I'm scared

Hi  and welcome to this corner of the Community, I am sorry that you had to find us and especially sorry to hear about your brother in laws AML diagnosis.

I am Mike Thehighlander and I help out across our various blood cancer groups. Although I have Non Hodgkin’s Lymphoma I do understand the challenges this diagnosis will being to all the family especially during these COVID times.

For some of the aggressive blood cancer presentations his initial treatment journey and timeframe is not that unusual, just made more complicated with the visiting restrictions but up with us in Scotland visiting us slowly being introduced.

During my many years on my journey part of my treatment required me to be in an isolation room that only my wife and a few adult friends could visit so I did not see my granddaughters for the 4 then 7 weeks. But even after ai got home I was not allowed to hold my latest granddaughter due to infection risk..... but we got through it.

The treatment needs to be aggressive to be able to put him in a position to control his AML to get him into remission and then look at a further plan to make this a long term remission.

Talking with others caring for family and friends will help a lot so do check out our Family and friends group as you will connect with others walking the same journey supporting family through their cancer journey and even more important how best to support during these COVID times.

It’s always good to talk and the Macmillan Support Services provides lots of information, support, financial guidance or just a listening ear.

Most services are open 8am to 8pm, 7 days a week and it's free to call on 0808 808 00 00 have a look by Clicking here to see what is available and we also have our Ask an Expert section, but do allow two working days for replies from our expert team.

To find information covering diagnosis, treatments and pages covering most types of cancers can be found on our Online Information and Support Section. 

Always around to chat

((hugs))

Hi Redditch

 I am so sorry your brother in law has been diagnosed with AML. The first few days of diagnosis is such a shock. I was diagnosed just under three years ago aged 61 and can remember the shock, denial and all sorts of emotions for myself and my family. It was quite a tough few months to begin with but hospital life and a different kind of home life became the new normal.I got into remission for several months and enjoyed being back to normal but unfortunately relapsed and went on to have a bone marrow transplant 22 months ago.I am now feeling great and my last biopsy showed full remission. I hope this can give you some hope for the months ahead x

Hi Redditch,

A diagnosis can come out the blue and it’s bewildering and shocking. I was diagnosed with AML just over three years ago, aged 48 with the FLT-3 mutation. One of the first things that my consultant told me was that I had age on my side. I had a fairly hard time with the treatment but others on the ward sailed through chemo. I never googled anything about AML until after my Stem Cell Transplant, it helped keep my head clear.

It can take some time adjusting to life in hospital, the noise, the routines and the lovely food but you are surrounded by people that care and want the best for you. I adapted quite quickly and as Parkrun Mark said - it does become the new norm.

Hi Redditch,

just wanted to message to say I understand exactly how you feel. My husband was diagnosed with AML three weeks ago, and has just finished his first course of chemo. We were told he will be in hospital for at least four weeks for this first round of chemo, and it’s been two weeks so far.

it was all very sudden for us too, and it’s a lot to absorb when things move so quickly. But we try and see that as a good thing, although it’s scary the speed everything happens, it’s great that he’s getting the treatment he needs. 

My husband is also 50, like your brother in law, and we have two grown up kids and a baby grandson. We’ve got a portal for Facebook calls - we find that really helps, as he feels like he is in the room with us when we call him. 

Hopefully your brother in law has now started on his treatment - obviously you know him best and know how to support him - for our family it’s a lot of bad jokes about baldness and him taking it easy in hospital, and plenty of messaging and FaceTime calls.

Sending you a big hug, it’s difficult for everyone in the family as well as the person who’s been diagnosed. 

Also - thank you to the others who have already replied to you - as someone in the same situation I’ve found your replies really helpful

My Dad had very aggressive AML and had loads of chemotherapy Arsenic and Atra tablets It was so hard for all the family and luckily he’s in remission It was his 73rd birthday yesterday He enjoys walking next to the local beach every day now and remembers when he couldn’t leave hospital for 4 months Hopefully he will get through it and have some precious time with his family xx

I too was diagnosed with an aggressive AML, I was at Worcester Royal from May until August 2020, one course of Chemo and my neutrophils didn’t recover for a long time so kept in isolation, not allowed home of course and no visitors because of covid of course. They decided to transfer me to the QE Birmingham for further Chemo and a Stem Cell Transplant, discharged 2020 and now home in Remission. My Chimerism was 96% in December 2020 and they are re-testing this month. I am hoping to have the first of my ‘childhood’ vaccinations soon, having to wait 2 years post transplant for the ‘live’ ones. I am doing well generally. The Survival rates quoted are of course scary along with hearing the diagnosis of course. I hope things are going well. Everyone involved in my treatment at all the Hospitals were wonderful, including the Hospital I was originally rushed to in Hereford.