Acute Lymphoblastic Leukaemia – A Wife’s Perspective Part 5

Life after treatment

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

Read part two here.

Read part three here.

Read part four here.

Life after cancer treatment also had its challenges. We were emotionally distant from each other because we had both been so focussed on our own paths. We had to work hard to lessen the gap, both on a personal level and as a couple. We have both tried to block the horrendous year of treatment out of our minds; I just can’t bear to go back there, watching the man I love in pain, fighting with everything he had to survive.

There is also the taboo subject of the impact it had on our sexual relationship – the part of cancer treatment that no one seems to talk about openly, but which has such a big effect on couples. I am sure it is no surprise to anyone reading this that throughout the intensive treatment this part of our relationship was pretty much non-existent. Martin felt awful most of the time and I was utterly exhausted. The emotions we both felt were complex. Martin had lost his confidence due to the changes in his appearance. He was either puffed up around his face from the steroids or suffering from weight loss. Add to that the loss of all of his body hair, including eyebrows at one point, and who wouldn’t question whether they were still desirable. Obviously, this wasn’t what I was thinking at all and to me he was a hero for getting through each day, but I didn’t want to pressure him and I thought that he felt too ill most of the time. This led to a situation where over the course of the year we were closer than we had ever been after all that we had been through, but we barely touched each other anymore. Not even to hold hands or hug each other. This just added to the feelings of loneliness for both of us, but luckily it is something that we have been able to talk about and that we continue to work through. I feel confident that we will get back to how things were, but it is certainly another thing that we are both having to fight for.

For a long time, neither of us could think of anything positive that had come out of the cancer diagnosis. However, now that life is returning to ‘normal’, I feel differently. There are many small positives that have come from the leukaemia diagnosis. Don’t get me wrong, if I had the chance I would still want the path without cancer in it, but there definitely have been some positive changes to our lives.

We now have a strong network of friends and family; bonds have been tested as well as strengthened. When death stares you in the face, you learn to live life in the moment. Don’t get me wrong, I still wake up grumpy and Martin and I still argue but we both try and take more joy out of living. You become so aware of how amazing life is.

I had the strangest moment recently when I bought Martin’s birthday card – it was all last minute as usual and I was just trying to grab a card from the selection when this overpowering thought hit me: ‘He’s alive!’. It was the most joyous moment standing in the middle of the supermarket; my husband who I thought I would have to say goodbye to and live without was still here, still breathing and very much a part of our lives. It just seemed amazing to me. It didn’t mean that I didn’t swear profusely trying to make the ridiculous soldier cake he had demanded or get grumpy when I had to wake up early and put the balloons up, but that feeling of amazement has stuck with me.

We also both have a renewed sense of adventure and of wanting to be in charge of our lives rather than unconsciously drifting through it. Martin is getting into woodwork and I have started a blog on reducing chemicals in the home with a completely unrealistic dream that I can make a career out of keeping my family healthy.

As a backdrop to all of this is the absolute understanding that at any time Martin could be re-diagnosed with leukaemia, and that if that were to happen, his chances of surviving are slim. This brings with it a crushing fear of what life would be like without him, as I now know exactly what Martin brings to our family unit after having him apart from us for such big blocks of 2017. Luckily these moments are infrequent and hopefully soon they will be just a distant memory. I am always aware that if I share these fears with friends or family they think that I am being overly dramatic, or they don’t want to talk about such things, but this is our truth, and this is what drives us to live in the moment. Neither of us want to have just been sitting around waiting for it to come back, I want us to have been out there busy living life.

Is our life different following the cancer diagnosis? Of course, but some of the ‘different’ is positive. We have had time to re-evaluate what we are doing and prioritise what is important. One thing that changes when you have had death snapping at your heels is that you don’t wait around for life to happen anymore, you go out and grasp it. This doesn’t mean that you have to quit your job, sell your house and go travelling to some remote land. For us, it has simply meant that we plan fun days out, take advantage of opportunities, re-start our hobbies. In some ways, that is the true blessing of this illness. You remember to live again!

2 thoughts on “Acute Lymphoblastic Leukaemia – A Wife’s Perspective Part 5”

  1. Your story has really struck a chord.
    I was diagnosed with acute Lymphoblastic Leukaemia in July 2016 and subsequently needed 3 rounds of Chemo, total body irradiation and a stem cell transplant.
    I worried more about my kids and wife than I did for myself throughout. I still feel guilty for putting them through this, albeit unintentionally.
    Is great to read how it affects the other side and also to know that it appears most people go through the same trials.
    Brilliantly written 👍🏻

    1. Hi Jamie, it is amazing to hear from someone else with the same condition who found the post useful. I wanted to reply more fully so I sent you an email. I hope that is ok. Lisa

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