'Eating is such a struggle'

I used to enjoy going out for meals, but I find that impossible now, because of my inability to swallow. I struggle to eat, and it takes me much longer than anyone else. I can probably only eat around 10% of the food I used to be able to, and that has to be blended into a mush or in soup form.

So, the consequence of that is, I don’t go out for meals. Work colleagues will often invite me along to a birthday celebration, but I always decline, telling them that I’m happy to join them for a drink later to be sociable. My meal would have to arrive an hour and a half before everyone else’s and there’s not much joy involved in eating it.

I've learned to cook for myself

To find any pleasure in food, I need to cook for myself, so I’ve learned how to do that, but it takes a lot of time. I try not to let it get boring and eat the same meals all the time, but sometimes I get a bit lazy and can’t be bothered with the extra thought and effort needed. I adapt the meals I used to eat, but still can’t really manage meat or fish. Apart from Fray Bentos pies, they seem to be ok!

I realized that I could have shepherd’s pie but would have to make it in a different kind of way. So, I bought myself an old-fashioned mincer and ground the meat right down so the lamb became almost a pulp. But it was still lamb and it still tasted like lamb.

Accepting my new normal was difficult

The most difficult thing for me was acceptance. I thought for a long time that my swallowing might improve, but now I’ve accepted, after six or seven years it won’t, and that it is a permanent side effect of the treatment. The realization of this did send me into a very dark place though. I concluded I’d gone into that dark place because I hadn’t accepted the fact that I wouldn’t be able to eat normally again. Until I realized it was my new normal, I used to get very frustrated, but once I’d fully accepted it, I could take steps to move on.

Now I try to think about my son, Spencer, who has severe allergies and can’t eat a lot of things. So, for me, it could be worse. But meals are not fun. Family meals around the table are a rarity for us now. Sometimes eating in front of the television together works better as I feel less pressure to finish then, I can take my time. I don’t mind cooking things for the rest of the family that I can’t eat myself.

The joy of being alive

A man came round to service our boiler a few weeks ago and when we started to chat it turned out he had gone through cancer treatment too. It was almost as if we were trying to out-treatment each other! I told him about my 35 doses of chemo, he insisted I look at his fingers which were a strange colour, and I nearly showed him my scar. It was like a game of Cancer Top Trumps! So, we were two people who had been through life-changing experiences, having a laugh, and sharing our joy to still be alive.

I still go to University College Hospital for dental treatment and will often pop into Macmillan to remind myself of where I was and where I am now. Sometimes I’ll strike up a conversation with people who have clearly just been diagnosed and are in shock. Their partners often look more anxious than them, so I tell them that I had Stage 4 cancer and I’m still here. I can see the hope in their eyes, that’s all any of us want in that situation, some hope. I might not be able to eat many of the things I want to, but I’m still here.

I have survivor's guilt

It seems as if many people with cancer do survive now, but I do feel terrible for the ones who don’t, especially the ones who went through treatment alongside me. I only like hearing good stories, about the people who survived, not the ones who didn’t make it. I recently heard that a neighbour’s partner had died of cancer, and I experienced survivor’s guilt. Who knows why some of us survive, and others don’t?

Tony lives in Stoke Newington, North London, with his wife, Susie, and their sons, Spencer and Morgan. Tony was diagnosed in 2016 with Stage 4 throat and neck cancer and had chemotherapy and radiotherapy.