What it's really like being in a hospice

12 Jun 2017

Back in 2012, at the age of 38, Carl Denning was told he had pancreatic cancer and that the odds of survival were 5%. Now 43, he has managed to do the impossible and beat his cancer five times. At the end of May, he moved into our Sue Ryder Wheatfields Hospice in Leeds. These are his words, taken from his own online diary entries.

It has been a difficult time.

I woke up, at home, during the night, and I knew we had to call the ambulance. We do have a car and we could have driven in to the hospital, but something was telling me we needed to add more emergency to the situation.

I am unable to tell you what happened or what was happening. But, if I'm honest, I thought I was on my way out there and then.

When cancer grows, it seems that the pain killers like morphine act in a different way and I could have overdosed on morphine. There was a lot more happening than that; my body has swelled and my legs are so massive I am now unable to walk or stand.

The doctors and nurses were amazing, yet again. I don’t want to embarrass anyone but a friend of mine – a nurse who I met during this experience – came in to the hospital room to leave me a croissant each morning.

For me, the reassurance came when the doctor said they wanted to put a semi-permanent drain on my liver. I thought: "If they’re doing this then they haven’t given up on me", so I should not give up on myself.

A wall of strength

The night before I had a small surgery, I decided to catch up on the news and I saw what has been happening in Manchester. I could not take it in. I had to turn the TV off.

The morning after, the doctors and nurses, yet again, showed me their professionalism and fitted me in to an already busy schedule simply because they knew I was in pain. Throughout the day, doctors and nurses, friends and family surrounded me; a wall of strength around me.

That night, I decided to face the TV again and see what had happened. A choir was outside Manchester Library singing the Oasis song Don’t Look Back in Anger.

The TV showed all different types of people – all different types of religions, beliefs, skin colours – coming together and giving each other support. It was love interweaved in a truly tragic moment, and it showed how love will always win.

Moving into Wheatfields

It was then that my partner Rob and I talked about me going into a hospice, rather than back home. We knew I had to have more help. It was never in my plans, but I am so glad I did.

I had a view of hospices that almost mirrored an old people’s home. This viewpoint was wrong.

The hospice is – unbelievably – run on charitable income, 60% of which is donations. If you have ever donated towards Wheatfields and Sue Ryder, I just want to say a very big thank you. They are really looking after me.

I thought a hospice was a place to spend your last final days, but they are looking at each of my problems and trying to deal with each of them. For instance, I'm having problems seeing the keyboard right now; my eye sight has become quite blurred.

I have been here almost a week now, and I’m gradually, slowly building myself up with a lot of help. I’ve been getting free complementary therapy. Does it work? Well, it frees me of pain most days.

My hospice experience

The full service Wheatfields offers is amazing. I press a magic button and someone comes to help me go to the toilet; I press it again and a nurse comes with painkillers; I press again and I get advice from one of the brilliant doctors.

I have cooks at my beck and call making food for me, the grounds are just lovely to look at, and I am quite getting used to this…

I have ups and downs daily, almost on the hour, but I feel very privileged here.

While there is so much badness in the world, which you can see on the news, I also see a lot of goodness here at the hospice, right before my eyes.

The doctors and nurses have so much time for me. Two weeks ago, I questioned if that was going to be my last night. Now, with the team in the hospice successfully managing my pain, we are all planning a day trip out.

My biggest realisation was this is not a place to die. This is a place to live.

Visit Carl’s JustGiving page

Edit: Carl sadly passed away during the weekend of 24th June 2017, but his family have asked that his blog post remains so that his legacy lives on to inspire others.

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Sue Ryder Wheatfields Hospice
Sue Ryder Wheatfields Hospice is in Headingley, Leeds. We provide expert palliative care. We support you when you’re living with a life-limiting condition, and also help your loved ones and family.
A woman sits on the edge of a hospice bed and embraces the male patient in a comforting gesture. Their heads are together.
End-of-life care
We provide end-of-life care and support from our specialist centres and in people's homes.