On-going pain and discomfort following treatment for cancer is something which was discussed by a number of participants in this study. While for the most part this seemed to improve with time, the following quotes show that it can become a long term concern for patients:
Lucy Int 1 –“I was getting pains and discomfort again in the stomach and, I…
I wasn’t sure if that was a sign so I rang up and she said we’ll get you back in to see (consultant) and we’ll have you know see what he says so he sent me for
another scan and that was fine”
Lucy Int 2 - “I just erm focus in on, I get windy pains here, I get crampy pains
here, I mean they’ve said I can get pains from the stent… but I mean the flu didn’t help, that totally felled me and made me think oh my God you know, I
had nothing, I had no energy for nothing, I just feel blunt, I don’t get a… I used
to get a buzz about doing stuff”
The extract from Lucy’s first interview emphasises that one of the consequences of
experiencing pain and discomfort after cancer treatment is that it may lead to thoughts of cancer recurrence. While Lucy does not state that she thought the cancer had returned, her fear of recurrence has been highlighted earlier in this thesis. Furthermore when she stated that she was not sure if this was a sign, followed by contacting her consultant to have a scan, it would appear that the pain she felt contributed to her fear of recurrence and led to seeking reassurance from her consultant. The second interview highlights that Lucy was still suffering from feelings of pain and discomfort, which did not seem to improve with time. The listing of symptoms in the above quote seems to suggest that Lucy felt that things were starting to get on top of her, as the symptoms she was experiencing began to accumulate. This seemed to be having an effect on her mood when she said ‘I used to get a
buzz out of doing stuff’ which would suggest that she was no longer experiencing this
buzz, or level of enjoyment out of life. This was also evident in the first interview when she said that she had felt that she was going along side of life rather than living it, although those feelings had started to fade, the impact of finding another tumour may have brought
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these back into focus. Lucy has expressed fear that she is going to die because of her cancer, and facing the prospect having cancer for a third time may be contributing to her physical symptoms and the feeling that she has no energy.
Similarly to Lucy, the quotes from Geoff below suggests the experiences of pain and discomfort can lead a patient to believe that they are experiencing symptoms of cancer recurrence:
Geoff Int 1 - “I’d had a lot of problems two days before it because I’d been
given a lot of pain killers an nobody bothered telling us erm that they would make you constipated. Now the nature of the operation they should of really given us something to counteract that, woke up on the Wednesday morning and the pain was incredible and the wound burst and there was a lot of gunge
coming out and down me leg and everything and a… a… I lay on the bed and
the immediate thought I had was I was gonna die”
Geoff Int 2 – “Sometimes yeah er sometimes it reminds you that, yeah, not so
much now, but certainly the first year or two it did erm you could turn the
wrong way or you could you know do something and it, it reminds you that it’s
there. That’s the, the sort of erm, twinges where its, more in the stomach”
While with Lucy, an association between pain and discomfort and fear of recurrence begins to emerge, the above quotes from Geoff suggest that the association may be related to the severity and context of the pain. While in some cases a prolonged experience of aches and pains may be associated with recurrence, a single experience of severe pain could even lead to thoughts of death. This is evident in the first quote from Geoff, which was discussed earlier in the results section, where a single episode of extreme pain caused Geoff to believe that he was dying. In the second interview while Geoff was still experiencing pain, this did not seem to be as severe, describing them as twinge. This may be contributing to his fear of recurrence, which was brought on by the experience of similar symptoms which lead to his initial diagnosis. When Geoff stated that the aches, ‘reminds you that it’s there’ this suggests that his mind comes back to cancer whenever he experiences these twinges, prolonged exposure to which may have led him to believe that his cancer had recurred.
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While he discussed that he did not experience these twinges often, he did say that he had had them for the first couple of years after his surgery. If they have always made him think his cancer had returned then this would suggest that Geoff had been experiencing fear of recurrence for much longer than he had stated. However, he may not have associated these pains with recurrence until he had the experience of sensations which led him to believe that his cancer had recurred. This may have caused him to re-evaluate these aches and twinges that he had been experiencing for so long. This would again suggest that fear of recurrence is not a stable construct, and that a number of factors can lead to a patient being concerned that their cancer will recur.
However, feelings of pain and discomfort were not necessarily a permanent consequence of surgery for cancer, and as time goes on the discomfort may ease, as is evidenced in the following quotes:
John Int 1 – “Just for extra painkillers and I’m pretty much got them still and
I’m only pretty much taking them if I’m in the car for any length of time, if I’m sitting for like half an hour at a time, it’s basically just like sitting on a golf ball rather than being uncomfortable eh uncomfortable rather than sore”
John Int 2 - “yeah I’ve been brilliant, like I say working down in Darlington,
like 35-40 miles each day, each way and it’s absolutely spot on, we, went down
to (pause), where’d we go, great Yarmouth on the bus on like national holidays sat for like 6 hours on a bus and that didn’t bother me”
Paul Int 1 - “Even through the night it was really good if I were... in a bit of
pain I’d sht gives a tablet just get us a paracetamol and knock us back to sleep and I was alright. Mhmm”
In the first interview John described feelings of discomfort in his buttocks and lower back whenever he sat down for prolonged periods of time, especially in the car. He likened this to a feeling of sitting on a golf ball which he said was not painful but uncomfortable. As with the previous sub-theme where John was using irrigation to manage his stoma with relation to his working life, the results presented in this sub-theme suggest that he was using medication to manage these feelings of discomfort. However, while John expressed
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that he did not find the experience painful, he seemed to be saving his painkillers for when he needed to make long journeys in the car. This would suggest that he is experiencing some level of pain to require him to take painkillers to manage it. A transition is evident in
John’s experience of pain and discomfort in the six months between interviews when
looking at the second quote. Due to his new job he was now spending a significant amount of time in the car, which was originally the source of his discomfort, but he seemed to be coping well with the prolonged periods of time sitting down. The change in his experience of discomfort is highlighted when he talked about spending six hours on a bus trip, something which would have been inconceivable six months ago. This would suggest that the discomfort he felt was only a temporary consequence of his cancer surgery and may have been linked to his wound healing. Furthermore, while data from only one interview was collected from Paul, the above quote, like the examples from John, does begin to show that aches and pains may begin to ease off as a patient moves through their cancer journey. In his quote he discussed being in a bit of pain after his operation which was managed by the clinical team using painkillers. However, he made no mention of aches and pains or twinges, common to most other participants in this sample, at any time after his initial surgery, although he did mention that he found his work to be tiring him out more now than it had before.
Another area where cancer can affect patients after their treatment is that it can leave them feeling less physically fit than they used to; this is highlighted in the quotes below:
Geoff Int 1 –“Erm, the one thing that I’ve noticed is, th… that I never got back
was the stamina or strength that I had... probably me fittest was actually when I had the tumour which sounds stupid er but at the time I was going to the gym
and I was like er… had a feeling of wellbeing and I was actually feeling quite fit for… for me at that time... I tried to go back to the gym about a year later
and I never got it back again I’ve never got the stamina levels… I get exhausted very, I don’t think I’ll ever get back to the levels I was, stamina wise”
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Geoff Int 2 – “I was also a bit lethargic as well, feeling tired all of the time,
physically, but I have been generally since I was ill anyway, I’ve never had the
stamina that I’ve had.”
The first quote highlights that Geoff noticed a change in his physical fitness since he had his operation, describing that while he felt at his fittest just before he was diagnosed, he had never recovered this level of stamina. While he did attempt to regain his fitness by going to the gym, he described feeling exhausted by the physical excretion, and stopped going. However, given that he waited a year before returning to the gym, it is understandable that his level of fitness would have dropped, and perhaps had he continued to push himself he may have been able to regain some degree of fitness. In the second interview, six months later, Geoff still felt that his stamina levels had never returned. This would suggest that feeling lethargic is a long term consequence of his surgery, and in order to avoid feeling exhausted he continued his avoidance of physical exertion. Feelings of fatigue during cancer treatment have been reported widely in the literature (Ream, Davidson & Evison, 2005; Thong et al, 2013) and patients can continue to feel fatigued long after they have completed treatment for cancer (Jacobson & Stein, 1999; Jensen, Houborg, Norager, Henriksen, & Laurberg, 2001). Feeling less physically fit after treatment for cancer was a common experience, and was also discussed by Paul, Lindsay, and Rob:
Paul Int 1 - “When I got back to work, I was tired at first, first couple of
weeks”
Lindsay Int 1 - “It’s slowed us down more, it’s slowed me down after the lung
operation, but the bowel operation slowed us down even more”
Rob Int 1 –“I mean walking, 5 minute walk to the paper shop to get a paper, I
was absolutely wrecked”
Unlike the other participants, Rob began to regain a feeling of physical well-being, as discussed in the recovery sub-theme, after increasing his level of physical activity. This
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suggests that an exercise intervention may help participants overcome these feelings of exhaustion after physically exerting themselves.
In light of the results outlined above it would appear that physical complaints such as pain and discomfort, and feelings of lethargy, are common amongst people living with and beyond cancer. For the majority of participants, these symptoms did not appear to improve over time, as Lucy and Geoff both discussed continued feelings of pain in both of their interviews. Furthermore, Geoff and Lindsay discussed feeling lethargic in both interviews. However, this was not the case for everyone, as while John experienced pain related to his surgery in the first interview, by the time of the second interview the pain had stopped. Likewise, Rob who had expressed feeling physically tired if he walked for five minutes to the shop in the first interview, had started exercising more and felt physically fitter by the time of the second interview. There appears to be a strong association between experience of pain and discomfort, and fear of recurrence, however the nature of this relationship is not clear. It may be that pain and discomfort can lead to fears of recurrence which seems to be the case with Lucy. However, with Geoff the relationship may be the other way around, as even though he has experienced twinges and pains for more than two years, he has only recently started to think of them in terms of recurrence. This is possibly related to the experience of what he thought were symptoms of recurrence, highlighting that the relationships between pain and discomfort and fear of recurrence may be cyclical. For other patients, who did not explicitly express fears of recurrence, their experience of pain which they discussed in the first interview, was not a concern that was repeated in the second one, suggesting that these pains may have eased off in the intervening period.
The results here support the evidence in the literature that not all patients will experience cancer related pain with prevalence being reported by between 42%-56% of patients (Breivik et al, 2009; MacFarlane et al, 2012; Miaskowski & Dibble, 1995). Furthermore
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the evidence presented by Breivik et al (2009) suggests that the experience of pain for cancer patients is something which is on-going, which was the case for Lucy and Geoff. Additionally, a loss of stamina following treatment for cancer has also been discussed in the literature, with Cella, Davis, Breitbart, and Curt (2001) reporting that on-going cancer related fatigue following treatment for cancer was reported by 33% of participants. The experience of Geoff, and Lindsay, reported above would support this, as they reported feeling a loss of stamina consistently across both interviews. However, Rob seemed to regain his stamina following a concerted effort to improve his diet, and increase his levels of physical activity. This suggests that a physical exercise intervention may help patients overcome feelings of fatigue or loss of stamina which could result in reduced fear of recurrence and subsequently, reduced future disorientation.