How I found my way to...

Chemotherapy saved my life, but it left me with a debilitating side effect—chemotherapy-induced peripheral neuropathy (CIPN). For those who’ve never experienced it, CIPN can feel like living inside a body that is unpredictable and constantly painful. There were times when it felt utterly unbearable, reducing me to tears. The thought of being able to jog again, or even drive, seemed out of reach – until Marie, one of my 5K Your Way friends spurred me into actions, telling me that things can be done to relive CIPN.  She encouraged me to ask my consultant for a referral to the Late Effects Clinic, which I requested at my next appointment.

In keeping with the concept of ‘pay it forward’, I want to share my journey of finding my way back to jogging and driving, through persistence, daily exercises, and a shift in mindset.

The Challenges of Living with Chemotherapy-Induced Peripheral Neuropathy 

The symptoms of CIPN severely impacted my daily activities and mobility. I experienced:

• Prickling, pins and needles in my hands, feet, and lower legs.
• Burning, shooting, and cutting pain in my feet, making walking incredibly painful.
• A heightened pain response to things that shouldn’t cause pain, like socks or even a blanket on my feet at night.
• Times when I couldn’t feel something that should be painful, such as water that was too hot.
• Decreased proprioception, meaning I often didn’t know where my feet were. This caused me to trip, stumble, or even walk with one shoe off without realising it.
• Impaired fine motor skills, such as being unable to do up buttons or fasten jewellery.
• Muscle weakness, making it difficult to stand up without support.
• I also found myself visiting the bathroom frequently, as I often didn’t feel the normal sensations of needing to go.

Despite these challenges, through the advice of the Late Effects clinic, I found ways to manage my condition and gradually take back control of my life.

 

Changing My Mindset

One of the first breakthroughs came from speaking to Jasmin at the Clinic who helped me realise that I was often “catastrophising” my pain. When the pain hit, my immediate response was, “This is too painful, I have to stop.” But I started to reframe my thoughts. Instead of assuming I had to stop, I would think, “My brain is getting the wrong message from my nervous system. Let’s have a go and see what works.” This simple shift in mindset gave me the confidence to try different activities – albeit with caution.

I began practicing positive self-talk and focusing on what I could still do, rather than what I couldn’t. This laid the foundation for me to start exploring small steps back to mobility.

Daily Toe and Foot Exercises

Next, I established a routine of toe and foot exercises that I practiced several times a day, no matter where I was – even as a passenger in a car. These exercises helped improve my balance and proprioception. After consistent practice, I began to notice remarkable improvements:

• I regained the ability to know where my feet were – and whether my shoes were on or off.
• I could stand in the shower without fear of falling.
• I could walk in a straight line and appreciate the scenery without tripping.
• I was able to walk on uneven surfaces and have a duvet on my feet at night – something that had been impossible for over two years.
• I haven’t experienced the “burning, shooting, and cutting pains” or “pins and needles” sensations for many months – only a slight “fizzy” or “tight” sensation in my feet.

Here are some of the key exercises that made a difference:

• Toe Spreads: Lifting and spreading my toes apart, which helped improve mobility in my feet.
• Side Toe Taps and Toe Curls: To regain control and strength in the toes.
• Foot Somatosensory: Using self-massage with equipment like a ball, roller and spiky mat.
• Balance Exercises: Including standing on a wobble board and walking on tiptoe to challenge my balance and proprioception.

Finding My Way Back to Driving after Chemotherapy-Induced Peripheral Neuropathy 

Driving had seemed impossible for a long time. I couldn’t feel my feet on the pedals, which made driving incredibly dangerous. But after months of regular toe and foot exercises, I was able to attempt driving again.

The first time I sat behind the wheel and drove a short distance, it felt surreal. I could feel the pedals beneath my feet again. It was a milestone I had long feared I might never reach, which restored the sense of independence I had been craving. Since then, I’ve been driving more frequently and confidently.

Jogging and the Road Back to Movement after Chemotherapy-Induced Peripheral Neuropathy

Jogging also seemed like an impossible dream at the height of my chemotherapy-induced peripheral neuropathy (CIPN). But thanks to the support of Move Against Cancer’s 5K Your Way, I gradually worked my way back to longer walks and eventually a little jogging. 

During walks and jogging, I still pay careful attention to my surroundings, practicing what I’d learned from positive self-talk to prevent myself from giving in to fear. There are still difficult days, but I’ve learned to push through with the support of 5K Your Way – along with my own stubbornness and self-compassion.

In short, 5K Your Way is a support group with a difference. On the last Saturday of every month, groups meet at over 90 parkruns around the UK and Ireland. You can participate in your own way—whether it’s walking, jogging, running, cheering, or volunteering. Afterward, there’s always a coffee and a catch-up, which fosters a strong sense of community and connection. This inclusivity was key for me. No pressure, just support.

The group welcomes anyone affected by cancer—those living with or beyond cancer, family, friends, those who have lost loved ones to cancer, and healthcare professionals. It’s run by volunteer ambassadors, and that supportive atmosphere really kept me going. For anyone on a similar journey, I can’t recommend it enough.

To find out more or register for 5K Your Way, visit Move Against Cancer.

“Through daily actions I’ve reclaimed so much of my life. I no longer let the discomfort define me or hold me back from the things I love.”

Hands Not Forgotten: Daily Hand Exercises

Although my hands weren’t as severely affected by CIPN as my feet, I still completed hand exercises every day to maintain fine motor skills. These exercises were recommended by Jasmin at the Late Effects Clinic and have been incredibly beneficial:

1. Pad Touches: Touching the pad of the thumb to each finger and moving the finger down to the base of the thumb.
2. Finger Taps: Tapping each finger on my lap, lifting and tapping each one in succession.
3. Thumb Circles: Clasping my hands loosely and circling my thumbs around each other without them touching.
4. Ball Roll: Rolling a small ball between my palms and along each finger to stimulate receptors in my hands.
5. Pad Circles: Circling the pads of my fingers around each other while maintaining contact.

These exercises helped maintain coordination in my hands, and I continue to do them as part of my recovery routine.

Using Electrical Stimulation

I also tried the REVITIVE circulation booster with electrical stimulation, but I found that it made the weird “fizzing” and tight sensations in my feet worse. I now use it once or twice a week on a lower setting, which seems to be more manageable for me. Interestingly, this device has completely cured my husband’s night cramps caused by Parkinson’s, so it’s been a useful tool in our household, even if it requires careful moderation for my CIPN.

Additional Therapies That Helped

Alongside these exercises, a few other therapies and practices helped in my recovery:

• Massage Therapy: Monthly sessions with Jennie, an Advanced Clinical Massage Therapist (ACMT) helped relieve pain and improve circulation in my feet.
• Massage Boots: I used these every day to stimulate blood flow and ease tension.
• Bamboo Socks: Wearing these soft, non-irritating socks made a big difference in reducing the pain caused by regular socks.

Moving Forward

Living with Chemotherapy-Induced Peripheral Neuropathy is still a challenge, but through daily actions, I’ve reclaimed so much of my life. I no longer let the discomfort define me or hold me back from the things I love. My journey back to driving and jogging has been long, but it’s taught me the value of community, patience, determination (aka stubbornness!) and the power of small steps.

To anyone out there struggling with CIPN: don’t give up. Try different strategies, build small routines, and focus on what you can do. Over time, those small wins add up. Before you know it, you’ll find your way back to the things you once loved.

If you need more details, please feel 100% free to PM or email me at debra.willoughby@5kyourway.org