Kate Hickman has written an honest blog giving insight into her life with a grade three oligodendroglioma. Kate is coming up to the first anniversary of her diagnosis. She went through surgery, chemotherapy and radiotherapy and her treatment is still ongoing.

How do I keep on keeping on?

I was diagnosed with a grade three oligodendroglioma in July 2016 (it is butterfly-shaped, in both hemispheres of my brain). My original prognosis was extremely poor, but I’m doing much better after surgery in June 2016, intensive whole-brain radiotherapy in August 2016, targeted radiotherapy in November 2016 and I’ve now had 3 out of 6 rounds of PCV chemotherapy since January 2017.

Recently, I have been pondering the question of how I can keep on keeping on, month after month, when I’m really struggling. Using the analogy of walking up a large hill, I’ve said to friends before that every time you feel you’re getting to the top, such as recovering from an operation, or finishing radiotherapy, the next peak or peaks (chemotherapy) come(s) into view. To be honest, I’m tired and bored of this walk and I want to go home! And the view isn’t great from this hill. And where is the tearoom I was promised?!

I’ve been struggling to eat since the start of 2017 and problems keeping things down as chemo kicks in make it even harder, as I normally love my food. I’ve consumed so few calories that I’ve lost over 2 and a half stone (17kg) in 3 months (an average of 3lb or 1.3kg a week). I get cold extremely easily, I think because my body just can’t afford central heating at the moment. I am still very overweight but I’m painfully aware it’s an unhealthy and probably unsustainable way to lose weight. Recently my appetite has improved slightly, due to changes in my anti-sickness medication. I’m also back on a low dose of steroids, which I fought so hard to get off. I still eat very little though.

However, a couple of week ago I tumbled down the hill, losing a lot of progress; the left-sided weakness that I had post-operatively is suddenly back. This means I suddenly have very little strength in my left hand and arm, so it is a struggle to:

• Get dressed (although my husband is getting very good at helping, even with earrings!)
• Type
• Hold a paperback while I read it
• Anything requiring two hands

At the same time, most of the things I enjoy most about life are moving out of reach:

• Running; I now can’t even walk the distance I used to run.
• Watching TV or films; I can’t follow plots.
• Comfort eating; I don’t eat.
• Reading; I struggle to hold the book and turn pages.
• Singing; my choir’s weekly rehearsals are “past my bedtime”.
• Visiting friends; I can’t drive or use public transport.
• Planning things to look forward to; I don’t know if I’ll be well enough.

  So I’m feeling very demoralised.

What next? I’ve been thinking about what pleasures are available to me, and I’ve come up with:

• Day trips to see beautiful scenery or cute/ interesting animals.
• Listening to others’ music.
• Planning things to look forward to that are flexible, depending on how I am.
• Sending cards and presents to those I love.

I recently shared this list with friends and family and was overwhelmed by offers to take me on day trips! 

Knowing I’ve helped people. As a humanist, I believe that, “in the absence of an afterlife and any discernible purpose to the universe, human beings can act to give their own lives meaning by seeking happiness in this life and helping others to do the same” - British Humanist Association. It’s very important to me to feel that, when I do die (hopefully no time soon!), I will leave a legacy of good deeds, kindness and love.

Kate Hickman

June 2017