scanxiety Archives

If I am a sensitive soul, I tend to be a resilient person and managed quite well my Cancer journey so far… except the scanxiety associated to PET Scans.

I am not saying it was easy but listening to my body and emotions, I could overcome quite reasonably the hurdles. Today, I support as much as possible patients around me, and decided to take a life coach certification to accompany people through transformational phases of their life. Still, I recently realized that the journey wasn’t fully over and I needed help myself. I would like to share what I learnt and how I dealt with an awful scanxiety episode.

It all started last November, in a classroom with my fellow Coaching trainees.

The facilitator asked for a volunteer to demonstrate a protocol on emotions and that was me. I eventually, took the scanxiety related to my upcoming January PET Scan as example thinking it would be an easy one. In fact, I burst into tears. A wave of panic hidden deep inside that I had refused to acknowledge so far.

How I had handled PET Scan anxiety the previous times?

For previous follow-up scans, I was always in a positive mindset: I had just completed my treatment (so the risk was minimal), I had not experienced any worrying signs, my blood tests were good, etc. Nevertheless, I always had latent stress till the results, in general, were shared in one to three days afterward.

The fear or panic would come on the day I was expecting them. Typically, I was stuck on my phone waiting for an email or WhatsApp from the nurse, in growing anxiety. The panic would come then very intensively in the last instants. My inner Little Voice would take over any rationale and start interpreting any pain in the body as potential metastasis, analyzing why the nurse had waited for x minutes before sharing the results? Is it that she doesn’t know how to share the bad news etc.?

I would keep that stress to myself and only maybe post on TheCancerMajlis some Scanxiety related content on Facebook and Instagram pages. In fact, the only precaution was to book the PET scan when my oncologist was available for a follow-up appointment 2 or 3 days after.

The other resources I had ignored or not purposely used so far

During the Coaching exercise, I listed the resources I could use to accompany me during the PET Scan anxiety phase proactively in view of the one scheduled in January. Here is the list:

My family, friends
My support groups (Brest Friends, Pink Ladies)
The medical team
Art therapy
Yoga
TheCancerMajlis
Coaching
Writing

I didn’t want to share my fears with my family and friends simply not to scare them. I caused enough sorrow to my husband and parents. As discussed with my medical team: how ridiculous could it be that a “survivor” shares her doubts while they work hard to save others having much more immediate reasons to worry. With my support group ladies? Imagine if we all discuss little irrational fears and eventually end up “contaminating” each other? Art, I do sculpture and recently discovered that drawing my worries helped me to let go.

In fact, let’s be real, I didn’t know I was scared, I didn’t want to admit I was that scared.

My 2020 Scanxiety plan

The January PET Scan was a bit special because I have major long terms plans for 2020 which a relapse would totally compromise. Also, a lovely lady, mum of pre-teens, who I had met via our support group, passed away right before Christmas. Last but not least… I had pain in my left breast.

Concluding the Coaching exercise, I promised I would talk to my support group (and my colleagues from the Coaching training who had been really touched by the whole scene).

I then decided I had to acknowledge my anxiety and deal with it seriously and proactively.

Spoke to my husband
Admitted my fear when friends asked me about the upcoming scan
Share my concern with my Oncologist
Kept my Coach trainees group posted regularly
Discussed it with my Coach
Opened up with support groups and got a wonderful support in return. Few kept in touch regularly on a one to one and really made a difference.
Watched “good mood” TV shows on YouTube whenever needed
Posted on TheCancerMajlis
Painted, sculpted, went to yoga, wrote ….and started a little scanxiety journal.

How did my Scanxiety journal help?

The scanxiety journal has been a great help.

I could just release without censure all the so-called ridiculous fears. I started it on January 2^nd and stopped on February 9^th. That’s long when you panic. There were three characters in this tragicomedy:

The Little Voice: the uncontrollable inner voice that echoes, tweaks and amplifies every sign. The Little Voice is my heart, my scared guts, the former patient in me, the one part which will never heal. The trauma.
The Brain: the smart me. The part which tries to rationalize everything. The one which tries to take control over The Little Voice. Until fears feed it so fast and with so much material that nothing can stop it.
Me: the poor me. I was still there at the beginning, hearing, listening sometimes, balancing both until I lost the battle. I would go from The Brain to The Little Voice is half a second.

How did the 2020 Scanxiety plan work?

Good question. Not sure what to say. Stress was there however I wasn’t alone.

Also, in the absence of people around me in stressful moments (i.e. most of the time let’s face it), the journal was a great help: I could release my thoughts straight away. I simply opened a Note in my phone, nothing sophisticated. However, letting go on paper gives you some relief.

I would certainly do that again and recommend it.

All your thoughts on “paper”, without anyone to judge, tell you that you shouldn’t worry, that you should think about something else, that you are going to be fine… Call it self-counseling!

How did the PET Scan go?

Ah, Ah! Are you worried?

I am blessed and there was nothing to declare: no toe sarcoma, rib cage bone cancer, no inflammatory breast cancer, no brain tumor. I literally self-diagnosed all the previous at some point.

If I then felt relieved?

Nope. Because the sensation, discomfort, and clinical exams weren’t lying. So, I decided to investigate further to get to the bottom of it. Not because I am a hypochondriac, but because I learned you need to listen to your body.

I went to a wonderful Breast Surgeon who took me very seriously. And it felt good not to be dismissed. The rest of the story is mine but it is not Cancer, it is not life-threatening, nothing to worry about but now, I can close the chapter. Maybe even removing my Port-a-Cath.

Since mid April 2018 when doctors explained me my treatment plan, I put all my energy and focus into getting through keeping my life. I didn’t want Cancer to interfere to a greater extend than the treatment would require. I did my very best to keep active socially, professionally, as a mum, as a wife, as a daughter or sister. Of course, it is a bit naive as the treatment takes some space but I welcomed it as part of my new life, not as a burden.

When I completed the chemo cycles, I got ready for radiation and was still dealing with heavy side effects. Honestly, looking back I don’t think I realized the big chunk of the treatment phase was over. Half way through radiation, I started looking a bit more ahead and projecting myself in a longer timeline that today or tomorrow. Strange enough, this period was the most difficult for me.

First, people around me were happy and started telling me everything was over but I wasn’t ready for it. Going for treatment is actually reassuring. You do something to heal, to avoid relapse. The end of treatment meant leaving my fate into the hands of the universe. Insha’Allah as we say here, it won’t come back. This is quite tough to accept. The wait-and-see approach is not my cup of tea. I remember asking my Oncologist to do more chemo. [For a quick rewind, targeted treatments and hormonotherapies have no effect on my type of cancer (triple negative).] Had you ever heard of someone begging for chemo? I didn’t feel I had completed the treatment but stopped it. That was scary.

Karma

Then, karma made that I coincidentally reconnected with people I had lost contact for few years but had recently lost loved ones to Cancer (children and spouse). I could just empathize. I could understand part of what they went through but being a patient is probably easier than a caregiver. We had sincere emotional conversations but it didn’t scare me. Some people had advised me against to protect me but every single patient knows what could be the end of the cancer journey. If karma had put them back in my life it was for a reason. On my side, I felt more than ever the urge to live to the fullest and give back. Be grateful. Contribute. Maybe in a way, deserve my fate.

Perspective

Also, it is difficult to go back into a certain normality and see people around you wasting their life. See how many people are complaining for small issues, putting all their energy into activities or jobs that they don’t truly enjoy or take pride of doing, sacrificing today in the hope of a good tomorrow. I am not stupid, we all need an income but when it is at the cost of (mental) health the situation needs to be reassessed. Cancer gives you so much perspective that it is difficult to care again for small matters. Everything seems insignificant.

Fearless or almost

Last, Cancer was a step in my life and changed it. I know I tried to minimize disruptions but first the first lesson on the happiness journey is to welcome positive changes. I can’t say a Cancer was positive however the impact of my life was. Let me explain, going back to your life afterwards is not easy. After slaps in the face like these, you have a different perspective and your past life might not suit you any more. Not that you fundamentally changed, just that some of the concessions you had done over the years are now unacceptable.

That was my case, I liked my job but I wanted more. I didn’t know what exactly however it was just fulfilling some of my aspirations but not enough, not all of them. Suddenly, I was more scared to go back to that life than risking to reconsider it all and be open for what the future would bring. Fearless or almost.

Work in Progress

I decided to follow my intuition and trust my future. Today, I am work in progress, under (re)construction.

I started working seriously on The Cancer Majlis while ongoing radiation treatment, few days after reconnecting with my former colleagues. I launched it very soon afterwards.
I authorized myself to take some time off to reflect and digest that chapter. I discussed few options at work. I sincerely was ready to resign if needed as I knew it was vital to step back. Everything but depressed, however I needed to take the time. Thankfully, we could agree on a sabbatical leave.
I searched for training courses that I had thought of registering to few years back without having the guts to do it. That would occupy part of my sabbatical. I loved the idea of challenging myself and stepping out of my comfort zone.
I slowed down. I go more often out for lunch, coffee, dinner with friends. Working or not, rich or poor, we can all do that.

I planned to resume hobbies I had left aside during my sabbatical. I am back to sculpture. Santa brought me brushes and watercolors. I always said I would try. Who cares if I am good at it or not? Art therapy time!
I traveled 10 days alone. Walked the streets, went to museums, cinema, saw my family back home. I needed that retreat trip. I traveled with my family too. Just us and quality time.

I decided to take care of myself and face the post cancer body and mind.
- Of course, there is the tight follow up which includes tumor marker blood tests every three months, PET Scan every six months for two or three years. Now, I also refer to the support treatments.
- Yoga, Physiotherapy and Osteopathy to help with joint pain, rib cage and scar pain and stiffness, breathing issues, and back pain, though some require to wait for six months post radiation.
- Some acupuncture also.
- Emotionally, I needed to deal with negative feelings such as scanxiety (fear of relapse related to follow up scans and tests), and guilt towards my family too. I did with EFT which I discovered thanks to a friend met at the hospital.

I decided to explore opportunities, to be open, see what life had to offer me. Amazingly, I met a load of new people, learnt a lot about me and the others. I see now many more opportunities than pre-Cancer. In fact, my fears and self imposed boundaries are gone.

Bucket list

Post Cancer is difficult. There is no such a thing as going back to your life where you had left it, or forgetting. No patient can do that without risking a depression afterwards. We need to reflect, swallow and learn how to continue our journey considering our scars. Regrowing hair, port-a-cath, pains, new body in general, are there in the mirror to remind us we shouldn’t take anything for granted.

I always was “that kinda people” who smile when they see a beautiful sunset, pause to listen to a bird singing, aren’t ashamed to shed tears of happiness. Slowing down gave me more chances to live moments like these. I am still not sure what my purpose in life is meant to be, however, I am not waiting for happiness, not waiting for tomorrow to enjoy life.

I don’t have all answers. Life is not perfect but it is beautiful and worth living to the fullest. My sabbatical leave is busy and I love it. What will happen? Don’t know. Will I relapse or not, don’t know. Of course, as I promised myself when I got diagnosed, one day I will be grandma and will do the needful. But it is not about living long, it is about living and enjoying every bit of it, making it worth. I work on my bucket list, not because I will die soon but because I am alive.

Tag: scanxiety

My Scanxiety Journal