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.......