“It’s Always Been a Second Class Cancer”: An Exploration of the Experiences and Journeys of Bereaved Family Carers of People with Sarcoma
Abstract
:Simple Summary
Abstract
1. Introduction
1.1. Sarcomas
1.2. Delays in Diagnosis and Treatment
1.3. Carer Distress
1.4. Aim
2. Materials and Methods
3. Results
3.1. Beginning the Journey
3.1.1. Experiencing Symptoms
“… she started developing pain in her leg, just above her knee, and I took her to the doctor’s three times” (BC10)
“… the physio also thought it was some sort of groin strain so that he gave him exercises to do …” (BC05)
3.1.2. Receiving a Diagnosis
3.2. Moving through Treatment
3.2.1. Experiencing a Lack of Information
3.2.2. Needing Information
“I think number one [challenge] was knowing too much because I knew the likelihood of what was going on. I’d come across people who’d had amputations as a result of Sarcoma, and I happened to know a family who had had Ewing’s Sarcoma … when I was told it was Ewing’s Sarcoma I knew exactly what we were in for.” (BC01)
3.2.3. Sacrificing Wellbeing
3.3. Transitioning to Palliative Care
3.3.1. Communicating with Health Professionals
“… they turned up later that day and just in front of him started going on about end-of-life care … I was really angry and I [took] her outside and I said, “Why are you coming out with this in front of him?” and she said, “Oh I thought you knew. The hospital’s meant to let you know that’s what we’re here for. We’re here for palliative care”. Now when you hear palliative, you think that’s sort of the final stages and we just didn’t think it was going to be that bad or that quick or anything like that. And she said, “That’s what we’re here for. They should have warned you,”
3.3.2. Accepting Palliative Care
“We went for radiation and that was just agonising and then we brought him home and it even got to the point where his care was beyond our actual realms of being able to do. So we had to take him back to the hospital and luckily they were able to give him a bed at the Palliative Care side of it”. (BC15).
3.3.3. Dying in Comfort
“She was in great pain so it wasn’t about how can we extend this, how can we do that? It was really quality of life, those last few weeks, make sure she was pain-free and just doing what we could to comfort her.” (BC14)
“Because her bowel was blocked, the tubes into her stomach, to drain her stomach continually were continually getting blocked … So sometimes a nurse wouldn’t come so we would do that ourselves … and it’s not very nice. And even though they’re there—the last three days, it wasn’t [her]”. BC13.
“There was [one nurse] on that night … [the nurse] came out twice and at one point gave him a needle with morphine in it but [they] kind of jabbed it in and Clive just screamed. He [the nurse] wasn’t gentle.” BC05
“He [Doctor] said, “So you discussed end-of-life care?” And he was just matter of fact. I honestly just wanted to cry. I was just standing at the kitchen bench … he was just rattling off these questions and I just thought, you are the most heartless person I’ve ever come across in my life.”
3.3.4. Dying in Place of Choice
“He was in a lot of pain and getting onto the stretcher, into the ambulance, all the rest of it. He said, “Why do I need to go home?” I said, “Well, you don’t need to go home.” And home would have been here, he couldn’t have got home to the farm … He said, “I think I’ll just stay here.” So he did make the choice and at that point, I think he made the choice that he’d had enough and that was it, he wasn’t going to fight anymore.” (BC03).
“Her bowel was blocked … … she had three lots of tubes going in and out so that always needed management. The kids wanted to take her home but I said, ‘Look, she needs too much actual medical care to do that’” (BC13).
“All his brothers and sisters came around … We all slept—we got a sleeping bag and slept in the lounge room [laughs] … It was one of the things that stood out most in my mind from that period, that we all just sort of hung out with him for the last night.”
3.4. Experiencing Bereavement
3.4.1. Feelings of Grief
3.4.2. Gaining Support
“… some sort of solidarity with someone” … … when I met with the other parents, yes, I felt comforted because even though there was no answer, we were all in the same boat and we could just share experiences and just provide support to each other really.” (BC10)
“… there was a chap there and his wife had her cancer for five years … he said, “I know where you are and I know what you’re going through. You will get through it.” (BC16).
“Actually … one of my good friend’s mother … she lost her brother to sarcoma; he had soft tissue sarcoma as well. So I guess like when you meet someone and you realise they’ve had a similar experience or story … you just share the weight together.”
3.4.3. Reflecting on the Journey
“I sometimes really knock myself up a little bit about should I have done more research? Should I have investigated more? Should we have taken him to America or Melbourne where there’s more things? Should I have pushed that more?” (BC03)
“The doctor was suggesting chemo but, do you … go through that now when you’re probably, possibly won’t work and this is the last months of your life … in hindsight now I think maybe we should have tried it.” (BC02).
“It’s a bit like Stockholm Syndrome. You’re kind of “that’s been my whole life for two and a half years and you come to the end, you go home, she dies and there’s nothing … you’re left to pick up the pieces yourself really.” (BC10)
“I’ve had conversations with them that I never dreamt I would. If anything good has come out of it, it’s the close relationship I have with them.”
“We did become closer and that closeness was very useful moving forward after [family member] died and accommodating the loss which is to learn to live with it.” (BC14).
“As I put it now, it’s always seen as a second class cancer. You’re not important enough to warrant this, you’re not important enough to warrant that, but no cancer is that unimportant. You can’t say because you’ve got a breast cancer that’s more important …” (BC01)
4. Discussion
5. Limitations
6. Directions for Future Research
7. Conclusions
Supplementary Materials
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
References
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Characteristic | Number |
---|---|
Age (Years) | - |
Mean (SD; range) | 52 (SD = 13.50, Min = 21, Max = 66) |
Sex (Years) | |
Male | 7 |
Female | 9 |
Duration as a carer (months) | - |
Mean (SD; range) | 25 (SD = 13.06; Min = 4, Max = 52) |
Time since death (months) | - |
Mean (SD; range) | 51 (SD = 31.72, Min = 3, Max = 99) |
Relationship to patient | - |
Mother | 6 |
Father | 3 |
Husband or male partner | 3 |
Sister | 2 |
Brother | 1 |
Daughter | 1 |
Primary tumour location | - |
Pelvis | 8 |
Lower extremities | 6 |
Spine | 1 |
Torso | 1 |
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O’Connor, M.; Smith, G.; Pantaleo, A.; Haywood, D.; Weaver, R.; Halkett, G.K. “It’s Always Been a Second Class Cancer”: An Exploration of the Experiences and Journeys of Bereaved Family Carers of People with Sarcoma. Cancers 2021, 13, 2670. https://doi.org/10.3390/cancers13112670
O’Connor M, Smith G, Pantaleo A, Haywood D, Weaver R, Halkett GK. “It’s Always Been a Second Class Cancer”: An Exploration of the Experiences and Journeys of Bereaved Family Carers of People with Sarcoma. Cancers. 2021; 13(11):2670. https://doi.org/10.3390/cancers13112670
Chicago/Turabian StyleO’Connor, Moira, Greta Smith, Ashleigh Pantaleo, Darren Haywood, Rhys Weaver, and Georgia Kb Halkett. 2021. "“It’s Always Been a Second Class Cancer”: An Exploration of the Experiences and Journeys of Bereaved Family Carers of People with Sarcoma" Cancers 13, no. 11: 2670. https://doi.org/10.3390/cancers13112670