I Don’t Want to Talk About It

I’ve been playing with book ideas and beginning to write. One a Creative Cancer Companion and the other a series of essays called Seven Songs for Survivors based around songs by powerful woman. I think these may be compatible in the same book but as an ex TV tart I know this is really just a formatting question. I want to combine parts of the blog with writing about self advocacy, and the power of creativity and self expression for health and mental wellbeing and transformation. When I am painting/writing/ singing I feel all the cells lining up in a little row resonating and vibrating on a healthy frequency.

Today’s Song for Survivors is ‘I Don’t Want to Talk About It’ because I really haven’t wanted to. And I still don’t that much. Not in a therapeutic context. Strictly speaking this song doesn’t qualify for my format as it was written by a man but I love the Everything But the Girl version for Tracey Thorne’s voice). I’ve had a fair bit of therapy in my life and I do see the value but this time round, as I put my head down and charged my way through the emergency phase of the past six months, I just did not want to reflect. I felt if I looked left or right, up or god forbid down…I would falter. Now, in this period of ‘respite’/ ‘over for now’ (???!!), I expect I do need to do some therapy but my creative activity has left almost no room for negative thoughts or doubts. There is a lot of processing to do, no doubt, and quite a lot of ‘What the hell just happened?!’. That song is for a different list but no less true. I think of myself as a good communicator but I don’t always want a conversation about difficult things. I prefer to move on and look forward and have always had limited patience for therapy. Now that the urgent stuff is largely past I am noticing all those little trauma signs. Being quick to become emotional. Crying at everything little thing. Anger. Irritation. Sensitivity to loud noises and bright lights. I’ve been here before, I remind myself. It passes. But a bit like fat, if you squash it down it one places it simply pops out somewhere else. My emotional ‘control pants’ aren’t working 🤣.

A few weeks ago I finally decided that my refusal to engage therapeutically may not be a very mature or enlightened approach and conceded with myself that I probably do need to seek support sometimes. So I signed up for a three day retreat at the Penny Brohn Cancer Centre in Bristol and got a place on the waiting list. It is an amazing charity and a stunning place offering support to anyone with cancer but this particular retreat was intended for people with advanced cancer. I was braced for two to three solid days of talking, art therapy, nutrition and wellbeing, mindful breathing and walking. I’ll be honest it was harder than I expected. I am trying to get over my uncharacteristic resistance to talking about difficult things and to commit to listening and engaging. Maybe, I thought, it would do me good. But I wasn’t really ready for other people’s stories.

I’d sort of forgotten it was an advanced cancer retreat until I arrived but, although I am in a better position now than I was when I put myself on the waiting list, it is still a tough thing to meet others who have had a life limiting prognosis. Their stories cut me deeper than my own. I may not allow myself to feel sorry for my own plight but other people’s trials just floor me. Emotional processing by proxy. And such wonderful people, so full of life. It all seemed very unfair.

It made sense to put us together. Having cancer for the first time is a terrible shock and at that stage you don’t necessarily want to meet people who have had the outcome you dread. And you are dealing with mortality for the first time. This process, whilst profound and awful is very different to round two. The worst thing has happened and you are getting your head round a new reality. Preparing for the inevitable or for lifelong management of your condition until it kills you. I’m sorry to be so blunt but that’s pretty much it, I would say it’s true that secondary patients, especially those of us with that dreadful label ‘Terminal’ or ‘Incurable’, struggle a bit empathising with first timers as our situation is so different – you are cautious not to kill their hope by saying too much and they have not yet experienced the full horror. We are only equipped to let these things in a little at a time. Moving amongst a crowd of people for whom this is an open conversation was new for me. Amongst ourselves there was no filter. There was no ‘if’. There is only ‘when’ and although none of us know they day or the hour we do probably know how we are going to go in the end. I kind of assume I will do something dumb like fall down the stairs instead but I do expect the cancer will outrun me one day. At the moment I feel like the gingerbread man but will all know what happened there.

I wish I could tell you in detail about some of the fantastic, funny, brave, colourful, courageous women (and one even braver man) I met on this retreat but that would be breaking confidence so I shall have to preserve them in my memory and keep my account to the activities and my own response to the place. There were some big characters, people who wanted to talk and others who really didn’t but we were all struggling in our own way. No one ready to accept their fate. The human spirit is an indomitable thing.

Now although it might seem to you Dear Reader that I hardly shut up about my cancer I really only share my feelings here. We do not talk about it much at home other than in the most practical day to day way because I want life to go on as normal for the kids. I am very aware that the self reflection I have done has been largely internal and one way. Maybe it’s to keep people’s responses at an arms length. Maybe a desire to keep stories of other people’s cancer at bay. Other people’s emotions. I have really only been able to handle my own. Head down, straight ahead. I am letting the light in a little at a time so as not to be blinded.

So DAY ONE: I approached the afternoon’s introductory session with some trepidation. It was pretty hard from the off to hear about what others are going through and just how extensive cancer can get. None of us wants to accept we are dying or that our time is limited, Good, I think, don’t accept it. I prefer to go for flat denial. There are people with short prognoses, many of whom were already several years in defiance of theirs. I know too well what that particular shift in reality was like from the first couple of months when I was told I almost certainly had lung cancer and that probably meant a year or so to live. The land where medical professionals just keep saying ‘sorry’. I known they don’t like to give false hope but god I wanted some. ‘Happily’, it turned out to be the wrong diagnosis. There are 15 women and one gentleman on the retreat plus a small army of amazing volunteers. All of us on a second battle at least and with a range of cancers, none exactly the same, many with cancers of parts of the body I never knew existed. It’s an evil, arbitrary and inventive disease. We’re from all over the country and the inequality of healthcare becomes very apparent in our discussion in terms of the accuracy of diagnosis and the support available.

The first evening we had a healthy dinner, a sound healing session and a bit of a chat. After a couple of hours in agony walking/limping around Bristol before the retreat started this afternoon I was bemoaning the state of my non-cancerous hip and feeling pretty distressed by my worsening mobility. A last minute spinal MRI in the hospital confirmed it was nothing to do with the tumours on my spine. Just degenerative stuff exacerbated by estrogen blockers. I met three other women on the first evening who have had sudden onset arthritis from the same family of drugs. They don’t tell you that in the hospital. It made me feel better to realise that this is not just random additional crapness on my part but a result of the drug regime. Slowly, I began to see the benefit of sharing experience. I turn 52 next week and some days I feel 100. The sound healing livens me up. I had forgotten how well I respond to it and get many of the same effects as I did being with my healer, The leg jerks, the internal colour washes. And this time. Shared in common with others, a bit of pain. Like the tumours are bitching at being woken up. Sharp pokes in the toes, spine and fingers. The sound healer does some fairly unique singing with her harmonium. It’s bellows blending like a drone with her voice.

Day Two; ‘…if I stay here just a little bit longer, won’t you listen to my heart?’

The opening circle where we talk and really get into it is tougher than I expect and I am surprised how much my body is resistant to opening. I want to but I have this feeling I have built a fortress with very high walls made out of steel. I start to feel a cracking open as others become emotional and share their story. I am quite an emotionally open person but I am really not ready to let it all in or let it all out. My recent news was so astonishing I think I am only just beginning to process it. I tell the group this is where I am currently at to avoid going deeper. I think I must seem very tightly wound. The blog has been like sending letters out of the castle. The retreat was me just beginning tk open the curtains and peering out.

By day three we have done mindful walking, meditation, sound therapy, cookery and nutrition and art therapy (although ironically I skipped this evening fun to abscond to the pub to see my mate and take a breather). We’ve eaten a lot of wonderful food, talked drug regimes and misdiagnoses. It’s a powerful thing. Thanks Penny Brohn. How grateful am I that this charity exists. I’m just sorry I wasn’t quite ready to pour out everything that was in my heart. Grief and trauma takes time to work through and I think if I spill my guts on the carpet now I may not have the energy to get through birthday party/graduation and my father in law’s funeral this week. More later. Got to go and put a red cape and silly hat on for my PhD graduation now. A week can be a journey to the wilds and back but I notice I begin to tell people when I am struggling instead of pushing through. I allow myself to sleep. I also allow myself to relax and enjoy in a way I haven’t for a while. But more of that in the next letter from the castle of denial. I need to close the curtains again and have a nap.