Mum is dying

[SomeonTookMyAnonymousUserName]

DM has terminal kidney cancer. Approx 6 months ago, we were told that she had "months, not a year" left to live.

As anyone would, she has really struggled with this and defaults to denial. I thought she would have come to terms or accepted this by now but she hasn't.

When she was diagnosed, she was asymptomatic which, I think, made denial very easy. She wasn't ill, or certainly didn't feel it, so the diagnosis didn't seem real.

At an appointment a few months ago, ina moment of acceptance, she was upset and asked the oncologist what would happen to her. The oncologist described the symptoms she'd start to experience.
She now has all the symptoms but won't accept they are cancer symptoms- she's blaming side effects of her treatment, which stopped 2 months ago, so it's definitely not that.

Her symptoms now are swollen legs, horrific nausea, weight loss and extreme fatigue.
When I google these, it says 'end stage kidney cancer'.

She is so strong and battles through being unwell, she always has.

I am not silly; I know we are running out of time, but how quickly?? Does she still have months left? Or would those symptoms indicate only weeks?

I'm losing my mum but can't talk to her about it as she thinks she'll beat it.

Does anyone have any experience? I know her death is coming but I'd like to have an idea of timeframe to get myself ready.

Poor lady. FIL went through something similar. Once he got to that stage he had about a month left. But everyone is different. Is she having any palliative care?

Thank you. Sorry to hear about your FIL.

She attends the hospice who are brilliant but there's not much else in terms of care. She attends the oncologist after every scan.

Next time I'm going to ask them about macmillan nurses to see if they can help

💔 so sorry you are going through this. Your poor mum, that's one heck of a truth to swallow. I think Macmillan will be a good idea, they have counselling options, so hopefully she can be as well supported in coping as is possible. I hope you find the help you need and some comfort for her.

I'm so sorry, this must be so difficult. Its good you have hospice care support - can they help facilitate conversations with your mum about where she is on her trajectory? When someone close to me was in a similar situation to your mum I reminded them how fabulous they were, how I knew they were fighting this but I needed them to share with me what they wanted if things were to get worse, as I didn't want to let them down - have you had these sorts of conversations?

It is horrible to feel someone you love so much slipping away - my thoughts are with you.

When my sister was dying of breast cancer she chose to deny it and not discuss it with anyone. Even though we went to visit her in NZ to say goodby, even though I took her to her last appointment with an oncologist, it was the Great Unspoken. It worked for her - she absolutely knew what was happening but this was her choice so we respected it.

My thoughts are with you op. Cancer is an awful disease.

Thanks for your reply.

No, we haven't had these conversations. A few months ago, she said that we'd need to talk about her funeral one day. I said I'll talk to her about it whenever she was ready, but she never mentioned it again.

It sounds simple - just talk to her about it, but it's not when she's behaving as though it's not happening. Someone above the it's the great unspoken. That's what it's like

Thank you everyone for sharing. I'm so sorry you all went through this. It is so much harder than I could have imagined.

In my experience the palliative care nurses will give you a frank assessment of how long she may have - if you ask for it. They know that many people don't want that information so won't just offer it. It's so hard. My thoughts are with you.

Hello OP, I’m so sorry you’re going through this. I lost both my parents to cancer over the past few years so have some idea of what you’re going through.

It’s natural to want clear timescales but it’s difficult for medical professionals to be completely exact, because things play out differently for different people.

When we went through it with my mum (second one to die) I stopped looking for timescales and began to think ‘not long’, rather than trying to put a timeframe on it.

But of course you can ask, and doctors and nurses will give you their best estimate if that helps fixes you some clarity.

My mum didn’t want to talk about it much either, to the point that my brother and I had a completely blank sheet of paper for her funeral - we didn’t even know if she wanted to be cremated or not.

I think if you’re dying, everything must feel very out of control. The person who’s experiencing it has to travel their own road and decide how they want to handle it.

I know it’s hard for you.

*helps you find some clarity

I'm sorry you and your family are going through this OP.

Could you perhaps suggest that she puts all her feelings in writing, maybe a diary or similar? Maybe she can think of and write things about her funeral for instance so that you will have it at a later date but she doesn't need to discuss it now.

I think I would feel similar to your mum.

They generally look at how quick someone is declining, so if it is over a matter of years then they would most likely have years, if things are changing monthly then months and weekly-weeks. The problem with cancer is that it unfortunately causes some acute things to happen (such as infection or bleeding) so things can sometimes happen at a different time scale to what you might expect or have been told.

I think the work with the hospice might be the best person to talk to for support. At this initial stage when things are less about symptom control they often spend a lot of time doing counselling and putting things in place (ie making a decision around where she would want to be as she approaches the end) for the next stage. They support leaving notes/memory boxes etc whatever she may want. Realistically she may never accept things, maybe she just wants to keep the hope but if things are changing and she's not really engaging it may be that someone else close may have to make some of the important decisions for her.

So sorry to hear this. I lost my mum a year ago today to kidney cancer. She was only diagnosed in January of last year and it had already spread to her spine and liver, so I suspect she may have been further along than your mum at point of diagnosis.

We had amazing support from the Marie Curie nurses, they came in overnight 3 times a week in the last few weeks so we could get some sleep.

My sister and I cared for Mum between us in the last month, but it was very gruelling and distressing. Please feel free to ask any questions that I might be able to answer for you.

Oh @maz210 I am so sorry to hear this. What a day for you to find, and have the kindness to comment on, my post. Thank you. I appreciate your offer and may take you up on it

Very sad for your mum and yourself.
When my partner was diagnosed, he was terminal , no time for treatment , he would not speak with doctors.
Any time we had contact with them , the doctor would give me the updates on his condition.Even then partner didn't want to know. Wouldn't go to hospital even though he was visibly becoming more ill.
On his last weekend , he had no option but ended up in hospital with severe infection. Doc , took me outside the room to tell me he had only hours left . Even then he didn't want to know the conversation .
Very sad , my heart was breaking , but I think he was just too scared of the reality of what was happening to him.
I just made sure he knew I loved him and held him all through the night.
My heart goes out to you , your mum and all your family x

@Zippitydoodaa I'm so sorry for your loss. You were so selfless.

I think perhaps I am being selfish: I want to have the important conversations with her, I want to talk about her funeral to make sure I know what she wants,

But it's not about what I want.

Sorry to read about this. When my parents were dying of cancer it was unclear how long they had right until the end. So, I don’t have an answer. However, each time I read With the End in Mind by Dr Kathryn Mannix. This book, and here newer one (called Listen) gave me a strange comfort.

I will have a look for this books thanks.

I know some people don't want to know, and it's their journey not mine. I'd just like to prepare. I feel it's going to come quicker than I expect and take me by surprise

I’m sorry to hear about your mum.
Friend’s cancer re-emerged, was told it was untreatable. He didn’t want to talk about what would happen, how long he had etc.. in fact when he was forced to face this and tell 2 siblings he went really downhill from that day.
Hospice staff will support you and answer questions you might have. And I think you can also contact McMillan for support.

My DH died in an accident but there were lots of women in my widows group whose husbands had died from cancer. I was surprised that so many said they’d never discussed ‘ the end’ with their spouse, even when they were in the care of a hospice, they took each minute at a time with the illness. Not walked in their shoes so I don’t judge or question that.

I would talk to the hospice about her, they should be able to give a good guesstimate of where she's at and approximate timeframes.

I had something similar with my Nan in February of this year, wasn't cancer but kidney failure. Again, like your mum there was little acceptance, but I think this was mostly because she was afraid. Unfortunately for our family, from our initial diagnosis we had two weeks before my nan passed away. My thoughts are with you, I can remember how horrific the nausea was.

I'm so sorry you are going through this. We went through similar with a close family member a year ago, although a different type of cancer. Does she have a will? In my case the person didn't make a will I think because that felt like admitting defeat, and it's caused no end of pain because of that. We had to wait almost a year for probate to be granted - it would have been so so much better and easier if he'd made a will in time. I had to organise his funeral without really knowing his wishes and that was also stressful, I felt numb. I had to conclude funerals are actually for the people left behind so I did everything I thought he would have wanted in terms of music etc, while knowing he'd have hated a funeral and thought it a waste of money. But I had lots of relatives pushing me to organise one so I gave in and I'm glad I did.
Having a will and knowing the persons wishes does help a LOT afterwards, but it can feel so hard to broach the topic if they are hard in denial. I think we aren't very good at death in this country, there is a lot of fear around it and no-one wants to talk about it even if they are clearly dying.

What I can see now, a year later, is that in my case, this relative needed to be in denial. He was very frightened and it was his way of staying sane. Pushing it all away and ignoring stuff was a coping mechanism and I'm glad I didn't try and take that from him. The evening he died, he was talking about perhaps popping home to do some work the following day if he felt a bit better after a sleep. Denial is the mind's way of protecting us, and that's also why we feel numb sometimes when dealing with a dying relative or a recent death.

All that said, I really feel your conflict and how hard it can be to see something happening in front of you but it's being denied - it doesn't give the space for pre-emptive grief, or meaningful last conversations. I wished I'd told him I loved him, not to worry about anything. I wish I'd known how little time we had. So all I would say is, if there is stuff you need to say, say it now while your mum is with it and able to hear, while respecting her need for denial as a comfort blanket. It's a hard line to walk, and I'm sending you a big hug.

It surprises me how many people approach death like my mum is. I honestly thought she was unusual. I suppose I'm lucky that I haven't experienced this before so I'm basing my assumptions on the movies!

Im so sorry to everyone who has experienced this or anything similar. Thanks for sharing

I'm so sorry you're going through this, it's such a tough journey to be on, losing a loved one to cancer.
I lost my dad to cancer in January. He was very much the same as your mum, in terms of not accepting things and being in denial. He had cancer for 3 years but in that time there was moments he got very sick and we were told he only had a very short time left, then he improved and he was here for longer. Through all of that we learnt that if he wanted to believe he will get better, we had to leave him think that, because having hope is what got him through the majority of that journey. At one point he started to accept it and he got very depressed. Then he went back to a level of denial and we decided as a family to go along with that. We never hid anything from him that the doctors told us when he asked, but we also stopped correcting him if he was saying things that weren't true, such as thinking the doctors had told him that the treatment would cure him. It was hard but at points on that journey it was the kindest thing to do for dad.
I think your mum knows the truth deep down and she's pushing it to the back of her mind because it's such a hard truth to accept.
All I can say in terms of time, no one really knows, so say all the things you need to say and have those conversations.
You mentioned that you wanted to talk about things such as funeral plans, it might be easier to find a way to drop questions into a normal conversation here and there, rather than sitting down and having a serious talk over that subject. That's what we did, it helped us get the info we needed throughout various chats, but without having to put it across in a difficult way and our dad ending up getting defensive and shutting down, which was his way if he didn't want to talk about things.
It can be overwhelming with so much to think about and plan ahead for. McMillan can offer great support to both patients and their families.
If your mum doesn't want to accept it, all you can do is support her and try gently guide her into also saying/doing all the things she needs to while she can, and just spend as much quality time together. That's all you can do really..
Sending love to you and your family xx