Scanxiety : Cancer and the fear of scans or scan results

15th May 2019

So today it was time for my next routine scan. This time due to my two previous NED’s (No Evidence of Disease) it was just a CT scan.  I only found that acronym out in the last few weeks so don’t worry if you had to google it as well.

Over the last couple of years I’ve racked up a few scans. I reckon I’ve been scanned more times than a reduced priced turkey at ASDA (other supermarkets are available). I’m hoping one day they might start handing out a ‘you’ve been good at the hospital today’ sticker or ‘I survived anther pointless meeting’ sticker as everyone loves a sticker. It gives us otherwise ‘none’ achievers as sense of purpose and make us feel as though we have been rewarded for our efforts.

Come to think of it I’m not really sure I’ve achieved much in my life in the way of certificates and recommendations. I sometimes do feel inferior to those individuals who complete marathons and ultra-marathons or have been recognised in their field of work by colleagues or the industry. I’m lucky if I’ve received a “thank you” for some of the work I’ve produced. For me I’m still clinging on to the fact I swam 92 lengths at the age of 7 and was awarded swimmer of the year that year. On the day of the event I was doing a sponsored swim. I finally got out of the pool (because it was shutting) totally oblivious to how long I had been swimming for or how many lengths I had done. I looked up at my mum I’m not sure she was as delighted with my efforts as she and my dad and other sponsors happened to have sponsored me by the length and only thought I’d manage 30 lengths and I had just tripled their sponsorship.

Don’t worry I haven’t forgot the sense of achievement of passing my driving test, becoming a mum or of course beating cancer. These are by far up there in the sense of life achievements. I’m just lacking a sticker to remind me or the kids when they are pushing those little ‘mum’ boundaries like they do.

Despite these number of scans and the familiarity of the whole process there are still a whirlwind of emotions before, during and after my scan that never seem to diminish. I’ve tried to keep these emotions to myself and never really mentioned this before now but to be honest I think anyone that knows me knows I’m a complete pain in the backside just before and after my scans.

Scanxiety

It wasn’t until recently that I even realised that scanxiety was actually something that is quite widely recognised amongst cancer patients who suffer from anxiety around the whole scan process and waiting for results and something that unfortunately I can relate to.

Now don’t get me wrong I don’t want to add this as another ailment to my previous medical history but it’s something that I can certainly relate to in some respects.  Hopefully by recognising it now and learning to put certain processes in place I can maybe reduce the effect it has on me and the poor sod that happens to ask me how my day was around the same time.

Also, by sharing my experience maybe it’s something other people can relate to or those around them and help them understand why them might be acting or thinking in a certain way around the time of scans.

The scan cycle

For me when I sit back and I think I can see a whole cycle of small events that seem to occur before, during and after my scan. I generally have a date in my diary for my next scan (if this is a routine one). That date just simply seems to disappear out of my head although I know roughly when it is (this may come of a surprise but I am not an organised person). Round about 1 or 2 days prior to the scan I start to subconsciously think about it. I don’t even know what I am thinking I just know it’s there in the back of my mind and I think something starts to trigger in my mind.

Stage 1 – Acknowledgement – I suddenly remember I have a scan during the month and desperately search for a letter with the appointment date and time. Once I do eventually find it it’s there in my head.

Stage 2 – The scan date is one or two days away. I start to feel the emotions of ‘have I done enough’. For example have I done enough with my diet, exercise, general wellbeing to make sure that this scan is clear? I start to then go into a bit of a panic mode and try to cram everything in at once.

A prime example of Stage 2 is when I had read about the gut and the boosting effects of immunotherapy with foods such as sauerkraut, cruciferous vegetables such as cabbage and kimchi. (Please don’t take my opinion as gospel have a look and do your own research) also please don’t judge me but on this occasion my discovery was extremely close to my next CT scan. On the day of the scan I went full hog, I devoured a whole plate of cabbage and three vegan sausages (I said don’t judge me).

My dad came to pick me up and I remember thinking, I am so full. I clearly hadn’t planned this properly I was so full and believe it or not I must have gone into ‘stage fright mode’ as I couldn’t even pass wind or burp to make some more room in my stomach. I thought nothing of it until a few weeks later when my oncologist said the results were really good but there were some signs of XXXX. I didn’t know what XXXX meant but when I asked she said basically they said your stomach was really full! I was mortified how embarrassing. I had visions of them looking at a heap of cabbage a three sausages poking about. Have I learned my lesson….nope.

Stage 3 – The scan day. For me this is the day when I am probably at peak on the annoyance scale. I can’t really describe it but words such as ‘you’ll be fine’ or ‘don’t worry’ seem to send me into crazy mode and where the words ‘fine’ are not ‘fine’. Most men will have been subject to the term ‘it’s fine’ by their significant others often used in certain scenarios such as;

Male “I’m sorry I missed our anniversary love but it’s the FA cup and I’ve promised I’ll go out with the lads. You don’t mind do you?”

Significant other “It’s fine”

Real translation: if you think you’re coming home two sheets to the wind annoying me on our anniversary then I will shove your balls/hand so far up your arse you will have forgot you ever had them.

Thankfully so far Ste hasn’t had to pull his balls out from his arse just yet but I do recognise that I am a little bit moody to say the least and my advice for those in my company it’s better not to speak to me and just offer me tea and smiles (I just hope they read this before my next scan)

Stage 4 – The actual scan. For me strangely enough this is the bit where I am pretty calm. Having had a couple of scans I’m all too familiar with the experience and how, relatively pain free it is. There have been only a couple of occasions where this has been an exception to the rule;

1. The time prior to my diagnosis where I had an MRI scan and the x-ray team had forgotten to play any music. The screeching was so horrific that I thought it felt like the white noise from SAS interrogation methods or the latest hardcore Radiohead album (you decide).

2. The time when things had taken a turn for the worse and I was told to have a scan on my chest to check if there were any issues with my lungs. At this point sitting up was a chore and my temperature spikes were so bad that I was shivering all the way to the scan. My rash was so sore that chest plates they put on the scan felt like heavy metal weights. I was terrified. Especially when it was prior to visiting time and there was no other familiar face around. Thankfully going to the scan seemed to help lowering my temperature so I actually felt better for a while afterwards. See every negative has something we can gain from it.

During the scan I tend to chant things in my mind like “I am cancer free, the treatment is continuing to work and there are no cancerous cells in my body”.  I don’t go on full tribal ritual and start wearing face paint as I’m not sure the hospital staff would agree to that but I have my own little quirks and these are what calms my nerves.

Stage 5 – All done relatively pain free maybe a bit of a mark from a canular. You’re told to drink lots of water on the day. After that I usually go home but to be honest, I just feel mentally drained so go and have a ‘nanna nap’ as I like to call it.

Stage 6 – This is the period in between my scan and my follow up results from the Oncologist.

This anticipation phase is where I worry the most. I constantly worry whether I will get a phone call or fret that “is no news good news?”. Various thoughts go around in your head and if I let it, the months of waiting for your results can put you on hold. Constant thoughts like well if this happens what should I do, etc.

All I can say from the above is that these are the roller coaster of emotions that often go through my mind regarding scans. I’m not sure if they relate to any other individuals however what I’m starting to do is:

1. Acknowledge these feelings and accept that this is part of dealing with life after cancer

2. Try to let others be aware of my feelings so that when I bite their head off or cry for no apparent reason, they know there is possibly something else going on.

3. Try to think positively put the mechanisms in place to calm myself and make sure my little rituals are done.

4. Learn not to let it affect me so much that I stop ‘living’ my life in anticipation of something that may or may not happen.

The fear bubble

A few months ago, I was watching an evening with Ant Middleton the former SBS solider from Channel 4’s SAS Who Dares Wins. There was one thing in particular that he talked about in detail that seemed to imprint on my mind. He mentioned an imaginary fear bubble and that whatever problem or issue you are about to face only enter the fear bubble when you need to.

The way he described this just made total sense and can totally be applied to all elements of life including Scanxiety or the fear of scans and test results. There is absolutely no point in procrastinating in what may or may not happen as it’s just wasted energy. All that energy can be put into other elements of your life. Like enjoying it and achieving what you thought you couldn’t. Only enter the fear bubble at the moment you totally have to. Only then do you need to face your fears and come to terms with what you may or may not have to deal with. Spend your energy focusing on making sure you are mentally and physically equipped to deal with anything.

I can’t say I’m not jumping in that fear bubble at the right moment just yet but it’s something that I am trying to improve on as well as my confidence and being the best version of me that I can.