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Teal Sisters,

We tend to all be at different stages of our cancer journey's and no-one path is the same. There is one thing however that we all share - that we had an initial diagnosis. Whether it was ovarian or endometrial cancer, for so many of us the start came as a complete surprise. We were shocked. We were scared. We were overwhelmed with new terms and treatments. We at times felt lost and alone. Fortunately we found Ovarian Cancer Canada (OCC) and OVdialogue. 

For those of us who are a bit further into our journey I have an ask. Let's help our newly diagnosed sisters. If you can, think back to when you were first diagnosed. What questions did you ask? What tips do you have from the start of your journey that would be helpful for those who are where we used to be? You may not have thought to ask then however if you reflect back, what advise and counsel can you provide now upon reflection.

I'll start...

1. Keep track of your questions - get a journal or notebook or something where you can capture all your questions. When you think of it, write it down. You can then review it in advance of your meeting and make sure you capture everything you need to ask. Often oncologist and/or specialist appointments are lean on time so you want to make sure you are prepared to get your voice heard and answers to your questions.
2. Track your Chemotherapy Side Effects - if you have chemotherapy, understand what 'cocktails' are being used. What are the known side effects? Keep track of your symptoms following each infusion. You will be asked by your oncology team for feedback. Often we can't remember what happened yesterday let alone the first day of our chemo. So, keep track of everything you feel - both emotionally and physically. This will also help with each following infusion as you will start to find trends e.g., your face got red on day 2 and 3 and then went away. I've attached samples of two documents outlining my side effects post first and second infusion. I don't expect everyone to be as anal as me however this is what worked for me and made it easy for my discussions with my oncology team.
3. Review the Ovarian Cancer Canada website - this site is an excellent resource. There's a great booklet with so much information. There are videos. There are opportunities to connect with other women. Make sure you spend a bit of time here. It can also help to generate questions. OCC Support Education

Okay Teal Sisters...over to you for some additional input to help those who are at the start of this journey. Thank in advance.

#Supportandencouragement

Attachment(s)

Chemo First round March Side Effects Overview.pdf   54 KB 1 version

Chemo Second round April Side Effects Overview.pdf   56 KB 1 version

Thanks for starting this off Alwayslearning with some great tips. I also kept a log of my symptoms during treatments because it helped me understand the typical patterns of when I dipped into the unwell period and when I started feeling better (usually day 9 after an infusion). I accepted that the unwell period was temporary each time which buoyed my spirits.

For those who find books on this subject helpful, there are two that helped me cope better and understand the illness journey. "Coping with Cancer" by Elizabeth Cohn Stuntz and Marsha Linehan was an excellent book about managing emotions and balancing uncertainty with hope. The ideas provided helped me calm down and feel less stressed. 
Another superb book written by doctors who work with patients with serious illnesses is called, "Hope for the Best Plan for the Rest" by Dr. Sammy Winemaker and Dr. Hsien Seow. They provide questions to ask your doctors at every stage of illness beginning with the diagnosis and right through to post-treatment or if terminal. (I was so overwhelmed with my situation that I didn't even know what to ask, but this book helped me clarify what I wanted/needed to know). 

@LeslieA great suggestions and resources. Thank you!

#Treatmentandsideeffects #Healthandwellness

Did you know? Ovarian Cancer Canada hosted a webinar with Dr. Sammy Winemaker and Dr. Hsien Seow. 

You can see the recording of this webinar (click here) where they share tips for navigating a cancer diagnosis. 

@lbarr72 what wonderful insights and counsel! Your thoughts regarding some people being open to your openness while others "just can't" does ring true. Interestingly through my journey I "lost" some folks who just didn't know how to interact with me, however I also "found" more including this group.

You are also so correct...we can get through more than we ever anticipated! Also, we are definitely in charge or our journey's and being your own advocate is so very important.

#Treatmentandsideeffects #Healthandwellness

I wanted to post another thought to this thread which tends to be a common theme in multiple across discussions. For those newly diagnosed, you may feel very overwhelmed. That is understandable. You are likely, and will continue to process a lot of information. If however there is one thing you can remember to always focus on is to be your own self advocate. Don't be afraid to ask questions. Don't just 'assume'. Don't walk away not understanding. Don't be afraid to voice your opinion. This is your battle. This is your journey. You ultimately own your pathway. Make sure your voice is heard especially to your medical team.

#Healthandwellness #Resources

@LeslieA sage words of wisdom as always.😊 Agreed that an appointment support person can be extremely helpful as sometimes your brain can't process it all.

If folks haven't already sought a copy, OCC's, "Understanding Ovarian Cancer: A Comprehensive Patient Guide" is broken down in digestible sections, many with some great questions to consider or ask. It also have a great glossary of terms. Many were so foreign to me that it was helpful to find them in a credible source. The guide is available in PDF and hardcopy. Here's a link to where you can order a copy: Understanding Ovarian Cancer - A Comprehensive Patient Guide

Your suggestion on use of Chat GPT (AI) is a very good one too. I'm going to give that a whirl. I'm a few weeks away from my two year mark of Olaparib which means it's going to end. I'm nervous. I've got questions prepared but AI may be helpful to ensure I've got all the 'right' questions.

#OvarianCancer101 #Resources #

This is such a great topic! When first diagnosed there are SO many emotions and the feeling of being lost. Lots of great suggestions listed so far!!

1. I agree with a journal to keep track of questions. My husband and I shared this journal so we could each write them down in one spot, and then in the beginning he came to every appointment with me. I listened and asked what I could remember and he wrote down the answers and asked the rest. 
2. Number 1 being said, take someone with you to your appointments. Your support person is there to help you, advocate for you, keep track of things that are said, etc.
3. Don't suffer through a side effect!! Call your medical team and let them know what is going on. There are things that they may suggest to help (nausea, any kind of pain, mouth sores, diarrhea, constipation, rashes, etc). If something they suggest or prescribe isn't working, call and let them know!
4. Find reputable websites to get your information from (Ovarian Cancer Canada, your local cancer agency). You could easily go down a rabbit hole with sites that are not reputable and hold no factual information.

No question is ever a dumb question- if you're thinking it, so is someone else or someone else has experienced it as well, so please post it!!