Thursday, 10 October 2019

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
But each day I’ve learned
To value all this love and beauty

And focus on that each minute, each day, each year..

Monday, 23 September 2019

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’.....my 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 fairies ( ok- ok, but you know what I mean) and express their gratitude for the resulting chronic pain and disability. 
What is it about breast cancer that means you have to be so relentlessly cheery, wearing pretty headscarves so no one is offended by your baldness. And even the prosthesis, holds a societal pressure for me so I find myself wearing it when I’m working or socialising so no one will know my breast has gone. It’s undoubtedly part of how women are viewed and judged in our society and a dawning recognition in me of how much I have internalised that. 
When I was a director of a breast cancer charity,I admit, I enjoyed some of the pink sparkliness having mostly worn black ( it goes with everything) before that. I embraced it for a time, excited 
to buy the latest fashion targets breast cancer T-shirt or whatever else I could afford. In some 
ways it helped balance the day to day working with breast cancer and those people whose lives had been devastated by it. I’m sure for many of us in the field having some light in the shade of 
living with cancer was what drove the desire for sparkles, and why not. But in time is wasn’t enough.
So this week I wrote about and attended an event exploring weight stigma and body shaming  and experienced a very personal aha moment. It was a realisation of my internalisation of the need for the perfect body and the shame attached to falling short of that. Am I alone in feeling shame at having only one breast? Also I’m currently on two medications that support weight gain and because of pain and loss of mobility I do very little exercise. So I’ve gained weight; older and fatter is how I see myself. Not one person has criticised me for this, or judged me. They don’t need to, I’m doing all of that to myself. I even wondered about joining slimming world whilst writing about how yo yo dieting does not work, in fact it tends to increase weight gain in the long term. 
What does work, however,  is self care. Enjoying healthy food and activity, being kind to yourself, practicing mindful ways of being in the world. So yes knowledge about food matters but the goal needs to be health and wellbeing and not weight loss. A focus on weight loss rather than health, reinforces our already damaged relationship with food. Yes there is an issue with childhood obesity but there is a much bigger one with eating disorders in children. I know this and yet I’m also a victim of it, my self critic in full voice.
So awareness is the beginning of change and this week I’m being kinder to myself. Long over due! I’m also going to raise funds for Maggies, taking part in their culture crawl. I’m on my mobility scooter! If you want to see more and even make a donation, no mater how small please support us if you can. https://www.justgiving.com/fundraising/audreybirt2019 



Wednesday, 4 September 2019

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 but have towns nearby and Varna in easy reach. My feeling as we sat in the waiting room of a small town, was maybe we should have gone to Varna? The building was circa 1950s with a hint of utilitarian totalitarianism. No doubt it was just the thing in its day and the lady carrying the mop in her square white coat spoke of a futile commitment to cleanliness. The chairs were worn and the burst plastic hinted at many generations who had sat quietly waiting their turn.
We were eighth. However we learned that children and pregnant women had priority. I waited in my mobility scooter and settled into acceptance as so many had before me.
In time we were hustled in to a room with a nurse wearing a mask. DOCTOR she annunciated as we asked about speaking English. Again we waited. The Doctor said of course to my query of speaking English. So I succinctly explained, he asked to look. A solution was found and prescription written for a silver spray and antibiotics until I was back at my clinic. This all took about 60 seconds. He was from the “do what I tell you and STFU” style of medicine!
How do I pay you, I asked? Cash. 20 leva. Ok, we handed over the equivalent of less than ten pounds and left through a throng of mothers and children. His day was not getting quieter. 
The antibiotics cost 7 leva. The silver spray not available so we gave up. Total £13:50, I won’t be making a claim.
I was a health visitor in the UK in the 1980s and worked in similar places but none quite so neglected. But the residents were modern, stylish, helpful and keen to do right by their families. Bulgaria is in the EU but missed the boom before the bust. Our experience is so resonant of experiences in this very beautiful country. They are a resilient population and settle for so little. By contrast we seem so entitled. We in the UK rage against the EU at the same time as enjoying so many benefits, not least the interconnection and the peace. 
But we have created a health service which has improved not only in infrastructure but in its involvement in decision making, in self management and in coordinated care. We’ve a long way to go but this experience made me grateful once more for the the skilled support I have-in a comfortable and respectful setting as well. It’s what we all deserve; especially the hard working, kind Bulgarians we have met over the years. 

Who knows what will happen travelling after Brexit- if indeed it happens- but right now we are back, staying home feels very appealing. Travel and staying different places is so hard with a disability but it could be different if our society made accessibility a high priority. My daily fight with non-drop pavements and wheely bins suggests we’re a very long way from that! 

Now back to the news.......

Monday, 12 August 2019

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 ......flowers. 
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 celebrate with hen parties. Such fun! And I’ve been to Peebles hydro with the women in the family. What a beautiful spot it is with views from the room that could capture you for hours. Sadly monsoon conditions cut our ability to explore the next day so we just need to go back. Especially as we did try to tackle some of the political challenges ( yes they haven’t passed me by!) and clearly with the current unholy crisis it’s going to take us more than one night to fix it! But my daughter and I managed to fit in a wee shopping trip instead which I loved!
But now the flowers..
Our very special neighbour not only shares a love of dogs but also a love of flowers. She has arrived now more than once with beautiful hanging baskets and training begonias for window boxes and the







most beautiful lilies I have ever seen. 
My back garden and front step and window boxes have never looked so lush. Another of our wonderful friends took me to a stunning garden centre at Hopetoun House and together we chose a selection of plants with a strong focus on geraniums. She planted them for me on a marathon session and the combined result is simply glorious. A month later she returned with some second hand planters and planted out more flowers. I was overcome!
And the final flower story is our friends who became known as the garden elves helped Andrew take down a large dead bush in our front garden that housed a whole ecosystem with fox visitors included. But their job did not finish there; they then helped us choose a whole range of plants to replace the old bush and we have a totally renewed garden,complete with a bird table. It’s joyous, it really is. 
Happily I have recently discovered a bonus for my long suffering family and friends. If they invite me out they get to go free in many venues, as my carer. So another friend invited me along to Marianne and Leonard ( Cohen), a love story. It is revealing, tender and deeply moving. I’ve been playing So long Marianne ever since. 

So my summer has been rich and full of love, friendship and flowers and I’m full of gratitude. This blog is a massive thank you to all of you kept me company, who have walked moonwalks, who have sent books for Davie, who have delivered and planted flowers, who have taken me with them to do special things,who have cooked dinners, painted toe nails, the NHS teams who have never let me down, to you who have brought your company and all the family,who have been my rock all along, who have been there for me during this difficult time........ you’ve helped us get through and I/we can’t thank you enough. 

Sunday, 21 July 2019

Being an invalid?




I’ve been feeling like an invalid of late. It’s a shocking 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 strange word, invalid. A word reflecting Victorian times, evoking thoughts of crinolines and pale faced ladies with parasols. It suggests the adoption of a role for life which our approach to illness would now abhor. But I’m drawn to it as at least it’s permission to rest and recover.
By contrast, I asked the oncologist if there is anything I can do to reduce my risk of recurrence beyond the surgery and medication. 
Exercise he said, not without an embarrassed acknowledgment of my damaged spine, but in fairness, honouring what I need to know. I’m longing to get back in the pool, one of the few times I’m out of pain, supported by the water. But that’s not yet safe for me and the hand cycle I used pre op last year, is guiltily tucked away in a corner. Is it strange that we only have evidence on exercise but has anyone studied the need to rest and recover too? There’s a damaging paradox in cancer recovery where so much of the treatment causes longer term harm and yet the expectations are to get past that and get back to normal, get on with life, to run or walk marathons, to ring bells and move on. The only time I cry thinking back to the first time I had breast cancer is when I recall how tired I felt....all the time. My life for many years was fighting fatigue and I really feel that damaged my wellbeing for a very long time.
So my plea is a balance in the expectations of recovery, to rest when needed, to exercise in a way that lifts your soul, to do what you love to do and most of all be kind to yourself and others. 
As Mary Oliver says in her poem the Wild Geese. 

Go well...

“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.” 
Mary Oliver, Wild Geese




Saturday, 13 July 2019

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 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.



Friday, 12 July 2019

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. 

https://www.alliance-scotland.org.uk/blog/opinion/challenging-weight-stigma/