Finding the Balance

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I started to write this blog post a few weeks ago. I was full of excitement and enthusiasm for the start of the new year. We'd been waiting a long time for this, for our first cancer free calendar year since 2014.

Celebrating the New Year
I wrote with positivity on how the start of this year felt like a breath of fresh air. How the year and our future was full of possibilities, of freedom and discovery. A year of finding ourselves, both as a family and as individuals. A time of figuring out who we are now and what we want without cancer hanging over us. It would be about picking ourselves up and marching forward into our nice new normal.

As I read back on my draft I can feel the strength and happiness I felt when I wrote it. It's infectious and makes me smile. I felt good, so good.

Then a few days later I received some sad news, more than one lot of sad news actually. Heartbreaking news from others who walk the same path as us. Feelings of unfairness, anger, guilt, worry and most of all incredible sadness overwhelmed me. It served as a sharp reminder of how fragile and deeply tragic childhood cancer can be. How random and unpredictable it is. That it can throw up cruel situations for which there are just no words. It broke me a little.

We have been, and will forever remain, part of a world so often full of sadness and heartbreak. We can't, and nor would we want to, ignore or fail to be moved by stories of those less fortunate, or not be aware that it could still so easily be us. But it is also a world full of strength, courage and inspiration. We have learnt so much and despite everything there are positives to be taken from our darkest days.

Maybe we need to weed out these positives, carry them forward and try to leave the rest behind. Perhaps this year is about learning to navigate the new highs, while accepting that there will still be lows. I need to hang on to the enthusiasm I felt, the happiness that is still there under the surface.

So this year might not be about marching forward with the force of a tornado, full of boundless energy, trying to create something brand new. More about finding a balance between the old and the new.

In the months since Hugo has finished treatment, we have all felt lighter. The weight of the fear and worry has slowly lifted and I have faith that it will continue to do so. That the black cloud of cancer will not darken the days of our future as it has our past. I refuse to let it. We deserve those lighter, happier days and we owe it to those less fortunate than us to live them as fully as possible.

Like the physical effects on Hugo, this is a process of recovery. Of not expecting too much of ourselves too soon. Continuing to take it one day at a time, to learn and to grow. To feel thankful for where we now find ourselves, while still acknowledging where we have been. We can allow this experience to shape us, but never to define us.

I intended this post to be a positive one and despite the sadness within in it, I hope it still is.

We are once again heading into the unknown, but this time in a good way. 2019, I think we are ready for you.

End of Treatment Bubble

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It has now been three weeks since Hugo took his last dose of chemotherapy. So what does life on the other side look like?

In many ways it doesn't look very different to life on treatment. There has been medication every day, (although not the yucky chemotherapy or steroid type), the nurse has been twice and the physio has visited Hugo at school. We have all had colds and the worry that Hugo's will develop into something more serious has been there, just like it has been for over 3 years.

Getting my Spark Back

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In just a few days Hugo will finish his treatment. A thousand thoughts and feelings have been racing around in my head over the last few weeks. Many of them positive, but some feel negative and selfish. It's difficult to make sense of them all, hard to put them into any kind of order. It feels a little overwhelming, this strange mix of emotions. I am excited, I am so very excited, but I am so many other things too.

The Big Questions

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After three years of treatment, I suspect many people are a bit lost with Hugo's illness and treatment. Here are some of the questions I have been asked and a few others that I thought people might want answers to. 

Leaving Normality

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A couple of months ago, on the way back from a hospital appointment, Hugo asked me what it felt like when I had my bumpy taken out. Bumpy is our name for Hugo's port-a-cath/central line. The little device that sits just under the skin to the side of his chest. It will be removed a few weeks after treatment finishes. I explained that I'd never had one and we chatted for a while about why he does. He seemed content with this, but a couple of days later he asked big brother Henry what it felt like when his bumpy came out. It made me wonder how much Hugo understands of his illness and what 'end of treatment' actually means to him.

Day in the Life - Side Effects

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During the early phases of treatment Hugo suffered with many of the side effects synonymous with cancer. His hair fell out, he was sick, tired and pale. He lost weight, his light dimmed and he looked ill. Now, in this final maintenance phase, the side effects are often less obvious, but very much still there.

What happens next?

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During our last appointment at GOSH, our oncology nurse specialist answered the all important question - 'what happens when treatment ends?' I've asked many questions relating to this along the way. Always hesitantly, not wanting to look too far ahead, not wanting to assume we will make it that far. One day at a time, that was always the way to deal with this, but sometimes the practical side of me would come out and I needed to know, I needed a glimpse into the next stage of our lives. Now we are here, now it was time to get the full story.