Acute Lymphoblastic Leukaemia – A Wife’s Perspective Part 2

Hitting rock bottom

You can read part one of this blog for Leukaemia Care here.

As seems to be the way with treatment for acute leukaemia, Martin quickly started another intense course of treatment as an in-patient, aimed at finally achieving remission. It all went well initially but then, two weeks in, Martin got a bad infection which over the following days progressed into sepsis and pneumonia. I knew that he had been deteriorating for days but I didn’t realise how bad it was until the morning when I went into hospital and found him delirious. There was a sense of urgency about him and it was hard to make sense of what he was saying but he kept repeating how sorry he was and to tell the children that he loved them. In my mind this was him saying goodbye!

He continued to deteriorate and ended up in intensive care and on a ventilator. We were told that there was only a small chance that he would pull through. I would quite happily erase my memories of those few weeks as there were so many awful moments: having to call Martin’s parents and tell them that I thought they should make the five hour journey as Martin was in a bad way; having to take our three and five year old in to see their daddy before he was put on a ventilator so that they could process it all in their minds if he didn’t pull through; coming back on to the main ward to see all of his belongings being removed because another patient needed the bed. So many awful memories that I wish I could forget but that will be forever etched in my mind.

Amongst the feelings of despair was my old friend ‘guilt’. I wanted to be in the hospital 24 hours a day, but I also knew that the children needed me then more than ever and, not only did they need me around, but they needed me to be strong. That week of my life was so surreal. I remember taking a shower and just making this weird sobbing noise. There were no tears, just this sound that didn’t seem like it could be coming from me. It was almost like I was on the outside looking in and thinking, ‘what is wrong with you woman? Sort yourself out’. I didn’t want to see anyone I knew and had to make myself do the school drop-off for my son’s sake, but I just felt that everyone was staring at me, gossiping about how my husband was on death’s door. Obviously, this was all in my head, but everything became unbearably hard whilst at the same time I was still trying to pretend to the outside world that I was coping.

The saying ‘when it rains it pours’ is the best way to describe that time as it felt like everything that could go wrong did go wrong. We woke up one morning to a blocked toilet which flooded the bathroom. Another night the dog was vomiting blood all over the rug. I remember taking her to the vet and telling the poor man that the dog couldn’t die as the children had linked the dog’s survival to their dad’s survival. Miraculously she pulled through, but to add to the chaos of life I now had to cook her up fresh chicken day and night.

When things really hit rock bottom you have to make decisions that you never thought you would need to make. I mean, yes, I had heard of people our age being diagnosed with cancer, I just never thought that it could happen to us. I had to take advice on how to talk to the children, re-phrasing the way I talked to them to say ‘if’ your daddy gets better, rather than ‘when’ he gets better. I had to quiz the consultants in intensive care about what would happen if they had to keep Martin on the ventilator for weeks and the leukaemia cells came back; what was the point to it all if he got over the infection only to be totally stuffed when he came around with no hope of achieving remission? So many conflicting thoughts, most of which were irrational and the doctors during this time were simply amazing. They took time to talk to the children, they offered kindness over and above what was required, and probably most importantly, they always respected Martin’s privacy even when he was completely oblivious to what was going on.

There was one moment which I will always remember and which I now look back on with shame. It was when Martin was in intensive care on a ventilator and when I had very little hope of him pulling through. I saw a woman in the hospital corridor who I recognised from when Martin first started treatment. That first time we saw her she was so ill and frail that I remember just feeling grateful that Martin was faring better than her. When I saw her that second time she was looking really good and I couldn’t stop the unbidden thought of ‘why Martin and not her’. These thoughts are completely selfish, but it is impossible to stop them popping into your head when you see someone you love teetering between life and death.

The other overpowering memory is the smell of the cleaning fluid on the ward. It seemed to permeate into everything, including Martin. Even writing this account has vividly brought back the smell to the point where I am not sure if I am imagining it or if that disinfectant smell really is in the room. Just the thought of it makes me want to turn around and run as far and as fast as I can. If only it was that easy to escape the reality of cancer.

You can read Part 3 of the blog here.

 

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