Living on borrowed time…


Three years ago yesterday (November 26, 2013) I was diagnosed with breast cancer. On June 2, 2014, it was confirmed that I actually had Secondary Breast Cancer (SBC), where the breast cancer had spread, for me to my lungs and spine.
The reality is that I already had secondaries when I was first diagnosed (known as the double whammy), but I’m glad I didn’t know that at the time. I really don’t think I could have coped with the information. For me the primary diagnosis was enough of a shock and enough to process and come to terms with.
I admit to being completely ignorant about Secondary Breast Cancer, mainly because it simply isn’t talked about. The pink, fluffy impression of breast cancer fundraising and awareness infers it can be cured. For 70% of women and men diagnosed with primary breast cancer that will be the case, but 30% us will develop Secondary Breast Cancer which will kill us. It cannot be cured and we are all on treatment for life – however long that may be – eventually becoming one of the 12,000 people who die of SBC in the UK each year. That’s 33 people, each and every day.
It’s difficult to get accurate statistics about SBC because many hospitals and trusts (including my own) do not keep proper records, even though they are supposed to. But, from what we do know, only 22% of SBC patients live beyond five years, and the average life expectancy of someone with SBC is three years. I was diagnosed three years ago yesterday, a very poignant landmark day for me.
From here on in I really do feel I am living on borrowed time – but you can rest assured I intend to pack a lot of living into each day!
I chronicle what we (me and my lovely hubby Ray) get up to on Facebook and have finally stopped feeling guilty about the holidays we go on, the day trips we make, the weekend breaks we take, and the fun we have.
I’ve always been hyper-organised, planning ahead and making the most of deals and offers, and for a while the cancer took that away from me. I felt I couldn’t plan because I simply didn’t know what might happen. Would I feel too ill? Would I have to cancel? Would we lose money?
Now I just go for it. I try to book hotels which only require a small deposit, or which can be cancelled near to the arrival date if necessary. I also book in advance to get cheap flights which wouldn’t be worth claiming for on the insurance if we did have to cancel.
I’m not allowed to do long-haul flights or any more cruises, so feel incredibly grateful to have seen as much of the world as I have. We have just about persuaded my oncologist to allow us to do a driving holiday (Ray would love to drive through France to Spain and Italy). Instead of plotting a route to see famous landmarks Ray’s working on an itinerary that passes major hospitals in case I need treatment urgently!! If my oncologist is happy with the plan we might get to go on an “awfully big adventure.” 😃
People make comments: “Ooh…you’re always away! When’s your next holiday? You two certainly get about!” At first I felt embarrassed and guilty but now I simply reply that I’ve got a lot of living and holidays to pack in to a limited time – so there. It usually shuts them up!
I continue to work as a PR Consultant for around five days a month (to help pay for all the fun things we do) and am involved in various charity endeavours.
My dream is to win the lottery, not have to work at all, and dedicate all my spare time to awareness and advocacy around Secondary Breast Cancer for the charity Second Hope, as well as continuing to support the Relay For Life Aylesbury. I’ve also been interviewed by the Public Affairs team at Breast Cancer Now and may be used in future campaigns around the availability of Kadcyla through the Cancer Drugs Fund.
In terms of my medical journey I realise I haven’t updated this blog for several months – huge apologies – but I’m going to make it my New Year’s resolution to post an update (even just a short one) each month. It certainly hasn’t been because things have been quiet recently! I know many of you keep track of me on Facebook, and I can’t thank you enough for the lovely messages and comments you send, but for those who don’t know the latest, here goes …
After the hiccup with the scan reading in April (which said there was significant growth in one of my lung tumours, when it was actually 1.5mm so could be classed as a possible error in reading) I’ve continued on the Kadcyla chemo every three weeks.

Unfortunately my scans in July showed another growth in the size of the same lung tumour (in my right lung) which couldn’t be dismissed. One more millimetre and I’d have had to stop the Kadcyla which has done an amazing job healing my spine (there is no evidence of active disease in the three affected vertebrae at the moment) and kept the left lung tumour stable for 18 months.
We had a few weeks of agony investigating and being assessed for a very new clinical trial at Oxford (SYD 985 – so new it doesn’t have a name!) It’s still phase 1 so VERY early stage and only 33 people worldwide have been given the drug so far (one of whom died due to the side effects ☹️. The downside would have been the very severe side effects, so much so that the Doctor leading the trial said he’d be loath to put me on it because I am actually incredibly well and the drug would make me very ill!
Biopsies were sent to the US for assessment regardless, but during the waiting period the clinical trial doctor suggested to my oncologist that I might be a good candidate for Thermal Ablation on my lung tumour.

To cut a long story short that is exactly what happened and on September 22nd I spent the night in the Churchill Hospital in Oxford having my right lung tumour ‘cooked’. Under general anaesthetic I had metal rods inserted through my ribcage into my lung, piercing the tumour. The rods were then heated up to the temperature of a boiling kettle, cooking the tumour until it was destroyed.

It was an incredibly straightforward procedure and the Oxford team, who will be monitoring me and carrying out my scans every three months, have said that as soon as the right lung tumour starts to grow they will carry out ablation on it too. This means that I can stay on the Kadcyla until there is progression in my spine, or any new tumours pop up – hopefully not for a very long time!
I didn’t expect there to be any real benefits from the ablation – apart for killing off the tumour – but I have had more energy, mentally have felt brighter, and don’t get breathless when walking longer distances. Ray had become an expert at spotting benches so I could have a little rest, but I rarely need to stop nowadays which is fantastic.
As I write we’re on a flight coming back from Lanzarote, where we’ve enjoyed 10 days of beautiful warmth and sunshine. And yes, before you ask, I do have other trips planned! Four days in Germany on a girly trip to visit the Christmas markets (flights cost £60 return as were booked in April!), an overnight stay in Scunthorpe (ooh the glamour!) to visit my brother and his family to exchange pressies, and then five nights in a lovely Brighton hotel, including New Year – paid for by Tesco Clubcard vouchers 😊
I’ve bought my 2017 diary and we’re already starting to fill it with plans, working around my treatment schedule and hospital appointments as best we can.
Reality hits tomorrow when we get home as next week is a real ‘fun-packed’ extravaganza. Monday – blood test and flu jab; Tuesday – chemo at Stoke Mandeville Hospital; Wednesday – bone scan at Wycombe Hospital, Thursday – Living with Secondary Breast Cancer day in Oxford. Will be balancing it with some Christmas shopping in Wycombe during our three free hours. I have to be injected at 10am and then go back at 1pm for the scan. It’s then coffee with a friend on Friday and a spa day on Saturday.
Life is for living and that’s what I do – and would heartily recommend you all to do the same!


31 thoughts on “Living on borrowed time…

  1. We are so looking to sharing 2017 with you both with visits (both ways), Lakeside, that weekend away and anything else we can muster up. Karen says the odd glass of wine is in order, too.
    Fi and Ray, you continue to be THE epitome of the word “inspiration.”

  2. Rachel Baddeley

    What an amazing couple! Don’t feel guilty at all-you two deserve all the holidays you are well enough for! Such an inspiration & a thoroughly lovely couple! Keep going! xx

  3. Georgina Elliott dew

    I love your blogs and facebook entries, your enthusiasm and bravery is inspirational, enjoy your adventures and we’ll enjoy them with you. Lots of love x

  4. Sue smith

    You are an amazing woman and Ray is amazing too. Don’t ever feel guilty about the holidays etc (such a Capricorn). You carry on and May every day be filled with laughter. Xx

  5. Well Fiona you have certainly given cancer a run for it’s money. Carry on doing what you are doing cos! When you think about it non of us know ‘when time will be up’ so one day at a time is the best way forward.
    Fiona you are a well loved lady and that is your sword in this battle for life.xxxxxxxLove Sheila .

  6. Gary Gardiner

    You keep enjoying your holidays you deserve each and everyone 👍
    Yours and Ray’s fight is also ours and we are with you all the way x
    Hopefully when you’re down this way over new year we can catch up and an ice cream on the pier with Boo & Oz lol
    Hope the week is easier on you
    Take care
    Love you both
    See you soon
    Me & the Boys

    • You beat me to it! Definitely want to meet up at New Year (there from 27th-1st) and want you to hitch Ray up to one of the boys so he can get towed along on his FreeWheel!!
      Love to you all and see you next month! Fi xx

  7. Kate Kelliher

    Fiona, have just got back on to LinkedIn to kick start my career and was so sad to hear your news, but hope you can squeeze me in to your 2017 schedule! Would be great to catch up again xxx

    • Thanks so much for the comment Kate and sorry for the delay in replying. Would love to meet up and hear about what you’ve been up to – your girls must be so big!! Lunch on Henley one day perhaps? 💕💕

  8. Olive

    Fiona, life is for living, however it may pan out. Go for it!!
    Sending lots of love to you and Ray ,, may see you at Mums sometime before Christmas. Olive and Harvey xxx

  9. Anthea

    Lots of love to you and Ray xx that ablation technique sounds to have been wonderfully helpful giving you your strength back. Woohoo !

  10. joanne barton

    Hi Fi. I love your wonderful blog which I see means a lot to many people. You and Ray deserve all those trips and I hope you have a terrific time. Can’t wait to see you at our Christmas get together and send you and Ray big hugs. Lots of love Jo Barton xxxx

  11. I so enjoy your zest for life! You are truly an inspiration and example for others to follow. I am 17 years Surviving Breast Cancer and grateful for every day above ground.

  12. Found your blog after watching you on Sky news this morning. I find it alarming that many hospitals and trusts do not keep proper records /accurate statistics about SBC. However, I’m not surprised and this should be changed. Keep up the good work and enjoying yourself!

    • Thanks so much Shirley. It is terrifying the lack of information that is collected. We know that one in eight will be diagnosed with primary breast cancer, and 30% of us will receive a secondary diagnosis where is spreads to bones or other organs: of those only 20% will survive five years. It makes it so difficult to plan treatment and care provision when no data is available. Only around 7% of funding for breast cancer research goes into SBC – the one that kills.

      Breast Cancer Care have produced three excellent reports into SBC which you might want to look at as part of their Secondary Not Second Rate campaign. They will also be at all the political party conferences next month. If there is anything I can help with let me know 🙂

      • Thanks for your reply. I don’t have a secondaries-hopefully it will stay that way- but I am passionate about patient rights and stats etc. My campaigning is to raise awareness about permanent alopecia caused by Taxotere. The oncologists refuse to acknowledge it or at best say it’s very rare which is just a lie. The classification table puts it in the ‘common and frequent’ category but it stays a taboo subject. I’ve been fighting it for 11 years. There is another equally efficient drug out there (that doesn’t have this problem) but for whatever reason, best known to them, it remains a taboo subject. Anyway, I keep writing articles for the media and taking part in podcast health programs. It’s important we fight for what we believe in, no matter what that is. SX

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