It may not have been a huge amount, but made a difference - Eddie's cancer story

Published: 30 January 2024

Eddie was diagnosed with incurable oesophageal cancer. Through Macmillan support he found out about carer’s benefit and attends a Macmillan-backed cancer support group.

Meet Eddie

My first symptoms resembled heartburn. I left it for a few days because I assumed it would go away, but when it didn’t, my wife persuaded me to see the doctor. When I saw the GP, they immediately made a Two Week Wait referral for a gastroscopy, which revealed the full horror of what was going on inside me. 

I had a CT scan at Bedford Hospital, followed by a PET scan at Addenbrooke’s, which revealed the cancer had already metastasised (spread) to my liver and my lymph nodes. There was a lot of waiting around. I had to wait what seemed like an eternity before I could see an oncologist and it was almost three months after I’d first experienced symptoms that I started chemotherapy.

You spend a lot of that time worrying about what might happen, and all the while I had my wife’s brother-in-law in the back of my mind, because he had died of the oesophageal cancer three years previously.

I felt like I’d fulfilled my side of the deal by presenting as soon as possible, and then it just seemed like meeting after meeting, and clinic after clinic. I don’t know if my outcome would have been better had I been treated earlier, but I do think about it.

"When I did finally start treatment, it was highly effective."

Every three weeks I attend hospital for Herceptin immunotherapy, which I initially received alongside a cycle of chemotherapy treatment. The Herceptin treatment has been brilliant in that I’ve experienced no side effects, and feel as well now as I’ve ever done.

Chemotherapy was a different story however, and the nausea I felt after each treatment has been one of the hardest things I’ve dealt with. It wasn’t too bad initially, because I would take a steroid after my treatment (Dexamethasone) that made me feel much better for three or four days. But that extra energy and sense of feeling on top of the world would just vanish once the drug started to wear off, and I’d take an almighty dive.

"It’s always been very comforting and reassuring to know that support was there if I needed it."

The other main concern for me was how I would continue to look after my wife, who has serious mobility issues. I’m her principal carer, so I was really worried I wouldn’t have the capacity to care for her when the nausea was at its worst.

Fortunately, we had a very good carer who would come in to help me with the most challenging parts of the day. 

There’s a really friendly, supportive atmosphere at the Mid-Bedfordshire cancer support group. Everyone is willing to listen to you and advise you in any way they can, and just be kind if they can’t. Daksha, who runs the Mid-Bedfordshire cancer support group, is just excellent; a very positive and encouraging person. 

I was offered a lot of support from Macmillan. I had every opportunity to get in touch if I needed to and did receive direct support from a Macmillan Welfare Rights Adviser who advised me that I could apply for a carer’s benefit which I hadn’t realised I was entitled to.

It was thanks to her help that I applied and was granted the benefit, which may not have been a huge amount, but made a difference. The support she provided was excellent.

"Everyone is willing to listen to you and advise you in any way they can"

As for adenocarcinoma, which is the kind of cancer I have, those cancer cells don’t go away, they just get stabilised and controlled until they mutate, and then it’s a whole different ball game.

This time last year I didn’t know if I’d still be here. I had all sorts of visions of what could happen to me in a matter of months rather than years. Right now, I’m in a good place.

Tag: DGN