End of Life group

Hi Ellen and Rachel

I hope that you don't mind my open comments on this issue although I am not yet very qualified to make them. I am a fairly new member of the incurables group and I do more lurking than chatting as I am at the beginning of this path. I have a few concerns about separating off the end of life group but I am very happy to be over-ruled by them if this is what they want as their needs come first.

I find it incredibly helpful to read the end of life discussions even although I don't contribute. On a practical level I have found out a lot of information about facilities that are available, hospices etc. I have also been astounded at how many members are able to gain acceptance of their situation and pass onto their final stages with dignity and humour and with open discussion of when to stop active treatment. It is different for everyone but I know that as an incurable I will be at that point some time in the future and it helps me, and gives me hope that I will get to acceptance of my imminent death as well and pass with some dignity.

I also think that many of the end of lifers have been chatting to their friends for several years in many cases and have made real friendships and by cutting off the end of life group they are losing the easy access to the incurables group and their friends. And this goes vice versa, we all want to know what is happening to our friends. Although moving from group to group is straightforward it isn't easy to keep up with activity on several groups especially when you are end of life. Also I wonder if you are moving them away so that I can't see their posts, I feel as if I am not wanted in that group and I will inevitably therefore be cutting them off.

I also worry that when my time comes to actively participate in the end of life group there will be very little activity. It is by definition for end of lifers who are dying so the population will often be sick and weak and perhaps be unable to post very often and without regular posters the group will wither away as they die and not get replaced. The lung secondary group is like that, lots of members but hardly any activity.

Finally I feel that death ought to be more widely discussed, this society seems to be allergic to it and once you are incurable you are forced to embrace it as inevitable. I wonder if the urge to bury it away from us incurables is more to do with incurables being offended by being reminded of death rather than the complaints of dying members being bothered by those not yet at that stage. Obviously if I am wrong I am happy to be contradicted. Surely Macmillan was set up to bring the issues of cancer and dying out into the light and let us talk about those subjects that may be taboo among our own families and friends. We are all dying and sometimes embracing that fact can make our remaining days all the sweeter as we learn to enjoy the small things.

Sorry lecture over

Hi Nicky Nosher,

I was interested to read your comments as I'm very much in favour of separating the two groups. 

At the moment you can find yourself in this end of life sub group by default, so anything that helps to steer people away from the group and content they may find distressing is helpful.

More importantly I think it's essential to protect those of us in the group who do find it an invaluable source of support, inspiration and resources, but in the present format not always a safe place to express ourselves.

Posts have been criticised, members insulted and judged, causing a great deal of distress. The moderators have been quick to step in and have a difficult job, but this is not the place to challenge each other's views and certainly not the place for confrontation.

My feeling is that this needs to be a private and stand alone group so that members are making an informed decision to participate in a safe and non judgmental place. It's really good to hear that you find it helpful and find hope in the group, and I hope you'll still be very welcome.

Hi

I have clearly missed the problems that members have been having and it is of course the wishes of the members that must take priority so you will have no further arguments from me. It is good to know that there is a group like this for when we need it. There does need to be a safe space for people to discuss these very important end of life issues.

Hi Nicky Nosher

I was very interested in what you said, food for thought. You also put into words exactly how I feel about the discussions in this group.

Fortunately these incidents are isolated but very hurtful.

This is your time too. 

I'm very interested in all the comments and the move to separate incurables from end of life. I'm moving into end of life, but have to say, once I was told I was terminal, my life and my thinking was changed forever. There is a journey between incurable to end of life, stages that one has to go through. That might be helpful to all, but as time has passed, I can say, I cannot speak to family and friends about very important and private matters, this leaves us in a very lonely space. A kind of no-mans land that you try to negotiate by self. I'm concerned about worrying others with details they may not want to hear yet. Everyone approaches their end of life uniquely, I'm thinking of Frank singing 'My way'. I never understood that song until now. It is a sacred, private trek into the unknown. If sharing my thoughts with others gets me through a bad day, that's then a good day. End of life should be treated with the utmost dignity, respect and privacy to members who are going through that. One day at a time, one stage at a time. I hope it works out for you all.

Kate.  

I think members are largely asking Macmillan's definition of 'end of life' or terminal actually is. Also clarification if an incurable can post in the end of life group or not and vice versa? I think once these things are clarified, then there will hopefully not be any upset or confusion.

Final thought, is it end of life patients only or to include carers etc of end of life patients too?

Dear

i think you hit the nail on the head when you say there is a transition between incurable status and end of life, it’s more of a psychological process and it’s not something that happens in one day so you might find your feet in both camps for a while. All I do now is tailor my response to people in the incurables and leave the more delicate stuff to end of life forum. I’m not prepared to give up communication with my chums in the incurables so I think making the split between the two groups more formal is a good idea, so as to avoid them receiving emails from admin that they might interpret as criticism although that is not their attention. I know tvman who is facing his own challenges with his blood cancer has been perturbed by this problem and I want to support him in anyway I can so he feels comfortable in the community, he is such a inspirational person and the incurables forum is such a success because of his contributions. So hopefully he will be back on form soon after having a break from things.

You've hit the nail on the head, there is a period of transition between these stages which is intensely personal.

My feeling is that any members of the incurables group who feel that they would benefit from the end of life discussions should have access to them and be free to contribute, it just needs to be very clear that it's a stand alone group that you are subscribing to. Some of the upset and confusion has come from members accidentally finding themselves in the middle of content they found distressing.

Unfortunately some of it has also come from a lack of respect towards fellow members which is unforgivable.

 The saying, "We'll cross that bridge when we get to it" works for some, but for me and for my family the way to navigate safely across the bridge is to plan ahead and have contingency plans.

I would prefer that it didn't include carers, as many of us are able to talk freely about issues we can't or don't want to discuss with our nearest and dearest. For me that's liberating.

As always it's good to hear other members thoughts.

xx

I agree with a lot of what has been said. I think separating the groups is sensible, so people know where they are.  I was often thrown in my early days on this forum to find myself on EOL sub-group , and having to return to LWIC group threads, when I thought that is where I was. I got used to it, but at first it was odd. If it is clearer, those who are likely to be disturbed by honest and frank discussions of end of life wont find themselves reading it by mistake. But I also absolutely agree that we need to be able to post and read in both groups if we want to, as there is no obvious step over line in reality. I assume that wont be a problem, so should be no major issues unless I am missing something.

THIS  SUMS UP MY FEELINGS ;)