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.
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.
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.
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...
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.
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.
While he was having chemotherapy Chris experienced a number of side effects, including hand-foot...
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.
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.
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.
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.
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.
Last reviewed August 2016.
Last updated August 2016.