This blog was originally published on Dyingwell.uk, a website owned by Clair Fisher.
In Clair’s words: “Dying Well was my retirement project. A space for me to document my personal journey, to explore the evidence around wellbeing in terminal illness and test out some of the theories.”
I know for many people scanxiety is a very real thing. It used to hit me pretty hard and bring back memories of those first emergency scans, but now I’m normally pretty calm. I remind myself that the scan doesn’t actually change what’s going on in my insides. The bit where they ask you ‘Do you know why you’re having this scan?’ always used to elicit from me a long explanation. Now I just nod and say ‘Cancer’. This too has become a normal part of my routine. Like choosing a sandwich on the chemo ward, or wearing a waterproof cover over my PICC in the shower, or preparing the twice daily injections that keep my immune system functioning.
The bit that never quite becomes normal is the results conversation.
I’ve had another one of those conversations this week and they are never simple. Because with stage 4 cancer it’s like whack-a-mole; there’s no one treatment that keeps all the various bits of cancer at bay simultaneously.
It’s also not simple because I tend not to accept every further treatment that is offered. I like to weigh, consider and decide whether what’s being suggested is right for me. This is because although I have no fear of death itself I am very keen to avoid the sickness that seems to come from excessive treatment. And I ask all the awkward questions!
Over the past few years I’ve developed a pretty good relationship with my oncology team and I think they understand what’s important to me. More life is not in itself enough to convince me. I want more quality life, more well time. And I try to avoid treatment that would spoil birthdays or steal holiday time; these after all are the times that I’m staying alive to enjoy!
I think it’s really important that people know that it’s not compulsory to accept the treatment plans that are suggested by the medical teams.
It’s OK to negotiate, to question or to refuse. Especially when the diagnosis is a terminal one and you’re no longer chasing a cure – then I think it’s important to be 100% sure that what’s being offered is actually that you want to happen. If you haven’t had an ‘What Matters Most’ or Advance Care Plan conversation with your medical team, this might be a good place to start to sort out whether it’s comfort and quality of life or quantity of life that’s most important to you.
A blog I wrote for the Conversation Project was published this week. There I say more about why there is liberty in saying no sometimes and how I relish the freedom of not having to ‘fight’ cancer, but instead prefer to get on with enjoying living. I am hugely grateful for the support of my family in this, who are entirely on the same page as me.
So this week I’m planning what’s next. What I’ve been offered is two weeks of Radiotherapy instead of the two final rounds of chemo. I’m asking questions and making plans.
It helps me to remember that I don’t have to think of all the questions in one go or get answers from just one person. After the initial consultant conversation, there will be further opportunities in the admin / consent phase. I know I can also talk to my specialist nurse and the hospice team. I gave up consulting google very early on in this journey it rarely does anything other than terrify me!
So, in case it helps others think things through, these are the kind of questions I’m asking as I decide whether this is right for me:
Timing: If I don’t need the chemo, what else could I do with those 3 spare weeks? Will the new treatment fit entirely within those 3 weeks or will it steal some of the summer that I’d planned? If they can’t start the treatment in time to fit it into those 3 weeks, could I do fewer days radiotherapy? What about if I waited until September to have it? Could I do some now and some later? How long could I have off treatment if I go ahead with this plan now? If I delayed how much worse would the pain get and is there another way to control it?
Treatment: What does the treatment itself involve? What are they hoping it will achieve? What are the side effects? How long will the side effects take to recover from? What are the other drugs that they might want me to take & do they have side effects? What would happen if I didn’t do anything?
Logistics: What about the logistics of the treatment? How often are the treatments, where are they going to be? Can I drive myself, who could take me? What else is in the diary for those weeks, what would I be missing, how can I cover that? Can I amalgamate other existing appointments into this new schedule to avoid having to go to 2 different hospitals on the same day?
Family: We talk about these decisions together and I try to unpick what everyone else is thinking / worried about too. Or if there’s anything they need / want me to do before treatment, or things we can do to make it easier on everyone.