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]).
Fears for the worst
HI, I am hoping to get some support on how to stay positive. I have a consult date on May 16 and I am having some hard days where I find myself fearing the worst outcomes.
I worry about every little pain I feel that the cancer has spread. My gyno shared that my CT scan and ultrasounds were positive in that, although my tumour is large, grapefruit size, there was no other spread noted in those tests. I am trying to hold on to that hope, but my fears always lead me to worry about spread. It is so hard to wait thru this time prior to surgery which still will be a number of weeks away. How did you all find you coped? Anything help to stay sane and find some enjoyment for parts of those early days??
I worry about every little pain I feel that the cancer has spread. My gyno shared that my CT scan and ultrasounds were positive in that, although my tumour is large, grapefruit size, there was no other spread noted in those tests. I am trying to hold on to that hope, but my fears always lead me to worry about spread. It is so hard to wait thru this time prior to surgery which still will be a number of weeks away. How did you all find you coped? Anything help to stay sane and find some enjoyment for parts of those early days??
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@KikiBear2 it's quite normal and natural to have the anxiety that you're experiencing. It's human nature to try to close a gap in knowledge, usually reverting to the most negative thoughts, whenever a challenge arises. You have some positive feedback from your oncologist. You have a consult in 4 days that will help close the gap in knowing where you stand. Just try to stay busy with anything that can focus you elsewhere. I know that's easy to say but over time you'll become more proficient. Things that work for me:
Meditation - I find once a day, usually at the same time, I get to a comfortable place and meditate for at least 15 minutes. For me, it helps clear my head of negative thoughts.
Mindfulness - Somewhat similar to meditation. Helps keep your focus on the here and now and stop projecting out beyond that. Lots of info on the internet on the subject.
Hobbies that are easy to pick up and do at a whim....one of my friends bought a very complicated and huge puzzle, commandeered the dining room table so it was always set up and ready for her. Lots of other hobbies do the same. Or maybe time to start a new hobby...something that interests you but you haven't tried before.
Stay connected to the survivor stories here or on the OCC website. Read a few about survival to give you some hope and help with perspective.
When you put your mind to it you'll find lots of things you can do that will shift your focus, even temporarily. And, of course, continue to access OVdialogue and reach out with whatever needs you have. We won't let you be alone in this gal. And I can guarantee that while it may seem terrifying and overwhelming right now, you will find you are far stronger and more resilient than you'd ever expect.0 -
thanks so much, I like the idea of starting a new hobby, was thinking about starting a veggie garden, a small one! Your response is so appreciated! Distraction is certainly my friend now! I have been finding that in my dark moments one of my friends just happens to call or I will reach out to someone too, it does help a lot. I am looking forward to having that grapefruit taken out!!! I have named her Penelope, from the Brooklyn 99 episode where they name their mumps! I didnt want to give her a powerful villain's name, so settled on Penelope as per the episode. Good to try to keep a sense of humour! Hopefully she will be evicted soon!!0
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@KikiBear2 yes, do keep your sense of humour. Mine has gotten me through some really trying times. And as for the garden, what a great idea. Between studying a bit on the subject, and then planting and nurturing your garden you'll have little time left to worry about the 'little' things as your journey begins and continues.
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For the first time this morning I am feeling shame and blame, how could I not have noticed this grapefruit size tumour in me???? Why did I not check it out sooner? How did I just so easily justify my bloating and thinking I was just getting fatter as I tend to put weight on only on my abdomen.? If I would have checked into it, months ago, it wouldnt be so big now!
I am sure these feelings are common and certainly not helpful at this point, but guess I need to sort this through.0 -
@KikiBear2 most of us, probably all, feel some sort of blame for having this disease or not having caught it earlier. How you're feeling is natural and normal. But don't let it overwhelm you. Some of us are able to move past those thoughts quickly, others find it hard not to dwell on what should have been and taking them from focusing on the future.
I recommend to most survivors that if those 'dark' thoughts start to take over your days, then reach out for some professional help. Most cancer centres have a social work department and the support of a social worker is usually free. I did when I recurred and found myself feeling like I'd failed myself and my family among other things. Julia, my social worker, and I have continued our relationship for five years now and I credit her support for bringing out the best in my own resilience and strength and help with keeping balance in my perspective.
But as for not feeling the tumour, I didn't either. My primary tumour was on my right ovary, the size of a very large grapefruit too. I would have expected it to have been easily detected, but when I thought long and hard about it, my own GP with whom I had annual check ups and who automatically palpitated that area didn't feel it either. I have no answer for why but many of our Sisters express the same issue. Regardless, don't waste precious time beating yourself up about why or trying to place blame. It serves no purpose but to increase anxiety. Keep focus on the future and getting well.0 -
Thank you very very much for this. I will ask about a social worker when at my consult on Monday. Great idea.1
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Had my consult and I think it went well, I feel somewhat relieved in that they seem to feel that the tumour is self contained and the ovary tumour is free and not attached which will make it easier to get out. Thanks to your suggestion, I will have a social worker call me and work with me thru this! No surgery date yet, sometime in next 4-6 weeks, on a list. More waiting , which I am learning is very much a shared experience for us all!!! Feel grateful for a good consult, surgery plan and then chemo to follow likely as a precaution. Also, it now feels good to be connected with the team at Juravinsky.1
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hello again, well I have my surgery finally scheduled for June 20 and I find that I am once again feeling almost like the first two weeks after i was first told I have ovarian cancer! Fear is strong again and I am trying to hold on to any positives but find I am worrying so much about waking up after the surgery to be told the cancer is very bad and I am having fears of that. My husband is trying to keep me focused on my consult and the surgeon's words at that time letting us know they haven't seen any spread, it seems to be contained in the very large tumour which she said I will feel so much better after it is removed! At times I feel brave and then, just as quickly, feel terrified.
I have just tried to connect with wellwood to get a mentor and look forward to that. Just reaching out for some words of wisdom and comfort at this time in the journey!0 -
@KikiBear2
It is wonderful news that you have a surgery date. Anxiety can get the best of us even when we think we have it under control. I feel that the "not knowing" is the most difficult part and adds to our anxieties. Your husband sounds like he is a great support for you as well and hold on to that. It is okay to go through any emotions you are feeling as well. Talking to a mentor at Wellwood will help you as well. As Fearless has mentioned, hobbies and staying busy will help as well. Think about things that you may need after surgery and it may help to keep you busy as well. Journaling can also help at times like this. Of course, we are all here for you anytime you want to reach out.
My greatest fear for my own surgery was not knowing if I would end up with an ostomy or not, thankfully I did not.
Hope some of this helps!!!0 -
yes, thanks, it also just seems to help to put my fears out there and down in writing, so I can see how the journaling can help and need to try that. Your example of your fear not turning out is a good one to hold on to! I know I often fear the worst instead of focussing on a better outcome and that this robs me of the joy I can feel in the moment. To hear your experience is helpful. Thank you.0
