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 allow such a cancer to spread, meaning amputating the leg was no longer an option. We questioned, wept, discussed and processed such a devastating thing for our beautiful long legged lurcher to cope with. The vet listened and answered clearly and kindly. The decision was made and Cara had her back leg removed on Christmas Eve. She didn’t know the timing but we did.

So our wonderful children held us close and we cooried in for a family Christmas. Every wow from Davie with each parcel pulled open was a balm to our aching hearts. We played games, we laughed, we cooked then ate like kings, we opened new books, we read stories, we walked and talked. I will remember it as a very precious time.

the eyes have it 

Cara has been home for three days now and is improving. She’s managing to walk on her three legs cautiously. We’ve coaxed her appetite with salmon and rice. Her last meal was so tasty, the cat tried to share it with her! I’ve shared with her the new white fleece I bought and it’s very well received. It’s softness even got our neutered male cat very excited! She’s sleepy and healing and unlike us she’s not anxious about the cytology results. She is in each moment; sometimes snoozing, sometimes excited to see our daughter or son, sometimes licking her lips, sometimes whimpery and sore. But she doesn’t worry about the future, she will learn to walk comfortably and hopefully run again and won’t lament those lost days of four legs. 

So much of my pain lies in remembering what I can’t do and chewing over worries for the future that may or may not happen. I know from my mindfulness practice that staying in the moment is the best way to get through but times like these can impact on the very practice that would help.

But I also know that like me she will adapt and have fun again. We’ve shed so many tears for her, much more than I’ve ever wept for myself. Don’t ask me to explain that...?

Our Grandson like Cara is in each moment, enjoying the new toys, the different food, Christmas cracker hats torn apart, pulling open parcels with no heed of contents, no judgement, just pleasure all wrapped in a loving family. I heard a discussion about what people remembered most from Christmases in the past. And the norm was never about gifts but about time with family and friends, about games shared, about inappropriate Nana moments ( or maybe that’s just my Mum?!) about sledging when the rare white christmas happened. It was time together and connection, shared memories, rarely about a gift. 

The gift is our time invested in family and friends and for us, it’s our much loved pets too. So it really has been a special time with the whole range of quite raw emotions. It seems in 2020 we face uncertainty but in truth we all do. 

Wishing you and yours health and happiness in 2020.

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! 

But Christmas awaits and I’m very much looking forward to it. I’ve a cast iron excuse not to cook so setting the table is my job! Our Grandson will be with us so I’m looking forward to a riot of fun. Especially as our dog will have the cone of shame on, having had a growth removed from her leg. 

Davie finds Cara the dog hilarious so I expect the cone will add to the giggles.Woof and wow are his favourite words so there should be plenty of opportunities to use them! I’m hugely grateful to have the famille together. We’ve already had lots of family visiting and much love and laughter. That’s the gift of Christmas for me.

And it’s been a hard week or so since the election. The new government have already dropped promises like a higher living wage. What more might they be capable of? They scare me as their leader ( our PM-FFS, how did that happen?) seems to be without a moral compass and shows no sign of compassion for others. We’ve five years of this at least unless Scotland gets the chance to choose a different path. I will do what I can to shape a different way; not least as co-chair for Voices for Scotland. Voices for Scotland is a new non-party, civic organisation campaigning for Scottish independence. The aim is to facilitate open conversations, away from the division and polarities of yes,no, leave and remain. The conversations will be about Scotland’s future with those people across the political spectrum. We want to hear from people from all walks of life and really listen to their stories and hopes. People need hope that things can be better for everyone not just the elite who now control our country. I’m all about finding hope in dark times. 

If you want to get involved check out the website or just let me know. 

Here’s to better futures, wishing you a happy Christmas from Edinburgh and may 2020 bring you love and connection. 

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 drank tea and waited. After sometime a man answered. I told him,voice shaking, and emotions spilling over, I explained about the letter but that I had sent it in within the deadline. ‘I know what’s happened’ he explained. ‘Our mail is 2-3 weeks behind opening and registering on the system. So don’t won’t worry this is a standard letter that goes out and we have no control over that. Really? Really? ‘So just ignore the letter, i can see your form is with the case manager and once it’s been assessed you will hear from them.’ ‘So this is your fault but I get this letter which caused me so much distress?’ We went round that loop a few times till I was reassured then I hung up and tried to calm down. And I thought that was it until I heard about the assessment. But no on Monday I got a call from PiP as apparently I had requested a call back, I hadn’t but I’m glad I got one as it seemed that although I had done NOTHING WRONG my money had been stopped until the assessment was done. That might take eight weeks. Because the letter was sent this was the process. I reinforced I wasn’t at fault ad nauseum and finally I asked to speak case manager. Again I waited and finally she returned and said they had reinstated my money and my case would be reviewed as normal. 

I have shown the letter to family and friends who share my shock at the brutality of it. One friend, seriously suggested it should have Samaritans phone number on it. Thats the impact, it’s designed to put people off from the start. A guilty of fraud until proven innocent. It’s shameful, this is supposed to be our welfare state, the safety net when times get tough.

And for people who don’t know my story, I have a benign growth on my spine that means I can only walk with assistance for a few steps, I have constant pain day and night, I need support with most things AND I have recently had treatment for the fourth time, with breast cancer. I’m awaiting preventive surgery next week to add to the mix. I’ve gradually had to give up full time work and recently had to dramatically reduce the work I can do. I continue to do work I love, partcularly coaching as it reminds me of who I am and the difference I can make. The PiP in many ways enables me to do that and pays for the many extra costs that disability creates. 

I’m sharing this now, not for your sympathy but because we are in the last week of an election campaign and I hope that if you are unsure what to vote, this will help to persuade you to give your vote to someone who has pledged to create a more equal and supportive society, someone you can trust with our NHS, our pensions, our welfare state. The post war Britain that prioritised caring for its citizens is on its knees and it’s people like me who are paying the price. If you think getting Brexit done is more important than creating a society that lifts its people up, rather than pushing them under then maybe you’ve stopped reading already, but if not please re think. If you want a society where all citizens thrive and contribute then choose wisely who to vote for. This is a pivotal time in our country, each of our votes can change the future. 

Because what has happened to me, could happen to anyone and you too could feel the cold fear of abandonment from a welfare system that’s in the fifth richest country in the world. 

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 for the political discussion. We cried on the phone together when John Smith died. It took decades to stop the habit of calling my Dad to discuss the latest political twist and turn. I can picture his disgust at our current situation in Westminster. I’ve long since decided he would have turned to voting for Scottish Independence as I have but I can really only guess at that. His was the generation that fought together across Europe, who also fought for a better and fairer world in the elections afterwards too. It was his generation who voted for a better welfare state and a national health service. He would not have sat quietly and seen it all undone. 

But I digress, I was musing over photos. As the collector of memories, I’m usually the unseen presence behind the lense. So when I had a professional photo taken for a newspaper recently, I was very uncomfortable. But then he shared them with me and I was taken by the truth he had captured. 

In them I saw the effect of medication for cancer, I saw the recent years of pain and sleeplessness. I saw the toll taken by chronic illness but I also saw a fierce connection to life; the part of me that’s grateful for all those years and stubbornly determined to keep going. I saw how really exhausting that is too. 

Rather than wish he had touched them up a bit ( well ok, maybe a little bit of me did), I was thankful for my truth to be seen without pretence or flattery. Their beauty is their honesty. And that’s ok. 

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 fluffy. But there is now a serious risk that it disenfranchises many of the women it seeks to help. There is a pressure to cover up your scars and put on the pretty scarf, the make up, the smile and pretend that all is well. 

From the experience of four diagnoses I admit that the time when everyone else is thinking, that’s it over now, is probably the very time I’m at my lowest. Initially for me it’s just getting through each stage, the adrenaline keeps the momentum and then thump- it stops. And for me then the black dog drops by and stays for a while. I wonder now if it’s all part of the way it is, a crucial part of acceptance and moving on. Maybe I should accept the black dogs head in my lap, rather than try to  chase it away. I’m sure it’s one of the reasons I struggle so with the pink hue because that black dog has settled alongside me and tucked right in too often over the years.

It’s little wonder when each day brings fresh mobility challenges and pain too. If I had wanted to launch a campaign this week it would be for doors that opened for people in wheelchairs. I did eight interviews for BBC radio this week on the pink ribbon controversy and when I had break I asked about an accessible toilet. The kind woman at reception came with me, somewhat apologetically. ‘I wouldn’t normally do this but the toilet door is so heavy to get in and out’. We arranged for her to come back for me but I was ready to leave earlier so I tried to get out on my own. Look I’m a newbie to the wheelchair user world so if there are any tips please pass them on! I was firmly stuck behind that door. So like a child waiting for her Mum to return, I sat not very patiently! 

And that’s not the first time. I was recently at a conference on accessibility, learning with great enjoyment about the opportunity that robotics can offer to improve accessibility. With excitement about the future I went off in my mobility scooter to the toilet. Again the doors defeated me and I had to ask for help. I’m not alone in this, where are our priorities in buildings when we don’t consider the frail or disabled when we design the simplest of things-a door?

 A friend sent me this cartoon this week and it says it all. 

I know I’m resilient and stubborn and I have so many good things in my life, but I recognise that the dual impact of spinal damage and breast cancer is my biggest challenge so far. So my plea from this week is let’s not pink wash breast cancer and allow people to express the reality of the impact of a diagnosis and let’s not claim accessibility when so many people can’t access a toilet independently.

And now I need i lie down.......

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..

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 

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.......

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. 

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

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.

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/

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