One man’s journey

I wonder what would have been, had years behind been changed,
Had my health been robust, and my days not rearranged.
Maybe we’d have traveled more, enjoyed some different places,
Met people, saw the ways they lived, whatever life encases.
Such things now I’ll never know, how ever long I ponder,
Five years ago I found a road, though not by choice, to wander,
Potholed and strewn with stones, and rather rough to travel,
When the health I used to know, all started to unravel!

Cardiologist, physician, oncologist and of course G.P.
Haematologist, urologist, neurologist were some I had to see.

I’d contracted two diseases, both considered rare
One I thought was fair enough, but two just wasn’t fair!
There was an underlying cancer, a name that’s not familiar
I found it hard to say, Waldenstrom’s Macroglobulinemia.
It’s a form of leukaemia, but there was more to tell
I had a secondary disease, – Amyloidosis Type L.
Diagnosed as severely ill, chemotherapy ahead,
Treatment was rather urgent, or I could well be dead!

That was a shock to the system, what thoroughfare was this?
My world was turning upside down, what had gone amiss?

My afflictions were identified, and could be called by name,
Survival became imperative; days could never be the same!
Eighteen months had passed, before the source was clear,
Nose bleeds and fatigue, were symptoms for a year
Atrial fibrillation was treated, but still I did regress.
Biopsies and tests of nerves; helped me to progress.
Peripheral neuropathy and nerve function was quite poor.
Such were the doctors’ findings; I found there was much more!

Kappa free light chains in the blood, showed protein in excess,
Twenty four hundred scored, when twenty would impress.
Major organs had been damaged, but worst of all for me,
The loss of function I now had, a forever thing would be!
My immune system was ailing, wounds took weeks to heal,
I was frightened of the future, wondered how I’d feel!
Wondered what the treatment held; how it would change my life,
And most of all what impact, it would have upon my wife.

Five hours in the chemo chair became an expectation,
Seven cycles were in store, each three weeks in duration.
There were multiple effects; food had lost its taste,
Balance became unsteady, mouth allergic to toothpaste
Sleeplessness caused by steroids, fatigue became the norm,
Spent hours upon the settee, to help weather the storm.
Found life’s perspective hard to keep, the journey even longer.
To cope with so much stress, meditation kept me stronger.

The effect on Joy was rather tough, her life on hold for me,
As chauffeur, carer and a wife, Joy would share my destiny.

Though the road ahead was potholed, I knew I had to cope!
The light chains were coming down, which was a cause for hope,
Should stronger chemotherapy be unlikely to succeed,
My stem cells would be collected, to provide for further need.
The collection was successful, a cause for jubilation.
The cells were stored in ice, for future restoration.
I did however lose my hair, an outcome of the process.
Energy had to be restored; it was time to convalesce.

Can’t use illness to excuse; must keep all that I appreciate,
Continue doing what I can, endeavouring not to deviate!

Another challenge reared its head and took my thoughts elsewhere,
As member of a lawn bowls team that had become the premiers
I laughingly gave my team the proud title of ‘gazelles’,
Fleet of foot and dewy eyed, as those out there could tell.
We could never win a footrace, our handicaps too great.
We were absolutely chuffed, in a euphoric state!
The win became a pressure valve, the moment was to treasure,
After all my traumatic times, winning was a pleasure!

Three rounds of stronger chemo, were then scheduled for me
To reduce the kappa light chains, still rampant and so free!

The increase in chemo dosage left me uninspired,
My capabilities diminished and I was very tired.
I lost my hair and strength, my mobility as well,
That journey had no map as far as I could tell.
Joy was always there for me each minute of each day,
Her support was never ending in so many varied ways.
I relied on her love and care, so strong and so unfailing.
I was pleased that she was there, though clearly I was ailing!

Imagine my disappointment when light chains were escalating,
Stronger chemo no longer worked; no longer regulating!
I was absolutely devastated when this news was told!
What was there left to do? What would the future hold?
A bigger shock was then announced, I had eighteen months at best.
The implication was enormous. How could I face this test?
Would the haematologist approve a cell transplant?
In spite of all the risks involved, would she my wishes grant?

The only way out was through, there were no shortcuts,
Each challenge met head on; there would be no ifs and buts!

Tests were done and analysed, a decision to infuse,
Stem cells they’d collected, now was the time to use.
I accepted the belief that the transplant would be tough,
The biggest challenge faced so far; – would this be enough?
I gathered my resources to improve my quest to live,
I knew a positive approach would be imperative!
September twenty twelve was a marker in my quest
To stabilise my illness, an outcome considered best.

Chemo proved to be effective, bone marrow was destroyed,
Into this impaired system, new stem cells were deployed.
The next ten days in isolation, immune system very low,
A time that was endured, as stem cells began to grow.
All I wanted was to sleep, and stem cells to rejuvenate.
When I was at my lowest ebb, all help I did appreciate,
Hospital staff I must applaud, their care was just superb,
To be there when I needed help and when not to disturb.

Focus on the moment, treasure the here and now!
The future would itself unfold; mine not to worry how!

Family support was very strong, throughout this tough ordeal,
Always being there for me and sharing how we feel.
Though the road ahead was tough, we’d all see it through
However in the next few days, so much there was to do.
I had to focus on the ‘now’, to give it my best shot,
Adopting a positive outlook I knew would help a lot!
I’d survived the stem cell transplant, as I was sure I would,
With light chains under thirty, which was considered good!

Friends I had grown to know, across the passing years,
Expressed their love and care for me; support that I held dear!

Home again to recuperate, to gather strength anew,
It took a while to realise that changes would be few.
That wasn’t time for looking back as damage had been done,
A new world awaited me, new battles to be won.
Mobility had been impaired, neuropathy in legs and hands,
Stamina was non-existent, hard to walk and stand.
Then I caught pneumonia, my immune system being low,
Accepting limitations, I had to learn and know!

I found I couldn’t ride a bike, my balance was not there,
I couldn’t walk a city block; hard not to despair!

My stability was so poor I had to sell my boat;
No longer could I swim, and keep myself afloat.
By changing to an auto, driving became a breeze
I could still tow the caravan, accomplished with ease.
Travel to South-East Asia, was a special time indeed,
The support received from locals, met my every need.
It was nice to be free of chemo, life was more my own
Challenges still lay ahead, but what, just wasn’t known!


Joy purchased a mobility scooter, especially for me,
It certainly increased my range, and things to do and see.

One could be forgiven, for believing I was fine,
Though light chains were stabilised, all was not sidelined.
Incontinence was a problem; function was impaired,
Bladder walls had hardened, amyloid deposits snared.
The solution was life changing; a catheter was installed.
That improved quality of life, but it wasn’t all,
Anti diarrhoea capsules would stabilise my bowel,
No need to know where toilets were, in case a system failed!

The Leukaemia Foundation through its meetings of support,
Helped us know and understand, the info that we sought.

Though teeth had been repaired, and were working well,
Without prior warning, there was much more to tell,
Several teeth broke away; just above the gums,
The after affects of chemo, ‘tooth fairy’ did her sums!
A reaction to nurofen meant hospital care.
Problems were not over – there was some more to share,
An infected gall bladder was later diagnosed.
That necessitated surgery, a problem then disposed!

Issues still presented, at a never-ending rate,
So hard to maintain, a positive mental state!

Three years since the transplant, gave extended time,
The effects of the amyloid, continued their climb.
Just like my shadow, fatigue was ever stalking.
The mobility scooter was easier than walking.
Protein found in organs especially nerves.
Amyloidosis had impacted, quite easy to observe,
It was noticeable that capacities were shrinking,
The acceptance of that fact would dominate my thinking!

One game I played for midweek bowls, when lo and behold,
That day the team went premiers; the cup was ours to hold!

Immune system diminished; an infection took its hold,
Days spent in emergency, they diagnosed a cold.
Surgery has been scheduled for a hernia repair
It’s just another issue for which I must prepare.
Is this to be my ‘new normal’, to be accepted, defined?
Must my outlook on life be further refined?
Forever the optimist, I focussed on what ‘might be’,
Rather than dwell on issues that had befallen me.
I must be determined; maintain an intention to survive,
Minimise the challenges; continue to strive.

A colorectal surgeon was now added to the list.
Maybe there’ll be many more if this disease persists.

Challenges of pneumonia, gall bladder, influenza and such,
Could have been insurmountable, proven too much!
It would be exceedingly nice to have one year’s respite,
Without the many issues, which keep coming to light.
I do not know what lies ahead, what the future has in store,
But I’ll maintain my confidence; enjoy this day and more.
Support of family and friends, is a most compelling reason,
To experience the moment, enjoying each and every season.

Bill Edmunds
November 2015