End of Treatment Bubble

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.

But somehow everything is different. I feel lighter. I'm still exhausted, but somehow I feel energised too and excited about the future. The fog in my head that arrived when Hugo was diagnosed, at last, seems to be lifting. Things just seem a little clearer, a little brighter.

The mix of emotions is still there, but the intensity has eased. During the days and weeks leading up to the end of treatment, I felt anxious and tearful, along with the expected excitement. My adrenaline was pumping and the emotions were almost overwhelming. The hugeness of what was about to happen after so long was almost too much to comprehend. Then it happened. The big, light at the end of the tunnel moment. Bringing with it a huge wave of relief.

I have thrown myself into celebrating. There has been a dinner out, a bucks fizz breakfast (for me, not Hugo!), a hastily arranged gathering that turned into a bit of a party and a stay at Thomasland. I have been looking at trips away and days out, keen to make the most of our newfound freedom.

We are sitting in an end of treatment bubble, fully enjoying and relishing all the good, all the happy. There are moments when the fear and worry threaten to creep in. The reality of what we have been through is slowly easing its way in, trying to invade our bubble of happiness. But for the most part, these feelings are held at bay, pushed away outside the bubble. I refuse to let them in and am holding on as hard as I can to this lighter, brighter feeling of relief and joy.

I am fully aware that this bubble will one day pop, that this isn't really the end of our experience. I know it could come back, that there is every chance Hugo will be living with the effects of the harsh treatment for many years to come. But whatever the future holds, this achievement and this wonderful feeling is worth celebrating and enjoying to its full extent. We deserve this time in our little bubble. I'm so tired of feeling sad and exhausted, of living in fear. I refuse to let this cancer disrupt our lives any further than it already has.

I want us to live again, to live a life free and unburdened. To bring laughter back, laughter that makes cheeks hurt and tears fall. I want us to be all that we are capable of being, with nothing holding us back, including ourselves with the fear of what might be. We have learnt how important it is to make every day count and how lucky we are to be able to do so. I want us to get out there and seize the day.

Hugo seems to have a newfound energy. I don't know if this is because of stopping chemotherapy, or if he is just picking up on the mood, but he too seems lighter and brighter. His walking continues to improve, his confidence seems to be growing. He seems fully ready and willing to grab hold of this next chapter of his life with both hands.

I still don't think he understands the significance of finishing treatment, but it doesn't matter. He is happy and it is beautiful. I am so excited for all that is to come for him, for the new world he is slowly discovering.

Most of all I am unbelievably proud of him. His smile and strength have often hidden the true extent of the battle he fought. But I know. I know all that he endured. How cruel and brutal this experience has really been. I have watched him every step of the way, and he has been incredible, in every way possible. I want to shout from the rooftops 'he did it, he bloody did it!'. Because he did, my amazing little mad did it. Watch out world because here he comes.

When the sharpest words wanna cut me down
I'm gonna send a flood, gonna drown them out
I am brave, I am bruised
I am who I'm meant to be, this is me
Look out 'cause here I come
And I'm marching on to the beat I drum
I'm not scared to be seen
I make no apologies, this is me.

This is Me, The Greatest Showman

Getting my Spark Back

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

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

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

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?

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.

Day in the Life - Medication

I often get asked if Hugo is still on chemotherapy. Has he finished, or is he due another cycle? Treatment for blood cancers can differ from other cancer treatment plans. It is often long, in some cases life long, and I think this can be difficult to comprehend - I know it was for us when we were told his treatment would last for over 3 years. Hopefully this explains a little more about the medication, chemo and otherwise, that Hugo takes for his type of leukaemia (acute lymphoblastic leukaemia).