Wednesday, 15 May 2019

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

Sunday, 5 May 2019

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.




Wednesday, 17 April 2019

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 

Sunday, 24 March 2019

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. 

Sunday, 10 March 2019

But it doesn’t match!

Remembering my Mum. 






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!

Tuesday, 5 March 2019

At least.....

« 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 


Friday, 15 February 2019

An unhealthy denial: Brexit vs Cancer

There is something quite synchronistic about going through this uncertain, painful and frankly scary time in my personal life at the same time as Brexit approaches. The runaway trains on similar tracks creating a shared sense of defencelessness. 
As I explain my health situation to people I see the shock on their faces. I notice that mostly they can’t even reach for an « at least... » ( I’m grateful for that ).  Usually they are lost for words. And so am I. I have no convenient words to soften the impact; no cheery words to minimise it.
And then there’s Brexit. I vary between avoiding all mention of it and watching the news from behind the sofa-a strategy last used when I watched Dr Who as a child-, to avidly watching votes and amendments in Westminster holding my breath. Neither approach feels wise or healthy. 
I recognise a similar paradox in how I handle each situation. With Brexit I try on the one hand to ignore it and recognise I can’t change anything. But another part of me, the campaigner, wants to lead the march to London to say this just isn’t good enough. 

A sort of Edinburgh-Jarrow-London March including all of us remainers who feel unheard and equally those leave voters who want to be heard too. It was a cry of rage from the north of England. I’m sure they weren’t voting to be ignored, poorer or have reduced human rights. Our democratic deficit is a chasm and it’s just NOT good enough. We all deserve better than political parties paralysed by their own self-interest. There’s also a stark denial of the seriousness of this situation. 
And then there is my own situation where I want at times to just stay still and be mindful and even netflixful! And knit-badly- too. 
But then I engage with the outside world for fun and even for work and I feel lighter. I’m no longer simply a sick person, I’m engaged and stimulated and enjoying life. My constant challenge is to get that balance right for me. I’m also guilty of practicing denial of my changed circumstance and the seriousness of my own situation. 
BUT if someone else is organising the March, let me know. I will be there on my mobility scooter driven by a combination of a need to be heard and a renewing passion for life, in whatever form it takes. 


Saturday, 26 January 2019

In the genes?


 Cara catching the mood


I kept thinking, there’s a great pun in the whole genes/jeans thing but could I find it? I’m trying to find the light side of this. Like does my bum look big in these genes or similar, you know. ( surely the answer would be yes just now so I won’t go there!). Frankly I’m avoiding jeans right now because they trigger nerve pain. Apparently my brain is confused by my recovering ( hopefully) nerves and it’s not just going you are too old for jeans now, it’s more ahhhh thats sore, stop it. 
Usually discussions on genes in this house centre on whose eyes our Grandson has ( his Dad’s definitely) and his dimples are his Mum’s. But this year genes took on another meaning. After my recent cancer diagnosis I was tested for the BRCA genes.The BRCA gene test is a blood test that uses DNA analysis to identify harmful changes (mutations) in either one of the two breast cancer susceptibility genes — BRCA1 and BRCA2. My family history is in no way typical of the normal pattern but hey who wants to be typical. Because I found out this week that I have the BRCA2 gene. 
Another wave came over my head and this time I struggled to get my head up. I’ve been exhausted and overwhelmed. I really didn’t know if I or the family could face any more. So we booked a holiday! 
At one level it makes sense of recent years; this gene is the gift that keeps giving. At another level it means more surgery in the future to remove ovaries and fallopian tubes and may affect my recently agreed treatment plan. But much worse than that is the impact on my children and wider family. My children are kind and wise people and they proved that this week yet again. They each have a 50% chance of having the gene and have now been offered genetic screening themselves. That is the part that grieves me so very deeply. Since my first diagnosis of breast cancer I have struggled with wanting to protect my children, when that wasn’t in my gift. I’ve had to remind myself of that again this week. Believe me that’s been the hardest thing of all. 
It was fortuitous that I went to see Les Misérables this week. The second act was a cathartic release for me, I think I probably cried the whole way through. Come the song « Bring him home » I was lost. 

And now I’m mindfully knitting a baby blanket and staying in the moment and that’s enough for now. 

Saturday, 19 January 2019

I blame the medication

Waiting for spring


So last week I started another medication. I am the personal cause of the medicine shortage, never mind Brexit. My cancer treatment has begun. I’ve to take this treatment to shrink the tumour so that the surgery can be minimalised and safer for me. Hormone treatments like tamoxifen or aromatise inhibitors are now seen as effective for oestrogen sensitive tumours as several months of chemotherapy and I’m grateful for that. My fragile state could be tipped over by a toxic chemo combination. 
I’ve been on these drugs before and stopped them because of side effects but that’s not an option this time i know. 
I’m now on exemestane which has the best side effect profile of all. With this drug the common side effects are « only »: aching or pain in joints and/or muscles, menopausal symptomes, low mood/depression, difficulty sleeping, fatigue and osteoporosis. There is a list of less common ones but I can’t even face writing them down. I wrote about tamoxifen before and it’s my most read blog so I know I’m not alone in my battle with these drugs. I’m not sharing this to seek sympathy, although if I dose off when I’m speaking to you I will seek understanding! I’m sharing it to remind myself that this particular journey won’t be easy and I need to allow for that. 
And it’s also to help you understand how it is for so many women on these treatments. These effects are life changing for many and yet they’re expected to wear a pink ribbon and smile or even run or walk marathons-wearing pink of course. We must all wear a brave breast cancer survivor uniform, get back to work, bring up our families, care for our vulnerable and workout of course. I might just design a T-shirt with « this is shit » on it, in pink of course. I suspect it would be popular. 
Of course I’m also trying to get more mobile and I managed this week to get to the pool. After 4 sessions at hydrotherapy I’m feeling stronger than I was. At least that’s progress. 
But I’m on two medications that can cause weight gain now and, yes, my time at the pool is a personal marathon but it’s not going to counteract my cheese habit. So I’m currently on the search for a diet that includes blue cheese, Christmas cake and a nice dry Sauvignon blanc. If I find it I I will let you know.I take it as a personal outrage that even with a fourth diagnosis of cancer I’m not thin. Or even thinner- I would settle for that. But I’m using it as an excuse to shop which I blame the medication for too.

Welcome to my life. Time for a lie down. 

Sunday, 6 January 2019

Stalked by a killer

I’m being stalked by a killer. The regular attempts to wound me have worked to take away my confidence and my pleasure at so many things. But all along I have kept going. Nil illegitimi desperandum and all that. I’ve put on my make up, done my hair, squared my shoulders and kept going; whatever the cost. I’ve gone to work, I’ve met friends, I’ve covered up my bruises and scars and lived my life. All the time knowing that the killer might return at any point.  Might just show up unexpected and yet familiar. So familiar to be honest that I’ve become desensitised to the risk when the killer reappears. I know how this goes, I’m deeply wounded physically and of course mentally and I eventually recover because this killer is trying hard but it hasn’t managed to kill me yet. And when I say recover I’m not saying I return to how I was before. Oh no. I get my life back in time but each time leaves me scarred and scared. I find my mood flattens and everything gets just a bit greyer and sadder. And then time passes and I start to see a future again. And that it seems is when the killer returns to remind me not to get complacent; to not to take my life for granted. 
So as you’ve probably guessed, this time it was just a few days before Christmas. This was to be the Christmas remembered as being my grandsons first. Full of cute baby photos and smiles of the anticipated future filled by first steps, first words, first stories read. And it was- but this time it was also a shared knowledge that the killler was back. Although I had hidden it in that dark cupboard away from view but if you listened closely you could still hear its presence, waiting to be acknowledged once the tinsel of Christmas was packed away. 
So this week it was confirmed I have breast cancer again. This time in my right breast, it seems not to have spread and is treatable. And the treatment shouldn’t have to involve chemotherapy. All reassuring. Next week I should hear what my options are. 
I met the breast care nurse sitting in my wheelchair as I recover slowly from the not entirely successful removal of the benign growth stuck to my spinal cord. I’m in constant pain and walk only with mobility aids. I said « this is the point where, if I was a Labrador, we would say that’s it they’ve had enough. » She half smiled and said, no we don’t do needles in the paw here. You can do this, you’re a resilient woman. 

I nodded but also I do admit for a moment I was very tempted by the ease of that needle in the paw.