Acute Lymphoblastic Leukaemia – a wife’s perspective – On the up

For Carers Week, Lisa Goodall shares her experience of caring for her husband following his diagnosis of ALL. In this third blog, Lisa talks about how she helped Martin cope with isolation.

On the up

Read part one here: Diagnosis

Part two: Hitting rock bottom

Somehow, against the odds, Martin pulled through. He had no memory from when the infection really started to take hold, or of being moved up to the intensive care ward. In some ways this was a blessing, but it was also very confusing. Doctors and nurses would pop in and say how pleased they were to see him, and he wouldn’t have a clue who they were. I would then have to explain what part they had in saving his life. Martin’s muscles had deteriorated from the two weeks of being bed bound, which meant rebuilding his strength, and he was also still fighting fevers which meant hourly observations and little chance to recuperate.

It was at this time when being away from home really started to take its toll. I watched as Martin’s mental state rapidly deteriorated due to the exhaustion he was feeling. Every day became a battle for me and his mum; battling for him to see a psychologist; battling for him to be allowed a shower; battling for the hourly observations to be moved to four-hourly so that Martin could get the sleep he so desperately needed. It was also the time when our paths started to diverge. For the first time, we couldn’t really understand what each other was going through. Martin was trying to get to grips with the fact that he had almost died and was struggling to regain his physical strength. I, on the other hand, desperately needed to talk to someone about the horror of the previous two weeks but Martin was the one I usually turned to and he had absolutely no recollection of it and had his own demons to face.

It became increasingly apparent that leukaemia was no longer a challenge which we could bludgeon our way through together. Martin needed professional support and we finally achieved success with getting him referred to a clinical psychologist. She helped Martin cope by acknowledging the root cause of the problem; he had lost all of his privacy and control over his life and was desperate to be back at home. She provided some simple steps to try and make his environment more positive, such as bringing personal items into the hospital to make his room homelier.

Obviously, I went into overdrive and brought in loads of offerings from me and the children, all appropriately covered in the mandatory glitter and then affixed to the hospital room wall. Up until that time Martin had approached the isolation wards with a ‘try and escape as much as possible’ attitude and purposely didn’t make the hospital room too personalised as it was only temporary. This worked fine in the beginning because he was lucky and only had short spells in the hospital, but it left him totally unprepared for weeks of being trapped in a room.

Dealing with isolation is such a personal thing and people cope with it very differently. I have no doubt that if it had been me in that room, I would have become totally introverted, spending a lot of time in my pyjamas and watching day time telly. However, for Martin, this would have been a sign that he had given up. When he was able, he got dressed every morning by ten and tried to fill his day so that he retained a sense of self and normality. Although I admired this approach, it also brought with it some significant challenges; just how do you fill your days when you are trapped in a room and are far from being on top form both mentally and physically?

One of the nurses really helped Martin with this, going over and above what her job required. She came into the room one day with a list of ideas that her and her husband had come up with the previous evening when they had talked about how they would keep themselves occupied if they were trapped in a room. The list contained all sorts of things from listening to Ted Talks, learning a language, sorting through photos and getting into modelling. She even went as far as bringing in a model aeroplane for Martin to get him started.

This led to a massive switch in thinking and the beginning of an upward trajectory in terms of Martin’s mental health. He finally opened up and contacted close friends and family asking that same question – what would you do with your time if you were trapped in a room? Not only did this provide lots of different and interesting ideas, but it also allowed friends and family to contribute to Martin’s recovery and feel involved.

Martin gradually regained his strength and overcame the infection, but things remained incredibly challenging. There were times that I felt I had lost Martin – yes, he was still there with me and yes, I would have chosen that every day to the alternative, but he was so impacted by the treatment that he was a ghost of his former self. I couldn’t tell when he was making a joke anymore and I was getting offended by the things he would say to me. None of this was his fault. He had been heavily sedated for five days whilst on a ventilator. His muscles had wasted away during the two weeks when he was bedridden to the point where he could no longer walk unaided or even get himself up from the chair and back on to the bed. Everything about life had become a battle both physically and mentally. At that time, we didn’t even know if the third round of intensive chemo had even worked, with remission still feeling like a distant dream. But amongst all of this I was selfishly worrying about whether the husband I knew, who I laughed with and had fun with, was gone forever. It is hard to talk about these things when I should have just been plain grateful that he was still alive, but the worries were definitely there.

You can read Lisa’s other blogs on her website at:

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