Community Connection: Ovarian Cancer Canada is looking for volunteers! Could you help?

OVdialogue – consider joining our team in the role of Community Champion. 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).

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  • @flory I had my surgery in July of 2018, at age (almost) 61.  Prior to diagnosis I felt like my health was great, other than my osteoarthritis.  A tiny bit of vaginal bleeding led me to the doctor, no pain or other symptoms. My genious gynecologist performed my 4 hour surgery laparoscopically, also brought in another surgeon to remove my appendix, as the cancer had spread there.  My cancer is the most common one, high grade serous, stage 2c.  I was, thankfully, in hospital overnight only.  I was fortunate that my recovery went smoothly.  My pain was minimal, I had lots of gas and a urinary tract infection.  Other than that, I remember being annoyed that I couldn't get back to my regular activities.  The mental/psychological pain, however, was real.  The waiting, lack of information, and worrying is excruciating!  One of the biggest lessons I have learned is to advocate for myself.  Our health care system is under a lot of stress and many things seem to fall between the cracks.
     
    Because I was doing IP chemo I had a second smaller surgery about 2 months after the first to put in a port and a catheter into the peritoniel cavity, and to have a look to see if I was optimally debulked, as my surgery had not been performed by a gyne-oncologist. The pain I had after that little surgery was terrible for some reason, maybe because the port was right against my ribcage. (Lots of pain also when they removed it 6 monts later.  Felt like a shock to my system.) Chemo began shortly after that, 6 cycles of carboplatin and paclitaxel.  Don't be surprised if you have some delays with chemo due to lowered blood counts, I think that happens to all/most of us.  

    Paclitaxel will cause your hair to fall out.  Some women shop for a wig before this happens.  I found the hair loss to be much more difficult than I anticipated.  I was so relieved when my hair grew back in and I again looked like myself.  

    Flory, I wish you all the best on September 6th, and will be praying that your surgery and recovery go well.
  • @crazycat  I found that I loved wearing wigs. I was donated five, and bought one. The one I never wore of course. They were all different and I discovered my hidden love of disguise. I got quite irritated if people recognised me. They had to match my outfits, so I wore more of the clothes in my closet too. My hair grew in very curly and that was a new thing for me as well. To be honest, I prefer the wigs.
  • Thank you @CrazyCat! 💕
  • @flory. Have stuck with cvh although I did speak to a Dr at princess Margaret about trials.  That trip downtown is a haul but you do feel like you are among experts once you walk in...  If you live closer to jurvinski then maybe check out moving file especially if chemo in your future. I live near cvh so works for me for now. Many of their med oncologists trained at pmh. 
  • Yes @Bobby I will need chemo and jurvinski is an easier drive. First I need to survive my surgery then I will decide where to do chemo. Dr Kate pulman is doing my surgery at CV. Fingers crossed all goes well 🤞🤞🙏🙏 Thanks again for talking to me. 😊
  • Strongwoman
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    @flory I was at Juravinski for one chemo treatment before I switched local. They were very kind and attentive. It is a very large area compared to my local chemo unit.  They supply drinks but no food while at Juravinski. I brought my own as I ate light during chemo plus I don't like hospital food.
    Only reason I switched is due to length of day. Juravinski added another 2 hrs onto my chemo day and I didn't get home until 5:30pm and started by 9am.
      I wish you well in whatever your decision.
    I know you will be in good hands with your surgery. The waiting until that day is tough. Hang in there!
  • @Strongwoman thank you for that information. So many things to consider!
  • Hi Flory, I just joined this group about a month ago and have found everyone to be extremely supportive.  I had debulking surgery on August 2, and it was a tough go for about 10 days afterwards, but I made it!  I started chemotherapy exactly 4 weeks later on August 30th, so today is Day 5.  Based on my experience, you will need people to help you, so please reach out to those you can count on.  I found myself getting a bit confused about my medications upon hospital discharge, so I made sure to have a notebook and had a friend make notes.  Sometimes there’s so much information, that I was overloaded!  I definitely needed someone at home after surgery to keep an eye on me and help with meals and housekeeping.  As stated earlier, this is my first round of chemo, and after a day or two the unpleasant symptoms began (joint paint, fatigue).  Luckily I have had zero nausea, and am focusing on eating regularly and taking in lots of fluids.  We’re all in this together, and I have appreciated the support from the women in this group.  
  • I also found that cbd oil worked better than anything else for leg pain after each chemo treatment. Passing this along for whoever might benefit. 
  • thank you @HorseGirl and @LynneA. I appreciate the information and suggestions. I do feel the support on this site and I wish good outcomes for us all. 💕
  • Strongwoman
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    @flory Hello.  I am checking in to see how you are doing.  If you would like to share, I would like to see how you are, how you are feeling and how treatment is going. Take care
  • Strongwoman
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    @HorseGirl How are things with you?  At what point are you with treatment? How have you been feeling?  I would love to hear an update and some of the gals as well. Take care
  • Hi Strongwoman, things with me have been mostly positive, but annoying too. Started to lose my hair two weeks after my first chemo treatment, so after 3 days of that nonsense I decided to have my head shaved.  The lack of hair has been quite a mental adjustment, as I feel quite self-conscious in public.  I think that I look like a weirdo, but my friends have complimented my baldness.  The look on my grandson’s face was something! Lol. Tomorrow is chemo treatment #2.  I’m typing this since I can’t sleep thanks to the dexamethasone, and more to come at 3am! Despite some occasional anxiety, I’m mainly frustrated that I can’t ride my horses.  I feel envious of the folks who can, but I realize that I need to be patient.  I am working on meditation and breathing exercises to help me relax, and am trying to find less strenuous ways to occupy myself.
  • Strongwoman
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    @HorseGirl  ooohhh can I relate!  I don't think I slept at all the night before the chemo, for that exact reason. The Dex!  So I am positive you may be up now.  This seems to be my new waking time. Yuck! Had some suggestions from my Palliative Doctor yesterday and hope they help.
      Treatment number 2 was my worst for side effects, we adjusted meds for after and was mostly good for the rest of them. If you do have bad side effects, let your team know so they can adjust meds. My little cocktail included Dex and another med the couple days after which helped immensely.
      Hair oh yes our almighty crowning glory. I wrote a post entitled  "they say it is just hair". You may find it interesting. Mine came off as my scalp hurt so much. My son and I did each others. My husband cleaned us both up after we thought we were done.  It was an emotional day.  I was surprised that I didn't look too bad with no hair. No lumps or bumps and my had wasn't misshapen. I will say I was a little self conscious in the beginning and mainly wore headscarves. Due to my cold head initially. Then I forgot one day and found people stared regardless of scarf or no scarf. That is when I didn't care and felt stare if you want to stare.
    I got all my scarves to match my summer outfits.  It takes some adjusting and others wear wigs and are confident in that.  If you want the site I ordered my headacarves from, let me know and I will send you the link. A lot were very fashionable.
      Can you walk your horse or spend time with him/her that way?  Yes, I believe we all go through an adjustment period while on chemo of being unable to do some of things we used to.  Some due to surgeries and others due to the effects of chemo on themselves. I walked a lot when I started feeling better after a chemo day. Had to start walking with hubby or one of my boys until I felt stable then I could go on my own.
    I used to run so it was difficult wrapping that around my head as well. It passed and I found something to get me through. I am hoping you will too and remind yourself it is temporary.  I found the mediation esp before bed helpful but eventually I had to go on a sleeping aide. Which was working but as you can see here it isn't anymore. So I will add in some melatonin in conjunction with my sleep aide and go from there. No sleep, no recovery time physically or mentally. Don't be afraid to ask if you think you need some too. It never worked taking all the dex the night before but was great afterwards.  I was not really a med taking person before and now take what I have to take. It is difficult coming to the realization we need it and it's okay.
    I hope this helps, that you either rest now or go watch TV and have a cup of tea or something to relax.
    Wish you well today, that you will experience minimal side effects and rest the next few days.  I will be thinking of you, take care of you!
  • @LynneA Is the CBD topical or oral? If oral, does it work with only muscle pain?
  • @Hooodith it is oil that you take by mouth.  It helps with the muscle pain and achiness and helps me relax and sleep.   The type I was prescribed has very little THC.  It works fast too.  Didn't get rid of all the leg pain but probably 75%.  Definitely worth a try. 
  • @LynneA   Thanks so much for this info. I have a local weed shop I will consult with. Did your oncologist OK it?
  • Strongwoman
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    @Hooodith  I also use CBD in fact my brother-in-law grew a specific one for me that is used for epileptic and palliative patients.  I did okay all of it with my Oncologist.  I use it for nausea, body/jt aches and when I feel generally unwell.  I don't use it daily, only when I feel the need due to symptoms.
    There are also CBD bath bombs or salts that are available in most cannibis stores. After discussing with your Oncologist it may be a way to start as you aren't ingesting it. 
      Wish you well with it and hope your Oncologist is receptive to it as well.
  • @Hooodith my oncologist referred me to a medical canabis doctor who prescribed the oil.  They also connected me with Aurora Canabis who fill the script. 
  • Strongwoman
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    @Hooodith I did the same as @LynneA initially. I found that I was very hesitant about all of it initially. Including speaking to medical cannabis doctor on the phone about cannabis (CBD & THC). I learned about what each were and the uses. I found it a little confusing in the beginning. I guess it is not unlike speaking to our family physician or Oncologist but for me it felt different. Nonetheless I tried it and did not like taste of the oil.  I actually don't like the taste of any of it but have not tried edibles either. Then I tried a bath bomb and made sure I had family in the home because I was hesitant with it as well. All I felt with it was an overall relaxing feeling of my body. I have been open and honest with my Oncologist and asked about how they felt about it regarding my case.  One of the things that swayed me to use it is when I am in pain, I try the CBD first to see if it will calm it before going to my breakthrough meds. I, like many others, have issues with my bowels and more pain meds = constipation for me. Everyone is unique regarding their bodies, your diagnosis, symptoms and how you react to medicine etc.  It is why speaking with your Oncologist is paramount. I had never used any cannabis products until the last year. Like any decisions we make regarding our health we ask ourselves the questions about pros/cons, drug interactions and for some the quality of life we will obtain from it.
     I wish you the best in whatever decision you make.
  • CBD oil has really helped my restless leg syndrome which was driving me insane!
  • Hi @Strongwoman my surgery went well. Thank you for checking in on me. I am starting chemo at credit valley on Wednesday. I will receive IP and IV chemo. I’m pretty terrified. I hope I can tolerate it well. I also hope my bowels start working better soon. Nothing feels quite the same anymore. For anyone who has had both chemos together I’d love to hear of any tips or suggestions. Thank you ❤️
  • @flory I had both chemos.  It was a long day because they had to go slower with the iv because I have small veins.  You can ask for ice boots and gloves which may help prevent neuropathy.   If nothing else it is distracting lol.  I took lunch and small snacks with me.  Had to go pee alot due to the fluids.   Laxative was my best friend through through all 6 cycles.  Find one that works for you. 
  • @LynneA What type of laxative did you use? I’m taking senokot post surgery and it is somewhat effective. Maybe I should pick up some stronger stuff?
  • Hi @flory, chiming in here on the laxative question.
    I was shocked and honestly traumatized by how constipated I was after my first chemo. I tried senokot but it wasn't quite enough, and when I mentioned it to the oncology nurse practitioner, she suggested Restorolax. It did the trick. It's a tasteless powder that you dissolve in a glass of any temperature liquid. I had it in a glass of water every day and it worked like a charm. 
  • Thank you @Petra! I will pick some up tomorrow!
  • Strongwoman
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    @flory I am thankful you posted. Glad to hear your surgery went well. I remember being scared as well for my first chemo.
    @LynneA had a good suggestion for you.
    Restoralax puts the water into the bowels to soften the stools and Senokot increases the movement in the bowels to push the feces through and out.  Some ladies take a combination of both. This is best to discuss with your Oncologist/Team.  It took me awhile to get my bowels in a normal rhythm post surgery. Be kind to yourself and reach out/ask if you need anything from your team/Oncologist. 
    When you go to your first chemo appt you will be invited in by a nurse and seated. You will speak with a couple of different people before they begin. One of the people you speak to is the pharmacist who will go over what you can and cannot eat and your meds.  A nurse will start the IV and begin it, they stay close to you in case anything adverse occurs. For me, I started getting really hot, nauseous and did not feel well. They stopped the IV immediately administered Benadryl etc, I waited a short period of time and then they do what is called a re-challenge.  This means they start it back up and make sure you can tolerate it. The IV pump will begin slowly and they may increase it in order to find what is right for you.  I would suggest wearing comfortable clothing that is easy to remove for toileting and is comfortable to sit in. I took a small pillow and blanket of my own but they have those available at the hospital. You will be in very good hands, supervised and will be walked through the entire process.  I had someone take me to my chemo appts and pick me up to go home.  One is very fatigued after your day there. 
      I hope this info helps and if you have any other questions, reach out.  We are all here to help you.
    Take care
  • Thank you @Strongwoman I appreciate the suggestions. It helps to calm my nerves a bit to speak with others who have had the same treatment. 
  • @flory,  I agree totally with @Strongwoman,  it is a tiring day.  I was dropped off and picked up after treatment.  Restorlax was my best friend , it took some time for my insides to feel normal.  I felt really good the first couple days after treatment due to the meds, day 3 after treatment was my most challenging.   Sending positive thoughts for good outcomes.  You got this!
  • @Flory I started with Restoralax but found it upset my stomach and I had trouble drinking it.   I switched to sennacot and a stool softener.  A friend of mine found milk of magnesium worked best for her.   Your health team will guide you about options and dosage as well.   Drinking lots of water is really important.   I found I liked the water cold so I keep a container in the fridge.   Popsicles were something else I enjoyed.   Throughout the healing and treatment I was amazed by my body's strength and healing capacity and I tried to find something each day to be grateful for even just the view outside my windows.   I also found the social worker at the cancer centre was a great help when I needed to talk.   Don't be shy asking for help.   Lynne