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Ronny Allan
13 Christmas celebrations since diagnosis. A thankful statement
My Facebook memories today are full of Christmas day activities including my first Christmas after diagnosis and major surgery in 2010. I remember the whole of my own family attended, my son and daughter’s families and 3 grandsons (I now have 4 💜). The main thing I remember was falling asleep after the dinner and I suspect it was due to post-surgical fatigue plus ongoing issues with low haemoglobin and B12. I even considered that an influx of tryptophan from the meal might be involved 😏 My Facebook memory from today 13 years ago, involves the film Avatar, known for its special effects. It had a special effect in that I saw the first 30 minutes and the last 10 minutes 😊 It was that haemoglobin, B12 and tryptophan again.
For those at the beginning of their NET diagnosis and treatment, things can get better over time. Hang in there.
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One of my big sisters sadly passed away 2 weeks before Christmas 2023 and then I caught Covid-19 around 16th December. Life goes on and hoping for a better 2024.
I started doing the “Piss off cancer” series when I got to 65, mainly because I initially thought I wouldn’t make that age.
I was 54 years and 9 months old at diagnosis on 26th July 2010. For the first few months, I had no idea what the outcome would be. What I did know at the time, given the final staging, grading, and other damage that was accumulated via various tests, checks, and scans; is that my body had been slowly dying.
Without intervention I may not be here now to tell you this tale and who knows what would be listed on my death certificate. It’s amazing to think something that would eventually kill me without intervention, didn’t have a much grander announcement than the one presented to me in 2010 (or had I been paying more attention, in 2008 or 2009). I will never know if a much grander announcement would have happened because following my chance diagnosis, I was ‘patched up’ and thankful to still be here today.
The initial intervention was really in two stages:
1. A nurse who I saw at my local GP thought outside the box when I said I had lost a “wee bit of weight” and a blood test she ordered set off a sequence of events leading to a diagnosis of Stage 4 Grade 2 Neuroendocrine Cancer.
2. I was lucky to live smack bang in the middle of an area covered by an emerging NET centre of excellence led by one of the biggest NET experts in the UK who also happened to be a brilliant surgeon. Some people struggle to find and get this diagnostic and therapeutic luxury and I consider myself fortunate (and I now push for more access for all).
Despite my good fortune (and it’s very strange a person thinks a stage 4 cancer diagnosis is good fortune), back in 2010 I had no idea if this unexpected event meant I would “shuffle off this mortal coil” earlier than planned. And I still don’t know today – prognostic crystal balls are not an exact science. BUT. I’m no longer seeking an answer to that question because I want to plod on living my life, I have no wish to know precisely how and when. I guess when the time comes, I might get some form of announcement, perhaps grander than my reticent cancer diagnostic signals. I’ll cross that bridge when I get to it and in the meantime enjoy the journey leading to it. I remember my surgeon telling me he had given me at least a decade. I just felt my pulse 13 years later, it’s fine! I always try to be an overachiever!
I thought I was going to die. I didn’t
I came out earlier this year about some thoughts I had been having in the first few years after diagnosis. I honestly didn’t think I would be alive today to celebrate this birthday. I had no idea what to expect. I thought I was going to die but I didn’t!
I can do it!
I think I was really spurred on when I walked up Pen Y Fan in Wales, realising that I could still do this with a bit of effort and determination. It’s the highest hill in the southern half of UK. I’m a lot older since I was diagnosed and this sort of activity does get harder – I still do some of this but I just go slower!
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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.
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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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I do not know how you do it. Explain please. I too am stage 4 grade 2, diagnosed 2017, surgery January 2018, metastasized to liver February 2022. I have lost 60 lbs since February & have NO energy. I got up this morning & started cleaning my kitchen; an hour later here I am sitting with my feet up, just taken some honey (marijuana) in pain, shaking. How do you do it?!
nothing wrong with putting your feet up, just don’t do it all the time. I eat OK, I sleep OK and I don’t do the honey stuff. I keep active. Everyone is different though. Best wishes.
Thank you once again for submitting to the NET community your many informative articles—- I read them for reference to my own personal care and for assistance in navigating through my NET- based life. You are an inspiration to so many people plagued with the complications of understanding this disease. We cannot learn enough about NET!! The more we learn, the more patients will be able to make the best decisions for their health welfare.
I am currently being driven from the Atlanta area (home) to Tampa, Florida (8 hour drive, with lots of traffic!) by my husband to consult with a surgeon with the Moffitt Cancer Center regarding the strong possibility of having a liver debulking surgery.
My two Atlanta oncologists (neither of them are NET specialists- surprisingly, there are none in my area) disagree with Dr. Jonathan Strosberg, whom I consulted with in mid-November at his Moffitt office. They feel that this surgery could be very risky because of my original Whipple procedure, which was performed in June of 2016 with PNET/ Grade 2, well-differentiated tumors. Several therapies have been given to me (some of them successfully), but with only short durations of success… even PRRT lasted only 1 year before another therapy was discussed. I don’t yet have high numbers of tumors in my liver, but smaller tumors have merged together and are getting larger slowly. It is getting very ‘scary’ now, as I have been fortunate thus far in seeing incremental and periodic improvement. No one wishes to endure another surgery, but we need to make critical decisions now.
Once again, thank you for your well-written information that we ‘navigators’ need desperately! It wasn’t until late November 2019 that I even knew the NAME of my cancer—-thankfully, my ATL-area support group helped me learn and investigate the facts about this disease. I tell people about this ‘unknown’ cancer constantly so they may be informed themselves. I am so fortunate to have had excellent physicians and health care thus far. Plus, I have been blessed with recognition of my intelligence, cognitive abilities and teaching skills as a true gift from God that should be used for the good of others.
Wishing you a Happy and healthy 2023 to you & family- your wife looks so sweet in the photos!
Marlysa Raye-Jacobus (marlysaraye@comcast.net)
thanks for a wonderful message. I hope you had a peaceful Christmas and a happy and healthy 2023 to you too!
Congratulations on your 12th year anniversary. My husband would have celebrated too this mo. but he passed away 12/12/2022.😢
So sorry to hear Debbie, my sincere condolences 🙏
Hallelujah Ronny, So many have gone, but with your help & guidance( I know your not a Doctor!!) I am still here.
Glad you’re still here!!!