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 ([email protected]).

Let's get started! Come and introduce yourself



  • Hi I am newly diagnosed and recovering from surgery two weeks ago for serous cancer.  While there were no signs of spread I will start chemo soon with a combination of Ip and iv drugs.  I am very apprehensive but trying to be hopeful that I will be able to get through this.   My brain is still trying to catch up to what is happening. 
  • @LynneA - I remember experiencing the same feelings as you. My cancer wasn't diagnosed until the pathology after my hysterectomy. Up until the first infusion started, I still had difficulty believing I had cancer. Having preconceived notions about chemo didn't help. After the first infusion, I felt much more at ease. I had side effects - fatigue, sore legs, tingling in my feet, some nausea and constipation. Take whatever drugs your team recommends, they do so for a reason. Be sure you are well-hydrated before your chemo sessions and for the next few days to help flush your system. Above all - get rest! Listen to your body. We are stronger than we think, and you are too, but don't forget to listen to your body and give it what it needs.
  • Hi @LynneA
    I'm so sorry for your diagnosis.  Like kastoyles and for many of us it came as a big surprise and for the few while it's all just a flurry of activity and mess of emotions from denial to fear to total confusion...and probably more. So whatever you're going through emotionally right now it's all very normal and will pass with some time as you begin to settle into this journey you're now on and get to understand your disease better.

    I'm so glad you found our community though. We are close to 1000 strong across the country, newly diagnosed, in treatment, short term and long term survivors who all come and go on the platform as their own needs to information or support arise or to support others like yourself by sharing their own experiences or just being there to listen.

    I will first of all suggest to you to arm yourself with all the information you can on OVC.  With knowledge comes power and control, two of the things we most feel we've lost when first diagnosed. The best source I can recommend is the Ovarian Cancer Canada website where you will find all kinds of information our our disease, updates on research and new treatments, videos on multiple subjects from the emotional and psychological topic to practical things like nutrition and lots of survivor stories. The website is  And do order the booklet By Your Side. It's a very useful and comprehensive guide from diagnosis to completion of first line treatment that's became almost a bible on my desk at home. You can get it both hard and soft copy.  This is the URL ot order it:

    If you have questions for our group or want to research for information, you can use either the search button on the top right of your screen, key in a word or two related to the subject and a list of previous discussion threads and comments will pop up to click on and review. Or just start a new Discussion and the members who may have some information to share will comment.  You can also join our weekly Thursday live chats at 1pm EST any time. We usually have between 5 and 20 members on line together where we talk about anything and everything from our disease status, to celebrating good news, to the weather .  To join a live chat just sign in to OVdialogue and then click on the Discussion thread TEAL THURSDAY and you will enter into the chat.

    Finally, I don't have enough information to provide more guidance or suggestions other than to say it's always good news to hear that they believe they caught all visible cancer in surgery. Chemo is still standard of course regardless. But for anyone diagnosed in the past five years there have been so many amazing advances in treatment. For some the disease is curable depending on stage and type. For others, like me, who weren't diagnosed until late stage I have far exceeded expectations, now in my fifth year of treatment and still going strong.  Just remember, you are not alone....we are here for you whatever that might mean.

    Best wishes to you and please keep us posted on your progress.....

  • CountryLiving
    CountryLiving Peer Support Vol
    Hi @LynneA glad u came here to this wonderful group of ladies. Good to hear your cancer had not spread. Chemo is the next step. I too could not process all the info either at the time of diagnosis and like Kastoyles I was diagnosed with cancer after my surgical pathology. Do your best to heal now and get your strength before chemo. I too was very apprenhensive starting chemo but learned to have faith in my doctors. I am one year out from my chemo and I am clear of any cancer. Take care and rest. 
  • jiselle16
    jiselle16 Peer Support Vol
    @ShanaL Sorry to hear of your diagnosis, but glad you have found OVdialogue so we can help support you! Being diagnosed as a younger woman creates its own challenges - I was diagnosed at age 31 with stage 1C clear cell carcinoma. I am coming up to the 5 year anniversary of my diagnosis shortly with no reoccurrences. Catching OC in the early stages is immensely helpful in your prognosis. In regards to surgical menopause, it's a side effect from treatment that I'm not going to sugar's hard. But know that every woman is different in how they experience it. I had a total hysterectomy along with both ovaries removed almost 5 years ago and I have to say my hot flashes are not as strong as they were when I first entered surgical menopause. So things can and do get better. For me, the mental aspects (brain fog, mood swings, etc.) have been difficult at times, but as time as gone by I have learned to cope. Depending on what your doctor recommends, you might be able to take hormone replacement which will help with any menopause symptoms. If you have any specific questions about surgical menopause, feel free to message me or search the threads for past posts. We are hear for you <3
  • Thank you so much @jiselle16 ❤️
  • jiselle16
    jiselle16 Peer Support Vol
    @ShanaL I also thought I'd share this link too, it's a video about rare ovarian cancers (including mucinous) that was shown at last year's Ovarian Cancer Research Alliance (OCRA) conference in the US. While I usually like to get Canadian based info, I think the info is still mostly applicable.
  • pheteach20
    pheteach20 Legacy
    edited July 2021
    The post below was made by my wife about 5 days after she got a tentative diagnosis of ovarian cancer back in January. On February 11 in the wee hours of the morning, she woke me saying she was having trouble getting her breath…trouble breathing. I rushed to her side of the bed to realize that she wasn’t struggling to breathe but was breathing very slowly and very shallowly. I grabbed the phone and dialed 911. Even tho the ambulance was at the station near us and they got to us within 10 minutes…she slumped in my arms on our bed and drew what was to be her last breath. The EMTs worked nearly an hour to bring her back but she couldn’t breath on her own nor would her heart beat without the compressions. I stood over the three men holding an extra light  for them as they incubated her and tried to bring her back to me. Those minutes are etched in my mind. She’d only felt ill for about 7 was and had only had the results of a CT scan less than 3 was earlier. They deemed she died of a pulmonary embolism. I knew I could eventually lose her to ovarian cancer but I never dreamed that she was at death’s door…I don’t believe she did either. The last 4+ months have been a nightmare. To complicate our saga, I was diagnosed last July with colon cancer and after very successful surgery in August I began a chemo regimen of CAPOX September 29th only to collapse 10 days into the treatment because of not having the DPD enzyme needed to metabolize the capecitebine. I spent October in hospital after being resuscitated twice, returning home frail and using a walker. She’d nursed me for weeks and the day she told me she didn’t feel right was the day I’d put away the walker. I nursed us both for that next 7 wks. I know now that I survived to care for the love of my life her last 7 wks. We had almost 15 years together and had so many plans yet. I just wanted to post here so that those who reached out to her last January would no what became of her. She found comfort in your words of encouragement. Thank you for that. Hug your loved ones close tonight for Pat and I.
    Pat’s widow…Linda

    Hi. My name is Pat and I am 70 years old. I have been active and healthy my entire life. On December 26, 2020 I started feeling unwell. I lost my appetite, felt bloated, dry heaves, night sweats and some diarrhea. I went to get a COVID test on January 2 which came back negative on January 4. I phoned my family doctor to explain my symptoms and she said to assume I had COVID and had gotten a false negative test which she had experienced with other patients. I continued to feel very unwell and went for another COVID test on January 13 which also came back negative. On January 17 I called 911 to have the ambulance take me to the ER. After blood work, X-rays and CT scans the ER doctor came to tell me the diagnosis. Based on the abdominal/pelvis CT there is a large (13.7 x 10.6 x 9 cm) multiloculated complex cystic mass in the pelvis highly suspicious for malignancy. Probably of ovarian origin. There is diffuse complex free fluid throughout the peritoneal space and omentum suggesting malignant ascites and peritoneal/omental metastasis. This was a lot to take in and digest. The ER doctor did a CA-125 test and the number that came back on that is 273. The ER doctor said they would be referring me to our regional cancer centre. I was sent home. The next day I contacted my family doctor to get her in the loop and make sure I was indeed referred. She contacted the regional cancer centre and was told they needed a definitive diagnosis from a biopsy or fluid draw before I could get an appointment with them. She has put in an urgent request for both of those and forwarded the CA-125 results. It has been 4 weeks since this all began and it is very frustrating to be sitting anxiously awaiting to get these tests done. I feel like I’m a ticking time bomb. I am having difficulty eating but trying to get as much in as possible. I should also mention that my partner is already a patient with the regional cancer centre having had colon cancer surgery this past August. That surgery was very successful but the follow up chemotherapy was a disaster resulting in a 3 week hospital stay in October. Fortunately things have righted themselves. It was very scary. I am thankful to have found this group and be able to learn of other’s experiences and share mine. 
  • @pheteach20 - I am so sorry to hear about Pat's passing. My prayers are with you and your families.
  • @pheteach20


    Personally and on behalf of our membership may I extend our deepest sympathies for your loss.  I remember Pat having reached out earlier this year, her concerns about length of time to acquiring that referral so valid and so common to hear. I'm glad that whatever support we could provide was helpful to her at that time.

    The pulmonary embolism, a product of the cancer or something that would have occurred otherwise?  I expect no one will ever know for sure. But doing the work I do, and hearing what I hear every day,  I feel that these embolisms are far more common to our survivor community as possible underlying conditions to be aware or concerned about than is communicated to us as issues to be aware of.   

    That said, what a nightmare it's been for you. It's times like this that I wish I had something profound to offer other than to express my heartfelt sympathy to you and your families and to thank you for taking the time to let us all know of her outcome.

    As you begin to heal, may your loving memories of Pat and your life together help to ease your loss.

  • Thank you Kathi. There was no autopsy so no sure way to know. The coroner & the physician who'd been her attending both felt positive that she had a PE, but there was no real signs of impending danger when she was in hospital for 6 days having returned home 9 days before her passing. She was miserable from the ascites so I expect that was putting a strain on her system otherwise. I'm devastated but would never have wanted her to suffer through what the oncologist felt would've been her fate. How quickly she went down was unbelievable. My decline was much slower and steadier. I am so grateful for these groups. The group I belong to for my colon cancer has been a godsend. Y'all get it when the rest of the world doesn't have a clue. Thank you for what you do.
  • Hello Everyone,

    I was recently diagnosed with Serous Carcinoma (June 15th) and was quickly referred to Dr. Prefontaine at the London Cancer Clinic.  Chemo started three weeks ago at Stratford Hospital’s Chemo Clinic, beginning first with Paclitaxel which I did not tolerate well.  Treatment was stopped within seconds and I spent the next 5-6 hours recovering.  We continued with Carboplatin the following day, which I tolerated with no issues.

    I am currently waiting to hear if a bed is available at London’s Victoria Hospital for a desensitizing introduction of Taxol over 23 hours, along with my second Carboplatin treatment.  Alas a bed wasn’t available yesterday.  So I’m a little anxious with the uncertainty but have a strong desire to keep moving with my treatment.

    I have not asked Dr. Prefontaine about specifics of my cancer (CA 125 levels, grade or stage) because I’m not sure what this information would do for me other than create something else to worry and obsess about.  I would be very interested in learning from others what are the advantages and benefits of having this information.  Any input and recommendations would be greatly appreciated!

    After a very difficult period between last fall and May this year when my GP provided very limited medical support for my health concerns, my ‘case’ was finally picked up by an extremely caring Doctor Merotto in Stratford.  He took action quickly, scheduling CT scans, ultrasounds and blood work.  When he made a commitment to me, he kept it.  His communications and feedback were timely and thorough.  I am grateful for his professionalism.  I am also extremely thankful for the medical professionals and staff whom I have met in London and Stratford.  I have the utmost respect and trust in them.  They are the experts.

    Thank you for listening.

    - Wendy

  • Hi Wendy,  I was diagnosed with high grade serious cancer in Feb of 2019.  The chemk worked very well for me.   Same regime / drugs you are getting.  My CA125 was very high in the beginning and l was very lucky that it reduced substantially after the first dose.  I found that the drop was very good for me mentally.  I wish you a good result with your cancer plan.  Stay strong. Ask questions and fight ike a girl!

  • @NovaScotiaGirl Thanks for your insight & words of encouragement!  My focus is on keeping my vitality high.
  • Hi I was diagnosed in May with high serous as well.   Had surgery and have had 3 rounds of taxol by iv and carboplatin inter peritoneal.   Needed extra Benadryl and hydro cortisone to stop reacting to taxol.  I also started taking L Glutamine as it is supposed to help prevent neuropathy and CBD oil to help with leg pain from the taxol this last round.   Not sure if both helped but the pain was 50 percent less this time.  For me I like getting information but you need to do what is best for you.   You are the one who gets to make the decisions.   We are all in this together.   
  • Annie1950
    Annie1950 Peer Support Vol
    @WEMK I was diagnosed in March 2020 with 3c high grade serous ovarian cancer and went through eight round of carboplatin/paclitaxel with all the side effects and surgery to remove three tumors but now I have no evidence of disease and pray that it stays that way for a very long time.  I wish the same for you.

    Everyone is different but I wanted to be up to date on all matters, good or bad.  Like you, I had a difficult time getting diagnosed and proper treatment but  when it did, and in the right hands, all moved along very efficiently.  I'm not sure that would have been the case if I hadn't investigated and pushed somewhat.  I found it comforting to have a schedule of treatment and knowing what to expect.  I have noticed that it's easy to 'slip through the cracks' and I didn't want to be one of those unfortunate people.

    Good luck with your Taxol problem and all the best and welcome:) xo 

  • Thank you @LynneA and @Annie1950 for your postings.  Absolutely we need as much information about our circumstances, as we are all different.  I agree that it is too easy to 'slip between the cracks' and we need to be strong advocates for ourselves. Others can assist us, but we're pretty much in this alone.

    Good news!  Today there is a bed for me at London Victoria Hospital.  I'm optimistic that it will be a good day,  that my chemo treatments will start to settle down and that a routine will begin to develop.

    P.S.  I do know from Dr. Merotto and Dr. Prefontaine that my cancer, in addition to being serous, is SERIOUS.  For now that's all that's been needed to get my attention.  Perhaps one day I'll want to know the more detailed classification.

    Thank you for your words of encouragement!
  • @WEMK - Wendy, welcome to OVdialogue and our community of caring, sharing members, some of whom you've already heard from.  I'm glad you found us and hope you'll find value in connecting with a group, each of whom has walked in your shoes in some way.  I think most of us feel that knowing we're not alone in this journey we didn't ask for helps.

    Yes, I understand the desire "not to know" but truly your strength and resilience will come from being as equipped as possible with knowledge.  As NovaScotiagirl, Annie1950, and LynneA have said or implied, treatment differs by type and stage and, even then, we all respond differently.  So as the gals here share their stories, or offer suggestions and advice, knowing more about the status of your cancer and treatment plan allows you to compare apples to apples, so to speak.  And you will find much encouragement, despite being told your cancer is "serious".  There have been so many advances in treatments and research over the past five years, we are truly living longer and better lives even for those of us like me whose cancer is recurrent.  Five years ago when I was diagnosed with stage 3C high grade serous OVC, the type being one of the most common but also the most aggressive, my prognosis wasn't the best long term. But here I am today, one surgery, 6 rounds of chemo, one trial, and 8 more rounds of chemo later and I'm still going strong.  But yes, the ideal is to remain cancer free following first line treatment and there are many in our OVd group who can talk to being long term survivors, as much as 10 and 20 years +,  with no recurrence.  Just take each step at a time and trust in your cancer care team.  That said, arm yourself with information, get your questions answered to your satisfaction and always be prepared to advocate for yourself if there is something you feel you need or should have that is not being offered or considered.

    As someone newly diagnosed I can't recommend more highly the Ovarian Cancer Canada site as a primary source of information on our disease. The website houses a wealth of information and resources to draw upon and the OCC staff are enormously helpful if you need assistance in your information gathering.  Add to that highly suggest you get the booklet By Your Side.  It is a comprehensive guide to the journey from diagnosis through first line treatment.  You can order it both soft and hard copy...I have one of each at

    Finally, connecting with others with this disease does help conquer that feeling of being alone in this challenge.  This OVd site is available to you 24/7.  I also invite you to join in our regular weekly live chats where we discuss everything and anything.  Those sessions are every Thursday at 1pm EST.  Just sign in to OVd and then click on the Teal Thursday discussion topic to enter the chat. And since it's an online chat the discussion history is maintained and available for viewing after the fact. And OCC have recently added a monthly zoom session, called Teal Teas, where you can connect with others on that platform.  The schedule and to register to participate in a session can be found at

    So happy to hear they found a bed for you and hoping the desensitizing strategy worked.  I too had a serious reaction to Paclitaxel, so much so they didn't even want to attempt another try under any circumstances so Gemcitabine replaced it and my first line treatment consisted of it combine with IV Carboplatin.   So if your desensitizing doesn't produce the expected result there are other options still.   And it is wonderful to hear your confidence in your oncologist.  I, and others, share the frustration in having gone so long with no consideration for this disease as a possibility. It is the nature of this cancer unfortunately to be a last resort and not first resort consideration when our family physicians, most of whom have never seen an OVC case in their careers, are presented with symptoms.  

    Please keep us posted on how you're doing.  We are here for offer encouragement, share our stories, offer suggestions, and just lend a shoulder to lean on or an ear or listen if that's all you need.  In the meantime our thoughts are with you..... <3
  • Many thanks for your words of advice @Fearless

    I have discovered Ovarian Cancer Canada and have both the hard and soft copies of By Your Side.  Excellent resources along with this OVd web site.  And I'll consider joining the Thursday chat sessions as my schedule permits.

    Home today around noon after a very different and highly successful desensitizing protocol with the Taxol chemo, followed by the Carboplatin in hospital.  The only downside was the addition of many more meds before, during and after chemo to minimize any potential reaction to the Taxol.  So while I felt fine this morning, I'm starting to feel a little off this afternoon.  I understand that is part of the process.

    I will certainly continue to participate here as I continue to learn and have more questions.

    I value what you all have learned and your own personal experiences.  Thanks for being here for me and for sharing your stories and advice.

    Best wishes,

    - Wendy
  • Hello everyone, I hope you are all doing well. Brca1+ just turned 40, found a suspicious ultrasound, now mri showed either borderline mass or serous cancer and requires oncology. Have a meeting at Sunnybrook to discuss surgical options, and second opinion at PMH. Happy to connect with others.
  • Annie1950
    Annie1950 Peer Support Vol
    @Siga Good for you in reaching out to others who are walking the same path.  I'm sure the uncertainty of what's happening in your body is stressful to say the least.   I found the first part of the journey the most difficult and I think most people on this site would attest to that.  It seemed like a full time job getting blood tests, doctor's visits, starting chemo, delays in treatment and so on.  You've found a good sounding board.  Sending good vibes your way.   <3
  • @siga, like annie1950 said, so glad you found our group.  Part of getting through the emotional hurdles while you wait for diagnosis, and perhaps treatment, is just knowing you're not alone.  Our community here is almost 900 strong, all survivors of OVC...some very new, some long term and all engaged in sharing their stories, thoughts and lending an ear as you need support.

    As you begin your journey,  I encourage you to use the Ovarian Cancer Canada website as your primary source of information on ovarian cancer. You'll find it chock full of stories, videos, resources, and up to date information on research and the development of new treatments.  And do order their booklet By Your Side.  It is a wonderful guide for those newly diagnosed, taking you through the entire journey from diagnosis to end of first line treatment.  

    Please keep us posted and reach out when you have questions or feel the need to interact with others who've walked in your shoes. And if you're looking for "real-time" conversation please think about joining our weekly Teal Thursday live on line chats. We hold those at 1pm EST every Thursday and you need only log into OVdialogue and then click on the discussion topic Teal Thursday to enter the chat.  

    Best of thoughts will be with you as you meet with Sunnybrooke and PMH, both excellent cancer centers.  

  • Hi everyone. Thanks so much for sharing your stories. Last April abdominal pain took me to a Vancouver ER, scans showed ovarian masses, I was sent to St. Paul's, referred to BC Cancer Agency, had full hysterectomy three weeks ago. The cancer was classified as 1C. I'm scheduled for chemotherapy starting in a couple of weeks.

    I have a couple of specific questions for anyone who's reading: one, I'm still having quite a bit of occasional sharp pain after the surgery. It does seem digestion related (increases after eating, is relieved after gas). What's up with that?

    Second, I've seen a lot of references to treatment diaries, and blank ones to fill out. I've also read that after chemo, on a 21 day cycle, days 1 and 2 are okay, but days 3-6 can be pretty brutal. But what does that look like if you're on a day 1 and day 8 IV and port treatment? My treatment plan is Day 1: Pacilitaxel IV (4 hours) in the morning, and Carboplatin IP (3-4 hours) in the afternoon. Then on Day 8: Pacilitaxel IP (4 hours). I know a lot of the plan and calendar can change depending on my response to the drugs, test results, and so on. Still, I'd really like to get an idea of whether people who've had the same or similar drugs delivered on the same or similar cycle have found a rhythm and what that rhythm or pattern looked like?

    Thanks for your time reading and thinking! Take care.
  • Hi Daphne. 
      Welcome to the group.  I was diagnosed with Grade 3C after being hospitalized with a GI bleed.  I had no idea at the time that I had anything wrong so it came as quite the surprise. I underwent a radical hysterectomy and debulking surgery in March 2021. I started my chemo in April. You are correct there are some similar responses with chemo and after effects but everyone has their own journey.  With that being said I have been on the 21 day cycle with the same chemo drugs but don't have a Day 8 like you.  The first 2 were rough and the 2nd one was the worst for me.  I found talking to the doctor and letting her know what I was feeling and didn't want to feel help. We found changing the anti-nausea med helped and I also take steroids 12 hours and 6 hours prior to my chemo as well as Days 2 and 3 after chemo.  I am tired and rest when I need to for a few days afterwards. I returned to work in July and have been managing quite well.  I also started walking short distances with a family member even if I didn't feel up to it. I gradually get so I can walk on my own which I find helps. This has helped immensely. I am having my final chemo today.
    I think you will find this group both helpful and informative as well as supportive.
    The book "By My Side" does help along this journey.  I am not sure if any of this has helped but hope you find some tidbits from any one of us that may.  I wish you all the best in your recovery. 
  • @daphne I was Stage 1C as well - discovered after hysterectomy. Had six rounds of carbo/taxol. Yes, days one and two were fine and then the side effects began to kick in.  Be sure you are well hydrated before chemo and the next few days - it will help flush your system.  Day 3 I experienced mild nausea - take whatever meds they prescribe for you - they will help! Try to keep something in your stomach - eat smaller meals. Day four pains in my legs started - after the first round I started to take Tylenol the night before. They lasted for a few days and were less intense each day. I cannot stress enough that your body will need rest - especially right after treatment. With each subsequent treatment the fatigue will increase, listen to your body. I also found that I got constipated - I routinely started to take Sennokot the night before infusion and then twice a day for the next four days.
    I made it through and you will too! Check in with the gals here and let us know how you are doing!  Everybody's experience is slightly different but if you are able to pick up a few tips here on how to manage your side effects - awesome!  Most important - talk to your cancer care team if there is anything you aren't sure of.
  • I also found that ginger gravel, peppermint tea and a good probiotic worked best for me.  I didn't find the breakthrough drugs worked very well
  • @daphne Welcome to OVdialogue and our community. So sorry, as we always are, to hear of your diagnosis but also so glad to hear you are one of the lucky to have caught it at early stage. The vast majority don't get diagnosed until the cancer is considered advanced and hence the awful statistics that haunt us through treatment.

    It's already been suggested to you but I do want to reinforce using Ovarian Cancer Canada as a primary source of information on OVC.  You'll find the site full of videos, stories, updates on research and treatments, and support resources...all of which have been vetted for accuracy by their medical consultants.  And as also mentioned do order the booklet By Your Side. It is a wonderful guide to help you through diagnosis all the way to completion of front-line treatment. I keep both electronic and hard copies of it and it's successor guide Still By Your Side designed for those in recurrence as handy reference tools on my desk at home.

    As for your ongoing discomfort following surgery this is not unusual but needs to be assessed by your medical team. It could be as simple as the healing process, or some adhesions/scar tissue that might need to be addressed or something else.  What I can't stress enough to you as you go through your treatment is  open and clear and timely communication with your cancer care team. They are there not only to treat your cancer but to try to ensure the easiest and most comfortable process for you. Understanding how you're feeling, the questions you have, the concerns or issues that might arise only serves to help them support you more effectively.  So raise issues like your discomfort as quickly as possible, and then educate yourself in order to prepare for your consultations.  

    As far as this group goes we are national and roughly 800 strong and we all seem to agree how powerful it is to know we're not alone in our journeys.  The sharing of stories, and especially tips and tools to help manage through and post treatment is especially helpful.  

    Your question about chemo treatment is a good one. I think you'll find many, if not most of us, will agree that you will fall into a routine each cycle.  For me, very similar to what you are expecting.  Day 1 in treatment and Day 2 post generally full of energy and then any side effects Day 3 and 4.  For me most effects gone or receding by Day 5.  That said, the effects of treatment are not necessarily brutal.  We all respond in our own way to treatment, often based on your physical condition going into it, our emotional fortitude and threshold for pain and discomfort.  Personally, I sailed through chemo the first time with little to no effects that were more debilitating than mild queasiness and some mild constipation both of which were easily managed with over the counter solutions.  Fatigue and some neuropathy in my lower leg and feet were my biggest enemies, and those eventually disappeared sometime post treatment as I went into the recovery phase.  So I can only say hope for the best but read and ask questions and prepare for the worst. Hopefully you'll be pleasantly surprised.

    Finally, as I said before, you are one of the very lucky to have been diagnosed in the early stage of the disease. Hopefully this treatment plan will leave you NED (no evidence of disease) like so many of our survivors of 5, 10 and some I know of over 30 years. That said, you have also been diagnosed at one of the best periods in the treatment of this disease. Every day we are hearing of new research, new drugs, new treatment protocols that allow so many of us to live longer and better lives.  I was at stage 3C when diagnosed...and that was five years ago.  And while my cancer is recurrent and not curable, I have surpassed the statistics and am still going are many of our Teal Sisters.

    Please do keep us posted on your progress and reach out with any questions or needs you may have. We are all here for support, encourage, celebrate the successes, and be that quiet shoulder to lean on when you need that too.  

  • Thank you! I especially appreciate the signs of control and assertiveness I see in the comments above: it's so easy to feel overwhelmed instead of engaged right now while I'm waiting for chemo. I started handstitching work on a new textile artwork project today so mentally I feel a bit better.

    I have downloaded the guide. I'll refer to it frequently, I'm sure, but I'm also sure that it won't be a substitute for the understanding and generosity of those people here!
  • Activities to pass the time are great while waiting and in between treatments when you feel up to it.  I did clay painting and the place sent me home with paints which was awesome. I knit, read and Netflixed some days. Naps are great too.  Anything that helps with your mindset is great.  Reach out if you are having bad days for support and celebrate the good days too.
    I wish you all the best in your journey.
  • jiselle16
    jiselle16 Peer Support Vol
    @pheteach20 So sorry to hear about Pat's passing. Sending you healing thoughts <3