No beds for treatment

Hi
First time poster here……
My son was diagnosed with both Acute myeloid leukaemia (AML) and ALL leaukemias at the end of January. A difficult start saw a stint in ICU.

After 5 weeks he’s been allowed home with a plan for him to return for second chemo cycle on the 10th March…. However he’s still home as no beds… hospital don’t seem worried it’s the norm apparently ? Is it? Will this always happen at the start/end of each cycle

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@Olive1970 welcome to the site, a place none of us expected to find ourselves.
If you haven’t had a good look around the site, try entering your son’s condition in the search bar and see if anyone else has posted about this.
Also there is a phone number tel:0808 2080 888 if you feel the need to reach out to the support team on here.
I am also sure many on here will be able to relate to your situation and give you the benefit of their personal experiences
I hope you get your answers soon

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Welcome to this forum! Hopefully someone will be along to answer soon with personal experience.

My husband was diagnosed with Acute myeloid leukaemia (AML) in late October 2023. Whilst we haven’t personally experienced this, I am aware that one of our local hospitals can struggle with beds for oncology and haematology and they do have to balance the needs of all patients care. I think in some instances, people are provided chemo in a pump to leave the hospital and return for monitoring / infections.

Does your son have access to a clinical nurse specialist for his leukeamia? They might be best placed to explain what the situation is and any timeframes , as well as why this isn’t a concern for your son’s care plan.

Sending hugs to you as I can imagine how stressful this might be, on top of everything else you’re having to deal with.

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Hi @Olive1970 I am so glad that you have found us and posted and I hope someone will be able to share their experiences.
However personally I have found since my diagnosis there has been a lot of waiting around. and cancelled appointments.
Keeping in touch with my specialist nurse definitely helps me.
You do not say how old your son is but If he is classed as an competent adult then he should be doing the chasing
How are you coping? It can be tough being a parent and powerless to make your child better.
Be very kind to yourselves and please do keep posting how it is for you.

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@Toadmum
Thanks so much for your response I’ve popped an email to the specialist and had a response
Also I’ve followed your posts and they have truly helped me understand the path we will be following
Thank you

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@Erica
Thanks for your response
He’s 27 and yes your right he should be chasing and is - I thought I’d just help out

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Hi @Olive1970 you are a mum, it is natural to want to help, don’t beat yourself up and please do keep posting, we are here for you

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Hi @Olive1970,
It sounds like you have all been through an incredibly frightening & difficult few months. You will have been so pleased to see your son discharged back home for a few weeks & it is no wonder you are keen to help out & support in any way you can.

I’m sorry to hear that your sons chemo has been delayed due to a lack of bedspace. Sadly it isn’t unusual that inpatient admissions are delayed for this reason. The haematology team will be monitoring the situation closely and would not put your son at any risk by delaying. However we appreciate that it is anxiety provoking & frustrating for you both.

It’s great that you have been proactive & contacted the team- have they came back to you & offered any timeline or reassurance?

I would also be keen to know if your son has a clinical nurse specialist ( CNS) contact as they will be a great resource for you both in both advocating & communicating

Moving forwards I would encourage you or your son to keep in close contact with his haematology consultant & CNS so you are both given reassurance and kept informed.

May I ask how your son is feeling just now?

If at any point you would like to talk things through with us, we would love to support you both in any way we can- Blood cancer information and support by phone and email | Blood Cancer UK

Take good care & keep in touch, Lauran

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Thanks for the responses
He’s back in hospital now bed became available late last night - chemo started again this morning

I’ve noted to contact the CNS and I fact just met him in person!

Now for 6 days of chemo :slight_smile:

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Hi @Olive1970,
This is great news and we appreciate you updating us! We don’t underestimate this must all feel a bit like a rollercoaster right now so do lean on those around you and ask as many questions as you need to along the way.

I hope this cycle goes smoothly and you all look after each other.

Speak soon, Lauran

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Great news @Olive1970 that there is now a bed available and now please do really loo after yourselves, both of you.
Please do keep posting we are here for you as well