Showing posts with label childhood leukaemia. Show all posts
Showing posts with label childhood leukaemia. Show all posts
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.
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.
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).
Day in the Life - Bloods
Once a week a community nurse comes to our house to take some blood from Hugo via his bumpy. This blood is then sent to the lab and later that day, or the following day, we get a phone call with the results, which I write in our blue folder.
Broken Pieces
A couple of weeks ago I found myself at our local hospital. Not a particularly unusual occurrence given Hugo's situation. However this time I wasn't there for Hugo, I was there for me. I'd been to the doctors that morning having felt ill for nearly a week. He was concerned by some of my symptoms and sent me to A&E. A blood test, some prodding and poking and 6 hours later I was released with nothing obvious wrong. I remained ill for about 10 days with a variety of symptoms, but am now, almost, back to full health.
My Other Child
A few months ago I posted a photo of Henry on Facebook. We were on a day out, just me and him. A treat day to spoil him a little, because it's tough when you're the sibling of a child with cancer.
The Long Version
Over the last few weeks we have had a couple of little blips. Small bumps along the road of our new normal.
We have these every so often. I don't tend to write about them, because everything turns out to be ok. There's nothing to worry about and it just doesn't seem newsworthy in the bigger picture, once the moment has passed. But I should. Because these bumps are so much a part of our cancer journey. They are the reason why our life is so far from normal, they are the story behind the chemotherapy and the more familiar aspects of a cancer experience.
Bring it on 2018!
So, we have reached 2018, the year Hugo will finish treatment. It feels significant. The countdown can well and truly begin.
I remember, just after Hugo was diagnosed, reading that treatment for his type of leukaemia would last just over 3 years. I thought it must be a mistake, a bizarre typo. How could life continue with any semblance of normality for that period of time. How could anyone manage 3 years of chemotherapy, let alone a child, my child.
Things I Have Learnt
It has now been 2 years since Hugo was diagnosed with acute lymphoblastic leukaemia. 24 months of our strange, new, cancer filled life. The learning curve has been steep and I'm pretty sure it's not done yet. Here are a few of the things I have learnt.
Today I cried
Today I cried. Not a huge great sob fest, just a little tear, catching me unaware. I cry fairly easily. Sad books or films on the TV, even adverts have been known to set me off. However I don't often cry because of Hugo's illness. I think the fight in me stops me, it just feels pointless, a waste of my time and of no use to Hugo. But today I did, just a little.
Bumps in the Road
We are plodding along.
What seemed so strange and scary at the beginning has somehow become normal. There is a new standard to measure by and everything is fine, by this new standard, good even. Until it isn't. Until there is a bump in the road.
Screw you Cancer
A Constant Supply of Gingerbread Men
Flying High
Subscribe to:
Posts (Atom)
