Community Connection: Ovarian Cancer Canada is looking for volunteers! Could you help?
OVdialogue – consider joining our team in the role of Peer Support Volunteer. Over a few hours each week, you would be part of a team that helps connect people, support conversations and are thought leaders for OVdialogue. This is your opportunity to give back to those who have/continue to support you through the tough times, share your unique experiences, and help celebrate successes. For more details of what this entails, please reach out to @Mfallis (mfallis@ovariancanada.org).
OVdialogue – consider joining our team in the role of Peer Support Volunteer. Over a few hours each week, you would be part of a team that helps connect people, support conversations and are thought leaders for OVdialogue. This is your opportunity to give back to those who have/continue to support you through the tough times, share your unique experiences, and help celebrate successes. For more details of what this entails, please reach out to @Mfallis (mfallis@ovariancanada.org).
Best Of
Re: TEAL THURSDAYS - Sign in and CLICK HERE TO ENTER LIVE DAYTIME ONLINE CHAT (1pm EST)
Hello fellow teal sisters. It's been a long time since I've posted on this site but have been swayed by our amazing moderator, @Strongwoman, to shed a little hope, especially for those just starting their ovarian cancer journey.
In February 2020 I experienced painful cramping in my abdomen. After being prescribed two rounds of antibiotics to clear up a suspected UTI to no avail I was put on a list, four months long, for a CT scan. I was given an ultrasound that confirmed a mass that was either a massive UTI or growths of unknown origin.
My family doctor did her best to facilitate specialist appointments but the earliest I could see a surgeon was four months into the future and a gynecologist, eleven months. Such is the state of our health care system.
I was encouraged to go to the Emergency Room of my local hospital with the Ultrasound findings. I was experiencing a lot of discomfort and fortunately followed their advice and went to Emerg. Thank heavens I fell into the hands of two wonderful internists who arranged for me to be seen by a gynecological oncologist within a very short time. After my appointment and CT scan, I was diagnosed with stage 3C Ovarian Cancer. It was the beginning of COVID lockdowns and they bluntly told me that surgery would not be on the table. Because of this, I sent my results to the Cleveland Clinic for a second opinion and a request for a cost breakdown of surgery if I had to have the tumors removed stateside. The number was mind blowing but my family was behind my decision to do whatever was deemed to be the best course of action regardless of cost. Fortunately for my finances, COVID lockdowns eased and I was operated on in July 2020 at Princess Margaret Hospital.
I have been NED for almost four years and feel so blessed and thankful for the amazing care I received at Princess Margaret, especially from my brilliant Oncologist.
In those four years, I've appreciated my family and friends more, improved my education, traveled, and learned to be more grateful for all the good around me.
This site has also helped me in so many ways. I'm impressed by the knowledge that my fellow teal sisters manage to glean but mostly by the strength and resilience that consistently shines through.
Big Hugs to all of you inspiring Ladies.
xo
Re: TEAL THURSDAYS - Sign in and CLICK HERE TO ENTER LIVE DAYTIME ONLINE CHAT (1pm EST)
Thank you @GloHo @jmbarrhaven @melissa @Taita @JoanEG
It has been a long day with a lot of info. I had a little cat nap and am reading a bit before I go into my sleep for the night. Thank you all for the support and kind words encouraging me along this journey. I will update anything I find out along the way.
Knowing this Med Onc had terrible reviews before going in, I had no expectations at all. I did my best to keep an open mind and see where the conversation went. I will say although he is a researcher, he is compassionate person and truly wants to help find a way to help us in finding solutions to living with this disease. I would like to say eradicate it but think that is a far stretch for any researcher out there to say. To know they truly care and want to help is all I need to have faith and trust. One of them will have a break through at some point in time and it will be a relief for women world wide. This disease is silent in many ways and we often find out way too late because of it. They will keep coming up with possible solutions and vetting them out and one day.....one day....they will succeed. Oh what a happy day that will be!
Now rest all your weary heads as I will rest mine. Tomorrow is a brand new day for us all.
💕🤗💕
It has been a long day with a lot of info. I had a little cat nap and am reading a bit before I go into my sleep for the night. Thank you all for the support and kind words encouraging me along this journey. I will update anything I find out along the way.
Knowing this Med Onc had terrible reviews before going in, I had no expectations at all. I did my best to keep an open mind and see where the conversation went. I will say although he is a researcher, he is compassionate person and truly wants to help find a way to help us in finding solutions to living with this disease. I would like to say eradicate it but think that is a far stretch for any researcher out there to say. To know they truly care and want to help is all I need to have faith and trust. One of them will have a break through at some point in time and it will be a relief for women world wide. This disease is silent in many ways and we often find out way too late because of it. They will keep coming up with possible solutions and vetting them out and one day.....one day....they will succeed. Oh what a happy day that will be!
Now rest all your weary heads as I will rest mine. Tomorrow is a brand new day for us all.
💕🤗💕
Welcome @Strongwoman as Moderator
Good afternoon everyone,
It is my pleasure to welcome @Strongwoman as OVdialogue Moderator. Over the last few months, @Strongwoman has been a wonderful presence within OVdialogue and has provided such support within our community. It seems a natural fit for her to step into this role as Moderator as she has been a Community Champion/Peer Support Volunteer for the last few years.
Thank you @Strongwoman for stepping into this role officially and for your continued support of this community.
It is my pleasure to welcome @Strongwoman as OVdialogue Moderator. Over the last few months, @Strongwoman has been a wonderful presence within OVdialogue and has provided such support within our community. It seems a natural fit for her to step into this role as Moderator as she has been a Community Champion/Peer Support Volunteer for the last few years.
Thank you @Strongwoman for stepping into this role officially and for your continued support of this community.
mfallis
6
Re: TEAL THURSDAYS - Sign in and CLICK HERE TO ENTER LIVE DAYTIME ONLINE CHAT (1pm EST)
@jmbarrhaven I want to personally thank you for letting us know and for being there for @mjmck21
I am saddened to hear about @mjmck21 and what this disease is doing to her currently. I want you to know @mjmck21that you have been a big part of this forum and all your input and advice has been welcomed and helpful to many. Please know that you have made a difference and contributed to enrich many lives. I wish you a peaceful ending and that you go as you would like to go. I am saddened to hear it has come to this stage and know there will be many hands to take when you get there who will show you the ropes and welcome you.
It is with a heavy heart that I say goodbye to you today and hope you are lucid enough to see or hear it. We may lose you but another star will shine bright in the night which will be you! Go in peace.
I am saddened to hear about @mjmck21 and what this disease is doing to her currently. I want you to know @mjmck21that you have been a big part of this forum and all your input and advice has been welcomed and helpful to many. Please know that you have made a difference and contributed to enrich many lives. I wish you a peaceful ending and that you go as you would like to go. I am saddened to hear it has come to this stage and know there will be many hands to take when you get there who will show you the ropes and welcome you.
It is with a heavy heart that I say goodbye to you today and hope you are lucid enough to see or hear it. We may lose you but another star will shine bright in the night which will be you! Go in peace.
Re: TEAL THURSDAYS - Sign in and CLICK HERE TO ENTER LIVE DAYTIME ONLINE CHAT (1pm EST)
Heard
from @mjmck21 this morning. She sent me
a text very late last night. She feels
she is hitting the end of the disease now with the bowel obstruction she posted
about several weeks ago. She does not
think she has much longer to live and plans on using MAID if the pain gets too
bad. She asked me to communicate to all
of you participating in this Thursday chat forum how grateful she is for the
support and comraderie she received from it.
It is one of the mixed blessings of this forum that as a collective of
mostly late stage ovarian cancer patients we get the joy of getting to know
each other followed by the heartache of losing new and valued friends.
Re: Years without recurrence
It took a long time for the 'cancer mindset' to ease for me. It occupied every minute of my day (and sleepless nights) when I was going through treatment. Then all of a sudden, I was on my own and separation anxiety creeps in. We are so used to appointments and treatments then BAM...nothing. I saw the oncologist quarterly for the first two years. Had bloodwork done, physical exam and symptom questionnaire. The next two years were every four months and the six month intervals until the end of year five, which is October 2021 for me. Bloodwork done every time, but not always a physical or symptom inquiry. I also had genetic testing done for breast, colon and ovarian cancers after I finished chemo. I was negative for each and that greatly reduced my cancer anxieties. My ovarian cancer was a fluke, apparently. BUT it just means I'm just not genetically predisposed, I could still get them.
I found a local support group which helped tremendously. The inception of OVDialogue connected me with ovarian cancer patients. It was, and continues to be, a game changer!
Re: Intro
@352Ruth
I recall last year a considerable amount of chat amongst the community on preparing for chemo...what to take, wear etc. Those may be hard to find since there's lots of posts on the general subject of chemo but if you go to the 'search' box on the upper right and type in key words like: chemo, prepare, what to bring, they might pull up the relevant discussions. Other than that I can offer a few tips:
Again good luck and continue to reach out as other questions arise. And don't worry too much. Most of us found it much easier than we expected and if there is any discomfort or issues the chemo staff are well trained to jump in an make things more comfortable for you. Just ensure you keep them informed on how you're feeling.
I recall last year a considerable amount of chat amongst the community on preparing for chemo...what to take, wear etc. Those may be hard to find since there's lots of posts on the general subject of chemo but if you go to the 'search' box on the upper right and type in key words like: chemo, prepare, what to bring, they might pull up the relevant discussions. Other than that I can offer a few tips:
- Be prepared for long days. Generally when you're administered two drugs, and accounting for the premeds and hydration they give you before and in between you can count on 4 or more hours. If you're only getting one drug in a treatment then usually an hour. Your doctor will tell you what drugs you'll get and the structure of your cycle so you can prepare for the amount of time you'll be in treatment
- Ask but generally yes you can eat while getting treatment. I used to pack a large bottle of spring water to stay hydrated (water at the hospital tastes awful), depending on what time my chemo something for lunch or snacks. Hate to admit it but there as always a Kit Kat in my bag. Don't pack anything that's strong smelling though. Others in treatment may find that offensive.
- Wear loose, comfortable clothing. Layering is good so you can adjust to the temperature in the chemo room. I usually wore track pants, a T, and a loose track suit top. The nurses are good to bring you a warm blanket if it's exceptionally cool.
- A good book to read, or notebook, or anything to pass the time.
- I usually feel just fine after treatment, but about half way home fatigue hits me. So I make sure my husband or someone is available to pick me up and drive me home.
Again good luck and continue to reach out as other questions arise. And don't worry too much. Most of us found it much easier than we expected and if there is any discomfort or issues the chemo staff are well trained to jump in an make things more comfortable for you. Just ensure you keep them informed on how you're feeling.
Re: Let's get started! Come and introduce yourself
Hi @Cormc
Welcome to the site and sorry to hear of your diagnosis. It is tough when we hear the news. I too was diagnosed with Stage 3C low grade serous in 2021. It was tough to take the news but am thankful they found it.
The experiences you are having have common threads to many. It is all a very tough road and it seems long at times. I found that having the half way marker helped a lot and I celebrated it silently once I got there. There is not much one can do about the weight gain and it is much better than being underweight and trying to navigate this. I finished chemo last August and just started back exercising more frequently in January at home and returned to the gym last week. It will be a slow and methodical regime to get back as exhaustion/fatigue does set in sometimes the next day or day after and then I listen to my body and rest.
Inability to sleep is a hard one and I would encourage you to speak to your team regarding that to see if there is something they can do to help you. The same goes for your anxiety, talk to your team and see what they suggest.
As each of us go through our own journey to rid ourselves of cancer, our bodies adjust accordingly. The body goes through a lot and we are left with reminders of the journeys we have taken. From a book I read recently, "After years of hard treatment, I have a body nothing like the one my mother made." I feel this is true for all of us as we go through and continue our journey. It is all in how we look at it, when we look at it as to what our thoughts are on this.
I, for one, am determined to get myself as strong as I can should a recurrence occur. I need to be strong again, whatever that means to my new surgically adjusted body.
Welcome to the site and sorry to hear of your diagnosis. It is tough when we hear the news. I too was diagnosed with Stage 3C low grade serous in 2021. It was tough to take the news but am thankful they found it.
The experiences you are having have common threads to many. It is all a very tough road and it seems long at times. I found that having the half way marker helped a lot and I celebrated it silently once I got there. There is not much one can do about the weight gain and it is much better than being underweight and trying to navigate this. I finished chemo last August and just started back exercising more frequently in January at home and returned to the gym last week. It will be a slow and methodical regime to get back as exhaustion/fatigue does set in sometimes the next day or day after and then I listen to my body and rest.
Inability to sleep is a hard one and I would encourage you to speak to your team regarding that to see if there is something they can do to help you. The same goes for your anxiety, talk to your team and see what they suggest.
As each of us go through our own journey to rid ourselves of cancer, our bodies adjust accordingly. The body goes through a lot and we are left with reminders of the journeys we have taken. From a book I read recently, "After years of hard treatment, I have a body nothing like the one my mother made." I feel this is true for all of us as we go through and continue our journey. It is all in how we look at it, when we look at it as to what our thoughts are on this.
I, for one, am determined to get myself as strong as I can should a recurrence occur. I need to be strong again, whatever that means to my new surgically adjusted body.
Re: Hair Growth
Hi @countryliving
I think anytime our hair is growing being after chemo or not, we go through a stage of it being annoying but we have to persevere and see where it goes.... why not try wearing scarfs for a bit while it is growing back.
I too lost all my hair during chemo. I had my chemo through winter so I was lucky to wear hats all the time. Now summer is here and my hair is growing back. Have been lucky that it is growing back slightly grey and fluffy n straight. I had stopped colouring it well before I was diagnosed and now even I think it looks good! Most have said they like it so I think Imwill keep it short for now.
Hang In There!
I think anytime our hair is growing being after chemo or not, we go through a stage of it being annoying but we have to persevere and see where it goes.... why not try wearing scarfs for a bit while it is growing back.
I too lost all my hair during chemo. I had my chemo through winter so I was lucky to wear hats all the time. Now summer is here and my hair is growing back. Have been lucky that it is growing back slightly grey and fluffy n straight. I had stopped colouring it well before I was diagnosed and now even I think it looks good! Most have said they like it so I think Imwill keep it short for now.
Hang In There!