Day 316: Living With Cancer
A big part of our life now is just living with cancer. We’ve reached day 316 and i’m starting to flash back to last year when our life fell apart. My facebook is reminding me vividly of the lead up to the diagnosis. Little did I think that fast forwarding a year we would be a family living with cancer.
Living with Cancer
And the truth is we are living, actually better than living we’re thriving. We’re starting to feel less constrained by the diagnosis and the longevity of Bilbo’s treatment. Our wings are feeling a little less clipped.
But then we’re also very aware that whilst things have been good for the last few weeks and we’ve been checking off milestones, we’re very much still living with cancer and all the side effects and crap it throws at you.
We were able to take a trip to our happy place to celebrate my mums 60th birthday. It couldn’t have come at a better time for us, family, friends, good food, good company and lots and lots of Cornish fresh air.
The quality time with people we love felt like the perfect way to close out the summer.
He’s great, better than great he’s blossoming. His hair is growing back thick and fast, he’s got a glint in his eye and he’s enjoying every second of extra freedom maintenance is allowing him.
We’re working on getting the right dosing for his treatment and today we had a little set back as his blood count is low. We’ve been asked to stop chemo for a week and will review again next Tuesday. We’re told this is completely normal – i’m sure it is. But also a stark reminder that we’re a family living with cancer and all its ups and downs.
Living His Best Life
He was over the moon to return to school, he’d missed his friends and the routine of daily life. He skipped in without a second glance, despite my heart in mouth and continual worry about not only him settling in a new class with a new teacher. But the fear of how him still having so many complications will impact his school world this year.
He’s grown over the holidays physically, mentally and emotionally. He’s tried things he’s never done before and he’s built up his strength. At the start of the holidays his legs were struggling. The vincristine chemo had taken its toll on his muscles. But with the help of my mum he’s worked hard to build that strength back up and get those muscles working again.
And of course we closed out the summer holidays by saying goodbye to his wiggle.
Having his wiggle (Hickman Line) removed was such a monumental sign that we’ve turned a cancer corner.
As we drove to the hospital I was plagued with flashbacks to when it went in. And everything that entailed the title of my blog post back then sums it up perfectly Cancer we hate you. It was back in November, it was cold and grey winter was coming and things were looking pretty bleak.
Reliving the Memories
On Tuesday it couldn’t have been more different. Bilbo was excited and chatty, we held hands as we walked down to radiology. As we entered the theatre, I could see he was a little bit nervous. I could feel him starting to tense.
They needed him to lie on the bed which he did without resistance. And then I knew he was scared because he screwed his eyes up tight as he lay waiting. Closing his eyes tightly is his signal that he is scared. We both know this and it means I can respond accordingly.
I held his hand and whispered in his ear all the lovely things we are going to do in Ibiza…mini discos, swimming, the buckets of water, the beach…and before I could finish he was snoring.
As I walked back up to the Kamran ward, I felt light headed and anxious.
Had we made the wrong decision, once it is gone what if he needs bloods again? What if he relapses and we have to reverse it, what if he’s sick and needs IV antibiotics. Have we just made life a whole lot harder for Bilbo in the long run just so we can enjoy some short term experiences?
I KNOW WE MADE THE RIGHT DECISION
Every doctor has told us we have, but it doesn’t stop you thinking – what if we were wrong?
And just like that it was gone…
I fetched Bilbo from recovery and just like that it was gone, it was over. Bilbo was wiggle free. I am glad we were able to remove it without incident. It felt fitting for the moment to have some peace and put that chapter to bed.
Will it be plain sailing from here…probably not. We will at times have to face cannulars. Even on Tuesday when Bilbo woke up there was one in his arm and there will be one put in every time he has the lumbar punctures. It is a precaution and as long as Bilbo is happy to go to sleep with the gas they will put it in whilst he sleeps.
BUT I notice he had two stickies on his arm which means they’d tried one hand and been unsuccessful and had to use his other hand. But for now we’re pushing that to the backs of our minds. Focusing on the positives.
And whilst we said goodbye to the wiggle we’ve also said hello to tablets. One of the amazing consultants at the Kamran ward suggested we move one of his anti sickness to a tablet. We agreed since it will reduce the amount of horrible liquid Bilbo has to swallow (especially at weekends)
If Bilbo can take tablets we will be able to move to chemo tablets instead of liquid and this will have two benefits, less stress for us measuring out doses and having oral syringes everywhere. And two we’re hopeful the tablet form of 6MP will reduce Bilbo’s nausea.
He’s been taking tablets twice a day since Wednesday and he’s awesome at it. Helped by the fact we’ve told him he is magical, making them disappear just like Harry Potter…he must be a wizard afterall!
How am I doing?
I’m battling through. I’m having good and bad days. Days i’m gooey with being grateful, proud and happy that we’re where we are and Bilbo is doing so great. I’m almost europheric and it feels like i’m me and the world is full of rainbows and unicorns.
BUT then i’m still having very dark days, i’m starting to relive last year and my guilt that I still carry from how busy I was with work this time last year. Travelling back and forth to NYC and staying away in London. Wondering if I could have noticed the signs sooner.
Feeling terrified that as he starts Year 1 he’s going to be exposed to so many bugs and will I be quick enough to notice when he needs to take it easy?
As we start the process of applying for big school for Harrison I live in constant fear that this is going to happen to him.
And I fucking hate the daily battle we have over food. The merry dance we all have to tread at breakfast, lunch and dinner whilst Bilbo still feels lousy and nauseous. Having to explain and make excuses for his behaviour when he is grumpy about food or doesn’t want to eat what is served up in front of him.
It is exhausting, it wears you down and it sucks the joy out of life. And I get mad and then I feel bad because it is beyond his control and my anger and frustration should be directed at stupid cancer not my little boy just trying to figure out what doesn’t taste like crap today.
And I’m still having days where I don’t want to get out of bed. I want to hibernate away and pretend none of this happened, wake up and believe it was all a terrible nightmare and we’re back in October 2018 planning a Halloween party and thinking about our holidays.
Childhood Cancer Awareness
And maybe it is just the month…I wrote last week about Childhood Cancer Awareness Being a mother of a child with cancer makes you an advocate by default and by writing this blog i’ve opened myself up to share our experience in the hope it helps other families and friends.
But it also throws you into this world of misery, where babies, children and young adults are suffering unimaginable pain and you see it all. And as parents living it day in day out you look out for each other and battle through, you share your own story in the hope it will help another family. But it is everywhere and that is really fucking hard.
Since you’re here, hopefully you will find some of our other posts useful and will consider sharing them through Childhood Cancer Awareness Month: