Joan Wells

Joan Wells

Joan Wells (right) her husband Richard and son in law John at Carolyn's graduation.
Joan's Tribute

I called to see my parents; it was August 2003 and we had just got back from a family holiday. Mum was struggling to tell me a story about a friend and mentioned that she kept forgetting people’s names. “I’m worried that it might be early dementia’” she said.

Then a couple of weeks later she fell at a dance and within a very short time, Mum was having problems with the names of her grandchildren, her balance was affected and – unusually for her – she had frequent headaches.

I had seen the symptoms before; mum’s mother had died of a brain tumour in 1988. Mum saw the GP and described the symptoms & family background. He suggested an eye test so she duly went to the optician who found her eyesight was fine. The symptoms were getting worse but another visit to the GP produced a referral to a psychiatrist. “Are you sure you told the doctor about Nana?” I asked.

The appointment with the psychiatrist finally arrived and he asked her lots of questions before suggesting a follow-up appointment in a few weeks’ time. When I called round that evening to see how she had got on, I found her talking gobbledy-gook, mixing up her words but clearly aware that all the wrong words were coming out of her mouth. Dad was so worried and I felt cruel saying again “This is a brain tumour not dementia!”

The next day was the 31st October and I was watching my husband play rugby in Barnsley. It was about 4pm when Dad phoned my mobile to say that Mum had been violently sick and it didn’t seem to be easing off; they were on their way to the hospital. I set off back up the M1 and met them in casualty, where we were seen by a succession of medical staff. It became a mantra; listing the symptoms, relaying the family history, describing my fears. It wasn’t until 1am that a doctor noted mum had been reporting tunnel vision and decided to arrange a brain scan and just after 2am when they took Dad & I into a room and gently gave us the news; multiple tumours in an advanced state.

By this time, Mum was unable to speak and was clearly in a lot of pain although a few days of steroids seemed to stabilise her enough for us to see the old personality returning. Following a transfer to the LGI and a biopsy the diagnosis was confirmed but at least we were able to get Mum home and acting like herself again.

The 21st November 2003 was a memorable day on two counts; it was the day that Mum was to see the consultant and get a formal prognosis and it was also my Graduation day. We went to the LGI at 11am and although the rest of us cried when Mum asked whether she would see Christmas (“maybe” was the answer) she took it all very calmly. Afterwards I was unsure what to do about the graduation ceremony due to start in less than an hour; “Well, if I’m not going to see my grand-children graduate I’m certainly not missing yours!” she said.

Mum made it to Christmas and as usual was the life & soul of the party. She went to the New Year’s Eve dance and saw in 2004 surrounded by friends. There were terrible times when she was so sick and weak, needing regular stays in Cookridge hospital to alleviate the symptoms, but there were also many bright times and it seemed to me that she was deliberately storing up happy memories for the rest of us to keep.

The final stage crept up on us when we weren’t quite looking; Mum eventually stopped eating and was rarely able to speak properly. After a short stay at St Gemma’s Hospice we were able to get a care package put together to bring her home for what was expected to be her final few days – I don’t know how Dad & I would have coped without the assistance and support of the district nurses and Homecare team. Her bed, provided by Social Services, was placed in her favourite room where she managed to fight on for another three weeks before dying peacefully with sunlight streaming in through the conservatory and her favourite CD playing in the background.

We have a portrait in our lounge, taken at my graduation. It tells a story all by itself; my dad, husband and I all with red swollen eyes and my Mum beaming out of the frame. From diagnosis to final moments took a swift and traumatic 19 weeks but there were some happy times to celebrate and hug to ourselves afterwards. Mum’s greatest fear was always that she would have the same death as her own mother and it was a great relief to us all that so much progress has been made in palliative care over the last 20 years. My greatest wish is that in another 20 years there will have been enough progress in the early identification and treatment of brain tumours to make palliative care a rare need.

Written by Carolyn Eyre, Joan's Daughter
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