Sunflower Sisters is pleased to announce that we have obtained permission from Gregory Pawelski, author and moderator of the Cancer Focus website, a forum for PhD's, to reprint his commentaries on ovarian cancer.
In his own words - "I was a spouse/caregiver to an ovarian cancer patient. I became intensely interested in cancer medicine by virtue of working through, enduring and surviving my wife's illness. My college education (I trained as a political economist) and experience helped me to gather knowledge by virtue of voluminous reading and hundreds of hours of past and ongoing personal communication with noted authorities and experts in the field. Although now retired, privately, I've been a cancer patient advocate...my point...is to educate patients and others..."
Here is a link to his wife's story http://www.cancerlynx.com/pawelski.html
Sunflower Sisters will post Greg's commentaries as and when they appear on his website. For past postings or registration go to: www.cancerfocus.org
17 Jan 2013
Survivorship/Caregiver Program
We have been contacted by a representative of the Canadian Cancer Society to help them publicize a course that they are offering nationally to survivors and caregivers called Living Well Beyond Cancer.
The program has been licenced to them by Stanford University and was originally developed to help patients with chronic illnesses. The new program has been tailored to meet the needs of post-treatment cancer survivors and caregivers, dealing with all aspects of everyday life.
It is an intimate learning/sharing environment limited to ten people per class and can be scheduled to accommodate the participants' availability.
For information and registration in your area, please call the Canadian Cancer Society:
1-888-939-3333
The program has been licenced to them by Stanford University and was originally developed to help patients with chronic illnesses. The new program has been tailored to meet the needs of post-treatment cancer survivors and caregivers, dealing with all aspects of everyday life.
It is an intimate learning/sharing environment limited to ten people per class and can be scheduled to accommodate the participants' availability.
For information and registration in your area, please call the Canadian Cancer Society:
1-888-939-3333
9 Jan 2013
Never Assume
Yesterday was checkup day and as usual, it was a long one. I sometimes take advantage of the wait by chatting with other "patient" patients.
This story started with me seeing a lady and her husband come out of an examining room ahead of an older woman whom they had accompanied. The younger woman plunked her purse and coat down on the chair beside me and to no one in particular said that she was completely confused. I asked her if I could help and she said she didn't know. I thought she was talking about her bearings - how to get to the right window for appointment bookings, where the blood lab is etc. She laughed a kind of not happy laugh and said she just didn't understand. Trying to pick up on her laughing, I said that I sincerely hoped that she never had to understand this place...to which she responded "it looks like we may have to". Oh my...
Then she repeated "I don't understand...I just don't understand". I looked at her. She started to mumble that she had no idea what they were doing at a cancer clinic. She said that her mother had been operated on recently resulting in the removal of a 14 pound tumour. They said they "got it all". So, what are we doing here?? The gyn/onc surgeon that they had just consulted told them that she thought that the mother's tumour was the result of ovarian cancer. "Not possible" they all said. "Mother had a hysterectomy ten years ago. How can she possibly have ovarian cancer with no ovaries?" The doctor told them that before this latest surgery, she still had ovaries.
The family was understandably reeling in shock and disbelief.
After hearing this I too was stunned and then finally said "I'm so sorry".
What could anyone say? Where did the fault lie when all those years ago incorrect assumptions were made? The patient is now 75 years old. How does she adjust to all of these new realities? What happens when she goes back to her original surgeon and asks the questions that should have been posed ten years earlier? Was it standard procedure at that time to leave the ovaries in a 65 year old woman? Should there have been heightened surveillance in view of her medical history?
This family's story represents a very sad lesson in reinforcing the importance of participating fully in all aspects of your healthcare and more importantly, in never assuming.
This story started with me seeing a lady and her husband come out of an examining room ahead of an older woman whom they had accompanied. The younger woman plunked her purse and coat down on the chair beside me and to no one in particular said that she was completely confused. I asked her if I could help and she said she didn't know. I thought she was talking about her bearings - how to get to the right window for appointment bookings, where the blood lab is etc. She laughed a kind of not happy laugh and said she just didn't understand. Trying to pick up on her laughing, I said that I sincerely hoped that she never had to understand this place...to which she responded "it looks like we may have to". Oh my...
Then she repeated "I don't understand...I just don't understand". I looked at her. She started to mumble that she had no idea what they were doing at a cancer clinic. She said that her mother had been operated on recently resulting in the removal of a 14 pound tumour. They said they "got it all". So, what are we doing here?? The gyn/onc surgeon that they had just consulted told them that she thought that the mother's tumour was the result of ovarian cancer. "Not possible" they all said. "Mother had a hysterectomy ten years ago. How can she possibly have ovarian cancer with no ovaries?" The doctor told them that before this latest surgery, she still had ovaries.
The family was understandably reeling in shock and disbelief.
After hearing this I too was stunned and then finally said "I'm so sorry".
What could anyone say? Where did the fault lie when all those years ago incorrect assumptions were made? The patient is now 75 years old. How does she adjust to all of these new realities? What happens when she goes back to her original surgeon and asks the questions that should have been posed ten years earlier? Was it standard procedure at that time to leave the ovaries in a 65 year old woman? Should there have been heightened surveillance in view of her medical history?
This family's story represents a very sad lesson in reinforcing the importance of participating fully in all aspects of your healthcare and more importantly, in never assuming.
12 Dec 2012
Happy Birthday 2012
Happy Birthday Two us! Yes, we're very proud to say that the SunflowerSisters website is two years old this month.
We've just finished a major re-vamp of the information contained within the tab Coping with Chemo as well as updated Hope & Healing. There's still lots to do so please bear with us - we're aware that certain information is dated. That's good news isn't it? No, it's not good news, it's great knowing that things have changed and improved so much in one short year. We're also adding new tabs so that critical information isn't overlooked...stay tuned!
Many thanks to our readers who have made suggestions and comments. Special thanks go to my dear friend aka "Happy Turtle" who has read, proof-read and made valuable contributions to our site.
So, how are we doing? We've had an audience of 6,300 readers from 34 countries of which 4,300 were unique visitors viewing 17,000 pages...on average, each visitor read 3-4 pages. While that doesn't quite compare with Facebook's stats - we're very pleased with the progress we're making in reaching you.
Many, many thanks to my real Sunflower Sister and mega-cybermaster Lisa, for all her hard work in producing, editing and reining in the author (moi!). And above all to you, my fellow journeyers, your families and friends - this is for you!
We've just finished a major re-vamp of the information contained within the tab Coping with Chemo as well as updated Hope & Healing. There's still lots to do so please bear with us - we're aware that certain information is dated. That's good news isn't it? No, it's not good news, it's great knowing that things have changed and improved so much in one short year. We're also adding new tabs so that critical information isn't overlooked...stay tuned!
Many thanks to our readers who have made suggestions and comments. Special thanks go to my dear friend aka "Happy Turtle" who has read, proof-read and made valuable contributions to our site.
So, how are we doing? We've had an audience of 6,300 readers from 34 countries of which 4,300 were unique visitors viewing 17,000 pages...on average, each visitor read 3-4 pages. While that doesn't quite compare with Facebook's stats - we're very pleased with the progress we're making in reaching you.
Many, many thanks to my real Sunflower Sister and mega-cybermaster Lisa, for all her hard work in producing, editing and reining in the author (moi!). And above all to you, my fellow journeyers, your families and friends - this is for you!
30 Nov 2012
Febrile Neutropenia
Some of you may recall that my hypersensitivity to front line drugs causes me to receive desensitisation infusions - i.e. very long, very slow chemo in hospital with one-to-one nursing. I am at high risk of adverse reactions and so they take extraordinary precautions.
I jokingly call these infusions my "spa chemos" - as they are a relaxing (just kidding) two-day event, meals served in bed, highly attentive nurses, mind-numbing drugs and no problems recovering afterwards - until recently - when my husband picked me up after my hospital stay and was suffering with what was obviously a very bad cold.
If a chemo patient can't remember anything else - they must remember the cardinal rule to take their temperature regularly. WHY? Elevated temperature is an indication of infection.
After three days of monitoring a low-grade fever, my temp hit 38.9C (102F) - I'd gotten the cold. It was a Sunday morning, so off we went to the hospital emergency room.
I jokingly call these infusions my "spa chemos" - as they are a relaxing (just kidding) two-day event, meals served in bed, highly attentive nurses, mind-numbing drugs and no problems recovering afterwards - until recently - when my husband picked me up after my hospital stay and was suffering with what was obviously a very bad cold.
If a chemo patient can't remember anything else - they must remember the cardinal rule to take their temperature regularly. WHY? Elevated temperature is an indication of infection.
The rule is 38.3C or 101.5F - get to the hospital!
In the ER, dear hubby was sent in one direction and me in another. He was diagnosed with bronchial pneumonia and given a prescription for antibiotics. I was told that I had a common cold/sinus infection, go home, continue monitoring my fever, take Tylenol, rest...antibiotics? No. We don't do that. Hmmmmmmmmmm. I made it clear to the doctor that it was day three after chemo...sure, all blood work was still within the normal range but I had a fever...no antibiotics?...nadir just days around the corner...husband with bronchial pneumonia...a recipe for disaster!
Nadir is the point at which your blood cells - red and white - reach their lowest levels as the chemo wrecks it's most savage attack. Translation - you have a severely compromised immune system with zero ability to fight infection.
At home, day 6 - nadir - my fever topped 40.2C - an alarming level even for a healthy person, let alone someone trying to recover from chemo. I was once again off to the hospital. But no, common sense or delirium must have prevailed, because I had the foresight to call the Cancer Clinic and alert them to the situation before once again leaving my life's decisions in the hands of a fresh-faced ER doc who doesn't "do" antibiotics. I was told by my oncology nurse to come to the Cancer Clinic immediately - do not pass GO - do NOT go to the ER.
My oncologist was waiting and shocked at my condition. I was immediately admitted to hospital. Diagnosis - febrile neutropenia - a fever of over 38.3C and neutrophil count of 500 or less. My white blood count was actually .1 at admission and my neutrophil count 300... barely registering. (normal ranges can be from 4-11 for WBC and 1,500-9,000 ANC)
Death by the common cold was exactly what I was facing. Antibiotic IV's were hung, mega doses of acetaminophen, bone marrow stimulants, pain meds, anti-blood clot shots to the tummy (ouch!) all bombarded me. I couldn't breath - was coughing out blood - had laryngitis - was literally looking over the edge and wondering if this was it?
Death by the common cold was exactly what I was facing. Antibiotic IV's were hung, mega doses of acetaminophen, bone marrow stimulants, pain meds, anti-blood clot shots to the tummy (ouch!) all bombarded me. I couldn't breath - was coughing out blood - had laryngitis - was literally looking over the edge and wondering if this was it?
Four days and four nights later I was discharged. Two courses of antibiotics later, all was well. But what an incredibly difficult series of lessons to be learnt. Yes, take your temperature frequently when you're undergoing chemotherapy. Yes, go the the ER with a fever if your cancer clinic isn't open. No, don't take "no antibiotics" for an answer. No, don't trust that when the ER personnel say that they'll notify your oncologist that they actually do.
Yes, understand that while undergoing chemotherapy treatment, you can actually die from the common cold.
Yes, understand that while undergoing chemotherapy treatment, you can actually die from the common cold.
12 Sept 2012
September 2012
September is the most important month in my personal calendar. It is a time for celebration marking both our 15th Wedding Anniversary and my 5th "Cancer-versary".
Celebration is indeed in order when you reflect on the "in sickness and in health" part of our wedding vows realising that 1/3 of our marriage has been spent with a sinister intruder - ovarian cancer - in our lives. We haven't waited for today to celebrate however, we've celebrated every breath as a victory, ever day a milestone. Every moment that we didn't have to talk or think about cancer has been a blessing. Every treatment, every checkup, every new development has been a mutual challenge in seeking acceptance and understanding - always and ever, the daily requirement for a new normal.
Ovarian cancer is not a "silent killer" - a phrase most often used in association with this disease - but one with sceamingly loud symptoms which are rarely taken seriously. Study after study says that increased screening does not lead to increased survival but take a step back and really listen to your body. Most of the Sunflower Sisters who I know personally, were very symptomatic before diagnosis and had gone through test after unrelated test until the disease was so advanced as to be irreversible. All of the Sunflower Sisters, who I know personally, have had children, live an active, healthy life and none are BRCA1/2 positive. All of these ladies confound "conventional wisdom".
As did I. Some of you know my story of detection - the clean ultrasound 5 weeks earlier - and then the "infamous" tennis shot which combined with doing the splits - caused what I thought was a hernia. Twelve days later, I underwent a 7 1/2 hour surgery to remove a 22cm malignant tumour. Thank heavens for tennis.
Today marks five years from that date - I have so much to be grateful for. There are so many people to be grateful to - an extremely loving, supportive family and network of friends, competent, caring doctors, nurses and as time goes on, the discovery of many, many unsung heroes.
Five years ago, I was told that I had 42% chance of 5 year survival. At the time, my husband said "You'll make it 43%"! He was right - I didn't though, we did!
Happy Anniversary, Darling!
Celebration is indeed in order when you reflect on the "in sickness and in health" part of our wedding vows realising that 1/3 of our marriage has been spent with a sinister intruder - ovarian cancer - in our lives. We haven't waited for today to celebrate however, we've celebrated every breath as a victory, ever day a milestone. Every moment that we didn't have to talk or think about cancer has been a blessing. Every treatment, every checkup, every new development has been a mutual challenge in seeking acceptance and understanding - always and ever, the daily requirement for a new normal.
Ovarian cancer is not a "silent killer" - a phrase most often used in association with this disease - but one with sceamingly loud symptoms which are rarely taken seriously. Study after study says that increased screening does not lead to increased survival but take a step back and really listen to your body. Most of the Sunflower Sisters who I know personally, were very symptomatic before diagnosis and had gone through test after unrelated test until the disease was so advanced as to be irreversible. All of the Sunflower Sisters, who I know personally, have had children, live an active, healthy life and none are BRCA1/2 positive. All of these ladies confound "conventional wisdom".
As did I. Some of you know my story of detection - the clean ultrasound 5 weeks earlier - and then the "infamous" tennis shot which combined with doing the splits - caused what I thought was a hernia. Twelve days later, I underwent a 7 1/2 hour surgery to remove a 22cm malignant tumour. Thank heavens for tennis.
Today marks five years from that date - I have so much to be grateful for. There are so many people to be grateful to - an extremely loving, supportive family and network of friends, competent, caring doctors, nurses and as time goes on, the discovery of many, many unsung heroes.
Five years ago, I was told that I had 42% chance of 5 year survival. At the time, my husband said "You'll make it 43%"! He was right - I didn't though, we did!
Happy Anniversary, Darling!
27 Aug 2012
Angels Are For Real
As a result of the extensive readership of our website, I have made friends and connections all over the world. In some cases, I've been able to put two followers together to help each other. However, in what I am about to relate, I needed help...what transpired was full of what could only be described as a series of incredible co-incidences and acts of human kindness.
The story begins this past Friday...upon arriving home from my latest chemo treatment, I received an email informing me that a Sunflower Sister, who has been in communication with me for months, had just been given devastating news of disease progression. 17 months ago she was diagnosed with advanced ovarian cancer, then recently breast cancer, and on Friday, her CT scan revealed multiple brain metastases. This sister (we'll call her Bella) is on a work contract in Ireland - single, no family or social network - and is now dying...alone in a strange country.
The news was sent to me by a teal sister from Georgia, USA. Shocked and heartbroken by Bella's circumstances, I immediately put out an SOS for help, advice, suggestions. Here is what happened:
A dear friend from Michigan, USA responded that she has a cousin in Ireland - she then phoned her. It turned out that her cousin knows of a 74 year old nun who spent her career in the hospice care field - this cousin contacted the nun who very happily said she will visit Bella. That same cousin then called her aunt, who is a retired palliative care nurse in the city where Bella is hospitalised - she too will visit.
My friend texted Bella directly, introduced herself and offered introductions to specialists in the oncology department at the University of Michigan who are open to distance consultations.
My brother-in-law is a doctor in Canada - born in Ireland - I called him about this tragedy - I was halfway through recounting the details when he interrupted me saying that he actually, personally, knows Bella's doctor! They are going to put their heads together to see what kind of support is available and initiate it immediately. Serendipitously, his best friend is a breast oncologist in Bella's town - he too, has agreed to call.
I then received an email from my sister-in-law who lives in England. She informed me that one of her very best friends (who lives in the south of France) has spent her life as a counsellor to the terminally ill - this friend has offered to Skype Bella.
The next day - Saturday - our family celebrated my father's 90th birthday by hosting a surprise party for him. Having had chemo the day before, I didn't know if I could attend (physically) and, given a totally compromised immune system, whether I should attend. The decision was easy though, I wouldn't have missed it for the world! I got a few sympathetic looks when I arrived. (I think) I looked awful - had really puffy eyes. What they couldn't possibly know was that the puffy eyes weren't from chemo but resulted from so many tears on Friday night - tears of joy - over the outpouring of love and compassion by complete strangers to "Bella" for "Bella" - and knowing now, that no matter what, because of their efforts, she will not die alone.
The story begins this past Friday...upon arriving home from my latest chemo treatment, I received an email informing me that a Sunflower Sister, who has been in communication with me for months, had just been given devastating news of disease progression. 17 months ago she was diagnosed with advanced ovarian cancer, then recently breast cancer, and on Friday, her CT scan revealed multiple brain metastases. This sister (we'll call her Bella) is on a work contract in Ireland - single, no family or social network - and is now dying...alone in a strange country.
The news was sent to me by a teal sister from Georgia, USA. Shocked and heartbroken by Bella's circumstances, I immediately put out an SOS for help, advice, suggestions. Here is what happened:
A dear friend from Michigan, USA responded that she has a cousin in Ireland - she then phoned her. It turned out that her cousin knows of a 74 year old nun who spent her career in the hospice care field - this cousin contacted the nun who very happily said she will visit Bella. That same cousin then called her aunt, who is a retired palliative care nurse in the city where Bella is hospitalised - she too will visit.
My friend texted Bella directly, introduced herself and offered introductions to specialists in the oncology department at the University of Michigan who are open to distance consultations.
My brother-in-law is a doctor in Canada - born in Ireland - I called him about this tragedy - I was halfway through recounting the details when he interrupted me saying that he actually, personally, knows Bella's doctor! They are going to put their heads together to see what kind of support is available and initiate it immediately. Serendipitously, his best friend is a breast oncologist in Bella's town - he too, has agreed to call.
I then received an email from my sister-in-law who lives in England. She informed me that one of her very best friends (who lives in the south of France) has spent her life as a counsellor to the terminally ill - this friend has offered to Skype Bella.
The next day - Saturday - our family celebrated my father's 90th birthday by hosting a surprise party for him. Having had chemo the day before, I didn't know if I could attend (physically) and, given a totally compromised immune system, whether I should attend. The decision was easy though, I wouldn't have missed it for the world! I got a few sympathetic looks when I arrived. (I think) I looked awful - had really puffy eyes. What they couldn't possibly know was that the puffy eyes weren't from chemo but resulted from so many tears on Friday night - tears of joy - over the outpouring of love and compassion by complete strangers to "Bella" for "Bella" - and knowing now, that no matter what, because of their efforts, she will not die alone.
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