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Hi brendalee,

   lbarr72 and I will be at the patient day on May 28th. If anyone else is coming, please say as it would be great to see you in person. My suggestion for us meeting is to text each other once we are there and arrange a spot to find each other. I don't know what to expect regarding crowd size, but we should be able to find each other via our phones. 

LeslieA 

Okay Brenda, I have your number.

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@LeslieA @brendalee @lbarr72 so looking forward to hearing all about your conference experience!!!

#OCCinfoandupdates

Before the glow fades away, I want to share some thoughts about the conference experience, which was so positive and heart-warming. Despite what we all have been through and continue to go through, there are many researchers working diligently on early detection, new treatment protocols, trials, medications, patient support, and perhaps one day, a cure. A regular attendee told me that out of the various conferences people attend, the ovarian cancer conference is unique in its strong sense of community; clinicians caring deeply, patients sharing openly, and scientists working very hard to solve this complex disease. There were presenters from all over the world such as Britain, the Netherlands, Australia, France, and the US, all sharing their knowledge with each other.  

The Patient Day was very special. There is something profoundly moving about sitting in a room with 50 other ov cancer survivors, who have life-altering stories of survival. The agenda provided great information on pelvic health & sexuality, nutrition, mental health support, & staying healthy. My favorite presenter was Golda Arthur, podcaster of Overlooked: Women's health can't wait. Inspired by her mother's struggle with ov cancer, Golda's podcasts deal with this and other health-related matters. I am definitely going to check out her podcast series. As an exercise, she invited us to quickly write down a 20- line story about how we were impacted by cancer, but not write about the diagnosis. This reflective exercise made me realize all the stories that live inside me; some of them sorrowful but some humorous. Finally, she encouraged us to document these moments from our lives via recordings on our phone as an oral legacy for others to enjoy. Something to think about. 

Another important matter that came up in some presentations was the impact of this disease on patients' mental and emotional health. This area is often overlooked by medical teams and yet, is an area that needs to be addressed in the broader scheme of things through other supports. As gynecologist Lesa Dawson stated, women often show symptoms of PTSD after diagnosis, treatment, and post-treatment (fear of recurrence). One of the non-medical interventions emphasized in these talks was the amazing effects of exercise, improving mental, emotional and physical health. 

Inspirehealth.ca is a resource for all Canadian women. They have a holistic program (online and in person) that tends to physical, emotional, mental health, and nutritional support to name a few. There are also cancer doctors available to confer with. It is a resource that I have used many times and has helped me immensely. 

Here are a couple of Teal Sisters that I had face-to-face meetings with and it was wonderful! It was so great to see these women in person. Unfortunately I missed seeing Melissa and Florence. 

Best, 
LeslieA 

@LeslieA look at those beautiful faces. I'm so glad you were able to meet up with fellow Teal OVd Sisters 💙

Thank you for sharing your conference experience. It does give me hope knowing how many people are focused on this disease. The cure is definitely out there. I will have to check out Golda Arthur's podcast. It sounds very interesting. I know you are likely still processing all that you learned however if you have any quick insights or tips you can share in the areas you mentioned on pelvic health & sexuality, nutrition, mental health support, & staying healthy that would be great.

Out of curiosity, were there any standouts for you relative to new treatment protocols, trials, and medications? I'd love to know what is being focused on. Also, were you there for any updates on what's happening with funding for Elahere treatments in Canada?

Thank you as well for the reminder of Inspire Health as a support resource.

I'm so thrilled you were able to attend. I have no doubt it was both emotional and inspiring at the same time.

#OCCinfoandupdates

@LeslieA thank you for the continued information. I would agree about Survivorship although so many people are focused on being blindsided by the diagnosis that I'm sure that 'term' doesn't really come to mind. Your reminder of using Inspire Health and Wellspring are so important. I would add "Look Good, Feel Better" as well. All organizations focused on total health. 

Looking forward to your learnings on pelvic health/sexuality. It is an area that from personal experience, is often overlooked and or not talked about enough. Perhaps it's the topic itself which some find embarrassing to discuss. Sometimes it's the lack of understanding of what falls into the category. I had my appointment at the Sexual Health Clinic at PMH in Toronto yesterday. It took a year between appointments to get seen!! It is definitely an under resourced area. I intend to do a post this week on my learnings.

Thank you for continuing to share!! It is so appreciated.

#Healthandwellness

Pelvic floor health/sexuality was also an important presentation on Patient Day, as it is an area that affects many of us after surgery, radiation or chemo and yet is rarely focused on as part of post-treatment care. Treatments such as chemo, radiation and surgery can weaken and damage the tissues or tighten the muscles in the pelvic floor, causing symptoms such as pain, leakage, or tightness. The vaginal canal can become shorter and tighter, making intercourse painful. Despite these challenges, there are interventions that can help. 

It is best to get an assessment from an oncology-trained physiotherapist, who will understand the issues related to cancer after-effects. In the case of pain or tightness in that area, a physio might work with the woman to relax the pelvic floor muscles through stretches and breath work. It is re-teaching the body to relax. Vaginal dilators or wands can also be used to gently and slowly open the area up again. These are apparently available on-line and can discretely be delivered to a home address. Some physio offices will order these devices for clients, if required.  Creams can be applied to soften and moisten the tissues externally and estrogen tablets or cream can be administered inside the vagina to improve the tissues. There is no danger of estrogen spreading throughout the body with these applications apparently.

LeslieA  

@brendalee thank you so much for sharing your conference insights and also for taking the time when you are still on vacation. I'm sorry you weren't feeling great and that the conference caused negativity to surface. I can only imagine how emotional it was and that it heightened recurrence fears. I know it's a fear that is common for so many of us however being in a 'space' that is discussing and profiling people's journey's and current research, would no doubt be slightly overwhelming and contributory. I know it's hard but try not to focus on stats and numbers. Each of us are so much more than the 'statistics' and I always like to remind myself that our stories can be the ones that change those stats in a positive way!

Without being a researcher or clinician I'm sure all the information was like listening to a foreign language. My soon to be daughter in law is a PhD candidate in Molecular Science and her area of study is Ovarian Cancer (serendipity). She was at the OCC conference when it was in Halifax and was part of the "poster" research presentations (she actually won an award). I've told her for the next conference I'm dragging her along with me all expenses paid so she can be my science interpreter.😁

It is great to know that there is focused research for OVC and that there is progress. We can only hope that the progress happens faster and faster.

I hope you enjoy the rest of your vacation!

#OCCinfoandupdates #Clinicaltrialsandresearch

Thank you for sharing @lbarr72 

This disease impacts us across the generational divide doesn't it. It's ruthless and shameless. I'm sure the impact stories that were shared were very emotional for everyone. I agree that some but not all have great support in their medical team. I'm not sure if they had empathy when they started and have just gotten harden or perhaps started out that way. Seems odd to want to be patient focused but not have the empathy that a patient needs.

I agree as well that time is our enemy. We can only hope that breakthroughs move faster.

#OCCinfoandupdates

@LeslieA,@brendalee,@lbarr72,

thank you for sharing your experience at the conference.  I'm sure it was definitely very emotional at times sitting in the rooms with other OC sisters and families.  I think that's partly why I didn't go as I feel like I would be too emotional.  I seem to cry at the drop of a hat these days.  Can't wait to hear more about what everyone learned from the conference.🙏🏻🫂🩵