole experience of going to a cancer hospital still stays with me now. It was only an out-patient's appointment but er I found the whole experience very sort of, very upsetting. You see a lot of very ill people and they're very obviously ill.

I think actually one of my main concerns was "am I going to lose my hair?", that was one of the first things I said which is so trivial, when you think back, when I think back on it. I think I don't know why on earth I thought that was a problem but at the time it was really important to me that nobody else, that I could get away from it, that nobody else would have to know that I had cancer, that you know I could walk down the street or go to the shops and nobody would really know there was anything wrong and that was quite important to me.
 

Others felt unprepared for the severity of their side effects. One woman describes how incapacitated she was despite having been told that she could go back to work.

 

She was too debilitated by chemotherapy to go back to work.

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She was too debilitated by chemotherapy to go back to work.

Age at interview: 33
Sex: Female
Age at diagnosis: 28
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That was quite a low point then really, sort of starting chemotherapy and I had my chemotherapy, a continuous infusion of chemotherapy with a drug which wasn't supposed to be, like a really strong chemotherapy drug, but I actually found it very debilitating. I really couldn't do much.

You know I was told that I might be able to go back to work but there was no way that I could have worked whilst I was having chemotherapy. I couldn't do very much at all.

And I had quite a lot of side effects. I didn't lose my hair which was something I was really worried about but I was quite sick and I lost my appetite and I lost a lot of weight and I didn't, I didn't have much will to live at that time.

Those who did experience substantial side effects often found that they became worse as the treatment progressed. Several people had their treatment stopped or the dosage adjusted when they told their oncologist or oncology nurse about how bad their side effects had become.

For many, the period of their chemotherapy was a low point in their cancer experience. Some people became depressed while others were demoralised by the severity of their side effects. One man was repelled by the thought of poison going into his body and found that even the smell of the clinic upset him. Another woman described feeling as if her head was 'being grilled'. 

Several people described the shock of going to the cancer clinic and being surrounded by so many other sick people. For many it was the moment when the seriousness of their situation finally hit them (Interview 18).

 

Recalls the impact of seeing so many sick people at the chemotherapy clinic.

Recalls the impact of seeing so many sick people at the chemotherapy clinic.

Age at interview: 60
Sex: Male
Age at diagnosis: 58
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I mean the people that we've seen in, in the process of going through clinics, particularly the chemotherapy thing, uh, I mean that maybe has been the hardest thing to live through because um, I mean even if I did feel or think that I wasn't well you know, that I was ill and that, I'd even feel sorry for myself on occasion. You'd go into a chemotherapy clinic you know, and all I was going in for was an injection you know. You see people sitting around you, you go for eight, ten, fifteen weeks at a time and gradually they drop off the board, their names don't occur.

Well you've got to be thick not to know that people have died or have deteriorated in front of you, you know. I think that's the hardest thing I think that I've experienced in the last 12 months. And I think that's had to be, we've had to take that into consideration because if you're not careful you can become part of that you know. Again it's not that I wouldn't care or feel for them, I did, still do, particularly for individuals, you've known you know. But uh, that was the hardest thing.

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Last reviewed August 2016.

Last updated August 2016.

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