Some time around November my peripheral neuropathy returned with a vengeance. For the uninitiated, this condition is a common side effect of chemotherapy. The variety of chemotherapy they gave me is designed to knocking out all the cells that reproduce quickly. That includes the cells that form hair, fingernails, the lining on your mouth and the surface of your tongue. This is why we go bald and develop ‘metal mouth’, where everything tastes strange. Unfortunately many people also get a kind of dieback in the nerve endings at the extremities of the body.
For me, peripheral neuropathy turned up just before my last chemotherapy session. My final dose was reduced but I still wound up with uncomfortable pain in my hands and feet. It gets worse than this. Some people are crippled by peripheral neuropathy and others find doing even simple tasks with their hands acutely painful.
Nerve pain is unlike any other kind of pain. It can be difficult to describe. Most commonly it’s compared to ‘pins and needles’, or that aching numbness you get if your circulation to your hands is compromised; if you ever tried sitting on your hand as a kid you’ll remember the exquisite numbness as the blood supply returned. Sometimes my hands feel like I’ve just removed them from iced water, and other times they feel hot and itchy. It all went away when they gave me gabapentin following the bilateral mastectomy. It’s a great drug for nerve pain but in my case it also affected my brain in unexpected and unpleasant ways. Gabapentin is also used to treat epilepsy so this was hardly surprising. In my case, I started coldly and calmly contemplating suicide. I wasn’t depressed or unhappy. Taking my own life just started to seem like a logical option. It was a scary time.
Denied the drugs that usually help with the condition I’ve tried various supplements, including fish oil, evening primrose oil, ginkgo and vitamin D. I also practiced daily yoga and stayed away from inflammatory foods, including gluten. At some point my hands and feet returned to normal. The pain was gone. I should have kept a journal. Perhaps I’d know what to do now that the pain has suddenly, inexplicably returned.
The trouble with nerves is that they grow very slowly. My radiation oncologist told me that things wouldn’t be done for about eight years. This means that establishing a causal link between anything I did or took is problematic. Since November I’ve been trying to diagnose what caused the relapse with no luck. I’ve figured out that avoiding sudden changes in temperature helps, so maybe summer’s air conditioning was a trigger. Who knows. Of course I hit the internet trying to find clues. Acupuncture kept turning up as a possible treatment.
I’ve had acupuncture only once before. When I had fibromyalgia I saw a local doctor who put needles into my pressure points. These are acutely painful spots on your body that occur in a pattern that is typical of this condition. Having needles stuck in them was enough to bring me to tears. I had two sessions before deciding that even if it was helping I would rather have the constant dull ache of fibromyalgia than the intense torture of acupuncture.
Then I had a series of people randomly mention a local acupuncture practitioner, not knowing I was considering treatment. My friend, Maryanne, would say the universe was speaking to me. In any case, I decided to make an appointment.
Tim, the acupuncturist, is a warm, friendly person and easy to like. He asked me a series of questions about my history and symptoms before taking my pulse. Somehow, this pulse taking allowed him to diagnose that my energy levels were low and that I needed to express grief. The skeptic in me observed that these would be fair assumptions to make about anyone that was coming out the other side of a bilateral mastectomy and treatment for cancer. He explained that according to Chinese medical tradition, energy is stored in the kidneys and mine are running on empty. This means there is not enough energy to reach my hands and feet. He also detects ‘lung blockage’ which is how he has diagnosed grief.
I have family members that would roll their eyes and scoff, but if there is one thing I have learnt throughout my treatment it is this: We have no idea what we don’t know. I had the kind of prognosis that left doctors convinced I would no longer be alive, and yet here I am. I have no doubt that my massage therapist has played a large part in my survival and she ‘talks to spirit’ and allows my body to tell her what it needs. Who am I to argue?
So I climb onto the table and let a stranger stick pins in me.
The first few are surprisingly painless. No really. Completely painless. I can feel a sensation that is similar to someone resting the head of a pin against my skin, but no more than that. The next few are more noticeable but still not painful. Tim asks how they feel. The only word I can find is ‘weird’. Tim tells me that’s the word most people use. It’s a very odd sensation. I get a sudden pressure in my head which Tim relieves with a bit of massage. Once there are a few pins in my feet and legs and a few more in my hands, Tim leaves me for ten minutes or so to allow the acupuncture to do whatever it does. I am very conscious of holding myself still because the idea of bending or breaking a needle is horrifying. I breathe and practice a bit of light meditation. It helps.
Tim returns, removes the pins and processes my health fund rebate as I pay. Very handy. I make an appointment to see him the following week.
In the week that follows I’m conscious of the risk of observation bias. It’s possible that any shift in the peripheral neuropathy will be attributed to the acupuncture but with a sample size of one and no control, how can I be sure. My hands don’t feel as tingly, but they still ache. I find I have more energy and acknowledge that this could be coincidental. I watch a movie that a friend recommends called ‘I miss you already’, which is all about a woman dying of triple negative breast cancer (okay, maybe the universe IS talking to me) and I have a really good cry. I realise that when you go through treatment it’s enough to just get through each day. I am also aware that my policing background taught me the unhealthy habit of parking my emotions rather than dealing with them in real time. The movie helps me to grieve. I feel much better the following day and every day since.
My second visit is much the same as my first. Tim takes my pulse again and seems disappointed that my kidney tanks remain empty. I tell him that thanks to my improved energy I managed to spend a whole day out in the garden, hauling and placing mulch. He politely tells me about patients he has treated with chronic fatigue that undermine their own treatment by rushing to do all the things they haven’t been able to manage. I get the message. Rest, rest and more rest until I see him next time.
There are more pins on the second visit, including two at my neck that are painful. Tim apologises and explains that instead of refilling my kidneys, all my energy is rushing to my head and this is why I have experienced pressure during both treatments. I notice that the pressure in my head has subsided since the pins went into my neck. Perhaps it’s like that old joke about stomping on someone’s toe so they don’t notice their headache.
Following the second session I have a massive sugar craving and I feel extremely weary. I eat chocolate and go to bed. I’ve booked another session. I’ll let you know how it goes.
I’m not sure how much of this treatment is about the needles and how much of it is about the talking. I’ve been encouraged to grieve and rest and both of those are helping. I’m also paying close attention to my symptoms to see if I can identify any contributing factors. Alcohol is the only clear villain. I knew that.
I’ve written before about my ongoing relationship with alcohol. It reminds me of low level domestic violence. I enjoy the first drink, and the second. If it was possible to just have those two drinks once or twice a week then I would be complying with the new standards for anyone that has had breast cancer. The trouble is that alcohol lowers impulse control so any time I have the first two I usually find myself continuing to drink throughout the evening.
The honest recommendation is that we not drink at all, because alcohol is a known carcinogen, and if we do drink to limit it to half a bottle of wine a week (or the equivalent). This is a compromise. My oncologist tells me there was a lot of debate about just issuing a statement against all alcohol but they are realistic and believe that setting some kind of limit means we’ll all think more carefully about our drinking. This is a bit like telling a smoker to cut down.
I am very familiar with this dance. I tell myself that I will limit my drinking to X amount or to X days or X circumstances only to break my own commitment, feel remorse and recommit. I used to do exactly the same thing with cigarettes. The time is coming when I will give up alcohol (even typing that was hard and I wanted to type ‘consider giving up alcohol’ but caught myself in my own delusion). Just like cigarettes, I anticipate a few false starts before I move towards a healthier, happier life, free from post-drinking remorse. Just to be clear here, I’m not talking about binge drinking or hangovers or behaving badly. My drinking behaviour is what the vast majority of my friends would consider normal. That in itself is a worry. We used to smoke at our desks at work too, and while we were driving around in police cars. Times and standards change.
The trick for me with cigarettes was that I became sick of giving up. I used to joke that eventually I gave up giving up and that might be just the trick for alcohol. Stop. Enjoy the alignment of my behaviour with my values. Celebrate that unlike cigarettes, giving up alcohol will actually help me to stay a healthy weight. Find friends and activities that aren’t associated with alcohol and, at least for a time, avoid friends and activities that are. Except my husband drinks wine! I wonder if it’s reasonable to ask him not to drink at home for a while, just until I find my feet. Is that any different to asking him not to bring chocolate home when I’m trying to lose weight? I guess it never hurts to ask.
Oh wait. He turns 60 next month! How could anyone celebrate a birthday without alcohol? And that right there is the problem. It’s so much a part of our culture that deciding not to do it is seen as just a bit odd. I’ll just tell everyone I’m the designated driver. That should work.
I notice that even as I write my brain throws up objections. My daughter gets married this year. Won’t I want to toast the bride and groom? How about afternoon wine on the verandah with my husband? Do a really want to give up what has become a ritual that connects us after a busy day?
I have a cousin who gave up drinking some years ago. She tells me that it’s a grieving process. Perhaps that’s another layer to all of the various layers of my grief. My inner three year old wants to throw a tantrum and insist that I ‘deserve’ alcohol.
Maybe I need to give her a big hug and explain that I deserve good health much more.
I know there will be days that are tough….thats part of normal life anyway, but the feeling of liberation the I have today far outweighs anything else. I have been and are blessed in SO many ways, how dare I complain when there is so much suffering by those who are displaced by war, greed and the push for power. 