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.
@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
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.
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.
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
I don’t have it in me now to repeat today, but please have a look on my page for my last night post - my story.
After 16 month from diagnosis, seven rounds of chemo just yesterday I was told that today I have 90% blast. Ironically there are perfect sibling match stem sells ready for transplant, but I can not have them. The time is lost for that.
If I can still be here in 4-5 weeks from now there is a slot for me in the clinical trials. But looking at your mum’s journey 4-5 weeks is too long time.
Please accept my best wishes, enjoy every day of your precious life.
I am so very sorry to read your post. Like Erica has said, no two people are the same. My mum was 75 when her Acute myeloid leukaemia (AML) returned so it was aggressive and treatments don’t respond as well in the over 75s.
I would say rest as much as you can in the coming weeks, mum was told that moving about caused the Acute myeloid leukaemia (AML) to use all her energy. You are so much younger than my mum so you have fight in you to make it to the clinical trial. That is such and amazing thing to do, not only are you fighting for yourself but you are fighting to help future patients with Acute myeloid leukaemia (AML).
I have not been on here for a while. Before Christmas last year my sister started to show a bit of what we thought was a bloated tummy. Mum had become unwell by then and in January her white cell count hadn’t recovered after her chemo in December. This went on until March when mum was told the Acute myeloid leukaemia (AML) had returned. My sister held off going to the dr as she didn’t want mum to worry. After we lost mum my sister went to the dr and after tests was told she had a massive ovarian cyst. The surgeon said it didn’t look cancerous on scans or when he removed it. We felt such relief but then on Wednesday of this week he phoned to say that cancer cells had been found in the fluid and lining in the cyst. She is 34 and waiting to get a full hysterectomy. I am now scared of losing my sister, she is my best friend and the only family I have left.
Please keep in touch, I am here to support you on your journey, don’t give up. If I could see Acute myeloid leukaemia (AML) in its physical form I would punch it and stamp on it for what it put my mum and us through. You get to the clinical trial and kick its butt.
Oh @DanielleH really good to hear from you again.
So sorry to hear about your sister and what you are both going through.
It must seem never ending loss for you.
Please do tell your sister I will be thinking of her.
Perhaps remember your very wise words that no two people are you the same.
Also be ever so kind to yourself @DanielleH you have been caring for such a long time and perhaps not had time to process things and recharge your batteries and now you are caring for your sister.
Look after yourselves and please do keep posting how you both are, we are here for you xxxx
Hello @Erica with the worry of my sister the last couple of months I have put the grief on a back burner I think. I am angry at life if I am honest. We had the worry for over a month that my sister might have cancer but then we got told there was no sign of cancer. So last week I was on holiday and I spent the time with my sister relaxing, then this week it all comes crashing down. I’m scared of losing my sister and now with my parents and sister having cancer I feel I have an axe over my head.
Oh @DanielleH you describe your thoughts and feelings so well.
Can you talk through your thoughts and feelings with your sister, perhaps she has similar thoughts and feelings .
We really are here for you and thinking about you loads xx
My sister doesn’t want to talk about it much, she wants to focus on the treatment and getting well. She’s not long talked a bit about but then changed the subject. I feel that the focus needs to be on her, I don’t want to offload on her how I’m feeling. Thank you for being here, it means a lot xx
So good to hear from you.
Your story touched me to the depths of my soul.
I was quite a frequent reader of these chats, but with your help it felt right to start talking at last.
My prayers today go to your sister, I hope her surgery will be a success and you will have each other for many many years to come.
Next week I have a couple of blood appointments and more importantly I will have a face to face meeting with the clinical trials consultant. He studied my case already and opened his invitation to meet. It is a turnaround I hold big hopes for, well my last hope, it is.
I am all ready for “butt Kicking” and certainly will update you on the progress.
I’m so glad that I have been able to help you come forward for support from this forum. I now know that I have been able to help someone through the loss of my mum. She would be glad that she has been able to help others in a similar position to her.
Although the percentage of your blasts are the same as mum you still have a chance. A doctor would not put you forward for a trial if they didn’t think there was a chance and that you were out of time. Hold on to that hope and carry it with you.
I’m always here for a chat, although I have a lot going on with my sister, helping others gives me a purpose. After losing both my parents I’ve been left not knowing what my purpose is anymore.
Hi @DanielleH I have realised we all deal with things differently, there is no right or wrong.
My husband is a head in the sand type of person and has never talked about my Chronic lymphocytic leukaemia (CLL).
This is the one place that I can really say how it is honestly, please do offload here.
Be ever so kind to yourself.
@Erica I know from mum how hard it must be for your husband. It’s too scary to talk to your loved one about their cancer because it means acknowledging it is real and it is happening. I am so glad that you are able to come in here to talk about everything as well as supporting others.
Thank you for your words to me today, it has come at a time I really needed it. I know that my sister is ok now but I have the fear, like with mum that it could come back in the future. I cannot bare the thought of that and it has been plaguing me since my sister told me the news.
I realised when my sister was told her issue was a large cyst that I have OCD. I haven’t seen a doctor but I know from looking online that I do. When health issues have come about with mum, dad and now my sister I have spent hours researching online. With people with OCD it is due to the fact that they need reassurance that everything will be ok, that is what I have been looking for. The other issue I face is that my sister works with me. It was hard going back to work as those we work closely with wanted to know how she was and even the gossips had found out she had an operation and were fishing to find out why. When I thought she was cancer free I didn’t mind, now with this news I cannot face the constant questions.
The last five years have been hard and I am wondering when life is forging to give us a break. Thank you again for your kind words, it really does mean a lot
Oh @DanielleH I reckon you are doing brilliantly
I think people will ask you because it is easier for them than asking your sister, perhaps keep it brief and move on.
Be very kind to yourself you have been through so much
Thank you so much. My sister told me today she needs everyone to be strong for her, which I feel is going to take what strength I have left. There is a Maggie’s near me so when my sister is out I will pop along and see what support they can offer me.
Oh @DanielleH Maggie’s sounds a wonderful idea to me, please do let us know how you get on and keep being kind and looking after yourself to build your batteries back up. xx