Towards Data Collection (via fungi)

On the same day that I am quoted in this great blog on the ICR website, an email lands in my inbox for a Pharmaceutical Industry Conference that focuses on “disruption”. Apparently “it’s imperative that pharmaceutical companies stay on track on their journeys towards becoming a truly data-driven industry.”I have been working on the fringes…

Am I a Yorkshireman?

I have trouble explaining my circumstances. I don’t want to jump in with hard words like “terminal” because it puts people in a difficult position. I don’t want to provoke pity, stoke grief, or cause pain. Terminal also isn’t true… I am no more on the edge of imminent death than you are.I have also…

Why are we waiting for Better Outcomes?

As part of my work on the Outcomes Based Pricing Initiative with CRUK and the GMHSC Partnership, I have participated in lots of conversations about the outcomes that are valued by patients. It will come as no surprise to other Patients/Advocates that the outcomes we discussed were always given to us by the people who…

Dipping a toe in the water…

I feel like I have lost a month! August flew by and I have started September with blisters and sores on my arse. How…?Towards the end of Lockdown (who knows what day/month it might have been), I decided that I would take on five adventures to celebrate my five years of living with incurable cancer.…

Scan Results in the time of COVID-19

A few weeks ago I got the results of my latest CT scan and the words used were “good” and “stable”. Obviously this was an immediately huge relief but I want to talk about some of the other, more complicated, feelings about my results and how they were delivered.The CT scan itself had to be…

Feeling Adventurous…

I enjoyed borrowing Bromptons so much that it felt like I might be grown up enough to finally have my own. A friend sent me a link to a gumtree advertisement and I jumped in, texting the seller, then calling the seller, and ultimately buying the bike… So now I have my very own Turkish…

If I Could Change One Thing…

If I could change only one thing about Healthcare, it would be to cut down the length of time it takes for patients like myself to work out how to get involved with the Establishment of Healthcare Provision… Patient involvement, engagement, and advocacy should not only be for those patients who have worked in healthcare…

A Little Update on the Bees…

As a result of all the swarming that happened in April (literally every day for a week), I have been waiting with baited breath to see whether my bees have functional nurseries again. Initially I forgot my dates and went in nearly a week early, panicking that the frames were featherlight with no brood anywhere…

Time for some Adventure…

In early February, at the beginning of this year, I celebrated my five year metastatic cancer diagnosis. I have been taking medication for cancer for seven years now and for five of those years I have known that my medication could not cure me.Given how peculiarly squiffy 2020 has gone, and how much time I…

Cycling The Demons Away

I cannot really explain why I get on so badly with bicycles. It has been an ambition of mine to cycle confidently since University, where I gathered up old Raleigh frames and tried to work out the mechanics of a decent bike build.I love the look of a woman on a bicycle. The concept of…