Just received diagnosis

Hi Closeburn and welcome to this corner of the Community although always sorry to see folks joining us.

I am Mike Thehighlander and I help out around our blood cancer groups. 

I don’t have AML but was diagnosed way back in 1999 with a rare incurable but treatable type of skin Non Hodgkin’s Lymphoma Stage 4a and although my blood cancer ‘type’ is different I have experienced most types of treatments used but not necessarily the exact same drug mix.

You have certainly hit the ground running with the speed things have developed but this is often the case with AML.

It’s a challenge being in hospital for 3 weeks at a time for treatments. Although different, I was in for 4 weeks for both my Stem Cell Transplants.

This list below is copied from a thread in our Stem Cell Transplant group about the things that were helpful when in for such a long period of time.

I am sure that some of the AML folks will be along.

I took lots of books but never opened any, you may not feel much like reading or concentrating a lot. But did use AudioBooks as I could set the timer and it was a good way to fall asleep.

Trashy tv, films on iPad or DVDs check to see if there is a DVD player.

Word games, grownup colouring in book.

Short subscription to Netflix but check if there's free internet access or whether you need a up your data for a short period.

Favourite music, comfy headphones

Magazines

Favourite duvets/pillows, but plenty of changes as daily laundry will be needed as bed is changed religiously every morning.

Comfy clothes, nightwear and dressing gowns/onesies, slippers. I wore jogging bottoms and T shirts a lot.

Plenty of underwear changes!!!!

Favourite hand cream/lotions bearing in mind you might not want them afterwards because of association! 

A few photos/posters to put up

Don't forget laptop, phone, tablets plus CHARGERS

Some folks took in Quilted toilet roll and wet wipes. If you get an upset stomach you don't want to be using too much of the hospital toilet roll that's for sure!

Boiled sweets for the chemo taste

Take a notepad with you as questions pop into your head at odd hours and also you think of things you would like to do once you recover. Helps if you with your chemo head..

I had to have a change of absolutely EVERYTHING I WEAR every single day the entire duration so the laundry challenges were real as we were 9 hrs round trip away from home.... it looked like my wife and I were away on a world cruise

I had great Silicon Gel ear plugs (Boots?). I had the room next to the nursing station and you could hear them all the time, phones and alarms. The ear plugs were wonderful. I actually slept through a few night time obs

Blackout face mask….. there is never any darkness in a hospital.

Hi

Thanks for your quick and helpful reply.

Earplugs are to hand - my husband is a terrible snorer! I wouldn't have thought about toilet paper.

From your Highlander name I guess you are in Scotland, was your treatment in Glasgow? I'm in D&G and waiting to hear from the Beatson.

Thanks again, did you forget to say that I will only need a tiny bottle of shampoo?!

S

Yes I am in Inverness and my main chemo and some of my radiotherapy was in Inverness but my two Stem Cell Transplants were at the amazing Beatson so we got to know The Beatson and The Pond Hotel very well - we must have done the 9hr round trip 30 odd times over my treatments 

You can see my story by hitting my community name and it’s akways worth putting some I go in your profile as it helps folks reply to you with out your repeating everything.

Hair products are definitely overrated at times…… even 5years 10 months on from my last Stem Cell Transplant my wife is still jealous of my smooth legs ((hugs))