Wabbit and crabbit…

 

Recently our grandson had to come home from nursery early. He’d had vaccinations and h temperature was up. He announced as he walked back in the door….”I’m ok, I’m just a wee bit wabbit.” My heart melted with this announcement. Partly because wabbit spoke to how I feel too -the perfect word. As well as delight at his use of the Scot’s word. It was the reminder too of how Scots permeates our day to day language and how uplifting ( and very cute) it was to hear him use it. We’re a land of many languages- reflecting the many influences on our island nation. He may even learn Gaelic in the future, it’s a language taught in his future school, something I could never even have contemplated for my children or for me as a child. 

In a time when we are seeing a sovereign nation ( Ukraine) being violently invaded by Russia, ripping out it’s very core , its made me grieve deeply for the people and it’s touched that Scots part of me that feels an affinity to a country that was finding its feet as a culture again and scared by how fragile that now seems. 

I wonder if it’s true for nations, as it is for people, that we can never truly love others until we love ourselves. The Scotland I grew up in was not one that loved itself or it’s heritage, frankly we didn’t know much about it. At school we learned nothing of our history, our literature, our music and were criticised and even punished for not speaking English. That’s hard to believe now as so much of our culture is re-emerging and the “Scottish Cringe” is becoming less evident. A friend brought my attention to a Proclaimers song called Scotland’s Story. https://youtu.be/hcZF42F_o00. It really moved me, as an island nation we are a wonderful mixture of not only the countries of the UK but from across Europe and beyond. The song lists the many folk who make up our land, including Ukraine. “We’re all Scotland story and we’re all just the same” such a powerful message to all who want to call this place home. 

As a family we have applied to house refugees ( I know…..are we crazy, we’ve so many challenges with our health but we need to help and we’ve a warm homes and big hearts). I welcome that the Scottish government have an arrangement as super sponsors working with the UK government scheme https://www.gov.uk/register-interest-homes-ukraine. “Our hearts were already open – now our doors are too,” Nicola Sturgeon said. https://www.gov.scot/news/scheme-opens-for-displaced-ukrainians/ This includes information for Ukrainians who want to come to Scotland for refuge and how they can now choose that option. I do hope so many are able to be helped. Not just the Scots but the British peoples hearts are much more open than the governments processes are I’m deeply sorry to say so we all must do what we can to have our voices heard and get visas waived for now. 

And in other news, I’ve more surgery to face next week. A biopsy has shown a  small but cancerous tumour in my breast. It showed on CT which was reported after my first operation. It’s another triple negative tumour but different to the earlier one. Prof Dixon has never known this before. I have no words! My brain keeps trying to make sense but fails. And with other health things in the mix I’m feeling overwhelmed and my body battered adjusting to the medication for, recently diagnosed, inflammatory arthritis- likely rheumatoid. So my outward appearance maybe reasonably calm but it’s a swan like performance. And there is a bit of me that feels like a Munch painting. 

You know the one! But the intramuscular steroid injection has helped a little with generalised pain and mobility which is so very welcome…I’m taking that as a win! 

And the sun is out this weekend and I plan to get out and about whilst isolating before my operation. Covid is everywhere here, how on earth can I avoid it and remain sane at least until my surgery on Thursday? 

Wish me luck….

Talking gratitude, storms and shhhh!

Do you know this saying? It says - “life isn’t about waiting for the storms to pass, it’s about learning to dance in the rain”. Now I admit to liking the odd quote that can tell a truth in verse or image that opens up a new way of thinking. And in this week, post op, the storms have been raging in this part of the world, both real and metaphorical. So it strikes me that not only have some of these actual storms come with a red warning, I’ve also been reminded that dancing is not my strength either. I’m glad no one reminded me of this quote or my reply might have been brief and to the point ( you know, two words, second one….). 

Ten days post op and I’m healing and some pain receding. At times I’ve been able to marvel at the body’s ability to recover and at other times I’m reminded that our bodies are complex ecosystems and one wrong move and the repercussions are widespread. This weeks smorgasbord of symptoms has included severe nerve pain, bladder infection and the old favourite, constipation. 

Some days I think constipation is the worst thing to cope with. I’ve been toying with the idea of setting up a podcast called “Talking shite”.

In Scotland ( and Ireland too I believe)  it’s a riposte to people we think are talking nonsense, occasionally fond but mostly not! And the word shite is an adjective as well as a verb. Now I don’t suggest you try this out in polite society ( !?) or say-at a job interview but in the right context it can be liberating if rude! And some light hearted banter and information about constipation is so needed. It’s the thing no one wants to talk about and yet can make you quite ill, for some it causes acute illness and should never be ignored. So if you live with chronic pain and need to counteract the effects of opioids on the bowel join me in being open about talking shite and don’t be afraid to ask for help! You aren’t alone…

Meanwhile in other storm news, I’ve to have another scan and likely biopsy on something the CT showed. I’m unsure of details but will find out more this week ahead. I’m taking a step at a time and should get all results early March. And the weather based storms have made it pretty hard to dance or even stand up straight so instead I’m reading, doing a little writing and contemplating trying cross stitch. I suspect the afore mentioned adjective may be employed during that process of learning and experiment but I will try to retain my beginners mind of curiosity, not judgement.

In many ways it’s gratitude I feel this week, in spite of the storms, for the kindness and love of family and friends and the many ways they have reached out. It’s hard to express how much it helps, it really does. 

I feel less alone in this storm and that’s getting me and Andrew through. 

With love and thanks to you all. 

Audrey

The Kingdom of the Sick

 The Kingdom of the Sick

Well it’s official, I have another cancer in my left ( reconstructed breast). I’m still taking exemestane and having regular zometa infusions to help prevent  the return of the cancer but nonetheless I’m back to hospital on Thursday 10 February for a wide local excision. So I left the breast clinic with a pen drawing on my boob of the planned excision and trying to puzzle that this time the tumour is triple negative this time. This means none of the hormone based treatments or herceptin work to treat or prevent the triple negative tumours. It’s complex to understand but for more information see 

https://breastcancernow.org/information-support/facing-breast-cancer/diagnosed-breast-cancer/primary-breast-cancer/triple-negative-breast-cancer

My bone scan was clear which was good news and I get the CT for an all over check up, on Wednesday. It’s the day before the operation but at least there will be some preliminary results. So this week is busy. 

As I was planning how to approach the CT I was interested to see mention of getting to the hospital ( for 8.45- a challenge as a wheelchair user who lives with chronic pain). The MACS committee I’m part of has been actively trying to improve information and options for disabled people getting to hospital. I read on, please drink 1.5 litres of water mixed with an attached drink 60-90 minutes before. OK, set alarm it’s going to be an early one. And just over the page it says the parking is reduced please do take public transport. 

I picture someone, a litre and a half in the tank, chugging slowly across the city on the number 19 bus at the rush hour. I cross my legs tightly and thank goodness I’m close to the hospital. Can you imagine?! It’s not a joined up approach is it and yet all these instructions are in the one letter! This is why travel to healthcare settings is important and yet so often ignored. For many that would be a missed appointment, the final stressor that tips them over the edge between coping and not.

I have been asked constantly in the last few weeks -“how are you?”. I don’t know would be the honest answer. I don’t cry like Cara the lurcher. She had a tooth removed yesterday and she whimpered for several hours and howled like a trapped beast when our daughter asked her how she was. She likes you to get the full force of her pain, grief and disgust at her treatment. In fact we shared so much compassion last night that we all shared the bed too, two adults, a big cat and an upset three legged dog. ( don’t judge!) I think we managed some sleep! It’s rare the cat has been ill or hurt I’m relieved to say, but when he is upset, he goes under the bed, right at the back and stays there till he needs something or feels better. I’m more in tune with the cat. I don’t cry much but  I do tip into sleep and not always when it’s convenient! 

I had a really lovely birthday last week which made me tearful for good reasons. I am literally festooned with flowers. A small selection shown here! And as if that wasn’t enough we went to the Botanic gardens in the afternoon, setting out in winter sun to see the snowdrops. They were glorious and reminder that spring flowers will soon follow. But caught in a snow and hail squall suddenly was the additional reminder that winter was still in charge. 

Davie, our grandson, free of perceptions of seasons, found joy in capturing snow on his tongue. Seeing the world with the beginners or child’s mind is how best to find happiness.

I’m isolating now, pre-op but I do find myself wanting to be in contact with others who are ill. Those who get the negotiations with the future, the anticipatory loss and grief, the uncertainty and feeling unable to plan a trip or a holiday until the treatment plan is clearer. With those others who try to keep their pain from those they love and who want to savour every chance to hug them and hold them close and foolishly try to hold in the tears. There is a comfort and desperation almost in those hugs, can you store up a lifetime of them and wonder if telling them again and again that you love them isn’t almost counter productive. 

And yet in the kingdom of the sick, love is our currency. 

Tae a lump

 

Tae a lump….

I’m not sure when I noticed you. I do remember thinking I will wait until after Christmas to mention it. But you know that feeing when you have a hole in your tooth or even an ulcer on your tongue, you have to constantly revisit it. As you avoid calling the dentist your tongue tells you how foolish that is. Exploring every tender point at every time you are trying to avoid thinking of it, yet the tongue- the traitor-finds it everytime. Making a mockery of denial, so does my hand. In the shower I check it out, in bed I notice it’s contours, applying my favourite moisturiser I feel it clearly. I’m confused and yet at the same time my heart is sinking in recognition that this is serious. 

Of course it is, you cry. But you see I’ve already had breast cancer four times and I have had two mastectomies, one reconstruction and a whole lot of grief since 1994. To be fair most of my diagnoses have been in the last 10 years. Just when I thought I was safe from breast cancer, just when I had moved back to my favourite city, Edinburgh and a couple of years into working as Scottish director of a breast cancer charity which was at that time Breakthrough Breast Cancer ( since merged with two other breast cancer charities to become Breast Cancer Now). Honestly I’d got a bit smug. I was through it and could use my experience to set up the charity in Scotland and make a difference for others. Knickers on top of the tights ( super woman style) Audrey would do her utmost to improve things for people affected by breast cancer. I did the moonwalk, I spoke at events from village halls to parliaments, my passion was there for all to see, I had a super team ( take a bow, you know who you are) and we worked our socks off. I was due at the breast clinic as a new patient then go on to a national meeting of experts on breast cancer. I never made that meeting. The routine mammogram as a new patient showed that I had a recurrence in the breast I had treated in my thirties. I can do this I thought…..and I could but after reconstructive surgery fatigue eroded my well being. Every early fight to London, every late night home or spent in a soulless hotel stole my well-being a little at a time. And -long story short- I decided to leave the job I loved. I described all of this in this blog which you can read from the beginning. 

I had my right breast removed in 2019 after more cancer was found. It was then we realised I carried the BRCA2 gene. So in February 2020 I had my remaining ovary removed and that should mean I was at much lowered risk of recurrence. 2020 would be my year I decided but as we all know now, coronavirus had other plans. I’d developed a fuckit list, to be honest it isn’t a bucket list but more a list for someone who has had to seriously compromise but still wants to make the most of this reduced life. 

So back to January 2022 I told my husband about the lump and he encouraged me to tell the oncologist the next day rather than wait until my annual appointment at the breast clinic the following month. His reaction led to an early appointment with Prof Dixon and he told me he was sure it was another cancer. So today you find me waiting for scans ( bone scan one tomorrow) and biopsy  results ( on Monday). I remain hopeful it’s yet again a localised recurrence and surgery will be the mainstay of treatment. Indeed I’m wondering if I could seek an entry in the Guinness book of records. Not sure that would compensate but it’s something?? 

I know my family and friends have read this blog at times over the years and I will commit to writing more regularly and sharing this next stage. I hope it helps others understand a little more of what this experience is like for me and mine. I’m still in the phoney war stage of this journey. I haven’t started treatment and I’m still working hard to persuade myself that this new diagnosis won’t change things in the long run. But just today I realised something. In the north east of Scotland the word bosey is used to describe a hug into the breast. Now my grandson loves a bosey and today it struck me I really won’t have a bosey to offer anymore- and for the first time this new diagnosis felt real. And my soul is aching. 

In a month when you can be anything-be kind.

 January. In a month when you can be anything, be kind! …please

When I was a wee girl, I’m told I used to cry at the end of the Christmas holidays. Perhaps I didn’t want to return to school? I don’t remember the reason but I do remember that I didn’t want to holidays to end. I wanted the Christmas/midwinter/Hogmanay celebrations to go on. Was it about Christmas? I did regularly go to church and Sunday school, at that time and admit to being captured by the Christmas story. But I was never the one who got to be Mary in the nativity, I was more of a third donkey type! I loved the carols, the special services, the hope and optimism. They settled around might heart like the tinsel on the tree. They lifted the mundanity of winter in our wee village. And Hogmanay whilst whisky fuelled adults were sometimes unpredictable I savoured the fun, the gatherings ( even parties) and the cheer from visitors and family who too were freed from daily grinds. Winter in Scotland was grey, austere, cold but the lights of the festivities were not. The temporary relief saved us all in some ways. 

I didn’t mention presents because we always were treated so well, with parcels, sweets, fruit, dates, new slippers; every Christmas cliche and they had to be practical ( new jumpers)  or good for learning ( board games) or bikes of course. The memorable years were pets like the budgy, called snowy. That year school was a poor second to watching the budgie! Of course I am so old that the TV was pretty poor in those days. But really although I always enjoyed the presents they weren’t the star attraction. 

No it was time with family and our friends that made it special. My father was even off for some of it and so he became part of our lives again - if not for long. Had I been up at that time, I would no doubt have noted the stoop of his shoulders as he headed back for his shift down the pit. The shifts that meant, in the winter, daylight was missing for months from his world. 

Our home, a prefab, a perfect small bungalow ( above with me allowing a rare photo) with a big garden but no insulation. Ice on the inside of the window, the excuse for slowly emerging from heavy and cold almost damp covers. The hot water bottle had been fought over at the beginning of the night and carefully avoided by the morning by which time it was colder than ice. But if you were brave enough to kick it from the bed it’s stone frame caused a small tremor that measured on the Richter scale! 

I shiver as I picture that room shared with my sister. Our circumstances are so dramatically different now thanks to our parents hard lives and work and education made possible by grants and good local schools. But my memories of those festive periods warm my heart like no hot water bottle could. But getting up in winter remains grim, inspite of central heating and good insulation and the love of my family. Therefore next month, when I qualitify for my old age pension

my first goal is never to get up early in the cold, however many winters remain! 

May January be kind to us all and May 2022 bring you all health and happiness! 

Happy new year! Here’s to love, connection and time with those we love.

 2021 we had such hopes for you. But we should have known by then. Covid was a constant backdrop to our lives. Vaccines offered so much hope with good reason and yet freedom did not feel secure. Plans were rarely more than tentative. We delayed bookings and failed to rebook until later in the year. A summer plan became autumn and instead of warmth we had the glory of Scotland’s colours, rust brown and gold trees called out to us. Look we are here they say, and we hold our presence as your calling. 

Scotland you own us with your beauty and your message of ‘you are home’ speaks straight to our souls. These souls starved of touch, of company of comfort and of love. How could we resist your promise of presence, of the comfort of the familiar, of safety we assumed but ultimately who can promise so much in such times of uncertainty. 

As Christmas approached we thought, this year will offer so much. Christmas with family and New Year with friends exploring new territory, new traditions, new plans. But covid had the omicron variant up its sleeve. No smug acceptance of our future after all. Maybe you are milder, I do hope so. But the truth is the management of omicron is less about us as individuals but about the challenge for communities, organisations, the wider public health. The reactions from people range from who cares to recognising that  it’s vital to go upstream and protect the existing community. 

What future do we seek we ask? Is it  everyone for themselves or is it that this is a shared challenge and shared responsibility.to find the end to the challenge of covid. My sense is that this will not end properly until we accept the need to think community rather than self. So my biggest hope for 2022 is happier and healthier communities and individuals. 

So welcome 2022.My hope is that we see more of our loved family and friends, we miss you. And if covid has taught us anything, it’s that what matters most is love, connection and time together. 

Happy new year all. Stay safe and well and make time for those you love. 

See you next year! 

Audrey 

For Rosa

 

For Rosa

Rosa,her smile tells stories

straight to the heart.

She speaks in two languages;

signing illustrating her emotions,

spoken words the context 

for us who are awed by her.

That stride off to nursery

with no hesitation.

She knows none of the 

fear her parents hold.

But for noticing that

they hold her a little too tight.

Omicron-a benign name

Like a young sister of a unicorn maybe?

Magical almost- except-except

The truth is that it’s another viral variant

Spreading its tentacles across

our city, the country, the world a renewed threat

to our lives and our well-being.

For Rosa much of her life so far

has danced between the full colour version

then back to the greyed out 

Lockdown version.

Play boxed away into homes

Fearful of a virus that doesn’t 

only change lives-it threatens to take life.

There’s the fear, not captured in Rosas short memory

but for her Mum and Dad its very real

sitting by her bed.

An orchestra of sounds and light

the hospital machines symphonies

tell of laboured breath

and blue lights.

It’s just an extra chromosome after all?

But every time the virus rises up

So does the fear.

It’s only a mild illness -for you maybe!

Why bother with masks or isolating?

It’s for that smile.

It’s for life in all its colours.

It’s for Rosa.