When “happily ever after” fails and we’ve been poisoned by these fairy tales

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Audio version here: audio

I am usually quite particular about sitting down to write this blog every 3 weeks. The eagle eyed amongst you may realise that it has been 4 weeks since I last wrote. It would seem a bit odd, during lockdown, to claim that I was too busy. Quite honestly, last week was pretty full on, and in the end I allowed myself a week off. I never want to feel like I’m rushing my writing just for the sake of hitting a completely made up in my own head deadline. That would seem to be somewhat contrary to the point.

I have been thinking a lot these last few weeks about uncertainty. It’s a word that seems to have been used frequently, during these “times of uncertainty” in a global pandemic. For control freaks like me, these weird times are testing on so many levels. There are so many questions that we don’t know the answer to. When will I next be able to go to a shop? When can I next go for a glass of wine with a friend? When will I next let somebody through my front door and have a natter over a cup of tea. When can I next go for a weekend away or better yet travel farther away. I am conscious that my world has become relatively small during cancer treatment and for others of course there are bigger and more stressful questions. Work and the financial impact of the crisis. Delays to medical treatment. Schools. Haircuts! Far worse, people we care about becoming ill. Will we get ill? Worrying about the statistics. When will the vaccine be ready? Does an antibody test actually matter? I’m really, really, worried that people are not going to their Doctors if they have concerns that could be symptoms of cancer.

Even now, it feels like we don’t know very much and I don’t blame anybody for that. We are all learning as we go along how to deal with this situation. There is no roadmap to follow.

I worry about how long it will be before I am back in the MRI and we know whether the current treatment is working. If not, will I be back on chemo, before it’s too late? What, ultimately will be the impact of having stage 4 breast cancer during a global pandemic and the resultant lockdown. The only thing I know for sure is I won’t be having my “Party To End All Parties” anytime soon.

I have worked in organisations where learning to deal with and manage in an uncertain environment is part of the status quo. I have, in the past, had to get better at making decisions when not all the information is available. Some people are more comfortable at this than others of course. I’m not naturally a fly by the seat of your pants kind of girl though. I like a plan. I like data. I like analysis and I may have mentioned, I like control. So what happens when all your usual coping mechanisms are removed? How do we make choices and decisions and plan when the parameters are completely unclear. We don’t know what normal looks like anymore and we don’t know what and when things will start to change. I’m afraid to tell you that I don’t have the answers to these questions. There are probably text books written on the subject. For those of us who live the average privileged life, not doing what we want to do when we want to do it, is not something we are remotely used to.

I do think though, that undergoing treatment and living with stage 4 cancer is not a bad training ground for that level of uncertainty. I have spent 3 years now not quite knowing what will happen next and not being able to plan for it. I have learnt to think short term and blinker myself to anything else. I think mostly now about what I am doing in any given week. Sometimes even that seems a bit tricky so I focus on one day at a time. And somehow or other, the world keeps turning.

One decision that I did make a few weeks ago, and on the advice of the cancer centre was to travel to West Wales to isolate with my parents. On the surface it might seem like an obvious choice to move from a very small flat, by myself, to the big blue skies and open spaces of the countryside. Normally, that would be a really easy decision. However, I wanted to wait for the my treatment window to open up sufficiently and for the peak to have passed. I am conscious that some might think I should not have taken the trip, and probably in some ways they are right. I am mindful that there are countless people who would make this choice if they could, we are all, in the end missing our nearest and dearest. I am conscious that a small rural population might not be overly thrilled to have a new member in their quarantine gang. I will simply say, that it was the right decision for me, and my parents, and if you still think I’m a Covidiot, then so be it. I am of course maintaining social distancing and isolation guidelines and have been welcomed so kindly to the community (from an acceptable distance).

Whilst in Wales I have been looking after some late arrival lambs and helping to hand rear a baby robin that was found wondering up the drive. We have also been enj oying some pretty spectacular weather. The blues and greens are just stunning. We celebrated VE 75 with a delightfully distanced street party and I was able to see my Mum on her birthday. These are important memories.

From a treatment perspective, not much has changed. I have moved on to the monthly cycle of hormone injections which means I only have to go to the cancer centre once a month. Hence why I was able to spend some time away from home. Once a month I get my bone strengthening injection, two hormone injections and my blood is checked. This means four needles on treatment day, which is fine, and I am a big, brave girl, but I do feel a bit like a pin cushion that day. I’m not going to pretend it doesn’t sting a bit. I will take it over chemo any day of the week though. So far, the side effects are tolerable. The night sweats are back, which is not conducive to a restful night, but I have just about got used to this after chemical menopausing for 3 years.

My biggest problem at the moment is increased pain. I don’t know if this is because of the tumours in my bones or whether it’s a side effect of the new drugs. It could also be arthritis which is increasingly evident on the MRIs. However, my lower lumbar, pelvic and hip areas are now so sore that they keep me awake. I have been prescribed pain patches which I wear for 12 hours at night. In the past I have always been a really good sleeper, and don’t do well with interrupted sleep, so anything that disrupts my slumber is a big problem. So far, I don’t think the patches are particularly effective and I remain in quite a lot of discomfort. I will continue to push for a solution and hope things improve.

Since the lockdown began I have not been to the hospice, for obvious reasons. Over the last few weeks we have started to do one to one physiotherapy sessions by zoom and we have also started a weekly zoom yoga class. Physiotherapy has been a really critical part of my wellbeing for some time now. We work together to try to build some strength in my body where it is otherwise being weakened. It’s a really fine balance between working to improve matters without me getting it wrong, overdoing it, and making matters even worse. I am so grateful to have the support of the hospice and my physiotherapist is an absolute superstar.

Apart from that, lockdown continues to be pretty uneventful. There are certain highlights that have now become the norm. We started a Friday night virtual quiz night right at the very beginning and this has become our team’s Friday night out/out in/in. Now we seem to have fancy dress every week as well as cocktail of the week. It is quite messy, but I have never had so much hysterical fun sitting on my sofa “alone”. It’s a brilliant way to connect with friends old and new, near and far. The world suddenly becomes a much smaller place with a bit of decent WiFi.

This is my 40th blog. In a month or so I hope to have 20,000 views. At the risk of sounding like a broken record, I am so grateful to have you here with me. Your support means more than you know.

Please stay safe.

Stay sane.

Feel your boobs and bits.

Big Love, AG xx


The end of the innocence : Don Henley & Bruce Hornsby

I ruddy loves this tune! Please listen to it if you don’t know it x

Remember when the days were long
And rolled beneath a deep blue sky
Didn’t have a care in the world
With mommy and daddy standing by
When “happily ever after” fails
And we’ve been poisoned by these fairy tales
The lawyers dwell on small details
Since daddy had to fly
Oh, but I know a place where we can go
Still untouched by man
We’ll sit and watch the clouds roll by
And the tall grass waves in the wind
You can lay your head back on the ground
And let your hair fall all around me
Offer up your best defense
But this is the end
This is the end of the innocence
O’ beautiful, for spacious skies
But now those skies are threatening
They’re beating plowshares into swords
For this tired old man that we elected king
Armchair warriors often fail
And they’ve been poisoned by these fairy tales
The lawyers clean up all details
Since daddy had to lie
Oh, but I know a place where we can go
And wash away this sin
We’ll sit and watch the clouds roll by
The tall grass waves in the wind
Just lay your head back on the ground
And let your hair spill all around me
Offer up your best defense
But this is the end
This is the end of the innocence
Who knows how long this will last
Now we’ve come so far, so fast
But somewhere back there in the dust
That same small town in each of us
I need to remember this
So baby, give me just one kiss
And let me take a long last look
Before we say good bye
Just lay your head back on the ground
And let your hair fall all around me
Offer up your best defense
But this is the end
This is the end of the innocence

One thought on “When “happily ever after” fails and we’ve been poisoned by these fairy tales

  1. Great to have you back in Wales under this lockdown. Nowhere else is better than west Wales if one needs to be in a lockdown. Speak from my heart! LOL

    Like

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