Mary

'Sausage is a great deal like life. You get out of it what you put into it.'
Jimmy Dean

Mary explains the challenges of coping with 'chemo brain' after treatment for non-Hodgkin lymphoma.

Mary

Sausages seems an apt heading for my story as it was the humble sausage that sparked off an incident.

I’d always imagined that people with dementia forgot huge episodes of their life, not just simple, everyday words and associations. I may of course be wrong as I don’t pretend to be an expert, but a recent episode gave me a small insight into what it must be like to lose part of your memory.

The anger and frustration that such gaps in memory bring was brought forcibly home to me when I recently experienced an extremely frightening and distressing experience.

It all started so well. The sun was shining, I’d been out of hospital for eight days since my treatment and I felt an unexpected energy and desire to achieve something from the day; ‘Let’s go for a walk’ I suggested.

Pleased at the thought of some action my husband quickly agreed. We set off towards the little village just half a mile or so away from where we lived. It felt so good to be to be outdoors without the confines of walls so when my husband suggested walking a little further I readily agreed. We walked past the old parish church, over the hump-backed stone bridge and along the small, overgrown lane that led to the museum and car park.  

Reluctant to return to the confines of my home and determined to make the most of the day I encouraged my husband to walk further. Slowly we traversed the boundaries of the village and then moved onwards towards the shopping area closer to town. We were almost there when my husband innocently asked what I wanted for tea. No answer sprang immediately to mind but I remembered that we’d spoken of this just a few hours earlier.

‘You know. I told you earlier’ I said. My husband tentatively enquired, ‘Sausages?’

Nothing registered so I was convinced that couldn’t be correct.

‘You know’ I repeated, feeling annoyed at myself for not being able to remember. He tried again, ‘Fishfingers?’

By now, unable to find any words to help him, I resorted to hand signals, sketching out two parallel lines with my fingers.

‘Stop being stupid. You know, those long, thin things with skins on.’

Once again he tried, ‘Sausages.’ At this point I felt really angry. I stopped walking and began using my hands to sketch out the shape again.

Suddenly the energy needed to carry on this ridiculous conversation left me. I felt weak and drained both physically and mentally. I leant heavily against the nearest fence and said ‘I need to go home.’

Trying to make conversation, my husband asked if I’d heard from Linda, a friend and work colleague. Once again, the word meant nothing to me.

‘What’s Linda’ I asked. Feeling seriously concerned, my husband gave up and talked about everyday, mundane subjects until we reached our house.

 
By this time, I felt completely exhausted. I lay down on the settee and slept soundly for forty minutes. When I woke up I felt really hungry.
Mary

‘Are we having sausages for tea then?’ It suddenly hit me as I remembered those ridiculous conversations on the way home, my frustration and anger at not being able to remember words or their associations. My symptoms were obviously only a temporary blip but how difficult must it be for people who have to live with it every day?

In hindsight, I had probably overdone things. Indeed, I found out the next day on a visit to the Day Unit that this type of experience is not uncommon in those undergoing chemotherapy. In fact, there is even a name for it, ‘chemo brain.’ This describes a mental cloudiness (fog) that as in my case, can affect memory. It can also affect concentration, organisation and processing speed.

 
Luckily for me, my chemo brain was short term, but I may blame it when I next forget my computer password!
Mary

Luckily most symptoms seem to be short term. Mine certainly was, although I may blame ‘chemo brain’ next time I forget my computer passwords or my next dental appointment.