Emotionally exhausting

No you are definately not alone feel like Ive been running on empty for a long time .Its the constant fear about how the disease is going to progress .Bill has brain mets now and Im constantly watching him for any signs things are deteriorating .We havent really had a period of stability for 3 and half years since the first diagnosis so you just cant make any plans or see any future that isnt going to involve more cancer .The only way is a day at a time some are good some bad he is spending more time in bed but is still able to do most things for himself . I just think things could be worse and may very well get worse so just be glad he is still fairly alright .I feel Ive lost the man I knew but while he is here I will do the best I can for him as long as he is here .Take care lots of hugs and remember you are not alone x

In tears reading this.  I have only just joined this group myself as feeling exactly the same as you.  Well meaning friends and family not helping by telling me that they are sure everything will be fine!  My beautiful, smart teenaged daughter has a synovial sarcoma in her wrist, nothing so far has been fine!  I am struggling to stay strong and positive and those comments make me feel as though I am failing in some way.  Please feel free to share your feelings, if we can share with others who understand, without fear of feeling we are not being strong enough, it may help us cope.  You are not alone.

Dear granny sue, what a lovely name, so comforting. Thank you for your reply I have such respect for you, partner was diagnosed with pancreatic cancer last August and you have been battling for years. Its hard but we try our best I don't often find the right words we communicate less now because I try not to constantly ask how he is. He doesn't want that. His energy is low as he eats little, treats like having something nice to eat are no more. We don't do very much which is a waste of the time we have. Too many unanswered questions to make plans, yet do we really want to know. I don't know anything anymore xx

Dear Alfie, my heart goes out to you. I agree,platitudes are no help but probably made because no one knows what to say. We feel we are failing because things are out of our control. Words, money, they can't change somethings, but I guess looking into things can't harm and may give you back some feelings of control on this runaway rollercosterWe will support each other  here. Easier to talk to a stranger who is facing a similar situation than to talk to friends and family sometimes.. Stay strong, you are needed. Thank you for your reply and support 

Its though you are with someone but feel like you are alone .Recently Bill has found comfort in music I think it actually taps into emotions he can no  longer express  We went to the pictures and saw Rocketman he loved it. So on the 27th we are going to see Voodoo room which is a tribute to Jimmy Hendrix Eric Clapton and Cream .When he is listening to music I feel like I have the old Bill back for a while . Basically I just witter on about anything to fill the silence and he can join in when he wants .It seems to work and its a way through .We do laugh at stuff too mostly black humour we are both ex RAF thats how we met .Ihave a wonderful sister and best friend we meet for lunch once a week .Also my lovely daughter my rock and my son and my two little Grandsons 5 year old twins  So much to be grateful for . We will do it because we are stronger than we think .To me now its no longer a battle but an endurence and the the way through is to be stoical and just keep going love to us all x

My husband was diagnosed with bowel cancer and mets on his liver in April, I am new to this, although I looked after my Dad years ago with cancer. I really don’t feel the same person since, it rocks your world doesn’t it. My deep fear is that I cannot be a carer as I have been disabled for 17 years now and in constant head pain, he has always been my carer, I’m housebound. 

Mrs L, I feel for you. Its like a heavy monster that drags you down l, ingering in your subconscious even when you have happy moments ready to rear its ugly head. If you med help then perhaps Mcmillan will point you in the right direction, you are there with him and that is wonderful. Don't underestimate how important that is.. Keep posting and like us, let it all out xx

Hi Mrs L You can still be your husbands carer by talking to him and giving him the chance to let of steam if hr needs to It realy does shatter you and your husband and this time around its the person you love and yes it is differant this time but you did your best for your dad and you will always be there for your wonderful husband a shoulder to cry on for him and we are all here for you and time night or day there is always some one online.

A carer is someone who listens to the person talk and cry even confort the loved one dont down yourself cause you have a disability you will be there for him and there is help out there with macmillian teams who can take him to doctor or hospital appointments and im sure if you have some good friendly neighbours they would even help. I hated asking for help my when my wonderful neigbours spoke with me when my dad was so ill i new i could ask them if i needed help to do things i couldnt for my late dad. Please dont be scared to ask for help ask at your local doctor surgery and im sure they will have places and telephone numbers you could ask for help 

sending you and your husband lots of love

Irene

No your not alone we carers have to deal with so much too and find we hold everything into our selves and have no one to talk to the ups and downs are so hard i use to feel more down than ups and always felt what next is going to happen. you are here and we help support each other let it all out never fear in saying a wrong thing we all feel the same hun xxx

Oh my dear you are SO not alone!

It is exhausting, bone weary, can't think straight, brain foggy, tearful weary. It changes depending on the day, how your loved one is feeling, how you are feeling and what else life throws at you.

I try (unsuccessfully some days) to find the golden nugget of joy in the day or the hour that makes us laugh, sometimes we cry with laughter! After 18 months of looking after my Mum not a long time compared to some folk on the forum I know but long enough to know some things.

All carers will say you have to look after yourself, all well wishers will say you have to look after yourself in fact everyone will tell you that you have to look after yourself. Its true, you do have to look after yourself because you cannot look after others ifyou don't have the energy to. Its finding a balance of self care with care of others but you do have to find a way. Sleep deprevation is a biggy. I have used meditation and amytriptaline and yoga. Walks , gardening just about anything to find what works. That along with eating properly have been the two key things that if I get right and I haven't always, they make the biggest difference. Then its finding little things that soothe an exhausted spirit. For me its toenail painting and dancing like no ones watching! Nice quiet hot showers, washing and styling my hair, using a nice body moisturiser, a lovely cup of tea and  buttered crumpets and/or cake. Anything (healthy) that revives you.

Meditation teaches you not to hang on to the thoughts and feelings you experience as that can be exhausting to. To think ' oh my word, I am SO tired' rather than allowing that feeling to float by and think 'yep, I'm exhausted, what can I do to make me feel a bit better' and just let it go. Its doesn't mean your exhausted feeling isn't there but having a different mental attitude towards it can help.

Acceptance of the feeling rather than fighting it is I suppose is what I'm saying. The exhaustion doesn't go away it's just the intensity changes. Try and accept the good things and don't worry about things crashing. They may, they may not just relish the good stuff. As the Macmillan adverts say, life with cancer is still life. It may not be the one you wanted but make the most of any time and little pleasures while you can. Just always remember- you are definitely not alone!