What would you do if you had to find £240 a day to see your child grow up?
What I did was to swallow my pride and ask others to help me, when I was denied NHS funding for a proven treatment. My fundraising since has proven to be literally life saving. It has given me more time to properly nurture my precious son, Callum. It may even provide me with a cure. Hundreds of kind people believed I was worthy of support, generously donating over £80,000 over the past six months towards the £200,000 costs of the world class private immunotherapy treatment (available locally).
Why do I need help?
I was diagnosed as ‘terminally ill’ over three years ago, but refused to accept that I had no hope. Therefore, I diligently researched with my husband, Jim, to find groundbreaking proven treatments. Collaborating with experts meant that I was able find a proven new life saving immunotherapy drug (Pembrolizumab). However, the drug company is bogged down in the bureaucracy of making expensive drugs routinely accessible for all appropriate cancers. My request for ‘exceptional’ NHS funding was rejected and although being raised during Prime Minister’s Question Time has no prospect of being funded by the NHS in the near future. This is despite Pembrolizumab already being available in the NHS, at no cost, for other types of cancer. There is no incentive for the system to fund early access to this drug for my rare bowel cancer sub-type and no means of a patient changing this. Believe me, I have tried. Consequently, my immediate focus had to be on fundraising to cover the two years of treatment I required. I do intend to continue campaigning for other deserving families too.
With fantastic local support, over £80,000 has been raised for me over the past six months. This meant that I was able to start my local private immunotherapy treatment on 1 December 2017, at my local hospital. No words can properly express how grateful I am to everyone who has contributed. Such kindness has made my family’s dream a reality; the gift of extending my life. I am feeling better than I have for years and Callum believes “I have got my mum back!”. But, I do need to continue raising money to cover the ongoing costs of treatment, provided every three weeks.
Why is immunotherapy my best option?
After over 3 years of fortnightly palliative chemotherapy, that was losing traction, there was no other option but immunotherapy for me. It also became very obvious that the NHS approvals system is much too slow and inflexible. Hence, why I am campaigning for this revolutionary drug to be made urgently available for other deserving families who find themselves, through no choice of their own, in a similar position to me.
Pembrolizumab, has been approved in America for over a year now for a very wide range of ‘solid’ MSI-high cancers, which includes my rare cancer sub-type. This was based on a set of startlingly successful results in clinical trials, with some patients even taken out of hospices to resume a normal family life! My collaborative research with experts has also confirmed that this is my only real hope for a longer life (even a possible cure). Well respected senior NHS consultants agreed with me too that Pembrolizumab was my best option, but they cannot yet obtain funding from the NHS. The NHS has chosen initially to make Pembrolizumab available to only a relatively small number of cancer patients. Limiting the cost implications, until the NHS can agree better prices? This process will be much too late for me and many others. Is this fair? Would you accept this if you were in my position?
After many months of exploring every possible way to obtain this drug from the NHS, as some are privileged to do, I have met with nothing but stalling tactics and almost literally ‘dead ends’. I felt compelled to begin the treatment, without all the funds in place, fearing my health was deteriorating too much. Fundraising has been hard work, humbling and life changing. Having started treatment, I am freed from the tyranny of the bi-weekly chemotherapy, I endured for the past three years.
Having relied on the generosity of family, friends, ex-colleagues and kind hearted members of the public, I have been truly humbled how much people care. The response has been totally overwhelming and heartwarming, from all ages and walks of life, including from my ex-nursing colleagues and from many people who do not even know me. Many successful fundraising events have been held, by my fantastic friends, with many more planned. But, I do still have a long way to go to cover the full treatment costs.
Would you please carefully consider supporting me too. As well as helping to save me, you will also be helping to bring the kinder future of cancer care into the lives of countless other families devastated by this terrible disease.
Callum my 12 year old son, who has held my hand tightly on this unwanted ‘journey’, wisely said to me that what we need is for people to: “Please give a little for a lot of life!”
Thank you for taking the time to read my story, please consider donating (by clicking one of the many red donate buttons or by emailing me), as every penny counts. Remember too that no act of kindness is ever wasted. If nothing else, please share my story with as many friends/acquaintances as you can. Preferably, it would help more if you could convince them in personal conversations to visit my website to learn more and decide for themselves whether to make a donation. Alternatively, send friends/acquaintances texts and emails with this website address, which has been kindly developed by my great friend Jon:
Thank you so much and warmest wishes
To life! (In memory of scientist Tom Marsilje)
I became friendly, via his selfless cancer help blog, with Tom Marsilje, an American cancer drugs researcher and fantastic patient advocate, who was also a fellow stage IV bowel cancer patient. Tom took the trouble to educate me about the possibilities emerging from the fast developing area of immunotherapy. I will be forever in Tom’s debt and following his recent death wish to honour his memory and be part of his legacy. He stressed the need for me to get a new cancer tumour test done. This would reveal if I had a rare highly mutated cancer sub-type, classified as having Micro Satellite Instability: termed as MSI-High status. I hit the jackpot! My test showed that I did indeed have a rare highly mutated cancer sub-type. Tom then revealed that MSI-High cancers were responding really well in the latest trials to the immunotherapy treatments, in this case the drug pembrolizumab. The mutations could be used to good effect by the drug to reveal the cancer to my powerful immune system for attack. Early results were stunning the scientific community and the race was on to translate this to patient care. A race America is far ahead in, as they passed pembrolizumab through an accelerated approvals process. Tom always finished his blogs with “To life!” I will never forget my dear friend and the great amount of good he did for the world. I have a chance at life because of him.
My cancer story, and it is one of hope, is available for you to read on my ‘Message from Hayley’ web page. Please also see the resources we have put together for other families on the immunotherapy page.
My email is: email@example.com
N.B. Any funds raised will be subject to audit and will go directly to my treatment, or to immunotherapy research if I should not be able to continue.