The first week would be horrible with lots of sickness, diarrhoea, sweats and feeling weak. The second would be more comfortable, although I’d still feel fairly weak and by the third everything would be fine but then the whole cycle would start again.
Because I responded so well, they put me on a second, stronger chemotherapy regime every week for six weeks, combined with targeted radiotherapy every day for 28 days to attack the minor spread to my lymph glands and stomach.
I just knew this was what I had to suffer to get through it and my MacMillan nurse referred me to The Hospice of St Francis for support. I remember pulling up on my first visit for some aromatherapy massage, looking at the sign saying ‘Hospice’ and thinking ‘what am I doing here?’ It felt a bit surreal. But six sessions every two weeks with Sandy, a complimentary therapist, were fantastic and really helped me relax and eased my cramps.
Jayne fell apart to start with, not knowing how she was going to cope or what to expect. She’d come home from work and I’d be in bed because the chemo drugs just knocked me out and all she could do was sit there and think this was what it was going to be like after I’ve gone.
She needed to talk to someone and really helpfully, she was able to have six sessions of one-to-one counselling with someone from the Hospice’s bereavement team who really understood what she was going through and could listen and give advice.
She had support from Claire in the Hospice’s Carers’ Support team, who assessed her needs and gave her a safe space to share her concerns and fears. Juliet, a Clinical Nurse Specialist in the Hospice’s community nursing team, would also call us regularly to see how we were managing. Knowing she was always at the other end of the phone if ever we needed help was a great comfort.
After the fifth session of chemotherapy, my consultant said he had some very good news. The cancer was still there but the scanner had failed to pick up the nodes in my stomach and the tumour in my oesophagus had been reduced to the size of a pea. He cancelled the sixth session, booked me in for three-monthly check-up scans and told me to go home and enjoy my life. For over a year, I did.
My brother treated us to a fabulous holiday in Corfu; I celebrated my 60thbirthday with a wonderful party for family and friends at Bedmond Football Club and I’ve experienced the joy of holding my tiny granddaughter Mya, born seven weeks premature and who I might never have met.
I looked well, it was easy to think everything was going to be fine, but we were on holiday with friends back in Corfu in October 2017 - end of the season, nothing to do except eat, drink and laze by the pool when suddenly I was struggling to eat again. I didn’t really want to say anything to Jayne but she noticed. ‘I think it’s back,’ I said.
Back home, we got onto Mount Vernon and a scan revealed the worst – it was back, bigger than before and more aggressive. I reverted to a liquid diet of smoothies, soups and protein drinks and they lasered off some of the tumour.
STOIC stands for Study of Opioid Induced Constipation and every week, Barbara from the research team at the Hospice comes and asks me lots of embarrassing questions about my bodily functions so they can assess the impact and investigate different ways of managing the problem. I find the whole thing extremely amusing and have made a bit of a joke of it but it’s given me a focus and something to do which can hopefully help others.
My best friend JJ, who spends Wednesdays and Saturdays with me playing Play Station golf, said, ‘It’s the perfect job for Phil – he’s talked s..t all his life!’
Humour is the only way I know how to deal with all this. It’s not easy to be told you’re going to die and all the people you love are going to be left behind. I’ve shed a few tears. I’ve had moments – not many but a few - when the pain has been so bad that I’ve thought I can’t go on and there have been times when we’ve got into bed and both sobbed.
But whatever life I have left, I have to enjoy and the Hospice is helping me to live my precious life well.