I’m David.  I’m 69 and I live in West Chiltington, a village near Pulborough in West Sussex.  I cared for my wife in the 10 weeks between the date she was diagnosed with terminal cancer and her death.  My wife’s name was Joan, but she was always known to me and her friends as Jay.  I feel that my darling Jay was let down by the system in her dying days. 

The events began in October 2004 when Jay woke up one morning and had turned yellow.  Her skin and even the whites of her eyes were yellow.  She was never ill a day in the 10 years we'd been together.  There was no warning. 

Jay was seen by her doctor at the Pulborough Medical Group that afternoon and a few days later blood tests confirmed she was suffering from jaundice.  The GP referred her to St Richard's Hospital in Chichester for further tests which revealed she had a rare form of cancer on her bile duct, called cholangiocarcinoma.  Jay asked if it was operable.  The consultant said “No”.  She asked how long she had to live.  He said “No more than a year”. Then it was a case of 'next please' and we just walked out of the place.

A week later someone from Macmillan Cancer Relief came to visit, but after that my wife only received two visits from a Macmillan nurse.  Jay continued on in pain - she was never out of pain.   She was constantly sick and had thrush of the mouth and night sweats.  The nurse rang every two or three days and spoke to her.  After the call I'd speak to Jay and she'd tell me I needed to get her prescription.  Nobody ever sat down with me as a carer and told me what to expect, or what to do and not do.  I was trying to make my wife food, but she couldn't keep anything down.  I had no advice on what I should make for her. 

Jay was referred to an oncologist at the hospital in Portsmouth, who said he would give her another six months to live with a treatment of radiotherapy.  It was a straw we clutched at.  The first appointment was on November 4 when they did a scan.  We were told to go back a week later but the afternoon before the appointment it was cancelled and put back by a week.  That really stopped my wife in her tracks.  I phoned the consultant because I was very concerned and he said he would consider doing 10 radiotherapy sessions instead of 25 so Jay didn't have to make the horrendous trip to Portsmouth so many times.  It was very difficult and painful for her to travel.  We made the difficult trek to the hospital the following week but discovered the consultant was not there, and we were seen by a registrar but the notes of that consultation were lost.  That did it, and my wife decided she would not have the radiotherapy.  She just thought they didn't care about her.  She made the decision on her own and I couldn't change her mind. 

I then watched the excruciating decline of my wife.  We received great help and support from the district nurse during those times.  After a week at the Macmillan unit at the King Edward VII Hospital in Midhurst over Christmas, I took my wife home, where she died a week later.  When you're told you're dying, the only thing left is palliative care - to have someone there to make you comfortable and help you through the worst times.  My wife was amazingly brave, she was determined to keep her dignity and she wrapped the Christmas presents for her grandchildren even though she was in terrible pain.

I've spoken with other people who had a completely different experience with palliative care - their doctor came out to see them every few days and the support they got from Macmillan and the hospitals was wonderful.  But all I can say is that it wasn't like that for us.  In an ideal world my wife and I would have received more support right from the time of the diagnosis, rather than being left to deal with the issues alone.  Jay was the beat of my heart and I can't get over that - I don't want to get over that.  She was a great believer in people power and I want to make sure that no one else suffers the way she did because palliative care let them down.

I am contributing this item to the Rarer Cancers Forum website in memory of my darling wife.  I hope that our story will help others to understand and demand better treatment as human beings and to know the questions to ask and expose the inefficiencies that exist.

If you would like to make contact with David to discuss palliative care issues, please email contact@rarercancers.org.uk and we will put you in touch with him.