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My twelfth Christmas with blood cancer

The Bloodwise logo. Bloodwise appears in black text against a white background
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27 Nov 2018

For most of her adult life, Katie’s shared Christmas with her family, friends… and blood cancer. But this year, she’s hoping things will be a little different.

Katie with her mum
Katie with her mum

Christmas is always an emotional time for me.

I was diagnosed with chronic myeloid leukaemia (CML) on 19 January 2007, and I always remember that last Christmas so vividly. The last Christmas before blood cancer…

For the last 11 years, I’ve been taking a daily drug called a tyrosine kinase inhibitor (TKI) to treat my condition. TKIs can control CML but they can’t cure it, which means I will always have cancer at Christmas; there’s no end-of-treatment date for me. My diagnosis is always there, keeping me company with everything I do.

There are several different types of TKI, which all carry their own side effects. I was recently put on a new one, which, touch wood, isn’t annihilating my energy levels. But the journey to this point hasn’t been smooth and I’ve spent the last 12 Christmases feeling exhausted.

The first one, just before I was diagnosed, was because the leukaemia had built up in my bloodstream – not that I knew that was happening at the time. I just thought I was tired after a busy university term.

Christmas since then has been hindered by exhaustion and tears. Sometimes they’re tears of happiness from having my family all together. But I can also find it all a bit much. Particularly with my ‘cancerversary’ looming just beyond the horizon. (Despite the tears and exhaustion, I celebrate the date I was diagnosed and all the good that has happened since. I can’t ignore my condition; it’s a part of me and something I have to live with).

The real meaning of Christmas fatigue

I’m also normally exhausted after the year of work and not really having holiday time (a downside of being self-employed on a limited budget!). And this isn’t helped by the fatigue that can be both a symptom of the leukaemia and a side effect of treatment. All of this means that I cry more easily (and more often!) than I used to.

I also want to be a part of all the celebrations, but I have to go to bed early to give myself enough energy to get through the next day, so I miss out on a lot, which upsets me. When I do stay up and join in, I then feel pain in my legs because I’m so exhausted, which then upsets me. And I often feel I’m not helping enough in the afternoon with the tidying up because I don’t know where I will find the energy, and that also upsets me. So, whilst I treasure this time of year, I also find it very difficult.

There’s something else that weighs on me at Christmas, too… I have always been single at Christmas as an adult and being on my own when my siblings have been with their boyfriend/girlfriend (and now husband/wife) has been difficult. And now they have children – which is magical. Christmas with babies and small people just makes it that little bit more special, but it also reminds me that it’s not what I have. Doctors strongly recommend that you don’t become pregnant while you’re taking TKIs, so that’s never been an option for me. So, Christmas surrounded by family is always slightly bittersweet. I adore us all being together, but it can be tough.

Making spirits bright

But this year I have high hopes. Since I’ve started taking this new drug, I’m finding that I can do things. I don’t need to go and lie down because I find it all a bit overwhelming and just need some quiet. I can fully join in and be 100% present. And this year there is someone special for me. Someone who doesn’t care that I have cancer. Someone who doesn’t mind the fact that I need to go to bed early and can’t function after about 5pm.

This Christmas will be emotional, yes. But this Christmas I will really be me for the first time in 12 years. And, in all honesty, I am so excited about this! I have already started thinking about the presents I’m going to buy, because this year I am me again.

I am also eternally grateful to my family for the last 11 Christmases we’ve shared with blood cancer. CML has been a slightly unwelcome guest at the table, but they have welcomed it nonetheless. Because they know it’s with me for life, and I wouldn’t be me without it.

The Bloodwise Support Line 0808 2080 888 is open Monday, Tuesday, Thursday and Friday 10am to 4pm and Wednesday 10am to 1pm over the festive period (except bank holidays). The Samaritans are open throughout the Christmas period. You can call them on 116 123.

If you’ve been affected by blood cancer, you can also join our Community Forum to connect with other people who have had similar experiences.

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