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).
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).
Ovarian Cancer Canada is thrilled to share that we have some exciting updates on the way for OVdialogue. These enhancements are designed to strengthen our community and make your experience even better.
Stay tuned for more details, and feel free to share your thoughts below. Let’s make this community even stronger!
Stay tuned for more details, and feel free to share your thoughts below. Let’s make this community even stronger!
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Comments
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@JoanEG That sounds like you have it under control. Are you driving yourself or someone taking you? Rush hour can be so unpredictable can't it?0
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@JoanEG. I sighed when I read that about the req going to the wrong place. I am so glad you were able to get it sorted.Take a favourite blankie with you tomorrow. If its the chemo I had last year and I think it is, it is a few hours and you can get quite cool. At NRGH they give you warmed sheets that they call blankets, but the warmth dissipates quite quickly. I used to take my fuzzy Xmas blanket, and I would cosy up under it and sleep for quite a long time. They would give me Benadryl with the first lot and that helped. On my first chemo I was so anxious that in the morning, I took, with permission, two clonazepams ( tranquillizers) and they and the Benadryl put me into a deep sleep, to the extent that I snored loudly and disturbed the other patients. It was firmly suggested by my nurse that I cut back on the tranks. The next chemo I had, they put me in a side room. It was lovely and quiet there so off to sleep I went again. And snored. I know this because my husband was allowed to be with me for the first one, and he was able to visit intermittently after that. I think he was a bit amused by my snoring. Now my chemo is only 2 hrs and there is no Benadryl. And no sleeping.
I wish you comfort and ease tomorrow. That combo of drugs gave me almost a year of remission, and I think, if I had not had such an awful response to Letrazole, it would have been longer.I will be thinking of you tomorrow, sending good vibrations down the road to the Cowichan.1 -
@JoanEG. Just realised, you are going to Victoria. The good vibrations will be gliding and soaring over the Malahat, picking up speed past Goldstream, and zooming down Bay St to the big clinic. I hope you have someone to drive you home. And I hope you get to see and appreciate the beautiful artwork everywhere. It blew me away when I went there for radiation trtmnt six yrs ago.1
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Hi everyone well back in hospital. I developed pretty bad right side pain. I thought it was a pulled muscle near my liver but after ct they say oh look like a blood clot. But their not sure it isnt really clear. So they start me on heprin drip bern here since sat. Next thing u know my alkaline phosphatase starts really climbing and so does my ggt. Over 800 for 1 and 700 for the other. I ask well it wasn't that high when i came in could it be the heparin. Ok well 4 days later after it still climbing like 100 each daily they take me off heparin and start doing injections. Well on top of it guess what being in hospital my c diff is back they just sent test upstairs. Blood in my stool again. So here we go quarantined.
On the other hand they do more blood test to check my levels, well wouldn't u know it i was right ggt and phosphatase levels are dropping. And i started chemo just my 1st chemo of abraxane 2 weeks ago when i came off the vancomycin . And they just did my ca125 marker today to check That had climbed to sky high their after a month and half. It was at over 700 in 2 weeks from sept 17 to over 8600 in 2 more weeks. Well that dropped to just over 5500. So hopefully we have a plan moving forward so i can continue to fight my cancer.
Been hard on me going through this. I have my kids but i tdy to explain and they dont quite get it. My dr here thought perhaps i might have metastic cancer in the tiny bile duct branches that is so sm they cannot see. But if my levels keep dropping all the better it would mean their wrong i pray2 -
@Eileen You have been through the wringer, again! I am sorry to hear this. You are catching much of a break these days (meaning times of stability/consistency). Sorry to hear that your children who are to be your support are not understanding what you are going through. That must be both frustrating and disappointing at the same time. Is there anyone else or a service of some sort to get more support from? I will also pray with you that you are not experiencing metastatic cancer of any type and that the CA 125 levels will continue to trend downwards.
Question for you today, "What will you do for YOU today?" I feel you need something that is relaxing and chill. What will help you recharge yourself? If you know the answer, do it and fill yourself back up. We are here for you whenever you need. Take care of you and thank you for updating us.0 -
@JoanEG Thinking of you today and sending good vibes that your trip is flawless and you are early to your appt. Take care and let us know how you are feeling over the next couple of days, when you feel up to sharing. You may still be "up" today from the steroids and tomorrow may feel different and more fatigue. We will see as we all respond differently.
Take care1 -
Thank you @Strongwoman I will let you know how it goes.0
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@Eileen. I hope your levels continue to drop as well. What a rough road you are on right now. But I hear your determination to keep fighting in the face of all those difficulties. I think your mindset is half the battle. I think our bodies respond to our courage i f they are at all able to. And particularly if there is a reason for us to overcome the odds, like a person or a goal. You must have one, or two, or more.1
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@Strongwoman Yes the most discomfort comes from wearing a bra and anything around my waist, especially with the hernia sticking out. YUK! I had three weeks between drains but the last few days were really uncomfortable. I already feel it accumulating again and I have gained two pounds since Tuesday so that is a sign it is coming back. Hopefully it slows down. The other side effect of acities is it makes you very tired so between that at the treatment week it can be frustrating. I am doing okay for sure. I expect a lot of myself and I don't like not having energy on those days. I am much much better about napping. Before OC it never occurred to me and then it still seemed like a waste of time. LOL! Now is have embraced them
We went out for a lovely fun dinner with good friends last night and it felt so good (and I did as well).
Yesterday, a dear close friend of almost 40 years (he is 61) decided to end his fight with cancer. He was diagnosed in April and was doing okay but a few weeks ago that all changed. It was fast. It made it so real for me and hit me hard. Some days it is so hard to be positive, but after a good cry and lots of hugs we have to move on.......
Sending all good vibes and strength to those who are on this journey. Have a wonderful week-end.
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@Taita Definitely uncomfortable for sure! I, too, have a hernia that bothers me and sits just below bra level. Nothing they can do but sure is uncomfortable at times. I hear you about not liking the low energy when you want to have high energy instead. It can be incredibly frustrating. The night I was going with the kids to the Fear Farm, I knew I had to nap or would never make it. It did help. I know I am being stubborn about the napping currently but I have this niggling feeling it is going to slow down for me soon. With that being said, I am doing what I can while I can before I can't. Like beating a clock that you don't know when it will stop.
I am sorry to hear of your loss. I find it gets more and more difficult when we lose someone close as we often reflect on our own state and where we are headed. Crying is good and healing in many ways. It is difficult to remain positive ALL the time and is okay not to be some days. We are human after all.
Hoping you do something for yourself this weekend.
Take care.1 -
@Eileen Checking in to see how you are doing now? Feeling up to sharing an update?0
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Well frustrated and feeling overwhelmed. Like its not going anywhere. Still have blood in my stool diarrea so they redid another c diff test they in meantime put me under quarantined until test results come back. So ok they came back neg again. They do continuously bloodwork keeping an eye on my liver enzymes and my hemoglobin.
It also doesnt help when u never get the same dr everydsy. I got 1 dr 2 times. Then another dr 2 times. Then an oncall oncologist. Then a gi specialist guy. Now it back to another dr. Now he sayong ok consult with gi specialist again to come see me. Its like a yo yo. You constantly have to repeat your whole story. From the time i first came in with bloody stool and they did test and said oh u have c diff. Ive had few dr tell me you will not get accurate tests while on vancomycin because it can give u false reading. My issue only started when i finished the 4 pills a day for vancomycin. But yet im on the pulsing of vancomycin q pill every 3rd day. Well pain calms down on that day like hello people.
So i told them ok I'm frustrated its been difficult. I understand they have do tests 1 a a time. Its seems u come in for 1 thing then another thing happens. I mentioned i worried about being in here being my immune system low. Like hospital are the worse for catching other things. Im in the extended daycare surgery where they have people only here for 24 to 48 hrs max after surgery. So it less chance here. So now its back to the gastrologist. This new dr is going to talk to him. He said oh they might have to do colonoscopy. I said it was done when i first came in but they cannot get past 30cm because of my cancer surgery that i had in 2021 its caused a sharp right turn that the camera cannot get passed even with water fusion. The gastrologist at that time told me in advanced that due to my surgery things could be compacted and might be hard. Well this dr says ok they might do something called radio something. I asked ok what that. He said its where u swallow a pill that has a camera in it and it goes through your gi tract and takes images. I asked ok how long does that take to do. He said well it has a little battery in it and normally takes 24 hrs to go through. But he said that would be the gi call. He will talk to him and have hom come see me. So this is where we are at. Still waiting. My daughter suppose to come visit today. Im suppose to have chemo this coming up week if things keep going this slow id very much doubt it.1 -
Round one of chemo done. Not without a hitch as I had an allergic reaction to the Paclitaxel so it made for a very long day. Next time will be much better as it will be close to home.
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@Eileen Good for you. Yes, that does occur for some people. Glad it's done and you now know what to expect. You look great. How are you feeling today?0
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@Strongwoman I am feeling really good today. Taking advantage of being jazzed on dexmethasone to do some batch cooking and get stuff done, lol.0 -
@JoanEG congrats on completing round 1 ! Ah the lovely taxol..... I myself had a very bad reaction my first dose. They ended up stopping the infusion after 2 mins, gave me extra IV decadron then started infusion slowly and still reacted. Then came more benadryl and an extra nap. For me, it took till after round 3 to stop a reaction. The perfect mix was replacing the benadryl with reactine. But that's me, hopefully you won't react again, and hopefully the side effects will be mild1
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@melissa good grief then I am thankful my issue resolved itself quickly! They have given me a prescription for dexmethasone to be taken 12 hours and 6 hours prior to my next round. Hopefully no more issues. I think the thing I found the worst was having to pee every 20 minutes! At least I was getting some steps in after spending an hour and a half in the car to get there then all that chair time!0
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@JoanEG they gave me that same prescription for the steroids 12hrs then 6hrs before. They didn't stop me reacting. Mind you apart from the first reaction the following ones were milder, probably cause the infusion was slow. Make sure they start the infusion slowly next time.
Yup, peeing a lot is pretty standard for myself each chemo I think I walk to the bathroom minimum 4 or 5 times. I'm also there all day : (
Make sure to hydrate very well, hopefully you won't have nausea and can eat well, lots of protein etc
Hopefully the nurses gave you a booklet of what side effects you can expect?1 -
@melissa I was given a full hour of education prior to my first round plus attended a zoom session. I am hoping the nausea is minimal as I have already had it bad. I have training in nutrition and have lots of soups and easy meals in the freezer as well as all the fixings for protein shakes. I have a huge supportive family close by who will keep me on track, lol. They nag me everyday. 😁0
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@melissa @JoanEG I had the steroids prior to and post chemo. My Aunt who took me to my appts would laugh and laugh at me going in. I would be chatty chatty chatty and silly and then when she came to get me I was quiet and tired. The post meds helped with the nausea side effects for me. I didn't sleep well but on/off naps helped.
I peed myself the first chemo because I left it too late. If nothing else, it was memorable! In fact I feel I still urinate a lot. Good grief eh? Look at you with the sense of humour!
@melissa Sounds like a rough start and that you have a cocktail ready now that is working. I, too, had to have my infusion start slowly. I was also there all day. My last chemo day I was there from 8am -7pm. Everything and anything went wrong that day. A memorable finish as well for me.
Stay well and try to rest.1 -
@Strongwoman OMG I was leaking all the way to the bathroom! I quickly learned to not wait! I had my undies stuffed with toilet paper just in case and sat in my blanket instead of using it to cover me! 🤣🤣. I’m so glad to hear I am not alone! Ext time I will wear protective gear!0
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Ugh I should proof read0
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@melissa Grief of anything is tough. I am sure you have already, are any grief support groups a help to you?
You are correct, research is being performed and being hopeful that it will come to fruition for our individual types is good. Reading too much negativity about our conditions does not help us and probably hinders our progress/healing. I have a good/bad relationship with the internet. All depends on how far down the rabbit hole we want to go.
You have given some great tips. Thank you and for sharing parts of your personal story1 -
@JoanEG LOL You are definitely not alone!1
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Well…this is where my mind wandered today…🤣
Life is a roller coaster. When you add cancer, the inclines and declines become steeper. And, as we move through our journey, the inclines become more challenging, the declines are like free falls and you have to do what is best for you to stay on the track. How we navigate our disease is personal. How we choose to attack those inclines and declines is personal. We are all on the same roller coaster together but we are experiencing it in different ways. For me, this forum is the part of the track that helps me catch my breath before, after and during each dip in the ride. Thank you to @Strongwoman and all the woman who add their voices here in support of us all.
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