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.
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