Cancer isn’t always a one-time event. It can be a chronic (ongoing) illness, much like diabetes or heart disease. Cancer can be closely watched and treated, but sometimes it never completely goes away. The cancer may be ‘controlled‘ with treatment, meaning it might seem to go away or stay the same, and it doesn’t grow or spread as long as you are getting appropriate treatment. Sometimes the treatment shrinks the cancer, but the cancer is still there – it doesn’t go away and stay away – it’s not cured. More people are living with cancer than ever before and the ratio is on the increase thanks to better treatments.
For the first 18 months following my diagnosis, I underwent a significant number of treatments and tests. As I continue living with my cancer, that tempo doesn’t seem to have gone away. Every 6 months (and sometimes in between too) I undergo a plethora of tests and appointments. Some tests are annual. I feel I’m stuck in this perpetual surveillance world – sometimes I’m not sure what to expect or what’s going to happen next! I suspect this is the case for many Neuroendocrine Cancer patients.
I saw a post on one of the forums last week – the question was “what does stable actually mean”. The answer may seem obvious but one reputable website defines it as follows “A doctor may use the term controlled if tests or scans show that the cancer is not changing over time. Another way of defining control would be calling the disease stable“. Worth noting that “not changing” can also mean ‘not decreasing’.
It’s 2 months until my next Multidisciplinary Team (MDT) and if I was a betting man, I would guess they will say “stable” having confirmed no remnant tumour growth and my blood and urine tests will be “unremarkable” (don’t you just love those medical terms!).
So is this normal? I guess it could be for me but I like to tie quality of life into my ‘normal’ definition. I also think that living with an incurable cancer is not so much about “getting back to normal” but rather what’s normal for me now (i.e. I can’t put back bits of my small intestine back in!). As I’m tying this into quality of life which is something I’m constantly trying to improve, I must therefore be constantly trying to improve my ‘normal’. I guess for me, normal isn’t really a static thing.
Being stable and finding a new normal doesn’t mean you don’t need support. The surveillance scans and tests are a given but the support isn’t always there in the quantity and quality you might like. I may be stable but I still need support and often this can only be acquired by being a proactive patient. I have a number of ongoing issue which might present bumps on the road ahead (at least the ones I can see) and these present a challenge to my normality.
- Thyroid lesion (ongoing). Although it has not grown since discovered. Watch and wait. Check out my Thyroid blog for the full story.
- I’m on long-term blood thinners (Clexane) due to the discovery of blood clots in one of my lungs following major surgery in 2010. To keep an eye on the risk of developing osteoporosis arising from long-term use of this drug, I have an annual DEXA scan which measures bone density. My last scan indicated a slight reduction (nothing drastic). I’m not getting any younger, so my bones are starting to ‘moan’ a little.
- I’m not syndromic but I do have some post surgical side effects. Anyone who’s had classic NET gastrointestinal or pancreatic surgery will know the issues. It’s a constant battle but I’ve made some improvements by understanding why these side effects occur and taking action to reduce their impact. For example, since my ‘turning point’ in 2014, I’ve managed to reduce bathroom visits by 300%, so things are pretty normal frequency wise. I continue to work on this. Small intestinal bacterial overgrowth (SIBO) is something I’d like to explore with my MDT, particularly as a big increase in my probiotics dose made a difference. Check out my Nutrition series of blogs.
- My fatigue levels are vastly improved since my 2014 turnaround and I put this down to my turnaround changes in the last two years including keeping active and reducing stress levels. I continue to work on this too.
A new normal can be found. They can be improved. However, they need to be guarded by being proactive and positive. And …. it’s not the same for everyone.
Thanks for listening.
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My Diagnosis and Treatment History
8 thoughts on “Chasing normality”
Hi Ronny, thank you for your thoughtful, well researched blog. Almost a year after diagnosis my life has changed more than I could have ever thought. I recently became officially ‘stable’ with all the implications and more that you touch upon in this and other posts. I am accepting my New Normal. I don’t look back so much. I encourage all to enjoy today the best that you can. Plan 6-12 months ahead with every 1st a new month appears and keep sailing into the horizon. I am still trying to figure out a good response to “But you look so great”. As though there is some disbelief in this NET diagnosis that no one has ever heard of anyway. Mostly I smile, say ‘Thank You and so do you!’ . Keep up the good work and keep enjoying this living with cancer life. Susan
That “oh you look so well, or “you’re so thin and pretty you look like a model” seems to be the new refrain. Yes I have lost 30 lbs. but it’s a hell of a way to diet. Was diagnosed in November 2011 with NETS in the liver with primary tumor on ileum. Primary removed in 2012 followed by two rounds of radiation “beads” placed in the liver followed by liver debulking 4 months ago. Call me strange but I’m the type of gal that likes to plan ahead and know what I am facing. I’m also a positive person so I hope you don’t feel I’m morbid but don’t you wonder what your eventual death will look like? What does liver failure look like in reality?
Deon, I don’t do death and I’m planning to live a normal life and die of something else! Look out for my next blog (or the one after) ☺
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Well written, Ronny!
I have two blogs on similar lines.
Sometimes, stable is normal. Sometimes it feels like there is no normal.