The Thinking Ahead programme

CHFT’s Thinking Ahead Programme

The camaraderie that you get from the people on the course I think is second to none because you’re all in the same boat it’s been a lifeline to me the thinking ahead programme is specifically a programme for people with incurable cancer, so the ultimate aim really is to encourage people to think ahead and to have difficult conversations really about end of life but with the view of getting things sorted getting prepared knowing what’s going to happen and who’s going to be there to contact people the thinking ahead program at the moment is virtual we run that via Microsoft Teams so we have two patients on the virtual thinking ahead program Karen and Kathy they got along really, really well on the programme, and they’re actually meeting today for the first time.

Kathy and I bonded really pretty much the first time we’re on the course. We bonded in as far as the fact that when we’re saying stuff, he said that’s just what I was thinking, and it’s also the scaring rawness of it knowing that we’re both scared to death of what might happen. I didn’t join the course thinking that I would make any friendships, but there’s something special about meeting somebody who is going through what you’re going through. That friendship that developed has helped me enormously. The thinking ahead program is really wide-ranging, so we have a talk from a benefits’ advisor from an estate planner from a psychologist about managing uncertainty, which is a massive issue for people affected by cancer. We have a chaplain who talks about faith and spirituality, and then we have a couple of key sessions with palliative teams, and that’s around managing progression and managing symptoms like pain and chronic fatigue.

A lot of the topics can be quite emotive, so you do deal with really, really difficult subjects, so initially we have an introduction to recession. In that, you discuss the confidentiality agreement and also just reinforcing the fact that you don’t have to share everything if you don’t want to share, and we will always make sure that we make follow-up calls if there are any concerns. The things that were beneficial to me and what had an effect on me were end-of-life care. It’s not something you tend to talk about when you’re fit and well, and suddenly you have to think about that. It upset me; it made me talk about it. I would not have approached it without the help of the lovely people that I could talk to; certainly within the course, I would say that I’ve gained knowledge that without that knowledge it would be even tougher than what it is going to be like in the future, but I think the overall is the support that you get when it’s not just on the course.

It’s when you’re finished that the feedback from all the thinking head courses that we’ve run has been consistently excellent, and actually every patient and every family member who’s joined has said they did not want to do it, but looking back, they’re so glad that they did Kathy’s diagnosis. It came very quickly, and there were lots of things happening. We do most things together, so she mentioned the program, and she wanted to do it, and it was really nice to see her developing relationships with the people and professionals and asking the questions without being prompted or encouraged by me, and I think there are issues that we would not have thought about if we hadn’t gone on this program.
When you look at the thinking ahead subjects, they’re not the subjects that you’re going to think, Oh, that’s going to be a laugh or that’s going to be exciting. It’s really tough to face some of it, but I would say it’s invaluable to face a lot of the things because once you’ve actually realized some of it’s not as scary as what you really think, if you can put those worries on one side that are really troubling you and have some experts say this is how we can deal with it, and we’ll help you to do it, it takes away the fear of what it might be like at the end, and that has helped me enormously from taking part in the program.

I’ve seen that on the days that the program’s taking place, she’s looked forward to it every time. I talk to the Macmillan people, and they always say we’re there for you as well, you know, Peter, It’s not just for the café, so I do feel that I get support. I can’t really think of anything that I don’t like about the course. I mean, the thinking ahead course is so well put together, so much of a cancer diagnosis is mental. Not only that, but I think as long as you’ve got people to talk to, you can get away with that, and that’s where the cast definitely comes in somebody to talk to. I want to take one day at a time, and I feel I’m getting closer to being able to do that now than I would have had I had not been on this course. It doesn’t take away what’s going to happen to you; that’s inevitable, but it makes the journey to the end a little bit easier.