Living on borrowed time…

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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!
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Appearances can be deceptive….

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I’ve been meaning to update this for weeks (OK months) but, quite frankly, life has been getting in the way. Until the end of March I was busy getting on with life – working two days a week for my lovely PR clients; exercising regularly (I love Aquafit!) and generally enjoying life to the full.

Ray decided to take early retirement in March so we can spend as much time as possible together, doing all the things we planned to do ‘in the future’. My future is now and we can’t put things off so we went in to full-on planning mode with trips to Guernsey and Majorca to see friends booked, and then a mammoth 7 week trip ‘Down Under’ planned for December/January with Hong Kong, LA and San Francisco thrown in for good measure (with permission to skip one Herceptin treatment). 

We enjoyed a fantastic cruise at the end of March and then on April 14th our world came crashing down – again.

Routine scans which I’d had before we went away show the Herceptin alone is not holding the cancer at bay. Despite looking great (as you can see from the photo above!) and feeling really well (apart from the tiredness that goes with the territory) two of the three vertebrae in my spine have deteriorated, there is a new cancerous nodule on my lung and two other ‘areas of concern’ – my right shoulder blade and an area between two of my ribs.

To say the rug was pulled out from under us is an understatement. Not only was it pulled out, but it sent me somersaulting across the floor and crashing into a wall. We were – and still are – in shock. We are not naive and knew that at some point the Herceptin would stop being effective but simply didn’t expect it to be this soon. I have met and read about ladies who’ve been on Herceptin for years (in one case 11!) so to be on it for less than 12 months is a massive blow.

Fortunately for me there is a Plan B. Thanks to the Cancer Drugs Fund I have been granted funding for Kadcyla – the ‘cruise missile’ of cancer drugs for HER2 positive advanced breast cancer and so, three weeks on, I am back in the chemo unit, hooked up, and visualising the Kadcyla, travelling through my system and seeking out the evil cells before obliterating them! 

Kadcyla is Herceptin with chemo embedded in it and so there could be a range of side effects – but then again there might not be so I’ve avoided reading the three pages provided and will simply wait and see what happens. I’m also being given a different, better, bone strengthener, Denosumab, today and that too can cause side effects so it’s a bit of a lottery as to which I might get and what might have caused it! (You can read more about Kadcyla here: http://www.breakthrough.org.uk/blog/kadcyla-patients-need-better-access-life-extending-drugs-1)

As with last year’s chemo I do have to be careful about the risk of infection as that can impact on my blood count and determine if I can continue treatment. Sadly this means no more Aquafit (or swimming, jacuzzis, hot tubs etc). I’ll also be getting some advice next week from my oncologist about what exercise I can do, because of my spine, but I think I will be pretty much restricted to walking, and not much else.

Kadcyla is hugely expensive (£90,000 for 14 months’ treatment) so I am incredibly grateful to get the funding form the Cancer Drugs Fund. It’s not licensed by NICE yet as there is a battle between the pharmaceutical company and NICE about the price and the perceived cost/benefit analysis. Kadcyla only went into clinical trials in around 2011, with the aim of extending life for a number of months. It’s actually been hugely successful with ladies surviving on it for a number of years – working and living ‘normal’ lives (as normal as they get at this stage anyway!) 

So, although it’s been a case of one step forward and about ten back, I’ve here, with the best possible drug regime and care, and the love and support of amazing friends and family. 

Our plans for this year continue. Australia has a slight question mark hanging over it as it will very much depend on how I respond, what the scans show, and whether I’m allowed a break in treatment.

Three weeks in from the new diagnosis it still seems unreal. I haven’t had any pain at all so it makes it harder to accept. I know I should be grateful for that, but my body is literally dying from the inside, and there are no visible signs. 

I am bouncing back and thinking positive but will readily admit that this time round I’ve felt very, very angry, and upset. Ray and I have cried together – and separately – but ultimately are so lucky to have each other. We laugh a lot too, something I hope we never lose.

Thanks to everyone who has been in touch over the last three weeks – and apologies if I haven’t replied yet. This being ‘ill’ business is so time consuming! We’re hugely grateful for your love and support.