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Read stories DonateThis stay, however, they have a bay of four beds all to themselves, which sparked a conversation between them:
Claire: “It utterly horrifies me that hospices don’t have the funding. We're sitting in an empty bay. This shouldn't be happening, should it? When you're in the situation we’re in, it's terrifying, absolutely terrifying.
“A week ago, we were at home and you were bleeding quite heavily, you lost a lot of blood, and we were able to call SinglePoint. And that call enabled us to get to the right place in a far less stressful way. You would have just gone downhill even more if I’d taken you to A&E and we’d sat there for 8 hours. But nurse Jo enabled us to get the ambulance quickly and so made a terrifying situation less frightening.
“Thinking about SinglePoint, we wouldn't have managed as well at home without that advice. When you're sitting at home as a non-medic, the sole carer, completely responsible for somebody, and it's 3 o’clock in the morning, where are you going to get that advice from? How else are you going to get that support if somebody is in pain at 3 o’clock in the morning with a highly aggressive cancer that you know is progressing rapidly; what are you going to do, sit and wait till the morning?”
Bradley: “For sure a week ago I would have died; I would have died two and a half years ago without the hospice.”
Claire: “It surprised us that people are frightened of the hospice. Before Bradley was ill, I’d not had any contact with the hospice, except the day your mum was in here. She was admitted and died later that evening.
Bradley in an empty bay at St Helena Hospice
"But Bradley was diagnosed very, very suddenly in A&E, so we just went from life being normal to you’re going to die in three months. So we were instantly thrust into the world of hospice and palliative care. We saw Emma, who was our community nurse from the hospice, about two weeks afterwards, and recently our CNS Hannah. From that point onwards, we were with the hospice as well as Bradley actually having (it turned out to be), a lot of palliative treatment for the cancer.
“We very much want to say that this is the hospice and the hospital in partnership. The hospital has saved you six times; you've had six life or death crises in three years. The hospital has been amazing, but without the hospice as well, for sure, you would have faded away a lot sooner than you have. You can have systemic anti-cancer treatment, palliative care and support from hospice alongside each other. This has really been the case in this last month; they are not mutually exclusive.
“What surprised me along the way, I've met other carers who are part of a pancreatic cancer support group whose loved ones were afraid to engage with hospice care, or were even not referred until the the very end. And that naively shocked me because I just assumed…”
Bradley: “Yeah, we were very engaged with the hospice from the beginning. We just thought yes to everything because it's being offered. Like Claire, I was surprised how many people do not want it or are very fearful of it.”
Claire: “I would say the difference when you were admitted here on Friday, I'm not exaggerating, within hours you were becoming a different person. You went from really not being able to eat properly at all, to having a full English breakfast on Saturday morning. You just think, what is it that's making that difference? Is it the attentive care, is it the far less stressful environment?
Bradley: “Well, the first time I came here I’d got two and a half days to live. It was our first big experience of dying within those limits; they said I was going to die, within the three month limit that is so often the case with pancreatic cancer.
"So that was shocking. And of course, we got here and this was the place to be. They weren't sure whether I’d even survive the transfer here. But then, of course, I’ve lived another two and a half years since.
“I mean, just the complementary therapies here, marvellous. I was having a hand massage this morning. Always heavenly, lovely. It's all helped.”
Claire: “And we have the marvellous Reverend Jacquie who volunteers as a chaplain (spiritual care) who's been coming to visit us and has always been to see you when you've been an inpatient. So all of these things, the counselling, the family support, have been helpful.
“We've been told so many times now that you are going to die, because of all the crises we’ve had. We almost just think, oh yes, okay. But it never stops being terrifying.
"If we had not engaged with good palliative care services from the get go, I can't imagine how much worse the last few days would have been.
“And it has been hellish. We are adaptable and we've worked really hard at being resilient. We try to be really proactive all the time. I gave up my job to care for you and I’m effectively your care co-ordinator.
Claire and Bradley with their dog at St Helena Hospice
"We've been exceptionally lucky that we've been able to focus on keeping you alive with all the amazing help from all of the services that we talked about, but I can't imagine what that journey would have been like without St Helena, I really cannot imagine.
“It is very hard to acknowledge that a disease is terminal, that an illness is not curable, but if on some level you can get on board with that and get involved in these services as early as possible, it will make the world of difference.
“You have been able to get well here; we know you may die here, and you may die here soon. But you have got well here on more than one occasion. I would so very much want people to realise that patients can walk out of here better than when they came in.
“So I think for me one of the really key things, as we're sitting here in this empty bay, is the symbiotic relationship between hospices and hospitals. We understand that hospices do lots of different things, and the charitable funding that they work so hard to generate enables them to do creative things. But the core clinical services that are saving your life at the moment need to be properly funded, don’t they? These are a core clinical service.
“And we are the lucky ones. We are the lucky ones. But I know we have just given up our lives to focus on this, and we've been dogged and persistent, adaptable, polite and grateful. This is a really important thing, because it makes your experience far more positive than it might otherwise be.
“We've gone from living a normal life to a completely abnormal life, with a bit of stability in the middle. A month or so ago, we were probably living month to month; we just live hour to hour now, and it messes with your head. We present a good front, we try to be resilient, but it's really, really hard. It's not about being positive, it's about being realistic; we just say that we have to dig in more and more, and be grateful, always be grateful, for all the good stuff that comes your way.
“We really want our story to say: ‘support your local hospice; Government, please think about how you fund this; don’t be frightened of palliative care’. And also, ‘please don't write people off with hideous cancers, like Bradley, because he could so easily have been written off so many times. You really have to prove yourself with pancreatic cancer because the treatment options are so limited. It was only after six months and nearly dying four times that I think people thought okay, we can throw a bit more at this bloke.
“And the hospice has been a massive part of that.”
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