Tomorrow will mark a whole year since Ellisā operation to replace his femur and tibia with a titanium implant.
A whole year…
It doesnāt 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. Thatās how I saw it.
You learn to trust the team looking after you because frankly, you donāt 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 wouldnāt be seeing his actual surgeon. It was a lady who we have never met. She didnāt 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 āāYouāre limpingā
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.
āWell… we donāt want him running any marathons. We want this leg to lastā
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 ācan doā attitude and that cancer will not stop him from anything.
And here she is, undoing all that positivity in one sentence.
Nice one šš»
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.
āWhy would you try to do then when he doesnāt have muscle there in the first place..?ā
Erm… pardon?
āThey took two of his quad muscles out when they operated, so no amount of squats will build it back upā
Huh…?!
A year down the road and they are just telling us this now??!!
A year of Ellis fighting to achieve and get āhenchā 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.
Made sense.
She then flippantly said he would need an operation.
Iām 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… Iām confused.
She then changed her conversation onto his oncologist.
She very bluntly asked me what his oncologist said to me 3 months ago.
I paused.
About what?!
Oncology and surgeon appointments are very separate. I honestly wasnāt 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 š¤·š¼āāļø
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. Whyās that?
She told me nodules showed up on his X-ray. She was looking at it now.
The X-ray that we donāt 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 didnāt 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.
Iām trying to be positive.
Iām trying to make myself think that tomorrow, his oncologist will ring me to tell me she got the wrong child and that itās all fine.
Until then, there is not a lot I can do.
Ellisā first words he spoke after diagnosis, echo through me tonight.
āWhatās the point of worrying, it wonāt change anythingā
I know heās right. Itās the mantra that Iāve lived by for the last year.
Fingers crossed
Xxx