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]).
The "C" word.
Do you feel like people are tired of hearing you talk about cancer? I really want to talk about my cancer. I want to talk about what I went through to every one I meet. But, I have learned that others don't want to hear it. I sometimes try to jokingly add it to a conversation, but it never goes over very well. I often get those weird looks and awkward silences when I say something about having cancer. I feel like people want me to move on. It's over with, Amanda, move on. Does anyone else feel like that? I am so excited to talk about it here with others like me. It was hard. It was scary. I am still in pain from my hysterectomy. I don't have my muscles back yet. I can barely go up the stairs. I am going through surgical menopause before I am supposed to. I can't have kids. I am now always irritated. Sigh! That feels so good to unload. And, I bet you get me. You know what I am talking about. You have gone through it, too. Or, you are going through it. Do you feel like you can't just talk about it with everyone? Or are you telling every stranger "Hey! I had/have ovarian cancer" and then they give you this Wow!-that's-too-much-information-that-I-can't-handle look. Is it just me or do you get that look, too? Being able to talk about what I went through, out loud, is my way of saying it and then letting it go. I am trying to find people who get me, who know what I am talking about and who understand it all.
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I think the most interesting reaction I see is the look of shock when I just say it as if its a common place fact - which it is, I had cancer... it happened, there is no denying it, so why not say it as point blank as saying I dye my hair?1
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I understand what your feeling and feel that most people would rather not know about it or wish I'd move on. It was hard and scary but I didn't let these emotions show very often so people thought it didn't bother me. Only now two years later does my family know how scared and how much I struggled with it. My menopause was surgically induced as well and I'm irritated at the little things and am forgetful so tend to repeat saying the same stuff to the same people....oh well, lol
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One of my biggest issues in the months following my diagnosis was getting people to listen to me, in hindsight very few individuals made an effort to acknowledge my perspective. My experience as a cancer patient is that it can be difficult to find a sympathetic ear or someone who is empathetic. Even family members often seemed unwilling to let me open up about my emotions, fears, and concerns.
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Yes me too! I find that I feel like an island a lot these days. Everybody mindlessly chitty chatting about things that are so unimportant to me. Even the ppl closest to me -I dont feel understand a word I say. But when it comes to talking about my cancer , my treatment,my experiences,my doctors etc etc etc I feel like I want to talk for hours. When I'm around other ppl who have or have had cancer I feel a huge relief because I know I'm around ppl to truly understand me...even if I'm making no sense at all LOL
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@ Jackie I hope that an online community like this one can help with support and understanding. It's so hard for most people to understand what a person with cancer is going through I think.0
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After my parents died of cancer within 6 months of each other, I found it very difficult to connect with certain friends. I had just gone through a very long period of palliative care for them, followed by the final stages. I could not relate to what my friends were talking about in their lives - what I felt at the time were superficial concerns, and I was experiencing such depth and complexity in life/death. I did withdraw from some of those friends for a time, but I also came to understand that everyone's experience in life is so different and that I couldn't expect them to understand what I'd been through.0
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@JaneWest - I feel like major life events like that can often create a feeling of a divide, simply because it shifts the way that you look at the world around you. I was only 24 when I was diagnosed, a time when most of my peers were busy hitting bars with their friends, living it up, finishing University, etc. It definitely put me in a different 'place' in life.2
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My cancer is incurable and that scares the crap out of me. There's a lot of anxiety that goes with my diagnosis. I have a few people I can be honest with, but some people don't want to hear about how I really feel, That's difficult. I don't want to talk about my cancer all the time, but sometimes I need to let it out. It's a very lonely feeling.3
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I can see my situation in many of the comments above. I don't mind talking about my cancer. It's part of my life story and there's nothing I can do to change that. I was diagnosed, I went through treatment and I'm here today - I believe a stronger person for the experience. If I can help one person by talking about my experiences, it's worth it to be a chatterbox about ovarian cancer. This forum will be a great place for us to "vent" and share and talk to others who actually know what we have gone through and how we feel. I'm glad to see so many people taking part in OVdialogue!
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I think when you have been through cancer or any life altering illness, you no longer care about trivial things and mindless chit chat. Who cares if somebody got a bad hair cut when you've lost your hair due to poison being put in your body to try and save your life? I just think it gives you a different outlook on what's important. And I think we need to vent...glad this site is here.2
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Hi everyone - Yes, this is the place to be for support and pleased so many are participating in OVdialogue!
I'm glad we can share the comments, experiences and emotional connections we have with others.
And I can really relate to all of your comments.
For those that have posted, I'm curious - has any of this changed for you over time?
@Adnamarama, how are you doing now as your surgery was a few months ago?
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My situation was a bit complicated. Two weeks after I was diagnosed, my aunt was diagnosed with stage 4 liver cancer and died 6 weeks later. I opted to keep my diagnosis private (mom, sister and best friend only) at least until I seen the oncologist. When I was told I did not need chemo or radiation, I decided to wait a bit longer before I started telling extended family and other close friends. I also live in a very small town where everyone knows everyone and privacy is hard to come by. I somehow managed to keep my health out of the gossip mill. Whenever someone around here gets sick, everyone talks about it, and yes, mostly it's out of concern, but I just didn't want that. I didn't want the cancer looks when I walked down the street. The kicker is, I am totally guilty of all of this!0
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I was diagnosed with stage 3 in June last year (2017) while my husband was in hospital recovering from a stroke that affected his speech—which happened while he was in surgery
to prepare him for another operation to fix an aortic aneurysm.
I started chemo in July, had surgery in September, and more chemo starting in October. The worst part of my treatment was the aftermath of the surgery. If I had known how painful it would be, I don’t think I would have had it. However, I worried more about my husband’s difficulties with learning to speak again than my own health. That sounds as if I’m a down-trodden woman, but I’m definitely not. His inability to speak coherently was frustrating for both of us and we were sometimes unable to give one another the support we each needed.
I stopped chemo before my last (6th) cycle in November because the tumour markers had dropped almost to normal and I was sick of being so tired...6 months of spending most of my days lying down was way too much even though I’m a low-energy person at the best of times.
My oncologist has told me that the cancer will probably be back within six to 18 months but I’m not worried. Now that I’m 6 weeks post-chemo I feel good again.
I don’t mind talking about my cancer with family, friends, and anyone who asks. Cancer is a fact of life and everyone knows someone who has, or has had it.
I’m not afraid of dying and if the cancer recurs, I won’t have any more chemo. I just want to be pain-free at the end.0 -
Hi @terrylee ... yes, during the times we live in now, it is sometimes hard to keep issues private. I hope you are able to find the support you need.
@Kitty.. I'm sorry to hear you were dealing with your husband's recovery and your situation at the same time. You are a few months post chemo. Is the pain less for you now and how are you feeling today? Has it gotten any easier for you in dealing with your husband's recovery now that you are no longer having the chemo? The chemo treatment and the after effects really seemed to fatigue me. Each day just seemed to get better and I hope this has been the case for you also.
Thank you all for sharing your thoughts. It is very difficult to find the light sometimes.... Someone recently wrote about the DRs having a "cloudy crystal ball" - I'm going with that reference. Like Margaret in the By your Side book mentioned - "Don't dwell on or let statistics make you come to a conclusion about your prognosis. You are not a statistic but an individual".
Seems the medical community may be listening as they are making advances everyday and pushing for personalized treatment.0 -
@Flowergirl
Actually, I wrote that post in the summer, so it’s been a year since my first surgery and cancer diagnosis (Dec 21, 2016) and it will be a year on Feb 20 that I had my second surgery (complete hysterectomy) and since I’ve been cancer free. It was like getting on a roller coaster and then getting off.0 -
Hi @Adnamarama - nice to hear you are doing well. Thank you for sharing your story!0
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Thanks for your message @Flowergirl
I am feeling better; just in the last couple of weeks I feel like my old self—the fatigue is pretty much gone although I do still get tired if I do too much.
I’m wondering if anyone has been told that the cancer will probably be back within 6 to 18 months. I know it’s not written in stone, but that’s what I was told.
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Hello @Kitty.. good to hear you are feeling better. Yes, it is good to pace your self and find what works for you.
Someone mentioned before, those DRs only have a "cloudy crystal ball"- we can all see the stats, and we remember we are not stats, we are individuals.
Hoping you are doing well this evening.
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Thanks, @Flowergirl, I am feeling well. I did a bit of volunteer work at the local Diabetes office today and I’ll be re-training in the hospital gift shop tomorrow. Getting out and feeling useful again is going to be a great help, I’m sure.
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That is good news - I'm glad to hear you are able to get out and about.
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