Hello, I just wanted to share my mum’s experience with AML and hopefully give everyone hope and positivity when diagnosed with this condition. So my mum was diagnosed with AML end of November 2020 after going to GP multiple times for about two months before her diagnosis. After doing her research she knew it was leukemia. The only symptoms she had was swollen gums and she was tired. So chemo started but after induction treatment doctors informed us that she will be needing a bone marrow transplant. As you imagined another chemo started, infections followed many hospital admissions and uncertainty. Despite the fact that things were really difficult for her my mum was always positive, she did have her moments when she told me she was afraid to die but she never gave up. So after a few months in May 2021 we finally got a letter saying that mum was in morphological remission! Doctors were positive however, mum still remained MRD positive but doctors said that bone marrow transplant can go ahead. We didn’t have a long time to celebrate as after two days that she got this letter my mum woke up and she couldn’t move her left arm. I immediately rung the hospital and mum had an MRI scan. The next day we got the results and the doctors told us that my mum does not have long to live as her leukemia has spread into her brain but they couldn't rule out an alternative brain cancer. I couldn’t believe it! When you hear such things you immediately lose hope. They said that my mum’s prognosis wasn’t good and that bone marrow transplant can’t go ahead now and that it was only a case of managing her symptoms and 5 radiotherapy sessions to just ‘buy’ her time. They were very clear to tell me that my mum had 2-3 weeks maximum to live after showing me her MRI scan. I didn’t tell my mum how long they thought she had. The same night we had a long talk discussing about this and how we wanted to spend our time together as a family with my sisters and dad. However, when we woke up in the morning my mum told me that she does not want to die and that she won’t let this happen. When we arrived home and after finishing her radiotherapy my mum was very poorly. So me and my sisters and mum decided to change her diet and try some alternative things. We give her loads of vitamins follow an alkaline diet, plenty of vegetables. My mum is moving her left arm her walking has improved and she does not forget anything when we are talking! We go out and she has never been better since her diagnosis. My point is never listen to anything negative always believe that something good may and will happen even after a really bad discussion with your doctors. Always have faith and BELIEVE in yourself. I may not have been through what my mum is going through everyday but I am with her all the time and help her remain positive. We go out and have fun, follow a healthy lifestyle and are very very positive for the future. To all of you going through bad times, believe in yourself, fix your diet and your mental health and don’t always believe what they are telling you because this may affect your health. Good luck to all of you and sorry for the long post :)
Hi and welcome to this corner of the community. Thank you for taking the time to put up your post. Your mum’s story and the families perseverance is amazing and a great encouragement.
It’s been a rollercoaster 8 months for you all and it’s so good that your mum is doing good and let’s look for this to continue.
Conditions like AML and my very rare skin Non Hodgkin’s Lymphoma are very unpredictable, healthy choices and life style will always make a difference to our wellbeing.
I have in the past taken some of the advice from my consultants (I was diagnosed back in 1999) with a pinch of salt but at the same time my various teams experience and perseverance saved my life, taking me from being 70% covered with blood cancer skin tumours to being in full metabolic remission back in Sep 2016 for the first time in over 17 years.
You never give up hope as there is always hope until there is none…… but that should never be our focus, we look for the good in every situation and live each day with thankfulness and hope ((hugs))
