Tag Archives: Cancer prognosis

Chaotic Cancer: A Family Member’s View: Telling People

Please be aware that some of the content may be triggering. Please take care 💚.

Part of the whole cancer diagnosis and prognosis is the telling people all about it. It’s surprising some of the reactions that you get and the responses you feel as well. Some of the things that I’m going to write about are things that my mum has felt about telling people as well.

When it came to telling people about mum’s diagnosis, it was really hard. I didn’t want to cry on people. This meant I didn’t ring people with regard to the diagnosis. I rang one person when I told them about prognosis. I think with the diagnosis I blamed myself so much. I’d stopped self harming as part of the therapy I’d been having but for me, my thoughts made me feel I had to harm to stop people getting ill. Then mum got cancer. How could it not be my fault? I knew people would know I was evil.

Telling my best friend was the first person. She was amazing and the first thing she said before I’d even mentioned the above thoughts was “it’s not your fault”. She knows me very well and it was hard to see it. My belief in that statement wavers a lot still. My best friend has been an amazing support and checks in with me regularly. She’s not afraid to talk to me.

The reason I mentioned my best friend isn’t afraid to talk to me is that some people do seem to react after telling them by avoiding you or not asking the “how are you?” or “how is your mum?” questions. And I do understand this. Some people can’t deal with this. I get it. But that doesn’t mean its easy to deal with. Both me and mum struggled with this. Mum said she felt like she had something ccontagious that people needed to avoid. I felt the feeling of abandonment. The whole BPD abandonment. And it added to the whole “people know it’s my fault and hate me” thoughts. This was so hard to deal with and still is.

Another reaction is people tell you of their experiences as either a family member or a person who has had cancer. This can be useful but it can be scary too. It’s not something I’d want to change though.

Overall telling people is an exhausting experience. And sometimes even working out what order to tell people in is an issue too as you don’t know who will tell others before you get there. I thought it would be easier telling people about cancer than about my mental illnesses as its not so taboo but I’ve found that not to be the case at all. People are still scared to discuss cancer.

If you have any tips or thoughts on telling people, feel free to share in the comments or on Twitter, Facebook or Instagram.

Chaotic Cancer: A Family Member’s View: Prognosis

Please be aware that some of the content may be triggering. Please take care 💚

This is my view as a family member of someone who has been diagnosed with cancer, with particular relation to issues it causes to my longstanding mental illnesses.

Prognosis. What’s likely to happen? Are we looking at a time frame? Will treatment be a cure? Staging? Grading? All this suddenly comes up. Some of the things you don’t even realise until you’re in the middle of it. Like I didn’t realise there was a difference between the grading of a tumour and the stage of cancer. There is. (Grading looks at the speed and growth of the tumour, Staging looks at how much cancer there is and how much it has spread).

Prognosis was something that came into my mind straight away. I wanted to know if my mum would get better or did I have limited time with her. This was why there were many more tests required after diagnosis. We were pretty sure it had spread from a primary source to the liver and it was important to try and find the primary source. It was suspected to be in the stomach. The type of cancer my mum has (neuroendocrine) means the primary can be on one of many places and usually isn’t found until it has spread. As it was mum’s was an incidental finding during an operation.

To begin with we had a lot of confusion surrounding the prognosis. We were originally told it wasn’t curable but it was treatable. This sounded OK. Then we got the grading back and at first it was not the best outcome but a manageable one. Mum would have years. Within an hour we had another phonecall that changed that to it being more aggressive. Finally my mum asked for clarity on prognosis.

Eighteen months to two years life expectancy.

It was like a slap. We had never been led to believe this was the case at all. Mum just dissolved. Understandably. I just had to get out of the house (oh yes as it is covid times, her prognosis was given via a video appointment). I phoned my best friend and told her. Her response of “Shit” sums it up really. It was hard telling her. It was hard saying it out loud.

After a bit of tears, not many, I pulled it all in. I’ve buried it on the whole. I spoke briefly to the psychologist who did my last lot of therapy as I wasn’t sure about doing the group she wanted me to join. She told me to try and forget the time they had said and just go with it. After all it could be wrong. This I try to do but when you least expect it the words “eighteen months to two years” slap you in the face. I might not even get to 34 with my mum still here. My mum still has her mum at 63. It doesn’t feel fair. It’s unlikely she’ll see a grandchild.

I also feel a lot of guilt. We don’t always have the best relationship and I struggle with both ways of thinking.

The biggest thing that got me though was when I was stressing over all the chaos of cancer and someone said “it’ll get easier” and realising that it’ll only be easier, maybe, when she dies. Until then cancer will be there causing chaos. This has massively messed with my head. I’ve had nightmares. I’ve had panic attacks in the middle of the night. I cope by trying to just be practical and ignore it. But it gets to you in the end.

For more information and support about cancer check out Macmillan Cancer Support. You can keep up to date and share on my Twitter, Facebook or Instagram.