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
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
Caring gives others a better quality of life, it can even extend life, but we do need to care for ourselves