Tomorrow will mark a whole year since Ellis’ operation to replace his femur and tibia with a titanium implant.
A whole year…
It doesn’t seem possible.
When lockdown was a scary rumour and the only bubble was my little family.
Yesterday we had a check up back up at Stanmore with his surgeon and an X-ray on his leg.
Armed with lots of questions, we were excited to go.
One of my favourite things that came out of Ellis diagnosis was the road trips. The few hours in the car, feeling protected and looked after. Feeling like every mile closer we got to the hospital, the more safe we felt. It was a destination to being better. That’s how I saw it.
You learn to trust the team looking after you because frankly, you don’t have another choice.
He has the best surgeon in the field and the best oncologist. A real life dream team.
When we arrived, it was quickly made apparent that he wouldn’t be seeing his actual surgeon. It was a lady who we have never met. She didn’t know Ellis or his case and that was very obvious to us as soon as we walked in.
As soon as we walked in she said ‘“You’re limping”
Hello to you too and yes, this the reason why I wanted a face to face and not a telephone call.
I spent the next 20 minutes feeling like a naughty kid in the heads office.
She made me feel so small and insignificant.
I always ask questions, no matter how silly, because I want to know. But I stopped asking with her as she made me feel so stupid.
Ellis spoke about his charity walk and she frowned.
“Well… we don’t want him running any marathons. We want this leg to last”
To the boy who had faced so much uncertainty in his life, so get back up on his feet and try so bloody hard… for her then to say that? No thank you.
His actual surgeon is an incredible man, encouraging Ellis to weight bare as soon as he woke up from the op. Filling his head with a ‘can do’ attitude and that cancer will not stop him from anything.
And here she is, undoing all that positivity in one sentence.
Nice one 👍🏻
We then spoke about his leg and muscle mass. She pointed out he still has a noticeable smaller thigh on his bad leg, to which I replied that he is working so hard with his exercises to try to build it back up.
This is what she said and how she said it.
“Why would you try to do then when he doesn’t have muscle there in the first place..?”
“They took two of his quad muscles out when they operated, so no amount of squats will build it back up”
A year down the road and they are just telling us this now??!!
A year of Ellis fighting to achieve and get ‘hench’ in his words…. to be told actually your leg will be like that forever.
Also, due to this, his knee will tend to bend to the left. Watch out for that.
Wtf?! I asked her what we can do to support this and she shrugged. Legit shrugged.
She then measured his legs as we are concerned that one is still longer than the other. We were right.
His bad leg is longer, but his femur part is shorter. So his bad knee is higher up then his good knee, but his tibia on his bad leg is longer. Basically he is all over the place.
She said because they had to cut away more femur than they originally measured, the implant sat up higher, meaning his knee would be higher.
She then flippantly said he would need an operation.
I’m sorry… what? Casually saying to the boy who has been through a year of hell, that he needs another operation and not elaborating on it was a good idea in your eyes..?!
I asked her to clarify.
Huff at me all you want love, my boy needs answers.
She said yes. He would need an operation to remove the growth plate in his good leg, to stop him growing.
Even though his good leg is shorter.
And his bad leg is extendable.
Excuse me for being dumb, but give me something to work with here… I’m confused.
She then changed her conversation onto his oncologist.
She very bluntly asked me what his oncologist said to me 3 months ago.
Oncology and surgeon appointments are very separate. I honestly wasn’t sure what she meant.
She said the same exact words back to me.
I mean, you can keep asking but I still have no fucking clue what you are going on about 🤷🏼♀️
A huff and an eye roll later, she said she meant about his lung nodules.
I said he had an X-ray last month and I have a telephone consultation with the oncologist tomorrow. Why’s that?
She told me nodules showed up on his X-ray. She was looking at it now.
The X-ray that we don’t know the results for until tomorrow.
Nodules? On his lungs? Again?
I started to panic. She then realised and backtracked.
We then left.
The drive home was quiet.
We were trying to process this in our head… but didn’t know where to start to make sense if it all.
None of it made sense.
So now, here I am, on the eve of his 1 year operation anniversary, feeling like the very beginning all over again.
I’m trying to be positive.
I’m trying to make myself think that tomorrow, his oncologist will ring me to tell me she got the wrong child and that it’s all fine.
Until then, there is not a lot I can do.
Ellis’ first words he spoke after diagnosis, echo through me tonight.
“What’s the point of worrying, it won’t change anything”
I know he’s right. It’s the mantra that I’ve lived by for the last year.