lonely together...

baybay1959

This just may be the title of a book i may inevitably write....lonely togethet.

Met my husband this past May.  Love at first sight.  Talked marriage a week later...b

 

ut didnt get married till june.  In july he started....the headaches...sporatically.  by august? Headaches nearly everyday.  So stubborn.

 

...but finally got him to go to the doctor in sept.  On september 27th?  Diagnosed with what i already knew psychically...the very day i met him.  I have thisgift...or should i say horrid curse...to know when someone is ill by the first touch...handshake or kiss on the cheek...etc.  with him? I knew he was ill and didnt have much time left....but i had this insatiable desire to be his....to be the one who would make him happy for the time he had left.  

 

 

I didnt know what it was until the headaches...and then i knew.  Small cell lung carcinoma with 5 mets to the brain.  The rest i will save for the probable book...but to save you the long novel...weve been through the surgery to relieve pressure to the brain...through the radiation...and now into the third cycle of chemo which begins next week.  

 

 

He is 6'6" and 268 or so in weight...which is now fluctuating a bit.  Ive shaved his head now and he is tired quite a bit.  he is not opposed to sleeping sitting up or lying down.  He has already lost interest in fishing...which was so much his pass time that this is how we met.   He still smokes nearly 2-3 packs a day.  The steroids have brought on diabetes and he refuses to take insulin for his already high count of 500 sugar.  He also refuses to take the pills.  He social drinks still with an occasional urge to put on a drunk.  He is 50 years old.  He is beginning to get very dark patches around his eyes and has a large purplish discolorization on his upper back...mimicing the color i sometimes notice on his scalp.  His voice was once deep and raspy...and if youve ever seen the movie "Sling Blade"...thats the same voice...however its even deeper now with loss of voice totally at times when he talks.  He complains a lot about extreme pain...like charlie horses in both legs and his hands cramp to the point of distortion.  His blood work and potassim levels and electrolite levels are fine.  Emotionally hes pretty strong..however has no technical ability...thankfully...so does not bother to research his disease.  He has no clue his oncologist only gives him 9 months from the date of diagnosis (5-6 left to go if you go by date of diagnosis and not date of symptoms which was two months prior....leaving only 3-4 months).   He is not the type of man to take that news.  Not because he may lose himself...but because his biggest and most paranoic fear is losing me....in which is purely delusional of a thought as i wont leave him.  He has this irrational fear i may throw him away like some broken toy...or worse...have an affair...all purely thoughts brought on by the evil demons that live inside the steroids.  His apoetite is ok...but labored..as he says he cant taste anything really.  he says although he is sleeping he feels he is getting no rest.  He now has bouts of numbness in his feet...and his copd along with chronic bronchitis and borderline emphasema...along with one met invading a sinus cavity...leave him coughing most of the day and night.

 

 

Now..i may have some psychic ability...but not enough to know what to expect.  I need some help with that...and dont hold back.  Does any of this sound familiar to someone out there?  Is he in the active dying stage...as they call it?  What comes next??...dementia?  Seizures? Puking blood? What??? Id like to prepare as best i can.

 

 

The doc is ms. Matter of fact.  Have u taken your pills?  How r u feeling?  Any changes?  Your weight is good...BP is good...blood work perfect...make sure you wean off the steroids and take that sugar medicine and get your new cat scan in a week.  See u then!  And then she spends a few minutes with me as i ask her to tell me the truth.  She says 6 months...

 

Now i ask you...given his age..symptoms described...etc...for the truth beyond the clinical white walls of the doctors office.  Just what is he and i about to experience???

 

....am i wrong for already buying what i will wear at his viewing?  This man...my husband...whom i love but dont really know anymore??

grandmafay

Sorry

i only come to the boards now and then these days or would have commented earlier. I am sorry you are going through this. Caregiving is very hard. I lost my husband 5yrs ago after a six year battle with colon cancer. The literature showed that the average survival was 22 months. We had been married for 42 years when he died. I can tell you it is never long enough. I was blessed that my husband was a good patient. He had a great sense of humor which he never lost. His greatest concern was me as well. I kept telling him that I was a strong indepdent woman and would be fine. Five years later I am almost that woman. Ican also assure you that I also thought about what I would do when he was gone. we discussed his memorial service and even his grave stone. I felt guilty about thinking ahead, but when I mentioned this to my husband, he said it made him feel better knowing I was preparing to take care of those things. 

Have you contacted hospice? He may not be ready for this, but hospice is there for the whole family. They might give you some support. Just talking to them might help. Remember, too, to take care of your self. That is the number one rule of caregiving and the hardest to follow. Fay

baybay1959

grandmafay said:

Sorry

i only come to the boards now and then these days or would have commented earlier. I am sorry you are going through this. Caregiving is very hard. I lost my husband 5yrs ago after a six year battle with colon cancer. The literature showed that the average survival was 22 months. We had been married for 42 years when he died. I can tell you it is never long enough. I was blessed that my husband was a good patient. He had a great sense of humor which he never lost. His greatest concern was me as well. I kept telling him that I was a strong indepdent woman and would be fine. Five years later I am almost that woman. Ican also assure you that I also thought about what I would do when he was gone. we discussed his memorial service and even his grave stone. I felt guilty about thinking ahead, but when I mentioned this to my husband, he said it made him feel better knowing I was preparing to take care of those things. 

Have you contacted hospice? He may not be ready for this, but hospice is there for the whole family. They might give you some support. Just talking to them might help. Remember, too, to take care of your self. That is the number one rule of caregiving and the hardest to follow. Fay

im sorry too

Thank you for replying.  Sorry for your loss.  if i call hospice i have the type of husband who will see that as both an invasion of privacy as well as possible betrayal.  It may also frighten him ad he knows hospice is usually called in towards the "end".  He wont even like me being on this forum.  He wants as few people as possible knowing our business.  i do plan to take care of myself for this.  I know that is important.  Small cell lung carcinoma thsthas mets beyond 1 (his being 5) is a bit more "matter of fact" where the rules of cancer are concerned verses that of colon.  Colon is usually the easiest to control where this is a very aggressive csncer and the most life threatening...im afraid.  Ive read nothing that would give even a strong youngerpatient more than a year...and well...in the description of my husband in my opening message...you can see how far he is from that.  Therefore...aside . from God's miraculous powers...and i have been praying for them..i believe his oncologist is most likely spot on.  Aside from that thereis new news.  Christmas eve he began to weep while at my daughters Christmas party.  I pulled him aside to ask what was going on and he said ge felt bad.  He said he hasnt told me but for the past two weeks his legs have been not right.  They sre wobbly like he is drunk.  He said his headaches havebeen getting worse and he thinks he has new mets.  His hands and feet are going numb at times too and he has had little to no appetite. I tried to play it up as chemo side effects and calmed him down.  I got him to take his steroid...xanax...and oxycodone and he was better after home and resting but he cried all the way home and up to when the meds worked.  I cried on the way home too...but it was dark and i didnt let him see me so he wouldnt syspect that i wasnt strong and he would also suspect he had good reason to be fearfull.  Im part right on the chemo effects but i think he has new mets to and his sugar as well....which he refuses to medicate...just may be his downfall before the cancer...since he cant wean off the steroids with new worsening head pain enough to stop the sugar.  I fear we are in trouble here.  His next appt is the 30th but his CT is the 2nd.  He refuses to go to the hispital and wont let me call the doc until he thinks its bad enough too.  However i am watching closely and am more than ready to over ride both those dicisions...i just havent seen what he is complaining about physically happen and have been warned about delusions from the steroids..so im on it...but in perpetual wait.  I thank God he is so strong tho.  He even comforts me when i cry in my sleep from the nightmares i live with while smiling for him during the day.  I thank God also that he never asks me what they are about.  My veil came in today but i hid it in my purse on the way home from the mailbox so he wouldnt see it.  Ive been ordering my mourning outfit a little at a time and now its complete....but i do hope i have 6 years like you did...verses 6 months.  

grandmafay

baybay1959 said:

im sorry too

Thank you for replying.  Sorry for your loss.  if i call hospice i have the type of husband who will see that as both an invasion of privacy as well as possible betrayal.  It may also frighten him ad he knows hospice is usually called in towards the "end".  He wont even like me being on this forum.  He wants as few people as possible knowing our business.  i do plan to take care of myself for this.  I know that is important.  Small cell lung carcinoma thsthas mets beyond 1 (his being 5) is a bit more "matter of fact" where the rules of cancer are concerned verses that of colon.  Colon is usually the easiest to control where this is a very aggressive csncer and the most life threatening...im afraid.  Ive read nothing that would give even a strong youngerpatient more than a year...and well...in the description of my husband in my opening message...you can see how far he is from that.  Therefore...aside . from God's miraculous powers...and i have been praying for them..i believe his oncologist is most likely spot on.  Aside from that thereis new news.  Christmas eve he began to weep while at my daughters Christmas party.  I pulled him aside to ask what was going on and he said ge felt bad.  He said he hasnt told me but for the past two weeks his legs have been not right.  They sre wobbly like he is drunk.  He said his headaches havebeen getting worse and he thinks he has new mets.  His hands and feet are going numb at times too and he has had little to no appetite. I tried to play it up as chemo side effects and calmed him down.  I got him to take his steroid...xanax...and oxycodone and he was better after home and resting but he cried all the way home and up to when the meds worked.  I cried on the way home too...but it was dark and i didnt let him see me so he wouldnt syspect that i wasnt strong and he would also suspect he had good reason to be fearfull.  Im part right on the chemo effects but i think he has new mets to and his sugar as well....which he refuses to medicate...just may be his downfall before the cancer...since he cant wean off the steroids with new worsening head pain enough to stop the sugar.  I fear we are in trouble here.  His next appt is the 30th but his CT is the 2nd.  He refuses to go to the hispital and wont let me call the doc until he thinks its bad enough too.  However i am watching closely and am more than ready to over ride both those dicisions...i just havent seen what he is complaining about physically happen and have been warned about delusions from the steroids..so im on it...but in perpetual wait.  I thank God he is so strong tho.  He even comforts me when i cry in my sleep from the nightmares i live with while smiling for him during the day.  I thank God also that he never asks me what they are about.  My veil came in today but i hid it in my purse on the way home from the mailbox so he wouldnt see it.  Ive been ordering my mourning outfit a little at a time and now its complete....but i do hope i have 6 years like you did...verses 6 months.  

Hang in There

Caregiving is a real roller coaster ride. My husband had several different chemos and each came with its own side effects. He didn't have to take steroids, though, and I understand those can really mess with you. My husband and I often laughed and cried together. we were blessed with a good support system of family, friends, and church family. Also, Doug had a strong faith that helped a lot. The number of people we had praying for us was amazing. We prayed for healing knowing that curing was probably not going to happen. I believe that he was healed. I'm sorry your husband is not comfortable sharing. I belong to a church that has a large percentage of elderly people. We shared openly with our congregation, and I have had many thank me for taking them on our Cancer journey. Interestingly, people have opened up more. You rarely heard the dreaded "c" word before. Now we hear it often. 

I'm glad you are taking care of yourself. I remember that even small breaks like grocery shopping were a treat. Fay