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 and welcome to the Online Community but so sorry to hear about the journey your mum has had.
AML at the best of times is hard but add the problems of this last year and the challenges in her treatment it just made thing much harder.
When it comes to the practical challenges of supporting someone you may benefit from talking with others caring for family and friends and I see you have joined our Family and friends, Carers only and Supporting someone with incurable cancer groups where you will connect with others supporting family and friends
Why not introduce yourself to the groups by putting up a ‘New Thread’ or hit the box with the X on the top right (phones), you could just copy and paste the text from this your first post. You can also join in with existing ‘Discussions’ by clicking on 'reply'.
It’s always good to talk so do call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, support, financial guidance (that I see you have found) or just a listening ear.
We also have Cancer Nurse Team in our Ask an Expert section, but do allow two working days for replies from our expert team.
All the very best ((hugs))
