My Mum has been told she has 1-2 years left. How do we get through this?

[PinkAvocado]

Yesterday we were told my Mum 1-2 years left to live. She has a rare form of leukaemia that was only diagnosed in Autumn and there is little known about it aside from the survival rates and rough timeline. Until the diagnosis (which only happened through a blood test for something unrelated), she was seemingly well and working full time so this has come as a massive shock to her and us. We don’t really know how this will all progress now.

My question is, when given a news about how long someone has left and it’s not long, how do you actually cope day to day? Will this initial shock and heartbreak continue? Will there be days when we won’t be in tears at some point? I feel as though every week and day I’ll be mentally counting down and that’s not going to help anyone and I want to be as supportive as I can.

We are incredibly close and I don’t want to be spending her last year or so grieving as I know there’s going to be too much time for that.

Sorry to hear about your Mum Pink . My own Mum was given a terminal diagnosis this time last year and has far outlived the 3 months predicted. I live in a different area but have just taken a few weeks off work (employer luckily understanding) to spend some time with her. I can’t say it’s easy as she is suffering now and going through some very unpleasant treatments/symptoms. My Dad is also struggling with it all & the emotional roller coaster of it is exhausting. I am glad I’m spending time with them but find the switching back to “normal” life tricky. I am very aware that when I set off for home each week I can (sort of) escape it all for a few days but that they can’t - that’s heartbreaking.

Focus on today. Speak to the specialists so that you know what’s ahead and how you can best support her.

It’s really shot isn’t it? We is the same with dad and it was exhausting and draining.

Thanks everyone. She has gone into hospital tonight with a rupturing spleen which is linked to the cancer. They said a few months ago they wouldn’t remove it (when it was just enlarged) because it was too risky and the chances were she wouldn’t survive theatre. But now it’s rupturing they have no choice. I can’t get my head around that she could now die very soon.

Oh Pink. I am sending love and prayers.

Sending hugs and a handhold lass.

Pink I hope your Mum is doing ok today and the outlook is better than you’ve been led to expect.

Hi pink I hope your mum is doing ok?
We were given this diagnosis for my mum in June last year. I was in shock for the first 2 or 3 months, got really panicky at night and felt a massive sense of urgency.
But it’s a marathon rather than a sprint. You need to look after yourself, I burnt out in those first weeks. Mum has got worse over the last few months of course and maybe I’m in denial but I am coping better now.
Those ‘last’ things happen too often of course, Christmas birthdays etc. But it’s made us appreciate it all and try to enjoy it. Take your lead from her. Sending you lots of love, other people don’t understand, it’s so hard x

I’m so sorry you are going through this too.

I could have written many of the same things. We’ve known my mum is terminal since August but she now has a massive complication that is going to mean treatment stops. So this could be the beginning of the end.

Can’t really function. Am a crap mum right now.

Don’t know whether this sounds all wrong but although I feel horrified about losing my mum am almost more horrified about losing the Granny that my daughters adore.

I’m so sorry you’re going through this.

My mum was diagnosed with a terminal illness this week. She could have a year, she could have 5 years; no way of knowing at the moment. I’m struggling to know how to cope with making the most of what we have. What are the questions I want to ask? How can I make sure the kids have some more lasting and amazing memories of her before it’s too late? What are the things I need to do know while she is still mostly as physically normal as ever.

Nights are definitely the worst. And times alone.

I'm sorry to hear all of your stories. My dad had a terminal diagnosis 3 weeks ago and has been given 18 months. I'm not coping well, I'm scared for my Mum. I don't know what to say to my dad sometimes he seems like he is already gone.

He told me that he is living life now from a distance.. he is there and going through the motions but just not present, like an outsider.

It's truly awful and I don't know how to help, what to say or do. We were on holiday together just a couple of months ago. Life was normal. Sorry I'm rambling.

Take care everyone xx

Thank you so much for asking and sharing your experiences. Thankfully she didn’t die that weekend as the bleeding was not quite where they thought it was and her consultant was contacted on his day off which stopped the surgery going ahead. After a few days in hospital she was out again. It’s just so up and down. Last weekend she was in tears because she had so many painful hematomas and she just wants some time now with no new negative developments. She’s scared it’s all getting worse and she isn’t getting time to just be and live. It’s heartbreaking.

We have had a conversation about her funeral wishes now which was strangely comforting and I’m taking so many more photos of her just in our home with my son. I too feel equally if not more sad about her time as a grandmother being cut short because she is amazing and our son adores her.

Hi OP I'm sorry to hear about your mum. It is heartbreaking and sad to hear. She has a lovely family supporting her which will help her alot.

I had blood cancer with a diagnosis of two and a half years but then I was given a stem cell transplant early last year which put the cancer into remission. Did your mum's consultant mention a stem cell transplant at all?

When I had cancer, my mum kept saying to me she wished she could take it off me. I then got better and she then got diagnosed with terminal cancer. Is tearing me apart.

When J went into hospital for my transplant , my daughter put together a memory jar for me. It was simply a jar with a label Memory Jar written on it. Inside the jar were lots of pieces of paper filling it and on each piece of paper my daughter had wrote about a happy memory she had of time with me over the years and on other pieces of paper she wrote loving messages. Each day in hospital I took out one piece of paper to read and it really helped me and meant alot to me. It was such a lovely idea that made me smile, and cry aswell

Oh GirlsBlouse, you’ve really been through it. I think I’ll use that idea for any future hospital stays.

She has a form of leukaemia that won’t go into remission, especially now she is in her 60s so nothing they can do to prolong her life. It is CMML and it’s being aggressive.

So happy you’re in remission but sorry your Mum is not well and that it is terminal. It really is awful.

Thank you Pink. I'm doing ok now. I found it easier emotionally to deal with my own cancer than my mum's.

It must be tough for you. Am sorry to read that your mum's cancer is not treatable. There is a chat forum on the Macmillan website which you may find useful if you don't know about it. It is very supportive and gives lots of information. I hope your mum is as well as can be and not in any pain. God bless

Two weeks ago we were told my husband has 12-14 months he has giloma which is an aggressive brainstorm tumour. So days it's raw but mostly it's normal as we have two children where we have to act normal. It's actually this rawness to normality which is the hardest thing to deal with. Mentally it's draining.
We take some comfort in that prognosis may not be right and we are currently getting second opinions on treatment . Current suggested treatment seems like he will be wholed up in a hospital for most of the 12 months .

We also laugh like when just minutes after hearing the prognosis he ordered the biggest lunch ever - I couldn't eat for days. Another time when he saw a different doctor and he said 10months not 12. Not sure why we found this funny but it's all so surreal that at times it's like we are in a big joke.
Our lives have been turned upside down- at the most cruelest of times when we'd just brought a new house and we were settled in every way.
I have started to organise events for my husband. So we have a week away soon, organising something with his football club that he supports, trying to do a meet and greet with a boxer and hopefully a trip to Disneyland Paris. There's also a charity boxing match being organised for him.
We have lots of family support but at times we find that overwhelming. My house no longer seems
My own with lots of visitors. We are so used to it being the 4 of us . Also, we have found that in this situation everyone becomes an expert on it and there's pressure put on my husband to do this and that . I've had to tell my husband to he can take his time to make decisions and he is still in control.
It is hard op but the initial rawness does fade and you will be able to function and make some good memories.