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]).
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]).
Feelings of poisoning
Hi I'm Grace and I just had my first chemo. treatment session - 6 hours of Carboplatin & Taxol and, they gave me benadryl so I was really out of it. But as soon as that started to wear off, my insides started hurting. Really feeling like I've been poisoned all over the place - my arms, legs, abdomen, chest... Has anyone else felt this?
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@mazzg I'm sorry to hear of your discomfort but this is something you need to report to your medical team immediately. Please ensure you consult with them and follow their direction as it relates to anything you may wish to try to relieve the symptom. I hope though that the discomfort has resolved or is at least lessening now.0
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Hi @Fearless - Vol Mod Thanks for your concern! I did manage to get through the day with mild discomfort. I have a nurse coming tomorrow to give me the injection of gratofil so I will tell her. I’m bracing myself!!0
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Hello @Fearless - Vol Mod I had a Huge allergic reaction on my third day of taking the grastofil for immunity. The nurse was here to supervise my husband on the first 2 days and there were no incidents. Then, on the third day, everything started getting dizzy, I felt this intense heat in my chest, then the urge to defecate. I tried to get to the bathroom & fainted...luckily my husband caught me. I continued on my way and ended up on the floor in the hallway. Again my husband was there. Then I was on the toilet and the next thing I knew I was on the floor. Wow! That was such a powerful reaction - I'd never had such an allergic reaction before. My husband called Emergency & off I went to the hospital. They stuck me a million times everywhere (it was 11am). And then they left me there for hours! Without a place to go potty, even though they were infusing me fast with benadryl. It was so miserable, I spent the whole time crying cuz of my depression. Hospitals traumatize me and sitting there alone, with no one tending to me was just intolerable. They finally came when I called so I got a potty, but they left me with no toilet paper
An hour later I asked if I could eat. They brought the food and placed it on top of the big garbage that they put the used PPE in. Out of reach of me. An hour passed and I finally rang again. Asked for the food. And toilet paper. I cried for hours and hours and no one came. I e-mailed my psychiatrist of 18 years, my oncologist, the pivot nurse...no one came, not even an oncologist from the hospital. They told me that I would have a 'team' at my side, but there was a phantom team, I guess. At this point, I have decided that mentally and physically, I can not continue with chemo. My husband is not allowed to come in with me due to Covid and I can't go through it alone. There are too many skeletons in my closet about being locked up in the mental ward that I can not be alone in hospitals. Not sure if anyone can understand this. Stage 3 slow-growing - I think I'd like to wait until January. Maybe then I'll have the mental and physical ability to battle the cancer. 0 -
@mazzg I am so very sorry for your entire experience and understand why you say you're leaning to discontinue your chemo until a later date. I wish I could wave a magic wand and make it all better. Much of what you have experienced is similar for many of us but in your case the intensity is so much greater. I can only imagine how terrible that is for you and for your poor husband. I'm sure you don't intend to just arbitrarily stop the chemo without consulting with your oncologist. Hoping he or she feels delaying treatment until the new year...maybe Covid over or the restrictions somewhat relaxed...would be a possibility. Do discuss it and perhaps include your psychiatrist to ensure any decisions address your overall wellbeing.
We'll be thinking of you and hoping you're able to bring your treatment to a much more tolerable place.
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@Fearless - Vol Mod - Good morning! Yes, it has been a steep uphill battle for me, even after one 1/2 treatment! I haven't taken this position lightly - having spent 5 hours in the emergency room crying, with no one doing anything about it - I realized that while doing chemo, your mental health is put on the back burner. Covid is all they are worried about, and isolating those with a mental illness should not be the practice in the hospital. I was in a private room - there was no good reason for my husband being barred from entering. It was just 'policy' without exception! I have done endless research for an English psychologist in Sherbrooke to help me with this but, came up empty. Websites aren't translated and, although there is a resource for cancer patients, all services are in French. And my psychiatrist of many, many, many years knows no one either!!! While in Emergency I pleaded with my oncologist and psychiatrist for help, but there were no replies. My psychiatrist was notified by the Emergency doctor, but she could do nothing at that late stage (4:30pm) of my incarceration! I couldn't even speak to her I was so irate! It took me 2 days to calm down and now I have this strange phobia of going to sleep. Go figure! My husband and I will definitely be speaking to my oncologist about this whole situation on Nov. 9. So, maybe she'll have some other options for me. That's my hope. I do want to beat this cancer, but not at the expense of my sanity! I've been there before, and it is not a place that I am willing to revisit, despite this physical infestation. Thanks so much for caring @Fearless - Vol Mod!!0
