Mum diagnosed with Acute myeloid leukaemia (AML) in October 2023. Said with Chemo she could have 3 years.
December bone marrow biopsy showed the worst mutation and as she had sepsis they said have a good christmas, it maybe months.
She continued with management chemo and only recently has had sepsis again.
So consultant has said no more chemo.
Management transfusions as and when but how long will that last?
3 months has now been 6 months but shes sleeping all the time but literslly has just come home from hospital with Sepsis.
I feel like I’m on an emotional roller coaster and I want to get off.
She is pushing us away, won’t entertain carers and expects us to carry on with our lives when we are devastated.
The not knowing how long left is hard.
Feel lucky weve had 6 months but I dont know whether to be off work and spend more quality time but if I work I cant concentrate and I’m thinking about her all the time x
Oh @Jenster78 welcome and I really appreciate you taking the time to post.
It cannot have been easy when you are going through such a really difficult time.
Your love and caring for your mum really comes from your post.
You really have been and are on an emotional and practical rollercoaster and no, you are unable to get off it.
Perhaps you might see your GP and explain your dilemma and the concentration issues you have.
It is just an incredibly difficult time for you.
I have found our forum is the one place I can say how it really is for me. Please do use this space.
The Blood Cancer UK support line is also there for you on 0808 2080 888.
Please just do keep posting and look after yourself as well as you are looking after your mum
Hi @Jenster78 and welcome to the forum.
Gosh - it must be such a difficult time for you and your family. Not knowing is just so hard and unfortunately is such a big part of our journey with blood cancer.
It must be very hard to decide what you want to do, balancing caring from your mum and work responsibilities.
Is their somebody on your mums team you can talk to ask all of your question? @Erica has given you the support line number and I think it may be really useful for you to give them a call and talk things through.
Have you spoken to your employees to talk through your options?
It is clear how important your mum is to you and how much she is loved and it must be so hard for you all to see her so poorly.
Please keep posting as it really helps to say it as it is for you and there is always someone here to listen.
Please, when you feel up to it, keep us updated on how things are.
Take good care of yourself. Your emotions must be up and down and it’s important to look after yourself as well X
Thank you. I rang the number and spoke to a lovely nurse called Gemma.
She was very helpful.
I think we are already greiving which makes it hard to do any normal stuff.
The unexpected is the hardest part especially when we are trying to be so positive for Mum
Hi @Jenster78.
I’m really glad you called. I know Gemma would have been a great person to talk to and I’m glad it helped.
I know nothing can make the situation any easier but just having somebody at the end of the line can be so useful, especially when you are being so positive for you’re mum. I can only imagine how difficult it is for you.
Sending lots of love you’re way, and please, keep us updated on how you are doing X
Mum was advised not to have chemo this time round by her consultant but she was told if anything she could try a lower dose which she did. We didn’t want her to because of the risk of infections but she felt she couldnt not try.
We’ve spent 2 weeks in hospital by her side instead of happy times with her being well.
This was always about quality of life. I just hope she gets the quality time now.
I want to be with her but I know I need my job for my future.
Still not sure how to balance this but Gemma and yourselves have made me realise these feelings are normal x
Oh @Jenster78 what a dilemma you have balancing really wanting to spend time with your mum and your need for your job in the future.
Perhaps it is talking to your employer about your dilemma.
Yes, you are so right it is about your mum’s quality of life.
I am so glad that you spoke to Gemma, she is lovely, as I have found everyone on the support line to be.
All feelings are yours and nobody can take them away and I expect very natural and normal.
Please do keep posting and thinking about you loads xx
@Jenster78 hi, I only joined and posted on this page a few days ago.
I lost my mum to Acute myeloid leukaemia (AML) last Friday. She was diagnosed in 2019 and chemotherapy kept the disease in check until March this year when we were told it had come back due to a mutation. They tried a different treatment but sadly it didn’t work.
I’m feeling pretty numb today but on Saturday I was determined that I wanted to find a way to support others who have been or are going through the same as me. So, I hope that I am able to help you even just a little.
I know exactly how you are feeling. The not knowing what is going to happen and when is unbearable. It is so incredibly hard to balance work, keeping things ticking over at home whilst holding down a job. I am lucky that my employer offers company sick pay on full pay. I would highly recommend you speak to your employer to see if this is available. You would be able to self certificate for the first week then obtain a sick line from your GP for further time off. There is also the option that you could use some of your holiday entitlement. Either way see what can be done to allow you time off work to spend with your mum.
Please keep me posted on how things are going. You are not alone, there are experts here to help you and I’m here too.
Hi @DanielleH I think numbness is the body’s mechanism to protect the person from the overwhelmingness and rawness of the initial grieving pain.
So really look after and be ever so kind to yourself and I can see by your response above that you will be a brilliant supporter of others.
Don’t forget we are here for you as well.
Please do keep posting.
@Erica thank you so much for your kind message. I feel a little guilty at times for feeling numb, also a little scared that grief will catch up with me.
My parents were both born in the 40’s when people looked out for one another. My sister and I were brought up to never complain, make a fuss or ask for help. Family problems were dealt with within the home. However, our parents taught us to always look out for others and help in any way we can. I am who I am because of them and looking out for others keeps their memory alive. But I am really glad I have found this forum and that I must ask for help when I need it.
I’m in a very similar situation to you with my dad. He relapsed with Acute myeloid leukaemia (AML) last month with the FLT3 mutation. He started a treatment but this was very much about prolonging the inevitable rather than curing. I’ve been worried about his quality of life and in fact he’s been in A&E since last night with a high temperature and low platelets. Mum went with him but I didn’t this time as I’ve got a site meeting with our builders today and have to take the cat to the vet…all these things that carry on that you have to still do. I feel terribly guilty for letting them go on their own.
The waiting and the feeling in limbo is horrible. I can’t bare to thing about this dragging out for months. Watching dad suffer and watching mum have to see him go through it.
My parents were also born in the 40s so very similar age and attitude.
I don’t have a solution. I just wanted to say you’re not alone in not knowing how to deal with it all. But we will get through it. Humans are surprisingly resilient.
Hi @Ilona you are not alone either, and the practicalities of life do have to be juggled as well.
Please do keep updating us about you all and the cat.
Perhaps there are no solutions, but take care and be kind to yourselves, I expect you are all drained and exhausted, yes, humans are very resilient.
The Blood Cancer UK support line is also there for you on 0808 2080 888.
Please do keep posting, I am thinking of you all xxx
Mum was discharged on 31st May and in our opinion discharged too soon.
She went into a very low mood and we were worried so got the GP.
Turns out she still had sepsis and is back in hospital.
Consultant in A and E asked her resusitation status and gave us the impression she wont have long with only transfusions.
This scared us. We got family in.
Now haematology saying all bloods show shes still quite stable.
Shes needing 2 transfusions a week on average now rather than just 1 and getting sepsis again and back on intravenous antibiotics again is a nightmare.
Conflicting information makes us twitchy.
How long is she likely to have with just transfusions when so susceptible to infections x
Gosh @Jenster78 you have all gone through a lot, especially since the end of May.
Of course conflicting information makes you twitchy, I think that is very natural, we hang on every word and inference we think there is in what someone says.
If you have questions to ask your mums medical team, with her consent, don’t be afraid to ask them, I bet every question has be asked before by someone.
Really look after and be very kind to yourselves and please do keep posting
Gosh - it sounds like a really tough time. You’re calling family in one day and then told she is stable another. I bet you don’t know whether you sre coming or going and what to do next.
As @Erica said. Ask question to clarify things. Please keep us updated and look after yourself and each other X
As always thank you for your kind and reassuring words Erica.
Dad still in hospital but has been moved up to the oncology and haematology ward he is used to.
Turns out he’s got an infected PICC line. He’s been on general antibiotics which are keeping things down but is waiting for culture test results to be able to match exactly the ones he needa. He’s still struggling with concentration and gets confused. Apparently the other morning he went out into the ward and asked the staff why they were all in his house. One of those have to laugh or you’ll cry situations.
He’s having all kinds of CT, ECG and MRI scans too, to check all his organs. But I see that as a positive rather than a concern.
We are having a meeting with one of his team to discuss palliative and end of life wishes on Friday which I’m dreading. Not so much for myself, but dreading mum having to go through it and having to see her so sad. It’s all just a bit rubbish isn’t it? Love makes us hurt so much.
The cat is also waiting for blood test results! He’s actually just been walking a bit strangely so they think he might have a bit of arthritis, but wanted to check his kidneys too. No NHS for animals unfortunately so that was an expensive visit. It’s a good job he’s cute and we love him.
Hi @Ilona.
I can only imagine how difficult that meeting will be for you all. I expect you have lots of questions. I know you have felt in limbo and not known what to do for the best work wise and supporting your mum. I hope the meeting gives you some answers so you can decide on next steps.
Your mum is very lucky to have you by her side for support and remember, we are here for you.
Sending lots of special wishes X
Hi @Ilona yes, it is just a bit rubbish although that sounds rather an understatement.
I am not surprised that you are dreading Friday’s meeting, that sound very natural to me.
Yes, it must be horrible to see your mum so sad, I believe emotions are better out than stuffed down, It certainly did not do me any good to do so.
We are so lucky to have our NHS as your cat is testament to.
I have had so many tests lately, I cannot keep up with them.
Look after yourselves and please do let us know how the appointment goes.
I will be thinking of you all xxx
I was in the same position this time last month. The not knowing what is going to happen and when is unbearable. The thing with Acute myeloid leukaemia (AML) is that no two people experience it the same way. I am not medically trained either so, I cannot tell you how things will be for your dad. What I will say is that you must take care of yourself too. My mum said to my sister and I on a few occasions that it was alright for us as we weren’t going through it. I accept that we weren’t but we were going through it in a different way, coming to terms with the fact we were losing our mum and watching her go through it. Your mum is lucky to have you supporting her but please, allow yourself to go through it and seek support. I’m here if you need someone to talk to.
I have a cat too, he is our rock. He comforted us in 2019 when mum was diagnosed, when dad passed in 2021 and now when we navigate the loss of our mum. He keeps my sister and I check (we have the scratches to prove it!) but he also shows us so much affection. He cost me £70 last week for a repeat prescription consultation, I’ve told him he must get a paper round!! He said he can’t as he doesn’t have thumbs .We have to find ways to laugh don’t we?
As @Erica has said, let us know how the meeting goes on Friday and remember you don’t need to go through this alone.
Oh @DanielleH what a beautiful post and so, so true.
I think it is so important to keep a sense of humour and I would love to meet your cat and would let him borrow my thumbs so it can pay it’s way.
This certainly is a journey that we all go through in different, but similar, ways.
Who asks how the carer and family is?
It is so important that the carers and family takes care of themselves as well as they do the patient.
This forum means that you do not have to go through it alone and can be really honest how it is for you on here.
We are a forum family so please do keep posting.
.We have to find ways to laugh don’t we?