I had to give DM the worst news

[anotherNameJustForThis]

I’ve name changed for this as I feel it must be very outing. I’ve never known anyone to have done what I had to do the other day.

DM is 79 and has cancer. She had surgery a few weeks ago and when the surgeon spoke to us afterwards, she told us that she was unable to remove it all. She told us that she would know more after pathology results were back but that there was more diseased tissue than she’d expected which made her think this cancer was very aggressive.

DM is really ‘on the ball’ generally, however, is not taking a lot of this in so she asked me to deal with the doctor and gain all the information. The doc called me with pathology results. It is, as she suspected, a very aggressive cancer and she asked if I wanted to know the prognosis. DM hadn’t asked and she said that one part of her job was to understand what each person wanted to know. I told her I wanted her to tell me everything. She told me DM had “months, not a year”. It felt like a blow but I could almost pretend I hadn’t heard that because DM didn’t know and she and my step-dad were talking in very positive terms. The doc also reminded me that DM is currently asymptomatic so should do what she can to enjoy life while she can.

All week conversation with DM has been mainly about her cancer. How scared she is but hopeful that chemo would buy her a few years. She thought she could maybe have 5 years, etc. she kept asking me things that I (stupidly) thought I was successfully side-stepping without her noticing. Of course she bloody noticed!

On Friday night, she asked me outright, looked me in they eye and said, “my name, I know you’d tell me if you knew something that I didn’t.”
So I had to tell my mum that she is dying, that she didn’t even have a year left.
It sounds like a cliche but she recoiled as if I’d punched her. Then I had to tell her husband.

I just wish I hadn’t visited that day. We have an appointment at the hospital soon and I wish she’d waited till then. I feel awful for telling her but how could I not?

It actually felt like I had killed a little bit of her, her hope.

Maybe it’s an expected human response but immediately my step dad started reframing it:
⁃ How could the doctor possibly know this (pathology),
⁃ how can she predict a timescale (pathology plus experience of others with this type of cancer),
⁃ ‘John’ down the road was diagnosed with cancer 2 years ago and I saw him out running today (John is 40 and had an entirely different prognosis)
⁃ Etc etc.

The thing is, I believe the doctor. I don’t know why a seemingly healthy (asymptomatic) woman will die in a few month because she seems fine now, but I believe she will.

I think I am writing this for myself, not really for any answers. I don’t feel that I’m coping very well and don’t know what to do.

This 💯.
@Alcemeg Wise words.

2 younger kids who know gran is ill but nothing more
Reading your post I picked up on this bit.

I wanted to reassure you that children can be very matter-of-fact and deal with this in their own way as long as they feel people are being straight with them when it is appropriate. My OH was ill at home for a long time before he needed to go into a nursing home where he eventually died. Two little GC (around 4 and 6 when this all started) were very involved - they would visit and bob in and out of the room - they enjoyed letting me know when his catheter bag was full! - and were of course fascinated by it. They would go in and play in the room with him and come and tell me if he needed a drink etc. All just a part of life. When he was dying in the NH, they were with him when he lost consciousness and we were all there chatting etc. We did not spell out that he was dying, but they watched him fading and were very much a part of this - I think that is partly why they dealt with his death in such a matter-of-fact way. I remember the smallest crashing in through the front door and shouting "Mama, I am really sorry that Papa has died" and coming and giving me a hug. His openness was so refreshing when so many people were tiptoeing round me.

I do not think they were traumatised in any way by it all - they came to the wake, but not the funeral - but they knew he had been buried and they visit with flowers, painted stones and little gnomes that they make for him. They talk about him a lot and know that this is OK. They saw me and their Mum very sad and dealt with that too - no-one tried to hide how they felt. They do however often try and work out when I might die! ...... when I am 20 will you still be alive etc. !?

I just wanted to reassure you that children can deal with these things, and wish you well with the challenges ahead. You have done well so far and I commend you for dealing with this challenge with integrity.

But if not you, then who? You sound like a very loving daughter and you had to tell her if she asked. You couldn't lie to her.

I'm so sorry, OP. The denial is common. My MIL was diagnosed earlier this year and very gently the doctor told her, FIL, SIL & DH the expectancy could be weeks to a year, but likely on the shorter end. When she went into hospital with a complication a month later and started declining fast, it was obvious to me she wasn't coming home. FIL SIL & DH were still organising care etc. I tried warning D

*DH but he wouldn't hear it. She passed away within weeks.

Please forgive me if this has been mentioned, I haven’t read the whole thread as going through similar at the moment and am finding things hard to read . I cannot recommend Maggie’s cancer care highly enough. Look them up , there are centres all over the country. You can phone , or just walk in to any centre , they are warm , homely, welcoming places . They have a huge wealth of expertise and will welcome you , your Mum, step dad , anyone who needs support. It is useful to talk to someone outside your family . I let everything out to someone there , it helps me deal with things a bit better. You need to take care of yourself too .

@saraclara your posts are spot on.

I'm really shocked that the consultant did this. It isn't really about OP or her mum deciding who should know what; a doctor will be aware that if they disclose information like this to a relative, the relative then has the burden of knowing details of the patient's condition, that they may have to disclose, as OP did, without being able to provide all the accompanying details on treatment / support.

OP I'm so sorry for everything you & your mum are going through 💐

You did the right thing OP. However, I never wanted to know my DH's timescales as we both felt we would be looking at the clock waiting for it to happen

In addition I would ask what cancer it is? If your mum is currently reasonably well is she keen to have some treatment? Have you researched treatment and taken a second opinion if she wants one? There are many cancers where life extending treatment can help people live longer and in relatively good health for quite some time. At 79, if she's reasonably well overall I wouldn't be at all happy with only one opinion and not exploring treatment options. I should add there are plenty of treatments now with far less serious side effects than chemo, and often even chemo is managable if she wants to explore.

State of the NHS is that I do worry that in terms of costs patients aren't offered treatment where it might help. Certainly if your parents have private healthcare I would use it. If not, advocate for them to their doctors.

The first dr we was for my husband wouldn't offer treatment and told him to just go home. We took a second and third opinion and he lived several years on treatment, worked full time for 2 years just taking a daily pill and 3 days a week for another year didn't even try chemo until far down the line and even that worked well for a good while before he got really ill.

We weren't given a time frame, this is how we were told the bad news (32 years ago).

The chemotherapy hasn't worked, nature will take its course.

Mother thought this meant he would recover.

Sending you a big virtual highly unmumsnetty hug op. You did absolutely the right thing, also I imagine, the most horrible and difficult thing you’ve ever had to do. That was really brave of you. One thing in nursing I found was important was to always answer honestly, even when the answer wasn’t what the person wanted to hear. If your DM hadn’t wanted to know she wouldn’t have pushed for answers💐

Now she and her DH can plan. Plan for all the things they want to do while she feels well, and plan for how she would like care when she isn’t so well. She goes into her next appointment prepared and with relevant questions, rather than being sucker punched then and not getting any constructive care plan in place as she would be so busy reeling from the news.

So sorry you are all going through this, take care.

Thanks again to everyone for commenting.

I talked to a friend yesterday who has experience of this type of situation. She was surprised DM hadn't had contact with a specialist nurse or been signposted to support.

I assume that will come with the oncologist appointment which DM is STILL waiting for.

Although I don't blame the doc for leaving the news with me, I am disappointed that we now seem to have no support. DM had lots of questions that I simply can't answer.
I have chased up the doc's office but have not yet had any response. It's difficult.

The longer we wait, the more advanced her cancer gets. The original 5 weeks where her diseased tissue had grown dramatically is now approx 9 weeks. I can almost picture it eating away at her.

My DM actually died before her biopsy results came back. She had the biopsy done just before Xmas and died at New Years. Worst time to be gravely ill, apparently. Because she hadn't had that appointment, and it was Xmas, it was pretty much impossible to get any at home care. We ended up doing a lot of it ourselves.

I would contact the oncologist office and fight fight fight for answers and support. You don't want to be left flailing like we were.

I'm so sorry to hear that @jamoncrumpets

I am confident that I can advocate for her. I don't mind fighting to ensure she gets the best care she can. It's just such a sorry state for the NHS and, to your point, Christmas is on its way

My experience was that as soon as my mum was diagnosed we had to source support ourselves. I had to contact the home care team and public health nurse to sort medication, pressure cushion, commode and suitable matress. It was during covid so it was all over the phone and my family organised a rota so that someone was always there with mum and dad. It's very daunting when your still trying to get used to the diagnosis. I hope you are doing alright and that your mum is comfortable. If your mum decides to have treatment from home make sure you have contact details for everyone. Pain medications will change a lot so make sure the dosages are being upped apprpropritaely. Sending you the very best it's just so hard 💔

Thank you @glittereyelash I'll take that on board.

I've just found out she has an appointment with an oncologist early next week. I have a list of Qs as long as my arm!

DM is till asymptomatic and is, as I had mentioned, in denial a bit. I'm worried that this appointment will knock her. She'll be hearing this from an oncologist, not just her DD so it might seem more real.

Plus, I couldn't bear to tell DM that the surgeon had said "months, not a year" (which I understand from a nurse friend might be code for 'up to 6 months'). I told DM it could be less than a year. If the oncologist tells her it'll be a few months, or whatever (DM has already decided it will be more than a year), good knows what she'll do.

You have my sympathies OP, as much use as they are.

I didn't realise that not everyone was constantly ill following a cancer diagnosis, and that someone only went downhill a week or a few days before the end.

My MIL condition changed that thinking ..we almost let ourselves believe she defeated a terminal cancer, but obvioulsy this isn't possible unless it has misdiagnosed somehow. She was fine one month, then gone the next.

The sobering, upsetting reality also hits when an insurance company pays out on life insurance after seeing a medical report. They don't tend to give money away easily.

That's the thing @Fairydoors , she appears well, I can't imagine that she will become unwell soon, never mind die!

I'm so sorry that was you experience with your MIL

Thoughts are with you. Sadly I know how
difficult this is for you from my own experience. I was given my mother’s prognosis on my 30th birthday (4-6 months). I never told my mother. She remained upbeat and positive and I believe that did carry her through for the next almost five years, until she passed away. She suffered terribly and towards the end, I really just wish she would just slip away as she had no quality of life. I really feel for you and it’s so hard, it really is. For everyone. You and your family will be in my thoughts x

I'm holding hands for this thread x

I went with DM to the oncologist appointment. She now seems to truly understand the implications of what will happen.

They have offered chemo but said it would only buy her months. They also expressed concerns over whether she would be able to tolerate the chemo - the risks are life threatening (dvt, stroke, heart attack, sepsis).

If (big if) she can get through the chemo, she might have 18 months to live but if she can't, there is no other treatment so she'll have only a few months left.

It's devastating news and she's really not coping well with it. Mind you, who does? I feel so sad. Im middle aged but feel like a child right now. I don't want her to go.

I'm so sorry I don't think anything can prepare you. I was 33 and my child had just turned one when mam was diagnosed. I felt a million emotions and i was terrified of what life would be like without mam. It was and is extremely difficult but I coped better than I would have imagined. Just take it one day at a time and allow yourself to feel.. it can be fear, anger, disbelief, anguish, resentment and a million other things ❤️

@anotherNameJustForThis I’m so sorry for you, your Mum and family.

I'm so sorry to read this. It's so awful for you all and you must feel very scared.

I hope the hospital have put you in touch with a Macmillan nurse who will be able to answer more of you DM questions.

Thinking of you

you poor thing, I do feel you have been an amazing support to your mum and been left in quite a difficult position, I hope she does have a specialist nurse or a cancer support centre (we have a local one) who can support her during this time. I'm glad she has spoken with the consultant and so she realises what the medics are saying. you can also talk through the chemo, my husband had it and I wish he hasn't as it didn't give him hardly any more time than the average and it was so gruelling and awful it would have been better to have had a few months less but with less illness I think, but that's a very personal decision So hard for you, I don't have any consoling words except to say your mum is lucky to have you and please do reach out if you can to get support for yourself as well.

Thank you.

No nurse yet. I'm hoping this will come with chemo, which starts next week (hopefully Wednesday)