Category Archives: Chaotic Cancer

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.

Chaotic Cancer: A Family Member’s View: Tests

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

I explained this new little series in an earlier post ➡️ Chaotic Cancer: A Family Member’s View: Intro

So with diagnosis you think the next step is treatment but oh no there is an endless round of tests and appointments to deal with. And it’s stressful for all involved.

A lot of these appointments and tests happen at the last minute so it is extremely hard to plan things around them. Things get changed at the last minute and the term chaotic is very apt.

For someone who needs routine and control this has been extremely hard for me to deal with. It’s not easy for anyone but this has added to the stressfulness of the situation. I can feel the anxiety in me about a change in routine. It’s selfish I know. Or that’s what I’m telling myself. What’s my anxiety to my mum’s cancer?

Having a lack of control over the situation and life in general leads me back to my reliable coping mechanisms. Not good ones. Self harm is back. And honestly I have no shame about it. I know I need better ways to cope. But currently don’t have the time.

For anyone going through this, how did you cope with the appointments? My phone calendar has never looked so full and I think that is the only thing giving me any sense of control, having all the dates in there.

Feel free to share your thoughts, tips or ideas in the comments or on Twitter, Facebook or Instagram.

Chaotic Cancer: A Family Member’s View: Diagnosis

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

I introduced this series of posts in this blog post ➡️ Chaotic Cancer: A Family Member’s View: Intro. This post is about my mum’s diagnosis of cancer and some information and thoughts surrounding that.

My mum’s cancer was an incidental finding. We had no suspicions that she may have cancer. There were no obvious signs (though looking back we have picked some out). It was far off the radar. I don’t know if this made it easier or harder to deal with. I have no prior experience of anyone I know getting cancer. But it was tough.

Mum went into hospital before Christmas with an inflamed gallbladder. She had antibiotics and came home. About six weeks later at the beginning of February 2021 she had a reoccurrence of the inflamed gallbladder and so they decided to remove it in an emergency surgery. It was then that they found something. On her liver were lesions. Tumours. They took biopsies. Then we had to wait for the confirmation of cancer. They knew it was. It couldn’t be anything else. But we didn’t. So I grasped that tiny bit of hope. Hung on to it tight.

Within a week she was back for the results. It was, surprise, surprise, cancer. A rare one. Slow growing. Treatable. Neuroendocrine cancer. That’s what they told us then. There was still hope. But I dissolved. That day I sobbed for an hour. Mum was meant to be isolating after exposure to covid while on the ward but screw that, I hugged her. Then the guilt set in.

To understand this guilt means explaining that in my therapy I’d been working to stop self harming. I had been using as an OCD type compulsion to stop people getting ill. I’d been told it had no effect on them not getting ill. Then this happened. I’d made my mum get cancer. I even told my dad it was my fault. The guilt overtook me. I had ended the therapy by then ahead of a new group but all I wanted was to email the psychologist and tell her she’d made me give my mum cancer. Yup, totally irrational. Or that’s what I’m told. I bounce back and forwards still.

With the diagnosis came a lot of emotions. Emotions I didn’t understand. Emotions that were set to overwhelm me along with other people’s. So I pushed mine down. From the day after the diagnosis I didn’t cry for a long while. I threw myself into the practical. I didn’t feel anything. I totally blotted out my feelings. I had enough to overwhelm me with other people’s emotions. Those had a name though as people could tell me them. My own I can’t name.

So diagnosis was stage one of the whole cancer chaos. The start of the chaotic world it brings. And beginning it all in the midst of a pandemic has brought challenges as well. Mum was on her own for the diagnosis as at our hospital appointments have to be attended alone. I think that has hurt her a lot. I don’t know though.

So from diagnosis comes many more tests and appointments. These I will discuss in another blog post. I think I thought diagnosis would be the hardest part. How wrong I’ve been.

If you want to share any experiences, thoughts or resources feel free to use the comments or my Twitter, Facebook or Instagram accounts linked to this blog.

Chaotic Cancer: A Family Member’s View: Intro

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

About six weeks ago (or longer, the days are all merging) my world was hit by the news that my mum has cancer. It’s something I’ve been dealing with on top of coping with my mental illness. Therefore I thought I’d use my blog as a way of recording how I cope (or not) with everything that comes from living with someone with cancer. And not just anyone living with someone with cancer but someone with a prior mental illness. I know bits will overlap with everyone who supports someone with cancer but there are bits that I think I’m finding harder due to my diagnosis. Maybe not… But this will be my way to explore it.

I’m planning to set this up on it’s own page of my blog so it will be together with other information or support as well. And it will all be in one place.

My plan is that I will be as honest as I can be. That I will look at the good, the bad and the ugly. This may mean there is triggering topics discussed so please be careful. As always I will put a trigger warning at the top.

So post one will hopefully be up shortly (once I’ve written it) but I don’t think I will keep these posts to a schedule as life is already chaotic. I also still want to write about other areas of mental health and illness too, this is just an add on.

As always if you want to share or ask questions feel free to use the comments or my Twitter, Facebook or Instagram accounts.