Even though the patient and the caregiver are on the same road together, they travel it under seperate experiences and feelings. Kind of like marriage, isn't it? Liz, it sounds to me like both of you are reacting normally and as expected.
Now, take some time for yourself and go get that grandbaby.............better yet, take Robin with you and enjoy her together.

THANKS :rolleyes:

Liz - I am so glad for the bright note that came into your life with the pics of your granddaughter! Grab on to all the bright spots you can. I really can relate to your comparison between Robin and a pet that you had. I did the same thing when my son was experiencing the worst of the treatment and I would see him sitting cross legged on his bed in a darkened room, and leaning over his soup bowl of chicken broth - It SO reminded me of a cat that I had when he got sick and would just lay there, leaning over his water dish, staring straight down over the bowl. My son told me later, that he had been waiting for the waves of nausea to subside and work up the energy to take a sip of broth. Things really do get better tho', so enjoy your granddaughter and all the bright spots you can!

Hello Liz
I had a "vision" and I was not sure if I should tell you about it...I told myself no...but it keeps popping into my head. It is a few years in the future. It is a very happy occasion. There are many people, young and old. But there are many more children. After a while everyone starts asking where is Liz? Where is liz? Has anyone seen her? Then you enter the room with a huge tray, and you are smiling. Then all the children gather around you are start hollering... there she is..look...there she is...and low and behold,there you are..."The Cookey Monster"!

Liz

I dont consider that at any time you were self pitying ..just venting a we all do !! i wasn't a care giver so I dunno...I also didnt go through Rad. But I think my hardest emotional time was after it was done ( surgery ) ..THat is when it hit. I wanted to be better and I wasnt and The tumor was gone so , I cant explain it ..LIke I knew my life was different , I could feel it , I didnt want it to e different and i was angery and frustarted and Relieved as well that it was done ..But wasnt good at expressing it . tearful more then anything. and my family didnt understand, because it was over the cancer was gone for now , but as much as it is gone , there is a part of it thAT IS ALWAYS WITH YOU.. I am sure it is the same for you caregivers to.. I will tell you I have the UTMOST RESPECT and APPRECIATION and ADMIRATION for those of you who are caregivers, Because even as a Patient , I would say to walk in your shoes can be just a difficult as ours ,,only in different ways . SO TO ALL OF YOU OUT THERE WHO ARE THE CAREGIVERS ...I SEND YOU ALL THANKS AND ((((hugs)))) FOR THE AMOUNT OF STRENGTH YOU BRING TO THOSE IN NEED! Not everyone can do what you do, you are all entilted to your bad days just as we are ....SO much heartfelt wishes , respect and love to you all !

Shar

Lia,

This is a bit late but I wanted to share with you my experiences on both sides of cancer. My mother ultimately lost her battle after 9 greuling months of ovarian cancer. What you share in your post is what I went through many times during the journey with her. You reach a point of total exhaustion and when you want to rejoice in the glimmer of hope and happiness, the patient doesn't cooperate. Up to now you have been "in charge" of coordinating everything and the entire team has listened and your ideas are very important. Suddenly everything is quiet at the end of treatment much like the calm before the storm. The intense routine that has been going on is abruptly changed and now you have to settle into a new pattern. This is very normal for the circumstances.

Like Gary and Robin, I had glimmers of hope and the feeling some days I could do anything I used to do again. I found myself worse off because of the surges of energy and doing something until I was exhausted. My striving for independence put me in a worse condition than if I had just taken things easy.

Ultimately I had to ask my wonderful wife to not go to the doctors so she could start putting her life back together. There is nothing in this journey for any of us that is easy.

I hope you have the time to talk some of this over with Robin (without the morphine). It is so important to communicate what you are experiencing.

Best Wishes,

Ed

You've entered that awful time post-treatment where you are just playing the waiting game. At least during treatment, as bad as that can be, you have a routine established and you feel like you are actively fighting the cancer beast. When treatment ends, we felt like "now what?". And kind of just stared at each other. those first few days after end of treatment were so very longggg. But then, we found our new "normal" and the wait from CT scan to CT scan gets just a little easier(we do still suffer terribly from dread the day before the CT). Your Robin has found out for himself how fragile his body is right now. It's a shame that he has to feel so bad, but he wasn't going to hear of it from you, or anyone else. He will now probably take it much easier till he starts feeling better, and he will. It just takes time. Take care of yourself and hold on to the hope that this will all get better.

I feel so bad .I hadnt noticed the many recent replies to my post and i feel like i have ignored all the lovely people who take the time and trouble to be so supportive .Petey you dont know how apt the Cookey Monster label is!!!(i am one of lifes larger ladies ).AngAK you seem to be me!!and here i am whining again.Despite the promise of recovering at my home in Yorkshire,Rob has completely dismissed any chance of a visit.I will not get to see my Grandchildren and my Mum,and i feel so resentful. I cant see what difference it makes whether he sits on his couch all day clutching the heater and doesnt speak, or sits on mine . The big difference to me would be that i have a garden i could sit in and work on and family all local who i could visit with..In other words i could start to have a life again.Instead i get up every morning ,have a cup of tea and a shower ,get Robs feed ready phone my Mum,Give Rob his feed and meds,go and get his newspaper,do the chores and then spend the rest of the day on the computer or doing a jigsaw.The highlight of the day is taking the dog for a walk.Rob spends the whole day shut in the living room with the central heating on and i only see him every three hours at feed times.He hardly speaks at all and then only in monosyllables.I am fat and this sedentry life is causing me horrendous problems with joint pains and back ache ,and i long for the fresh air of my country cottage.I dont eat proper meals because i feel guilty cooking and eating around Rob and i cant watch the tv as he has the radio on all day.When i do go into the lounge in the early evening when he puts the tv on he doesnt speak and we only watch what he wants ,and then he gets up says goodnight and goes to bed(usuually 10 mins after a programme i wanted to watch has started).I then have the lounge and the tv to myself for the evening and sit till midnight by myself.When people come to visit him he puts on a great show for them and they think he is doing well and as soon as they have gone the silence descends.

I want to go home but i know i cannot leave him.should i press my point of view and tell him how selfish i think he is being?or do i just carry on putting up and shutting up.
On a lighter note my daughter sent me a picture of my beautiful Georgina sitting in a field of daffodils oh how my heart aches to see her and my sons daughter Josie .Josie is six months old now and i havent seen her since December .She cut her first tooth yesterday and she is in nursery three days a week, her mum has gone back to work and i was supposed to be looking after her one day a week. She wont even know me any more. But not long now i hope.
To all of you who have grand children to share your life give them a special hug from me.

love liz in the uk

Liz - I can relate to so much in your recent post. It is so hard to be away from things and people that you are used to. Don't ever hesitate to express your honest feelings - chances are very high that many others have felt the very same way. The three weeks post treatment were the most difficult for both my son and me. I could tell he was in pain and I was so anxious to see any signs of improvement which seemed so slow in coming. Most of the time he did not speak at all but just answered yes or no questions with gestures. He kept the house dark and when the TV was on, it was on so low that I couldn't hear it anyway. It was too dark to read. (I did manage to use my laptop, tho) He also sat close to a heater and two humidifiers. When other people or his daughter came over, he talked! and of course they had the impression he was much better than he was. I finally asked him one day - why he could speak with them but not with me and he said it's because his throat hurt so much, he had to save it for when someone came, especially his daughter so he could speak to her. I understood that, but I did long for a smile, and eventually it did come. There were days, tho' that after he dozed off, I would get in the car and go home for a while just to be able to see the sun and breathe the fresh air. Liz - is there someplace close you could go to for just a little while and sort of renew yourself - breathe fresh air and think beautiful thoughts? I don't think Robin is being selfish - not intentionally, anyway - he's just reacting the way most people do in his situation. But you have a right to say how things make you feel without accusing him of being selfish. If you talk in "feeling" words rather than accusatory "You" words, the message tends to be received a lot more positively. Like "I feel un-loved when you don't talk to me". Gary, in his post, suggested a support group which I think is a great idea - because then you have real human beings to talk in person and share experiences so you won't feel alone. Usually the hospitals (at least here) have several groups for caregivers to share experiences or just vent. Hope I haven't made this too long - I really feel what you are going thru' and want you to know that you are very very close to an upturn in this roller-coaster ride. There is a light coming soon!

I was cold a lot too because of all the weight I lost. Maybe an electric blanket would be as effective as heating the entire house. What about getting yourself a small personal TV (and some headphones) so that you can watch what you want.

I am certain that his depression plays a large role in this. And the treatment beats you up pretty bad.

It's a thankless, miserable job being a caregiver. I am still repairing damage after 4+ years. Even buying my wife a brand new BMW Z4 wasn't enough to repair the scars...