‘My previous experience of the NI Hospice was when my brother died, but my time there was like being in a five star hotel and helped me get well enough to go home again’
Receiving a diagnosis of terminal illness can be the most daunting moment of anyone's life. To mark Hospice Care Week, Stephanie Bell talks to a local woman Ursula Burns about her experience and how her life has been enhanced by care at the Northern Ireland Hospice
It is a sad reality of the nature of its service that rarely - if ever - a person benefiting from hospice care gets to talk in detail about what it means to them. But in what is a first for the Northern Ireland Hospice to mark Hospice Care Week, which runs from October 9-15, a Belfast solicitor today talks about her experience to highlight that there is much more to the service than end of life care.
Ursula Burns (58), who has two grown up daughters, was diagnosed on Christmas Eve 2014 with ovarian cancer.
It wasn't until the summer of 2016 that she was told her illness was terminal.
Ursula bravely carried on and managed to live a normal quality of life until this summer when she was first admitted to hospice for two weeks to help manage her symptoms and again last month to be treated for a severe infection.
In an inspiring and candid piece she describes what it is like to live with a terminal illness and the difference it has made knowing hospice care is there for her.
She says: "I'd be amazed if the word hospice did not conjure up in the vast majority of people's minds - a place to die - a place to leave in a box.
"Certainly I'd never really heard of hospices, especially NI Hospice, until 1998 when my oldest brother, Gerard, developed a brain tumour at the age of 50.
"He was married to Bridget and had a beautiful daughter, Jennifer. He drove HGV lorries for a living, all over the UK.
"The problem started with him getting frequent déjà vu images and I suppose we just put it down to the aging process.
"1999 was a horrible year for him and the whole family. He had brain surgery, where they removed cancerous and non-cancerous cells.
"A move to Northern Ireland Hospice was flagged up to him and the family at that stage and we were devastated.
"How long had he got? How would this tumour affect him?
"I remember the day he was transferred to NI Hospice. In those days I found it a scary place - seeing death in everyone's eyes. There were four, maybe even six beds in each ward.
"Gerard died peacefully on August 1, 1999, and since then NI Hospice has been my one and only charity - Christmas cards, furniture, funds. They all found their way there first.
"I was diagnosed on Christmas Eve 2014 with ovarian cancer, which reoccurred.
"The first indication that all was not well was when I got post menopausal bleeding and went to my GP.
"She thought it was unusual and wanted to refer me but I decided to go and see a consultant I know privately, the next day. He too was concerned and suggested a hysterectomy.
"I had the operation done privately about two weeks before Christmas and went back to see him on Christmas Eve, 2014.
"He told me he had found cancer in my ovaries and even though he had taken it all away, he could not be sure there were not more cells floating around my body. He explained that there was a 30% risk I had more and that I needed chemotherapy.
"I had read about chemo and I didn't want to go down that road and I thought about it all over Christmas and decided in the end that I would have it.
"I started chemo in March 2015 and it was very bad. I think I must have had every side-effect going and I took an allergic reaction during the very first treatment.
"The doctors worked to alter the dosage and change the treatments but the same thing happened for the first three treatments. Each time afterwards I was so sick I ended up in hospital for a week. After three I couldn't take it anymore and decided I would take my chances as I couldn't put my body through it again.
"I tried to go back to work after that on a part-time basis as I like to keep busy and wanted to get back to normal.
"About a year later I was in the office when I had more bleeding and I went straight to the cancer centre.
"I had a biopsy taken and was told the cancer was back and that there was no cure. I was offered radiotherapy for six weeks.
"That was hard. The most difficult bit for me was that they couldn't say how long I had.
"I'm one of those people who needs to know everything and I asked 'how long have I got? Will I see Christmas?' and they just told me to go out and be one of those ladies who lunches and that I should see Christmas no problem.
"I started radiotherapy and although it was a big commitment every day and very draining, I had no pain and it was nothing compared to chemo.
"I just tried to get my head around it. I am a doer so I sat down and put all my finances in order. I also organised my funeral down to the last detail, even the wording of the death notice for the paper.
"I didn't want my girls to have to worry about anything like that and I wanted to take the burden away from them.
"I got through Christmas and kind of fell apart in the January. I got amazing counselling from Action Cancer. I can't begin to tell you how good that was and that got me back to feeling like myself again.
"At the start of this summer I was feeling at a bit of a loss because all my treatment had finished and I wasn't feeling myself again and I went to my GP and asked her what I should do if I was dying.
"She appointed a palliative care NI Hospice nurse and we gradually built up a trusting and personal relationship. She was there for me whenever I needed her.
"Weirdly, she is also called Ursula.
"At times I felt she knew me better than I knew myself. She included my two daughters in all discussions which is what we wanted.
"I was mobile (just) and pain-free, but in August I started to feel overwhelmed, both physically and emotionally.
"I started to look up the NI Hospice website for advice and it was only then that I realised that, yes, people do die there but the services provided go far beyond end of life care.
"I read about symptom management and pain management, with the intention that I would be helped back home into the community and to continue living. No box for me!
"Ursula suggested a stay at the hospice as she and I felt things were getting too much for me.
"I embraced the notion at once. When I went in it couldn't have been more different from how I remember it when my brother was there.
"I have a big bedroom at home but the room they gave me was twice the side with its own courtyard outside with plants and its own wet room bathroom. It was like a five-star hotel.
"I had the most amazing care from everyone and my consultant was incredible.
"After two weeks I was able to return home, go to Marks & Spencer's and out to lunch with friends.
"I got myself back to being 'me'. My re-admission to the hospice a few weeks ago was mostly without my knowledge as I was so poorly with an infection I had developed.
"I was very ill and thankfully, I have no memory of that 24-36 hour period, while the doctors were working away on me, constantly trying to stabilise me. At one stage they feared they would not get me back which was very traumatic for my daughters.
"Obviously I'm out the other side now and I've been home for two weeks. The day I was leaving hospice I got to meet Eamonn Holmes who is the new ambassador for the hospice. My brother went to school with him and when he walked into the room I was gobsmacked.
He was much taller and more handsome than I thought.
"We joked and talked for about 15 minutes about growing up here and school and he was just lovely.
"Coming home I've had to accept that things are not going to be the way they were. I've started to fall and have had six falls in the past few weeks so I've had to accept that I cannot go upstairs anymore which is hard.
"I've had to get a bed put downstairs and a shower but it doesn't feel like a sick house which is the way I want it.
"I do know that if it had not been for my palliative nurse and the fantastic palliative doctors and nurses in the hospice, I would not be talking about this today. I also have a close circle of male friends from university and two good girlfriends and along with my family I couldn't have got through the past three years without them.
"I don't know how long I have got left. I don't know if I will be here for Christmas but I can't control that. There is a time to be born and a time to die and I can't do anything about that.
"Live everyday as if it's your last, but remember the NI Hospice ethos is to get you as well as you can be so that your quality of life becomes the most important thing.
"Thank you NI Hospice for taking away my fear and stabilising my symptoms so that I can continue to live."
How the NI Hospice supports patients
The Northern Ireland Hospice offers specialist respite, symptom management and end of life care to over 3,500 babies, children and adults each year.
Consultant in Palliative Medicine at the Hospice Dr Clare White says that while there is a common belief that patients are only admitted to a hospice in the later stage of their illness, many are admitted as inpatients to receive support for intensive symptom management.
She says: “Our goal is to help people with a life-limiting illness live as well as possible, with dignity and choice, until the end of their life. For many patients, hospice support begins at an early stage, with our specialist staff helping to manage pain and other symptoms such as nausea, vomiting and shortness of breath.
“This support is most commonly offered in the home. However, depending on individual needs, complexity of symptoms and patient preference, it can also be offered in our inpatient unit on Somerton Road in Belfast.”