I can't "get it into my head".

Hi

Just wanted to say hello and welcome to the club which I am sure others will tell you not one any of us wanted to join but I am glad that I did because of the support, advice I have had and just talking to people who understand.  You can ask questions and discuss things which are probably difficult to do with family and friends.  You can also have a laugh along the way. 

If you look at my profile you will see that I had a bit of a shock having been told I had no evidence of disease in January this year to being told I was incurable less than 3 months later.  I was devastated and still not come to terms with it but I am trying to live with it rather than think of myself as dying from it.

I had lots of advice and support when I joined  but in particular a very lovely lady called Daloni gave me some very good advice and I hope she won't mind if I copy it here for you.

"Value each day that you’re feeling well and try to make the most of it. It does help if you can take things a day at a time. That doesn’t mean not planning for the future. It  can mean doing what you need to do today that will help tomorrow be better.

I think there is some value in doing the “death admin”. If you haven’t already made made a will, then now it’s a good time to do it. If you have a mortgage life insurance, you might find that they pay out. Mine did. It was a huge relief to have the mortgage out of the way.You could also look at applying for personal Independence payment if you haven’t already done this. Somehow getting my life in order and doing the paperwork was, for me, almost a comfort. When the going gets tough, the tough get administrating.

I whittered on quite enough. I hope this is helpful. There’s always someone here in this select group with an ear to listen and a shoulder to lean on. Don’t be a stranger"

I have made my Will etc and I must admit it is great to just park that now knowing it is all done and concentrate on living in the day.

I am sure you will get a lot more replies but I just wanted to say hi.

Hi and welcome

I can only tell you how it has been for me. I spent a busy few weeks going through all of the death admin as others have said. My husband and daughter have power of attorney, will is done, all of my benefits have now come through, I took my private pensions early, got referred to the local hospice for outpatient support etc etc and now most of it is done and I have peace of mind (of a sort). Now I am in limbo feeling ok apart from the after effects of chemo and pulmonary embolisms and trying to make the most of the time I have left.

I have mostly good days but occasional bad ones when I feel overwhelmed and cry a lot. Some things set me off such as a TV program with happy long married couples when I know I will never make it that far. We wanted 40 years of marriage, I will be lucky to get to 16 years. Seeing mothers of the bride when I am unlikely to see my daughter get married or see any grandkids, the list goes on. Every time I have a physical set back I get a bit panicked seeing it as a step on the road to death. I think I am going to stress out every time I deteriorate. I know on an intellectual level that I will die of this cancer but I don't know how long I will have (best guess is 18 months to two years according to my Onc). Emotionally there is still a sense of unreality about it and now  5 months down the road since I was told over the phone I am actually pleased about the unreality. I think the sense of unreality allows me to still enjoy life, plan and go out for trips and enjoy the now. 

Cry when you need to, get counselling if it helps and just do what makes you happy. Expect hiccups but the misery passes with time to occasional. I use humour to cope, we joke about death scenes, I tease the kids that I will cut them out of the will if they don't make me tea. I win every argument because I tell them I am dying a lot and they tease me back that I will be dumped in the back garden in a hole. We speak about it a lot because i want them to open up to me and I want to shine a light on the subject of death and laughing about it takes away some of the fear. But this approach is not for everyone. You will find a way to cope because we must and we want to make our passing easier for the people we love.

I wish you luck in finding something that works for you. You will mourn what you have lost but you will also appreciate what you have had and will have. Each day becomes very precious

best wishes

Nicky

Hello Debbie,  Thanks very much for the post.  I have now read your interesting, and eventful, profile.  If I use the word "journey" I would say yours has been adventurous, very exploring having visited so many clinical "channels"!

I will take your advice and look again at my will to see that it still will work in the best way for eveyone.  I alrelady have the historical type "Enduring Ppower of attorney".   From the property admin point of view I understand it is still valid, but the newer "Lasting Power of Attorney" has a second part concerned with wishes about care.  That sort of thing will be more relevant as time goes on.  At the moemnt I am sure my  husband (I'm a marriged gay man) knows how I feel now, but perhaps it's time to give that side of things more thought and have a proper explicit discussion about it, and perhaps get the new two-part Lasting Power of Attorney set up.   I've used the excuseof it being a bit costly until now, but as things progess I'm realising that being careful/mean is a bit irrelevant!!  

I expect that discussions go on here about medical as we get nearer to death, so I will see what I can find.   I am terrified of pain so I want to ensure that, insofar as is possible - I gather it cannot be 100% - I want to be painless above all else.  That's a topic for another time.  But v v important for me.

What you wrote in your post, and the quote from Daloni,  has been helpful.  I daresay we will figuratively bump into each other here again.  Meantime:  good luck, and thanks.

Hi Fortiemac,

It is hard to get your head around it. All of us have hoped against hope that we are the ones who beat the odds and go into remission etc. Am sure that is universal and it is only when faced with cold hard evidence that we have to begin to face the facts of our own mortality. Everything Deb1E and Nicky Nosher say, and of course the quotes from   make sense.Somehow most of us do find a way to live with the realisation that we are on a shorter path than we thought, and I guess we all find our own way, but there is a universal truth to the idea that living in the moment, as much as we can, is the easiest way ( hope that doesn't sound too new age-y). I am a pragmatist and I get why you might say " no god stuff etc" - it can be infuriating to have people offer advice which is just plain daft. Smile politely and move on, accepting that they are trying to be helpful. You won't get that on here!  But there is nonetheless wisdom to be found in age old ways of thinking about life and mortality. I find comfort in literature, music and nature. Slowing down time by being absorbed in something which makes you feel good is a great coping mechanism.Hope you find your ways over coming weeks. There are some great supportive people on here, and no subject should be off limits, including your fears over the end of life stuff. But for now, you like most of the rest of us are "living with" incurable cancer. Am sad you are here, but hope you find support when you need it.

x

Hi Fortiemac and welcome to the club nobody wants to join. I am so very sorry you find yourself here. But also quite glad because I hope you will find the help and comfort you need at this point. My name is Daloni and I find myself slightly embarrassed that so many people are saying that they’ve turned to me in hard times. I promise you there’s nothing special about me. But I will share what I’ve learnt as I’ve gone through a very similar process to you. First of all can I challenge your thinking? You say you were foolish to allow yourself to think optimistically. So I wonder did you enjoy the optimism? I know I feel enjoy feeling optimistic so it is one of the things that I focus on. No matter what happens I can still look back at a period of optimism I know that I enjoyed it. I think there’s nothing wrong with optimism. I agree with the points made about the “death admin“. Do you get on with it. PIP payments, mortgage payments, blue badges et cetera can all make life practically very much easier and it’s a weight off your mind. Just do it. I see you already have a list of symptoms that you fear. I found my hospice nurses to be very helpful with this. We sat down and had something called advanced care planning where I was able to express what was frightening me. I heard myself say things that I didn’t realise I was scared of. I heard myself talk about becoming breathless from the lung tumours. I heard myself talking about being scared of having a blocked gut from tumours down there. I heard myself talk about being in pain. I hadn’t realised how frightened I was of these things and she was able to help me by explaining how the hospice would address the symptoms and how in fact they wouldn’t let them overwhelm me. I have since found this to be true. I’m in a hospice now and both my symptoms and my fears are being addressed. You ask how long it takes to “sink in”. I think that’s a great question. It took me two years. My most useful tools were meditating, massage therapy, counselling, practical planning such as doing the death admin and emotional work with the kids. Do and use what works for you. I hope this is a helpful start. Please think of this as an ongoing conversation and I’m more than happy to chat to you. I’m more than happy for you to simply join in with a chat going on in this group every day. It’s genuinely really very nice to meet you. And I hope we get to know each other better. With love Daloni xx

Hello Nicky,

Thanks for the post.  Both your and Deb1E's comments have made me re-think the "admin" side of dying:  will and expression of wishes, etc.  I must have some serious thoughts and revise things a bit.

It sounds like you have developed a good way of life with your family.  I can understand your feelings of what "might have been" about your lost future.   As a much older person, I have a feeling that I have never made fullest use of my life, certainly not been selfless and could have achieved a lot more.  But, hey, I'd probably make the same mistakes.  Had I been a risk-taker my life would have been more exciting, perhaps, but possibly been more troublesome for everyone else.  I've been a "nobody", but I hope at least that means I haven't caused too much trouble?  

I like very much what you wrote about the sense of unreality (which is what I feel, we all feel) allows us to carry on doing things as normal, pro tem.  Who knows what emotions will come when the symptoms start.  For those around me, I hope I don't become angry.  (I just hope I don't turn to god, as that will be against my life-long atheism.   But equally, I won't be too hard on myself should even that happen - though it would mystify my husband!)

Thanks again.  It is so helpful to know that others are getting through it.  Each of us in our way.  

Very best wishes.

Hello Fortiemac.

I've been on the way to pegging it for three years. I think the medical treatment has been useful but the treatment I have received from the people on this forum has been as good as or better than 20 oncologists sitting on my settee giving their opinions.

I still don't believe what I have and what the end result will be, good thing probably. You really sound just the same as most people on here. You WILL get through it, thats a guarantee.

Best wishes.

Thanks, Ownedbystaffies.  

I'm wondering about the "living for the moment" idea.  As I admitted in my post to Nicky, I'm a bit of a dullard.  I "suppose I ought" to be ashamed of how I've wasted my life and achieved nothing like my peers.  But a corollary of that is that I "can't be bothered" to get too worried about it, either.  So, that I don't "live for the moment" (yet?) is perhaps an indicator that I really haven't accepted the reality of my incurability?  The oncologist, and later the nurse, have been quite clear that there is no treatment which will halp, though things can be done as the cancer grows, to help me to get nourished.  But nothing can stop its growth and spread.

I think when the physical problems, especially pain, begin I will suddenly get a change in feelings.  But until that happens, then I will take how I feel now for as long as I can.   Yet that feels a bit wrong and inappropriate to just "carry on as if nothing has happened"?  Confusing.

But now the sun is shining and I might suggest an hour or so blackberrying tomorrow.  That'll be only the second time the car has had exercise (apart from medical journeys)  since the time before the plague.  

How's that for positive thinking!

Best wishes.

Please speak to daloni again. You already sound better. She will be pleased to help and give you a range of options for dealing with your everyday worries. She has "been there and done that", in fact she is still doing it!

You won't get a better counsellor, she saved my bacon and that of plenty of others.

No, I'm not on 10%!

Hi! Enjoy the blackberrying. There’s nothing quite like it.

Norberry is quite right. You do sound better already. 
xx