Exploring guilt and cancer

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?

Cancer- you are not me

I am the breath

Coming back to the breath
creates a cradle for my pain
I rock and the rhythm soothes
The breath knows its 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

Reflections from a hospital bed

My Prime Minister has gone

with a catch in her throat

tears for a legacy that was a fantasy

tears for a career that exposed

her as a leader who didn’t lead.

But no tears for the food banks

so needed in our communities.

No tears for Grenfell and communities like them.

No tears for Windrush generation and their families.

No tears for the racism and inequality so many suffer.

And who will choose the next one?

Not the country, nor the Parliament.

The final choice is the Conservative party members

And really the Daily Mail  who tell us it’s Boris,

And so probably they will make it so.

But here from my window

On my hospital bed I see the stunning outline

Of my capital city, Edinburgh.

And I grieve deeply for Britain.

But we need our different choices to be honoured!

Mrs May said now is not the time.

Maybe she was right then?

But in this time when our votes

are ignored and our voices unheard.

Scotland- this is the time! 

Mastectomy blues and PTSD

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. 

https://www.health.org.uk/improvement-projects/inspire-–-intensive-care-syndrome-promoting-independence-and-return-to

If ever there was

Inspired by the What matters to you retreat in 

Old Lathrisk, Freuchie April 2019 

If ever there was a place to 

have a retreat it would be here

Old Lathrisk in spring

There’s a calmness even in the birds

Mostly they sing

Or chat amicably

Just occasionally there

Is the p’wee of the buzzard

An unforgiving warning

disguised as innocent cries 

And the writers

hardly making a ripple in the peace

We capture a small part in

a season reflecting ourselves

And once we leave 

Perhaps leaving a whisper of our conversations

But then the waves of this old house

cover our paths as if we were never here

Ah yes if ever there was a place 

to have a retreat it was here.

Walking the dog

At least you don’t have to walk the dog she said

I’d love to walk the dog

To see her run in circles of joy

Leaving her signature in the sand

I’d love to walk beside her 

splashing in the shallows,

chasing the seagulls and crows

who dance away- momentarily

only to return , laughing.

I’d love to throw her ball

Again and again

I’d love to walk the dog 

And breathe

Our retreat venue April 29-May 3

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: 

Wild Geese

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.