Days Go By, Life Gets Brighter. Pt 1

It’s been a long May. Some of it indelible, other parts forgettable (over time). The worst, thankfully, already lost into the abyss of a strange, chemo-induced amnesia. But for the most part – a few stubborn side effects notwithstanding – the worst is definitely behind us.

I have to admit that I am a little ashamed at how quickly the spirit and determination behind Day Minus 1 was silenced. Not destroyed, just silenced. In all the verbal and written small print we had to absorb before the Transplant procedure, the single consistent message was, ironically, one of unpredictable inconsistency.

A sprawling menu of possible side effects all suffixed with the reminder that no-one’s experience on this ride is the same. Hope big, be strong and it will get better over time. In other words: “Hold tight, for we know not what cometh your way”.

It’s been nearly a month since my last post. After Day Minus 1, my ride took off faster than my calm could cope with. I scrambled desperately for thoughts, and the energy to write them down, but all I really wanted to do was find my Breath, and grip tightly to my Will. One thing I’ve learned throughout this; with those two intact, nothing is insurmountable.

For various reasons I don’t have the ability, nor do I wish to offer a blow-by-blow account of what the last few weeks entailed. Not only would it make unnecessarily uncomfortable reading for anyone about to embark on the same procedure. I simply can’t remember enough, in enough detail, to make it an honest read. And this is no place for Gonzo.

That said, and to exercise a little catharsis from my side, the following highlights do their best to summarise this part of story.  Here’s what went down…

Wednesday, 30th April. Rebirth: As my Stem Cells were finally released back to me, the nurses sang an ironic rendition of Happy Second Birthday. Already suffering from the early onset of indiscriminate nausea (which was to become my biggest foe) and knee-capping fatigue, I failed to either understand or join in with the celebration. On reflection, this was a momentous day. A pivotal point in the struggle for inner-me supremacy. Perhaps I should have brought something to the party? But let’s hope there’ll be plenty of time for celebration.

2014-05-24 12.42.24

Saturday, 3rd May. Hospitalized: Losing my resistance to the side-effects of chemotherapy and being admitted to the ‘Tower’, was a deeply disturbing day. I wasn’t just leaving the comfort and serenity of The Cotton Rooms, I was leaving the indescribably important care and embrace of Emma.  For the first time in this whole journey I began to feel scared. Despite the Tower representing 24 hr world-class Heamatology care and attention, the move itself represented my own personal shift into the part of the journey at which I faced the highest risks. My body was now completely defenseless. Cue inner-strength, belief and determination. Cue Agent of Calm.

In the tower figthing myeloma

Until Discharge on Thursday, 15th May. Incoming, outgoing and rare moments of clarity:  I think I was in room 302 (but don’t quote me) on the 16th floor of UCLH. With views out over South East London that some people would pay good money to witness. Shamefully I barely noticed.

view from hospital fighting myeloma

From the moment I laid down in 302, my mind and body retreated quickly to My Room. An extremely private  inner-space I must have created as a child. Maybe we all did. A place of refuge. As quiet as snow. Padded with the light of everyone I love, and the perfect environment to adopt the small ball posture, breath deeply and surrender to whatever was to come through those doors.

The days and nights were long and lonely. Most of the time set against a strange hallucinogenic haze that left most of my visitors slightly baffled as to what I was going on about.  Visitors themselves that seemed to come and go without entering or leaving. It was all very Irvine Welsh for a while.

Nurses, Doctors and Consultants came in and went out like apparitions. Fading in and out of one another like red-eye dreams at 35,000ft. Conversations reverb’d softly around the room, whilst anything they did to me was done under those small ball conditions of complete surrender. Just bring me home. Bring me home.

Clarity, when it came, came in two forms; at the zenith of fear, and at the zenith of love. But more of that in Part 2.

For now, all is well. At Home recovering quickly, but with one half of me already back with my angels in a new life that can’t come quickly enough.

new life fighting myeloma

Peace and Calm


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