Each day felt like it was just rolling into the next with a noticeable gradual decline in my husbands health. Our neurosurgeon had commented that he would eventually become very confused due to the location of the tumour in his brain. The first obvious sign was the morning I laid out his clothes for him to get dressed as I had for the past few months. When I returned sometime later he was still sitting on the edge of the bed nude struggling with his shorts which he’d managed to pull over his head with one arm through the the hole meant for a leg. I realised then that things were about to get a little crazy in our house. Shocked and annoyed I somewhat aggressively tore them back over his head and asked what he was doing. “Getting dressed,” he responsed. Holding my son a little closer to my chest I reminded myself to breathe. It wasn’t his fault but why did I have to deal with this insanity? The thought of ‘this is not fair’ crossed my mind as it occasionally did. I put it to the back of my mind and dressed him carefully most annoyed at myself for being rough.
My husband was grateful for every small action I performed. He resented the burden he’d become and thanked me constantly. He was forever grateful to be alive, to have Jack and I in his life. My frustration couldn’t last long. But I was tired, exhausted really. The stress of thinking about what my future looked like in the next few months compared to what I’d envisaged weighed heavily on my mind. Caring for my newborn and feeding him every two hours kept me in a permanent sleep deprived state. I ignored the suggestions to send my husband to hospital to be ‘rehabilitated’ worried he’d never return to us. Our medical team were most concerned that I was on the point of having a nervous breakdown which realistically I should have. Friends and family occasionally suggested they could visit and stay for a few hours and look after him so I could sleep, but how could I sleep with this constant stress plaguing my thoughts. I also worried they’d realise how bad it really was. My goal to keep Jack with his father as long as possible was all that mattered; their limited time together was of the essence.
People came and went throughout the day, we were riding a wave of medical requirements to keep Russ at home. I smiled through the annoying admin requests, filled in another form, answered another trivial question just wanting them to leave as soon as possible but also realising I needed them here so I didn’t have to travel daily to hospital. The moments they spent talking and assessing my husband with their useless preschool drawing activities also provided me rare and cherished moments with my son; I would escape to my room lying on the bed with Jack on my side just looking into his beautiful angelic face crying quietly as he slept unaware. They were all kind people doing their job and trying to make my life easier, I should have been more grateful, I tried to keep this in mind. It wasn’t until later when the cancer totally consumed my husband’s mind that I would rely on them to protect my sanity. Interestingly they were all women, all mother’s and all in awe how I was managing I would later learn.
My laptop and large white lever arch file didn’t leave my kitchen table. The weeks were heavily scheduled with all the recurring appointments and the folder contained the essential documents detailing all of the procedures past, present and future. I realised I was managing the situation like a major project which in effect it was. I’d read early on in an American brain cancer online support group that when distraught it’s easier to refer back to something organised and find the information you need so this folder became a key tool in managing a disarranged journey.
I’d taken to putting Russ to bed straight after dinner appreciating the rare moments of peace in the house where I could just sit in my comfortable white leather armchair and look into the garden as the sun set. My obstetrician suggested I could drink a glass of wine when I needed one and I happily obliged with his blessing. New mother groups would have been horrified seeing me breastfeed whilst drinking a large glass of shiraz I’m sure! It didn’t make any difference to Jack and my sleep as I felt we both always slept with one eye open on high alert. My lounge chair would also serve us well for midnight feeds where I’d wander out to get a glass of water and enjoy the silence during a midnight feed. The day had been long, most days felt somewhat like a blur, as I reflected on what I’d done well and what I could have improved on. This constant self analysis was always coming to mind. Need to be more patient, just breathe was my mantra.
Gazing out of the lounge room window into the darkness I saw movement and was suddenly startled. Looking more closely I noticed a large figure waving at me frantically. It was Russ and he was stark naked with a ludicrously large smile on his face. I quickly jumped up and ran to the door with Jack still attached to my breast waking from his milk coma. “Get inside,” I yelled. Fear raced through me like a bolt of energy. I was internally hysterical feeling the heat rising to my face. He explained to me he was lost and looking for the bathroom. How the hell did he get outside? What if the neighbours saw him? Leading him by the hand slowly through the house I pointed where the toilet was helping him sit correctly so he wouldn’t fall off. Breathing deeply with a lump in my throat I had to get him back into his bed immediately. Then I could clearly assess the severity of the situation. What struck me was the smile on his face. Why was he smiling so absurdly? It was though he was overcome with a new foreign madness. This was the confusion our neurosurgeon had alluded to.
Walking him back to his room and ensuring he was comfortable in bed, pain was under control he thanked me for my help and kissed both Jack and I goodnight. I closed his door and turned the lock. It was the first time I’d locked my husband in his room.