Living With Scanxiety

My next PET CT scan date is looming and my major fears about the future have reared their ugly head once again.

Scanxiety is a term used to describe the anxious feelings that arise in the time leading up to an imaging scan, during the scan and whilst waiting for the results to check for disease progression. I’ve read about the term a lot over the past few years as it’s frequently referred to within the cancer community.

Over the last eight years I’ve had countless scans; MRI scans, CT scans and PET CT to name a few. Each come with their own levels of stress and anxiety, especially since my hospitalisation and anaphylactic shock when I had a CT scan a few years ago! I spent the night before Christmas Eve in hospital as a result and it’s fair to say the day itself passed me by and I only woke to eat and went back to bed again as soon as I could. It wasn’t such a Merry Christmas after all. Now I am contrast free and go for PET CT scans every three months, which eliminates the use of contrast, instead using a radioactive tracer which I’ve so far had no issues with.

My anxiety levels have increased over the past few weeks, I’ll go from feeling fine to the brink of bursting into tears on the short walk from my house to the tube station on my way to work each day. I keep having nightmares about my diagnosis; being told Pembrolizumab isn’t working and there isn’t any more treatment that can help me, or loosing my hair again.

When you have cancer, all the focus is on physical health and trying to keep disease at bay. The constant cycle of treatments, particularly with invasive chemotherapy and Immunotherapy appointments over the past four years has meant its my full-time job. I worry often that my mental health suffers as a result, and it’s only in the past year or so I’ve really focussed on trying to get myself mentally stronger. Lately I’ve been feeling as though I am having a bit of a midlife crisis, and dealing with cancer daily is more than I bargained for, more on that in a future blog post!

Despite me being a ‘lifer’ in cancer terms it seems I would be used the routine but in reality it doesn’t make the multiple appointments any less worrying. The ridiculous thing is that regardless of me loosing sleep or not, the outcome will still be the same. What will be, will be after all! What I know is that it is something that consumes my mind from the moment I wake up until I go back to bed at in the evening, there is no rest.

I have been feeling sick and suffering from headaches, which I’m sure are a sign of the worry and stress, or maybe I just need to eat breakfast when I wake up. My experience means that my mind jumps from headache to deadly brain tumour in a instant. I know all the signs because I’ve been there before, so have had a couple of acupuncture sessions in the hope some tension will be relived.

The next few weeks are going to be testing. I’m wishing time away again so I know where I stand.

17 thoughts on “Living With Scanxiety

  1. jolene my heart gos out to you. 💓We all have our fears in life and most times we can’t get our head around them.
    We cannot control the cards we have been dealt and we can’t never change that. I don’t won’t to sound patronising but you have got great strength and love for life.
    Keep doing what u do best.
    Regards gerry💕

    Liked by 1 person

  2. We don’t know each other Jolene but we have a connection in that I am a stage 4 cancer patient on maintenance chemo. I feel excactly the same, you do go from treatment to treatment and scan to the next scan and no matter how we try to remain “positive” its there in the back of your mind “what if” Just before appointments my anxiety is at its highest and like you say your expecting them to say “ sorry but the treatment is not working”
    There are no words to say to you that will take away this feeling Jolene but just no that you are not alone and that all your loveones are routing for you and remember they have been with you on this journey and will continue to be there, make sure you talk to them about your fears. Im hoping you get good news from your next scan 😘

    Liked by 2 people

  3. Hi Jolene, thanks for another brilliant blog. Strangely this one coincides with my getting ‘not very good’ results back from my CT Scan. The alien has returned and I need more chemo, thankfully I feel strong and you are an absolute inspiration so thank you. xxx

    Liked by 1 person

  4. Stay mindful of the here & now. Focus on what you can achieve in the moment.
    Jo – look at what you have achieved until now too. Thanks for sharing your story & big hug to you and the people that have responded going through worries too xx

    Liked by 1 person

  5. We are just back from David’s 12 week body CT scan, with new headaches meaning a head MRI on Saturday. He, too is Stage 4, but on dab/tram. As we sat here feeling fraught, drinking tea, and (both) full of scanxiety, I just found your blog and read it to him. He has nodded in recognition whilst I struggled to read it because yes, it’s so real. We hope you get good results x

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  6. Having not long joined the melanoma group this is the first that I have read your blog and I have to say I can associate with every word . My sister’s and friends all say to me ” You must be getting “used ” to all these procedures ” and I think Oh no if anything it’s the exact opposite of that I have terrible anxiety in the lead up to all hospital appointments and esp.scans .There isn’t anything I can say to you to try that you haven’t probably already tried but like you say whatever will be will be ..I wish you the very best of luck and also sending you the biggest hug ever , so all my love to you and hopefully I can continue reading your blog xx

    Liked by 1 person

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