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 those treating me, 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.

We are often fobbed off with “no-one else has reported this”.  It has taken years, but at last the NHS recognises Neuropathy as a long-term side effect from treatment – but is often unsure how to treat it
It took me years to get my British Oncologist to acknowledge that Neuropathy was a recognised side effect in other countries. Eventually, I transferred myself to King’s College Hospital, because they admitted the condition existed.  And yes,as a patient you have the right to change consultants, but not many people know this.
Lack of consultation time denies us proper care
LISTEN TO  US.  I am not just any patient – I am me. I am unique;  and it’s time ‘they’ wised up to this.  Let’s establish ground rules so we don’t go round and round wasting any more of my time denying side effects exist.
Recently a neighbour called the Ambulance twice.  And ended up in A & E both times.  She had previously had three TIAs (a layman might call these mini-strokes).  So when she became dizzy, she thought this was another TIA.  After exhaustive tests, she was told she was ‘clear’., but no-one actually took account of the fact that she has Neuropathy – and there in the side effects is listed possible dizziness.

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..

Neuropathy is often overlooked
Neuropathy has shot my balance to pieces; watching me walk anyone would think I was drunk.  Exercise on land can result in my leg shooting out and tumbling me on the floor – not good if you have osteoporosis (brittle bones).  So hydro is brilliant as if I fall over the water cushions me.  Only thing is, it’s the easiest service to close when a hospital needs to balance its books.   So whenever I see a consultant I ask them to include hydro in their treatment recommendations – a bit like using drops of water to wear away stone – but it sometimes works.
Dr. Google as the villain
Doctors supposedly dislike the search engine.  Used carefully, we can learn an awful lot, and then question why aren’t we getting the appropriate treatment.  When I got ‘clumpy feet’  (the only way I could describe the sensation) I went on the web and looked up ASCO (American Society of Clinical Oncology) and other US hospital websites.  And discovered Neuropathy.
Everything coming up described my symptoms exactly.  I mentiond this at my next hospital appointment when the doctor laughed his head off and chided me for depending on Dr. Google.  This was at The Royal Marsden, but luckily I persisted and eventually this hospital now acknowledges the condition.  But I’ve since moved on and get treatment at King’s College, where they are trying to make up for lost time.
Why Neuropathy? 
I am NOT medically trained, but my very unscientific theory on cancer treatment is so many strong poisons are needed in treatment to kill off the cells, that our bodies are open to all sorts of other problems.  Hence the side effects we get.  In the UK it seems to be something we get on with, show a stiff upper lip, and as my Oncologist said, when I commented, “well, you are alive, aren’t you?”
Luckily there are others who get caught out too – and an article by Sherry Ballou Hanson on the US Cure website made me laugh. Sherry is a three-time survivor of ovarian cancer and says, “with neuropathy as a result of treatment comes a whole host of issues. The first one I can think of? Oops, there goes the wine! In more ways than one, actually, as wine is probably one of the last things you can enjoy while undergoing chemo. And not only can you not enjoy it, but when you try to lift that glass onto your kitchen counter, neuropathy will cause you to instead bash it against the edge. Hopefully this was not your special glass. If you try it again while in treatment, pick the cheap old glass you got at a yard sale. No big loss. The bashing goes on for a while but it does get better.”   Bless her – she is so right!

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

According to the US Mayo Clinic, signs and symptoms of peripheral neuropathy might include:

  • Gradual onset of numbness, prickling or tingling in your feet or hands, which can spread upward into your legs and arms
  • Sharp, jabbing, throbbing or burning pain
  • Extreme sensitivity to touch
  • Pain during activities that shouldn’t cause pain, such as pain in your feet when putting weight on them or when they’re under a blanket
  • Lack of coordination and falling
  • Muscle weakness
  • Feeling as if you’re wearing gloves or socks when you’re not
  • Paralysis if motor nerves are affected

If autonomic nerves are affected, signs and symptoms might include:

  • Heat intolerance
  • Excessive sweating or not being able to sweat
  • Bowel, bladder or digestive problems
  • Changes in blood pressure, causing dizziness or lightheadednes
To discover what I needed to do, I went to the invaluable MD Anderson website. This cancer hospital is acknowledged by most as THE cancer hospital, and their Kelllie Bramlet says:
  1. 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.
  2. 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.”

It’s Complicated
For treatment, you need to make sure your GP refers you to a specialist who understands cancer induced neuropathy.  I’ve lost count of the number of ‘neurologists’ whom I have seen – but now I am lucky enough to be a patient of a visiting Professor from Spain, who tells me “I think I can help you”.  First thing, he does NOT believe in the Clinic system;  if I have an appointment with him, I see him – not someone else who happens to be on duty.
Then, if I get a new symptom, I Google it. That’s how I found out my neighbour’s dizziness might be a symptom.  She and I aren’t stupid.  She knows that it might not be, but as A & E couldn’t find a cause, she talked to her Neurologist and they are working on it.
I also found out that blood pressure readings can ‘yo yo’, so now whenever I have a high one, I ask the nurse to do it again – and then explain.  Most times it drops on a second reading to an acceptable level.
There is still a lot to learn about this condition, so the more we talk about it the better.

 

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