Showing posts from 2019

Christmas and Cara

Grandad cuddles are the best  I’ve noticed a reluctance to write about the last week. It’s something about making it more real. We’ve been going day to day enjoying the pleasure of sharing Christmas with our family, including  our grandson,Davie for whom every gift opened was worthy of of a ‘wow’ alongside the distress of seeing our beloved dog, Cara, go through a terrible time. On thé Monday before Christmas we took Cara to the vet hospital. Our own vet had referred her eventually when they were no longer sure of what the growth on her leg was. They gave us no warning of what was to come. The vet who assessed her told us straight away they thought it was an aggressive cancer and they did a series of tests to get more information. By the end of that day they advised that there was no spread and it was hard to know exactly but they thought it might be a sarcoma that comes from blood vessels. We had to make a quick decision as the time taken for the most accurate diagnosis may al

All I want for Christmas is a stairlift!

But not really. That £5k could have had very different purposes!  I really wanted a holiday where we could both relax. I feel cheated to be honest and then worried that the pain getting in and out of chair in the lift might be worse than how I feel later in the day dragging myself up our stairs when my spine is protesting. The alternative is to lose our dining room and set up our bed room there. The cat and dog loved it when we did that for me returning home after spinal surgery. Maybe we should just coorie in downstairs?  But for me the dining room is full of family times. Of Christmases when my Mum was still with us, of board games, of music and laughter. Currently the colour in Christmas table cloth is a scene of individual creativity and a symbol of community: of loving family and loyal friendship. How can I lose that? That’s the loop I go round.....I guess I will make decision once I’m less angry about having to make such a choice. I need some scream therapy I think! 

Friday Thirteenth

Friday thirteenth  The date itself a portent the exit poll even more. And yet Hope was there in our attention to nuance, to the Professor of Polls, in our racing hearts. I KNOW it’s hope that kills but what is there without it? It’s a black hole of anger or bleak acceptance, a desert of despair. We need hope. As England hung its flat cap on getting Brexit done. We drank deeply on disbelief.  How can this be? This landslide of leave,  a mystery, a heart rending loss. And slowly Scotland showed it’s different hand. Our scarred lands of decayed industry, of Highlands cleared of people for profit spoke in a different voice: it spoke of choice, of hope. It’s a confident voice. Not one with begging bowls but of rights to be heard. It’s the voice too loud to be unheard. It’s the insistent song, of a land ready for change.

Why getting Brexit done is not my priority, should it be yours?

So last Friday-just before Christmas- I got this letter. Your PiP ( personal independence payments) has been stopped, you owe us money, your car will be returned....... It hit me like a steam train, one with a snow plow on the front that brutally scoops you up and throws you off the tracks. That takes your breath completely away. I panicked, my breath hard to catch, my pulse racing, my mind unable to make sense of it, I started to sob. But how? I tried to read it more closely this time. I gave it to Andrew to try to make sense as well. It seems I didn’t return the form. But I did, I sent it off in good time ( you get threatening letters about being late with the form) but this letter said differently. I was shaking, trying to read and make sense whilst attempting to calm a racing brain. I went online to read about when your form hasn’t been returned. I finally found a phone number and called. It was Friday evening but it seemed, if I waited I could speak to someone. I waited, I dr

Behind the camera, behind the lens

I’m the annoying one in the family that takes the photos. ‘Just stay still a moment till I take your photo’, ‘oh that will be a great’, ‘oh try again’, ‘oops the dog photo bombed’ you know the drill? On reflection I think it started when my Dad was first diagnosed with cancer. I realised that all our time together was uncertain so we should celebrate good times and remember to capture it on film too. I’m grateful we did. His last years flashed by like glimpses from a train carriage, sometimes just so fast no memory or image remains. His last photos showed the effect of illness and medication and that hurt. But within those we caught one where he sat with the dog at his feet, content with the world. The dog was my families but we all knew really his primary attachment was my Dad! That photo comforted me for many years after his death. It sat on a table by my chair. It’s 25 years now since Dad died but the urge in me to capture special moments remains.  He was always my go to fo

Pink ribbons, black dogs and equity

I’m writing blogs in my head at the moment but then somehow they don’t find their way to the page. Getting through each day is taking my energy and I’m busy trying to hold on to a life that remotely looks like it used to. This week however I’ve managed to cause something of a stushie (Scots meaning a row) by challenging the pink wash of breast cancer. I was interviewed and mentioned that I didn’t wear the pink ribbon at all this year and feel that the pink hue that has become breast cancer awareness month is at risk of trivialising a very serious condition.  The Times of a London decided to cover it as me calling for the pink ribbon to be scrapped! Which I didn’t and absolutely agree that the pink ribbon has become an international symbol and as such has helped to raise much needed income and awareness and that’s much to be thankful for. And Estée Lauder when they introduced it in 1993 did not set out to declare that thereafter everything Breast Cancer needed to be pink and flu

A Poem for Mental Health Day-Gratitude

A Poem for Mental Health Day  Gratitude Daylight as I rise And as soon as I stand I remember  My spine protesting Against being upright Another day starts From the window I wonder at the colours Of the autumn trees Majestic as they face winter I’m less aware of the pain My heart less heavy Koshka head-buts me Affection maybe or just about food He stretches out a striped paw Exquisite markings remind me Of the beauty of this cat That we share our lives with  I smile and feed him, he purrs Next he creeps into the dogs bed  Cara bounds in and starts to kiss him Disgust his reaction I laugh out loud Our typical day begins Later with the very special Andrew In the Botanic gardens Glorious autumnal trees surround us We look around and feel grateful For the richness of this environment Relaxing into our place in this world My pain and disability can pull me Into really dark places The black dog never far away

Breast cancer and body shaming?

I’ve been quiet over the summer on the blogging front. A combination of a relaxing holiday ,a wonderful family wedding and family visits are probably part of the reason but if I’m honest that’s not all. But it is what’s kept me going. Really for a few weeks I’ve only wanted to say, ‘I’m tired’ tired is tired.   My words disappear into tiredness That seeps into bone aching weariness My wellbeing lost for now And I find it difficult to write about this. Not to protect your sensitivities, dear reader, but because at this moment it doesn’t help. But nor do I want to be one of those happy clappy cancer survivors whose life has turned around and now they are dressed in pink and expressing gratitude for the whole experience. If it gets you through-that’s fine by me-but I can’t do that.  I just want to express my truth in a way that helps understanding. After all, we don’t expect people following spinal injuries ( as I have as a result of a benign spinal growth) to dress like

Is it accessible and holiday tales!

It was right up to the wire, would I go on holiday? My wound from my mastectomy in May was still  open and had been infected. But at my final clinic visit before the planned flight I was pronounced good to go. So with EHIC ( good till October I guess?) and all sorts of medication and dressings off we went; airport assistance worked a treat and Jet 2 were excellent. As soon as I could I was in the pool. The only place I’m not in pain. I should have been a mermaid... My first day I was in three times. Hallelujah.  A few days days in I noticed a swelling at another part of the scar. F..............K! It burst and so began another round of antibiotics and an array of dresssings applied. My swimming days were reduced to paddling. I remained vigilant but 12 days in I was running out of antibiotics and another area of my scar was swollen and suspicious. I phoned the clinic in Edinburgh and they advised I see a health professional and see them AGAIN on my return. We were in rural Bulgaria

In praise of family, friendship and flowers.....

As you know I’ve been up and down this summer, post mastectomy wound infection and all the accompanying physical and psychological sequelae. What has helped me during this spell is of course my family, including the giggling grandson and cuddling granddogs! AND my quite incredible friends and  Some of the highlights so far have been the trips to the caravan in Crail, with fresh crabs, dolphin spotting, bird watching fresh strawberries and some perfect time just gazing at the sea. Oh the East Neuk of Fife is so very special and the Fife accent is that connection to home and childhood. All very healing. I’ve had very special walks through the Botanics with groups of friends, each time a discovery of new gems about the flowers and plants, often with cake or lovely food a special part of it. It’s a short walk or scoot away but becomes a different world on each visit as plants change and weave colours over the seasons.  Family have visited to walk moonwalks and to cele

Being an invalid?

I’ve been feeling like an invalid of late. It’s a sho cking term, in valid, like you don’t count anymore. This was somewhat reinforced by insurances companies telling me this week that they won’t cover my existing conditions for a two week break in Europe ( FFS). But what do I really mean by invalid? I’m weary. Wabbit to use a Scottish word. Poorly is another term I rather like as it feels a kinder expression of how I am. But I’ve used invalid because I imagine I would do well draping my painful body on a chaise longue and eating peeled grapes. Some might say I’m already doing the equivalent of that!  However in my defence, I’m now on my fourth antibiotic since my surgery and still my wound needs drained. The current one is Clindamycin and I have a rotten taste in my mouth permanently. This too will pass, I know, but I want it to pass now!! My oft heard cry is, « I want to get on with my life » and in truth I’m trying to do that, with a severe level of pacing myself.  It’s a st

What do Goldilocks and breast cancer have in common?

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 b

Fat shaming and cancer?

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.

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’

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!