Anne-Marie’s Story

Anne-Marie’s son, Marley, was cared for at the Inpatient Unit at Arthur Rank Hospice Charity. Anne-Marie kindly shared her story of Marley’s experience: 

“Nobody wants to talk about death. I don’t really like to go back there, to those five days. But I will. I will re-live every part and share it, if it will help people understand about the Arthur Rank Hospice. 

Diagnosis

Marley was 24 years old when he was diagnosed with a nerve sheath tumour after months of tests. He was born with Neurofibromatosis, which was diagnosed when he was 12. He had no other symptoms apart from birthmarks that were investigated after a routine check. He never had any other symptoms, no learning difficulties, no physical problems at all, not until he was 24, after gaining his degree in music production at BIMM university in Brighton. 

He was incredibly brave. He made a carefully deliberated decision that he would have surgery but refused any other conventional treatment. He researched and the only other person recorded with his rare cancer died after chemo. Sadly, there are no guarantees with any cancer treatment, but he chose a different way to heal with science-based protocols. He radically changed his whole lifestyle. The wonderful oncology department at Addenbrookes were very keen for him to do conventional treatment. He was the youngest person to turn it down, but he showed his research in his usual gentle but steadfast way and the team observed and did diagnostics but respected his decision. 

Marley’s health

He did remarkably well, attending CrossFit within 8 weeks of major surgery to remove the tumour. Not once did he have to go to the doctors or hospital unless for diagnostics. He had a good year of great health. Even though the tumour split on removal, he managed to keep his body cancer free, it did not metastasize to any other organ. But the tumour grew back after 9 months and grew back very aggressively.  

He decided to go to Ibiza. He asked what would happen if he died there. I told him it was a nice island to visit his grave, as we wouldn’t have been able to get insurance and I gave my blessing. He returned after a week with symptoms starting to show. It was that day when his energy left and he was overwhelmed by everything that his care worker from a charity came to visit, she saw he was exhausted and spiralling so made the call [to the Hospice]. 

Marley never regretted his decision and said he had had a wonderful year. He was still doing pull ups in the room at the hospice and lifting his little cousin up. The tumour was on his vagus nerve and so he suffocated, and he knew that’s what would happen. 

Gratitude

So, my inspiration to come forward is gratitude. 

Gratitude that I got to be with my son as he was dying, many do not get that opportunity with their loved ones, and it has helped us as a family that we had that. 

I am thankful that a call was made, a bed was offered, and he accepted. 

I am thankful that as he walked around his tranquil room and looked at the ensuite he said, “I like it here mum.” 

I am thankful that the staff. So calm, kind and experienced. They found him a drug to help with his digestive track that had stopped working so he could eat again without pain, and we were able to come and go as we pleased. We went to Jamie’s Italian. I had a word with the staff, and they fetched everything he wanted to eat quickly before he got too tired. I loved seeing him eat and enjoy every mouthful, his last meal out. 

I am thankful of the photo he sent at 11pm of him sitting in a hydro bath with disco lights that the staff happily offered and ran for him as he was overwhelmed, and it calmed him. 

For the lady who bought him tea and toast in the middle of the night because his body did not know night and day anymore. 

For the beautiful apartment above the ward, our family used so we could do relay back and forth to be with him and get some rest ourselves and gave him space too. I am thankful for letting us bring his puppy in and sharing him with other patients, making them smile too. 

I am thankful to the consultant that explained clearly and with such kindness the process and what we might experience. 

I am grateful to the Chaplain that came every day and was sent away by Marley every day, until that last day when Marley walked onto the patio and spoke with him for a long time. 

Also, for the massive table in the hall that was filled that evening with his grandma, aunts and uncles, cousins and friends who were able to keep vigil all night as we soothed him, and his sister sang for him until he left us. 

I am thankful for the quiet presence of the staff who let us be with him for as long as we liked with no rush or pressure to leave. His father pushed his bed into the moonbeams coming through the huge glass windows so his body could be in their glow until the morning. 

Reflection

I have seen the contrast, of what it could have been like for him. Of the wards and busy corridors of Addenbrookes. I have said goodbye to other loved ones, sheltered from the coughs and noises of other patients by a blue paper curtain. The ones who were too afraid to talk about the end, who didn’t know of this other place they could go, just down the road. Staff too stretched, too busy to talk to them about the possibility. 

Sometimes we don’t get the choice of the place of our final breath but if you are lucky enough to be able to decide, go there and don’t be afraid to tell people of this place and of the home care too, so you can stay at home. It is a free service, we did not pay a penny but we all fund raise, the whole family and friends. It is why, 7 years after his death, we continue with Souper Saturday, a simple community event during the winter to raise funds for other people so they can use the service. It is why people climb mountains, run marathons, walk, bake, sew and use whatever skills they have, volunteer their precious time to serve tea and toast, lunch in the restaurant to build bird feeders and weed the gardens. Businesses donate, people leave money in their wills, and some donate a tiny bit each month. 

Why? Because they have experienced the Arthur Rank Hospice, and they want to keep the doors open for the people that come behind. The place of love in a time of pain.” 

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Anne-Marie has also shared her experience with the Cambridge Independent, a supporter of the Protect our Care campaign. You can read the piece here: www.cambridgeindependent.co.uk/news/community-support-enables-12-month-reprieve-for-arthur-rank-9449794/