Osteosarcoma

I hope you enjoyed your party, Boris

My little family is still suffering from the trauma of Ellis’ cancer, well my cancer too. Except mine was different. Life was normal when I was ill, so my kids could be distracted.

When Ellis was ill there was no distracting. There was no family support or visits from hospital. There was no one there for me to hold my hand on the days I felt like I wanted to give up.

All because of covid.

The same covid that you pretend didn’t exist while having your Christmas parties.

While I and other oncology families, we’re forced to try to celebrate a makeshift Christmas with no one around to support us when we needed it the most.

I have lost count of the number of hospital appointments I have had to take Ellis to on my own and now beth.

No moral support for me. No one else to listen for information and share with after. Just me.

It’s always been just me since the beginning.

Siblings who felt so far removed from the cancer world because they weren’t allowed to visit, while simultaneously thrown into said world and forced to carry on alone because of shielding.

There were no happy family days out during chemo breaks.

Boris stopped that.

There were no dinners and drinks with the girls to help this tired mama empty some of her metaphoric bucket in order to cope with whatever the next day brings.

Boris stopped that too.

There were no therapeutic camps for siblings or visits from amazing charities for them.

Yes. Boris stopped that too.

All the while he was celebrating Christmas with cheese and wine, with no second thought for families like ours.

Even now, nearly 2 years after the pandemic hit, I’m still going it alone.

Whilst most of the world has reopened, hospitals haven’t. Not properly.

It is still only one person per child at appointments. One person per child at operations and dreaded biopsies.

I’m still alone.

Now with my daughter being on a 2 week cancer pathway referral, I had hoped it would be different. But no.

Boris has still stopped that.

So here I am, Groundhog Day, back to March 2020 when I was faced with pulling up my big girl pants and marching on.

But this time I am also dealing with the aftermath of one cancer journey.

I have one child who is being extremely difficult and refusing to go to lessons. Lying incessantly about anything and everything and who is genuinely experiencing some kind of trauma.

One who is refusing to go to school because he is so far behind, because cancer took that too. Something that I fought so hard for it not to take. But it took it anyway.

One who is left in limbo about her own possible cancer diagnosis. Left to just ‘wait for an appointment’ 3-4 weeks into a urgent 2 week cancer referral appointment. Standard.

Then we have the little one. The one who’s long awaited ASD assessment was cancelled Monday due to staff sickness. The one who is a ball of anxiety around everything. Trauma based? Who knows. But it’s fucking hard work.

Do people have a limit? I’m genuinely curious because I feel like we don’t. Or I don’t certainly.

If I had a limit it would have come and gone a long time ago. Now I’m running on empty.

But we know more than most, things have to carry on.

If I stop, it all stops.

No pressure.

Xxx

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