WHAT’S IMPORTANT TO ME AS A PATIENT WITH NEUROPATHY
NHS Choices says Peripheral neuropathy develops when nerves in the body’s extremities, such as the hands, feet and arms are damaged. The symptoms depend on which nerves are affected.
It then goes on to admit that toxins in some drugs can cause this, but mostly focusses on diabetes as the main cause. But finally, the NHS is following America’s lead and admitting that Neuropathy is a side effect of cancer drugs – but it has taken years for them to admit this.
During cancer treatment I started getting classic neuropathy symptoms. I mentioned these to my doctors, but nobody took any notice. So to get information I turned to US hospital websites, and discovered it is a complex condition, with problems ranging from loss of sensation, pins and needles, dizziness etc. It can be described as Neuropathy or Peripheral Neuropathy – I haven’t yet worked out which is what. But as the cartoon says, lack of funding means lack of treatment. And this can mean a long road to finding correct care.
Treatment on the NHS
OK – I am an NHS patient, so I should be used to the production line. I’ve learned when the production line lands me in a doctor’s consulting room, to grab the opportunity and get my needs in first. If you suspect you have Neuropathy, take with you print-outs from a reputable website showing what Neuropathy/Peripheral Neuropathy is. You would be surprised to know how many NHS staff will pretend they know nothing about the condition; I suspect this is because they don’t have the time to treat us properly.
The NHS doesn’t expect we’ll ask questions, hence she was left feeling short-changed with no reason given for her frightening dizzy spells. Instead she was fobbed off with platitudes. And worried. Therefore, if we want action, I reckon we need to guide doctors ourselves..
10 years out from her initial chemotherapy experience, Sherry gets ‘twitches’. “I poured a cup of coffee and go to set it on the table, but at the last moment my hand twitches and the coffee slops all over. I usually swear when this happens – it’s better than heaving the damn cup at a wall – but the swearing does help, especially after ten years of this.”
Falling is also a problem. And like many of us, she worries what she would do if this happens, but as she says, “while all these issues are bothersome, I have not broken any wine glasses recently or fallen flat on my face“. I suspect we get used to avoiding situations that might cause problems, and go round with fingers crossed.
And as she says, “I’m still here”.
How I found treatment
- Simple exercises may help cancer survivors struggling with peripheral neuropathy, a common cancer treatment side effect that causes muscle weakness, decreased feeling and trouble balancing.
- While exercise can’t make peripheral neuropathy go away, studies show it can help minimize pain and improve strength and balance, says Whittney Thoman, an exercise physiologist at MD Anderson. Thoman stresses the importance of talking to your doctor before starting any new exercise program. He or she may have advice specific to your treatment or cancer. (This is aimed at Americans – we may not have that luxury).
Use a stable environment
Because neuropathy affects your balance, it’s important to exercise in a stable environment where you’re less likely to fall down or drop something. Hence, for me, exercise in a hydro pool was excellent. “Anything where your body is stable is safer,” Thoman says.
Work on balance
To help improve your balance, Thoman recommends doing exercises that will help strengthen your stabilizing muscles.
“It doesn’t have to be anything complicated,” she says. “Try standing on one foot while you brush your teeth. If you mastered that, try standing on one foot with your eyes closed.”
Don’t overdo it
Depending on your cancer treatment, you may need more time to rest between exercise sessions, Thoman says. Give yourself 48 to 72 hours to recover between resistance training sessions.
Following all of these steps can help you ease neuropathy symptoms.
“Exercise can’t undo neuropathy,” Thoman says. “But it can make a big difference when it comes to functionality and daily life.”