*Thank you for posting this. I can't imagine how tough this must be for you. Your strength is incredible.
What supper do you, as a mother, get?
Literally whatever I can lay my hands on, as I said upthread, I take things like pot noodles, cup a soup etc, but largely I don’t get to eat until DS is safely asleep and won’t ‘miss’ me.
Is there anyone who can see when you are struggling and steps in for a short while so you can regroup?
We have a great Clic worker and an outreach nurse who can offer services such as home visits, counselling (yes, a lot of parents in my position are traumatised and end up needing therapy)
What has been the most surprising thing you've encountered along the way.
The sheer number of children diagnosed each week, 1 in every 285 children will have a diagnosis of cancer.
The fact that only £3 in every £100 donated to cancer research provides funding for research into childhood cancer treatment.
But most of all, the support from people you would never have met or become friends with if it wasn’t for my child’s diagnosis, to not sound cliche, “cancer makes friends strangers, and strangers friends” regrettably, DH and I have realised who is and who isn’t supportive protective factors in our lives and situation.
How do you manage your anger at the doctors who made the diagnosis so drawn out?
I blame lack of funding and training. 9/10 parents I have met whose child had a diagnosis of lukaemia were investigated for child abuse/neglect due to the bruising and weight loss that it presents with, GPS and physicians very often opt for the most obvious cause, in my sons case he presenting with severe swelling of a limb that on the face of things looked like he had fractured it, he woke up in discomfort and swollen, I took him to A&E, I couldn’t explain how his limb ended up in that condition, so naturally they assumed child abuse. It was only when they xrayed him that it because apparent there was a deeper problem, from that they assumed severe infection of the bone.
Hope these aren't insensitive questions. Ignore them if they are.
Not at all, parents in my position want to be asked questions, if one reader of this thread ends up (hopefully never) seeing the combination of symptoms that present in childhood cancer and gets their child diagnosed sooner, then it’s worth being asked every question you can think of. It’s too late for my DS, but hopefully his story can help save others.