Nobody to talk to

Hi

What is morbid about your post? You are just being honest and wanting to talk about something that needs talking about. You need to talk about your end of life plans and what you want, and you just want others to be able to hear you. As others on this forum will say, making those plans and discussing them with people has freed them to live a bit lighter as they have been able to deal with the practicalities, and then get back to living.I often wonder how much assuming things about others' thoughts goes on - we think others dont want to talk about death, and they are scared to mention it to us and so we dance around it. Maybe we have to take the inititative and open the subject, and that is certainly not selfish.

If you were on here 3years go, then I guess what happens is that those around you become accustomed to you being ok and can forget that an incurable diagnosis does not go away. As you say, they see you as invincible and I wonder how much of your vulnerability you have allowed them to see. I speak as someone who is also prone to be stoic and pragmatic and not one to ask for help readily, but we have to learn to ask for help and let others in. It may go against the grain but it is time to learn new ways of being to get you through and give you what you need.

As I am sure other people will say, make sure you also access any professional support through McMillan etc.

Welcome back to the forum, I am sure you will get a lot of support here.

Hello Debbiedo,

You can share your feelings here.  I find there is always someone here in a similar situation who can relate and understand completely how you feel.

I myself have rectal cancer with many mets on my lungs and now on the liver.

i know what you mean about the invincible thing.  Most people try to change the conversation if I am in any way negative so I mostly do the whole positivity thing to avoid them feeling awkward.  I do have my husband and a very close friend I feel I can be honest with but I do feel guilty about burdening them with it.

I have made lots of plans.  I don’t know when the end is.  Although I am incurable no one has told me that I am terminal and I am having some chemo in a couple of weeks.  It has helped me enormously to put things in place.  I have purchased a funeral plan, chosen a celebrant and written down how I would like things done.  Rather than talk too much about it I have told my husband where he can find all the information.  

As I also care for my mum Who has dementia I have written down all her needs from where she gets her shopping, to the food she likes and all the essential contacts involved in her care as she is still at home.  This has given me such peace of mind.

I think if you just do one thing you might find it helps and hopefully let’s you do what you need to do.  Even if your family are not ready to talk about it maybe you could write it down and make a few arrangements that you can

Meanwhile I hope you feel great benefit from a rest from the chemo.

Very best wishes x

Dear

i couldn’t agree more with my fellow incurables, making end of life plans is not morbid, it actually frees you up to live your best life possible. You don’t need to do it all at once, just have a check list of things that need to be done and tick them off when you feel strong enough to do them, it can feel empowering believe or not. I thought you might be interested in reading a thread of ours from last year called “it’s not you it’s me” it is people’s thoughts on how a cancer diagnosis can change the dynamics of personal relationships and you might find it helpful to read.
its a positive thing that you have decided to come back to the forum and I’m sure your life will be enhanced by the incurables, they are a great group of people, whose only goal is to support each other through the ups and the downs .

 https://community.macmillan.org.uk/cancer_experiences/living_with_incurable_cancer/end-of-life/f/start-a-new-discussion/190688/it-s-not-you-it-s-me

Hi 

thanks for your lovely reply,yes you have hit the nail on the head I put on a strong front for everybody and I have always been the one who keeps the family ticking over.  I feel as though that mask is rapidly slipping away.  I will get in touch with my local Macmillan and let my guard down a little.

xxxx

Hi

thanks for your lovely reply, it would put my mind at rest if I could get a funeral plan.  I also have a son who is 31 with mental health that I am worried about when it is my time to say goodbye. My family have washed their hands off him he only has me. I will make some arrangements and I am going to get my arse in gear. I think I will start by writing everything down that I need to do.

take care 

debbiedo xxx

Hi johnty

this morning after seeing the replies I know I am not alone I am feeling more positive.

I am going to put a plan in action, try and get a funeral plan that would put my mind at rest a little.

take care 

I will go on the link you have sent me.

debbidoo xxxxx

Hi Debbiedo,

I have also turned to the site for same reasons. There's nothing morbid about your post. It's reality and I am experiencing the same problem. Trying to broach the subject with family. I'm a strong person and known for that all my life, so I identify with you completely. You have support on here and can talk freely. For me this has been like winning the lotto. I've had to keep a brave face, but we can only do this for so long, we need each other. Please don't feel alone anymore. You're not alone. Nor are you letting anyone down by being realistic. People mean well with the positivism thing, but it's hard to listen to when you're ill and fatigued from trying to explain. It's good to be positive of course, but if that's all it took, we wouldn't be in this situation. Sometimes, I feel the 'positivism' remarks are hurtful, they imply we're not doing something right. You've done nothing wrong. Feel whatever way you feel right now. We will support you every step of the way. Sending you huge hugs. xx

Kate.  

Thank you Kate

I do get a bit sick of hearing stay positive and you look well as though why haven’t you died yet teehee

take care 

debbiedoo 

Thanks for your post 

I have made a few decisions and wrote a few things down as I have travelled along but some of the bigger things like the funeral plan, DNR things that involve a bit more thought I think I am avoiding. 

So I will take a spur on from your post as others have said it helps to know things are in place. 

Dear

I was going to try and send you PM, but I think it's just as appropriate to post here.

I'm so grateful for this end of life group which gives me and many others a great deal of comfort and support as we tackle these challenging issues.

You have such kindness and compassion for everyone, and by sharing your knowledge, experiences and resources you help us all. You also have great insight, I always look for your posts and replies which seem to strike a chord especially when I can't find the words. Thank you for all that you do.

there is nothing selfish or morbid about your feelings. Your post and  replies have helped me, too, as it can be a lonely place to be at times. We present such a brave front to our nearest and dearest, so perhaps shouldn't expect them to understand how hard it is.

Good luck getting your arse into gear and remember you don't have to do it all at once. 

xx