John: “I live in Putney with my wife Dee. We had a flat here as students in the late 1970s. When we married in 1983 we brought an old shop with a flat above it. Over the years we’ve converted it into a townhouse and have lived here ever since.

We have two grown up kids and a dog, Peggy-Sue! Dee is an integrative arts psychotherapist. I am a retired electronics journalist and have a great love for music.

I underwent a total laryngectomy in January 2016.  A voice prosthesis valve was fitted soon thereafter and my speech was fantastic!

I became part of a laryngectomy choir with the charity Shout at Cancer and loved it:

When the laryngeal surgeon told me the cancer had returned, and that I was terminal, he gave me 6 – 12 months. That was in January 2017.

I was recently part of an immunotherapy trial, but it hasn’t worked for me. I lost my voice earlier this year as the tumour has now buried my speaking valve. And a scan in May showed the disease is on the march, with signs of metastasis to the brain – so I’ve undergone whole head radiotherapy.

I am fearful of how much longer I’m going to last.

It’s so frustrating, of course, that I cannot talk. But, as I’ve been telling everybody for the past 18 months, I simply do not feel like somebody who is dying.

The point I contacted Trinity was in the middle of May following radiotherapy. When the after-effects kicked in I really felt – for the first time – like somebody who didn’t have long left. Dee said I’m going to call Trinity now … I didn’t argue!

Having taken ‘the plunge’ it feels such a relief to have someone like Anne coming to visit, who understands what I’m dealing with, and to have someone’s shoulder I can lean on.

I feel a little stupid that I didn’t call for help earlier, but on the other hand, I have been managing. 

I’d been living off over the counter pain medication, but Anne talked to my GP about the drugs I needed and for the first time I’m taking more effective pain killers.”

Anne: “I help John access medications that have given him back his appetite and well-being. His wound is now an issue, but we’re addressing it together.

John has lost his voice but he doesn’t want to lose his sense of self – and it’s all about being collaborative. I don’t know how I’d feel if it was me on the other end and somebody was coming in to look after me, I would very much like to still be in charge, and so that’s what I make sure I support people like John to do.

As a nurse at Trinity, I want people to feel they have experienced, qualified people looking after them. This is the part where we’ve got to get it right for people, and the best way to do that is to ask people what’s important to them and what they want us to work on first. 

For John, I feel it’s supporting care for his stoma and coming up to the hospice that’s been the biggest help, and actually, helping his voice to be heard.

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