Who? I’m a 55-year-old married mum of two, who works for the NHS and has been treated for cancer three times, two different cancers, since 2013. At first surgically, then with chemotherapy, stem cell transplants and immunotherapy. As a result, I have no abdominal muscles, appendix or belly button and parts of my bowel have gone awol. The extras are I now have cataracts, neuropathy, proprioception, hypothyroidism and scars that can make small children scream, soz Mimi. Please note, I didn’t say they were positives. To stand for any period of time I also have to wear an orthotic abdominal brace - like a corset but not remotely sexy, unless you have a thing for quick release metal buckles, spine support bars and setting off airport security.

Current status NED in scans but cancer marker is hanging in there at a mid level. Having finished chemo again in April 2022 I'm at the quiff of mid-1970’s Elvis but without the jumpsuits and sideburns. Looks like my waist length hair days are gone for good. Also, saddened that I can’t return to what, to me, will always be White Hart Lane as it would be too risky for my health. However, it is probably good for my well-being.

What? Walking, cycling and swimming to raise money and encouraging anyone else who wants to help to sponsor me, or even challenge themselves and help others, to join me.

Why do it? Because my main cancer is an extremely rare one, of a group of very rare ones - Epithelioid Trophoblastic Tumour of Gestational Trophoblastic Diseases. There is no approved defined treatment for it. All patients with rare cancers are in a catch 22 situation. There aren’t a lot of you, so it isn’t a focus for the development of new treatments, partially because you need a large number of patients to run full trials. However, the flickering light offered to us is that treatments approved for other cancers that share similar characteristics to ours can be used on us and, potentially, ultimately be approved for our cancer. But the NHS, under NICE (or not so nice from our perspective) guidelines, there are limitations to what they will fund. I ran out of options and H&T funded additional treatment for me. They do this is in the hope that this will generate data to support the treatments becoming approved for our rare cancers. If it becomes approved then you don’t run out of NHS funded treatments. 

The funds from this will go to benefit future cancer sufferers who have also run out of options. What H&T ask of their beneficiaries is they help fellow travellers on this dark path.

Why 68? Because that number keeps cropping up in my cancer journey, 68 miles between my home and my current cancer centre; 68 days in Oxford hospitals; 68 days in Hammersmith Hospital; 68 days in Charing Cross Hospital.

Why Pick & Mix? Some of my friends had joined join me in this but for personal reasons won’t do one of the activities – Lizzie is still traumatised by the trike accident of 1967, Susie’s skipping the swimming as she far prefers the hot tub but they’re really hard to do lengths in. If you want to pick your own challenge the only rule is there has to be 68 of it.

When? The walking I did between 22nd November and 8th December 2021. Cycling I had to practice a bit first. In 2019 I crashed my new lightweight bike (thank you James from Cycological in Deddington for spending so much finding the perfect one) because I forgot my physical issues in the excitement of being on a bike again.
Between December 4th and 20th 2021 I managed to rack up 17.3 miles but the combination of bad weather and bad news meant I didn’t manage anything further until September 2022 and finally completed, after a 2 week break for Covid & Flu, on November 20th 2022. Next I started the last leg, Swimming. I'm progressing as much as time, fatigue and pool access allows me to.

How? Will you know I’m not cheating? Aside from the fear of God instilled by nuns when I was small and my involvement in Scouts? Because each time I hit a target I will share some verification.

If you want more information these may help:

https://www.harrisandtrotter.co.uk/about/charitable-trust/

https://en.wikipedia.org/wiki/Gestational_trophoblastic_disease

If they don’t answer your questions you can contact me via Twitter or LinkedIn – I’m not on any other social media

Twitter @samanth39640113   LinkedIn Samantha Butterworth

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