Waiting to die - rant warning!

[tat4tit]

So good to hear from you, Tournesol, and I'm glad today was a good day 🙂  We're all thinking of you and sending lots of hugs over the airways.

I'm sorry you feel like you're in a holding pattern and have no energy, Smartie.  Sending you hugs too and hoping you are able to get to your step brother's wedding xx

[Tournesol]

Hi all,

Thanks for your replies! Still here so fingers crossed for the next sunrise... Have had some visitors today so a better day. 

Tournesol x

[helen44]

We're listening Tournesol, you rant away. I hope that you are being looked after at the hospice and you see lots more sunrises. Thinking of you and sending big cyber (((((hugs))))) xxxx

[Marie123]

Hi Tournesol,

I don't wanr to intrude at this difficult time, but I was thinking today that If you felt able to give us the name of the hospice,  that your friends here on the forum would be able to send you a card to brighten your room.  Please know that we are thinking of you .

M xxxx

[Smartie]

Hi Tournesol, I don't normally check this bit of the forum so missed your post. Sorry you are feeling so down. Is there a counsellor, or similar, at the hospice that you could discuss your thoughts with?

Have to say that I've felt so exhausted and listless the last few days it feels like I'm never going to feel any better again. My eye and associated headaches are getting me down and I have been referred to the hospital to talk about palliative radiotherapy to the tumour in my eye/on the brain surface but I won't make a decision until I know what the side effects versus the potential benefits are. 

Although I am at home not in the hospice currently I can associate with your feelings totally, I just feel I am existing, waiting for the next "event". Not much now to look forward to largely because I have no energy. Finding it difficult to go out for dinner for example, as I'm ready for bed by 8pm, even after having a sleep in the day, and I'm on steroids - don't know how much I'd be sleeping without them! Hoping it's still the after effects of my shingles but I suspect it's not and it will never end.

Got my step brothers wedding coming up at the end of October but I don't know whether I'll make it as it means travelling away for a couple of nights as its where he lives, guess I should use it as some sort of target and try to stay well enough to go.

cant seem to put my mind to anything, guess we are both a bit depressed, only natural I suppose.

Try to stay positive as I will, need to find something to occupy my time.

my thoughts are with you at this difficult time

Smartie x

[Charys]

HI Tournesol,

we are all still here, thinking of you, and ready to talk if you want to return to the thread. OR You could PM someone you know and let us know where you are exactly situated. 

CHarys x

[Carolyn52]

Hello tournesol
Good morning ..hope u slept well and enjoyed breakfast ...
We are all here holding your hand so post anything u want to ..rant or whatever ..
Xxxxx

[Barton]

Hello Tournesol, I just wish to join everyone else and wish you some better days. Hopefully you will feel a little better now you are cared for by the Hospice people - they are amazing and caring. Hopefully, too, they should be able to let you get out and sit in some sunshine for a while. I'm so sorry you are feeling so down at the moment. It must be very hard for you having no relatives, but at least friends are visiting you. I'm sure someone from the forum would be able to visit you if you let us know where you are.

Hugs, and all the best. Barton.x

[bonariensis]

Rant all you like. I wish I could be there with you so you could rant at me in person. I thought of you while I was on holiday driving through fields of sunflowers and wondered how you were. I hope you see more beautiful sunrises and enjoy each one. Much love x

[Carolyn52]

Hiya tournesol
Well you are too far away for me to visit but imagine all your cyber friends gathered around and we are thinking of you.
Loads of hugs xxx

[Moijan]

Hi Tournesol, have been thinking about you and I pray things are a bit easier for you . There are so many of us 

thinking about you and sending you warm loving thoughts.

I live near Lndon, if you want to pm me and tell me which hospice you are in, ill gladly come and give you a hug if its not too far away.  The last time we spoke, i  got the impression the hospice might not be too far away..not sure why.

on top of all the things you have to contend with, now the weather has changed and sometimes that can be depressing.....but hopefully we will have some more warm days.

much love,

Moijanxx💜💙💜💙💜

[ann-m]

rant whenever you need to, tournesol.
so sorry to hear your news, love, best wishes & hugs to you
ann xxx

[tat4tit]

Dear Tournesol,  I wanted to join everyone else who has replied and say you are not forgotten and you are not alone, if a group of cyber supporters counts!  If you feel able to tell us what part of the country you are in I am sure one of us is within travelling distance and would gladly visit regularly.  Gentle hugs xxxx

[Marie123]

Hi Tournesol,

Thinking of you and remembering you in my prayers.

M xxxxx

[Carolyn52]

Hello tournesol
I'm sorry I don't usually read these threads and missed your post.
We are all holding your hand from cyber land and so you are not alone.
Massive hugs xxxxx

[Marirose]

Dear Tournesol

I did not realise you are feeling so down remember we are all with you in spirit. We really do care and if possible I would come and hug you but I don't think you are from the north. We want you to keep posting on our skinny thread along with Smartie and Janice our hearts are with you and send loads of cyber 

((((((((((((((((((((((((hugs))))))))))))))))))))))))) and love xxx

[feistyflora]

Did you really think that you would not get any replies? This forum is like a family Tournesol and as you see there are plenty of caring 'brothers and sisters' on here who are thinking about you. I truly hope that you can feel all these waves of love and that they are giving you comfort. If I could I would gladly come and put my arms around you and give you a big hug right now.

[Tweasel]

Just wanted to add that I am also thinking of you and sending love xx

[Bella boo]

I can't think of any words that can give you the comfort you need but I could not pass this post without wanting you to know that you are in my thoughts and I so hope you get to see some more sunrises. Xx

[daisyjane181]

 Please never give up hope.  I know you must feel at your lowest ebb right now but there are a lot of people out there who will pray for you.  I will pray for you.  Love Debbie xx

[lisad]

:This has to be one of the saddest posts I have read.  I really  hope and pray that you have seen the beautiful sunrise this morning  x

[Charys]

I feel so touched by your post. I can't even begin  to imagine anything you are feeling, but your desperation and despair are so entirely understandable, but your strength of spirit also shines through.

I have no hospice experience, nor have I known anyone quite in the position you are now....but I hope that those in the hospice are aware of your feelings and are treating you with kindness and letting you enjoy everything that you possibly can. Do they monitor incase you are in pain? Are you able to go out at all ? Have you definitely decided against the radiotherapy for the brain mets?

I so wish there was something better I could say. I just wanted you to know that we deeply care about how you are feeling, and if you want to PM me that's fine too. 

X

[Jobey68]

Oh my love you rant away ,  there will always be someone here to listen and more importantly respond, I'm so sorry you are in this awful situation and truly hope you get to see many more sunrises Xx 

[rubycat]

Felt I couldn't just pass by without sending out as much love to you as possible.  You are not alone and there are many here who care and will be thinking of you.

[Tournesol]

So difficult...Have been in hospice for over 7 weeks as nowhere else to go. No partner or kids or family who could house me. Too immobile to be home with care package. Before that was mostly in hospital for a month. Had some hope until about a month ago when "only" had bone mets, liver mets, spinal cord compression (treated with radiotherapy but no surgical option), bladder and bowel problems. Then belatedly diagnosed with brain and Leptomeningeal mets in both brain lining and probably spinal fluid. Tried capecitabine for a couple of cycles in case it could help brain. No luck. Nothing more on offer unless I try some whole brain radiotherapy but it's unlikely to help either. Oh, and have a DVT too so risk from that too although I'm on blood thinners.

Some visitors but finding it hard to cope between those times.

Some of you who have stopped treatment actually seem to be feeling better and having some good times. That's great but I have no prospect of feeling better now. Just deterioration. Part of the time I hope one of the quick options will finish me off, but part of me wants to see another sunrise or more. I'm not religious unfortunately.

Not expecting any replies, just needed a rant! I just didn't think it would be so tough.