Hi, mum got diagnosed last March with Acute Myeloid Leukaemia on the eve of lockdown. Mum had been diagnosed with MDS the August before. We knew something had changed early 2020 and mum kept telling her consultant but he just didn’t listen. 3 months later we get the AML diagnosis and our lives are turned upside down for more than one reason. She went to hospital to start chemo. 2 weeks later she tested positive for COVID 19. She was moved to a COVID ward where everyone was really ill and mum didn’t have any symptoms. Being on this ward really messed with her mentally and emotionally. After 2 weeks she was back on the cancer ward and starting her chemo. Mum coped really well with the chemo and didn’t have many major side effects. Through the rest of 2020 mum went through 4 rounds of chemo. She was told she was in remission in September. During mums 4th round of chemo she developed a heart problem therefore her treatment had to change.
Mum had been doing so well, she was able to do things for herself and go out without being out of breath and exhausted. It was fab having our mum back. In April this year she was told that the blasts were back and she would need to have injections every month to keep them at bay. The injections were for 7 days and they really took it out of mum. She was back to not doing anything, sleeping all the time and having no energy. The consultant was happy with the way things were going. Mum got tonsillitis at the end of June and that also took it out of her. At the beginning of July mum had a fall at home and was took to hospital. Unfortunately mum didn’t receive the best care while in there. It took me 2 weeks to get her transferred back to clatterbridge. The local hospital had left mum in a bad way, she had grade 4 bed sores and an infection that they couldn’t find but her infection markers where in the 250s.
Last week we were told that mum wasn’t strong enough to carry on with the chemo. Mum said she just wants to come home, we don’t know how long she has left. She is too weak to have a bone biopsy as they struggle to do one at the best of times. We have been able to go and see mum twice and we are waiting for her to come home.
I’m really struggling to get my head around how everything has changed in 6 weeks and that I have to face a future without her. We always knew our time was limited with the type of cancer mum has. But this wasn’t how it was meant to be.
If someone could direct me to a good group/s or where to get some more help and advise that would be great.
Hi bluebabe21
I'm very sorry to read that your mum has been diagnosed with AML but is now no longer able to have treatment.
You ask which would be good groups to join and those would be the AML and supporting someone with incurable cancer groups which I can see that you've already joined. The former is a great place to ask questions and share experiences regarding treatment of AML while the latter is specifically for carers, friends and families of people with a terminal diagnosis to discuss their emotions about the prospect of losing their loved ones, as well as practical issues about palliative care.
Sending a virtual ((hug))
"Never regret a day in your life, good days give you happiness, bad days give you experience"
