As you will know by now Elaine has gone, but the end of her story has not yet been told. I’m Elaine’s husband Mark, and as I am now the ‘last man standing’ from the Blog title, I guess it’s down to me to complete the journey with you that she began just a short time ago.
There are two reasons for my doing this:
1. Elaine herself. To leave things just hanging and unfinished was not her style. She loved writing and the interaction with her readers, and I believe telling of her struggle to stay one step ahead of cancer, intermingled with observations on life and her surroundings really did help to make sense of what fate was casting her way. I know she would want to see the final full stop in place.
She asked me on several occasions to contribute to horse husband cancer, “They’ve heard from the horse, the cancer and from me. I want them to hear something from your side, but I can’t say it for you.”
I simply never got round to it, and neither of us would have envisaged these circumstances for me to begin.
2. Myself. You would think after thirty years to practise I would be fully prepared for Elaine to die. But let me tell you that no amount of prep’ can ready you for the total and utter finality that is death. The fact is she isn’t coming home again, but it’s a fact that I just cannot at present grasp or believe in.
Elaine was simply my world, and I’m left feeling like some future space traveller, able to stand on the event horizon of a massive ‘Black Hole’ , I’m staring down into the abyss to where my life, love, hopes and dreams once existed, but there’s fuck-all left, empty, gone stolen away, and I’ve not a clue as to where to begin looking for any of it.
Maybe writing this will bring me some ideas.
Please understand that I am not the eloquent wordsmith that my wife had become. The only way I can do this is to tell it using my own words and language- I won’t praise it by calling it a style! I have help with the more technical side of this but words, expressions and emotion is 100% me. The events are true.
Elaine was quite candid and open about her illness and treatment, so I’ll carry on in the same vein. Her last post was December 10th, so we’ll pick up the reins from there; Elaine had not eaten properly for some time, nor was she drinking a great deal. She had awful acid reflux and recurring hiccups that was getting on her nerves as much as it was getting her down. Her abdomen had become very swollen and painful. There was also pain in her lower and middle back.
She had a high pain threshold so if she said something was hurting, I knew it had to be pretty bad. We assumed the bloated tummy, (“Looks like I’m full term with twins!”) was due to IBS caused by all the steroids she was on, to counter internal inflammation in turn caused by the Targeted Therapy, but this proved not to be the case.
It was one of the Macmillan nurses who first mentioned a condition called Ascites. This is a build- up of fluid in the lining of the abdomen. The cancer stimulates an over production of this fluid and as Elaine’s lymph system was badly compromised by tumour growth it could not rid her body of the excess. It simply stores the fluid where it can, hence the bloating and the pain. An ultrasound scan confirmed all of this. The fluid would have to be drained.
She had an overnight stay in hospital where they drained off 5 litres of fluid. A week later it was all back.
Always before it had been the treatments to halt the spread of cancer which had caused Elaine most of her health problems. What was happening now meant we could no longer keep our heads in the sand, it was apparent the cancer had upped the game and was cruising in overdrive around her body.
An arrangement was made for Elaine to have a semi-permanent drain fitted. She was quite pleased with the idea of this solution saying to me, “Isn’t it strange how things become appealing when the choices are so limited.”
And so the date and time was set,- and then un-set, as corona virus put staff out of action her op’ was cancelled and re-scheduled for Tuesday 22nd of December.
Lack of sleep was now the norm for both of us. Elaine would go to bed around 10pm, and then be back downstairs about an hour later. She then would try to get comfortable on the sofa or maybe sat at the kitchen table. The painkillers she had seemed to be fighting too much of a rear guard action. She was becoming desperate now as the fluid building up was causing the pain and discomfort to increase rapidly.
I came downstairs one night around 1.30 to find her sat at the kitchen table. In front of her was a small jigsaw puzzle of a plate of Brussel sprouts. Trying to get her mind focused on this was her way of distracting herself from the discomfort and reality of the situation that was now unfolding.
I sat beside her and we tried a few pieces of the puzzle together.
She spoke first, “It’s not looking good is it?”
“Sprouts never do, even in a picture”.
“I don’t mean the fucking sprouts, you know what I mean”.
“Yes I know, I just don’t want to believe all this is true. I want to wake up from this shitty dream”.
“So do I babe, so do I”.
I went back to bed around 3.30. We’d got half of the ‘sprouts’ done by then. Elaine completed the rest on her own.
By Friday 18th the pain had reached new levels as the pressure from the Ascites fluid increased . Elaine was on stronger pain medication but the results were limited so the hospital brought forward her appointment to that afternoon and she was in there by 4pm.
Not allowed to visit, I didn’t see her until I picked her up 24 hours later. When Elaine came out I was full of hope, but this was dashed when I saw her. She walked very slowly and looked so tired and weak. The drain and a small bag with a tap came with her. Nearly 4 litres of fluid had gone already.
“Don’t expect too much Mark, I’m not so good”.
Her words were flat and toneless and I helped her into the car without comment. She wanted to go home via the Christmas street lights in town, she always loved to see them.
A voice inside me was screaming, “She knows it’s the last time.” Somehow I managed to silence this liar.
Despite more painkilling relief Elaine suffered another bad night being unable to sleep for no more than about 45 minutes at a time. Sunday morning saw some relief, as an early call to Macmillan at the Hospice resulted in permission to increase the morphine dose, she even managed a couple of hours sleep.
Elaine kept herself busy for much of the day, at least as much as the fatigue allowed, even now she refused to give in to a situation which would honestly have floored most mortals. The fluid kept draining.
I wasn’t to know it then but that Sunday night would be our last ever at home together. It was an utter bastard…!”
To be continued…
I would just give my thanks for all of the lovely comments about Elaine after last week’s post. Also a big thank you for all your encouragement to me at this most difficult time”. -Mark