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Ronny Allan
I started my “sometimes you gotta climb that hill” series/campaign some years so. I used it as a metaphor based on my own experience of actually climbing up hills. In the first couple of years after diagnosis, there was no way I could have done some of the physical stuff I can do now – having 3 surgeries and recovering from all 3 put paid to that. But in hindsight, I don’t believe I could have done some of these hills before I was diagnosed! To be bluntly honest with myself and you guys, I was too busy at work to keep myself in shape.
The “climbing hills” metaphor can also be applied to living with a diagnosis of cancer – there are many metaphorical hills to climb
One of the first hills to climb became apparent immediately after diagnosis. How would this affect me, my wife, my family, my work, my life? I kind of just dealt with it but there was an amount of ‘denial’ which made me doubt that this was going to change anything.
BUT …. some hills are false peaks
I climbed the ‘diagnostic hill’ only to find bigger hills beyond it.
The surgical hill
Having had 3 surgeries and some minor procedures in between, there is no doubt that these are fairly sizeable hills to climb and tough ones too. The biggest hill in this phase was my first surgery, major surgery which lasted 9 hours and resulted in 18 days in hospital for recuperation. I had an infection which made it a tougher climb. The second and third surgeries were smaller peaks but still challenging. You can read about my escapades by clicking here or on the picture below.
The emotional hill
I had to learn quickly with how to deal with living with cancer, I was still working. I know many people struggle with this. I didn’t outwardly show any signs of issues, but I was learning more and more as time went on, my employer was generous. The work did distract from some of the struggles. Despite some stability in terms of tumours, I was developing add-on problems via the cancer, both in incidental findings and side effects of the cancer and drugs had some effect, particularly dealing with a left hydrocele and a sub 2cm thyroid nodule. I’m fairly certain that some of my issues were also related to the long-term effects of malabsorption. In the middle of all this, I decided to retire early so I could concentrate on a bit more of life. I loved working but not if it was contributing to my issues, not if it was going to contribute to an earlier demise.
At this point, I was even thinking this disease would eventually kill me and perhaps sooner than I would like. Spoiler alert – I didn’t die! I’m much more confident today. I’m still here.
The surveillance hills
After 10 years of surveillance, from monthly in the early days, eventually stabilising at 6 monthly periods, I changed to 12 months. For me, the latter was a major sign of stability. By this stage I had a great deal of knowledge, a great relationship with my team, and I knew the signals. I had learned over the years that any abnormal signals in between these 12 months periods would result in ad hoc interventions to ensure continued stability or a reset. The latter doesn’t scare me, because I know it’s required to return to stability, e.g. it will keep me alive and enjoying life. Consequently, the ‘surveillance hill’ I climb each 12 months has effectively reduced in size, and I gently trot over it with little emotional pain. Read more about why surveillance is a positive by clicking here or on the picture below.
If I come across an unexpected hill, at least I’m fitter than I was at diagnosis. See you at the top!
Disclaimer
I am not a doctor or any form of medical professional, practitioner or counsellor. None of the information on my website, or linked to my website(s), or conveyed by me on any social media or presentation, should be interpreted as medical advice given or advised by me.
Neither should any post or comment made by a follower or member of my private group be assumed to be medical advice, even if that person is a healthcare professional.
Please also note that mention of a clinical service, trial/study or therapy does not constitute an endorsement of that service, trial/study or therapy by Ronny Allan, the information is provided for education and awareness purposes and/or related to Ronny Allan’s own patient experience. This element of the disclaimer includes any complementary medicine, non-prescription over the counter drugs and supplements such as vitamins and minerals.
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Hi Ronnie, you are very on point with this article, particularly as it comes to NETS. I am recovering from a second NETS surgery this last Tuesday to address a block caused by a tumor or mets in small intestine near stomach. This is on top of a 2019 big surgery at U of Iowa. Unfortunately post PRRT surveillance failed to identify the problem on my first post PRRT CT scan and I had multiple side effects from PRRT including ascites (3 paracentses to address) and episodes of really feeling unwell.
It has been addressed by a brilliant surgeon and I should be home in a few days. Timely reminder that the big hills caused by this disease are often unpredictable. The only good thing about it has been my opportunity to educate and inform people about my NET journey.
May you and Chris continue to climb your hills towards wellness.
many thanks, keep climbing those hills!
Glad to find your blog. You are an example of a fighter and this blog helped me find the answer to many questions that troubled me.
Keep up the good work.
many thanks
Life is always about continuous improvement Ronny, as you well know. I think your journey is a great demonstration of the effort and dedication needed to achieve it.
Thanks George, not one to feel sorry for myself!