Looking for myself

My position as the patient researcher on the GRACE project is one I am discovering. It is growing incrementally, and I’m trying it on for size, looking at different aspects, wanting to be useful yet wondering which parts of myself to share. To borrow a phrase from Marion Coutts (The Iceberg 2014) I am ‘…a volatile mix of niche knowledge and inexperience.’’ I am inexperienced in the world of research, although I am learning fast. I gain glimpses of procedures and protocols, documentation, regulations. It is new territory for me. My cancer though, that’s different. I know that. I know that intimately, viscerally.

What insights do I bring to this project, with my ‘lived experience’? Is that phrase even appropriate or is it yet one more bestowed on patients along with their ‘journey’, ‘battle’ and ‘fight’. Do we need the word ‘lived’? Isn’t the word ‘experience’ sufficient or is the emphasis essential? I have definitely lived it. I live it now. I will live it as long as I can, but I first experienced it for almost a year. A GP visit on Christmas Eve, an ultrasound on January 4th, a phone call two hours later, an appointment booked for the following morning. Then I was off. A biopsy, a CT scan, an operation, 25 fractions of radiotherapy with two rounds of concurrent chemo and then four further rounds of chemo. I was discharged, dazed, back to my local hospital in November. This all took place during the Covid pandemic, and I remain amazed and grateful for the functioning of the NHS at that time.

So…what niche knowledge do I have? Mixed things. A jumble of insights. In research terms, I am n=1 but I can point to a wider field. Your head hurts as your hair falls out. A head that has hair one day and none the next, is cold. When it grows back, it itches. It sprouts. Don’t be fooled. This falls out. You are not done with chemo yet. It left 1cm lengths on jumpers and blankets which made me think I’d been with a moulting animal, only to remind myself that there were no pets. It returned. A new growth cycle. Loops of grey curls that I hid under hats until they were strong and safe enough to dye. Comments about a short hairstyle not of your choice are strangely harder to manage than having no hair.

There were days and nights of bone ache where there was no pain-free position to place any limb against limb and no place in my mouth for my tongue to lie where it didn’t annoy me. But my body was my ally. We were in this together. Together we would rebuild. Cancer treatment is peaks and troughs, damage and repair. Protein is essential. Exercise too.

I know the perplexity of finishing treatment but not feeling elated. Of having a scan three months into follow-up due to a suspected regrowth and the rising panic at being told it was clear. Thrust back into limbo. Waiting for recurrence oddly more difficult than the reassurance of a new plan and pathway. You don’t understand the way your brain now thinks; it is not how you’d assumed.

I know the rise and fall of emotional tumult. My thoughts were pinnacled by gratitude for all the love I was shown, the NHS provision, the fact that I was still alive in this world. Mid-treatment, I made it to my daughter’s wedding in a chemo hat of feathery delight and flamboyant heels, my battered body bookended with positivity.

I know the desire to be a ‘good’ patient, to protect those I love from stark statistics. I would joke with girlfriends about the indignities of gynae examinations then later wince at the loss of intimate privacy. Some friends were the very best of humanity and yet to one, I was the
embodiment of the worst of her health anxieties and so she left; a long-shared history not quite enough to overcome acute fear.

I know small things: That one square of that ubiquitous blue paper towel is not enough to make me feel safe, so please tear yards of it off the roll and cover me abundantly. That having to have a chaperone only because the viewing lamp is falling off the wall and someone has to be there to hold it, is a bit funny but might be enough to make me cry. That one of my positioning tattoos is smudged and it mostly doesn’t bother me but sometimes it does. That a routine letter I received after surgery inviting me to a cervical screening test, accompanied by a leaflet urging me to ‘STOP CANCER!’ when all my gynae organs had been taken from me and there was not a remnant of cervix remaining, was enough to send me into paroxysms of howling rage and hurt.

And the doubts…the things that haunt in the irrational hours between 2 and 4 am. The HCA who was too short to measure my height carefully. What did she write? Was my BMI correctly calculated? Was my chemo dose dependent on inaccurate jottings? Why didn’t I check? Why didn’t I ask? And my treatment…who was I in that time? Where was I? I look back at that year and like Emily Dickinson, find myself now ‘out with lanterns, looking for myself’. I tried. I did reams of research, built up folders of academic papers, collated a myriad Macmillan booklets, acquired all my blood tests, my CT scan, my histopathology reports and even paid to study a module on endometrial cancer, but in the actual moments, didn’t ask all the questions I now want to ask.

Draw me pelvic sketches. Tell me how you think this happened. Show me those percentage risk diagrams with the little blue and red figures. Explain to me how radiotherapy works. What are you radiating? I’ve had lots of parts removed. Is there a space? Have my intestines nestled into the gap? I don’t understand. I need help here. Describe the short-term side effects and how they can be managed. Define my likelihood of long-term damage and be open about mitigations proven and those as yet unknown. Give me agency and control. I want to weigh things up. To heft that knowledge and consider. I’m privileged enough to have self-efficacy and advocacy and a good level of health literacy and to know enough to toss these words around, but in the moment, the many moments and opportunities, I didn’t ask enough.

But. Stop. Reflect. Is that assessment accurate? Could it be simply that I wasn’t told enough? There are places along the consent pathway to give patients information which at that point in time, they might not even know that they will want to know. Life after a diagnosis is uncertain and unstable but informed consent is a measure to hold on to. This is where the GRACE project comes in and why I want to be a part of it. By talking to patients, carers and healthcare professionals, the GRACE project aims to enhance the consent process and improve the quality and depth of knowledge women are given when they are offered radiotherapy. Hopefully, in the future, patients will no longer need to feel it was their responsibility to ask.