Hi. I’m having a bad night and found this group. My mum, my wonderful mum, was diagnosed with AML 6 weeks ago and it’s been a tough time for us all getting used to this. It’s the uncertainty of what’s to come that is getting to me. I am so scared she’ll suffer and I just can’t bare to think about life without her. She’s been so brave so far and the team around her say she’s responding well. Her second round of chemo is due to start soon, she has injections and pills. We are waiting for the results of her recent bone marrow test. I’m signed off work and am with her as much as possible and I don’t always feel as low as I do tonight. I just love her so much.
Hi ClaireLR and welcome to this corner of the Community although I am always sorry to see folks joining us and especially to hear about your mum’s AML diagnosis.
I am Mike and I keep an eye on our various Blood Cancer groups.
I don’t have Acute Myeloid Leukaemia (AML) but for some context I was diagnosed way back in 1999 at 43 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell was then presenting so although my Blood Cancer ‘type’ is different I most definitely appreciate the challenges of this journey rather well.
The early days are ever so challenging as you come to understand the journey your mum is now on and look for her treatment regimen to kick in.
Let’s look for group members to pick up on your post and get back to you. You can also click on the main ‘AML Group’ title and this will bring up all the group posts. Have a look at the posts and as always you can hit reply to any post and connect in with the wider group conversations.
As for the practical and emotional challenges of supporting your mum and indeed yourself you may benefit from joining and posting in our general……
…. support group where you will connect with a wide range of members navigating the exact same support challenges…… although this group is not AML specific as it covers all cancers.
You may find it helpful to call the Macmillan Support Line open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. This service provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear.
For good information do check out Leukaemia Care UK who produce very good information and run various support platforms including their Buddy Scheme, they also have a Support Line on 08088 010 444
You may also want to check to see if you have a Maggie's Centre in your area as these folks are amazing and support everyone in the family.
Always around to help more or just to chat ((hugs))
Hi Claire, I know how it feels, its all totally overwhelming. My husband has had 4 months of hell and was finally diagnosed with AML 2 months ago. He had his first chemo and its frightening, he had every illness and infection under the sun. I hear every word you are saying and I am sending you a useless but very big hug.
Most days I feel useless, hopeless, fatigued, elated, scared and every single roller coaster ride under the sun goes on. My husband is all I have and I am so fiercely protective of him. We want to love and support and take the hurt and illness away but its all in the laps of science and our hopes for improvement or remission.
You are not alone, even though you probably feel it, there are amazing nurses and Drs and Consultants dealing with your Mum, I have found the staff nurses and HCA the most beautiful souls and they lift my husband when I am not there, I am sure they do the same for your Mum.
I don't have any magic advice for you Claire, we take it hour by hour as he changes so many times in just a day. But what I do is video him on the good days, have little messages and when it hits me on a bad day, I play them.
We put one foot in front of another and we just try the best we can as this is all just ****! We are not super beings but I do know that everyone going through this, is amazing. I am in full admir
tion for their strength, tenacity and fight and pure bravery. I wish you and your Mum all the best Claire and lean on as many services as you can for yourself, definitely counselling and maybe visitone of the cancer charities like Maggie's or The Mulberry Centre, as I have found them a little beacon for me. ️ x
