Let's get started! Come and introduce yourself

Bluebird

Welcome @jazzyjamie..sorry that you have the cancer but you've come to the right site...lots of support..and help from this group....can chat as much as you want and share or just listen..its all good...and it's great you're doing well...glad you joined.

Fearless

Hi @jazzyjamie Welcome to OVdialogue. We're happy to have you with us.  This is a great community of women, from across Canada...all here for support, information, and to share their own experiences with us.  If you're also new to Ovarian Cancer Canada itself, I encourage you to explore the website ovariancanada.org.  Lots of information and resources available.  I too am HGSC 3C. Diagnosed in early 2017.  Surgery, chemo and then clear for about a year and a half when I recurred. That was caught very early  and I put on a clinical trial of Olaparib , a PARP inhibitor, rather than chemo and have been on it, stabilized for almost two years now.  But also lots of us....3 of my own friends in our local survivor group...whose are still clear and approaching the five year mark...and two who have been clear of cancer for close to 20 years now.  Our stories are all different, but each one brings great comfort and hope.  Please use this site  and I encourage you to join us on our live chats...Tuesdays at 7pm CT  and Thursdays at 1pm ET.  Just sign in and  click on those discussion titles to enter the discussion.  Good luck with your recovery and we're here for you, and glad you want to be here for us too.  

kastoyles

@jazzyjamie - you are absolutely right! This is a wonderful place to chat with others with ovarian cancer. Glad you found us.

Flowergirl

Welcome @jazzyjamie - thank you for being here and we hope you are doing well. 

mazzg

Hi my name is Grace and I was diagnosed with ovarian cysts in July, 2020.  I went in for an ultrasound to check on my digestive system and they found ovarian cysts instead.  I'm not sure how long I suffered the vague symptoms of ovarian cancer, but I'm pretty sure it was for about a year.  I took anti-inflammatories, ant-acids, gas-x, everything to try to relieve these pesky gastric inconveniences, but, as the pelvic pain became unbearable, I went to see a gynaecologist, thinking it was the beginning of menopause.  I was 50, so it seemed logical.  She told me it was endometriosis, sent me for an ultrasound and put me on a Progestin...no blood test or other tests to confirm this diagnosis.  The ultrasound was clear - no endometriosis, but, since this medication relieved all of my pain, I just kept taking them...for 4 years!  I tried getting an appointment with this gynaecologist during the years to discuss stopping this drug, but to no avail.  She was actually a specialist in maternity, not menopause! So, for about a year I was living with bloating, urgent urination, abdominal pains, pelvic pains, lack of appetite, migraine headaches, etc.  I finally found a doctor who sent me for another ultrasound and that's when they found the cysts in the ovaries.  After a CT scan and PET scan it was determined that there was no cancer, but the ovaries had to be removed due to the size of the cysts.  I was told that a biopsy would be performed during the surgery and, if cancer was found, my uterus would also be removed.  So, as most of us, I went into an operation scheduled for 2 hours, not really knowing what was going to happen.  I woke up 10 hours later!  I had cancer in my ovaries, uterus, 2 lymph nodes & the omentum, plus pre-cancerous cells in my abdomen.  I am 2 weeks into my recovery from this debulking and it is not going well.  I am in pain all the time - these shooting zaps from my sides, quivering muscles, aches in the vagina, etc.  I ended up in emergency one week into my recovery due to the unbearable pain in my side, shooting out through my vagina.  They gave me anti-inflammatories and these worked, sort of, but the pain returned - one day on, one day off.  I'm now waiting for an appointment with the gynaecological oncologist to discuss & start chemotherapy.  To say I'm afraid would be an understatement. My other complications are that I have bipolar disorder & am prone to depression,  I live in Quebec with my husband,  but my entire family is in Toronto, so I have the support of my husband, but none from my sisters, nieces & cousins, who are all women. I sure feel alone out here in Sherbrooke.   I've joined this group to listen to others' stories of living with ovarian cancer and to learn as much as I can about this disease. I feel like it is a life sentence because of the stats on survival rates. But I hope that this group will give me hope. Thanks for reading! 

Bluebird

Welcome @mazzg.  Sorry that you had to go through all of that to find out that you have cancer..this is a great place of support.  Everyone here has gone through their own journey just like you are going through yours.  I was diagnosed because I went to the emergency with vague bloating symptoms to then being diagnosed with stage 3 metastatic ovarian cancer...it is a hard pill to swallow the diagnosis and statistics, but there is lots of different treatment and support to help you through this.  And we are all different and respond to treatment differently, so there is a wealth of info between all of us.  Use us and your oncology team..hopefully someone  from Quebec can direct you with more support there.

kastoyles

@mazzg - so glad you have found OVDialogue! Your story is not uncommon-many of us live with symptoms of ovarian cancer and for some reason the doctors don't think to rule it out early during investigation. I too had bloating, various pains and my doctor initially attributed it to a flareup of my IBS - and because of work pressures, I agreed. Initially. But the symptoms were different and my doctor, thankfully, sent me for tests and discovered the mass on my ovary. Pathology after my hysterectomy showed Stage 1 Clear Cell Ovarian Cancer.

I went through chemo and know exactly what you mean about being terrified. Up until the moment the infusion started, I wasn't sure I could go through with it. But I did, and it wasn't as bad as I thought it would be. Yes, I lost my hair, had aches and pains, fatigue and some nausea, but I took the prescribed drugs and they helped tremendously. Listen to your body, give it the rest it needs to heal. Read through the other posts on the site on what other Teal Sisters have experienced.

Don't be afraid to come here and vent or share a good news story or ask questions. We have open chats on Tuesday nights and on Thursday afternoons that might interest you. We have members of all ages and different stages of treatment and recovery. I finished my chemo four years ago and know that there is life beyond diagnosis. We all find out that we are stronger than we thought we were, you'll find out too. 

mazzg

Thank you both so much!

Bluebird

your welcome @mazzg..we are truly all of us in this together..ask as much as you want, share as much..we are here.  Maybe ask @MarilynOCC Moderator..she might have some local support information that can help you connect close to you as well.

mazzg

Thanks Bluebird! I have looked into support in English in Sherbrooke and have come up empty.  It is a french city and the english resources available are limited, if non-existent.  It's difficult for me to ask any questions of the group right now because I have yet to hear from the gynaecological oncologist that will be following my case.  I don't know what type of cancer it is, what stage it is (2 or 3), how far it has spread, what treatment options are available, etc.  It's infuriating! And now that Covid is spreading like wildfire in Quebec, I wonder how much care I will actually get. When I do get a full account of what is going to happen, I'm sure I will have many questions that the group chats can answer.  Thanks again...it's nice to connect with women who understand.  I think my family of women is in denial...or distance keeps their true feelings in check. All they tell me is that it will be o.k.  That is also infuriating! 

Fearless

@mazzg Along with Bluebird and kastoyles, let me welcome you to the OVdialogue community. I'm so glad you found us. Promise we'll be here for you through out your journey, for whatever support you need....a shoulder to cry on, information, resources, and hopefully some good giggles along the way.  Like you, when diagnosed I was pretty well on my own with just my husband's loving care.  Our son is thousands of miles away and my family and friends are a good 4 hours from me in either direction having retired out in the country.  Having a community of like minded gals to connect with , even if only electronically has been a blessing.

I am sure we'll chat more but a couple of things I'd like you think about. First of all, if you haven't already, order the booklet 'By Your Side" from Ovarian Cancer Canada. It's an exceptionally useful resource to guide you through your diagnosis and first line treatment; especially helpful in preparing for meetings with your medical team.  https://ovariancanada.org/living-with-ovarian-cancer/support-resources

The Ovarian Cancer Canada website also has a series of videos https://ovariancanada.org/Living-with-Ovarian-Cancer/Webinar-Series you'll might find useful. I especially found great strength from the latest one, The Power and Practice of Hope.

We also have live online chats I'd suggest you might want to join. Not a lot of us each week so lots of time to ask questions and share information.  Teal Tuesday is held at 8pm EST, and Teal Thursday at 1pm EST. You need only sign in, and click on the respective discussion topic to enter the chat room.. I host the Thursday afternoon sessions. Don't worry about being on time. Some join right at the appointed hour, others drop in and out as is convenient. Love to see you with us. 

Finally, Grace, I know you're afraid.  We all have been and probably still are. But there have been so many advances in treatment over recent years that I can truly say there is hope, maybe not to be cured, but to live a long and happy life with this disease.  Myself, diagnosed in 2017 but with recurrence in 2018. Normally I would have been back into chemo for the recurrence and then left waiting for the next recurrence, and the next, and the next. Instead, I was put on a drug called Olaparib....2 pills twice a day and it's been close to 2 years now and my cancer is showing no signs of further progression.  It seems every few months they announce something new...a trial, something approved.  

Hope to 'see' you at one of our next chats. In the meantime, use this platform to ask questions and reach out as you need. We're here for you all the way.....stay strong.  

PS: if you wish to ensure a particular member is notified of your response to something you need only type the @sign and then immediately begin typing their name and you'll see it pop up.  i.e. @Fearless - Vol Mod Click on it and then begin your comments and they'll be sure to know you had them in mind.  

nadiaC

Hi @mazzg. I’m also in Quebec, although based in Montreal. Not too far from Sherbrooke. I had vague abdominal pain that started around January and was treated for UTIs with five different antibiotics before getting an ovarian cancer diagnosis is June. I’ve had my uterus, ovaries, tubes, omentum, various lymph nodes and cervix removed and am currently undergoing chemotherapy. I can relate to your fear and pain...for me it’s gotten easier, although there are still entire days where all I do is cry. The Teal sisters on this blog have been incredibly supportive, so you have come to the right place for help and information. 

mazzg

@Fearless - Vol Mod and @nadiaC  Thank you for your support.  I feel a little relieved now.  I'm fearing the worst, of course, but you have already reassured me that I am not alone!  I have been researching my condition and sometimes the details of what might be coming is horrific.  It's not really losing my hair...it's pain. I am super-sensitive to pain and nothing consoles me.  I sit and cry...is that self-pity? I just want the pain to stop but, even though I'm on all kinds of pain meds...they only work some of the time.  I've never had kids, but I suspect these types of violent cramps are similar to contractions, so it feels like I'm giving birth many times a day!  Not being able to get comfortable, even though it's 2 1/2 weeks since my operation, I am, naturally, frustrated & angry.   What always comes to mind is  'I didn't sign up for this'!  I will definitely read all of the posts I possibly can to learn from other womens' experiences.  I will try to stay positive but living in a foreign language (french) and a foreign culture (I am a first generation Italian from Toronto) it's difficult.  Thank you all!  

Fearless

@mazzg glad to hear this group has given you some relief in your stress.  Regarding your feeling of isolation being in Sherbrooke, I can understand. My cousins were brought up in Ste. Hy as the only English speaking family there at the time and I can recall the challenges they faced.  I would like to put you in touch with the Regional Director Quebec in hopes she may know others in the area she can connect you to.  I will be on a call with her next week so will get back to you with contact information then.  

nadiaC

@mazzg I am sorry you are in such pain. It sounds really difficult. I hope your doctors can work with you to treat it. Although it is a poor substitute for in-person, I found having zoom and Skype calls with family to be helpful. Also I believe people can travel to QC from ON. Maybe your family could visit? Take good care and try and be gentle with yourself. You are going through a lot right now. Deep breaths and one moment at a time.

Bluebird

@mazzg..im sorry you're going through all of your pain..anger..and frustration...treatment here hasn't changed with the COVID, so I'm sure you will get all the necessary treatment you need from your oncology team..it will feel like an eternity until you hear from your oncology team...if it's like here, your file will be sent to the team, with the results, then your file is reviewed by a group of oncologists and the best treatment is will be discussed with you.  Treatment for me couldn't start for 4 weeks after surgery as you need to let your surgery heal and I'm sure it's similar with other womens experiences.  And yes lots of us do have side effects from the chemo we received but we have survived and I'm sure you will do well too.  Use all the available resources your facilty offers...I benefitted alot from using the psychosocial program, occupational therapist, exercise program, dietitian...I think I chatted to everyone to empower myself through my journey.  Maybe as @nadiaC said you could have someone from your family come and stay with you...

Bluebird

@mazzg..its ok to feel like you do..be kind to yourself you're going through alot...

Jackie

Welcome @mazzg. My father was born and raised in Sherbrooke, but I was born in Ontario and have lived almost my entire life in Alberta. I’m not fluent in French, so it was always a struggle when we would visit my dad’s relatives. I’m so sorry to hear about the painful complications that you’re having following your surgery. Your case sounds a bit similar to mine since the cancer was found in my uterus and cervix as well as my right ovary. It was the endometrioid type of ovarian cancer. 

mazzg

Hi Jackie.  There is supposed to be a group available here in Sherbrooke. But their site is all in french  (no translation) and I sent an inquiry in English yesterday but haven't heard back yet!

Elsie13

Hello @mazzg - 

 I'm in Montreal. A couple of the big hospitals here are designated as English language hospitals. However, now and then a technician or someone at the hospital will start talking to me in French, so I say something like "Oh, what was that, I didn't catch that?"
     I had a hysterectomy in Nov. 2016, due to large ovarian cysts. I was diagnosed with stage 2 ovarian cancer, with adenocarcinoma and clear cell. I had 6 chemo treatments and 25 radiation sessions.  My blood tests show no evidence of disease.
     For me, the chemo started six weeks after the surgery. A hysterectomy is a big surgery, and they want you to have time to heal.  There's a whole extra layer of worry in these times of the pandemic. Still, I feel that your doctors will try to start your chemo around  the six week  mark. Possibly, you are 'penciled into' the schedule, waiting for the availability of staff and operating rooms to be finalized?? 

Elsie13

@mazzg, If it's OK to ask, do you take medications for  bipolar disorder?  Is it possible that those meds make the pain medication less effective?  I don't have any medical training, this is just a thought. 

mazzg

@Elsie 13  I do take medication for bipolar but I was told they wouldn't interfere with the pain meds. 

Bluebird

@mazzg...be sure to let the oncology team know about your sensitivity to pain and what the plan will be for you with medication if you should need it...I am hoping that that you start feeling better...and sending you positive thoughts..hope that you can have a wonderful Thanksgiving!!

mazzg

Hi Bluebird!  I definitely will.  I did tell the surgeon - but they never believe me.  I had a tiny biopsy done under my tongue and my whole mouth blew up and my tongue took up too much space in my mouth, that it hung out!  I had to rush back to the dentist for a shot and meds. to take home.  So, when I tell them I'm extremely sensitive to pain...they usually fluff it off!  

Bluebird

@mazzg...that's not good...hopefully this pain you have now will go away..and you will sail through your chemo treatments...did you have a reaction to the medication, anesthetic they gave you?  Usually you take a few meds within a certain time frame before your chemo...those medications help prevent some of the side effects that the chemo can cause like nausea...so they do take alot precautions..and you're given prescriptions to fill before your first chemo with meds you can take at home...to help if you have affects like nausea...my cancer centre also has an emergency line if you have issues after chemo..so maybe yours does too...I also went thru a general education class on chemo therapy which everyone had to go through here in Edmonton....but it does give you some good information...of course the good thing...everyone responds and goes through their chemo differently...and side effects are different for everyone...be sure to tell them how you are feeling and doing...sometimes the oncology team will adjust the dosages of the chemo to ease the side effects...remember you have a whole team working with you..use them...and you have a wealth of information with us...😊

Jackie

@mazzg I can really understand why it's frustrating for you and very isolating to be in Sherbrooke. It's a much smaller city than Montreal and it's predominately French speaking. It sounds like for now you might have to relay heavily on virtual support like OVdialogue. I suspect you will need to cumulate to Montreal if you wish to access in person support groups and other psychosocial resources. Meanwhile @Bluebird has given you some excellent advice about undergoing chemotherapy treatments. I was required to take an orientation course at my cancer centre before I had my first chemotherapy appointment. They provided me with emergency numbers and information about side effects. I had prescriptions I had to take before they administered the chemo drugs Carboplatin and Taxol.

kattie666

 @mazzg Good morning.  I too was pretty scared and dreading Chemo.  This Covid twist of doing everything alone certainly did not help.. I had surgery on May 8th,2020 to remove a "watermelon size" tumor from my left ovary.  Full hysterectomy, and varies samples to biopsy.  I suffer from anxiety and depression and PTSD.  Diagnosis came June 10 and Chemo started Jun 18.  The chemo nurses were absolutely awesome.  After my first round they had me feeling so much calmer.  Everyone is different but hearing a positive story certainly helped me get through.  I just finished my 6th and final treatment yesterday.  Wishing you smooth sailing through yours, and hope you find English speaking help! 

mazzg

I sure hope my hospital has resources for me. I would love to take a course on chemo, that would ease my mind.  @Bluebird mentioned my sisters coming here.  That would be nice, but we have elderly parents and two of my sisters  have immune deficiencies!  It's just not possible.  But I do have a few friends here - being hit with mania and then depression in my early days in Sherbrooke, it was hard to keep friends.  I'm just overwhelmed at the 'stuff' one may need for chemo.  I'm looking on line - going through wigs, caps, beanies, soft sheets, towels & washcloths, moisturizers, shampoo, etc., etc.  And worried about my husband, who will have to take the load!

Elsie13

 @mazzg - Those things you mentioned, "  soft sheets, towels & washcloths, moisturizers,"  I didn't buy anything like that.  I just used stuff I had at home.  I may have bought some baby shampoo.   At the Glen site hospital in Montreal, there's a cancer resource room, with books and pamphlets.  I asked in there about a free wig, and one of the volunteers took me into a little side room to try on wigs.  I received a free wig and two free scarves.  So be sure to ask if the hospital has that sort of thing. 
I was scheduled to go to an information session, 2 or 3 days before chemo, but they phoned to cancel.  The presenter had the flu!  (This was at the end of 2016).  Anyway, the ratio of nurses to patients in the chemo suite, it was one nurse for 3 patients, and they tell you what's happening. 

Bluebird

@mazzg...I know each centre is different but as @Elsie13 said..maybe there is a wig  service.  We have a wig room...it was like a library of wigs..borrow one like a library book...though maybe with COVID maybe you have access to one wig..check it out...not all chemo drugs cause hair loss...and if you are on the drugs that do..your hair will start falling out around the 13th day or so...it wasnt too bad for me...I quite liked my baldness..I embraced it..I did find I got cold faster with no hair..I wore tougues and ball caps...I too used the lotions and soaps I had...but unscented stuff for me works best anyway...and club soda worked well when I had some mouth sores...my mouth seemed to get sensitive to toothpaste..my dentist did give me a toothpaste that was really good..nonimbracive..silky...I'll get the name of it...i found that i was quite sensitive to heat and cold as well...I just used the same sheets, towels, clothes that I had..