Living with and beyond cancer
Pain
Most people living beyond cancer do not experience long term pain. However some people do and this is either due to direct damage to tissues or structural changes caused by surgery, scar tissue from radiotherapy which may stop organs functioning properly, or direct damage to nerves by chemotherapy causing neuralgia pain. Beverley (Interview 10), who had breast cancer eight years ago, was left with daily pain which her doctors have told her is due to scar tissue from her mastectomy. Another woman who'd had cervical cancer was told that her right hip gets painful because her radiotherapy treatment has ‘frazzled it like a chicken’. A few people had pain due to nerve damage, such as this man who six years after treatment for colorectal cancer takes pain relief medication and finds that the best relief comes from resting.
Pain was a worry for some people who thought that it was a signal that their cancer was back. This woman, who experiences episodes of extreme pain due to scarring and adhesions (fibrous bands of scar tissue that form between internal structures joining them together) from surgery for colorectal cancer, described how she had been worried her cancer had returned.
Bowel adhesions from surgery for colorectal cancer cause her episodes of pain for which she needs to be hospitalised. At first, she was worried the pain meant that her cancer was back.
Bowel adhesions from surgery for colorectal cancer cause her episodes of pain for which she needs to be hospitalised. At first, she was worried the pain meant that her cancer was back.
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So what was it like the first time this happened?
The first time it happened it happened in South Africa. My brother-in-law was our GP there and I came back from work and felt awful, and at about 1 o’clock in the morning my pain was getting worse. I just got into the most terrible agony and started vomiting, and we called for him and of course he rushed me into intensive care straight away. And I must say that was all we could do, and I was monitored, I was put on 2 drips, very much the same treatment as here, and I just had to wait for the pain to subside. I mean I was given, I think it was morphine at the time for the pain to subside, it was pretty acute.
What did you think was happening to you when you began to experience all that terrible pain?
The first time I got a fright because I thought what is happening, is it cancer again? And fortunately it wasn't.
Would it have been useful to know in advance that this was a possibility?
Yeah I think so, I think it would've been useful. Now I know but it's none the less very traumatic when it happens, but I can almost tell the signs beforehand now, and I can see when I'm struggling to irrigate if it's a problem and I will try perhaps twice that day to irrigate and if it's still a problem then I got straight onto the steroids. I mean with experience and time and increased knowledge gained from the doctors, because every time I get a bit more knowledge I've learnt to manage that too.
Long-term pain had different effects on people’s lives. One woman still couldn’t lift heavy things due to weakness from surgery to remove a lymphoma. Beverley had found it difficult being at work due to her pain and feeling ‘dopey’ as a result of the strong painkillers she needed to take. One woman living past cervical cancer had to adjust her working life in order to manage her pain; she found that it was too difficult for her to travel to work and work full-time in an office, so instead she set up a home office.
This woman found it difficult to return to and travel to her full-time job after having cervical cancer. She set up a home office and still finds it distressing when her pain returns.
This woman found it difficult to return to and travel to her full-time job after having cervical cancer. She set up a home office and still finds it distressing when her pain returns.
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So how does the pain affect your daily life?
To start with, if I sort of back track, I went back to work full-time. I started from home, because I had a very understanding employer, and I started from home sort of part-time and then I went back to the office part-time but worked full-time, some from home, and then in October, had the operation at the end of May, in October I went back to the office full-time. But I was in a terrible amount of pain and I don't know why I put myself through it now because I should have realised I'm on sort of maximum doses of pain killers and in agony all the time, but determined to get on and do my job and ignore it. I went back to the consultant and she recommended some treatment, which was a sort of heat treatment thing called Curapuls, I went to the local Physiotherapy Department for that quite close by. And they warned me that might make it feel worse to start with, which it did, it made it feel a lot worse but it didn't start feeling better, so in the end I stopped that before the end of the treatment because it was just too much for me. And around that time I actually rang up one of my colleagues in the morning and said I couldn't come into work that day, and she sort of made me realise that I was, you know, doing too much, and so I actually had to take another six weeks off sick leave from work. Because the first time, when I had my operation, the company were very good and kept me on full pay, which was wonderful, but on the other hand I felt very much obliged to get back to work as soon as possible. So the second time I actually took sick leave, which meant the pressure was off a bit. Following that I arranged to work, I set up an office from home and I arranged to work from home more or less all the time rather than try and go into the office. I went in two days a week instead of five days a week, and that helped because I found, even now driving is one of the things that really brings on the pain, and it's a very hard thing to understand unless you're familiar with pain cycles. If you do it one day it's fine you can cope with it, if you have to do something like that three days in a row it builds up and then takes quite a while to subside again, so it's a question of managing it really. I mean even now, nearly eight years later, if I overdo it I get really bad pain again, which is very distressing after all this time because you think you're over it and then it brings it all back again.
People took a variety of different approaches to managing their pain, including conventional pain killing medicines, complementary therapies, and learning to live with pain that could not be lessened. One woman found that using complementary therapies like reiki, and activities such as yoga and meditation, helped her. She had been experiencing ongoing pain after a hysterectomy to treat her cervical cancer, and also tried a TENS unit. Psychological counselling helped one person living past testicular cancer with pain management. He felt that talking to someone helped him understand and deal with how his body experienced pain. People with pain often took painkillers on a long-term basis. For instance, a woman living past ovarian cancer used fentanyl painkilling patches which she felt ‘kept her pain very well under control’.
He found that psychological counselling helped him manage his pain caused by nerve damage from surgery for testicular cancer.
He found that psychological counselling helped him manage his pain caused by nerve damage from surgery for testicular cancer.
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Yeah you get, I was offered psychological counselling for, not necessarily the worry of it all, because I had two surgeries on the same area it has left me with an aggravation of that area which is caused by the nerves that they cut in that area, have not died off. It's very similar to somebody maybe who has, like, a limb removed, it's like a phantom limb syndrome, that the nerves that were going to that limb have stayed active, where for me it's the nerves that were cut during the surgery have not died off and have actually stayed active, and I do get a lot of aggravation that I feel all of the time basically, which is called a neuroma. Now I was referred to a psychologist to help me deal with that, it's basically pain management. Now what that psychologist helps you do is to help you understand the thought processes involved in how your body experiences pain. Because if you’re feeling like I am all the time in minor aggravation in an area, your subconscious is always focussed on that aggravation that you're feeling, and it's like somebody saying to you, "I'm about to give you an injection, you'll feel some, a small amount of discomfort." Instantly you will feel that discomfort 20 times more severely than if they'd just given you the injection and not told you. It's very, very similar, and the psychologist I spoke to basically she helped me understand and re-learn almost how to experience pain and to be able to try and shut pain out in many ways.
So that was helpful?
I found it quite helpful yeah.
A TENS unit, acupuncture and other complementary therapies helped her manage the pain she has experienced since having a hysterectomy to treat her cervical cancer.
A TENS unit, acupuncture and other complementary therapies helped her manage the pain she has experienced since having a hysterectomy to treat her cervical cancer.
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Whereabouts is the pain?
It's in the operation area, because the hysterectomy I had I've got a horizontal scar but it feels like it's vertical, so I just assume that a lot of the surgery was done that way on the interior, sort of the stomach wall and that sort of thing. And I've had it all investigated and I've been back to two different pain clinics, had various investigations done. Short of further surgery, the only thing left really is to have a laparoscopy to find out if anything was going on inside, which I didn't want to have further surgery as there was no guarantee it would make any difference, I just didn't fancy that at all. It was probably, the pain is probably caused by adhesions and scar tissue and/or scar tissue, apparently it's not uncommon, but of course you don't realise that until afterwards. It's not, not everybody will get it by any means. I've spoken to lots of women who don't feel a thing, they're fine. So I'm just unlucky basically.
So how did it make you want to change your life?
I think one thing I did while I was on sick leave the second time was I started looking at complementary therapies. The first thing I did was went to have acupuncture, specifically for the pain, which I went to see somebody who was very local, which was great because it's close, and he's a GP as well, so I had the confidence in his judgement. I'm not implying that other acupuncturists aren't, you know, very good and very well trained, but that’s how it helped me. And it did actually seem to help the pain, and it wasn't, sometimes acupuncture can have a very good effect for back pain and things very quickly but my pain it didn't do that, it was too complicated I think. But it did help me to reduce the painkillers, and I think if any sort of complementary treatment is holistic, and it's helped me on other levels as well I think emotionally and that sort of thing, and of course one of the reasons why this person doesn't work full-time as a GP is he likes to have time with his patients, and you're sort of lying there for an hour or so having your treatment and you talk to him as well about all sorts of things, and that has a great benefit in itself I think. And since then I've looked into all sorts of other types of complementary therapy, herbal therapies and things like Bach Flower remedies, and I've started learning Reiki myself, I went to a Reiki healer who helped a lot and I started learning that, and things like meditation and relaxation and the whole sort of thing that can help people really.
You've found that helpful?
I have very, yes.
In what way?
I think it's, a lot of it is sort of stepping back from things a bit and being able to, I mean meditation is helpful for pain anyway because you can remove yourself from it a bit, and it's all the thing, you know, about trying to still the mind and take yourself off to somewhere else and relax, because when you're in pain you don't relax at all very often, you realise when you start doing something like that that you've been tense for months on end almost. You don't even relax at night if you're in pain.
Last reviewed October 2018.
Last updated August 2015.
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