Did You Say “Chronic” Cancer? – & a Book on MPNs
Posted: Thu Nov 14, 2024 11:11 am
Morning all... 
Found this piece of news on the Patient Power (PP) mail-outs today...
I've long be toying with the idea of creating something of a similar scope myself.
One of the things we really don't ever hear much about, in my view... Is what it is really like to have to educate oneself, & learn how to navigate 'Life' with an MPN...
After my own diagnosis (Dx) in 2016, I instantly began immersing myself in all-things MPN related. Retrospectively, today I know that I had been previously existing for a great many years with my MPN, however I was completely unaware of why my path through life was full of seemingly unrelated occurrences that could be reasoned away by simply saying; "... I need to work less..." "...take better care of myself..." "...find a way to gain more sleep..." "...understand why my mind was often in some type of mental fugue...?"
To this day, I can still bashfully recall umpiring a cricket match in my mid 40s, & creating quite an obvious inappropriate 'Not Out' call... I was instantly dismissed from my duties on that day... Never really knew why any of that transpired, at the time...
After Dx and having somewhat learned about MPNs, I was always still trying to navigate the best way in which to survive & exist w/ my MPN. Never quite realising just how impactful having an MPN can be...
Hopefully this new 'Book' by Ruth Fein, might help many of us finally begin to truly understand what it really means to have to learn 'How to Live w/ an MPN?'
The book by Ruth is entitled:
"The Big C² – Stories from the Chronic Side of Cancer"
I for one will be obtaining a copy as soon as it becomes available...
Best wishes all...
Steve
MPN-MATE RF
Did You Say “Chronic” Cancer?
Sep 5, 2024. – By Ruth Fein
You’re sitting on the other side of a desk from a white coat. You anxiously awaited this meeting, a culmination of tests and more tests, maybe months or years of misdiagnoses. Then you hear it – the Big C diagnosis. But what you may not have heard is the little c before it: “You have a chronic cancer.” That’s the Big C2.
Excuse me? What does that even mean?
Some cancers become chronic because, while sometimes dangerously active, they go in and out of remission with short or sustained treatments, perpetuating cycles of starting and stopping therapy. This could last a year or decades. It could be the result of cancer returning in the same location or due to metastasis, starting in one location then spreading to another site or organ.
Some cancers are simply slow-growing (indolent), such as non-aggressive forms of prostate cancer, ovarian cancer, some breast and colon cancers. Among the slowest are carcinoid tumors, which often grow over decades in the gastrointestinal tract with minimal or no symptoms, sometimes spreading with time.
Then there are the classic chronic blood cancers: chronic myeloid leukemia (CML), chronic lymphocytic leukemia (CLL), multiple myeloma (MM), myelodysplastic syndromes (MDS), and the umbrella group of myeloproliferative neoplasms (MPNs) including polycythemia vera (PV), essential thrombocythemia (ET) and myelofibrosis (MF).
Blood cancer alphabet soup.
Whatever new or revived diagnosis you heard, if you are feverishly Googling before you leave the patient parking lot, already barreling down the third loop of an emotional rollercoaster, now is the time to pull the handbrake. The word “chronic” could be the most powerful and misunderstood word in your now daily life with a cancer.
For many cancers, research has given us a greater understanding of what causes the disease, how to slow it, treat it or even stop it from progressing altogether. The result is more people living with cancer as a chronic condition. But have our patient-centered questions caught up with our progress?
Many patients report they are living “well” with a chronic cancer. Are they being honest with themselves and their care teams?
Are they moving through daily life thinking they should only feel gratitude for being alive and not “complain” about symptoms or side effects that aren’t immediately life-threatening?
Are their ongoing physical and emotional challenges therefore not well documented or thoroughly discussed?
These complexities can leave people on the other side of the doctor’s desk without the resources they need to help manage the hefty hurdles that interfere with their quality of life.
Conversely, living with the right physical and mental health support for a perpetual cancer can come with some insanely empowering thoughts about how we live our lives and our legacies.
Editor’s Note: This essay has been adapted from Ruth Fein Revell's forthcoming book The Big C2: stories from the chronic side of cancer.
Go to https://www.rfrwrites.com, click the SUBSCRIBE button, and receive a link for book pre-orders when available from the publisher. This collection of essays and interviews to inform and inspire is expected on shelves and online in early November 2024.
© 2024 HealthCentral LLC. All rights reserved.
Found this piece of news on the Patient Power (PP) mail-outs today...
I've long be toying with the idea of creating something of a similar scope myself.
One of the things we really don't ever hear much about, in my view... Is what it is really like to have to educate oneself, & learn how to navigate 'Life' with an MPN...
After my own diagnosis (Dx) in 2016, I instantly began immersing myself in all-things MPN related. Retrospectively, today I know that I had been previously existing for a great many years with my MPN, however I was completely unaware of why my path through life was full of seemingly unrelated occurrences that could be reasoned away by simply saying; "... I need to work less..." "...take better care of myself..." "...find a way to gain more sleep..." "...understand why my mind was often in some type of mental fugue...?"
To this day, I can still bashfully recall umpiring a cricket match in my mid 40s, & creating quite an obvious inappropriate 'Not Out' call... I was instantly dismissed from my duties on that day... Never really knew why any of that transpired, at the time...
After Dx and having somewhat learned about MPNs, I was always still trying to navigate the best way in which to survive & exist w/ my MPN. Never quite realising just how impactful having an MPN can be...
Hopefully this new 'Book' by Ruth Fein, might help many of us finally begin to truly understand what it really means to have to learn 'How to Live w/ an MPN?'
The book by Ruth is entitled:
"The Big C² – Stories from the Chronic Side of Cancer"
I for one will be obtaining a copy as soon as it becomes available...
Best wishes all...
Steve
MPN-MATE RF
Did You Say “Chronic” Cancer?
Sep 5, 2024. – By Ruth Fein
You’re sitting on the other side of a desk from a white coat. You anxiously awaited this meeting, a culmination of tests and more tests, maybe months or years of misdiagnoses. Then you hear it – the Big C diagnosis. But what you may not have heard is the little c before it: “You have a chronic cancer.” That’s the Big C2.
Excuse me? What does that even mean?
Some cancers become chronic because, while sometimes dangerously active, they go in and out of remission with short or sustained treatments, perpetuating cycles of starting and stopping therapy. This could last a year or decades. It could be the result of cancer returning in the same location or due to metastasis, starting in one location then spreading to another site or organ.
Some cancers are simply slow-growing (indolent), such as non-aggressive forms of prostate cancer, ovarian cancer, some breast and colon cancers. Among the slowest are carcinoid tumors, which often grow over decades in the gastrointestinal tract with minimal or no symptoms, sometimes spreading with time.
Then there are the classic chronic blood cancers: chronic myeloid leukemia (CML), chronic lymphocytic leukemia (CLL), multiple myeloma (MM), myelodysplastic syndromes (MDS), and the umbrella group of myeloproliferative neoplasms (MPNs) including polycythemia vera (PV), essential thrombocythemia (ET) and myelofibrosis (MF).
Blood cancer alphabet soup.
Whatever new or revived diagnosis you heard, if you are feverishly Googling before you leave the patient parking lot, already barreling down the third loop of an emotional rollercoaster, now is the time to pull the handbrake. The word “chronic” could be the most powerful and misunderstood word in your now daily life with a cancer.
For many cancers, research has given us a greater understanding of what causes the disease, how to slow it, treat it or even stop it from progressing altogether. The result is more people living with cancer as a chronic condition. But have our patient-centered questions caught up with our progress?
Many patients report they are living “well” with a chronic cancer. Are they being honest with themselves and their care teams?
Are they moving through daily life thinking they should only feel gratitude for being alive and not “complain” about symptoms or side effects that aren’t immediately life-threatening?
Are their ongoing physical and emotional challenges therefore not well documented or thoroughly discussed?
These complexities can leave people on the other side of the doctor’s desk without the resources they need to help manage the hefty hurdles that interfere with their quality of life.
Conversely, living with the right physical and mental health support for a perpetual cancer can come with some insanely empowering thoughts about how we live our lives and our legacies.
Editor’s Note: This essay has been adapted from Ruth Fein Revell's forthcoming book The Big C2: stories from the chronic side of cancer.
Go to https://www.rfrwrites.com, click the SUBSCRIBE button, and receive a link for book pre-orders when available from the publisher. This collection of essays and interviews to inform and inspire is expected on shelves and online in early November 2024.
© 2024 HealthCentral LLC. All rights reserved.