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. 

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. 

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. 

Stalked by a killer

I’m being stalked by a killer. The regular attempts to wound me have worked to take away my confidence and my pleasure at so many things. But all along I have kept going. Nil illegitimi desperandum and all that. I’ve put on my make up, done my hair, squared my shoulders and kept going; whatever the cost. I’ve gone to work, I’ve met friends, I’ve covered up my bruises and scars and lived my life. All the time knowing that the killer might return at any point.  Might just show up unexpected and yet familiar. So familiar to be honest that I’ve become desensitised to the risk when the killer reappears. I know how this goes, I’m deeply wounded physically and of course mentally and I eventually recover because this killer is trying hard but it hasn’t managed to kill me yet. And when I say recover I’m not saying I return to how I was before. Oh no. I get my life back in time but each time leaves me scarred and scared. I find my mood flattens and everything gets just a bit greyer and sadder. And then time passes and I start to see a future again. And that it seems is when the killer returns to remind me not to get complacent; to not to take my life for granted. 

So as you’ve probably guessed, this time it was just a few days before Christmas. This was to be the Christmas remembered as being my grandsons first. Full of cute baby photos and smiles of the anticipated future filled by first steps, first words, first stories read. And it was- but this time it was also a shared knowledge that the killler was back. Although I had hidden it in that dark cupboard away from view but if you listened closely you could still hear its presence, waiting to be acknowledged once the tinsel of Christmas was packed away. 

So this week it was confirmed I have breast cancer again. This time in my right breast, it seems not to have spread and is treatable. And the treatment shouldn’t have to involve chemotherapy. All reassuring. Next week I should hear what my options are. 

I met the breast care nurse sitting in my wheelchair as I recover slowly from the not entirely successful removal of the benign growth stuck to my spinal cord. I’m in constant pain and walk only with mobility aids. I said « this is the point where, if I was a Labrador, we would say that’s it they’ve had enough. » She half smiled and said, no we don’t do needles in the paw here. You can do this, you’re a resilient woman. 

I nodded but also I do admit for a moment I was very tempted by the ease of that needle in the paw.

A year of paradox

It’s Christmas Eve

I sit up from bed

I start to walk

I remember

I drag my leg

Painful

Slow

Unsteady 

I start my day

This is the year of paradox

The year that pain decided

my future was risky

That surgery

And it’s long slow recovery

shaped each day

The year that family 

gathered and made

a cocoon of love

The year I was disabled

by the world around me

A city of steps

and buses

beyond my reach 

Of searching

for dropped pavements 

for ramps

for everyday normality

The year our family grew

with a joy-filled arrival

our grandson 

Who knew

how babies transform

who restore

a future

to hold on to

however painfully

Even this year 

holds another chapter

of the unpredictable

that has yet again 

shifted my fragile compass 

But now it’s Christmas

and that chapter waits

while we gather

and savour the life we have

Freedom! Blue badge blues 14

Born to be wild? 

Freedom! 

I spend an inordinately large amount of time trying to work out how to increase my independence. Now it’s personal not national I’m talking about here. ( Although after this week in “Brexshitland” who could blame me...but that’s a whole other blog).

Back to my independence...I have shoe horns and grabbers up and down stairs now. I have walkers upstairs and downstairs too. I have a walking stick up on each level. I have a device to put my socks on even. With a shoe horn I can manage one pair of boots but not the others. I’m currently researching more ankle boots I might try and negotiating with Santa given the expense!

I have my much loved mobility scooter which if set up for me, gives me an exhilarating freedom to travel around this part of Edinburgh. I can reach my new Open Book group in the Botanics on my own which has been a much valued addition to my life. My current challenge as winter arrives is however is keeping warm. I may need to purchase some duvet type cover for my legs but in doing so I may reduce my freedom as it will then become another obstacle to negotiate. Can you see the challenge? Everything is complex in my new life ( please don’t call it my new normal...it brings out a dark side in me). And it takes time. My concept of time just now is blown. “I won’t be long” is my most commonly used big fat lie...

My other dilemma is finding a car I can drive with aids to enable me to travel on my own. Help!That feels like an enormous task just now. I can’t walk without a walker to the car and can’t lift it in or out. I then need to be able to drive which is going to need to be an automatic car. Currently I have a manual car and a right leg I can’t trust. And it’s painful to get in and out. I then need to be able to assess how far I need to walk when I arrive-always assuming I can park, even with my blue badge. That’s gone badly a few times. My recent experience was taking a  taxi and my walker to the venue then borrowing a wheelchair to get me to the meeting room. So far so good. Then there was a fire alarm. Fortunately they had kept the borrowed wheelchair by the door and I was able to get out with support. My realisation is that I need a wheelchair as well as my scooter, which isn’t very transportable, or I’m not safe. So I’ve been referred for a manual one meantime. I’m looking into the motability scheme and hoping it helps me move forward re having a car I may be able to drive in time. A red one would be my preference. ( that was a joke by the way....sort of). 

Sometimes it’s easier to just stay at home and that accept the freedom I mentioned feels a long way off....for now I hope. 

The watcher from the chair Blue badge blues 13

I yearn to stand

and coorie him

kiss his milk full cheek

smell his untarnished skin

feel when I held his father too

I yearn to stand

and comfort him to sleep

and sing the songs that

Grannies have aye sung

the stories of our past

Yet gratitude fills my heart

when we celebrate

our precious boy

and experience the joy

he brings us all

And in a deep corner

of my heart I’m sad

that I need to sit

the watcher from the chair

trying to hide her grief