Hi All,This is all very scary and new to me so bear with.I have been diagnosed with having Acute myeloid leukaemia (AML) a few days ago,I’m female nearly 52 and my name is Sarah.im being admitted into hospital on Monday so they can Start tests,then Chemotherapy,will obviously find out the plan when I arrive.I haven’t had a wobbler yet,my emotions are all over the place,but trying to stay sane for my lovely family,the support that I’m getting is so comforting.Im sure it will hit me when I arrive at the hospital on Monday,it’s all very scary.But they are on it,just wanted to introduce myself,any tips and advice would be greatly appreciated.Take care all.xx☺️
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Hi @Millsey73
Welcome to the forum , I have a different diagnosis so cannot give any wise words or advice about your situation unfortunately. I did however want to say how sorry I am that you are having to deal with so much and are going through this scary thing.
I remember how terrified I felt when I was diagnosed and how grateful I was for having this space to ask questions and seek reassurance
I am sure someone will be able to give you some helpful advice and reassurance. Please have a look at some of the pages in here and contact the team, they are brilliant
Take care and let us know how you are getting on x
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Thanks so much @Millsey73 for being so brave and posting on our forum, you are now part of our forum family.
Gosh everything is happening quite quickly.
I was diagnosed with Chronic lymphocytic leukaemia (CLL) 20 yrs ago and medical lingo still goes over my head.
I was diagnosed at 53yrs old.
I have found there has been a lot of waiting around and not knowing and that makes me anxious and scared.
I found that I have a wobble when I go into hospital. Suddenly I feel so isolated and lonely, but the nurses have always been lovely.
My thoughts and emotions also are all over the place and often not logical.
I am so glad that you have a lovely family, they are priceless.
My handy tips are to be ever so kind to yourself.
Take things into hospital that you enjoy, but don’t take too much concentration.
Keep notes on what is happening and when, perhaps how you are feeling every day.
Write down all fears, questions and practicalities to ask your medical team and perhaps the answers. Tell them if you get any symptoms and keep asking them questions and tell them when you are anxious.
Take loose comfortable clothes to wear.
Depending on how long you are staying you might have access to a fridge for some snacks.
The Blood Cancer UK support line is there for you on 0808 2080 888
Please do keep posting as I really look forward to hearing more about you.
Finally, the most difficult for me, ask for help and receive it.
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Hi Sarah
Looks like we are on a very similar timeline. I was diagnosed with Acute myeloid leukaemia (AML) 5 days ago and been in hospital just over a week. Things have moved very fast and due to start chemotherapy on Tuesday
I’m 35 and have felt pretty numb since being told the plan. Please keep updated when you know more it sounds like we are both at the start of a long journey
Lyndsay xx
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Hi LyndsayE, I thought I’d reply to your message,it’s a scary time,I’m going into hospital tomorrow,as an impatient,they are doing tests and hopefully start chemotherapy middle to end of next week.Please keep in contact with me as we are going through the start of this journey together.Take care,thinking of you.xx
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Hi @Millsey73 and @LyndsayE, sorry to hear about your diagnosis, you have found a great forum to help you through your journeys. I was diagnosed with Acute myeloid leukaemia (AML) 3 and half years ago at 43 years old. I’m fully recovered and living a normal life so stay positive and take each day as it comes.
You will be given lots of information over the next few weeks/months, always ask questions if you are unsure about anything. Also if you feel that something isn’t right then tell the medical staff or get a second opinion.
You can be in hospital for weeks at a time so always take plenty of things to keep you occupied. The rooms can feel cold at times so I took a single duvet and my own pillow for extra comfort.
All the best to both of you x
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Sarah I certainly will, already a comfort not to be quite so isolated despite having wonderful support around me. Was very much feeling like this is all on me.
Was very nervous about the picc line going in but this was so straightforward - celebrating these little wins and positive steps each time i get though them. Thinking of you and sending hugs x
@Muzza thankyou for the message and inspired by your recovery, long may continue. It is definitely information overload at this point! Any other tips welcome too
L x
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@LyndsayE tips I would give you are
Always take someone to your appointments as the information can be overwhelming and it’s good to have a second set of ears.
Side effects are different from person to person, don’t be scared of them as they might not happen but you can always get something that isn’t listed as well.
A Hickman line or a picc saves you from getting needles in your arm constantly but they can be problematic as well. I had both, Hickman worked better for me.
Always tell the nurses if something isn’t right doesn’t matter how small it is it could be an indicator of something else.
If you are an in-patient, try and get into a routine, just having a shower always made me feel better.
Get a VPN on you phone or tablet then you can watch more things on them as hospital WiFi/TV usually limits what you can get. If it’s free then that’s a bonus but also have a sim with enough gb’s to keep you entertained or for FaceTime with family and friends.
Depending on which hospital you’re in the food may not be great so have someone bring you things you like. Some hospitals allow you to order takeaways.
Take each day as it comes, it’s not a race.
If you’re tired just have a sleep no point fighting it, rest is good for your recovery.
Lots of good support around which is definitely worth using.
If you’re driving into the hospital ask about free parking again some hospitals offer this if you’re receiving treatment.
There can be a lot of waiting around at times which can be frustrating especially when you’re tired.
Remember everyone is different and the treatment can affect you in different ways so what others have been through might not be the same for you.
Stay positive, take each day as it comes but also have goals to help you get through the tough times.
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Hi @LyndsayE welcome, you show one of the benefits of our forum, not feeling alone or isolated, things have also moved very quickly for you.
I think I felt numb for a long while, It’s a body protection mechanism.
I felt in a bubble with the world going around me as normal.
The Blood Cancer UK support line is also there for you on 0808 2080 888.
Please do keep posting how you are doing and really be very kind to yourself
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Thankyou Erica i appreciate it
Just to say i started FLAG-ida chemotherapy yesterday, so on day 2 of 6 today. The waiting to start was tough but glad to be on my way with treatment
Thinking of you @Millsey73, let us know how things are xx
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FLAG Ida was the second chemo I had, hope it goes well 
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Hi @LyndsayE yes, I agree the waiting is always the worst.
Please do let us know how you are getting on.
Be very kind to yourself
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My husband also had flag Ida as his second chemo. He had his transplant for Acute myeloid leukaemia (AML) in June and is doing well. Thinking of you. This forum is wonderfully supportive so keep posting!
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@Millsey73 how are you doing? Hope this message finds you ok and that you’re being kind with yourself. I’m almost a year post my Acute myeloid leukaemia (AML) diagnosis (I’m 45 now) and doing ok.
I remember the early treatment well and the exhaustion treatment took on me. Just remember baby steps and take positive in that many of us on here are supporting you. It does get better just often doesn’t feel like it at first.
Take care
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