Scanxiety tips and tricks

@louisejewell I’m so glad to hear your treatment is going so well with very few uncomfortable side effects other than uti’s. You’ve hit on a great way of getting your tests over and done with and dealing with your anxiety and needle phobia while they’re being done.

My anxiety occurs related to blood draws and infusion needles. All my appts. are in one day so I take an Ativan when I arrive and it relaxes me enough for pet scans and needles. My libtayo imunotherapy is tolerated well enough. I don't have many/any real side effects after 6 months other than frequent uti's, I guess w/my compromised immune system.

Hi, @verena
You make a good point. It's not just the anxiety leading up to the tests and scans. Waiting for the results is just as stressful. Years ago I'd had a breast lumpectomy because of a "suspicious" spot on my mammogram. I waited to get feedback regarding the results but didn't hear anything for quite a while. Meanwhile I became more and more anxious. When I called to ask about the results, I was told that the my surgeon had left for a vacation in the Virgin Islands right after my procedure, he would not be back for another week or so, and his office was closed. Can you imagine my level of anxiety? In any case, a very compassionate nurse at the hospital was able to contact someone who was able to call me with the results. Fortunately, the lump was benign. But the anxiety while waiting for that result was torturous.
To this day, I still have that period of anxiety while waiting for test and scan results. So, you're not alone in that. Hugs.

Hi, @j0318,
Many thanks...from Maisha and me. 😊🦋

I deal badly with scanxiety. The last time, in December, was especially rough because I was not sure I would get the results before the holidays. I usually start to fret 2 weeks before the scans and it takes 1-2 weeks for the results to come back. Rinse repeat every three month . Which leaves 2 month between misery to try and live my best life possible. Not enough. Some things help: I am in a cancer specific online support group. I got such an overwhelming caring response to my “ dang scans over the holidays “ post, it helped a lot. I am okay to not feel okay, it does not mean I am not strong. I trust my medical team. Lastly, one thing about survival statistics is that they look back 5 years, I look forward. Best wishes to everyone here.

Thank you @my44! Sending you and Maisha best wishes for good health as well.🙂🌻

@gingerw That’s a big drive and a good time to think. I totally get why following and understanding your test results would be so very helpful to you in dealing with your complex situation. Maybe when mine does come back (hopefully years from now) that will also be my approach too. I have learnt how flexible we need to be to deal with the swings and roundabouts 🙏

We both have our routines which help us cope mentally. It would be interesting to know what routines others have too.

@isadora2021 You're welcome! It is a 2.5 hr drive each way for me to get to those appointments. I usually am able to coordinate them onto one day, to avoid unneeded miles on me and my car ;)) That drive time allows me to hash and rehash a lot in my mind. There have been a few times when I stop and do some writing.

Analyzing, recognizing trends, understanding the how and why a set of labs might be "off" makes it a challenge to me, and helps offset the scared feelings and all. My case is an admitted "complicated" one according to all my team, and the more information I can get, the better, the fewer dark corners.
Ginger

@gingerw Absolutely. People have been wonderful in commenting. It’s such a great safe community.

Oh my goodness, Ginger. That’s amazing and I am so inspired by your attitude in dealing with your situation including monthly testing. I hope you continue to stay on top 🙏

I was so glad to be done with the fortnightly blood draws during treatment. I must confess I never checked my results and I told my oncology team just to let me know if we might be heading towards 2nd line. I still don’t read my results ( blood or PET-CT) myself and meet with my oncologist after the tests for him to say there’s nothing or there’s something! The routine of catching the train and walking through the hospital to the medical centre is calming in a weird way.

I have been surprised at my hands off approach. I am normally someone who likes researching and analysing information - the more the better. When I first saw the statistical prognosis for my diagnosis on Dr Google I headed in the total opposite direction and “decided” I would be fine. The resultant peace and lack of stress was tremendous. Also in my job people paid me a lot of money to take on their business problems, do the worrying for them and fix them. I am reversing that now!

I don’t know why I can’t be in the same headspace now I’m in remission! It’s weird.

I do continue to control what I can such as my diet, exercise etc. You’re so right that to do so is so important.

Thank you for sharing. It is very inspirational.

@isadora2021 You have had some great replies to your query, haven't you? It's definitely a mind-body connection, in my mind.

Today I had my monthly testing with both my oncologist for multiple myeloma, and my dialysis clinic for their own review. Two appointments, two blood draws, two sets of results. This happens each month. There are certain numbers I go to first, as they are the most important. I keep a spreadsheet to log all results, and watch trends. Do I worry about what each month will show? Absolutely, no doubt about that! But I know that keeping ahead of any potential problem is important, and my two specialists speak to each other to coordinate my care and treatments. What I do about the anxiety is knowing we are balancing a fine line, and watch to do what I can by eating right, moderate exercise, journaling my thoughts, sharing my experience with those who want to listen. We are each teachers and learners!
Ginger