Peidiatric oncology is absolutely outdated.
Being sent to the.... Together for short lives plop... And don't think anyone actually wants my son to live or even try.
I'm tired of looking and finding things proven to help that won't be done due to ... "We don't do that." And "If you find a specialist we will correspond"....
My son is now in pain, blind in one eye and can't walk.
My sons cancer is deforming him his face his head you can see it clearly.
we are now having to wait for a trail he may or may not get on.
We as in the family are not allowed any treatments, his emergency radiotherapy needs a "wash out" of 2 weeks min, so nothing incase he does get on the trial.
So we sat here with pain meds and a wait... And the prepping for the worst, via Macmillan nurse.
I curse the day my son was taken to the absolute mockery of a hospital.
The doctor that thought holiday was worth postponing a scan. The pediatrician that first saw him and said he was fine see you in 6 months. The covid excuses, Not following the protocols they blasted at me when questioned.
My son is and has been failed by everyone.
Truth is... There is no real support. If it's to hard noone will put extra effort in.
Just some words on a screen that no one really cares about but needs putting somewhere.
Poor thing, how do they cope, aww life is so unfair, I'll pray for you bla bla bla.
I don't think I will post again. Apologies if this has upset people.
Hi ccskmomma
I'm so sorry to read everything your family has been through and although I don't really have any words of advice I didn't want to leave your post unanswered.
I was wondering if you'd spoken to PALS (Patient Advice and Liaison Service) at your hospital as they can help when you have concerns or problems with the NHS.
You could also give the Macmillan Support Line a call on 0808 808 0000. It's free to call them and they're available every day from 8am to 8pm.
Sending virtual (((hugs)))
"Never regret a day in your life, good days give you happiness, bad days give you experience"
