This is definitely an adventure that I would rather not be on but, as it’s happening whether I like it or now, it’s probably worth recording in the hope that one day, I may make sense of it.
I’ve written a lot over the years and, for the last 23 or so, the focus has been on me – my ailments, my adventures, my challenges, my successes. Right now, my focus isn’t on me anymore. I’m dealing with something that’s much much scarier as it involves the illness of the person that I love the most. My husband of 40 years has just been diagnosed with cancer and not just any cancer. No, he’s been diagnosed with an aggressive strain of Acute Myeloid Leukemia.
It would be easy to say that the story began on Christmas Eve as that’s when the first manifestations were apparent. In retrospect, it’s possible that the story began weeks or even months before that, but Christmas Eve was the point that we were aware that there was a problem.
Let’s be perfectly frank here – Hugh isn’t a particularly healthy person. This isn’t going to be one of those stories about a young, virile, sporty person, who watches his diet and is responsible about his health. No, it’s the story of a 69 year old who has very little self-control when it comes to eating and drinking and really doesn’t like exercise of any kind. His idea of weight loss involves looking for the easiest possible option – including asking a plastic surgeon whether he could have surgery to have the fat removed from his stomach. To explain, that was inspired by my breast reconstruction surgery some 17 years ago, when my belly fat was used to reconstruct the breast that I lost to cancer 6 years earlier. I lost 3 kg in the process and Hugh thought this was brilliant and wanted to take it further.
But I digress…Hugh’s been complaining for some time about having no energy, but there always seemed to be a good reason – his work, his lack of fitness, his age. Hugh never takes health seriously and would not go to the doctor unless he was forced to and, if he went, he wouldn’t follow the instructions that he was given.
The Christmas holidays seemed to start well. We had a few days off before Christmas and had done some jobs in preparation for the holidays at a gentle pace which allowed plenty of relaxing time for both of us and very little pressure and we were feeling pretty good about things.
Christmas Eve started in our normal way with an early trip to the fishmonger to pick up supplies for the festive feasts. We also picked up the fixings for breakfast and lunch and were back in the house enjoying our croissants and coffee by just after 9. Lunch was sushi and then Hugh stretched out on the bed for a read as all the jobs were done and it was time to relax.
And then, things started to change. Keri (my best friend who will be a constant through this tale) came down mid afternoon and we chatted and had tea and shortbread. Hugh stayed out of the way which isn’t unusual as he finds our chatter annoying. What was unusual is that he didn’t want anything much to eat and, what was even stranger, he didn’t fancy anything to drink. Now, I’m not saying he’s a drunk, but he does like a drop and the house was bulging with a selection that could float a battleship.
I actually put it down to the shock of having someone in the house – Keri was our first visitor in 12 months and I wondered if it was psychosomatic but decided to wait and see. Christmas day started okay – breakfast was eaten and presents were exchanged but he went back to lie down afterwards and showed absolutely no interest in any food – not even the most delicious tiger prawns!!! Instead of the planned mussels for Christmas dinner, it was a light supper of scrambled eggs and gravlax – nothing to drink – and then he went back to bed.
We thought things would pick up on Boxing Day as his best mate always spends the afternoon and evening with us and it’s a bit of a party for four. Hugh got up and watched some cricket and sailing and had prawn sandwiches for lunch – tick! Once Gene got here, however, I really got the sense that Hugh was trying to be sociable and as ‘normal’ as possible. Nobody seemed to be interested in food, and we ended up eating Christmas pudding for supper. Hugh managed to have a few glasses of wine, but this was a change from the normal when we’d knock off bottles of it over 6 hours or so. He was in bed by 10.30 and didn’t have the energy to get up the next morning, even to say goodbye to Gene.
Things gradually got worse and he barely ate or emerged from the bedroom. I checked things like his temperature (which was normal), his heart rate and blood pressure (ditto) and couldn’t understand what the issue was.
Finally, I persuaded him to go to his GP on New Year’s Eve – first available. She arranged an ECG which showed him to be in Atrial Fibrillation and gave him a letter for ED for further review. I didn’t think it was his heart because there wasn’t the usual tell-tale signs, but I just wanted him to get it sorted.
Hugh refused to go to ED that day and finally went on New Year’s Day. We went to the ED at the private hospital where our cardiologists are located as it made sense. They had a good look at him and didn’t think it was his heart either but wondered whether his diverticulitis was playing up. They also took some blood tests and were admitting him for observation and further tests.
After a couple of hours, I came home because it was likely to take a while. Well, it didn’t take long. About 40 minutes after I left, the attending doctor called me asking me to come back because the results showed things were worse than they thought. I said to her ‘it’s cancer, isn’t it?’ and received the answer that I didn’t want to hear and was back at the hospital as fast as the Uber could take me.
I’d assumed that it was bowel or possibly stomach cancer because of his tummy pain and I felt like I’d been punched in the guts myself when he told me that it was leukemia – and some initials that he didn’t understand. I had a chat to the attending, and she said that it was AML (Acute Myeloid Leukemia) – shit!! They weren’t mucking around – an ambulance was on its way to move him to the Alfred Hospital in Melbourne where he’d get the best possible treatment and the haematologist had just arranged the first treatment. I can’t fault the treatment. We arrived at the hospital about 2.30, had a diagnosis by 5.30 and he was in an ambulance on the way to the city by 7pm. It was quite a whirlwind!!
I have to say that things don’t look good, and I suspect that Hugh knows that as well. First instruction was to get our lawyer friend to draw up Powers of Attorney and a new will for him. I’d like to think it’s a ‘just in case’ but my Celtic soul says otherwise.
Right now, I feel absolutely useless. Hugh keeps telling me to relax – hmm, that ship has well and truly saved. I’ve run around and packed up the Christmas decorations, done the washing, changed the bed and done some general sorting out. I’m going to camp at Keri’s – near the city – for the duration so that I can be close.
I think I’ve let everyone know who needs to know – work was first and some supportive friends – and now I sit here wondering whether my life is ever going to be the same again.