recently diagnosed and terrified

KikiBear2

Looking for some words of encouragement to keep me going as I anxiously await my first consult and then surgery. My referral went in to a cancer centre two weeks ago and I have not yet had a call, learned they are reveiwing my case.  My mind goes to all the dark places and it is hard to keep a good focus and hold on to hope.  

Fearless_Moderator

@KikiBear2 I'm so glad you found our community and welcome, although wish I could be welcoming you for happier reasons.
I'm so sorry for the anxiety you're feeling.  I can tell you that if you asked 100 of us, at least 99 would agree that one of the toughest parts of our journey is the waiting...for scans, for diagnoses, for treatments, for results.  And more since Covid given our medical systems are stretched thinner than ever but with more women needing support thanks to improved awareness of the signs of this disease. 

Try to be patient.  Think of it this way.  'Reviewing" your case usually means you're being assessed by more than 1 specialist the field, and that combined view with differing sub specialties helps to ensure the right diagnosis, the best oncologist to place you with, and the best treatment plan should one be required.  That takes time, which for our wonderful medical professionals doesn't seem long at all, but for us it feels every day left wondering means a lifetime. And if a diagnosis is confirmed you are then likely to find your treatment plan moving like the speed of lightning to get you from point A to point B and into recovery.  

The above said, this is also an era where we are all learning to become better advocates for what we, as individuals need.  Some of us can handle things emotionally very stoically.  Others need much more hand holding. Whatever the case with you, don't ever feel uncomfortable about checking in for updates, or asking if something can be accelerated.  You do have a right to action and answers. 

If you haven't already, order the booklet By Your Side from Ovarian Cancer Canada. It's an extremely helpful toolkit to support you from diagnosis through first-line treatment if you are diagnosed with OVC.  And use the OCC website as a very reliable information resource. Their site contains a wealth of information from survivor stories, to videos of presentations on various topics of interest to the latest information on clinical trials and new treatments.  And, of course, use OVdialogue and our community to ask questions, look for stories, and just a safe place to lean on during those times when you need someone to vent to or cry to.  We've all been there, so never feel uncomfortable about how you're feeling or for asking for help.  I will guarantee that one of our Sisters here walk alone.  We are there for you for whatever you need from us.  

On a good note, I can tell you that I am now in my sixth year of treatment from an original prognosis of three years once my cancer had the misfortune to recur.  In that time I have met so many women, many in advanced stage OVC, who are still in complete remission following first-line treatment, and many, like me, who've had their lives significantly extended in both quantity and quality thanks to so much research and development of new treatments over just the past few years.  In fact I write this reply having just returned home from chemo, cycle 7 in my 4th series of treatment since recurrence close to two years after my initial treatment was completed.  I've had benefit of two years in clinical trial using oral medication, two series of platinum based chemo and now, having become platinum resistant, a very successful series of Caelyx as the chemo and a newer drug called Avastin that is an immunotherapy.  And through all that I'm still alive and kicking and looking forward to and planning for a wonderful future with my family.  Not the future I had envisioned before diagnosis, just a different one. As they say, when you're handed lemons, make lemonade.  So all through your journey, whether it go straight to recovery or, like me, be full of twists and turns and highs and lows, there is much to be hopeful for.  

Please keep us posted on how you're doing and reach out anytime if there is anything you need...to the community generally or to me directly as the Moderator of OVd.  And think about joining our regular Teal Thursday online live chats.  You need only sign in and click on the the topic Teal Thursdays....on the home page to join the chat.  It starts at 1pm ET and goes for about an hour.  Some gals are there every week, others join in as needed, and since the chat is online, those who can't join can always review the conversation at their leisure.  Love to see you there any time it suits you.

Good luck. Thoughts and prayers from all of us to you.
  

KikiBear2

thank you so much for this response, this is what I needed to hear as I had a day full of panic attacks! Just to see that you are still planning for a future and have done so well is super encouraging!!! I will take your advice and will try to join in on the Thursday chat! I have ordered the By Your Side and have looked thru it, asked for a copy to be mailed as I would like to use it as part of a journal/ keeping track of important information.  It is so hard at this point to see beyond all the dark and fear.

KikiBear2

i couldnt figure out how to join the chat, sorry I missed it

Fearless_Moderator

@KikiBear2 I saw you were on so assumed you'd signed in to OVd and then clicked on the Discussion Thread...Teal Thursdays. That being the case, all you needed to do was type into a comment box with any question or subject you were interested in sharing with the group.  If you tried to comment and it didn't work it was because you weren't signed into OVd.  Anyone can follow the conversations but only members signed in to the overall site, like you did to post your question above, can comment.  Hope you'll try again next week and if still having problems let me know.  Happy to help you navigate the site any time you need assistance.  

KikiBear2

oh okay, so I actually was on, I didnt know and will def try again and then post a question

Fearless_Moderator

@KikiBear2 wonderful.  We'll look forward to  having you join us this coming week.

KikiBear2

I am having such a difficult time with the waiting, still havent had my consult scheduled or any call at all, feel like I am becoming depressed which is so not like me at all, have had so many tears and lots of fears. Have def had some good moments within these weeks, times when I am learning about myself and feeling blessed by so many supportive people in my life.  Actually just writing this has been helpful.... any tips on trying to stay positively focussed?

Bobby

See your comment and if you are like me, my mind goes to dark place all of the time.  i am going to a CT tonight to see if my first recurrence is happening. Terrified although everyone just keeps saying one day at a time...but if you are a planner, it feels like life's prospects have been snatched.  COVID makes it hard because there is no peer group setting so all virtual and yes is a very lonely process. The moderator of this site does a very good job of giving all hope.   Keep pressing nurse or reception as bet you can

KikiBear2

thank you , hey, all the best on your CT!!!