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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The chemo fog is lifting…..

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Apologies for the lack of posting over the last couple of weeks – two contrasting reasons for my silence! In the run up to my second round of chemo on February 3rd I had an amazing week, full of energy, seeing friends, lots of medical appointments (both for me and my mum) and generally feeling great. In comparison the last week has been one of complete inertia and utter exhaustion! Although I had been warned about the cumulative effects of the chemo I really didn’t expect it to happen so much after round 2. It is also particularly cruel after having such a great week to be plunged into a pit of tiredness that seems never-ending.

BUT the fog is lifting and I’m just looking forward to the coming week where I will feel ‘normal’ before round 3 on February 24th, and I’m determined to be more realistic about the tiredness next time round. My oncologist has also given me the “you have an aggressive form of cancer and we are giving you the most aggressive treatment we can so you will get VERY tired” lecture so I realise I have to accept it and just let my body do what it needs to do. On a very positive note my dodgy boob is already responding to the chemo (oncologist said this might not happen until after round 2) but even after my first chemo the blisters have healed and the rash is receding which is fantastic. Am hoping that the internal effects of the chemo on my tumours will be just as impressive 🙂

Once again my friends are proving an endless source of love and support – messages, lifts to appointments, cooking fabulous meals for us, unexpected pressies, we are truly blessed to have such amazing people in our lives and I will never be able to thank them enough for everything they are doing to help Ray and I. One friend – Becci – has made the amazing commitment to run the St Albans 10K in my name for Macmillan Cancer Support on Mothers’ Day of all days when she should be enjoying some family time with her two little boys and hubby. This is an awe-inspiring effort and if you can support it in any way I would be so, so grateful: https://www.justgiving.com/Becci-Cussens1

One thing I have become aware of since my diagnosis in late November is that barely a day goes by without a story about cancer being in the news. From supposed miracle cures, to the latest research, to devastating personal accounts of cancer battles, usually with very sad outcomes. The statistics on cancer are stark, one in three people will get cancer, and one in eight women have breast cancer.

One of the latest stories that has caused much controversy is the campaign to raise awareness of pancreatic cancer by using terminally ill patients who proclaim they wish they had breast cancer/prostate cancer/testicular cancer instead http://www.bbc.co.uk/news/health-26064830. The adverts at first seem shocking but when you read the statistics who could blame someone with a 3% chance of surviving five years, wishing they had a form of the disease with an 85% survival rate? And who wouldn’t rather have a disease with obvious symptoms, rather than one that can be easily misdiagnosed or dismissed as ‘a bug’?

Personally I feel very lucky to have breast cancer – so much is known about it, so much money has been raised to invest in research and develop new treatments, and I am also so lucky that my GP referred me for investigations the first day she saw me. So often the prognosis is poor because of a delay in diagnosis and so if I can get one message across to people it is to push for a referral if you feel something isn’t right, and if you are a GP then PLEASE refer patients on as soon as possible. If you don’t understand or recognise something then refer it on, that’s what the experts are there for. From the day I saw my GP (a Friday at 4pm) it took just 18 days (12 working days) for me to be referred, seen at the specialist until, scanned and biopsied and to get the initial cancer diagnosis. Research shows this is not always the case http://www.bbc.co.uk/news/health-25274287 and my consultant praised my GP’s actions – so often he sees women who have been given 6, 7 or even 8 courses of antibiotics before referral. As patients we are utterly dependent on the medical professionals to act swiftly – I am very definitely one of the lucky ones.

On a brighter note I’m off to get my second wig trimmed this morning. Razberry Ice Gia (yes, it is spelt with a Z!) finally arrived after a month, but was worth the wait (see pic above). Loads of lovely highlights in it so I can be either Cassidy or Gia when going out. As my lovely friend Mags pointed out, Chestnut Cassidy is my 70s porn star name, while Razberry Ice Gia sounds much more like a rapper so my alter egos are a porn star or rap star – what a choice!