Judith,

I don't know your financial situation, obviously, but if your employer has more than 50 employees you can apply for an unpaid leave to care for your husband under the Family and Medical Leave Act without jeopardizing your job.

http://www.dol.gov/esa/whd/fmla/

Hello Sue, Markus and Cray, thank you all for writing your posts. Sue: yes the hospital have said I would need to be his carer for a month post-op AFTER he gets home that is. I will need to learn and attend to the PEG feeding tube and I really dont know what else as the hospital havent yet said. When he is better himself, his work (office) want him to work from home for a while as he's been told by the hospital that he wont be back in the office until after Easter next year. We were scheduled to go to India on vacation in March but I guess that will have to be cancelled. I dont much fancy being there if anything goes wrong or if Harald needs medical treatment. Marks: I feel very strongly about the cigarette thing: and when I met him he was a heavy smoker and I said I would never ask him to give up: Ive no right to change what is him, but I do think now that the shock of the situation is sinking in - he has stopped for just 3 days now and seems to be coping, I know its only 3 days but the more he can give up even PRE-op, the better his recovery will be post-op as now he is coughing up all the rubbish that has been in his lungs for so long. Cray: Ironically, I work in a hospital myself, and they have been so caring and understanding to me: I should get 6 months off paid leave if need be: so I cannot complain at that. I sincerely hope I wont be away that long though and maybe I can try to work from home too. I am a medical secretary and I work for a colorectal surgeon. He deals with cancers too. Its so different when you are on the other side of a situation though. My head (brain) seems to blank out even the basic stuff I should know. Doey anyone know of any really good antibacterial wipes or handwashes (alcogel) I could take to the hospital? whilst they have it there, Ive seen a whole team of doctors in the hospital where I work, just ignore the signs of washing hands and alcogel and it can be a real problem in our hospitals with MRSA etc. There's too much at stake to get it wrong. I want to be as "clean" and sterile as poss. Its all getting a bit scary now the date is getting nearer. Wednesday is going to be such a long day, 8 a.m. until 10 p.m. I have people (friends) with me through the day so hopefully that will help. Gosh, Im so glad I found this site. Its keeping me SANE.

Thanks so much to you all.

Love, Judith xxx

Hello Margaret,

I Just saw your post. Thanks so much for that. I shall have to look into the unpaid leave issue - thats worth noting and looking into for sure. I would get 6 months paid leave so that will help. Its still not clear to me what Harald's entitlements will be from work - and I would like to know - I hope they dont "pension" him off early because he has turned 60. We dont own our property - only rent - and we would be in financial trouble if he had to finish work and I was the only one working (or not, as the case may be). There are so many things to consider - such a bigger picture.

My love to you all for caring, I really appreciate it.

Judith xxx

Judith,

Like you, my husband and I have not been married too long. And like you, my fear of losing him nearly overwhelmed me before his surgery.

When I was at my lowest, I asked a friend whose husband became a quadraplegic four years ago and whose son was recently diagnosed as a schizophrenic how she managed to face all the hard times, always with a smile and kind words and deeds for others. She said "stay in the present." She focuses only on the present and tries not to worry about the future or fret about the past. She says the future will take care of itself and there's nothing we can do about the past. So, we might as well make the present as good as it possibly can be.

Her words helped keep me going in the weeks that lead up to Chip's surgery and during the 12 hours of the surgery itself. Those words even helped me when I first saw Chip after the surgery with tubes everywhere and quite out of it. I just kept telling myself he is out of surgery not in it, he is alive, not dead and he is taking the first steps toward recovery. Somehow that helped make the impossible more bearable.

I know you have come to the right place, Judith, for the people here know so much, have been through so much. They will help you as they did me. You are not alone.

Best wishes,
Karen

Judith- I will be sending many prayers to you on Wednesday. Living in the present is the best advice even though I don't always heed it. I've been married coming up on 20 years this November. I'm 42 so I've been with this man most of my adult life and I can't imagine it without him. I try not to dwell on that too much anymore. There is such a fine line between worry and planning for the future and it's hard to define. Anyway, best wishes to your and your husband-I know he'll be just fine.

Sue

Hello Karen and Sue, Thank you so much both. Karen you are so right: its always been the way with me, thinking so far ahead and you are right - just to concentrate on the present. Im so scared of walking into the ward and seeing him for the first time post-op but as you say, that will mean he will have survived and its a step towards recovery. Im a great believer in talking and getting it all out and this forum is keeping me going. I too, found it overwhelming that I may lose him, it really freaked me out and that is why Im on tablets from the doctors - to try to keep calm. I really will take to heart your words Karen - thank you so much. Sue: Thank you so much for your prayers - I really do appreciate it so much - and I have told Harald that there are really some truly marvellous people on here that have so much to give as they understand and Im so grateful to you. I will update you as the week progresses. Today is the first day I have not cried since he was diagnosed a month ago - but he cried today - saying that no-one had ever loved him as much in his life. I never realised that too - how much I love him - it has no boundaries.

Bless you all. Thank you Karen and Sue. Judith xxxxxxx

Hi Judith,
Sorry for the delay in my response, but have been away from the board for a few days. I understand your questions as I, too was very concerned about the time I would be away from my work. I am the primary income right now and carry all the insurance, so I definately needed and wanted to be the best at my job - both at home and away. At first when Jim was going thru radiation, I didn't miss any work - this wasn't due to me, though, it was due to Jim insisting that I go to work and that he would do radiation and come home. When I had to be out of town for a week, I had his dad come stay with him, not because Jim needed it, but because I needed it to be able to stay focused on my job while he was slowing going down hill.

Since his reoccurence, I have taken intermittent family leave - we are given 12 weeks in a rolling 12 month period, so I have done my best not to miss too much work, but have been there for Jim when he has gotten sick - and to be honest there were Dr. appointments that he could have gone to without me, but I needed to be there to ask questions and gain my own insight into this beast. There have also been times, that I have been so exhausted after a Dr. appointment that I just came home and "vegged-out". The literature mentions that chemo can cause depression on the recipients, but it also causes depression, exhaustion on the care-givers as well. Jim is also a little different in that he has a prosthesis and has to use crutches...which is EXTREMELY difficult when bodily functions happen without any warning...so I stay with him during those times. My job is very stressful as I manage about 90 employees of which they too have issues...I have been with my company for 16 years now, of which I do not take it for granted....I work for an incredible and supportive organization, but I also know that I have a responsibility to do my job as best as I can...however, I do let people know about what I am going thru on as a "need to know" basis and not a "nice to know" basis, except for my personal relationships.

As Jim becomes weaker with the more chemo treatments I suspect that I will need to be off of work more and more. I look at everyday that I can work that is just more hours that I don't have to use up and that will be available to me longer term...everyone is different - caregiving is hard, strenuous and extremely tiresome....besides my Lord and Savior, this sight is my only saving grace where I can truly be myself, vent, cry, cuss and be loved all the while....

Liz and Sue have been extremely helpful to me as our husband's diagnose and treatment are very similar....if I ever come into a bunch of money...this site will receive it as I could never repay them for all the support they have given to me - morning, noon and night...24 hrs. a day, seven days a week.

Hang in there! We are all here for YOU! Hugs to you and yours...
Paula

hope you got my pm judith.xx

all the best for today.

Hello Paula and Hello Liz, Thank you for all that information Paula and the hugs I received were well and truly appreciated. Harald was admitted today and Im at our home now and just had a really good cry - it was so horrible to leave him. I never knew how much I love him - truly. Its breaking my heart and I fear its cracking me up as they keep saying hes not the fittest man for surgery - but he always has seemed to be so to me - apart from the smoking and the obvious SCC he now has. The docs are hoping that the flap will take with the arterial supply if his arteries are clogged after all the years of smoking. Every time I come out of that hospital Im in a state because of what they say - I know they have to say those things but it really puts the fear of god into me. Liz - Im not sure - did I miss a previous message from you before? I see you are in UK. How are you coping? please post to me again. I would love to be in touch with you.

Im so tired mentally, off to bed now. Tomorrow is a new day. THANKS SO MUCH ALL AND MUCH LOVE TO YOU

Judith xxxx

That's the weird part of the flap -- A junior Doc comes around every six hours and pokes pins in the 'new' tongue to see if it bleeds (proving the blood supply is working) -- Fortunately, the nerves aren't hooked up, so it's more a nuisance than suffering.