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Waiting and wondering, is this the hardest part?

Waiting and wondering, is this the hardest part?

Posted by Callan on Nov 3, 2019 5:07 pm

Hi.  I’m new here.  In SK, mother of two beautiful children, wife, and a nurse....  which I think has been both positive and negative for this initial experience.  Positive because I can recognize symptoms and hopefully be early in getting a diagnosis.  Negative because I feel like I’ve been obsessing over every symptom and it’s possible meaning. 

My story so far...   in early September I had pain in my neck that was very typical of lymph node pain, I expected I had a cold or something coming on....yet I never got any cold symptoms and the pain was quite strong. I went to my doctor fairly quickly, we did blood work (all normal) but booked for a ultrasound to make sure nothing more “sinister” was up....  hearing her use that word was the start of a negative obsession for me.  

The ultrasound showed nodes on my thyroid...apparently a common occurrence, but they still wanted one biopsied to be sure.   Waiting for the initial results of the ultrasound and then the results of the biopsy was torturous but results came back benign.    I still have my neck pain and our step is to have a nasal endoscopy....which is booked for December.  It seems so far away.  And I sometimes feel like the thyroid issues was a distraction to missing something more serious. 

In the mean time, I have returned to my doctor because I’m anxious and unsettled and feel like pain is worsening...   and so tomorrow we are doing a CT scan of my neck and chest.  A different view than the US can show.  

Minute to minute is a roller coaster of emotion.... from thinking about what will happen to my family after I die to hope in that if this is cancer and early I can fight and be strong to hope that this is all blown out of proportion and I’ll find out that a simple explainable fixable reason is causing the pain.  

I know now what I would say to someone else if they were my patient....   it’s hard to take your own advice.   I’ve already started to positively focus on diet and when I catch my mind spiralling I try to stop and be mindful.  This not knowing though is much harder than I ever imagined.  

Thanks for letting me divulge here....   putting it down in words is a bit cathartic too. 

Re: Waiting and wondering, is this the hardest part?

Posted by Kims1961 on Nov 3, 2019 8:33 pm

Callan‍   Welcome and so glad you posted!  You hit the nail on the head...so they say..the waiting and waiting...the limbo?  Do I have cancer or not?  So many thoughts ran through my head....

The good news is that you've come to the right place - this is a great place to vent/share/ask questions.  I would say many of us would agree that the waiting is so hard - that we actually dread weekends as there goes another few days that you won't get "that call"....Scanxiety - is what some people call it...I call it hell!

Some advice that I got when I was waiting for the results of my biopsy for breast cancer was that:
1. It's ok to go to those "dark places" - it can give you a sense of control as you try to work out your plans - just don't stay there.  Thinking of the worst case scenario can help to protect us.  If you find this is interfering with your day to day activities though, having a social worker or EAP person - can help.
2. Distraction - keep busy - stay active - do tasks that keep the brain engaged - like cleaning out the closet - the junk drawer - the kids toys - it can give your brain a little break from the worry
3. Grounding - sometimes I need to refocus - redirect my thinking - you can do this by connecting with your senses - https://copingskillsforkids.com/blog/2016/4/27/coping-skill-spotlight-5-4-3-2-1-grounding-technique

Hope tonight is going better.  Keep us posted on how you're doing.  KIm
Her2+, ER+ Bilateral mastectomy in 2017, followed by chemo and radiation. Mack and Hannah's mom

Re: Waiting and wondering, is this the hardest part?

Posted by Wendy Tea on Nov 3, 2019 10:02 pm

Hi Callan‍ , welcome! What great advice from Kims1961‍ . I hear you about being in the medical field, or even understanding what might be happening and the fears that go with that.

I found that once you are on the cancer conveyor belt, everything happens quickly even when dates are weeks away. As you know there are so many things that have to happen first. Doctors visits,  bloodwork, chest xrays, etc etc. I was kept so busy the surgery date arrived very quickly even though from my first test to surgery was 2 months.

The good news is the medical system in most of Canada is truly amazing. Hang in there and watch what a wonderful profession you are part of.

Best wishes and please stay in touch.
Wendy Tea 
Healing takes time and opportunity. Wendy Tea

Re: Waiting and wondering, is this the hardest part?

Posted by Peanut on Nov 4, 2019 12:37 am

Callan‍ I can definitely relate to what you are going through.  I’m also an RN and while cancer has never been my speciality I feel like I know too much.  I’m about two months into my journey with breast cancer and a month into chemo.  My brain has gone in all those directions that yours did.  I still have some days where I go there but I don’t let myself stay there too long.  I remind myself when I hear a bad story that everyone’s journey is different.  I’ve also heard some amazing stories so I know it is possible to come out of a bad diagnosis with lots of hope.  I read a post on here (sorry don’t know who said it) that said there is a saying on this site “what do you know to be true today”. That helped ground me as I went through all my tests and sat waiting to hear what my results were.  Also, as already mentioned that you need to focus on keeping yourself occupied as doing nothing can allow your mind to wander too much.  I know it’s hard to do those tasks but do your best.  I also went walking lots as it made me feel better like I was doing something positive to help fight the cancer.  Chemo can be tiring and exercise can help combat it.


Re: Waiting and wondering, is this the hardest part?

Posted by Callan on Nov 7, 2019 10:52 pm

I have very good news. 

Monday i I had a CT that left with me more questions and more worry.  After a week of restless sleep, Monday was the worst.  Difficulty falling asleep and then waking every 30-90 minutes with terrible worrisome dreams and awake at 5am.  Tuesday felt like my stomach was constantly getting ready to leave me.  In all my life I’ve never been an anxious person but I felt like I was stuck on a hamster wheel racing to nowhere and that I had no control of what was coming...  luckily I have a good friend who is also a NP who I also see on occasion when as a practitioner....   she took the info I had and sent an urgent request to a ENT specialist...  and he was able to get me in the next day (rather than the long wait to December).   It meant of day of travel but I would have done it over and over again for the sanity he was able to give me.  He did a thorough exam and the nasal endoscopy Right in his office and was satisfied that all tissue was healthy looking.   Couldn’t give me a definite reason for neck pain but some potential maybes for it, said I could come back if didn’t improve or worsened, and scheduled for a follow up in 3 months.   I was so relieved.  It took a good 15-20 minutes after the appointment before I felt I could actually breath again.   That night it took me a while to fall asleep but once I did, I don’t think I moved til my alarm woke me up.   The pain felt less bothersome today and I don’t know for sure if it’s actually better or I’m less hypersensitive to it because I’m relieved and not feeling like my body was poisoned against itself, but whatever the reason, I’m so thankful.  Forever more I’ll still have to follow up with scans of my thyroid yearly and I will gladly take that. 

I have had had great news.  And I’m so thankful.  But I am so so grateful for the community here and the kind words of those that reached out, and the stories and forums and threads here that I poured over that helped me find some solace and provided advice.   I wish that so many more here can find the comfort that I found in you and I pray that those going through their cancer journeys find healing. 

From the bottom of my heart, thank you.  

Re: Waiting and wondering, is this the hardest part?

Posted by Wendy Tea on Nov 7, 2019 11:04 pm

Callan‍ , I am so thrilled for you! Thanks for sharing!
Wendy Tea 
Healing takes time and opportunity. Wendy Tea

Re: Waiting and wondering, is this the hardest part?

Posted by Treepeo on Nov 8, 2019 7:19 pm

Hi Callan‍,

I am so happy for you!!!  That is the best news ever!

Despite your neck pain, I hope you can relax and enjoy your weekend.  Life is good. 😊