I’ve had breast cancer 4 times, each a separate cancer ( I have the BRACA2 gene mutation) and this time is the first time I’ve had a mastectomy. I’ve had two wide local excisions and a mastectomy with immediate reconstruction but this time I knew I couldn’t handle that. A long operation on top of still recovering from spinal surgery last year was not wise.
So I opted for a mastectomy. The surgeon did an amazing job, using a «Goldilocks » technique which creates the shape of a breast with your own tissue and allows a good ( ish) cosmetic look with a form to help keep a prosthesis in place. And it’s worked apart from dealing with an infection currently that’s got a good grip on my breast and my wellbeing.
I’ve treated it a bit like a small child; called it my booblet even which is my current fond term. So it’s some inanimate object, like a teddy bear I need to care for. I have found many forms of denial over the years, this has to be my best one. But like all forms of denial the bubble gets burst eventually. This week was when I caught a glance of myself in the mirror and felt shock go through me. Where’s my breast gone was my sudden, heart stopping thought. Just as quickly I recalibrated and remembered. But the shock remained in my body. I don’t want to hide from mirrors and I know in time I will accept more fully how I look ( will I?). I’d prefer a symetrical look but further surgery to my left breast with no guarantee of a good outcome ( because of previous reconstruction) is just not an option. So here we are, Goldilocks and me and a whole new story to write. Goldilocks and the three antibiotics maybe? Goldilocks and the four cancers? All I know is three bears takes on a whole new meaning here, so here I am with a mythical teddy bears, baring my soul in this blog but very reluctant to bare my body-even to myself.
I was asked to write this blog for the Health and Social Care Academy, which is a programme focussed on transformational change and is part of the ALLIANCE. It’s about weight stigma but not only I cancer. I would love to hear your thoughts on this.
Since my first diagnosis of breast cancer guilt has stalked me. Even when I’ve thought I’d put that beast to rest, up it pops in various guises. My guilt as a parent for causing my family to suffer has been a long term one. But it’s probably speaking to them now as adults that has helped me let go that burden. And in many ways seeing them as kind and sensitive people people i realise dealing with difficult times and illness has contributed to who they are. Carrying the BRCA2 gene tipped me again into a spiral of grief and guilt but somehow staying with that and recognising that for what it is has helped me move through it. I didn’t choose this any more than my father did. And what I learned years ago was that we can’t protect our children from everything all we can do is love them and help them to navigate it as best we can. And I’ve just had to relearn that one with my BRCA2 diagnosis.
Survivor guilt is another layer again. As I’ve lost friends and colleagues to breast cancer I’ve grieved for them with an added complexity. What made the difference? Why did I survive and not them? In some ways I’m embarrassed I’m still here, four diagnosis later. I mean, WTF?
I’ve just had my results post mastectomy and I’ve no lymph node involvement and my margins were clear so there would be little benefit with chemotherapy and no radiotherapy needed. I remain on endocrine therapy of course and also to have some preventive treatment for my bones. That’s all! In any other context that would be a lot. But not if it’s cancer, I’ve got off lightly and I know it- and yes you guessed I’m feeling a bit guilty too, compared to others who are having to deal with so much.
It’s a form of madness to feel guilty you haven’t died, to feel guilty your treatment isn’t as bad as others, to feel guilty you’ve survived more than 20 years since your first diagnosis. I know it makes no sense but it’s easy to carry guilt along with everything else. But it serves no purpose and is fuelled by a media that feeds a view of the cancer experience which is unrealistic, overly simplistic and laden with judgment. You’ve got to fight it, you’ve got to be brave, you’ve got to protect others from your pain, you’ve got to hide your baldness under a pretty scarf, you’ve even got to walk through the night in your bra to evoke sympathy. ITS EXHAUSTING!
When the practice nurse dressed my woundthis week, we discussed our shared experience of breast cancer. It’s tough, we agreed. So let’s leave that there. The truth is it’s tough, let’s stop imposing expectations on everyone who walks this path. They need to find their own way, they need to be kind to themselves, they need compassion from all of us and they need to celebrate when they can count the years from their treatment and feel well. Guilt is when we carry the « shoulds » of others expectations. Let’s just stop and have a compassion for all who travel the journey imposed by a breast cancer diagnosis and grieve for those we lose and celebrate the life of those who recover. It’s simple, isn’t it?
Coming back to the breath creates a cradle for my pain I rock and the rhythm soothes The breath knows it’s healing gift Pain and suffering are not the same With each breath I accept the pain that’s here and is to come I breathe with the fear of the cancer I know you, I feel you But you are not me I am the breath moving with the light of life sustaining me in love and kindness
So tomorrow was to be my day for surgery but now it’s delayed until Tuesday next week. It’s not long I know but I’d had so many conversations and hugs wishing me well, I had packed my bag, I had packed my Wonder Woman pants for safe measure, I had hugged my grandson especially close. And now I have days free I didn’t expect; a sort of stay of execution and I’m feeling rather lost if I’m honest. Even the fact I’m home for thé Eurovision song contest isnt enough to ease the situation. Part of me wants to sleep until next Tuesday. It’s the impact of this surgery I’m dreading so I’ve another few days with two boobs. I will be able to hold my grandson for a little longer, until surgery makes it too painful for a while.
Strange how the worries shift as I age. I would have been devastated to need a mastectomy in my thirties ( and my greatest fear was not to be there for my children) when I was first diagnosed and I do still feel a large element of that loss. But now it’s less about body image and fear of dying and more about how I can be the best Wife, Mum and Grandparent in this time I have, as well as Sister, Aunt, and friend . A bit cheesy maybe but honestly it’s all about time with those you love and I’m blessed by good people who have helped me put one foot in front of the other this last year.
I said towards the end of last year that I thought I had post traumatic stress disorder. I recognised the signs https://www.nhs.uk/conditions/post-traumatic-stress-disorder-ptsd/treatment/ , mostly feeling sick and trembling if I thought of my time in intensive care.https://www.health.org.uk/improvement-projects/inspire-–-intensive-care-syndrome-promoting-independence-and-return-toArticle on support after intensive care . Mostly I’ve locked it away and hidden the key but I know it’s there. I’m noticing the signs again in myself as I prepare for surgery next week. Practicing mindfulness regularly is helping but I suspect it’s not enough. Talking therapies feel almost too exhausting just now. Distraction is great for the pain i hold; be it physical or emotional but I also need to rest and sit with how I am.
Writing is helpful and since I was a wee girl and went each week to the library with my Mum, I’ve always wanted to write a book. I absorbed the whole children’s section and took my love of libraries and books into adulthood. So far as well as writing my blog, I’ve a draft memoir half done, I’ve an idea for a children’s book and another on wellbeing with long term illness. Maybe one of these days I will find the energy to complete them? But meantime I’ve got writing this blog, so thanks for reading and being on the journey with me. I will keep you posted.
After my last diagnosis of breast cancer I noticed a pull to pay special attention to my body’s reaction. Any surgery and diagnosis of major illness is a trauma which we hold in our bodies and perhaps not one we recognise enough.
I was told a few weeks off normal activity and I would recover. I ached to take some time to just be still. I joined a mindfulness course (With Youth Mindfulness) which had four retreats in the year. I had applied before I was even aware of what I’d done. During the year I certainly deepened my mindfulness practice and I learned how to deliver the training but mostly I recognised an almost primal need to pay attention to not just my mind-but also my body.
That experience drew me to approach my creative writing tutor Helen Boden ( i go to her class in which we write about art around galleries in Edinburgh) with the suggestion we jointly facilitate a retreat with creative writing, mindfulness and coaching. We’ve built up from one day to a weekend and this year at the end of April we offer a Monday to Friday opportunity to restore, reflect and review in the most beautiful of settings near Falkland in Fife. Jo has established a beautiful and mindful home which we join for the week. We eat lovely food, walk ( if you can) mindfully in the glorious area, we write, we challenge ourselves to find our own path and we restore and recalibrate self care. If you want to join us; here is the link. We keep it a small group and there is excellent accommodation in Jo’s house as well as space for local people to come each day. I’m so very much looking forward to it.
I’ve recently read « The Body keeps the Score » which makes a compelling case for not only talking therapies after trauma but also helping to release trauma from our bodies. That’s not only important in relation to adverse childhood events but also those living with and through the trauma of serious illness or adult traumatic events. I recognise my healing from surgery is mind and body and I’m now f that retreats are a very good way to meet that need. My recent retreat in Cumbria (with the Sacred Space Foundation) helped me leave behind a fog or exhaustion and helped face the next few months with my head up. Healing is so much more than medicine. It’s time to waken to that ourselves. In Mary Oliver’s words in her poem:
You do not have to be good.
You do not have to walk on your knees
for a hundred miles through the desert repenting.
You only have to let the soft animal of your body
love what it loves.
Our busy lives can serve to us ignoring our needs. My learning in my long and ongoing journey with pain and treatment for cancer is to improve, we need to give space and time to enable healing to happen. Medicine is not enough to do this. We need to create our own way of healing and it takes time and focus and self care daily. It’s taken me a while to understand this and in many ways I’m learning every day but I’m so grateful to know this now.
Wishing you to the opportunity and space to heal if you need to....and let’s be honest that would be most if us in some way.
I have a thing about things matching. I blame my mother of course. Throughout her life, until the end-two years ago this week- she liked to look nice. In our last photos of her she is wearing a beautiful cashmere cardigan in a variety of pastel colours that we had given her the previous Mother’s Day. In spite of the evident fragility you see the beautiful woman holding on to the sense of herself she had managed to retain.
So even as a slightly scruffy student, when my most treasured fashion item was my afghan coat I needed to ensure I accessorised in an ordered way. My mother never approved of it. Perhaps the smell it emitted didn’t help. It finally left home to make room for a tidier more practical replacement and order was restored.
So I’ve been indulging in some retail therapy, in anticipation of my surgery in May. Given the gene mutation I carry I’m to have a mastectomy to reduce the risk of recurrence. But I’m not strong enough to have reconstructive surgery. So I will have one reconstructed breast and that’s it. I won’t match. I find myself searching for nightwear that will be comfortable post op and look less imbalanced. It’s a tough call I admit. And although I’m a strong believer in every crisis is an opportunity to shop, I strangely find myself at a loss. I know I will get a prosthesis and the scar will heal. But what happens when it’s just me and the mirror? And the reality of a body that is testing my OCD-ness beyond my edge. My current longer term plan is to have a tattoo. In my reflective mood I think I might have something like a wild rose working its way from my missing breast over my shoulder. But some days I just want to write F*** off Cancer.....sorry Mum!