What price my life?

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I’ll start by giving you all a laugh with these photos that hubby Ray took when we were on holiday in Majorca in September. A very sudden – and dramatic – downpour gave me the opportunity to dance in the rain!

I took full advantage of the deluge without thinking what I would look like, in my sack cloth of a dress which I only tend to wear at breakfast on hols, without my fake boob, and I’m not convinced my hair had seen a brush that morning either. Definitely a case of striking while the iron was hot!!

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When I last posted I was a ‘Stable Mabel’ – and I still am as I haven’t had my next round of scans yet. They’ll be in two weeks time with the results before Christmas. I’ve no idea what they will be – I feel fine – apart from the obligatory tiredness – but, as I’ve learnt over the last few months, that means nothing with this condition. Pain can also mean the drugs are working – but a lack of pain doesn’t mean they’re not. We hope for the best but expect the worst. Not a fun way to exist but the most sensible mindset.

We’re currently coming to the end of a lovely week in Lanzarote. We’re making the most of the time while I’m well with regular short breaks (basically every three rounds of treatment and a set of stable scans) which my oncologist is happy to sanction – as long as my blood test just before travel shows I’m strong enough to go. Not much has changed with what we do on holiday. I need to have more breaks when we go out for walks (I can spot a bench at 50 paces!) and sometimes I do have to give in and get a taxi back to the hotel but only after I’ve done a good long walk and am too tired or too breathless. I’m not proud or stubborn and know my limitations so hop in a cab to ensure I can make the most of life.

September was lovely, with our trip to Majorca, but October was a bit of a struggle. Physically I wasn’t great with a cold and then a urinary tract infection, which are more difficult to shake when on chemo and your immune system is shot, and I’ve learned that feeling physically unwell makes it much harder to cope psychologically.

I also had to contend with a change in some side effects from the chemo. A pattern had developed where I pretty much knew to expect around four days of diarrhoea starting three days after my treatment so could plan my diary accordingly. But, just when you think there’s a pattern you get thrown a curve ball – and mine was a nasty case of vomiting and nausea which hit the day after my last treatment. The actual sickness was confined to the first day (but happened in a theatre car park – fortunately it was dark and wet so my misdemeanour wasn’t witnessed by anyone and the evidence was washed away!) but the nausea last for about five days. My lovely oncologist has prescribed IV anti-sickness drugs for next week’s round of treatment so hopefully that will do the trick.

I also spent a lot of October feeling very angry about things – not a healthy place to be mentally, but fortunately I see an amazing counsellor who helps me work through things.

October is a hard month for many of us with Secondary Breast Cancer (SBC) as it’s breast cancer awareness month so everything is pink and fluffy – not descriptions anyone with SBC would use to describe how they feel much of the time. The emphasis is raising funds for research into breast cancer but a miniscule amount (around 3%) is spent on SBC. Given that 30% of women with breast cancer will develop SBC, from which they will die, it seems very unbalanced.

A number of campaigns also annoyed me last month. A posh clothing chain launched a jumper to raise money for Breast Cancer Care emblazoned with the word Lucky on it.  Even women without breast cancer were questioning the logic in it – “Oh, yes. I’m lucky not to have breast cancer” etc etc.

M&S launched a gorgeous range of underwear, again raising money for BCC. The promotion inferred the range was for post surgery patients but on investigation only one bra is suitable for those who’ve had a mastectomy, and it wasn’t available when the promotion started! They coupled that with the social media campaign #showyourstrap, encouraging women to take pictures of their bra straps and donate money to BCC. Again, it beggars belief who comes up with these ideas and it was countered head on by the Young Women’s Breast Cancer Network who launched #showyourscar, with members posting images of their mastectomy scars, illustrating the reality of breast cancer.

And finally, during October, many of us were campaigning for Kadcyla (and other drugs) to be kept available on the Cancer Drugs Fund list. The threat was it would be removed from November 4th and no longer be available to new patients. Those of us already being treated would not be affected but we were fighting for future sufferers. A petition was successful, a new agreement on price was agreed and Kadcyla will remain on the list – though it will not be available routinely on the NHS, and is not available in Scotland, Wales or Northern Ireland, so the fight for wider access continues.

Kadcyla is an amazingly effective drug – but it comes with a hefty price tag from Roche, the pharmaceutical company which created it. £90,000 per year is the price which is bandied about – though we know that’s not the price that’s been agreed with NICE, it likely to be nearer half that. I’m sure people who read about the drug will wonder how Roche can justify charging so much. It does help explain their £9billion profits last year!

It’s hard to read the media reports about it too as Kadcyla is deemed an ‘end of life’ drug, prolonging life when all other options have been exhausted. The average is 9.6 months but that is massively unrepresentative of reality as many women are treated successfully with Kadcyla for many months, even years.

I’ve been on Kadcyla for 7 months already and don’t have any intention of going anywhere soon – and I hope no one begrudges me the funding for the drug which is keeping me alive and well enough to work, care for my family, spend time with friends and make the most of my precious life.

I’m living life to the full, albeit with a price tag around my neck – a very expensive one!