Patients, family and supporters share their experiences of our care and their support
20 October 2016
I will never forget the moment that my husband Hugh broke the news that he had been diagnosed with prostate cancer. The thoughts and emotions that explode in those few seconds are indescribable. The enormity of the implications, the effect on the children, on Hugh, the shock, confusion and the profound, utter dreadfulness of it – too much for anyone to immediately process. As I write, two years and eight months on and seven months after Hugh’s death, I wonder if I am any closer to understanding what happened. At other moments I understand all too clearly. He got a disease and he didn’t survive it. It happens.
Hugh’s diagnosis came the day before my birthday in January 2014. We rang my parents to postpone a planned brunch and friends to cancel a birthday dinner, the excuse being bad colds. If only. But we needed time on our own to assimilate the news. Hugh later apologized for not telling me before the children but I understood his reasoning. We have always been a close, sharing-everything family and there was a logic to us learning the news together. Our children, Eleanor then 18 and about to go off for a gap year adventure to Ethiopia, and William, then 16 and in the sixth form, like me were shocked, speechless and overwhelmed.
After the diagnosis was confirmed we were told that Hugh’s outlook could be anything from two to ten years. Prostate cancer is horribly common in men but many never even know that they have it, dying eventually from something else, or their disease is picked up early enough for effective cure. In Hugh’s case the symptoms didn’t manifest until it was too late. From the start we were up against containment rather than cure. The first year passed. Slowly we adjusted to our ‘new normal’ and always we stayed optimistic that Hugh would be at the distant end of the prognosis range. A course of chemotherapy was difficult for him to bear at times, but for the first few sessions he would cycle to and from treatment, determined to stay as normal as possible. It played havoc with his wonderful head of dark hair.
Hugh had been two months away from retirement when he was diagnosed. He had had a long and distinguished career as a GP at Lensfield Medical Practice in Cambridge and was well known amongst patients and peers for his astute insights into diagnosis and medicine in the community. He had a particular interest in end of life care and the many letters of condolence received from relatives of those he had compassionately cared for were a testament to this. It was the knowledge of end of life that led to his early and clearly stated intention to die at the hospice. He was well aware that here was where he would receive the best, most-informed treatment and understanding.
However at first he was able to enjoy most of the activities he’d planned for his retirement – more time with friends and family, developing his Christian faith, walking and birdwatching, golf, art, music, cooking. In recent years he’d become a keen real tennis player and it was this that became a marker that things were changing. Moving quickly around the court was becoming harder, the pain in his back increasing, recovery time longer. He reluctantly gave up playing altogether but continued with golf. Sixteen months after diagnosis this too became challenging, his health suddenly deteriorating. The tumours in his vertebrae were beginning to cause spinal cord compression, resulting in intense pain and markedly reducing his mobility. He spent ten days in Addenbrookes hospital during which time he mentioned that he might be moved from there to the hospice. This was shocking news to me. By now we had been told that things were not looking good but talk of going to the hospice worried me greatly. I hadn’t realised that the hospice wasn’t only for the last days and weeks but that it also offers help to people in Hugh’s then condition – not yet well enough to go home but not needing care in an acute hospital. So he went to the hospice for ten days.
My first encounter with the Arthur Rank Hospice had been in 1995. Hugh’s father Ian had been admitted when he too was suffering the final stages of prostate cancer. It is a long time ago but my abiding memory of the hospice was of peace, calm and kindness. We found exactly the same on Hugh’s admission – a place of immense care and compassion but also a very practical place. A visitors’ kitchen where family and friends could make anything from their own tea and coffee to a three course meal. Always milk in the fridge, biscuits in the tin and some days a homemade cake that would appear as if from nowhere with an exhortation to share. A sitting-cum-dining room carefully furnished to feel homely and domestic, in no sense like an institution, a beautiful, sheltered garden and fresh flowers everywhere, always.
After ten days Hugh came home to our rapidly adapted house – a stair lift, a hospital bed downstairs, a new handrail by the bath, the walking aid that by now he needed. The occupational and physiotherapy teams based at the hospice gently guided us through the whole process, organising the equipment, teaching Hugh how to cope with his reduced mobility and all with an innate ability to treat him with respect and understanding.
Six months later, just before last Christmas, we were back but this time Hugh didn’t come home. His condition had deteriorated quite quickly and we were unable to look after him. However we had learned from the previous summer that he was now in the right place and we had no fear of being there – this wasn’t like being hospitalized, more a feeling of being cocooned - and it may sound odd to someone who hasn’t experienced it, but a good place to have to spend time. Arthur Rank doesn’t have opening hours, visitors are welcome at any time and there were times that I found myself driving over in the middle of the night when Hugh’s medication had given him bad dreams and disorientation. During the last week I didn’t leave. The nurses would wheel a bed into his room each evening so that we could sleep side by side – a wonderful gesture of humanity.
It would be unfair to single out any group of the staff and volunteer community as every person we came into contact with was superb, supremely capable and so human, making us feel safe and cared for as an entire family. As a doctor Hugh was a questioning patient and up to the last day wanted to be fully involved with his treatment. The doctors and nurses managed that fine balance so skilfully.
Hugh was an amazing and very special person who dealt with his illness with immense bravery. We will never get over his loss. For my children and me, as we start to rebuild our lives, we feel enormous gratitude to the Arthur Rank Hospice, its entire staff and volunteers for the way they looked after Hugh, allowing him at all times to keep his dignity with kindness, authority, respect and understanding. They continue to be there for us with counselling services and always a comforting cup of tea. You should all be so proud of yourselves - you are part of something incalculably special and we thank you.
"They basically just looked after her minute by minute for those final two nights. It was incredible. [...] It was very much as if we were being cared for as a couple.” Michael Barnes' wife Svitlana received care from our Hospice at Home team in February 2019. ... click for more
“Having special time together with Sam in those last few weeks as a wife, but also as a Mum - and for him being able to be a Dad – was really important. Hospice at Home allowed us to be family together, the four of us, at the end.” Xanthe’s husband Sam received care from our Hospice at Home team in 2018. ... click for more
Angela McGrath, Mum of Daniel shares her story and inspiration for walking to Liverpool in memory of her son ... click for more
“I felt like somebody who belonged there and was part of the family”. Kirsty Bradbrook tells us about her husband Mike’s care at Arthur Rank Hospice at the start of 2017... click for more
Jennifer Cater shares her story of the loss of her beautiful daughter Debra Jane Hodgson... click for more
We had the pleasure of chatting to Claire, who has taken part in Bridge the Gap walk since its first year in 2001 as part of the well known group, the ‘Sunflower Girls’.... click for more
Sally shares her touching and powerful story of her family and their relationship with the Hospice... click for more
I will never forget the moment that my husband Hugh broke the news that he had been diagnosed with prostate cancer. The thoughts and emotions that explode in those few seconds are indescribable. The enormity of the implications, the effect ... click for more
Brenda & Stuart Evans reflect on Bridge the Gap
A couple who have ‘Bridged the Gap’ for many years.... click for more
Brenda & Stuart Evans reflect on Bridge the Gap
Kevin very kindly met with Donna Talbot in August this year and shared his touching story of the loss of Mary, his wife.... click for more
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