This is the blog post I have waited 1236 days to write. And yet it has actually been the hardest. As I type, this is my 6th, 7th, 8th attempt at finding the words. This blog has always felt so easy to write but this post has felt hard. I am only finally posting it today because we are going to celebrate with our family over the weekend, and Bilbo will finally ring the bell. I want to be able to share that celebration with you all. But without this post the story is incomplete. So tonight I’ve finally finished it.
The Last Few Weeks of Treatment
The end of treatment always felt so far away, so out of reach. All of a sudden, we were in double digits, then single digits. And then, just 5 days away from the 18th of March, it came to an abrupt end. I should have been elated. Yet I ended up feeling a bit meh!
I think the meh comes for so many reasons. Cancer has left us battered and bruised. Then we’ve had 2 years of Covid to deal with. And just as we should be celebrating getting to the finish line, it feels somewhat overshadowed by a deep sense of sadness for the current state of the world.
Reaching the finish line has also felt so confusing. Why? We are not really finished. Bilbo no longer has to take chemo, but we are far from done! Cancer isn’t over, we’re only just learning to live with the scars.
I have also been struggling with the wave of emotions. Everyone in our cancer world warned me, but knowing the wave would come made it no less overwhelming.
From my first blog post Starting a new journey… I’ve always been honest so even though this post is a celebration, it comes with a sizeable dose of reality.
End of Treatment Came Early
Instead of Friday 18th March being Bilbo’s end of treatment day, like we had always planned for. It actually came a few days early.
Bilbo had been wrestling with skin issues – again, they started a few weeks back. Warts/verruca’s started appearing on his feet. His lips showed the telltale signs of getting sore again. He was tiring easily, his legs were sore. And we’d reached the breaking point with his nausea and loss of appetite.
Nothing tasted good, not even pizza. In the last few weeks cancer wasn’t only hurting him physically, it was breaking his spirit. Our evening chats were full of raw emotion from an 8-year-old trying to process so much. The tears, the countless breakdowns about how much he hated cancer were gut wrenching, we were so close to the end, it felt like we were literally limping to the finish line.
On Friday, 11th March, with 1 week of treatment left, we discovered another infection in Bilbo’s big toe. Our oncology team suggested a course of antibiotics. By Monday, after their weekly meeting, they’d decided to stop chemo altogether.
Louise, Bilbo’s nurse called and said “stop chemo”. I was left stunned. Then I cried. I cried for every emotion that was running through me. I felt sad, I hadn’t given him his last dose of chemo. Then I was angry. Angry for not being glad he was done and thinking about something so trivial. I was relieved – it was over! I felt so incredibly overwhelmed…knowing it would never truly be over.
And that is where I’m stuck.
It will never be over…
I never thought my son would get cancer…you don’t go through life thinking about it. You live life!
But then it happens, and once you’re in the club, it is a membership for life. We can’t un-see the trauma our little boy has been through, we’ve all been through. We won’t forget all the other children we’ve met along the way. The ones we’ve rooted for, the ones whose parents I’ve swapped advice with, or stories I’ve read. And I think often about the ones who didn’t make it, the ones taken too soon.
Breaking the News
I was so excited to pick Bilbo up from school and share the news with him. As he came out of school, he looked withdrawn, and as I bent down to ask how his day was, I noticed his watery eyes. And then the tears fell. Bilbo doesn’t cry often so when he does I know it is something big. He said he was starving. He hadn’t eaten. He’d not been able to eat his breakfast and he hadn’t liked his lunch. This isn’t a boy who is fussy, this is cancer messing with his taste and smell. This is what cancer does, the poison we put in their bodies robs them of the small joys. In this case, it is just being able to eat.
In the midst of drying his tears. I broke the news that his chemo was finished. I explained he didn’t need to take any more of the nasty medicine that made him so sick and nauseous. Before I knew it, Bilbo’s teacher was there, and as I explained our news to her and to the other mums, I was surrounded by happy tears. Bilbo was also surrounded by his lovely friends, all hugging him to check he was okay.
It might never be over but we are certainly not alone.
How’s Bilbo doing?
He’s up and down. The infection in his toes have cleared up, his lips improved within days of being off treatment. We gave it a week before we took him off anti-sickness and his appetite is improving every single day. I never knew how much joy there could be in watching him devour food. I just stared at him tucking into a meze of food at the pub and then worked his way through a chocolate ice cream. It was pure joy!
His mood has lifted and we’ve noticed his energy is improving daily. He is a ray of sunshine, and as I watch him, I thank whatever forces worked to get him through the last 3.5 years.
But…we’re not done yet.
It is a milestone not an end date
We always marked 18th March 2022 as the end of treatment. I don’t know why because it isn’t. And as it has come and gone, I see it more as another milestone we’ve ticked off.
Bilbo still has to have weekend antibiotics for 3 months. He still needs to have a variety of tests to check everything is working post-chemo. He needs to be immunised with all his childhood jabs. And he is having physio to build his strength.
And for the last few weeks we’ve been working on getting rid of the 15 verrucas on his feet, working through various treatment options to try and make him less uncomfortable. Whatever we’re doing is working, it is just slow and frustrating.
What happens next?
Now that Bilbo has finished his chemo and we have no more lumbar punctures, there are no more weekly bloods. We have monthly checkups instead. These will eventually go quarterly, then annually, until we reach the 5-year marker.
For now Bilbo is still very vulnerable to infection, all of his childhood immunisations will need to be redone. This will happen later this year all being well.
And we are getting regular physio to help build his strength.
But really all we can do is wait and see. I am hyper alert about how he is feeling, I think he is sick of me asking how he is. I swing between feeling like we can relax and enjoy being normal to being hyper-sensitive that he has new bruises or panicking (like tonight) about why he’s so tired.
How Am I Doing?
And all of this helps to explain why I’ve not been doing so great. I am finally getting counselling. It has taken me almost 10 attempts to write this blog, which speaks volumes. I always said I didn’t want to open Pandora’s box whilst Bilbo was in treatment. But as Bilbo’s consultant pointed out, his treatment has finished, and I’ve run out of excuses.
I don’t know what I’m expecting the counselling to do, but I know that I need help. My feelings over the last 3 months have felt so big and overwhelming, I’ve had weeks where I’ve barely wanted to get out of bed. There have been days where the smallest thing has led to a meltdown. I’ve felt incredibly tearful and sad or I’ve felt so angry at the world.
And the worst feeling of all is when I’ve felt absolutely nothing and completely numb. I think a lot of confusion comes from the fact I thought we would be screaming from the rooftops, “It is finished,” but at one point, I could barely sort out the end-of-treatment party. I felt paralysed. And incredibly confused. The emotions don’t make much sense, so I decided now felt like the right time to start talking to someone. And I am so grateful to be able to do this.
So, instead of the 18th of March being the end, it was an important milestone. And it has been a time of reflection. I’ve been reflecting on how our life has turned out. If Bilbo hadn’t got cancer, would we have been brave enough to move to Devon? If cancer hadn’t entered our lives the way it did would I still be the same person? Cancer has given me a lot less tolerance for the small things, I have less patience for bullshit. And I have a sense of fearlessness I’ve never had before. After all, I faced my worst fear head-on and came out the other side.
Every day we have our gorgeous boy with us, it is a blessing. Every time he flashes his gorgeous smile, I appreciate the second chance we were given. Bilbo’s thirst for life is a lesson to us all, life is a gift. He is a miracle and I will never forget that.
End of Treatment Celebration
On Saturday we will finally get to celebrate with our friends and family. Bilbo will ring the bell, which will be the post we can all celebrate. I can’t wait to share the moment we’ve all been waiting for…