Reflections on cancer medicine, life, photography and what comes next
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About Beyond the Big C
Background
Hello. I’m a 45 year old GP (family doctor/physician) and I live with my family in East Lothian, Scotland. Prior to that I had the privilege of working as a rural GP on the Isle of Arran for 9 years. That time contrasted with growing up in Edinburgh and training in Glasgow.
In May 2023 I was found to have a brain tumour, an astrocytoma. This news changed my life significantly and abruptly, including the need to stop work and driving. I went from having a busy, enjoyable career to significantly reduced independence in a short space of time, and it took a while to adapt to that.
I have been lucky to have experienced great care since then. I was prepared for, and underwent some very complex brain surgery in the middle of June 2023 to get as much of the tumour out as possible – both for biopsy (lab analysis) to work out what sort of tumour it is and what further treatment is required, and to reduce the effects of having a big lump in my brain. I feel very lucky to be benefiting from some extremely talented clinicians, teams and scientists whose skills make me feel hopeful and encouraged for what they can offer.
Shortly after surgery, it was confirmed I have a Grade 2 (‘low grade’) astrocytoma in my right temporal lobe. The surgical team got an impressive 85% of it out. After 6 months of ‘watchful waiting’ and surveillance MRI scans, there was some concern that the remaining 15% was showing some signs of growth, and so in March 2024 I commenced radiotherapy; after completing 6 weeks of that, I started chemotherapy (PCV). I remain hopeful that at some point in early 2025 that I will be able to return to some forms of work that I have had the privilege to enjoy so much until last year. In the meantime I continue to focus on family, function/rehab, and opportunities to keep my professional development up-to-date. We are aware that much will depend on my tumour ‘Gilbert, the glioma’ response to this treatment.
Why write about it?
I have kept a few blogs on other subjects over the last 15 years, and have always enjoyed the challenge of writing – along with the satisfaction of sharing that writing with others.
However, more recently I have been learning about Substack, this writing platform. It keeps being mentioned on the podcasts, news programs and other mainstream media that I listen to. I had a look, was impressed, and so here we are with me launching my story on Substack.
As a GP, I have looked after patients and their families with similarly serious diagnoses and uncertainties. I have found it to be a privilege to have the benefit of professional insight into my new situation. Being medically trained/experienced and receiving a new diagnosis can be challenging but my deeper insight has been mainly positive. Having an understanding of how to navigate NHS services and procedures has been very helpful. I have reflected much already (before and during my diagnosis) on the impact of health inequalities; I find myself wondering even moreso now, how others in different circumstances cope with the uncertainties and challenges that I have been faced with.
And so I am writing for several reasons:
I like the challenge of writing well (and my wife is an English teacher so I have great access to her critique and suggestions!). I hope that it might be helpful to stimulate some useful cognitive rehabilitation after surgery.
I am surrounded by good family, friends and colleagues who have shown me and my immediate family much kindness and support especially over the weeks after my tumour was found. Keeping in touch with everyone has been a balancing act; I don’t want to write too much on Facebook as I worry that my ‘tumour chat’ will be a less welcome interruption to other folks’ timelines; the topic will always cause potential upset, triggering of unpleasant memories or become boringly repetitive . So having a blog that folk can *choose* to dip into, if they wish, I hope is a better, kinder, less intrusive way of keeping in touch and sharing whatever news we wish to along this journey.
I have found reading about the experiences of others very helpful and reassuring at times. The Brain Tumour Charity runs some helpfully moderated Facebook groups, and I have already found a number of blogs – especially the www.eyeamconnor.com blog really helpful. I hope that my blog here might be helpful to others in the same way.
CONFIDENTIALITY
I subscribe heavily to the importance of patient confidentiality. It is a central tenet of good medical practice in the UK and internationally; and the trust that patients place in their doctors must be reciprocated by a respect for patients’ confidentiality. However I have made the decision to share my thoughts and experience including about my diagnosis, available publicly – partly as I believe this will enable more understanding, pragmatic support to my family no matter what state I end up in. I’m also keen to contribute to the bank of perspectives that I have found helpful to read myself, of other brain tumour patients, in case it helps them to ‘keep the heid’ (another Scottish term, meaning staying calm/informed!) too.
That said, I will always err on the side of caution in maintaining my family’s privacy (and please do what you can to support that as well
). I will also be careful to respect the views and privacy of any clinicians (and indeed any other patients) who I meet as part of my care. I know from experience the pros and cons of being a clinician involved with patients who choose to blog/journal their experiences, and so I will always keep a firm respect for the privacy, independence and expertise of those who I meet as a patient along my own patient journey.
Conversely, if you have been involved in my medical care, and want me to credit you for something I’ve mentioned, please just let me know! I’m very happy to give credit where credit is due, especially for good professionalism and care!
FEEDBACK
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