Help with what to ask for my child

[WakeMeUpInSilence]

Hi all,

I've been reading lots of posts on here in the last few weeks, have learnt lots and sending to all those going through it.

I have deliberately made the title vague and will spell out what cancer it is with other words in between, just because I'm trying to prevent it from coming up on search engines as I think this will be identifiable and I'm just not ready for that.

My late teen child has hodge random word kins random word lymph random word oma.

Diagnosed very recently and having the first meeting with oncology and haematology and just looking for advice on what I should be asking, what to expect anything really.

I am firmly in the can't believe it stage, I am better doing if that makes sense, hence why I want to be prepared. My child has a great support network, but equally is there anything else I can do or get to support them.

Apologies if any replies it may take me a little time to reply. I've got this nesting drive, I'm cleaning everything, just like I did when they were born, and figured I should take good out of a shit situation, so I'm off to scrub things.

I'm sorry I can't help with your question, just sending lots of love & strength for you both (all) 🤗🥰

I’m so sorry to hear this.
For the meeting listen but write things down as you may forget names etc
Ask absolutely anything and if you forget try to get hold of the medical secretary later
Ask about medical trials,support networks
Be aware meetings can be cancelled or results delayed when there are emergencies etc.

From a practical point of view for hospital
Own bedding
Cuddly / mascot
photos displayed
Fleece blanket
Rechargable fan ( to clamp on bed)
phone holder if needed
Headphones/ tablet etc
Food/snacks

Young Lives Vs Cancer offer excellent support
( previously Clic Sargent)

Do whatever it takes to get through. See your GP to get signed off sick if you need to. Try to eat when you can.

@FrozenFebruary thank you, it is strange how much a strangers response can help

@24Dogcuddler that is all helpful thank you. I didn't know young lives for cancer used to be Clic Sargent, remember raising funds for them as a kid, never thought I'd need them.

I can't go sick, no additional sick pay and have to keep paying bills, statutory won't pay for food, let alone heat and mortgage.

Do you have a partner/other kids/your own parents? You will also need to be looked after.

I’m sorry you’re going through this, it sounds like you’re coping the best way you know how which is amazing.

My brother went through something similar in the 90s, the hospital had a social worker then who could point you in the direction of benefits to help with the financial side of things if you need to take unpaid time off from work etc. even if it’s just for extra allowances to cover things like parking and your subsistence you should see if you can get some support. I think some councils also have a welfare rights service with specialist advice from Macmillan.

Wishing you all the best x

Husband and other kids thankfully.

Cant tell my parents, I'm a regular on the Stately Homes thread.

Thanks for the tip about parking etc, won't take much to tip us into debt so that will help.

I just feel so adrift, I wish it was me. My lifestyle deserves it- theirs doesn't.

Hiya. So sorry your family is going through this. I would suggest your child signs up with Teens Unite, it is a lovely social and psychological support network for teens and young adults and they really get what they all need. Teenage cancer trust can also be amazing. Please make sure you get support from other parents going through this too - again teens unite do parents meet ups and online support.

Cancer specific charities will often have benefits support and maggies and Macmillan do this too depending on your area. After a time your child can apply for PIP and you may be entitled to carers allowance.

The cancer you mentioned is much more treatable than many and there are new drugs which cause less long term side effects and are less harsh. The staff should be really nice and supportive in view of your child's age, there may even be a teenage cancer ward they can have treatment on - in the Christie Manchester and Bristol there are cancer beds for 18-25 with more fun facilities, relaxed visiting etc.

I also recommend the barrie wells trust for special days out to cheer them up.

I would say realistically you will need to take some time off work. You say late teen, so I’m guessing 16-19 years old? They will need a parent to attend hospital with them and support them through treatment. It doesn’t mean quitting work completely, but you will need to find a way to take time out and work reduced hours. Take a mortgage holiday, your Dh takes on an extra job (so you can step back a bit), benefits, my friend had someone set up a fundraiser for their family when their ds was diagnosed, it raised enough money to replace her salary for several months.

Thank you for your replies.

Chemo started today and they are really sick- waiting to hear is they need to be admitted - I knew it was going to be rough, but not that it would happen so quickly.

I have a daughter who got through cancer when she was 7 and is now 5 years on. It is such a hard time but you can and will get through it.
There are a lot of amazing charities offering support - young lives v cancer has already been mentioned, grace Kelly childhood cancer trust, kids cancer charity and several others. Reach out for all the support you can. If it's the same now as it was when my DD went through it your child will likely get higher rate DLA which will also get you a blue badge automatically, this helps The hospital will likely have access to a social worker who can help you navigate benefits etc.
Good luck x

@Silverwombat I'm sorry you have been through this. We have just been allocated a social worker so hopefully that will help

Have been admitted overnight as can't stop the sickness. I just wasn't prepared for this, which sounds ridiculous - just most things I had read was that it got worse over time.

Just an update, for me I guess more than anything else.

Admitted for several days, apparently the severity of sickness was not normal, new drugs have got this under control.

However now neutropenic, so worrying about that as well-.

The sickness is awful and distressing. Sending virtual hugs and support.
Just take one day at a time. It’s all you can do.
Thanks for taking the time to share an update.

No, thank you @24Dogcuddler for replying, irl I'm being so positive but screaming inside, it just helps to post here

I know everyone will think you are fine, coping, being strong etc. You are on auto pilot just doing what you have to do when you have to do it.
I’m glad posting helps.

If you can’t get time off work, ask if your hospital has a befriending scheme, ours does, they match teenagers and young adults with volunteers who are willing to come and spend time with them a couple of times a week usually because their parents need to work/have other kids and they appreciate some company. Other hospitals have more of a pool of volunteers on the teenage wards for similar reasons. (A lady I know still visits her match 7 years on, all grown up and cancer free). I know your post was about your child but make sure you look after yourself because you are no good to anyone else if you don’t. Take care

Really struggling tonight, child is fairly well after a very bumpy time, but it has hit me like a ton of bricks. Not helped by someone telling me about Chemo induced myloid leukemia, something which is normally fatal.
Why would you tell someone that, why am I spiralling when it isn't even something that has happened. I just want to go to bed and never get out.

Oh bless you, it’s so overwhelming isn’t it? Baby steps, take one day at a time x

Wanted to add, please ask for help if you feel overwhelmed. I didn’t, and 6 months in had a bit of a breakdown. I really wish I’d listened to my body, as it was screaming at me to slow down and I just would not listen x

Oh my god, what a nightmare for you. Sending you love and strength and courage. Remember to look after yourself too. You are a vital part of this journey

Thank you. Having to be strong in real life and not admit anything it really helps to just have someone hear me.

You’ve got this. Stay away from Google if you can. I know it’s a living nightmare. You just put your game face on, smile and face each day. Certainly takes its toll.

I've had a real weep today. DC is back in hospital which was unexpected, this was meant to be a 'rest week'.

I'm sure everyone on this forum feels the same, having a real, why us moment.

The worst thing has been my phone, I can't go on social media anymore as it keeps promoting threads of children with cancer, unknown side affects of the treatments, memorial pages. I just need that mindless escape. (That sounds heartless to all the broken parents that are making these accounts, I don't mean it like that, just that I can't face that at the moment)

So sorry to hear this. I’ve only just seen it. They must think DC needs to be there but it’s disappointing (understatement) when you were all meant to be on a week off especially at Easter.
You must be so tired. Glad you are staying off social media. Keep away from anything or anyone unhelpful.
Do what you need to just keep going one step at a time. Sending support and thinking of you.

Your kindness made me cry @24Dogcuddler thank you, I feel like it is only here that I can not be strong.