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Relationships

Mumsnet has not checked the qualifications of anyone posting here. If you need help urgently or expert advice, please see our domestic violence webguide and/or relationships webguide. Many Mumsnetters experiencing domestic abuse have found this thread helpful: Listen up, everybody

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Original poster

Terminally ill friend

20 replies

Cleanbedsheets · 03/01/2024 11:43

Hi everyone

I am not sure what I want from this thread, I guess I just want to get stuff off my chest.

I have a 3.5 year old so don't want to show my upset in front of him.

My dear best friend of over 20 years was unexpectedly diagnosed with terminal pancreatic cancer with mets to liver and gallbladder. This was back in June and he was given 6 months prognosis.

I saw him about a month ago when he was in hospital and looked ok. He has not responded to messages since 30th November so I contacted his partner on 30th December as I was worried. She said that he is on "injections now" to just make him comfortable.

I asked if I could see him, but understood if not. She said no, that he was too out of it.

He has even sent his parents home.

I just feel so lost. I can not communicate with him, see him or tell him I love him.

Mutual friend now says he is on a syringe drive (this was NYE though, surely he would have passed by now). I don't want to keep messaging his partner as she must be having a hell of a time.

Anyone have any experience of end of life? Is he likely to be suffering :(

OP posts:

Charliecatpaws · 03/01/2024 11:50

Both of my parents died of cancer and both were on syringe drivers at the end and it was about 4 to 5 days before they passed. While on the driver it was like they were asleep, no communication or acknowledgement that we were there. It did give us time as a family to spend time with them and talk to them which gave us some comfort. I'm sorry that you are going through this.

RedRock41 · 03/01/2024 18:20

I’m so sorry about your friend and what you are going through. That is awful. Unfortunately once on a driver it can be hard to predict when someone might slip away. Lost a lot of loved ones and end of life and death for each was different but hoping too he is comfortable as he can be. You sound a good friend and considerate of you to not disturb his partner too much. You must feel so heartbroken and helpless in equal measure not least as they say grief is love with nowhere to go. There’s no easy way through but do what helps you cope or get by… be that getting extra rest or keeping busy. Going out or having a laugh or cry etc etc. whatever you feel or want to do or not do for now is more than ok. It’s not normal circumstances and it’s so hard when a
you have to carry round those you loved in your pocket… speak of him often after the time comes and also in among the sadness have a chuckle at the many good times you shared. It’s amazing how our lives would have been so much poorer without those who might have become framily. Thinking of you both. x

AnnaMagnani · 03/01/2024 18:25

It's very common for people not to want to see friends or even some of their family at the end.

They are so exhausted that even though you want to visit because of love, it is just too hard.

It becomes very personal with just a partner there most of the time.

I'd try to remember your friends personality and shared times.

saraclara · 03/01/2024 18:28

My late husband was on a syringe driver for maybe 5-7 days? It was a fairly peaceful time, and for the last two or three days he was basically in a coma. The nurses who visited him at home each day were able to read any discomfort in his body language or in other medical signs, and were absolutely on top of it, and reassuring us that he was comfortable.

To be honest we couldn't have dealt with any other visitors. My DDs and I were in a kind of parallel universe while we were caring for him at that stage. The district/Macmillan nurses and the carers were the only callers that we could manage

Janiie · 03/01/2024 18:29

I can't understand why she's sent his parents home. Even if he is now not responding family amd friends get a great deal of comfort sitting with loved ones in their last days. As others have said there isn't a set time, it can be hours days or weeks.

Still, it is obviously her decision not to allow those close to spend time with him and all you can do is wait to hear when he has sadly died .

MrsO3 · 03/01/2024 18:32

@Janiie OP’s friend who is dying has sent his parents home. Not his partner. He obviously doesn’t want people other than his partner with him during his last days

MrsO3 · 03/01/2024 18:36

@Cleanbedsheets goodness what an awfully sad situation. I’m so sorry for your friend and for you as well. Unfortunately it seems now all you can do is wait for news from his partner. Just take peace from the good times and happy memories you have with your friend. He obviously doesn’t want people to see him like this so try to take comfort in knowing his wishes are being met. Sorry again OP x

MrsO3 · 03/01/2024 18:36

AnnaMagnani · 03/01/2024 18:55

@MrsO3 the friend has sent his own parents home.

Honestly this isn't that rare, in the hospice we often have to subtly manage visitors as patients either don't want them there or only want them for very short visits.

However close you are, or good at sitting quietly, patients often feel they have to stay awake and 'host' and they just don't have the energy for this. They barely have the energy for their own emotions and trying to be with people who want to have last visits, or tell you how much you mean to them is all a bit much.

MrsO3 · 03/01/2024 18:59

@AnnaMagnani yes I’m fully aware the friend has sent his own parents home. That’s what I was trying to explain to @Janiie

Zanatdy · 03/01/2024 19:01

I’m so sorry. My friends mum has just passed from pancreatic cancer. Diagnosed in August, given 3-6 months. She was on a syringe driver for a good 6-8wks I think. I was lucky to pop in and see her at home soon after diagnosis as she didn’t take any visitors (friend said other friends and I who are no childhood friends with a good relationship with her mum) should just call in. She really did enjoy seeing us, and I was happy I got to see her then. I can understand why people don’t want visitors seeing them when they are so frail. Will she let you know when he passes?

Janiie · 03/01/2024 19:30

AnnaMagnani · 03/01/2024 18:55

@MrsO3 the friend has sent his own parents home.

Honestly this isn't that rare, in the hospice we often have to subtly manage visitors as patients either don't want them there or only want them for very short visits.

Once people are on syringe drivers they often do not have the choice to stay awake and host, they are usually unrousable.

Fine this man sent his parents aways himself but what a sad thing to do. If one of my dc were dying there is not a chance I'd want to be apart from them to await news of their death.

I don't agree with just anyone pitching up but I'm a firm believer that close and loved family and friends should be allowed to be involved and included. It is support for the spouse too.

tinmrn · 03/01/2024 19:40

We've been in this situation with a friend. You feel helpless. We wrote a letter saying all we wanted to say and asked his wife to read to him. We don't know if she ever did but it gave us peace and closure. A friend's loss is very hard as the 'hierarchy' of grief seems to focus on family. Sending love x

saraclara · 03/01/2024 19:48

Janiie · 03/01/2024 19:30

Once people are on syringe drivers they often do not have the choice to stay awake and host, they are usually unrousable.

Fine this man sent his parents aways himself but what a sad thing to do. If one of my dc were dying there is not a chance I'd want to be apart from them to await news of their death.

I don't agree with just anyone pitching up but I'm a firm believer that close and loved family and friends should be allowed to be involved and included. It is support for the spouse too.

Show quote history

I'd be gutted too. But it wouldn't be about me. It has to be about the dying person.

Having been with my husband while he died, I recognise that some people simply don't have an ounce of emotional or physical resources to spare on anyone 'extra' to their main carer.

In hindsight I'm sure it was incredibly hard for his mum and his sister not to be with him in those very last days, and I'm extremely grateful to them for not putting any pressure on us to be there.

When you're shutting down, it's not about anyone else. The dying need peace.

saraclara · 03/01/2024 19:51

I don't agree with just anyone pitching up but I'm a firm believer that close and loved family and friends should be allowed to be involved and included.

I meant to quote this. The dying person calls the shots. No-one else has a right to demand that the person allow them to be present

AnnaMagnani · 03/01/2024 20:05

I don't agree with just anyone pitching up but I'm a firm believer that close and loved family and friends should be allowed to be involved and included. It is support for the spouse too

Thing is, it's only about the dying person and what they want. And not every spouse feels 'supported' by the visitors. I've spoken to a lot of spouses who wish the visitors would go away as the spouse knows time is very short but they aren't getting any quality time with the dying person as so many visitors are turning up and exhausting them.

It is very hard when it's an adult dying whose parents are still alive. But again it is up to them who is there and it's not uncommon for them only to want their spouse. Everyone feels for the mum and dad so badly but it is entirely up to the patient.

FlyingCherub · 03/01/2024 20:13

My Dad didn't want anyone other me around him in his last days - even my sister agitated him, as she kept trying to get him to talk. So I was the only one sat with him at the end. The last 3 days, he was on a syringe driver and wasn't with it at all.

When I saw a bereavement counsellor afterwards, she explained it as imagine trying to sleep with a group of people sat watching.... and that's a good analogy. Dying is a very private event, and not something for audience participation.

And dying of cancer, honestly, it's not nice. I still struggle with some of Dad's last week. Treasure your good memories

AnnaMagnani · 03/01/2024 20:32

That's an excellent description of how to visit someone at end of life.

As staff we can see a real difference in the patients whose family sit quietly reading a book or watching the TV, and those where everyone is talking loudly and rubbing the person's hand and asking them questions.

Of course you can't go in and say 'I think your relative would be more settled if half of you went home and everyone else sat in silence' but staff often wish they could.

tinmrn · 03/01/2024 21:02

These are really helpful insights. I agree it's such a deeply personal private time.. I felt like an intruder when called to my dying grandfathers bedside along with rest of the family, there were about 8 of us there all watching his every breath - I said my goodbyes &left in the end as it felt so wrong to me.. never had any regrets. I am terrified of being tortured by a loved ones last moments & would rather not be there selfishly.

Original poster

Cleanbedsheets · 03/01/2024 21:12

Thank you for your messages. In my message I was sure to tell her that she had the option to decline my request as didn't want to intrude. I don't know her very well, they were together for a few years but had broken up a while before he was diagnosed. When he was diagnosed they both agreed that with her is where he wanted to be. Not even sure if they are actually together as in, a couple. Neither was he.

That's all irrelevant anyway. I've told her to let me know if there is anything I can do.

We have agreed she will send a "X" via text when he goes as I'm sure she will have enough people to call when the time comes.

I'm bobbing around in the background really.

We used to be ever so close, went on trips away together. It was only when I settled down and moved away that we didn't see much of each other. Some of his messages from February this year read that he is so happy I am now a mum and that he always thought I would be a great mother and that I'm his favourite person.

Just to clarify it's completely platonic, I am gay.

He has the biggest smile, everyone who meets him, loves him. He would never ask for anything from anyone, even when at his lowest points.

The most positive person I know. Don't get me wrong, sometimes he was a massive pain in my arse.

I haven't messaged for an update tonight as don't want to bombard her.

OP posts:

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