End of Life AML

I lost my mum to Acute myeloid leukaemia (AML) less than 24 hours ago.

My mum was diagnosed in 2019 and was put on Azacitadine which started to work after three months in hospital. She was told to go home and get her affairs in order as the treatment lasted for about two years. Four and a half years and 51 cycles later mum started to have repeated urine infections. Her blood results came back perfect until January when her neutrophils did not recover from her December treatment. Fast forward to the end of March and she was told the leukaemia had returned, it had mutated and was aggressive.

Her haematologist wanted to try her on Vaneteclax and Cytarabene necessitating her going into hospital for five days. They said that there was a 50/50 chance it would work and they would know after the first treatment if it had been successful.

The day after going into hospital mum caught a life threatening virus but, she came through. After five weeks of being in hospital she was told that the treatment hadn’t worked and she had weeks or months but not many left to live. She had over 90% blasts in her bone marrow.

It felt like every time there was a bit of hope such as a chance the new regime might work, she would maybe have a couple of months with us or, she would get a couple of weeks at home, the Acute myeloid leukaemia (AML) had other plans. It would lull us into a false sense of security. On a Friday mum was told by a doctor she looked well and didn’t need palliative or hospice care. On the Monday she was told the leukaemia cells in her blood were increasing rapidly and she had a couple of weeks left.

Mum started to decline four days later and what she went through was heartbreaking. My sister and I were never taken to one side and told what was to come and how it would ravage our mum. The ward staff were lovely though and bent over backwards to make sure she was comfortable over the coming days. Yesterday palliative care nurses told us mum had a few days left as she was not showing all the signs of end of life. But last night I got a call to say she had gone. The nurse said she had wanted to go on her terms not the Acute myeloid leukaemia (AML)’s.

Seeing my vibrant active mum become a shell who didn’t know who we were has broken me. I have first hand experience of how lonely and daunting it is for relatives. I can’t stop this disease, I just wish there was something I could do to support loved ones.

5 Likes

@DanielleH To have posted such a strong and clear post whilst in a place of rawness shows deep courage and love for the mum you have just lost.
The honesty of your post will in time, be found by others coming to this forum and provide them with a support they didn’t realise they were looking for.
Your mum did something wonderful with her life, she helped raised a daughter who within 24 hours, could write a chapter of her mum’s life, look to help others and let the world know her love for her mum.
I am sure in time the @BloodCancerUK-SupportTeam would love to offer their support and maybe discuss ways you could help support others going through similar situations.
Cancer is one of Nature’s great levellers, with no regard for race or gender, we are are just one to it, perhaps in that, it is wiser than many within the human race.
When and if you are ready, perhaps next year, do the Walk of Light with family and friends to honour and remember your Mum’s life and her dance with cancer, cry a little, but more importantly, laugh a lot about her life.
Take your time to come an agreement with the universe about losing her and you will always find someone on here who can empathise, share tales and sometimes just listen to your posts.
Take care of yourself

2 Likes

Gosh @DanielleH I am so glad that you have found us at your time of loss and posted and I feel honoured and humbled to read your touching post.
Your love and caring for your mum really shines through.
Yes, you have been on a rollercoaster of emotions of hope and then to have it cruelly dashed, I am so glad that your mothers care was so good though
I am so sorry for your loss, life is not fair and blood cancers can be so cruel.
Just give yourself time and you and your sister might grieve in different ways, there is no right or wrong.
How giving and caring are you to want to help others at a time like this, but just give yourself some time and space first and perhaps be as kind to yourself as you would like to be to others.
We are here for you and so is the Blood Cancer UK support line currently weekdays on 0808 2080 888.
Be ever so kind to yourselves, you and your sister must be emotionally drained and I am so glad that you felt able to post on here. Please do keep posting and thank you again.

2 Likes

Thank you both so much for your lovely messages it really does mean a lot.

I am glad that I have found this forum, I think that maybe my mum has sent me here.

We lost our dad less than three years ago so I am no stranger to grief. Although he had a stroke, losing him was sudden. With mum we knew for a month we were going to lose her. Some might say that knowing you have time is wonderful as you get to do special things together. We did get to take mum to a place she loved to have fish and chips and took her around the grounds of the hospital. But my sister and I wish she could have just had a heart attack as right now I feel that it wasn’t worth that time for her to have to go through what she did at the end. She must have been so scared and I can’t imagine what she felt. I am convinced that she had bleeding on the brain as she showed the same facial and speech symptoms our dad had.

I really want to do something to help. I was thinking before mum passed that I need something good to come from her horrific end of life journey. My experience has made me realise that there is little support and care on offer for the relatives of patients in the hospital setting. My sister and I were lucky that our employer allowed us to take mum’s final month off work. We went up to the hospital everyday and spent hours with her. When she declined we would sit together and do crosswords and play games. To the staff we looked happy but we were struggling.

What I feel hospitals need are teams of volunteers consisting of people who have or have lost a loved one with a terminal illness. We can focus on relatives, offering an ear to listen, making sure they are eating and drinking, sitting with those who are alone, play games, taking them for a walk so that they get some respite. Just whatever is needed to ensure that they do not feel lost or alone. Even having someone to say that it is normal for your house to be a tip and your garden a jungle, resorting to wearing Christmas underwear is ok because you only have time to wash and iron your loved ones things. It wasn’t until our mum reached her final days that we started to get asked if we were ok. We would get the “if there is anything you need let us know.” Hard to answer when we didn’t know what was on offer. There is a Maggie’s Centre in the grounds of the hospital that treated mum. My sister and I are going to approach them with our idea when we feel ready.

In the meantime I am on this forum for anyone who needs me and I will be in touch for support.

3 Likes

Hi @DanielleH.
Thank you so much for posting and sharing with us. It must me such a difficult time for you all, especially as things are so raw.
It’s sounds like your mum was an amazing lady and had a wonderful family around her.
I am so sorry that she went through so much. It must have been so difficult for you all to see.
I am sure your post will help so many people and others on here will hopefully be able to support you as well.
Please take good care of yourself. We are all here if you need us.
Thank you again for such an open and honest post.
Sending lots and lots of love to you and your family X

2 Likes