Notes from early on

I have decided to start journaling.  You'll often see journaling on lists that recommend ways to nurture self-care, deal with trauma and stress, and I've had my fair share of psychologists and friends alike suggest it over the years.   But really, who has time for journaling these days?  Who has the fine motor patience to sit down with pen and paper?  Anyway, here I am.  My husband certainly expressed his wish to somehow keep his message going, which I and a few of his close friends will continue to discuss when the time is right.  But my own musings need an outlet. The Publish button also keeps me accountable to continue a habit that I'm hoping will help me (and possibly others) process the multitude of thoughts and feelings going on at any and all moments in time, having lost the love of my life a month ago today.  We lost him a month ago today, but the truth is, it was a long, painful, horrific, dreadful, slow goodbye over the last few months and even years, as his disease infiltrated into every aspect of our lives, and eventually, every inch of his body.

Today, 20 October. It's been a month.  It's felt like a thousand years.  The details of that day are so very vague, but I also replay them constantly in my mind.  Did he pass in the best way possible?  Could I have done anything differently or better?  How are his boys feeling?  One month down, a lifetime to go.

Our day commenced at about 4am when he woke and needed his limbs shifted and rubbed - he had no ability to move his body any longer, and would often cramp up, and he'd experience constant extreme discomfort.  My days were spent massaging, shifting and moving his limbs around in a vain attempt to find him some relief.  We went through a tube of Deep Heat each day... The fact he had hard lumps of all shapes and sizes covering his bony body also didn't help either.  His left side was paralysed, the paralysis had slowly crept in over the previous 2 months, and we'd discovered it was due to a brain tumour that had grown incredibly quickly to the size of a cricket ball.  His left hand was for all intents and purposes it was 'useless'.  Weeks earlier, when Clive was still attempting to walk on his own at home, he'd drag his leg along while holding himself onto the walls on either side of him.  After a few falls, the final one being quite heavy, and due to his left side giving way, I had to call the ambulance, which led to his extended and final stay in hospital.

My husband had been prescribed a low dose of sedatives the day prior - I will not go into why at this point - but it had certainly made him far more sleepy than he had ever been.  Previously, he'd be fully awake by 8am, fully awake all day, and finally be ready to sleep (with the help of strong pain management and sedatives) by midnight.  While he was used to very little sleep, it wasn't until his final days when the doctors had advised me they'd been keeping him alert with high doses of steroids, to ensure he and his father could have some quality time together, once he arrived from abroad.  Back to our final day, 4am, in the low light of his hospital room.  He looked up me while we were waiting for the nurse and said, 'I want you to know how much I appreciate everything you've done for me'.

'It's been an honour'.  I said.

Maybe I should have said more.  Maybe I should have vocalised my appreciation back - for all the incredible moments he had given me.  I didn't know this would be the last conversation we'd ever have. They were certainly the last words he ever spoke.

Later that morning, my husband was still very under the influence of sedatives, and he never fully woke.  I talked to him and let him know who was in the room, I let him know he was about to have a bed bath with the nurses and he gave a slight nod.  He could still hear me.

My husband's best mate had flown in from another city late the evening prior, then came in for an hour or so and sat with him.   I am not sure what thoughts were going through his mate's head as he entered the room and laid eyes on my husband for the first time in many months.  I will ask him one day.  I can only imagine the shock of seeing his best mate in person, and the immense physical deterioration that was so painfully apparent.

As fate would have it, my husband's boys sent me a message that morning saying they had managed to get an hour over lunch to visit him.  At this point, my husband's eldest son was somewhat at the behest of his own health journey obligations being an in-patient at the hospital across town.  I was so relieved they were able to visit, knowing their Dad's prognosis was 2-3 days at best.

They arrived at about 11.45am, and I sat them down to let them know that their Dad's passing was imminent.  It was the day before his birthday - by this point we were all probably thinking that he would pass on his birthday - perhaps his final act of poetry and perfection, a precise 55 years.

I gave the boys some time alone with their Dad and then again some more time alone with his father and the boys.  At around 12.30pm, I started to feel a strong urge to go back into the room.  It was so hard to leave that room for a few minutes, let alone longer.  I knew his time was close, and I knew also that it's common for people to pass away when no-one else is in the room.  I thought he would possibly try and do that, but I was sure as hell not going to let him go alone after having been constantly by his side for the previous few months.

The boys and Jack were talking away, it was lovely to hear their banter, but I could also sense a change in his breathing.  I could sense that he knew we were all in the room, and that he wanted silence.  I didn't know how to tell Jack and the boys this - what if I was wrong?  What if I was just imagining it?  Not something I wanted to panic them about.

Something was different, that much I knew.  I asked Jack to get a nurse.  It was taking a while.  I had written Clive a poem that I had wanted to read him on his birthday.  I knew it was time, so with shaking hands I retrieved it from the Notes on my phone.  I started to read out the poem, when the nurse came in "Can I help you??".... Gah.... I told Clive to wait a few moments.... apologies my love but I'll have to start the poem again very soon - please hold on Clive... "Yes nurse, I want to speak to the doctor about Clive, is he around?".

Thankfully the doctor was nearby and I was able to step out of the room and describe to him the change in breathing I had observed.  The doctor refused to go in and check on Clive (more on this another time) as he didn't think there was a need - but he also swore to me he didn't think Clive was going to pass away any time soon.  He described in more detail how breathing can change in the final stages of life, but it doesn't necessarily mean an imminent death. He described to me the death rattle (which I had already experienced with my dad's passing), and other physiological signs, but during this entire exchange, I felt an urgent need to get back to Clive's side.  I finally excused myself and ran back to the room.

As soon as I sat back down next to Clive, I knew.  I quietly walked over to Jack, Henry and Zac and asked them to gather around Clive's bedside.  "Clive, we are all here. We all love you so very much.  I'm now going to read you this poem, I hope you can hear me"....

Somehow I was able to read the poem out loud to Clive.  The poem is published in the Vale to Clive post on the homepage of this site.  His breathing became more shallow as I read out each line.  His breathing ever so peacefully and gently faded to a stop, soon after I had finished reading.  It was so peaceful and gentle, we all sat there for 5 minutes, wondering if he was going to start breathing again...

Jack finally suggested we call a nurse in, who checked Clive's pulse.  She needed a second person to confirm, and that took another 5 minutes.  It was during this time that Jack said some final words of love and appreciation to Clive.

Clive was finally pronounced at 1.05pm, although his actual passing was at 12.55pm.

I still can't believe it.  It still can't be possible.  Despite thinking how impossible it was for his body to be still holding on for so long prior.  How can a person, the epitome of life itself, no longer be living?  A question I don't know will ever be answered or understood.

I will always wonder if Clive chose to leave at that point, or if his body finally gave in.  Did he hear the voices of his father, his sons and myself and let himself go? Did he hear my poem?  What were the last sounds he heard and feelings he felt?  Did he feel scared, or finally at peace?  Those weeks and months prior to his death were torture. On so many levels.  But they were spent with him.  Equally precious and painful.

I have so much more I need to say.  But I suppose that's where habit needs to come in.  And time, and commitment. To keep telling the story.  For myself, and perhaps for others, one day.

It's been a month.  It's felt like 1000 years.  I don't know how I can keep living life without you in it, but I know that's what you'd want, for me, your boys, my children, your family and all the many friends who loved you too.