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. 

Sunday, 6 January 2019

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.

Monday, 24 December 2018

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





Sunday, 18 November 2018

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. 

Saturday, 3 November 2018

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

Wednesday, 17 October 2018

It’s me or the cat; Blue badge blues 12

Made to measure for Koshka 

So Koshka had the walk of shame at the vet ( again) and he’s back on a diet. Help!" You know how it goes; he eats cos he's fat. he's fat cos he eats..."
Our day starts around 4am when Cara the dog decides she needs to go out ( and then follow us up to bed!) Cue Koshka to pronounce his hunger and so it starts....
Feed me!

My friend was staying to support me recently and as she said when she too was caught; " he got me when I was vulnerable in the middle of the night!" By morning I don’t even remember what I gave him. When our feet touch the ground in the morning he springs to his bowl from anywhere and we eak out the first of the two pouches he’s allowed. I’m so relieved when it’s lunch time and I can give him some dried biscuits ( measured out carefully now). 
A previous vet said if he goes out there is no point restricting his food as he will find it elsewhere. He’s out just now, maybe I should warn the mice and the birds with a sign saying "BEWARE of the CAT, he’s on a DIET! "
Another friend recommended trying raw food so I’ve ordered some. Christmas may have to be cancelled. My recently rewarded person independence payment may need to go on cat food to stop me being eaten in my sleep. 
And talking of sleep, he’s currently not coming with me to bed. I’m having a withdrawal of love strategy applied to me. And as you know I’m vulnerable to that just now. His purring presence beside me when I came home from hospital was so soothing. 
Last year I was involved with asking people with neurological conditions what most helped them and I was struck by how many answered my cat or my dog. We can assume that our roles as caring professionals are the key to wellbeing but so often it’s the unconditional love of a furry friend that makes the difference. If only the cat could make me a coffee and serve me cheese and my life would be sorted and it would take a huge amount of pressure off my husband! 
Of course for me Koshka’s love is completely conditional. On food. My tension builds as the day goes on, can we survive on the recommended rations? One purr-fuelled head butt and I give in. Then the guilt sets in-for me that is-he’s without guilt.

Just as well he’s so very handsome. 


Thank goodness the dog is thin! 

Sunday, 23 September 2018

To see ourselves as ithers see us: Blue badge Blues 11


This week we have been watching The Crown...Yes I know!  I’m no royalist and probably a republican at heart but we had a few recommendations of it as interesting drama. It’s only one perspective of course and they skip over theories that the abdicating king was also a risk because of his fascist friends for example- but its interesting. The last one I watched was when Winston Churchill retired and he saw his portrait that had been commissioned. An honest portrayal of his frailty was too much for him.
In that moment I saw myself as well. A mirror of my own shock at my frailty. I seem to possess an ability to lock some of that reaction in a cupboard, only to be taken out on safe occasions. I keep going, taking comfort in minor achievements. I love getting out in my mobility scooter, even when I get wet! I smile at everyone who catches my eye and get warm responses. It’s a joy. I have created a safe environment at home where I’m resonably ok, apart from trying to do things in the kitchen! 
But when I’m out I’m reminded of my vulnerability. I remember that not so long ago I could walk the dog with pleasure and no pain. I see this shock in friends and family reactions to me. 
I too feel that shock. How did this happen? I know cognitively why it happened but my body remains traumatised. The physio reminded me that I’m still in the acute stage of recovery and I was relieved to hear this as it does feel like that. 
I’m holding trauma both psychologically  and physically. I recognise that my blog has become my way of processing all that’s happened at a thinking level. But the feeling level also needs cared for. I’ve found mindfulness so helpful but if I’m in pain or I’m getting the nerve recovery jumpiness I can find it really difficult. So I have to choose my moment. It’s not easy but I when I can it’s so powerful. For years I thought trauma could be solved by talking it through but now I know that’s not enough. I’m still reading “The body keeps the score” by the psychiatrist Bessel Van der Kolk.Its really helping me understand this process I’m going through and I do recommend it.
Perhaps the greatest experience of healing just now is holding my Grandson in my arms. We are all feeling blessed. My family and friends are the reason I’m getting better. 
I’m also slowly re-engaging with work, including writing, facilitating, coaching, mindfulness. I’m especially looking forward to the retreat I am co-facilitating next month. I’m setting up my office at home to see leadership coaching clients here as well as on skype (or similar). But I’m also considering using my extensive professional, coaching and lived experience to enable others on a one-to-one basis to adjust to the impact of serious illness. It’s a way to make sense of all of this and for me to use all my experience in my offer into the world. 
I would really value your thoughts- I’m on twitter @audrey.birt.

I’m slowly integrating my former self and my new self, trying to accept the changes and find the energy to continue to improve. Jings it’s hard work!