Cancer. The gift that keeps on giving.
Not many people know this, but far beyond the reaches of the chemotherapy ward, even months and years after cancer patients leave their infusion chairs behind and take brave steps forward trying to find all the remnants of their former selves and stitch them all back together, the toxins from such heavy duty treatment continue to wreak havoc on bodies and minds.
There is the threat of painful oedema in limbs where lymph nodes have been removed, there is tight roping scar tissue that makes it hard to stretch. There is peripheral neuropathy that continues to numb our extremities and make simple buttons and jar lids as difficult to open as if we were ninety.
There is lung scarring left over from radiation, fatigue, dry skin, weak nails, dental problems and just a general distrust of our bodies.
But most frustrating for me, of all my long-term side effects of cancer, is Chemo brain.
The Anthracyclines that hopefully killed off all my cancerous cells, infortunately had similar effects on healthy cells as well. Chemo brain is a well-documented side effect of cancer treatments, and the drugs that were pumped through my veins to save my life are among the most likely to affect future brain function. While their toxicity was a necessary evil, not a day goes by where I don’t notice their impact; on my memory, on my mood, on my day-to-day brain function.
There are days where I feel like I’m losing my mind. I wrote about it recently as my application for university study. I had to write a piece detailing why I wanted to study Professional Writing. The following just flooded out of me, and while it felt like a strange application essay at the time, the words needed to be written down, so I did not fight them.
Something must have resonated with the course enrolment officers, because I am now a uni student once again. This time round, I couldn’t be more excited.
Here it is. I guess it explains that for some of us, writing isn’t a choice. It’s a need. I need to get my music out. It will not stay inside.
Yesterday I couldn’t remember the word ‘opinion’. There I was, mid-conversation with a colleague over lunch, and suddenly the word I was searching for, ‘opinion’, disappeared from my vernacular. Gone.
Now, I know everyone has moments like this, where words on the ‘tip of their tongue’ vanish the precise minute they are meant to appear. I’m sure right about now, you’re sitting there thinking, ‘no big deal’. The problem is, and I haven’t said this to anybody else yet…this forgetting…it’s been happening a lot lately and I’m terrified. I have always prided myself on my ability to articulate well. It’s one of my defining qualities, and I am starting to feel it slip away from me.
At 38 years of age, I am showing several, small but noticeable signs of early-onset dementia: forgetfulness, memory loss, even the ability to recognise people’s faces. At first it was pretty insignificant: a couple of missed appointments, hazy recollections of prominent life moments, torturous hours spent trying to remember the most ridiculously simple words. But lately it’s become far more obvious.
Most excruciating, are the multiple times I have met someone, and then subsequently ‘re-met’ them again after forgetting their face and name completely. When I reply to, “Hey, have you guys met?” with a “No,” but the other person says in a confused voice, “Yes we have,” my heart sinks. Then I cartwheel through the depths of my brain trying to stir up any small flicker of identification. Just a whisper of a memory that might serve correct. More often than not, I am left flailing in an awkward pause the size of China, clumsily feigning recall but retreating as hastily as I can. People must think I’m so rude!
Why all this excruciating back-story when you really just want to read my application to enrol in Professional Writing?
Well, so far, the writing section of my brain seems in tact. I write and I am free of the awkward pause, the lost word, the misplaced memory. Where the immediacy of speaking often leaves me anxious and clammed up, writing feels easier. In writing, there is no befuddlement, no frantic wading through the depths of my mind for missing puzzle pieces. Somehow, the chasms melt away at my keyboard and I am able to prise open my clamshell and the words still come.
Last year, I found myself writing through a cruel and unfair time. I wrote because I was searching for meaning and needing to purge my mind of grief and fear. I wrote because I had no choice but to.
Now, I write to hold onto myself.
Cancer Cans 
Beautiful Kate. You also write because it is a gift…one that has served you well and one that serves all those who read your work. Thank you.
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Thanks Sal. That means so much to me. I’m trying to get my brain muscle working as best it can! X
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Your brain is beautiful, I love the stuff that comes out of it. It’s had an unfair, uneven battle over the last 18 months, and came out on top! Battle scars are hot!! Embrace them, they tell a story. Don’t be embarrassed or walk away, own the shit out of it! xxx
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You always make me crack a smile. It’s your gift lady and I love you for it xxx
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Kate you are so amazing. In a world where we so often try to conceal our less than perfect selves, mostly for fear of shame or judgement, you so honestly describe the unseen ongoing challenges of living with effects of cancer treatment . Often, once chemo is over, people can easily forget that your ‘battle’ is over (i know you hate cheesy references to cancer). It is confronting for someone so intelligent to no longer feel confident relying on the exact thing that retains all their knowledge.
I hope what I’m saying makes sense. Unlike yourself, I find it difficult to articulate my exact feelings. I suppose what I’m really trying to say is that I appreciate the rawness of your post. Most of all I look forward to one day reading your best selling novel xx
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Thanks so much Sim. Just trying to be as open and honest as I can in the hope it breaks down all the walls we so often put up around ourselves. Thanks for all your comments. Xxx
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oh Kate-that’s scary. I don’t know much but wonder if it will improve as your brain works out other ways, or is it really like dementia? I hope the former. If you can write it sounds like a lifesaver. So glad that you are going for it, Catriona xx
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I’m not sure Catriona. It’s just really frustrating and upsetting at the moment. Other cancer patients have reported the same experience and some notice a gradual improvement over time. SO I’m hoping that with some work, and time, things will improve.
kate x
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Well done Kate. Nice to read of your progress and courage to push on with new challenges – let alone give us significant insights into your thoughts. Love from Mike and Jan
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Great post Kate. Relate in so many ways to what you’ve written here and so eloquently too x
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Thanks Allie. Trying to not get too bogged down in feeling sorry for myself or down on the situation, but just grateful to still be here! It’s not always easy to do though.
Kate x
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I have the double-whammy of both Alzheimers and cancer in my medical history, and I get scared every time this type of thing happens to me. Not sure if it helps, but you are not alone.
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Thanks Kim, that definitely helps to know I’m not alone. I think cancer can feel very lonely at times. I’m finished treatment but struggling with this new kind of normal. trying to take it day by day.
kate x
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Thanks for the great post. I don’t know if you are doing the Tamoxifen thing, but I took a five week break from it in May, and noticed a noticeable improvement in my word retrieval, then a decline again after I restarted in June.
Me thinks the combo of chemo, targeted therapy, Anesthesia, trauma with tamoxifen work together to wreck havoc on brain function. It is like my brain has been squeegeed.
I do think in general I am trending up, however when I am tired especially, words are not my friend.
As for forgetting people, I have actually started giving a disclaimer when I meet people. “It is really nice to meet you, and I have a compromised memory, so if we meet again please reintroduce yourself. Because I am very likely to forget.” When I started back to work at a new job, at first my coworkers said things like “oh, I know I have a terrible memory too.” Until they had worked with me awhile and realized it was actually quite a different thing.
Check out the TED talk with Dr. Amen talking about the brain, and how it heals- it gives hope.
Love from across the blogosphere and across the sea
Xo iris
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Hi Iris
Wow thank you so much for your message – lots of helpful advice! I’m not on Tamoxifen, but I’m on Zoladex and Letrazole so I’m not sure if they are similar in the way the affect the body and brain. I agree with you though that its a combo of everything I’ve been through that has affected my memory and brain function.
Now that i am really aware of it I have started doing things to help myself remember. But I am still hopelessly forgetful and am constantly apologising to people for having to cancel plans and things. Writing is helping a lot, as is being back at uni. I will definitely check out that TED talk. I am buoyed at the knowedlge that our brains are plastic and not fixed once damage occurs.
Thanks for reaching out
Much love, Kate x
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Kate, good to see you. I experienced chemo brain after finishing chemo and it was embarrassing because it happened a lot at work. I forgot names of people I worked with for over 5 years. I am usually not great with names to begin with and that made things more challenging for me. Also, I could be doing a project, and right in the middle of it, I would forget what I was doing. I would stare at the computer trying to remember. Things have gotten better though. I also realize that I am getting older and the list of responsibilities have increased drastically since my dx (overall). Funny, I used to make fun of people who carried a notepad with them everywhere. Guess what? Now I carry one too. I think things will get better for you. Good luck with your writing projects. Please stay well. xoxo
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It instantly makes me feel better knowing I’m not alone with these problems. Thanks so much for your supportive message. I’m adjusting to this ‘new normal’ and hopefully, like you, I”ll notice an improvement in my memory and brain function with time. It’s very frustrating though.
x
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First of all, I feel you completely and this really sucks. Second, it may get better. It took months, but slowly my brain got used to thinking again, remembering short term, and focusing on tasks. It was slow progress, but I stopped noticing it after a while because it got close enough to normal.
Try to forgive your brain when this stuff happens. It’s really frustrating, sad, and PTSD triggering, but try to not sit there for minutes trying to remember the word, move on. Use google. Give yourself the crutches and the handicaps, focus on what you’re trying to do rather than what you should be able to do and find work arounds.
Hugs.
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Hey Kate! I’ve been absent from your blog and my own for so long and I have just tonight discovered this post. You have captured the expeeeince perfectly, and congratulations on going back to uni. My joy has been not just not remembering the word I am trying to say but substituting it for some other totally unrelated word, and not until I have said it do I realise it is all wrong. I asked my best friend to get some medication for me, she asked where it was and I said on the kitchen blinds. She looked at me and said “I doubt that darl!” About mid year the fatigue finally lifted from me and with it some of the word issues. But as is always my style I just blurt out the wrong word when it comes still and laugh. Much love Sus xo
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We have to laugh through it don’t we!
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