Palliative chemotherapy. Ugh.

Yes. Next week. Meeting on Friday. Had my bloods done on Tuesday, ECG just before I pick up my first course of capecitabine. I got my information leaflets through yesterday.

I’m not wildly enthusiastic about this turn of events.

We knew the mets were growing, but I still feel really well. I’ve felt really well throughout this, apart from side effects of chemotherapy, radiotherapy, surgery, oestrogen antagonists, everolimus… so there’s something counter-intuitive about taking a medication with a list of side effects as long as my arm. I’m just hoping I’m one of the lucky ones.

I wasn’t expecting to have such a visceral response to the word “chemotherapy”. Whenever I see it as applied to me, I feel my whole body cringing. Because that was a grim few months of feeling tired and unenthusiastic, and slightly sick a lot of the time, and not enjoying food – or wine – or even tea! Not enjoying tea might have been worst thing, actually. That feeling of mouth-scald and metallic taste and, just ugh, no.

Palliative is not a great word, either. I’ve been “living with” for years now, but palliative sounds a bit more like “dying of”, and I’m not crazy about that as an idea. We are a new group, we “livers with”. We don’t fit the prevailing narrative well. I was referred to the local hospice for counselling 11 years ago, and it just didn’t feel right.

The other aspect of all this, though, is the logistics. Suddenly I will need a blood test every month. I have to make special arrangements to get my medication. I’m tied down.

Being a traveller has always been a huge part of my self-image. The thing that’s kept me going through lockdown has been my fantasy about pootling down through Italy, and beyond. We had a big trip planned for last June – three weeks in Malaysia, five weeks in Australia. It was cancelled because of Covid, and I have a feeling that all those dreams might now have to be modified a lot. Brexit means we don’t have reciprocal health care arrangements with the EU, so I’m going to need to have expensive and comprehensive health insurance to go anywhere outside the UK. I’m going to be more vulnerable to infections, my immune system is going to be compromised. Life has become narrower and more complicated all in one go.

However, I started this blog several years ago because I thought I was dying. I wanted a place to express my thoughts about that, and to think about how to die properly. Turns out I was a bit premature, and I’m hoping that I’m a bit premature this time, too. New treatments come on stream very quickly, and I obviously have relatively slow growing tumours, so I remain hopeful.

I’ve read a lot about death and dying over the last few years. It’s inescapable, sorry. Either you believe you’ll carry on being you after death, or you don’t. Either way, the best way to prepare for death is to live. That’s all I’ve come up with. I share that insight with you freely, and with love. Get on with it.

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Ooh look, World Cancer Day just happened

It kind of passed me by. I’m never entirely sure what it’s for, anyway. My twitter feed had a few people saying “Yay! I’m cancer free now”, but other than that it didn’t have much impact.

However, a couple of things have happened that made me feel I should do a post here.

Firstly, my son came downstairs a couple of nights ago, looking like a ghost. Really pale. He plays this complicated online game, and from that has built up some online friendships. I kind of monitor them to make sure he’s not doing anything stupid, but didn’t really realise that he did has built up real connections with people over the years. He was pale because a Russian friend of his is stepping back because he has Stage IV brain cancer. He’s 20, and he’s not got much longer to live.

We talked about that, and my son also talked about the people he’s known online who’ve just kind of disappeared. And how he’s probably disappeared from people’s lives, too. I realised I’ve kind of disappeared from here, and that people who I followed have stopped posting. I’m sure it’s mostly for good reasons, and for positive reasons, but I wonder sometimes what happened to them.

The second is the whole World Cancer Day thing, I guess. The cancer narrative remains:

  1. Get cancer. Battle cancer. Beat cancer.
  2. Get cancer. Battle cancer. Lose battle. Die.

I’m sure there are more and more people like me who are living with cancer long term. I was first diagnosed 13 years ago. That’s a long time. It’s been a turbulent journey: I’ve had a lot of surgery now – bilateral mastectomies, oophorectomy (love writing that word), reconstruction, failed reconstruction on the other side. I’ve had chemotherapy and radiotherapy. I’ve worked my way through the anti-oestrogens. I’ve been scanned and prodded and X-rayed and hugged by NHS staff. (The hugging was entirely appropriate and extremely welcome at the time). I’m still here. Things have progressed a bit – I’m likely to start some new and nastier medication in a couple of weeks, but looking back it’s been OK. Apart from the flurries of madness in the few days around appointments, life has been busy and fulfilling. My children can’t remember a time that mum didn’t have cancer. I can hardly remember I time when I didn’t have cancer. It sits there. Most of the time we don’t notice it.

In fairness, the “battle” word is less prevalent than it was 13 years ago. It still annoys me, but I think there is a realisation that it’s inappropriate and painful for people who haven’t “beaten” the “Big C”.

Breast cancer is still pink. And still advertised with boobs. Sorry, chaps, I know you get it too. It must be pretty depressing for men to have to enter the boudoir of breast cancer. But that pink merchandise brings in lots of money for services and research, so we’re probably stuck with it.

So, overall, this is a positive post. I’m still here, still enjoying live, still creative, still laughing. I’m also still anxious about appointments, still grumpy in the mornings, still bored with lockdown. I’m boringly normal – which is an excellent thing.

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Book review -Shadow in the Empire of Light – Jane Routley

Thank you, Netgalley, for letting me read this book.

OK, the first page was a little…ho hum. But I persisted, and I’m really glad I did. It’s a great romp of a fantasy – Routley has obviously had a lot of fun writing this. She has also created a complex world that hangs together really well – a world of mages with magical power, a world with a low fertility rate where family power depends on having children who will become mages, a world where female mages are stronger than males. That adds up to some very interesting power dynamics, enthusiastic sex and a believable heroine navigating the different power streams in her life. And cats. Psychic cats. Oh, it’s fab.

As soon as I finished this one I went to look for other things written by her. I’m really hopeful there will be a sequel. There are a few strings left..

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Advent Calendar alert!

My poor neglected blog. I’m sorry. I’ll try to do better next year.

The trouble is, I have another blog, where I write poems and stuff, and that kind of gets all the attention.

Seeing as I’m here, though, let me tell you about my poetry advent calendar. It’s based on my other blog – fmmewritespoems.wordpress.com – and thing will be going up on twitter – and if you want the full open-the-door experience, you can find it here:

https://adventmyfriend.com/101755/da6c0e0a61/

It’s my way of saying thank-you to some wonderful poets who have made 2020 a little happier than it could otherwise have been. I do hope you’ll check it out.

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Book Review – The Ministry for the Future – Kim Stanley Robinson

The Ministry for the Future by [Kim Stanley Robinson]This is a big book, physically and content-wise: it’s not often I read a book and come away with a list of things I want to look up and find out more about, but this book did that for me. It’s moving and painful and hopeful and inspiring, and I found it utterly absorbing.

What’s it about? It’s about everything, but primarily global warming. The horrors we are unleashing are laid out clearly. This is a call to stop and think and change. Kim Stanley Robinson places global warming firmly in the context of our neoliberal lifestyle and expectations – continuous growth – as if cancer is the paradigm for our society. He pulls in everything – the lack of parity between developed and developing nations, potential technological solutions, the need to sort out global finances and the super-rich if we are going to get any change on this. He segues smoothly between the near past and the future, carrying you along, making this feel almost like reportage, rather than fiction. There are many voices here, all with their own stories.

The main characters are Frank, a young relief worker, and Mary, the “Minister for the Future”. Their paths intersect in an unexpected way in Zurich, but their stories weave around each other, they don’t really merge.

This is not an action-packed thriller. It’s thoughtful and densely packed. It’s one of those books I want to badger people to read.

Thank you, NetGalley, for letting me read this one.

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BCAM: October 7th

Those of us with Metastatic Breast Cancer (MBC) live our lives in three (3), six (6) or twelve (12) month increments. What does that mean? We receive a scan in one of those increments, which tells us how our cancer is behaving. Traditionally, the first pattern is every three months. Adiba has this to say […]

BCAM: October 7th

This sums it up perfectly.

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Cancer: it’s really not a battle

I’ve been on Twitter again, so it’s my own fault, I guess. They are still out there – the cheerleaders shouting on the battlers. The strong, brave battlers, who they know will win this battle because they are strong and brave.

Please don’t.

Here’s why I think it’s so bad:

  1. It’s meaningless. What is this battle? My battle consisted of taking the prescribed medication, signing consent for the surgery, getting to the chemo unit, lying under the radiotherapy machine. They never gave me a sword.
  2. It puts pressure on the patient. (I’m pretty sure there’s a better word than patient, but let’s just go with it). If you’re told to be strong and positive and brave – well, you kind of feel that’s how you ought to be. A lot of the time I was positive and brave, but sometimes I was negative and scared and anxious – and those are perfectly valid ways to feel when you have cancer. And, actually, perfectly valid in other situations, too. It was helpful to have spaces where I could be negative, scared, anxious. The person with cancer shouldn’t have to protect other people from negative feelings.
  3. What if you lose? I feel this strongly, because I’m a loser. I trundle along, I live in denial, I don’t talk about it much, but I am a loser. Those little time-bombs are sitting in there, waiting to explode. Does that mean I wasn’t strong? I wasn’t brave? I didn’t fight hard enough?

Luckily, I didn’t buy into that narrative. I lost because I was unlucky. Wrong kind of cancer. Bad timing.

It’s a bit rubbish, having Stage IV cancer. I’m so glad I don’t have the added burden of feeling that I’ve let people (and myself) down by not being enough of a warrior.

I’ve seen quite a few posts on Twitter recently talking about the battle, and how strong and brave the battler is. I cringe inside. I don’t comment on those posts – I know the people posting are coming from a place of love and concern – but I needed to get this off my chest. It really is time to move on from the language of battle, and find a better way to show support.

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Irisi magazine – healing

You might like to look at this rather beautiful magazine from Irisi especially if you feel the need to contemplate the nature of healing.

You could just look at my poem, Kintsugi, but there’s much much more there.

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Book review – A Room Made of Leaves – Kate Grenville

A Room Made of Leaves by [Kate Grenville]I love Kate Grenville’s work anyway, so it was a massive treat to get a copy of this from NetGalley. Thank you.

This is the story of the early days of the wool industry in Australia. Very, very early – Elizabeth MacArthur travels to Australia with her totally unsuitable husband when the colony is still a convict settlement. I guess those early settlers had the choice to hate or to love their new home, to regret England, or embrace Australia. Elizabeth is canny enough to embrace things. She learns to manipulate her husband as much as possible – she’s a powerless woman in a man’s world.

The heat of Australia, the light, the bush – they shine through this book. Grenville is great at conjuring an atmosphere. She is also constantly aware of the impact of European settlement on the Aboriginal communities, reminding you of what was destroyed as well as created.

We should be in Australia at the moment, but the Corona virus put paid to that. This took me there, a little bit.

This is a great read. Look for other books by Grenville, too – The Secret River is another good read.

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Poetry Friday

Just yes.

Poetry Friday
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