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My Cancer Story

 

IF I ONLY KNEW THEN

When asked to write of my ‘cancer experience’ it was tempting to go down the usual route of tales about hair falling out, tiredness and horror stories of puking, but I want to approach this from an angel not often voiced…………..The after story.

The after story starts, when conventional treatments stop.  When they have finished cutting, poisoning and burning you, all in the name of medicine. When the support disappears and the hard work of trying to figure out who the hell you are, now begins.

Its not as gut wrenching, its not as heart braking but it is a story of suffering and searching for answers that leave many of us feeling broken and without hope.  It may be a story you do not want to read but its one I need to tell, because this is not just my story.

By August 14th 2001 at the age of 44 yrs I had been through all the normal recommended treatments for breast cancer.  I actually faired better than most during this and came out the door after my last radiation treatment, with a spring in my step and a smile on my face.  We were headed off for a trip across Canada in an RV, to visit my younger son who was living out west.  I may have been bald, tired and pale looking but it was over!

All was good with the world………..or so I thought.

Banff Swimming after radiation

By the time we arrive in the Rockies town of Banff, I was beginning to experience pains in my spine.  Determined not to spoil this trip I kept this to myself, even going for bicycle rides in the mountains and jumping like a school child into the freezing waters of the Banff river.

 

It was not until a particularly long walk to the top of a mountain, when the pain struck sharp in my breast bone, that it became simply too much and I could no longer hide it.

This was just the beginning of what was to become a 7 year struggle to find out what was wrong with me and how it could be treated?

I saw specialist after specialist, had scan after scan and NO ONE could diagnose my ever worsening spinal pain.  I also started to get severe head pain, accompanied by all sort of twitching muscles, numbness and vision problems and eventually absent seizures.

Slowly I was becoming disabled!  I was being forced to give up all the sports I love to do; I could not work or drive and some days I could not even walk.

Things reached a low when I lost control of the muscles down my lower left side; my left thigh and butt muscles were simply no longer responding.  My back was trying hard to compensate but I was falling over and in constant pain, heading for a wheel chair and no one could (or would) tell me why.  Even my cancer doctors just looked for cancer and when they did not find it, they basically brushed me off.

It seemed as if no one wanted to actually dig too deeply or say what they thought might be the cause, they seemed almost scared to, shrugging their shoulders and telling me they did not know what to do.

I was being made to feel like a fraud or some sort of hypochondriac and getting no real support.  AND during all of this, I was suffering the chemo induced mother of all menopause’s ……………life was shit!

As things went from bad to worse, my family doctor became more concerned over the pain in my head; eventually sending me to see a top notch neurologist in the city.  After yet more scans and tests it was he who told me, that in fact, I was having TIA (small stroke like) episodes, that were originating in my brain stem. 

He came right out and said, what no one else would, that is was probably the result of radiation damage, weakening the blood vessel in the basilar artery.  Also that he should be able to help stabilise things a little, with the use of an older style drug, which would hopefully lessen the attacks.  At last a ray of hope, however he had no idea what was causing the intense spinal pain………..damn!

It was around this time that I stumbled upon what was to be a way forward for me.

It was not from the traditional medical world but from alternative practitioners.

While the brain stem episodes had lessened somewhat my spinal pain was horrible! I take pain relieving drugs only as a last resort, so I sought out pain relief from an acupuncturist.  He started to work on my spine pain and also helped rid my body of the toxic chemo chemicals my liver and kidneys were hanging on to.  The pain did ease but it only ever last a few hours and then was back with a vengeance. Any movement at this point was excruciating, even stirring my coffee or indeed lifting the cup to drink was just horrible.  So he recommended me to a friend and colleague, an Osteopath & Massage Therapist who specialised in difficult cases.  She told me at the time she felt the problem lay in the spinal membranes, that for some reason they did not want to stretch and move as they should and were twisting around my spinal cord crushing it and getting stuck in the vertebrae.  Also the smaller muscles and ligaments along the spine were like “steel rods” and in a permanent fight or flight state (I have since found out this is a probably side effect of chemotherapy on the CNS).

She began slowly and painfully to work on me, performing regular deep tissue massage therapy, Lymph drainage & craniosacral therapy. Although really painful, it was definitely beginning to help as I slowly started to move more easily, however she was not able to keep the misplaced and twisted vertebra in place. So we added an expert chiropractor who was a specialist in the activator method of spinal alignment and I started to see them all on a very regular basis.

My only remaining problem was the lost of control down my left side for which I turned to very intensive physiotherapy, requiring me to work hard several times a day, for 6 months.  It took around 3 months of sweat and tears before I eventually got the first twinge, once that connection was made, it was uphill all the way.

 

I am not back to my pre cancer days by any means.

I am still in pain most days and I still go regularly for my treatments but I can now at least move around, albeit more slowly and not so far, I can work and I can drive.  The TIA episodes still happen but they come on less often and I get warnings, so can take appropriate action.  I guess one day it could be a more devastating episode but that’s not today.

I also found out just last year, that the ‘medical profession’ finally found a reason for my spinal pain on an MRI.  They say I have epidural lipomatosis, which is a very rare condition where excess fatty tissue, grows on the epidural membrane layer and causes spinal cord compression (which is what the Massage Therapist told me years earlier).  This condition usually occurs in people who have used steroid over a long period or obese people (of which I am neither), however there have been a few cases of this happening to people who have undergone……………………..wait for it, radiation treatment for cancer.

 

In the 10 years since my treatments I have learnt much about health and pain but also about the business of cancer.  There are many untruths out there masquerading as fact and many of them coming from the medical profession itself.  It is very difficult for a layperson whose world has been turned upside down, to get a truly reliable source of information ……….it is a crap shoot out there.

I have learnt how to find the truth.

I no longer have ANY radiation based scans. What ever radiologists may say, there simply is no such thing as a ‘safe dose of radiation’ and this includes mammograms which I have refused for the past 6 years.

I do not support any cancer foundation that promotes mammograms, many are doing so right now, trying to convince younger women, that this is a good thing, when in fact they are even more unreliable in younger women (at 44yrs my easily felt lump, did not show on the many mammograms they took).

There has to be a better way and it will not be found, while we accept what is currently on offer.

I fight my cancer with knowledge and good health.  I eat organic, fresh foods; I have removed all chemical based cleaners from my home and am having my mercury filled fillings removed.  I have rearranged my life to be less stressful and I take time to enjoy it.

If and this is a very small  if, my cancer ever comes back………………… I will be heading for Mexico and a kinder way to deal with it.

 

Coach Lin

www.walkawayfromcancer.com

All rights reserved Helping Hand -Life Coaching 2011

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