I had only been working in London as a graphic designer for three days when I first met Neal. He was 6’4” and the size and stature of a rugby player. He had a cheeky smile, and being our print supplier, he had brought in our design team bottles of wine for Christmas. Often, he would take us all out for lunch and I got to know him really well.
A while later he asked me out and we were having a great time, often heading away for weekends. Neal was very popular. I don’t think I know of anyone with so many friends.
But only six weeks after we started going out, he was diagnosed with a malignant brain tumour. It was a shock to us all as he’d been so fit and well.
An operation, six months of chemotherapy and six weeks of radiotherapy later he was given the all clear. We celebrated, more in relief than in cracking open the champagne. We felt we could breathe again and resumed with our lives. Later that year Neal asked me to marry him. As we looked forward to getting married, he felt unwell and brought his MRI scan forward. Sadly his hunch was right, the tumour had returned but this time it was inoperable. He told me I didn’t have to marry him but I loved him and told him we would make the most of the time we had left together.
I refused to let illness dictate our lives.
Later that year we were married and saw the day as a celebration of our lives together, however long we had. I also noticed how much our love had deepened as we dealt with the illness together.
Five more years of chemotherapy resumed and we were at Charing Cross hospital every Tuesday. Neal then had a stroke and was left severely disabled, unable to speak and with a feeding tube. My beautiful big strong husband had been reduced to not much more than a body in a hospital bed in our living room. By then I had given up my job to care for him full time.
Caring for Neal is probably the hardest thing I’ll ever do. Not only was I dealing emotionally with not knowing how long the love of my life had left, caring was physically demanding. I had a monitor on each night to keep my ear out because Neal often had choking fits, and I ensured he was washed, dressed and hoisted into his wheelchair every day with the help of some wonderful professional carers.
I made myself responsible for my husband’s life.
But the years of caring took their toll on my own health. At times I felt isolated, behind closed doors, just existing for another. Most friends and family didn’t really understand what I was going through. Although it was Neal who had the brain tumour, tending to him every day, I woke up to brain cancer every day for 13 years. It may not have been in my head but it still affected every part of my life.
I finally became so unwell, that I was unable to care for him any more and Neal had to go into a nursing home whilst I recovered.
During this time I found clarity on a silent retreat. I realised I hadn’t been there for me. I had been there for Neal and everyone else, but not for myself. I had been great at people pleasing. It was like I wore a mask – pretending I was fine, even though I wasn’t. I just didn’t want others to see I couldn’t cope. I needed to be kind to myself, be more honest with others and ask for more help.
No wonder I was ill, I’d left myself last on the list
A few weeks later I resumed with looking after Neal at home but this time I was also caring for myself.
I recovered my health and found new ways to ensure my wellbeing, even whilst caring for a palliative care husband. This insight has already helped improve the lives of other carers and I realised I could help more.
My insight and knowledge started to help other carers.
On the 6th September 2015, Neal sadly passed away, four days shy of his 56th birthday. He’s not suffering anymore and I know I gave him my best and my love.
Three in five of us will become carers at some point in our lives. I share personal stories and knowledge to help carers, not only to remain healthy, but to enjoy life again.