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.

[AndNoneForGretchenWieners]

I can only answer from my own experience of DH being given a terminal diagnosis. We are taking each day one at a time, planning for the worst and hoping for the best. It sounds cliched but we are trying to live for the moment as much as we can. He is also having all the treatment, as he wants to live as long as he can with a reasonable quality of life.

it's so shit, isn't it?

[PinkAvocado]

Thank you. It is shit. Sorry you’re facing it with DH

Mum is having low level chemo to help with energy levels to improve her quality of life but they won’t get her anymore time. She’s young still and hasn’t even got to retirement age.

It’s just awful.

[Damnpeskykids]

I'm so sorry about your Mum Cancer is just fucking cruel & horrible. From my experience we found out Mum had stage 4 Lung Cancer in May 2015, she was given 6-9 months initially (she fought for 15 months) she contracted pneumonia 2 weeks after her diagnosis & we nearly lost her but she fought hard & was discharged 3 weeks later. She had 1 cycle of chemo & a few of palliative radiotherapy and honestly, for the most part you would have never known she was ill let alone terminally so. Mum's biggest fear was dying in a hospital & was adamant she wanted to be at home when the time came - she didn't want us to see her in pain & she was very pragmatic about things - DNRs, funeral, attendees etc (which had me reaching for the & sobbing most of the time!) she lived in Northern Ireland & us over here so every month I'd go over for 5 days to spend as much time with her as possible. We were lucky she had an amazing Macmillan nurse who was so supportive & would answer any questions we had, have they been in touch?
I think because she never complained & hid her pain so well we kind of got a false sense of she might pull through it.
I cried most days -you can't imagine not seeing/speaking to that person when you're sat watching big brother over a cup of tea laughing away! I'm rambling now (have come back to finish this several times) sorry!
Mum passed away in August 2016, I'm so thankful I was there she'd not been feeling great the days running up & in hindsight the signs were there weeks before, but she passed in the night no pain as she wanted. I can only say spend as much as time as you can together, ask all the questions & talk about all the things you want to, I have no regrets in the sense that everything I wanted to say or talk about we had, obviously just wish we'd had more time.
It's a constant rollercoaster of emotions, you have to carry on day to day but you have this massive weight with you constantly. Do you have a good support network? I found being able to talk with friends who knew what I was going through a massive help. Follow your mums lead too, how she wants to go about things etc. Thinking of you all (sorry about my rambling! )

[PinkAvocado]

Thank you so much for sharing that.

It’s so new that I don’t think she knows how to begin to deal with it all. Which is understandable. She has some big logistical decisions to make re housing and finances that she has to do fairly quickly (separate but highly affected by this) and she admitted today that she feels it’s all a bit surreal.

My husband is great but he tries to find positives when sometimes I’d rather he would not. He said ‘at least it isn’t months’ yesterday when I talked about it which is of course true but isn’t actually helpful and feels like he is minimising when I know he just feels like he’s helping. It’s much better when people say, ‘that’s shit’ or ‘how awful’.

I’ll definitely be spending lots of time with her, we do anyway but I’ll make sure it is more. I can’t stop thinking about all the stuff she is going to miss seeing and knowing she must be thinking that too. It’s utterly horrid.

[Kittykat93]

So sorry to hear you're in this position. I've had this twice before. Both parents were diagnosed with terminal cancer and sadly passed away within a few months of eachother. I am in my early twenties and this happened a couple of years ago so obviously very difficult to deal with. If I'm honest when we got told there was a few months left I was in denial both times. I refused to discuss or acknowledge it. I wish I had of done now as there's many things I didn't do/say and now I'll never be able to.

If I'm honest I'm still struggling with my grief everyday and it hasn't got easier. That probably isn't what you want to hear but for me it's true.

Just cherish the times you have and make sure you make the most of the time left.

Don't worry about practical things until you need to, there are plenty of support systems out there that helped me with that side of things. Finance, probate, funerals etc.

Best wishes to you and your family

[BonApp]

My dad was given a 6 month prognosis nearly 6 months ago. No treatment.

Somehow this has just become a part of our lives, reluctantly a new normal. It’s shit, and heartbreaking and hard and sad and horrible. I’ve found “hope” a very pointless and useless concept, but “grateful” gets me through. I feel so grateful to have this time with dad, so that we can make sure we say everything we need to and make him feel loved.

Somehow you learn to live with it. The rawness will fade, though honestly I think this sadness has changed me forever. Sounds a bit dramatic but it has made me think differently about people and life.

Wishing you love and courage pink, though somehow you’ll get and give both when you need them

[PinkAvocado]

Again thank you all so much for sharing your experiences. I’m so sad anyone goes through this. I know so many get cancer but it hasn’t really affected my family until now. Well it has but not anyone so close or so young. I can’t imagine this happening to both parents-that must have been and continue to be utterly terrible.

I know this will change me forever and there is no way it cannot. Aside from the raw hurt, it’s really made me realise awful things can happen and nothing should be thought of as a given.

How do you cope with and enjoy special days without spending the whole day getting upset about how it’s likely to be the last one?

[MrsMozart]

Yes there will be days when you don't cry.

There'll be days when you laugh and drink tea and watch films and go for walks and just live your lives.

There'll be days when you get grumpy with your mum just as would normally happen, then you'll feel shit, but I found walking on eggshells made it all so much worse. Hold hands and talk and listen and just be.

A handhold from me.

[womanversusfood]

So very sorry to hear this. Nothing can prepare you for such awful news.

We were given a similar prognosis (1 to 2 years) with my Mum in 2015.

I sincerely hope that your Mum has a lot of periods of feeling relatively ok, as my Mum did. If this is the case, try and make the most of these. My main advice would be spend as much time as you can together.
In between chemo we took a couple of holidays with her, meals out, shopping etc. Normal, nice things which took all our mind off things and have left some lovely memories.
Seize the moment; when you are both feeling a little stronger book that spa day, go to the theatre, enjoy the time you have with her.

With my Mum, it was important that she wasn't defined by the illness. She still wanted to watch crap TV with us, read trashy mags , have a good gossip, hear what the kids were up to.
Obviously, you'll take your lead from how your Mum reacts but I suspect she will still want to carry on her role as 'Mum' to you as much as she can. Let her make you that meal (if she feels up to it). These are the things that will make her feel relatively normal.

It's not easy. This will have knocked you and the family for six. Take each day as it comes and get help where you can: let work know (they may be able to provide flexi working arrangements? compassionate leave if needed)
Speak to your GP; I needed a little (chemical!) help to get me through this time. Although not for everyone, it helped me stay on an even keel for a few months.
Confide in your husband and friends. Emotions will be all over the place, anger, disbelief, grief. This is normal and don't feel you have to put a brave face on all the time.

xx

[PinkAvocado]

Really appreciate you taking time to reply. I should be starting maternity leave (all being well) in a month or so and that’ll give me more flexibility.

I think making sure we do the fun stuff, not walking on egg shells and ensuring she is still in her role as my mum will be good to remember. I’m really worried that every happy event will end up with me just thinking, ‘that’s probably the last time’.

[NoSquirrels]

I’m really worried that every happy event will end up with me just thinking, ‘that’s probably the last time’.

I can’t say this isn’t true. But equally true there is an enormous sense of being thankful and relieved you had “this” last experience etc - every Christmas/Mother’s Day/Birthday/holiday since my Mum was diagnosed we have been blessed because you never know if it will be the last one. And of course that’s true for everyone anyway - it’s the ever-present knowledge which is difficult. So far for us it hasn’t been “the” last time yet, despite some worrying times. Planning is hard - it’s hard to try to make meaningful experiences when you’re not sure if those plans will work out, but you learn to just roll with it.

for you. If you’re heavily pregnant too it must be very very emotional.

[womanversusfood]

You may want to try and seek support from another source..sorry if this is something you've done already..
I found Macmillan had some lovely people on the end of the phone.
Perhaps your employer offers a counselling service?...Or even speaking to your GP about any local counselling options.

This won't be the thing that makes it go away but it might help knowing you can offload now and again.

Happy to hear you have a little one on the way but agree with OP, this will no doubt heighten your emotions ....

Take care but do keep posting here if you need to chat (from the comfort of your sofa/bed!)

[PinkAvocado]

It may be the hormones or just the whole situation but I’m really touched by your kindness. It’s helpful to have what I’m feeling put into words I hadn’t managed to-like the ‘ever-present knowledge’. It sounds so trite but I really love her and hate that she is having to deal with this.

I hadn’t realised I could contact Macmillan and I’ll definitely look into that. Thank you

[Titsywoo]

Yes definitely contact Macmillan. I volunteer for an organisation that gives emotional and practical support to those with life threatening conditions. I had to do quite a lot of training regarding active listening so I do understand why you say it's hard when your husband is trying to be positive/make you feel better when actually what you need is someone to just listen to your feelings and fears. But often in this situation you will need to find an impartial ear as those close to you often can't be that through no fault of their own.

[PinkAvocado]

Thank you I’ll call them. I really do know he is trying to do what he feels is right. I’ve tried explaining in the past how it doesn’t help but I can tell he is then offended so I haven’t said anything this time.

An impartial ear is probably best. I have an amazing cousin who is as close as a sister and we know each other’s way of thinking so she has been great.

[ChelseaDagg3r]

People are not statistics so try and keep that in mind

My dad was given 2 years to live. An aggressive kidney cancer. Tumours in his lungs and other places. Hes still here, on holiday at the moment in Cornwall , and we are 8 years past those 2 years

My mum .. ovarian cancer, spread. Still here, 9 years later

I don't like to talk about this stuff as it upsets me a lot so I will have to now hide the thread as I find it so triggering but I wanted to jump in and say please don't despair just yet ok?

People are not statistics

X x

[PinkAvocado]

Sorry to hear both of your parents have been affected.

Sadly with Mum’s particular form of leukaemia there isn’t really much wriggle room. The prognosis for expectancy is calculated on an individual basis using blood data and personal health info. For some, they go downhill even quicker than the time expected which I’m trying to block in my mind entirely.

[BonApp]

Posting on here has been a godsend for me tbh. I’m a talker usually but I’ve struggled to talk about this as there’s nothing anyone can say back to make it better it help. The people I’ve been able to talk to most are those who have sadly been through similar.

Re the “lasts”, we just had Xmas, ny and a big milestone birthday for my dad, knowing it will be his last. Emotionally it was exhausting and we all feel glad there are no more big occasions coming up. But those times have been very very special too and not morbid or morose but happy.

My dad isn’t the bucket list type. He’s just wanted things to be as normal as possible. Each new stage of his illness brings a kind of transition which we all struggle with, then it plateaus for a bit and we catch up. We know that won’t last and that it will speed up and take over st some point and I think my dad has found it hard to accept that it’s making him different from us but for the most part we plod on. We laugh, cry and talk a lot together, which helps.

My relationship with dh is suffering a bit. I live abroad so am making frequent trips back to the uk to see my dad, plus have s busy full time job (very supportive boss), so I feel rather stretched, and take it out on dh, and feel that my role of wife is way down on the priority list after mother daughter sister employee. But I’m hoping things will get back to a more even keel over time.

Anyway sorry for the indulgent waffle. I guess I’m just trying to explain some of how I’ve felt. I have a thread on here going since my dad was being diagnosed last summer, and it’s been a wonderful place of support.

Is this your first baby op? I’m sure he/she will provide a happy and joyful focus for you all at this difficult time.

[PinkAvocado]

I’m pleased to see that even when you’re feeling sad you can feel happy. Sorry about your Dad, if must be really hard being so far from him.

This is my second baby. My mum dotes on my son and they have an amazing relationship.

I’ve realised nights are hardest.

[Damnpeskykids]

Ah yes my DH was the same, he didn't know what to say & when I'd be upset and he'd ask what was wrong his head got taken off a few times! But I know he struggled too as they were very close and she adored him. We had been engaged a couple of years before mums diagnosis & after the first scare I didn't want to wait it was so important for me she was part of our day so we booked a Wowcher deal to Gretna, literally a few close family members & it was perfect!
I found that really hard too, what she wouldn't be around for - seeing my DS start school, my DD was born the night we found out she had cancer so was too young to remember her but I literally had my phone snapping pics & videos of them together so she knows who she is, she was "talking" to her on the phone yesterday! I found nights the hardest too, would wake for a wee then be up for hours it was like a weird parallel universe for a long time.
It's great you've got your cousin aswell, I would have been lost without my friend still would be! The Macmillan website was great I forgot to add, lots of forums for specific cancers, supporting family & friends, honestly loads & the people there know what you're going through, what to expect etc I found that helpful & so supportive, amazing how strangers on the internet can do that!
I've read threads on MN without posting & found support do keep coming back for handholds, chat etc!

[PinkAvocado]

I’m so glad I posted

[MyGuideJools]

pink my heart goes out to you, I've been through it with my dad and cancer.
He was told it was terminal but not given a 'time scale'
I was thinking we had a couple more years with dad but sadly he only lasted a couple of months. He contracted pneumonia and was in and out of hospital where he finally died.
On the build-up to the end, I spent every day with dad, took him food, took him out in a wheelchair, washed his hair etc. I was off work for about 6 weeks and work were brilliant.
What I guess I'm saying is spend as much time with your mum as you want/can.
I am so glad I did. it was so exhausting and family life took a back seat, but I wouldn't have had it any other way. I cherish those last moments with dad.
⚘for you

[PinkAvocado]

Thank you. I’m glad I’ll have maternity leave for the coming year. After chatting today, she has come round to the idea of going on holiday with a friend which she’d never have spent money on usually. I hope she enjoys every single minute.

[Knitjob]

I think there is some kind of weird instinct that drives us to look for normal eventually, even in situations that are majorly stressful. Does that make sense? You can't live in a state of high anxiety for a long time. Eventually living with the knowledge you have becomes your new normal and sometimes days can go by without you thinking every thing might be the last. It's sort of a survival instinct if that's not a stupid thing to say in such a situation.
My aunt (like a mum, raised me for years when my own mum couldn't) has a terminal illness and for the first few months I cried every time I thought about her and nearly every time I said goodbye. But you can't go on like that. I still get emotional sometimes and the feelings are overwhelming but somehow you plough on and find your normal again and find good times again.
She stopped having active treatment 2 years ago and is still doing mostly ok. Not good, but ok.
Some days are still utterly shit though. It's a rollercoaster. I'm sorry you're on it too.

[Drizz]

Sorry to read this pink. My dad got a terminal diagnosis in November 2016, initially given 2-3 months. Thanks to chemo he lasted til last January. I am also on Mat leave now, which is a weird mixed blessing, as my impulse is still to go and spend time at the "parents" as his passing is so new I haven't quite processed it.

The year has passed in a flash and at the same time it was incredibly intense and packed full of experiences and moments I'll never forget. It made me prioritise my parents in a way I hadn't done for a while (I am expecting my 3rd baby any day now and the elder two are 1,5 and 3,5 so life has been very busy).

Re: the grief. I found when dad passed that actually a lot of a grieving had happened when we got the devastating diagnosis. I can honestly say I was totally shell-shocked and unable to function for the first few months after his diagnosis. Now I am desperately sad, and I hate that he won't hold and bless our youngest child when he comes. But he was so ill and it was so hard that it was time for him to go.

In the past year we prioritised my parents, I popped over for coffees, lunch, with the kids, without them, we spent weekends with them at the seaside. I visited him in hospital. We celebrated everything we could. We actually had two last Christmases, as he wasn't expected to make it to his final one. We made sure we'd said everything that needed to be said, which mostly was I love you, I've learned so much from you/am so proud of you, I am intensely grateful to be your daughter/dad in the first weeks after the diagnosis. I also told my dad in confidence that we'd really like a third baby, and he knew this little person was well on his way when he passed (which devastated him, to miss the birth).

It is also important I'd say to maintain your health and relationship. Spend time with your husband. Teach him to support you. Have a day off cancer now and again. Look after yourself. You are going through a lot and you are very important too.