Life after diagnosis, living with leukaemia, treatment, hair loss, survival, support networks, motherhood and anything else that might be useful!
Since I was diagnosed with leukaemia so many people have told me that I’m ‘really brave’, and whilst I’m touched by their comments, I always dismiss them, I don’t see myself that way. But I wonder if I’m right to be dismissive.
A few weeks before diagnosis I started some online CBT, I was mentally struggling with a long term back problem. I explained how I wasn’t coping with the situation, and questioned how on earth I’d ever cope with any serious diagnosis. Little did I know how close I was to finding out.
When I was told ‘We think you’ve got leukaemia’ I certainly wasn’t brave. I think I wailed ‘Nooooo’ and I cried. From there everything happened so quickly, I had no time to think how to react. I had the choice between living and dying, having chemotherapy or not. It was a no brainer. I was scared of what the chemo might do to me, but I never questioned the need to have it. Not brave, just not willing to die.
The first few weeks of treatment I was carried along on a tidal wave of cards and gifts, visits from friends and family, some great ‘roomies’ (more on them another time) and a high dose of steroids! To start with chemo seemed a breeze, I felt OK, I was eating well, I was in hospital but still up and about every day. Everything was new, there was so much going on in a busy ward my mind was occupied, I filled my day doing the Christmas shopping online, there was still little time to think. Nothing brave about that.
But as time went on I started to tire. The thought of there being more treatment was too much. Coping with each day at a time was an almighty struggle. I had gone from being an active person to one who could do little but sleep and lie around the house. I couldn’t concentrate long enough to read, the noise of a TV was too loud. There were many times I curled up in bed, unable, or not wanting, to move. I did not feel brave enough to face this new world. One day, despite my husband and mother pleading with me, I refused to take my tablets, I just couldn’t face it any more. I’d lost my appetite and more dangerously I wasn’t drinking much either. It was all too hard, I was giving up. I ended up back in hospital.
Despite the best efforts of the wonderful staff, being in hospital was unpleasant. Medically there was no reason for me to be there at all, but being at home scared me. At home I worried that every physical feeling was a sign the leukaemia was taking hold again or I had an infection. The responsibility of remembering what tablets to take and when I should take them felt overbearing. No longer able to do anything domestic or look after the children, not even read a bedtime story, I struggled to find my place at home. While I’d been in hospital for 6 weeks the children and my husband had understandably developed new ways of doing things, a new affinity with each other. I almost felt I didn’t belong there either. I felt lost.
But days passed, treatment went on. At some point along the way I accepted that my world had shifted, that it no longer revolved around the school gate, but, for now at least, was to be borne out at the hospital. There I was surrounded by people in a similar situation. We’d smile at each other, sometimes chat, share our stories. The staff made us laugh even when we felt dreadful. Chemotherapy was the new ‘normal’, there was nothing brave about it, after all everyone in my immediate world was going through it either literally or by proxy as a carer or relative.
In many ways I think it’s the carers, the family and the friends who are the brave ones. They have to watch a loved one suffer day in day out. They see their appearance change as they lose hair and weight. Unless I looked in a mirror I couldn’t see my bald head. I didn’t have to watch myself crawl on my hands and knees because I couldn’t walk. Watching that but still smiling and saying ‘everything will be OK’ takes a huge amount of bravery. Coping with your Mum being so poorly whilst still going to school and continuing to learn and achieve takes bravery. Keeping a family fed, watered, clean, loved and active whilst holding down a full-time job and watching your wife suffer takes bravery. There aren't any drugs they can take to dull the pain or the senses.
In the whole 12 months the only time I remember feeling brave was the day I let my husband shave my hair off. It took me a while to pluck up the courage but finally I found it. Leaning over the bathroom sink I let his inexperienced hands and a brand new pair of clippers at my head. Fortunately it turned out my head is ‘a good shape’ to have a #1 so it looked OK.
Strangely it is only now that I am starting to rebuild my life that I feel the need to be brave. I’ve missed over a year of ‘life’. I don’t recognise most of the people at the school gate. I haven’t been more than 20 miles away from the hospital, my suppressed immune system leaves me nervous of catching germs in public places. I feel like I’ve forgotten how to make conversation other than on medical matters. Having un-styled short hair seems to require more bravery than having a bald head, the former might raise more questions and judgements than the latter. I’ve put on a lot of weight so my clothes don’t fit. I’ve lost my confidence in my appearance. Going out with great friends for the first time recently made me feel anxious. The prospect of a room of people who don’t know my story is seriously nerve-wracking. So now I need to be brave. having been given the chance to live again I must take it, I must be brave, face the new unseen challenge and one day life will return to being ‘normal’.
Thank you for sharing such an amazing story.
I have only been on this site a week and have already read many insightful accounts like yours in which I can relate to (at some level).
Many of the emotions & experiences you have described are very touching & intense.
Glad to see after all you’ve been through you’ve reflected well on your life choices you have chosen a positive mindset.. that is to use this second chance.
Stay strong & blessed.
Doing whatever it takes to stay alive because you are a Mum isn’t brave - it’s not an option if we have that chance as not everyone does.
But you are right it takes more guts to face the real world that you seem to be living outside of for a while and where you somehow no longer belong.
But somehow you get there I’m sure.
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