My Blue Letter Pain

The power of the mind and the role thoughts play in the experience of pain was brought home to me in a dramatic way recently.

I am a passionate believer in the fact that every experience you have, your environment, everyone you meet, the people and things around you all affect your feelings of wellbeing and the experience of pain. My recent experience has reinforced this belief. It has been a valuable lesson in my understanding of how our thoughts can cause actual physical symptoms and of the importance not only of the clinician/patient relationship but also of all our communications with patients.

Two weeks ago a letter arrived requesting I attend a routine mammogram. It’s not a pleasant experience – the set up is in a mobile unit in the hospital car park. Like most women it’s something I endure for the sake of my health. I got it over and done with, thought nothing more and went back to my life.

Five days later I received the result printed on blue paper, and as I took it out of the envelope I experienced pain in my left breast. I instinctively knew it wasn’t ‘good’ news because a) it was printed on blue paper b) the Nhs had responded quickly. Sure enough I was being recalled for second stage screening.

The letter was a standard letter as was the enclosed information leaflet covering all eventualities. My thought processes at this stage were fairly logical – ‘It’s much more likely I’ve been recalled because I was in the wrong position…or the film was exposed differently…or I may have inadvertently moved …or breathed too deeply.’ I was also able to marvel at feeling pain on opening this blue letter.

However, as I read the ‘helpful’ information leaflet, I found my brain focusing in more and more on the word cancer and the number of times it was used –

‘NOT ALL ABNORMALITIES ON THE MAMMOGRAM ARE DUE TO CANCER’ printed in capital letters across the top.

‘You will have an examination, a consultation with a Breast Care nurse, further scans, an ultrasound and perhaps tissue sampling.’

….you can bring someone with you, if you would find this helpful…

It finished with –

MOST WOMEN WHO COME BACK FOR ASSESSMENT DO NOT HAVE BREAST CANCER.

This time the wording was in BOLD CAPITALS!

 This blue letter with its capitalised, bold letters gave me pain. It was a threat … potentially to my whole future.

The pain was very real and remained as a dull ache with the occasional sharp jab throughout the long 10-day wait.

Interestingly, in the following days I became consciously more aware of the word cancer. Did I always get this many emails from cancer charities? Were there always this many TV adverts about cancer? In the instant of opening that letter my ‘filter’ on the world had changed. I liken it to attaching a filter on a camera lens and this new filter of mine was making me view the world differently. Isn’t it strange what your brain picks up on when it’s on alert?

It seemed everything was focusing my attention onto the ‘C’ word despite the logical part of my mind reasoning that it was much more likely I’d be told there was absolutely nothing wrong.

On the day, my husband and I made our way to the Breast Care Clinic, guided by signs to McMillan Wellbeing Centre, banners that read ‘Living Well with Cancer’. Everything screamed CANCER!!! The pain in my left breast went up a notch.

The information said four out of five women recalled would be clear. Co-incidentally there were five women in the waiting room. It was a strange experience. As we walked into the room a silent message passed between the women there – each looked up and acknowledged my presence quietly.

Each of us was called in one by one to see the Breast Care nurse, for a CT Scan, then the radiologist who did an ultrasound. I for one silently wished the others good luck as they disappeared behind closed doors whilst at the same time hoping I wasn’t THE ONE out of these five women whose life would change today.

The waiting room itself was interesting – very pleasant, airy with lots of natural light. An art installation strung across the length of the ceiling caught the sun’s rays and played patterns on the walls. It was not your usual Nhs waiting room – too nice… and decorated in McMillan colours of vivid green and purple. It screamed CANCER out loud.

Isn’t it interesting how sensitive and hypervigilant you get to more perceived threat when your survival feels threatened? It’s funny how fear and anxiety alters your perspective on the world.

The friendly, smiley Breast Care nurse told me my mammogram showed a thickening in my left breast. LEFT breast! Now my pain had a label…meaning! It was only then I realised that despite my fears I had fully expected her to say, ‘We need to do another mammogram because something went wrong with the process, or the film wasn’t clear enough.’ Now, it was suddenly more real – the pain in my left breast lanced sharply. She asked me if I was worried. Does anyone say they are not? She then said that if I was worried I could have the results today, or otherwise wait until they came by post…really? Does anyone opt to wait a week or more? Back to the waiting room, the other women and their partners. I wonder how they got on?

Next the radiologist welcomed us into her room with a limp handshake and proceeded to show me ‘the thickening’ on my mammogram… comparing it with three years ago. Throughout the consultation her focus was on the computer screen, friendly enough but never making eye contact or a personal connection ­– perhaps this is her way of coping.

The thickening wasn’t evident on today’s CT scan! YAY! Step one completed successfully.

We proceeded to the ultrasound room where the radiologist scanned me and at the end of this procedure said ‘That’s OK’ whilst still looking at the screen. So I asked ‘OK?’ not knowing if she was talking about the procedure or the result. ‘Does that mean I’m clear?’ She replied ‘Yes, it’s clear.’ We returned to our seats and she to her computer screen, still no eye contact. As she clicked and scrolled she repeated ‘It’s all clear, you are free to go, we’ll recall you in three years time.’ To which I said ‘So I don’t have cancer.’ ‘No’ came the answer still without looking at me. I felt I’d been reduced to ‘it’, my left breast. Oh how I wished for her to look me in the eye, smile and say ‘I’m REALLY pleased to tell you that the tests are normal and you don’t have cancer.’ It would have made it somehow more believable, removed the doubt that had wormed its way into my mind.

The experience has made me reflect on the fact that what seems routine or ‘small fry’ to us as clinicians is often a BIG deal to our patients and I hope I never lose sight of this.

I was surprised how I reacted to the blue letter. I am normally pretty level headed and logical. Last September I entered my 60^th year and have been actively seeking out 60 different activities/experiences, but this certainly hadn’t been on my radar. It made me contemplate the uncertainty and transience of life, reassess my priorities, focus on really living my life well. I realised that all these thoughts about how I would potentially need to put my life and plans on hold plus the uncertainty of those few days all came together to make my experience of pain where there was no actual physical problem or harm being done.

Although I wouldn’t wish to go through it again, it was a highly valuable life experience, in terms of illustrating the power of the mind, the value of good communication skills and empathy in the clinician/patient relationship, even the layout, wording and colour of hospital letters and waiting rooms.

I’m pleased to say when the threat disappeared so did the pain and my ‘filter’ has readjusted. Aren’t we wonderfully complex beings?

Ten days later I received confirmation in a written letter. It said –

‘I’m pleased to tell you that following further assessment the results were normal in that no signs of breast cancer were seen. This means that your next routine screening appointment will be due in three years time.’ GREAT – it was there in black and white. Doubt removed.

Then came the killer line – ‘In the meantime, please remember that screening will not find all breast cancers….’

Fortunately with my filter readjusted I could laugh at this comment and reflect that as clinicians we REALLY do need to think carefully about the words we use and the way we present them.