Day 393: Thankful
Over the last few weeks i’ve been thinking a lot about how thankful we are. We can’t help but reflect on the last year and look back. Reading the posts we wrote during those early days of Bilbo’s diagnosis. It has stirred up a lot of memories, both good and bad.
And a lot of our friends and support network will be celebrating Thanksgiving this week, so it felt right to mark this point on our journey by sharing how thankful we are. Thankful to each and everyone of you who has been there for us during the last 394 days.
How’s Bilbo Doing?
I also wanted to take this opportunity to update you on Bilbo. It has been a while since i’ve shared the specifics of how Bilbo is doing. We are currently in cycle two of maintenance.
Bilbo will go through a total of 10 cycles (or thereabouts) and each cycle lasts 12 weeks.
Through each cycle he will have daily chemo, weekly chemo all in tablet form. And then on the second week of each cycle he has a lumbar puncture where he gets chemo into his spine at Oxford under general anaesthetic.
He has a weekly blood test, now done through finger pricks and more often than not this happens at school. He takes antibiotics every weekend and there are monthly chemo clinics with the team in Milton Keynes.
Bilbo is doing really well at taking his medicine, he’s happy taking tablets and once his liquid antibiotics runs out that will also move to a tablet.
BUT we are still facing the challenge of nausea.
Reflecting on last year, it was the 6MP that started to make feel Bilbo really nauseous and very very miserable in December. It crept up on us and then over took our lives in spectacular fashion.
We’ve been experimenting with different ways to take the 6MP. We moved from the liquid to the tablets, no change. We’ve tried morning instead of night. This makes no difference to how he feels but actually creates a lot of challenges. Bilbo can’t have milk with his chemo, so this means that a lot of his favourite breakfast options are out.
And we’ve tried different doses of his anti-sickness and every time it results in misery for Bilbo. He feels sick, he is sick and becomes really sensitive to smells.
We’re at the point now of acceptance. His chemo is back to evenings and he’s will continue with his anti sickness.
We’ve all also had our flu jabs. Which were a stark reminder that whilst Bilbo is often taking cancer in his stride. A routine flu jab manages to show us just how traumatised he truly is.
Rich and I took both boys to get their jab together. As we always do, we talked about what would happen, made a little easier by the fact Rich and I had already had ours the week before.
Why are we having a flu jab? Bilbo can't have the nasal spray up his nose because it is a live vaccine.
Bilbo got himself into such a frenzy. I held Harrison and he didn’t even flinch. But then he sat there wide eyed watching Rich trying to wrestle Bilbo out of his jumper for his turn.
Bilbo screamed and screamed. And got more and more worked up. It took me right back to those early days with cannulas and Peg injections. And his cries of “no mummy – make it stop”
And then Harrison got upset. Not because his injection hurt but because he hates to see his brother hurting. And so we walked out of the doctors with two wailing children. Feeling flustered and traumatised.
And i’m sorry, that I had to put both my boys through that trauma.
Saying i’m sorry is also something Bilbo has started to say. Only his sorry is starting to worry me. He says it often when he cries or gets upset about cancer related episodes.
Last week he got upset having his finger prick blood tests. I was in London and so missed the whole thing. When I saw him the next day I wanted to chat to him about his AMAZING achievement – moving up a reading level.
Me: Bilbo have you got something to tell me?
Bilbo: I’m so sorry mummy I got upset yesterday when I had my bloods done..
My heartbroke a little, we’ve always encouraged Bilbo (and Harrison) to express their emotions both happy and sad.
Me: Awww sweetheart it is ok to cry, you don’t have to be sorry. You’re really brave and I wanted to tell you how incredibly proud of you we are for moving up a reading level.
Bilbo: Oh yeah I forgot about that
Cancer continues to be a journey and something we work through and manage.
We have good days and bad days.
Looking forward we’re excited about the festive season kicking in, I am truly thankful that we are able to look and feel like a normal family again. And what is a normal these days anyway?
For me being normal is about being able to appreciate and enjoy the mundane days. The days filled with nagging about putting shoes on, school runs, story time, bedtime, cuddles under a blanket watching movies.
I am so so grateful for every one of those “normal” moments. And I am looking forward to a much more joyful December. I hope we never have to repeat the experience again: Surviving Christmas with Cancer was the worst.
And finally i’ve been treated to seeing three very special ladies today:
This morning I bumped into my very dear friend and ex work colleague Becca. By some strange coincidence we collided outside our office within minutes of me sending her a message (funny how fate does that) Becca has offered so much comfort and support through her words in some of the very dark times in the last year. It was a lovely treat.
I hosted a learning event tonight, where another dear friend was our guest of honour talking about AI. Siliva Cambie has been another staple by our side. Her sweet packages from the far corners of her travels often arrived at the most perfect moments to distract Bilbo and Harrison through tough days.
And finally I got to end my day with my gorgeous wonderful friend Philippa (and Jo x). P sorted out endless packages and parcels from colleagues at Pearson. She has been a shoulder to cry on countless times and is just a wonderful ray of sunshine to be around.
Today was a wonderful reminder of just how lucky I am to have such wonderful people in my life. And we owe so much to so many others around the globe.
Your love and support will never be forgotten and every morning we see the wall of love and are reminded how loved we are.
Every card, every message, every little package of love when we least expect it have all meant so much.
From the Godber family to you all THANK YOU!!!