far beyond the chaos there’s a calm, steady, steady, heartbeat

Hello and welcome to this, my 20th blog. I started writing a blog back in April last year just as a quick way for me to update a few people. I didn’t want to fill up my Facebook feed with tiresome cancery junk too often, so I found myself a space that I could think, process, reflect, regroup and write things that mostly I don’t really want to say out loud. I have discovered a love of writing. This gives me therapy. Whilst I receive some really kind feedback about these ramblings, it’s actually just really important to me. Just me. I love that people are so generous with their comments, but ultimately I wouldn’t really care if nobody read it. As it happens, a week or so ago the blog stats reported that I had reached over 5,000 views. And that makes me very happy indeed. Thank you for being here.

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I sit down to write today on International Women’s Day. Some days it feels like we girls are winning and there may not be a need for a special day that celebrates this half of the population. Other days it seems there is still such a long way to go. With that in mind, and if nothing else, what a great opportunity to celebrate all the women in my life past and current. I have simply the best gal pals a girl could ask for. Very simply, I would not be getting through this without them. I am blessed to come from a line of really strong women and I hope I am doing them justice. I learnt only last week that my Goswell Gran gave up her own home during the war to move her little baby boy (my Dad) and her slightly older daughter (my Aunt) in to a shared accommodation, the other side of town, so that some refugees could live in her house. A few other facts on Gran: She was a brilliant artist. She wanted to train as a woodturner, but she wasn’t allowed on the course because she was a woman. She was a great pianist and organ player. She once told me “Abigail, the key to a successful outfit is the right shoes.” And my God was she right. My favourite fact though, and what a forward thinking feminist she was, given this was the 1960s: she wouldn’t let my Dad leave home until he had learnt how to iron a shirt and cook a meal. Between her, my Grandma South, my Mum and my sister I have spent 45 years being shown what a courageous, independent, kind and smart woman looks like. For that, I am very lucky.

From a treatment perspective, this has been quite a busy few weeks. Towards the end of the second chemo cycle I started getting quite serious inflammation and pain in my hands and feet. This is a known side effect of the drug I am taking. You can read more about it here Palmer Plantar. I recommend you don’t google image that, unless you want to lose your lunch. The skin on my hands was starting to split and it was starting to hurt to walk. The Prof is very keen for me to maintain a reasonable quality of life and continue to be active. So not being able to walk was not in the plan. There was some concern at the cancer centre that I should not have had such a severe reaction so soon. As a result my chemo dose has been dropped and I now have another medicine to take to counteract the soreness. We are learning that my body, despite the appearance of a large ox, is overly sensitive to drugs and my side effects are generally at the upper end of, or off, the scale. It was a similar issue on my last regime when I couldn’t get the white cells off the floor.

As I started the third, lower dose, cycle the hands and feet started to improve. The next day I started to notice a strange tingling pain on the skin by my left elbow. Being the paranoid cancer patient that I am, as I watched a red glow appear across my arm, I had a full on panic attack that the cancer had spread to my skin. Because skin spread is a very real option. To cut a long story and a few sleepless nights short, I’ve got shingles. Don’t google image that either. Shingles is the chicken pox virus. It has lived (like most people) in my body since I had chicken pox, for about 40 years, quietly letting me go about my business. Then last week, as a result of the chemo shitstorm and lowered immunity, the virus decided it would be a good week to wake up. I have blistered skin patches up my arm and on my shoulder. It is quite frankly, disgusting. And it really, really hurts. Quite apart from that I am not meant to go near anybody with lowered immunity. Given that I can’t avoid myself, it means I have to stay in. Can’t go to the hospice for treatment or yoga for fear of putting other people at risk. Can’t go to the gym. etc etc. So I have been feeling a little sorry for myself, which is not something that happens very often. But seriously…. shingles?! Quite possibly the last thing I need. Shingles with hot flushes is just a new level of hideous.

Following a trip to the GP, I have been given some more medicine. As my daily tablet intake hit the high teens this week, it seems a good time to give some details. This is quite dull but I do get asked this a lot:

Domperidone Anti nausea 1
Pyridoxine Helps sore hands/feet 3
Calcium Supplement for bone tumours 1
Omeprazole For chemo tummy 1
Capecitabine Chemotherapy 6
Aciclovir Anti viral for shingles 5
Loratiadine Anti histamine 1

That’s before any painkillers, which I try to keep as low as possible but is high this week due to shingles.

I do not wish to mention the “B” word, however, we all really need to hope that drug shortages don’t become a reality. Moving on…

The day the shingles hit peak pain and discomfort coincided with the day I was due back at Mount Vernon for the first full body MRI since the switch to chemotherapy. Scanxiety was in full force this week. I had a lot of questions, but it all boils down to one thing; are the tumours responding to the chemo? It was a long 2 days before I sat in the carpark, avoiding other patients, at the cancer centre waiting to be summoned by The Prof. By and large the response is good and there is no significant deterioration. To quote the MRI report “Overall the metastatic disease involving the marrow and liver appear stable”. Stable is a really good word when it comes to Stage 4 cancer, and so this is really good news. I find myself breathing out.

Apart from all of that, I’ve been trying to do as much normal as possible, doing what I can, when I can. Out walking, enjoying the stunning arrival of a bit of summer in winter, or was that Spring? It’s hard to tell. Lots of lovely outings with friends and catching up with some old colleagues. Two weeks ago I went East to Essex with one of my oldest and bestest. We went for a girlie spa break and managed to pick the summeryest weekend February has ever seen. We spent two afternoons on the beach and it was completely blissful. We also managed to catch up with another of the oldest and bestest that weekend. What a treat.

My dearest Sissy Poo face sister came to see me last weekend. We managed a short walk, a lot of eating and also a trip to the cinema. I love her.

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Laying flat out in an MRI machine strapped down so you can’t move, gives you too much time to think. This time I was thinking about how I got in to this mess in the first place. I remembered The Prof telling me I shouldn’t be there, that I didn’t meet the “cancer criteria”. I don’t know if that makes me feel better or worse. Did I eat too much cake? Should I have drunk all the wine? Did I need to work all those hours? Should I have slept more? Does that mean I just have really bad luck? It can’t really be as simple as that. The following day, an article arrived in my feed which reminded me of all the things I learnt very early on in the diagnosis. Please have a read of the article if you have a few minutes What causes breast cancer? There are LOADS of risk factors that contribute to who, why and when a person gets breast cancer. There are obvious ones, like smoking, and less known ones like height and when you start your periods. Yes really. So the point is, that there are things we can all do to be healthier, but maybe the wind was just blowing in the wrong direction that day.

For the things over which I have no control, I must let go.

Big Love, AG xx

#Shinglesreallyhurts

#Macmillan

#Breastcancercare

#Breastcancernow

With huge thanks to my friend Nicci who sent me Bryde’s album:

Title taken from: Bryde / Like an Island / Steady Heart

One more to get out of your skin
Rule out any truth you might speak
Watch out, there’s a flood rushing in
And underneath a numb there is a fire racing heartbeat

This love is as elusive as I sweet
Warm up and it slips through the night
Watch on, never getting it right
The time is wrong we don’t belong in here

But I don’t wanna leave it there
Suspended in crowded air
So I go back to the room we shared
And underneath the chaos there’s a calm, steady, steady, heartbeat

Battles we’re so eager to win great
For fade any like a minute
Stop start
Where you end I begin
Rummaging through a room as in the dark

I don’t wanna leave it there
Suspended in crowded air
So I don’t wait, just get out of here
Cause far beyond the chaos there’s a calm, steady, steady, heartbeat
Steady, steady, heartbeat

I don’t wanna leave it now
You melt wearing the crown tonight
Stay still, but you don’t know
Just come and go and throw it all away
With every, every, heartbeat
With every, every, heartbeat
With every, every, heartbeat

2 thoughts on “far beyond the chaos there’s a calm, steady, steady, heartbeat

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