My SBC Journey - Jane

When were you diagnosed with SBC?

July 2016

How were you diagnosed with SBC?

I’d been on holiday to our favourite bolt hole in Turkey, but I’d struggled sitting on a sun lounger and found walking up steep inclines somewhat sore on my back. Around 3 weeks after returning home I contracted pneumonia and was briefly hospitalised locally. A CT scan showed some nodules on my lungs – not uncommon after an infection however the Consultant who came to see me dismissed my worries and simply said come back in 6 months for a rescan. I reminded him of my primary diagnosis of Inflammatory Breast Cancer (think he missed that in my notes!) and commented “well that might be a bit of a game changer” and walked off. I contacted my wonderful Consultant in Edinburgh, was seen 24 hours later, scanned 2 days after and 4 days later was told my breast cancer had indeed returned in my bones. 

What has been your treatment Journey?

Where do I begin!! 

I started as many do with Letrozole and Denosumab injections. A little progression saw a change to Anastrozole then after a year a little more progression saw Capecitabine. I’ve had radiation to all of my boney mets. In December 2019 a scan showed multiple lung mets and I started on weekly Taxol. Its fair to say Chemo and I have never been good bedfellows and toxicity has always been a significant issue. My Consultant tells me it’s the way I’m wired! In August 2020 saw liver mets added into the equation and more Taxol, stopped in December when a scan showed it had done little. Eribulin started on Christmas Eve but the last scan in March showed even more liver mets, increased activity in my boney mets BUT my lungs looked great! I’ve just completed my 1st cycle of Palbociclib and Fulvestrant. No hospital admissions, no nausea, no Levomepromazine pump and normal(ish) bloods in 3 weeks. Bliss for me!! 

What would have helped make your journey so far easier?

I’ve found this quite challenging to write simply because we are all so different. There’s no handbook on how to cope or understand the challenges a diagnosis of SBC brings. Perhaps a central source for information. You can spend hours trying to find something that might help. Having something for a partner to read, understand or be part of. Partners can often be left behind when so much is aimed at you. Remember them during your appointments. I’ve learnt to decant to Maggie’s with Mike so we can digest the information we’ve just been given, and Mike can ask questions as the staff are so good at putting into language he understands.

What advice would you give someone who has just received their diagnosis?

Don’t use Dr Google. It’s simply not worth it and the information is almost always erroneous.  

Try to continue to do the things you enjoy doing. I continued to ride until 3 years ago and I continued my involvement with an Amateur Operatic Society. Instead of riding I learnt to write for Dressage tests and now write for a few judges where I live, including International and Olympic judges. I also own a share in an up and coming 3-day event horse. 

Learn to be your own advocate. No one else will do it for you and you need to develop a thick skin and don’t take no for an answer!

Listen, ask questions – nothing is too silly or daft. This is you after all.

Find support that works for you. There’s no one size fits all.

Read. Research. Ask more questions. Repeat!

What is your favourite holiday destination?

Turkey is a firm favourite with my husband and I. He introduced me to the country (I met Mike when I was just finishing my primary treatment in 2012. We married in 2017) and I love the people and its culture.

Our Honeymoon was a 2-week Mediterranean Cruise that took us to Florence, Rome, Monaco and Figueres in Spain, home of Salvatore Dali – the museum is wild!

In 2018/19 we saw New Year arrive anchored off St Lucia at the start of a Caribbean Cruise that was our holiday of a lifetime. Hogmanay in St Lucia on a catamaran and New Year’s Day in Guadeloupe on the beach where they film Death In Paradise. We were also very fortunate to spend a day on the Island of Mustique. Few get to do this, and it truly was breath-taking. 

Otherwise, you’ll find me in a field indulging in my passion for 3-day eventing or at Silverstone for F1.

Do you have any great TV/film recommendations?

I have a few! Carry on up the Khyber (I blame my late father!) Evil Under The Sun as the soundtrack features Cole Porter, All The Presidents Men, Sweet Charity, Dr No & Skyfall. If you love drama that covered catastrophic events, then I’d suggest Chernobyl. I love Line of Duty and binged watched Too Close last weekend. 

Favourite books?

Letters From Father Christmas, JRR Tolkien

Rage by Bob Woodward

A Child’s Christmas in Wales by Dylan Thomas

Becoming. Michelle Obama