Medical Data Access

While my medical records exist somewhere on a private system within the UK National Health Service, I want to extend access to the full set of my scan images, symptoms, treatment plan, etc. It may prove to be a wasted effort, but I’m curious about what can be done when the consultation and treatment process is opened up through online collaboration.

…and because medical tech is cool.

Links to Medical Info

  • BB-Medical_Notes (Google Doc) – Notes and a journal summarising my symptoms, diagnosis, prognosis, and personal information (eg. age, medical history, etc.)

  • Medical_Imaging (Google Drive folder) – The data from my body scans. Currently: CT (thorax, abdomen, pelvis) and MRI (pelvis), both made in mid-March, before treatment. Open the guidance notes (Medical_Imaging_Guide) in the top level of the folder, to help you navigate.


Written in Spring 2017.

My tumour is a T3, N1, M0 adenocarcinoma, discovered in late Feb 2017. I am undergoing combined radio- and chemotherapy: one session of radiotherapy every weekday (excluding public holidays) for 25 sessions. On the same days as the radiotherapy, I have a round of 1,800mg of Capecetabine after breakfast and again after dinner. My therapy is due to end on 19 May. Then, after allowing about five-six weeks for the therapy to have maximum effect while also giving me time to recover and get fit, I am expecting a total mesorectal excision around late June / early July. Subject to the biopsy of the removed tumour, I am then likely to have five months of further chemo, in a three-week cycle of two weeks on, one week off.

Update: May 2018.

I underwent the surgery as expected in July 2017. The surgeons were able to reattach my colon and give me a temporary ileostomy. The biopsy from the excised tumour showed that the tumour had responded extremely well to treatment, all that was left was a scar. But there was a very small amount of cancerous cells found on a nearby node. Therefore I was indeed given a second, longer round of chemotherapy as described above. This ended in February 2018 and I had my ileostomy removed in May.

A Look Inside

Video taken from the side view of the CT scan. I’m facing left. The big white blob on the left is my bladder, I think. And you can see my spine to the right. The tumour is in the middle, halfway through the video, shown in mid-grey. See the images below for clarity.

Frame #51 from CT side view, with distance measurements (56 x 39 mm)

Frame #51 from CT side view, with tumour highlighted