Saturday, 7 December 2019

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. 

Friday, 22 November 2019

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. 

Sunday, 10 November 2019

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.......

Thursday, 10 October 2019

A Poem for Mental Health Day-Gratitude

A Poem for Mental Health Day 


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’ 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. 

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 
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.