Is it Taboo To Actually Avoid Family And Prefer Dying Alone?

Hi Forester42, a long interesting post, my take on reading it is that you want to retain your independence and want to cope for as long as possible on your own, you think there will be family pressure telling you that it’s wrong to be on your own when there are others who either want to or feel they should look after you. I have a feeling that you are just getting your feelings out, and convincing yourself that you are right as you type the post, and not asking for a chat or a reply. I may be wrong, but that’s how I read it, perhaps because there are times when I have felt that I just need to get information and feelings out and don’t want a reply. When I feel like that I have sometimes clicked on Blog on this site and created one, a way to make sense of what’s happening, and a way of looking back at things. I must admit I’ve got stuck in the last year and not felt like doing that either. 

I’m a patient, diagnosed in 2015 as incurable, with metastatic melanoma and back then told I might have less than 12 months. You have said you don’t want to hear the false hope stories, and I don’t think anyone does when they get to a death bed stage, I know when my time comes I want to die well, and by well I mean having acceptance of what will be about to happen to me and not wailing why me, or being in some kind of denial, but living well and enjoying things around me right to the end. When I was diagnosed it was three months after my Mum had died and I was still grieving for her, and suddenly found myself grieving for me, and feeling I was going to be experiencing my last birthday, last Christmas, thinking of people befriending me just because I was a vulnerable person, thinking I would never see my kids get married, hoping that my husband would get remarried (but not while I was still alive), hoping that he won’t find himself all alone (although he might like things that way). I also had a period of numbness where I didn’t know what I felt, music was good it gave me a clue as to how I was feeling. Could I listen to songs and sing along with them like I always had, or did the lyrics suddenly start screaming at me that I was about to be alone, or my husband might be alone soon. They screamed at me and I cried. 

After 9 months my first treatment failed and my cancer progressed further but a new treatment had just become available on the NHS and I’m still here. I sometimes get embarrassed about that, that I’m still here, as if it’s an unbelievable story that people don’t want to hear, especially when in a mood for wallowing (I cant tell what mood you are in by the way). For a year I had scans that showed no evidence of disease and then after just getting used to the idea that I had miraculously beaten this my scan showed a recurrence, well that wasn’t meant to happen! So for the last few years I’ve been back on treatment, sometimes appreciating that I’m still here, and other times thinking how unlucky I am that I’m still on treatment very 6 weeks. It’s a little bit like yourself, you have said that you are waiting for medics to confirm things, you seem to be pondering if it’s bowel cancer, pondering if it’s treatable, pondering if it’s incurable, letting thoughts of dying with family or alone float through your mind. A little bit like you not the same thoughts, but the fact that I’m dealing with uncertainty to, not every day, just at times when scans are due or I feel something has changed.

I hope you hear soon, I hope that you get some comfort in using the online community to process all your thoughts. I hope that the message that Macmillan gives of not having to face cancer alone (I can’t recall what the adds Ive seen on TV say exactly) but I hope the message feels like a nice one, that people want to help, but it’s your choice in the end. At one stage I had thoughts of hospital, hospice or home for a place to pass away, but at this very moment, I have just had scan results and I am no where near letting those thought linger they can just float on by for me.

I didn’t mean to do such a long reply, in fact when I started I wasn’t sure what I was going to say, it’s just evolved as I’ve typed, I think I should have simply said, I think I perhaps know how you are feeling in your period of uncertainty, I think it’s natural to have thoughts that are racing ahead of where you are, and I hope you find a way to acknowledge those thoughts but not necessarily dwell on them, and to have some normality in your waiting period, and to let us know how you get on, and if you need any help.

Take care, 

I am trying to convince myself but I do welcome feedback from others - not sure if I'm alone thinking as I do. - Part of me feels monstrous for denying family a chance to observe my final reaping. In many losses the news comes that Dad, mum, husband or wife have died, but with a potentially terminal illness the mourning kicks in even before the end so cutting them off from being able to fully share in that seems mean of me but also fierceky independent - it is a very conflicting state of mind to face with no easy answers  - I do appreciate your lengthy reply.  It is good that you have defeated the time limits initially given for how long they expected you to last - I do try to focus on day to day living and doing stuff, and if not for Covid I'd be trying to travel around with my cameras but my books are my best escapism channel at present. 

Thanks for getting back to me Forester42, I have a friend who’s sister has pancreatic cancer, they live miles apart both on their own,  and apart from a short flurry of help when first diagnosed the relationship between them has stayed much as it was prior to the diagnosis so I’m sure you are not alone with contemplating your independence. I have had conversations with my friend over her feeling that she should help her sister more but respecting her sisters wishes, not taking offence over it but standing by, if and when Help is needed. I firmly believe a decision is only right on the day its made and things can change and decisions change.

Some people keep even their diagnosis to themselves as they don’t want to be treated any differently by others. I blurted it out to everyone as I found it hard to believe, as if the more I voiced it the more it would sink in! I think you are saying you’ve told your Mum and she wants to see you, which is hard in itself in these covid times. In my family they understand that I fall into a clinically vulnerable group, and so with your Mum believing in hope she might well understand not seeing you in person to. You seem to be saying it’s the wider family that will need to help her visit that you might find difficult. I think as a lot of time has passed that reluctance may alter depending on how much you want to see your Mum, or how much you think it will hurt your Mum if she doesn’t. 

My daughter had been working in Japan for 7 months when I was diagnosed and she asked if she should return. As a Mum I would love her to live near by, and see her more, as a Mum I also didn’t want my illness to alter her career plans especially in case she came back and I was no longer here. You are right there is a lot of talk of not being on your own through cancer, and as you are here on the site I am imagine you are reaching for some support, it doesn’t have to be family or friends who give that support, or there would be no one here to talk to !  So no it’s not taboo to avoid family and friends but it’s not wrong to embrace them either. I’ve left out the dying alone part as my Brain doesn’t want to go there yet.

Take care.

Hi Forester42,

Welcome to the community.

It seems to me that there are two issues within your post.  Firstly your concern that you may have bowel cancer and the ongoing investigations of this.  It is inevitable that we worry about the worst possibility when there is something wrong with us.  As such you are more than welcome on the site.  However, it is important that you continue with your day to day life as much as you can in the meantime.  If it does prove to be bowel cancer then it can be very treatable depending upon the circumstances.  I do know of people who have presumed the worst, gone around telling everyone that they have cancer, have given away valued possessions as they were convinced they were dying, not arranged to do things as they presumed they would be dead by then or at least too ill to attend only to get the all clear and then have to explain to friends that they are not dying, having to deal with having given away things that they now wished they still had and missing out on events as they had not arranged to go and now it was too late to do so.  I am incurable and would advise anyone that even if they are ill then it is better to get on with living and have some enjoyment rather than sitting miserably waiting to die.  Hopefully your results will come back clear and although you will still have to find out what is causing your illness you would be confirmed as cancer free.  Please let us know how you have got on once you get the results.

The second issue is your situation with regard to your family and if you do prove to have cancer how you deal with this.  I am very much of the belief that it is entirely up to you how you deal with this.  I did choose to tell my family but at the same time was very specific about how I wanted them to approach it.  I did not want stories of people who miraculously recovered from cancer (often of a type completely different to mine).  Nor did I want advising about diets, superfoods, mediations or faith treatments which could make me better.  I personally prefer to put my faith in the medical profession but that is my choice and others might feel differently.

I was surprised at how well my mother took the news and mentioned this to her.  She explained that her cousin had seen her about a year earlier and advised her that he had terminal lung cancer, and she was distraught to the extent that he was comforting her.  Eventually he got fed up and snapped at her that he was the one suffering from cancer not her and she should stop being so selfish!  I would have struggled to say that so bluntly to my mum and would probably have advised her of this a bit more gently at a later date but I am very pleased that my mum's cousin paved the way for me.

As for who visits and how you decide to go at the end then again so far as you have choices available then you can decide.  When I do die I hope to be able to go to a hospice so as to save my family the distress of dealing with it personally.  However, this does depend upon availability at the time, my second choice would be to die in hospital but again it depends upon a hospital being prepared to admit me.

With the situation as it is with covid people may not be able to get people to visit who they would like to see.  However, there is no rule to say that you have to see everyone who does turn up and you are perfectly at liberty to refuse to see them, or to ask them to leave it it becomes about them or a competition.  I would suggest that you make it clear to your mum that you would like to see her but to ask that whoever travels with her either waits outside or comes back to pick her up at a set time.

I choose to be involved in family discussions and would be upset if someone decided on my behalf not to bother me because of my disease.  I would like to make these choices myself and am fully aware of my situation so can make my own decisions.  Equally, I would be upset if people decided what I needed to do and tried to tell me that this was what would be happening.  Cancer does not deny you the ability to make your own choices so whether you choose to be surrounded by family and friends, prefer to rely of a few dependable people or face it on your own or with the support of strangers and professionals is your choice.

I hope that you get your results soon and can resolve the situation regarding your choices with you family.

All the best,

Gragon x

Thanks Gragon,  some invaluable insights in your reply.  Sorry your own condition is not curable - hope you still get lots of joy in the time remaining to you - One the first point, while a very definite cancer has now been identified by the medics, they are confident that surgery can remove it fully and though I may need a temporary colostomy bag and health checks / treatments over the next five years my sense of impending doom has lifted and I feel as though I'm no longer just on the defensive and waiting for the inevitable now. (Only learned this 2 days ago and awaiting dates for tests to see if I can cope with the anaesthetic / surgery to come). My mum is coping well with the news, and phones me regularly for updates - though I welcome her plans to visit me once in hospital (they estimate a ten day post op stay) her escort, almost certainly one of my sister's brood, will be waiting in the waiting rooms, or exploring the city (I live 40 miles from my Mum's home) Many who know of my crisis have offered amazing support and advice not least of all on these very pages - I'm not out of the woods yet but at least I can now return fire and turn the course of this war around. It is good to feel the return of some control here