Hugo’s Story

Getting my Spark Back

14/09/2018
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.
I’m scared. Terrified it will come back. All this time we have been fighting and now we just stop and hope. Hope that it has all been enough, that it’s all been worth it. But what if these last 3 years have only been the beginning of our journey, what if the worst is yet to come? Or I continue to be consumed by worry, the what ifs and am unable to move beyond the fear?
I’m worried the side effects he has suffered won’t improve and that he will experience life long problems from the treatment. I fear people won’t understand these worries, that they won’t get that this isn’t really the end, physically or emotionally.
I feel happy. So happy to be starting this next chapter of our lives that we have so longed for. I’m thrilled for Hugo, for all that awaits him. I can’t wait to watch as he grows and changes and slowly adjusts to life without medication and its side effects. I smile just thinking about it, about him and all the wonders that are ahead of him. I long to see all that he is capable of being, to see him embrace his new found freedom. I know he will continue to make me proud every single day of his life and that wonderful spark of his will grow ever brighter.
I’m a little lost. I am so grateful that I have been able to be there for Hugo during his treatment, but I have also thrown myself into everything blood and childhood cancer related. It has given me a positive focus that I have been both thankful for and have enjoyed, but what happens next?  Will I feel as passionately about raising awareness and funds? What about the relationships I have developed with the charities, the volunteer work and the teams I am so proud to be part of? Will it be the same? Or will I want to step away from a world that is so often full of sadness and heartbreak?
What about the blog that I have so enjoyed writing? Writing this blog has probably been one of the bravest ‘putting myself out there’ things I have ever done. I didn’t realise how much I would love it and I know I would miss it, but what do I have to write about now? I don’t know how to write anything that isn’t about Hugo and cancer, and would people want to read it anyway?
I’m excited to look forward, to make plans and get stuck into the things we haven’t been able to do, the parts of our lives that have had to go on hold. Like our house extension, holidays abroad and granting Hugo’s wish of seeing the sparkly lights in Paris. There is a whole world of possibilities out there, so many wonderful adventures for us to go on and I am ready to embrace and enjoy every single moment. To seize the day with enthusiasm and an appreciation that I didn’t have before.
I feel tired, so very tired. I have often said that this experience hasn’t dimmed Hugo’s spark, but I fear it may have dimmed mine. My confidence has been knocked in so many ways. I have blamed cancer for so much – for the mess of my house, my lack of enthusiasm, for permanently feeling like my head is somewhere else. I haven’t been the mum, wife, daughter, sister or friend I want to be. But what if that’s just how I am now, if the emotional scars have caused permanent damage? What if I can’t undue all that it has done? This experience has aged me and I feel I look tired and dull. How do I get my spark back?
I am incredibly thankful, that we have made it to this point, that Hugo is well and happy, that he is still here. We are among the lucky ones and there isn’t a day that passes that I am not acutely aware and extremely grateful for this.
I feel reflective and thoughtful. I have learnt so much about myself and others. People have been so wonderfully kind and supportive, it has made me question what I would be like if the shoe were on the other foot. It has forced me to reflect on who I am and who I want to be. An experience like this gives you a different view of the world and the people in it. We have felt such sadness and heartbreak. These have been the most difficult of days, but there have also been moments of pure joy, unexpected happiness in amongst the worry. It is impossible not to be changed by this experience in a million different ways that can’t quite be understood or articulated. I hope I am a better person because of it. I just know I am different now, but what I am going to do with that knowledge, what positive purpose it can fill, I just don’t know.
There are times I feel hopeful and brave. That we will take what we have been through, the strength we have discovered, and use it to create a positive and wonderfully normally family life. We will continue to look for the joy in the ordinary and to relish all that we have been thankful for. Hopeful that we can look forward rather than back. To find ways to celebrate as we tick off the weeks, months and years of our after treatment life, as the memory of cancer dims and fades.
Much of the time I feel overwhelmed by the enormity of the situation. Of what we have been through, at how huge this end of treatment moment is, the difference it will make to our lives. I feel tearful at the thought but I don’t know if they are happy or fearful tears, I suspect they are a mixture of both.
I am lacking direction. For so long I have put Hugo first, putting thoughts of myself to the back of my mind. That is exactly how it should be and what I needed and wanted to do. But now I am starting to think a little about me again. What does the future hold for me, what do I want? I no longer work, no longer have the focus or direction that my job gave me. I feel very fortunate, but also a little without purpose. I have always admired people who have ideas and go for it, unhindered by a fear of failure. I have never been one of those people. I have wished for the courage to take the ideas in my head and make them happen. Maybe now is the time, but I don’t know what and I don’t know how.
I know I will be ok really. That I will continue to put one foot in front of the other, just like I have been doing.  If I can get through the last 3 years, then the future should be a breeze. I know the thoughts in my head will slowly untangle and start to make sense, that the answers to all these questions will come or cease to matter. The fears and worries will ease as time goes by and we get used to this new normal, this nice new normal. It’s a good problem to have and I know I will do my best to embrace it. The only person putting the pressure on is me, and I should probably be a bit easier on myself. I should just do what I’ve always done and take it one day at a time.
For the moment I will try my best to let the happy thoughts shine through. To look to Hugo to guide me, just as he has been doing, with his boundless enthusiasm and joy. I will approach this next chapter with love in my heart and a smile on my face and let the rest take care of itself.
See you on the other side.

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4 Comments

  • Miria Tzorbatzoudis
    14/09/2018 at 5:25 pm

    Amazing words lisa 😢.. u r a very special person,all you need to do is look forward honey,its over honey,totally relate to it hun. Hugo is amazing,your strong boy has done u proud,and his gorgeous mummy has done him proud❤ I wish you all a life time of health and happiness always ❤

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    19/06/2019 at 12:50 pm

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