Anne’s husband David Lewis was diagnosed with bladder cancer in 2012 and passed away in 2013 at home, with the support of Marie Curie nurses.
David’s symptoms were initially misdiagnosed as an enlarged prostate in 2011 and he had to wait nearly a year for the correct diagnosis in October 2012 – but he died 3 months later. Anne has since received compensation from the hospital involved due to gross negligence.
Anne and David met cycling in 1991 and it was always a shared passion for the couple. Since David’s death, Anne has taken part in the Etape Pennines in 2013 and 2014 as well as making and selling cloth bags for GDA back in 2015.
She is very excited to be taking part in The Marie Curie Etape Caledonia in 2017.
David and I first met in France in 1991, during the Paris-Brest-Paris bike ride. It’s a 1,200km event with a maximum time of 90 hours. We shared the road a few times back in the UK on endurance cycle rides, and the 1993 London-Edinburgh-London 1,400km event was when we got together – we always had that love of cycling.
We married in 2007 and were really happy living together near Swansea. David was a civil servant for the Department of Work and Pensions, and I was a speech and language therapist. I took early retirement in 2010, and now I’m involved in voluntary work, mostly to do with conservation.
David was actually misdiagnosed; the consultant said David had a benign enlarged prostate but he completely messed up. His symptoms were worsening and he was having painful tests. We went to our GP, who was not a senior partner, and we kept going back until the senior partner at the GP fast tracked David to the local hospital, but this wasn’t until October 2012 so it had already been nearly a year since he’d had that first scan.
A repeat scan showed a tumour the size of a grapefruit in his bladder. Radical surgery was attempted and, if successful, David would have had a urostomy and colostomy. This would have meant a big change of lifestyle but we would have coped. The surgeon discovered that the tumour adhered to his bones and blood vessels: there was no further treatment option but palliative care. I recall sitting crying by David’s bed when he came back from theatre. It was such a shock as David was so fit – he wasn’t overweight, he wasn’t a smoker and he had a strong heart. He cycled a lot and had been very healthy.
Contacting Marie Curie
I first contacted Marie Curie myself; I went to the hospital to just talk and was given some leaflets about end of life. We were very much on the palliative care path and out of the ‘fix it’ hospital mentality. I found the nurses in hospital helpful, as they made time to talk and were empathetic. They suggested that I phoned Marie Curie, the Port Neath Talbot branch. I got our spare bedroom ready as an area for the Marie Curie carers with a kettle, chair and reading light.
David wanted to be home and he came home on 14th November 2012– home is home, isn’t it. He was with me and it’s where he wanted to be. We have beautiful views over the valley, and he was able to take walks and even go to the local pub for lunch.
David was told he had to go to the Swansea Hospital for blood transfusions the weekend before Christmas, 2012. He really didn’t want to go as he was anxious that he would be ‘kept in’ but the Marie Curie carer reassured him. On 30th December I had planned a birthday party for him turning 57 at the local pub, including a buffet and cake, our friends and family – he was in a lot of pain but he was there, and it meant a lot.
David then went to Ty Olwen Hospice between 31st December and 13th January for pain management. Having him in hospice meant a break for me too. Also, the nursing staff and doctors were there to talk about death and dying and the reality of it. A doctor saw me leaving upset and ushered me into her office to let out my emotion and to talk…and I know David found her very kind and approachable too.
It was important to Dave that we complain to the NHS about the medical negligence. The consultant who saw his original scan should have seen his tumour a year earlier. Ultimately, after a long legal process I was compensated for the medical negligence and the suffering endured by David.
Dave was extremely brave but he did have his moments as well. From the moment we knew it was terminal, we reached out to our circle of close friends. Dave was an only child – and his mother had had a stroke – but I come from a large family. They were all very supportive.
We had Marie Curie nurses come to the house in December and through to Christmas. My local branch were not able to offer the night help but a nurse would come during the day, and I knew I could phone with questions and for support. When the nurses were there, it also gave me a chance to chat to them. Sometimes it wouldn’t even be about cancer, we would talk about it all – current affairs, travel, music. They were also able to share a joke…humour is important at times too. Marie Curie had that sensitivity and flexibility to know when we didn’t want to talk about cancer, to follow our lead. A nurse would come for about 3 or 4 hours I think, and that was lovely.
So Dave came home from the hospice on January 13th and he died on 16th January. We did pay for nursing care privately too. The NHS did actually pay for that for 2 nights due to the negligence.
Marie Curie Nurses
The Marie Curie nurse during those days, I remember, was a young man and he was great. By chance was an outreach nurse from the hospice. I remember as David came home from the hospice the doctor said to me ‘it’s days, not weeks’ and it was such a shock. David seemed totally coherent and no worse physically so it was of course a shock. He was so relieved to be home, as it came with all its comforts – friends could pop in and having privacy is so important too.
On the final evening, Marie Curie had been. We were lucky that we had a fair bit of consistency – it was always the same 3 or 4 nurses over that period. David had to use incontinence pads and needed changing often. The nurse was just so gentle – we shared a good bottle of white wine; a Chablis as we had at our wedding, with scrambled eggs, salmon and toast. David was in the hospital bed downstairs but comfortable with his choice of food, music and we talked about a recent cycle tour trip to Northern Spain. We both rested well that night with a night nurse checking on David.
By the morning, David was quieter but spoke and held my hand. David slept but when my brother Tom arrived over, but he did wake up to smile and say hello. David died at 2pm…without waking he just slipped away peacefully. People talk about a ‘good death’ but it is what you want, once you’re on the palliative journey.
Cycling was such a shared passion for us. It was a huge part of our lives together. We did cycling touring holidays in many countries; Europe, Cuba and Sri Lanka, as well as the big races. We enjoyed our adventures together. When you love a partner and you have them to share something like that with, it can be hard to go back to it as I felt it would make me miss him so much.
The first time I went out on a bike after Dave died, I felt heavy but then it was like he was with me in the saddlebag. He asked me to ‘please do the things we would have done together’ and this inspired me to get back out on my bike. I did the Etape Pennines in October 2013. My niece, who lives in the Pennines, did it with me, which was great. I then went on to cycle Calais-Nice-Corsica in 2013. And I toured from the Pyrenees home in 2014. In 2015, I did the Paris- Brest-Paris for the 4th time and it was brilliant. At Christmas 2014, I thought I would just have a go and I didn’t even tell my cycling friends. I rode the Paris-Brest-Paris 3 times, and one of those was on our honeymoon in 2007. It was an extremely wet year at I said ‘never again’ but as they say; never say never. Local rides and those I have done before with David have so much resonance. In a way, I like to do new places and new routes.
I am excited to be riding the Etape Caledonia this year and to be raising funds in David’s memory – once again I shall be doing it with my niece. She has a little boy now so it’s a way of her getting fit again and it’s lovely for us to do it together.