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  • 1.  Seeking advise and counsel from Teal Sisters for those newly diagnosed

    Posted 2 days ago

    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 you 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



  • 2.  RE: Seeking advise and counsel from Teal Sisters for those newly diagnosed

    Posted yesterday

    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). 




  • 3.  RE: Seeking advise and counsel from Teal Sisters for those newly diagnosed

    Posted 19 hours ago

    @LeslieA great suggestions and resources. Thank you!

    #Treatmentandsideeffects #Healthandwellness




  • 4.  RE: Seeking advise and counsel from Teal Sisters for those newly diagnosed

    Posted 23 hours ago
    For those new to this journey, I won't say " welcome" but just know you aren't alone. There is a fantastic group of fellow travelers ready to share what they know of the practical and emotional effects of this cancer.
    After 3 years, i agree with @ Alwayslearning that keeping a journal and list of questions is valuable. I find my memory to be frail at times, I guess due to both emotional and chemical effects. Your time with your oncologist personally will be limited, so taking your pre- thought questions is key. 
    Exercise is valuable in actually fighting fatigue, surprise, surprise ! Rest is important too. Pushing through exhaustion to keep up with the world makes me grumpy. ( just ask my husband !) The phrase " you are in a marathon, not a sprint" rings true.
    Find people to talk to. The emotions are challenging. I am very lucky to have an oncologist who is perceptive and experienced with all the stages of the journey and the fear and frustrations that go along with it. I have been frustrated with him at times too, but its my lack of organizing and facing tough questions along with his metered time allowance. He is quite eloquent in his analogies as he tries to explain the circumstances of cancer. 
    Some like to stay in hiding with their health. I am pretty open, as I need people to understand where I am at, to gather the support I need. You will find some of your contacts very supportive and open to tough conversations and some will.shy away because they just can't. 
    As you settle into this battle, you will find lots of ups and downs. It's really important to not lose sight of the small joys that still exist around you. Living your best life is so important. That may be a simple, quiet one or when you are able get out and visit and explore, traveling as far as you are able to.
    The " gift" of this journey is knowing full well that life has a limit, and seeing that you must use your time well. 
    My greatest fear is suffering, and I asked my Dr yesterday about MAid. He said it is the best insurance against suffering which I personally found comforting. I know some of you will find the concept distasteful for a variety of reasons, but at least we do have yet another option.
    As we have learned you can get through experiences you never dreamed possible. Reflecting on that is what makes us Teal Warriors. Live large and live small. You are in charge of how you journey, even if you didn't book this trip !!
    Sending positive vibes to all !




    Sent from my Bell Samsung device over Canada's largest network.






  • 5.  RE: Seeking advise and counsel from Teal Sisters for those newly diagnosed

    Posted 19 hours ago

    @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




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