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 ......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. 

Sunday, 21 July 2019

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




Saturday, 13 July 2019

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.



Friday, 12 July 2019

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/

Saturday, 15 June 2019

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?



Tuesday, 28 May 2019

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

Saturday, 25 May 2019

Reflections from a hospital bed





My Prime Minister has gone
with a catch in her throat
tears for a legacy that was a fantasy
tears for a career that exposed
her as a leader who didn’t lead.

But no tears for the food banks
so needed in our communities.
No tears for Grenfell and communities like them.
No tears for Windrush generation and their families.
No tears for the racism and inequality so many suffer.

And who will choose the next one?
Not the country, nor the Parliament.
The final choice is the Conservative party members
And really the Daily Mail  who tell us it’s Boris,
And so probably they will make it so.

But here from my window
On my hospital bed I see the stunning outline
Of my capital city, Edinburgh.
And I grieve deeply for Britain.
But we need our different choices to be honoured!

Mrs May said now is not the time.
Maybe she was right then?
But in this time when our votes
are ignored and our voices unheard.
Scotland- this is the time! 



Wednesday, 15 May 2019

Mastectomy blues and PTSD

So tomorrow was to be my day for surgery but now it’s delayed until Tuesday next week. It’s not long I know but I’d had so many conversations and hugs wishing me well, I had packed my bag, I had packed my Wonder Woman pants
for safe measure, I had hugged my grandson especially close. And now I have days free I didn’t expect; a sort of stay of execution and I’m feeling rather lost if I’m honest. Even the fact I’m home for thé Eurovision song contest isnt enough to ease the situation. Part of me wants to sleep until next Tuesday. It’s the impact of this surgery I’m dreading so I’ve another few days with two boobs. I will be able to hold my grandson for a little longer, until surgery makes it too painful for a while.

 Strange how the worries shift as I age. I would have been devastated to need a mastectomy in my thirties ( and my greatest fear was not to be there for my children) when I was first diagnosed and I do still feel a large element of that loss. But now it’s less about body image and fear of dying and more about how I can be the best Wife, Mum and Grandparent in this time I have, as well as Sister, Aunt, and friend . A bit cheesy maybe but honestly it’s all about time with those you love and I’m blessed by good people who have helped me put one foot in front of the other this last year.
 I said towards the end of last year that I thought I had post traumatic stress disorder. I recognised the signs https://www.nhs.uk/conditions/post-traumatic-stress-disorder-ptsd/treatment/ , mostly feeling sick and trembling if I thought of my time in intensive care.https://www.health.org.uk/improvement-projects/inspire-–-intensive-care-syndrome-promoting-independence-and-return-toArticle on support after intensive care . Mostly I’ve locked it away and hidden the key but I know it’s there. I’m noticing the signs again in myself as I prepare for surgery next week. Practicing mindfulness regularly is helping but I suspect it’s not enough. Talking therapies feel almost too exhausting just now. Distraction is great for the pain i hold; be it physical or emotional but I also need to rest and sit with how I am. 
Writing is helpful and since I was a wee girl and went each week to the library with my Mum, I’ve always wanted to write a book. I absorbed the whole children’s section and took my love of libraries and books into adulthood. So far as well as writing my blog, I’ve a draft memoir half done, I’ve an idea for a children’s book and another on wellbeing with long term illness. Maybe one of these days I will find the energy to complete them? But meantime I’ve got writing this blog, so thanks for reading and being on the journey with me. I will keep you posted. 


https://www.health.org.uk/improvement-projects/inspire-–-intensive-care-syndrome-promoting-independence-and-return-to

Sunday, 5 May 2019

If ever there was

Inspired by the What matters to you retreat in 
Old Lathrisk, Freuchie April 2019 

If ever there was a place to 
have a retreat it would be here
Old Lathrisk in spring

There’s a calmness even in the birds
Mostly they sing
Or chat amicably
Just occasionally there
Is the p’wee of the buzzard
An unforgiving warning
disguised as innocent cries 

And the writers
hardly making a ripple in the peace
We capture a small part in
a season reflecting ourselves
And once we leave 
Perhaps leaving a whisper of our conversations
But then the waves of this old house
cover our paths as if we were never here

Ah yes if ever there was a place 

to have a retreat it was here.




Wednesday, 17 April 2019

Walking the dog





At least you don’t have to walk the dog she said

I’d love to walk the dog
To see her run in circles of joy
Leaving her signature in the sand
I’d love to walk beside her 
splashing in the shallows,
chasing the seagulls and crows
who dance away- momentarily
only to return , laughing.
I’d love to throw her ball
Again and again
I’d love to walk the dog 

Sunday, 24 March 2019

And breathe

Our retreat venue April 29-May 3


After my last diagnosis of breast cancer I noticed a pull to pay special attention to my body’s  reaction. Any surgery and diagnosis of major illness is a trauma which we hold in our bodies and perhaps not one we recognise enough. 
I was told a few weeks off normal activity and I would recover. I ached to take some time to just be still. I joined a mindfulness course (With Youth Mindfulness) which had four retreats in the year. I had applied before I was even aware of what I’d done. During the year I certainly deepened  my mindfulness practice and I learned how to deliver the training but mostly I recognised an almost primal need to pay attention to not just my mind-but also my body.
That experience drew me to approach my creative writing tutor Helen Boden ( i go to her class in which we write about art around galleries in Edinburgh) with the suggestion we jointly facilitate a retreat with creative writing, mindfulness and coaching. We’ve built up from one day to a weekend and this year at the end of April we offer a Monday to Friday opportunity to restore, reflect and review in the most beautiful of settings near Falkland in Fife. Jo has established a beautiful and mindful  home which we join for the week. We eat lovely food, walk ( if you can) mindfully in the glorious area, we write, we challenge ourselves to find our own path and we restore and recalibrate self care. If you want to join us; here is the link. We keep it a small group and there is excellent  accommodation in Jo’s house as well as space for local people to come each day. I’m so very much looking forward to it. 
I’ve recently read « The Body keeps the Score » which makes a compelling case for not only talking therapies after trauma but also helping to release trauma from our bodies. That’s not only important in relation to adverse childhood events but also those living with and through the trauma of serious illness or adult traumatic events. I recognise my healing from surgery is mind and body and I’m now f that retreats are a very good way to meet that need. My recent retreat in Cumbria (with the Sacred Space Foundation)  helped me leave behind a fog or exhaustion and helped face the next few months with my head up. Healing is so much more than medicine. It’s time to waken to that ourselves. In Mary Oliver’s words in her poem: 

Wild Geese
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.

Our busy lives can serve to us ignoring our needs. My learning in my long and ongoing journey with pain and treatment for cancer is to improve, we need to give space and time to enable healing to happen. Medicine is not enough to do this. We need to create our own way of healing and it takes time and focus and self care daily. It’s taken me a while to understand this and in many ways I’m learning every day but I’m so grateful to know this now.

Wishing you to the opportunity and space to heal if you need to....and let’s be honest that would be most if us in some way. 

Sunday, 10 March 2019

But it doesn’t match!

Remembering my Mum. 






I have a thing about things matching. I blame my mother of course. Throughout her life, until the end-two years ago this week- she liked to look nice. In our last photos of her she is wearing a beautiful cashmere cardigan in a variety of pastel colours that we had given her the previous Mother’s Day. In spite of   the evident fragility you see the beautiful woman holding on to the sense of herself she had managed to retain. 
So even as a slightly scruffy student, when my most treasured fashion item was my afghan coat I needed to ensure I accessorised in an ordered way. My mother never approved of it. Perhaps the smell it emitted didn’t help. It finally left home to make room for a tidier more practical replacement and order was restored. 

So I’ve been indulging in some retail therapy, in anticipation of my surgery in May. Given the gene mutation I carry I’m to have a mastectomy to reduce the risk of recurrence. But I’m not strong enough to have reconstructive surgery. So I will have one reconstructed breast and that’s it. I won’t match. I find myself searching for nightwear that will be comfortable post op and look less imbalanced. It’s a tough call I admit. And although I’m a strong believer in every crisis is an opportunity to shop, I strangely find myself at a loss. I know I will get a prosthesis and the scar will heal. But what happens when it’s just me and the mirror? And the reality of a body that is testing my OCD-ness beyond my edge. My current longer term plan is to have a tattoo. In my reflective mood I think I might have something like a wild rose working its way from my missing breast over my shoulder. But some days I just want to write F*** off Cancer.....sorry Mum!

Tuesday, 5 March 2019

At least.....

« At least you don’t have to walk the dog »she said 

I’d love to walk the dog
To see her run in circles of joy
Leaving her signature in the sand
I’d love to walk beside her 
splashing in the shallows,
chasing the seagulls and crows
who dance away- momentarily
only to return , laughing.
I’d love to throw her ball
Again and again

I’d love to walk the dog 


Friday, 15 February 2019

An unhealthy denial: Brexit vs Cancer

There is something quite synchronistic about going through this uncertain, painful and frankly scary time in my personal life at the same time as Brexit approaches. The runaway trains on similar tracks creating a shared sense of defencelessness. 
As I explain my health situation to people I see the shock on their faces. I notice that mostly they can’t even reach for an « at least... » ( I’m grateful for that ).  Usually they are lost for words. And so am I. I have no convenient words to soften the impact; no cheery words to minimise it.
And then there’s Brexit. I vary between avoiding all mention of it and watching the news from behind the sofa-a strategy last used when I watched Dr Who as a child-, to avidly watching votes and amendments in Westminster holding my breath. Neither approach feels wise or healthy. 
I recognise a similar paradox in how I handle each situation. With Brexit I try on the one hand to ignore it and recognise I can’t change anything. But another part of me, the campaigner, wants to lead the march to London to say this just isn’t good enough. 

A sort of Edinburgh-Jarrow-London March including all of us remainers who feel unheard and equally those leave voters who want to be heard too. It was a cry of rage from the north of England. I’m sure they weren’t voting to be ignored, poorer or have reduced human rights. Our democratic deficit is a chasm and it’s just NOT good enough. We all deserve better than political parties paralysed by their own self-interest. There’s also a stark denial of the seriousness of this situation. 
And then there is my own situation where I want at times to just stay still and be mindful and even netflixful! And knit-badly- too. 
But then I engage with the outside world for fun and even for work and I feel lighter. I’m no longer simply a sick person, I’m engaged and stimulated and enjoying life. My constant challenge is to get that balance right for me. I’m also guilty of practicing denial of my changed circumstance and the seriousness of my own situation. 
BUT if someone else is organising the March, let me know. I will be there on my mobility scooter driven by a combination of a need to be heard and a renewing passion for life, in whatever form it takes. 


Saturday, 26 January 2019

In the genes?


 Cara catching the mood


I kept thinking, there’s a great pun in the whole genes/jeans thing but could I find it? I’m trying to find the light side of this. Like does my bum look big in these genes or similar, you know. ( surely the answer would be yes just now so I won’t go there!). Frankly I’m avoiding jeans right now because they trigger nerve pain. Apparently my brain is confused by my recovering ( hopefully) nerves and it’s not just going you are too old for jeans now, it’s more ahhhh thats sore, stop it. 
Usually discussions on genes in this house centre on whose eyes our Grandson has ( his Dad’s definitely) and his dimples are his Mum’s. But this year genes took on another meaning. After my recent cancer diagnosis I was tested for the BRCA genes.The BRCA gene test is a blood test that uses DNA analysis to identify harmful changes (mutations) in either one of the two breast cancer susceptibility genes — BRCA1 and BRCA2. My family history is in no way typical of the normal pattern but hey who wants to be typical. Because I found out this week that I have the BRCA2 gene. 
Another wave came over my head and this time I struggled to get my head up. I’ve been exhausted and overwhelmed. I really didn’t know if I or the family could face any more. So we booked a holiday! 
At one level it makes sense of recent years; this gene is the gift that keeps giving. At another level it means more surgery in the future to remove ovaries and fallopian tubes and may affect my recently agreed treatment plan. But much worse than that is the impact on my children and wider family. My children are kind and wise people and they proved that this week yet again. They each have a 50% chance of having the gene and have now been offered genetic screening themselves. That is the part that grieves me so very deeply. Since my first diagnosis of breast cancer I have struggled with wanting to protect my children, when that wasn’t in my gift. I’ve had to remind myself of that again this week. Believe me that’s been the hardest thing of all. 
It was fortuitous that I went to see Les Misérables this week. The second act was a cathartic release for me, I think I probably cried the whole way through. Come the song « Bring him home » I was lost. 

And now I’m mindfully knitting a baby blanket and staying in the moment and that’s enough for now. 

Saturday, 19 January 2019

I blame the medication

Waiting for spring


So last week I started another medication. I am the personal cause of the medicine shortage, never mind Brexit. My cancer treatment has begun. I’ve to take this treatment to shrink the tumour so that the surgery can be minimalised and safer for me. Hormone treatments like tamoxifen or aromatise inhibitors are now seen as effective for oestrogen sensitive tumours as several months of chemotherapy and I’m grateful for that. My fragile state could be tipped over by a toxic chemo combination. 
I’ve been on these drugs before and stopped them because of side effects but that’s not an option this time i know. 
I’m now on exemestane which has the best side effect profile of all. With this drug the common side effects are « only »: aching or pain in joints and/or muscles, menopausal symptomes, low mood/depression, difficulty sleeping, fatigue and osteoporosis. There is a list of less common ones but I can’t even face writing them down. I wrote about tamoxifen before and it’s my most read blog so I know I’m not alone in my battle with these drugs. I’m not sharing this to seek sympathy, although if I dose off when I’m speaking to you I will seek understanding! I’m sharing it to remind myself that this particular journey won’t be easy and I need to allow for that. 
And it’s also to help you understand how it is for so many women on these treatments. These effects are life changing for many and yet they’re expected to wear a pink ribbon and smile or even run or walk marathons-wearing pink of course. We must all wear a brave breast cancer survivor uniform, get back to work, bring up our families, care for our vulnerable and workout of course. I might just design a T-shirt with « this is shit » on it, in pink of course. I suspect it would be popular. 
Of course I’m also trying to get more mobile and I managed this week to get to the pool. After 4 sessions at hydrotherapy I’m feeling stronger than I was. At least that’s progress. 
But I’m on two medications that can cause weight gain now and, yes, my time at the pool is a personal marathon but it’s not going to counteract my cheese habit. So I’m currently on the search for a diet that includes blue cheese, Christmas cake and a nice dry Sauvignon blanc. If I find it I I will let you know.I take it as a personal outrage that even with a fourth diagnosis of cancer I’m not thin. Or even thinner- I would settle for that. But I’m using it as an excuse to shop which I blame the medication for too.

Welcome to my life. Time for a lie down.