…STAR of the show at the recent parliamentary launch of the secondary breast cancer report. Emma has been campaigning and fundraising for her treatment, and you can check out her blog here.
https://theonewhereifightforeverylastmonth.wordpress.com/
She has recently received what she calls “good news”, in that her cancer has “changed” and is now HER2+, previously it was negative.
Dr Kath Thompson author of From Both Ends of the Stethoscope, comments: “That is potentially very good news, as there are several anti-HER2 drugs available which Emma’s cancer hasn’t been exposed to yet. Hopefully it will give her chance to stay one step ahead of the tumour until even better drugs come along.”
Previously, Emma wrote for Pink Ribbon:
What a difference a month makes………
Last month (October) I was speaking to MPs and health professionals about living with secondary breast cancer, at the report launch (Breast Cancer Care: Secondary, not Second Rate). A small matter of a scan and subsequent disease progression news has sideswiped me in the weeks following that speech.
You’re probably wondering why I am so shocked. My disease is a known entity and the inevitable outcome is no secret. Nine weeks ago I had excellent scan results showing some tumours had disappeared and some had shrunk. I relaxed a little, focused on finishing the chemo and allowed myself to hope I might have a period of time off treatment. I fell into the trap of believing my own hype, I have outlived the average life expectancy by three years, it’s so much easier to think I will continue to do that. Apparently my cancer has other ideas.
I spoke at length about my daughter in my speech and that I often advise that if things in life ‘scare the pants off you’ they’re probably worth doing. For the record the next part of this nightmare does scare the pants off me and that doesn’t make it a worthy life experience. Dying was not part of that piece of useful advice!
I have a few options. They’re being explored by my medical team at the moment, so I wait to hear. The reality is there is a new family of drugs that are on the market now that are too expensive for the NHS to fund. They could help me. Nothing in this process is guaranteed but it’s a chance.
So in the absence of a medical trial, gaining access to them on compassionate grounds or the other option which is more chemo I am planning what I do next.
I shared my speech on social media and it has been shared over 600 times to date. For all the ‘God bless’ , ‘it’s not cancer that kills you it’s chemotherapy’ and ‘ have you looked into the cancer conspiracy theories?’, the response has been amazing . I have been interviewed on local TV news and papers. The publicity is useful in raising awareness of my story but the reality is that it doesn’t get me the drugs I need.
Last month where I felt my disease is a dirty, unspoken and slightly embarrassing dark side of the pink, fluffy carnival atmosphere of breast cancer awareness month people started listening. I need more to listen, share and support my story. I am going to have to fund these drugs myself.
My 13 year old daughter said to me last night, ‘it will all be ok though won’t it Mummy’. I had to say ‘No darling, eventually it won’t be’. Time is running through my fingers like sand and things won’t ever be ok again.
My fundraising page is www.youcaring.com/emmacairnstreatment
