Only the Hope is Chronic

Elpis and the Lepidopterarium – coloured pencil on canvas, February 2020

Welcome back folks to, what appears to be, the annual blog! 

I was inspired to take to the keyboard again after participating in my first patient advocacy interview – on the subject of oncological psychology. I was asked to describe my experiences of secondary breast cancer for research purposes, which I so hope will better affect the support given to future sufferers of the disease. It was great to be heard for once and it’s prompted me to address some other things about the illness that a lot of people are getting wrong or don’t understand. It’s mostly the result of public misinformation and the lack of statistics around secondary breast cancer, so I thought it was a good time to spell out a few facts.

A Few Facts

1.Secondary breast cancer is also called stage 4, advanced or metastatic breast cancer (MBC). These are not four different things – they’re one and the same. I always use the term secondary breast cancer or ‘secondaries’ because that seems to be the term more commonly used in the UK. 

2.Secondary breast cancer is not a new breast cancer! It means the breast cancer that was originally diagnosed and treated has spread to other parts of the body. In breast cancer these other areas are typically (but not limited to) the bones, lungs, liver and brain and it is still breast cancer, even though it’s now in these other areas. 

3.Secondary breast cancer is an incurable and life limiting disease. It is treatable, but the median life expectancy for someone diagnosed with secondary breast cancer is only 2-3 years and approximately 31 women die from it every day in the UK. It is not a chronic condition!

It is not a chronic condition!

My breast cancer has spread to my bones. From the top: I have ‘deposits’ on my skull (I guess that means tiny specs of cancer – I keep meaning to ask, but I forget every time); there are extensive tumours on my spine, from top to bottom and front to back, both shoulders, shoulder blades and the left collar bone, also my ribs and sternum, my pelvis and both hips. I’m very well covered!

As a result I am advised not to fall (quite the challenge for me), run, jump, skip, dance wildly, climb, cycle, carry anything heavier than ‘regular’ shopping or do DIY. I am also a high risk for spinal compression injury so I carry a card with an emergency number on it ( I realise this will be pretty useless if I’m found unconscious) and recently there was some concern that my right hip might need pinning or replacing. Thankfully my orthopaedic consultant thinks not – for now at least. 

Now I know I haven’t given so much detail before, mostly because I think it makes for uncomfortable reading, but details are important. I like details. When I was first diagnosed with secondaries I scoured the internet to find someone ‘like me’ – someone with just as many bone mets that was still alive five, seven, even ten years on. I wanted to have some hope, a cancer benchmark if you like. They might be out there, but I haven’t found them yet and there are no stats to go look at either. If someone newly diagnosed with secondary spread to their bones stumbles across this post, I like to think it might give them that glimmer of hope I’d looked for. I’m coming up to 3 years of survival; I’m still well and active, in spite of the fact that almost my entire support structure is affected; I’m still on the same treatment I started back in 2018; my cancer is still stable – according to my last scan – so I’m not doing too badly! The only issue I have currently is my white cells plummeting on and off, which is a pain as it means that one of my drugs will have to be reduced, but even this may be just a temporary blip. 

Red Flag Symptoms

While I’m here, I’d also like to use this post as an opportunity to remind anyone that is worried they may have secondaries to get checked! Do not allow your concerns to be fobbed off or ignored, push for the scans if you have to, and in case you’re not sure what you need to be looking out for, take a look at this infographic created by ‘abcdiagnosis’ that was designed to help recognise red flag symptoms.  

I wrote all this without much of a plan and I haven’t a bloody clue how to conclude, so I’ll simply ramble a bit about the drawing I’ve used to illustrate the post. It is surreal and may seem grim – I’m not altogether sure what my intentions were when I made it, but they weren’t at all negative. The fancy title ‘Elpis and the Lepidopterarium’ means ‘Hope and the Butterfly House’. (And yes, it is for sale!)

The little girl is me, holding a golden chrysalis, and she still has a lot of hope.  

“The capacity for hope is the most significant fact of life”

Norman Cousins

14 thoughts on “Only the Hope is Chronic

  1. Sara. Gosh I had no idea it had spread to so many places. It is because when you write one feels such strength, courage, authenticity … you are truly an inspiration. Hope is stronger than FEAR and you are a shining example. Sending you a huge, huge hug and lots of love and hope that in the not too distant future I will make it over to the UK and if so, it will be a blast when the gals get together. Another tight, big whopping hug. Keep sharing. You are amazing.

    Sheila xxx

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  2. Thank you for sharing Sara, I think of you often and infact yesterday was wanting to reach out to see how you were doing.. I had not seen a post from you for a little while and hoped you were coping okay…especially with all the lockdowns and feelings of isolation that can be extra to deal with. As always I think you are remarkable and courageous. Mummy had her secondaries for quite a good number of years…she like you was brave and head strong and she fought like a lion…always said she was not going to let the cancer win. Love you Sara, keep on keeping on. 😘♥️

    Liked by 1 person

    1. Thanks Dom! I’ve been trying to avoid social media as much as possible as I find it quite toxic and time consuming. I just dip in and out. Wallowing in isolation has been quite wonderful for me as I can get a lot of work done, but I’m looking forward to more freedom and contact. I’m quite happy and well right now. Thanks for thinking of me! Lots of love. Xxx

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  3. Hi Sara, great blog as always, lovely to know that you are currently feeling well and upbeat. Sounds like you have embraced isolation for its benefits but I’m sure you will enjoy being out and about a bit more as restrictions lift. With love, Sue

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  4. Hi Sara,
    It was good to see this. It resonates so much.
    When I was first dx with secondaries (bones like you) I wanted to find examples of people living for longer with secondaries. My mantra has always been hold on to hope. It seems we are similar in that too.
    I think it so important to share our experience and hope it gives hope to others. I have just had the anniversary of my secondary dx. Just moved into my 11th year! 😁.
    Let’s keep holding on to hope and spreading hope to others
    Very best wishes,
    Julie x

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  5. Thank you for sharing this with us. I too have secondaries and would love to have the confidence to share the reality, but then I don’t want the ‘poor you’ looks that I imagine come with it. Whenever I post anything I always get told-you are so brave, you are amazing!! No I’m not-I’m just doing what I need to each day to keep myself alive for as long as I can to make memories with my partner and children…

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    1. Thanks Kirsty! I know what you mean about the ‘looks’ and comments about being brave or strong etc, though I don’t mind being told I’m amazing! 😬
      I hope you stay well for a good while and make lots of happy memories!

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  6. So grateful for your explaining more fully your journey with horrid cancer.
    Debbie and me had a little meetup trip to Brighton and chatted about you .
    Sarah we were really wondering how you are doing.
    We enjoyed a special creative art shop everything was made by a local artist.
    The earrings were so creative and called out Sarah !!
    So Debbie is sending them to you with our
    Hugs and love always.xx

    Liked by 1 person

    1. Ooh, that sounds exciting! Thank you for thinking of me. Great that you’re able to meet up now as well.
      Right now I’m feeling well. I have some scans next week and another meeting with the orthopaedic consultant so keeping my fingers and toes crossed!
      Much love to you and Debbie! Xxx

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