Category: Stories

Mick Orr, aged 65 and Amanda Orr, aged 56 from Cherry Willingham in Lincoln explain how St Barnabas Lincolnshire Hospice helped Mick return home following complications in his fight against cancer.

In April 2014, Amanda Orr, learned the devastating news that her husband, Mick Orr, had just a short time to live and as a result would be transferred to St Barnabas Lincolnshire Hospice inpatient unit, following a five-week hospital stay.

Only eleven months earlier Mick had been diagnosed with an aggressive and incurable form of prostate cancer which had led to him being hospitalised after collapsing at home.

Amanda recalled: “It was such a blow to think that this could be the end. That Mick was leaving me and our family after he had fought so hard. He underwent tests at the hospital which revealed he had suffered spinal cord compression from the secondary cancer in his bones and began a course of radiotherapy immediately.

“Unfortunately the spinal cord compression led to a host of complications and, over the course of five-weeks, his health deteriorated. It was then suggested we transfer to St Barnabas Lincolnshire Hospice.

“That was five-weeks ago and I am happy to say that Mick is still with us and he is in high spirits. People assume you come to the hospice to die but that is not always the case and certainly was not true for Mick. He has gone from strength to strength at St Barnabas Lincolnshire Hospice and, amazingly, he is being discharged next week to return home.”

During his stay at the eleven-bed inpatient unit on Nettleham Road in Lincoln Mick has received specialist patient-centred care that is bespoke to his needs.

Amanda said: “Mick has really benefited from the care of the specialist nurses and doctors at the hospice who are available to him twenty-four hours a day. Pain management has always been administered quickly and efficiently and this has ensured that Mick has remained pain free and comfortable. He has also had daily sessions with physiotherapists and complementary therapists who have worked to improve Mick’s mobility and to rehabilitate him.

“We have been so impressed with the quality of care Mick has received at the hospice; simply put it has been outstanding. The staff and volunteers here really go that extra mile, nothing is ever too much trouble, and all you have to do is ask. It really is home from home as best as it can be in this situation.”

Whilst at St Barnabas Lincolnshire Hospice Mick had a special ‘sail away’ party. Mick and his wife had been due to set sail on a cruise around Spain in mid May, as a late celebration for his 65th birthday, which had been postponed due to chemotherapy treatment.

Amanda said: “We had booked the cruise in December to celebrate Mick’s birthday alongside some of our closest friends. It was also an opportunity for Mick to say his final goodbye as it was likely that he wouldn’t see them again. However as the departure date grew nearer it became apparent that Mick wouldn’t be well enough to go, even after the progress he had made with St Barnabas.

“I wasn’t about to let this slip by unnoticed and with the help of our fabulous daughter Karen and the staff at the hospice we transformed his surroundings into a special ‘sail away’ party. We hung boat themed decorations around the ward, laid on champagne and canapés in the conservatory and set up a video link to our friends on-board the ship to toast them as they set sail.

“We had saved £600 spending money for the cruise but we have decided to donate it all to St Barnabas Lincolnshire Hospice as a way of repaying them for their first class care and support. Even our daughter’s dog was welcomed into the hospice to join in the various festivities. Just the week before we had all enjoyed an impromptu concert outside, from another patient and their band, and Mick was even able to be wheeled out onto the patio in his bed.”

Mick and Amanda have also utilised other services from St Barnabas Lincolnshire Hospice including welfare support and Advance Care Planning.

Amanda said: “Writing an Advance Care Plan was not easy or comfortable but it was necessary. It is a real comfort to know that when things get difficult Mick has already made decisions about the sort of care he is happy to receive and ultimately where he would like to be at the very end. This allowed Mick to take back some control over his cancer and leaves us free to enjoy the time we have left together.

“Mick’s continued positivity and the ethos at the hospice have taught us both that a cancer diagnosis doesn’t mean life has to just stop. If people could witness first hand what the hospice is really like, and how people with cancer and other terminal illnesses can be helped here, they wouldn’t hesitate to get behind their fundraising efforts. I have seen first hand how hospice care makes a remarkable difference.”

Amanda concludes: “It really is a cruel irony that St Barnabas Lincolnshire Hospice is reliant on charitable donations when it is such an integral part of our community.”

Since writing this article Mick suffered further complications and sadly passed away peacefully on Monday 2nd June 2014, pain free and in the company of his loving wife.

Lesley Markham, aged 63, from Lincoln was diagnosed with terminal liver cancer and was given just two years to live.

In 2012, Lesley underwent surgery to have her kidney removed after she was diagnosed with an aggressive form of cancer. Despite a successful operation, just five months later in April 2013, a routine scan revealed Lesley had secondary liver cancer and she received the devastating news that she had just one or two years left to live.

Lesley recalled: “I wasn’t expecting to receive good news but I never expected to hear the word ‘terminal’ either. But with seven lesions on my liver and an even larger growth on my renal vein there was nothing more they could do. If they were to operate it was highly likely that I’d bleed to death.

“With no other options available to me I began palliative chemotherapy which is slowing the growth of the lesions. After all, I’m not ready to die yet. I still have things I want to do, people I’d like to meet and places I’d like to see. Don’t get me wrong, I’ve lived a full life with no regrets but I’d like to have just a little more time.”

In May 2013, Lesley was introduced to St Barnabas Lincolnshire Hospice when she attended their Day Therapy Centre in Lincoln. It was with the help of the hospice that she began to plan for the end of her life.

Lesley said: “During my initial visit I began to work with the healthcare professionals to produce my Advanced Care Plan. In a nutshell this is a document that details what treatments I am happy to receive, where I would like to be cared for and ultimately where I would like to die.

“It really isn’t as morbid as it might sound and actually it has been a real comfort to me. I can be confident that, even if further down the line I am unable to communicate, my wishes will still be carried out. Having an Advanced Care Plan has taken away some of the uncertainty and has given me some control back.”

The Day Therapy Centre in Lincoln is one of eight across the county which specialise in providing care and support to people who are seriously ill and at the end of life.

“At first, when St Barnabas Lincolnshire Hospice was mentioned I couldn’t understand how they could help someone like me. I thought the hospice is for people who are dying isn’t it? I mean, I know I’m dying but I’m not bed ridden or anything.

“I couldn’t have been more wrong and was surprised to discover the wealth of activities and therapies that were available to me. I have taken Reiki and T’ai Chi classes to help with relaxation and have regular meetings with the Occupational Therapist who has improved my sleep and helped me to control my anxiety which had often resulted in me waking in the middle of the night panic stricken that I was going to die.”

Lesley continues: “One of the worse things about having terminal cancer is that I had to give up my working life which meant having cancer could have been an extremely lonely experience. That is the beauty of Day Therapy, I am able to socialise with people who are in a similar situation to my own and, best of all, we can have real and honest conversations that are free from pity.”

St Barnabas Lincolnshire Hospice is an independent charity that cares for more than 6,000 people annually who are seriously ill and at the end of life. Each year they must raise £3.4 million in order to continue their provision of services county-wide.

Lesley said: “We need this hospice. You never know what’s down the road for yourself or a family member and without it who would offer so much love at the end? You are more than just a statistic in a bed; you are treated with genuine care and respect and that is why people should continue to support the hospice in any way they can.”

In addition to accessing the services at St Barnabas Lincolnshire Hospice as a patient Lesley also volunteers on a weekly basis and provides the fundraising team with administration support.

Lesley said: “I applied to become a volunteer because of all that they were doing for me. I was desperate to give something back to the people and organisation that had helped me at a time when I needed it the most whilst I was still fit and able to do so. Volunteering has allowed me to return to the workplace with flexibility and an understanding that on the bad days I don’t have to go in.

“Meeting the people who work behind the scenes, so to speak, further confirmed to me what a wonderful place the hospice really is. I haven’t met a single person here who doesn’t care; in fact, the people here go beyond caring. They rejoice with you when something goes well and offer support when times get hard.”

Lesley concludes: “It’s like the hospice acts as your very own safety net, with arms open wide and a reassuring touch of the shoulder that says ‘don’t worry, we’ve got you.’”

Jane Lowe, aged 40, backs charity fundraiser ‘One Night in a Onesie’ after her Mother receives St Barnabas Lincolnshire Hospice care.

In 2002 Jane’s mother was diagnosed with having a Meningioma non-cancerous brain tumour. She underwent surgery and the tumour was successfully removed, however, by 2010 the tumour had returned and Jane’s mother had a second successful operation. Tragically in 2012 the tumour had returned yet again and whilst undergoing surgery a second previously undetected tumour was discovered.

Jane recalled “Due to the placement of the tumour the root was unable to be removed and in April 2013 Mum was told that the tumour had started to grow, the prognosis was not good – medically there was nothing more they could do.”

Jane’s mother began to have intermittent seizures brought on by damage caused from the surgery and by the growth of the tumour, this seriously affected her mobility and after a seizure in October 2013 she was admitted for the final time to Lincoln County Hospital.

“Mum wasn’t in a good way, the tumour was continuing to grow and the seizures had started to take their toll, resulting in a loss of the remaining movement in her upper and lower body. Mum had always been adamant that when the time came she wanted to be at home surrounded by her family. A friend of my sister suggested we contact St Barnabas Lincolnshire Hospice, as they would support our wish for mum to return home. Until that point we had naively thought that St Barnabas was only able to support families with Cancer, it is regrettable we weren’t aware sooner.

“St Barnabas have been by our side ever since. They were instrumental in getting everything in place so that Mum could leave the hospital and return home to us. The Hospice at home team have provided much needed support and, although their primary focus is Mum, they take the time to look after the whole family. Their visits are determined by Mum and what kind of day she is having; on the days they don’t come out they phone instead, just to check we are all okay.”

Jane has moved into her Mum and Dad’s house with her two young sons aged 9 and 13. She no longer works as a social worker, and now alongside her Father, cares for her Mother full-time. When asked how St Barnabas Lincolnshire Hospice had helped Jane and her family, she sat back and shook her head.

“Where do I start?” asked Jane “I can hardly put into words how invaluable St Barnabas has been. I really can’t praise them enough. The nursing team have treated us all with such sincere and genuine compassion whilst all the while ensuring Mum’s dignity.

“They help to normalise an otherwise sensitive situation by sharing this journey with us, from the tears to the laughter. Surprisingly there has been plenty of laughter, and it is those small moments, those glimmers of hope, which have kept us going from one day to the next.”

Jane continues: “Going through something like this is highly emotive, stressful and at times isolating but this is all alleviated by being able to talk to the team who fully understand our situation. You don’t have to keep explaining yourself. They have been nothing short of amazing.

“It really is important that the community continues to support St Barnabas Lincolnshire Hospice because this organisation and these people are invaluable. It is easy to convince yourself that you don’t need to get involved because situations like this won’t happen to you. But they do happen. They are happening to us right now.”

Already keen to make a difference Jane has signed up to take part in the charity’s ’One Night in a Onesie’ 10k walk on Saturday 7th June. Jane will walk as part of a 4-piece team which includes her sister Sharon, niece Beth and close family friend Charlotte. In honour of Jane’s mum the team are called ‘Shirley’s Girlies’ and have pledged to raise £500 and are already at 69% of their target. Jane’s 13 year old son and her 15 year old nephew will also join the walk as a separate team to show their support.

Jane concludes: “Following another seizure after Christmas Mum’s health has begun to deteriorate and we know it is now only a matter of time until Mum leaves us. I also know that St Barnabas will be there for us all when it happens and that in itself is reassuring. It is because of St Barnabas that Mum is getting the one thing she really wanted; to spend what little time she has left at home surrounded by her family.”

You can support Jane and her team on JustGiving: http://www.justgiving.com/teams/ShirleysGirlies/