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