The silent killer, aggressive and back. We thought he was NE

Trudy · Regular Joined: 24 May 2008 Posts: 47 Location: Hershey PA

Dearest Koik,

Oh my dear one, I am glad you both made it to your anniversary, yet so sorry for your pain, keep holding your precious husband's hand and know we are praying for you.
You are not alone

Trudy

84 yr old mother SNCLC Stage 4

koikkeril · Moderator Joined: 29 Jul 2007 Posts: 311

Thank you, thank-you,
I know I am not alone but i feel my world is coming to an end too! I have no idea how my brain is going to cope with this, my head is blustering. I asked him last night if i could leave for a little while and he said "NO" I asked if he was scared and he said "Yes". He will not sleep, i think he is scared if he sleeps he wont wake up. The seizures are getting longer and I explained what the Doctor has told me, as I want him to understand and not be scared! I was able to cuddle him most of the night and when I couldn't I held his hand. My friends out there, this is a one s*** disease and I am loathing every minute of my own life watching my best friend/husband slowly going away from me and not being able to do a dam thing about it..
The Doc said the tumour in his lung is massive and filing the space. The liquid in the brain is also extensive. I am not sure he was understanding it was our wedding Anniversary yesterday, but I gave a card to him that had a arrived and he was trying to understand what it was... Keep praying and God Bless us all! Koik

sgodshall · Regular Joined: 06 Jun 2008 Posts: 33 Location: Tennessee

Tears stream down my face as I read your post. I lift you both up in prayer. I know I'm just starting this journey and you have given me strength. Know that I send strength your way.
_________________
As long as there is Life, there is Hope.

Husband (44) with LC, mets to brain, lymph nodes and bones. Received Carbo/Taxol, awaiting new treatment. Had WBR, stereotactic radiation to brain

brainman

Koik, dear friend, I too am heart broken about your husband condition. Is his family still there with you? Do you have adequate support for yourself? It does not sound like he has that much time left Crying or Very sad

.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

pbj11 · Site Admin Joined: 12 May 2007 Posts: 1135

Dear Koik,

I hate this disease so much!! I know how muddled the thinking and feeling gets at this stage for both the patient and the spouse. The fear is so real it's like you can touch it. We can't be with you in person, but we are with you in spirit.

God bless Koik and prayers continue.

Hugs,
PBJ
_________________
Husband diagnosed with NSCLC Stage IV. (Non-Small Cell Lung Cancer) Fought & lived 2 1/2 years with multiple lines of treatment.

Post describing our battle: http://cancerforums.net/viewtopic.php?t=7026&postdays=0&postorder=asc&start=0

LizNDale · Posted: Tue Jun 17, 2008 9:22 pm Post subject: Dear koik

Dear koik,

You were one of the first to greet me when I joined 2 weeks ago (or was it 20 years? Sometimes it feels that way!).

It continues to amaze me - the compassion that all of you wonderful people have and are willing to share even while in the midst of your own turmoils.

I read your posts and I can bearly see to type. I am so so sorry you are going through this.

I know we can't/shouldn't compare situations, it's just that while I am devestated for my mom and for what she will be going through down the road, the thought of it being my husband in her place is unbearable.

God Bless you both, you're in my prayers, please please take care.

Liz(NDale)
_________________
My Mother - Stage IV NSCLC - Adenocarcinoma
Mets to Adrenal Glands and Brain
Diagnosed Thursday June 12th 2008
Died Sunday September 7th 2008

Her Story:
http://cancerforums.net/about9639.html
Her Statement of Faith Memorial:
http://cancerforums.net/viewtopic.php?t=10528

koikkeril · Moderator Joined: 29 Jul 2007 Posts: 311

Hello
I thought I would fill in the gap as from when my husband was feeling better, eating at the table, walking and started small chat to then a quick decline in health as to being back with the Doctors at the hospital saying he would not live many hours... Last week, my husband went to the hospital to have his morphine pump filled up. The Doctor was surprised at my husbands improving condition and quoted to the brother how well my husband was doing and how he was surprised he had made it this far. My husbands brother asked the Doctor if he could fly him back to India.. The doctor phoned me at home Wednesday evening, stating that he was prepared to put a different morphine pump in, this was not possible previous as the hospital didn't feel my husband would live long and the pump was expensive. It was agreed for the next day being Thursday. Stupid me! thought it was a simple op.. The Doctor told me, he would come in early morning and he would have it done after lunch. I decided I would clean the house and let his brother go, so I could start arranging for Saturday (Our Anniversary)
He didn't come home Thursday, they said he would be staying in for 2/3 days, I reversed my life to visiting home the daytime and having visiting my husband late afternoons and sleeping the nights in the hospital. I went to see the doctor in the office on the Saturday about my husband staying with me and not flying to India, to be told sorry your husband cant come home, he would be better off staying here, where we can control the pain so he doesnt suffer, as he is seriously ill and that his tumour is nearly the size of his lung and the liquid has mounted and that he didn't expect him to live very long! Some Anniversary party that was! It was such a shock, it blew me off my feet...
So where are we now, today is Wednesday? He is still alive, he cant swallow as he doesnt know how and the muscle in the throat has now packed up. He doesnt eat of course and to give a drink is difficult because where he doesn't swallow he keeps it in his mouth and starts to chock! he is coming home in a minute by ambulance, yes he is very bad and I didn't sleep last night as his breathing was bad, but I know if the sun shines, perhaps, just perhaps he may get in the garden for the last time. So I am bringing him back home again and with Gods blessing our prayers will be answered. Looking for the strength ahead, God Bless, koik.

koikkeril · Moderator Joined: 29 Jul 2007 Posts: 311

[quote="brainman"]Koik, dear friend, I too am heart broken about your husband condition. Is his family still there with you? Do you have adequate support for yourself? It does not sound like he has that much time left Crying or Very sad

.[/quote]
Yes Jim
Family still here, not sure who is supporting who around here Rolling Eyes

everyone heartbroken Crying or Very sad

I think this is his time too and he is tired and ready. breathing problems for the last 48hours, I do have oxygen at home and all necessary equipment available but if its to hard there is a little hospital like a hospice waiting for him...
Thanks for your support you have taught me a lot.

Vee Smith · Moderator Joined: 12 Feb 2006 Posts: 744 Location: UK

Dear Koik, what a terrible experience. To have your hopes raised so far only to have them dashed so suddenly is awful. Words fail me. I am so sorry that this has happened, but do hope he can have a peaceful ending at home with his family.

My thoughts and prayers are with you.

koikkeril · Moderator Joined: 29 Jul 2007 Posts: 311

Yes Vee,
Its an awful experience. If I wasn't directly connected I don't think I could totally believe/understand how someone can be dying every month? I really don't think the Doctors really no enough about any of this. Its not their fault, they take a guesstimate because we ask, but I think it really is as long as a piece of string.
My husband has come home and I saw a little smile on his face when the ambulance men left. He is content here, but I am scared as I am a panickier if someone falls over, goodness knows how I will really hold up to his death! I am aware now all the time as his breathing is very noisy and fast and I can hear it upstairs where I am typing this post to you. When he is quiet I am also aware! Goodness me, hope I wake up from this nightmare soon and find out you are all a dream and my hubby is just fine... a figment of my imagination Rolling Eyes

Nurse has just come and gone at the same time of typing this, she said for me to call the Doctor in tomorrow to check him out for the pain and the breathing and if need be problems during the night, good old ambulance service awaits... Well, I thank you for caring and helping me through this, God Bless, koik

(Its great having him back home, how ever long it last, I am profiting the minutes).

pbj11 · Site Admin Joined: 12 May 2007 Posts: 1135

My Dear Koik,

Oh how my heart hurts for you --- it is such a confusing time. All of this back and forth. Goodness!

Don't be worried about getting afraid and panicky, it's very normal to feel that way. I'm glad you are keeping the ambulance in mind too. It's so hard to know what to do at this point, but you're doing just fine. Your love shows in everything you write. If things spiral out of control, call the ambulance. Sometimes things get much bigger than we can handle by ourselves. That's okay to seek more help.

We're still here pulling for you my friend.

God bless,
PBJ
_________________
Husband diagnosed with NSCLC Stage IV. (Non-Small Cell Lung Cancer) Fought & lived 2 1/2 years with multiple lines of treatment.

Post describing our battle: http://cancerforums.net/viewtopic.php?t=7026&postdays=0&postorder=asc&start=0

koikkeril · Moderator Joined: 29 Jul 2007 Posts: 311

hey PJB,
Hubby stopped breathing this morning when nurse was here, eyes rolled and colour went and no response, his brother got the oxygen out and when I got back he told me. He looked fine! 1 hour later it happened again, I freaked out, I was on my knees, great help I am, anyhow i called ambulance, doctor has talked and said that its better he in hospital so they can give something to calm him. Did you go through this, they thought at first he would go into a coma, now he cant move because if he does he cant breath even if he has the oxygen on. He perspired and was gasping for air before his eyes went back, perhaps this is little what????s
Then OK???? Is this normal with lung cancer? Anyhow he looks OK again but cant move, I told my hubby I will see him in the next world and he told me categorically he wont and he ain't going anywhere! He grabbed my finger as I was moving away though and wouldn't let go.. He has now gone to the hospital and I am just waiting for my son to arrive. I think my husband is in denial? His brother is with him but his other brother phoned him from India the other week and said "whats up, brother"? My mad old hubby said, "nothing much broth, just a bit of a headache" Wink

he makes me laugh. Some headache this is? Rolling Eyes

God Bless, koik

simplyklb

Koik,
Lots of prayers to you and your husband and family!

Kristi
_________________
Dad - Andy, 70, diagnosed with SCLC in May 2008
Mom - Jackie, 67, diagnosed with NSCLC in May 2008

caligirl · Regular Joined: 07 Apr 2008 Posts: 37

Oh my gosh, I'm soooo sorry.
I think you're right, the doctors really DONT know. They just make educated guesses based on experience.
My mom didn't fit any of the molds either. She came back from 35 plus second apnea 4 times and lasted without water for 9 days. Even Hospice was shocked. However, she did seem to know when she was really going. The other times in the last month or so she kept saying "I do think I'm going yet". However, the day before she slipped into the come for real, she said "I don't think I'll be here tomorrow".
It all was however in the last month of her life....
I feel so so for both of you and, obviously just went throught the same thing.
My mom was not in denial and had accepted that she was going to die. Have you and your husband had these talks.
I want you to be ok if this should be the end.
Please say and do everything you need to so that you don't have any regrets of anything left unsaid.
I HATE this disease but the one blessing out of it is knowing that is was going to happen and having time to say everything......
I will be praying for you both.....
(By the way, mom went unresponsive coma a month before passing and came out of it - I think it was more to do with a stroke or seizure due to the brain mets - they can screw up breathing patterns that don't necessarily mean that death is imminent. Mom had a large one in the cerebellum next to the brain stem which controls breathing)

koikkeril · Moderator Joined: 29 Jul 2007 Posts: 311

OK Cali, Great for info.
Yes we had talks but something has gone awfully wrong. He told me what he would like me to do.. he told me to bury him how ever easier for me..he told me to live my future and keep steer of family pressure...He told me he wouldn't mind his body going for science, so he didn't die in vain...He told me to look after his mum... He told me he wasn't scared of dying but didn't want to suffer... Now he doesn't know anything?? We can not all stay at hospital, so brother is left so I could bring mum home, His brother does not have driving licences for this country, so I am the driver! Oh boy its nerve wracking not knowing if he is OK. They have given him a calment to stop him being agitated, did they do this to your mum, he is very drugged now, but he thinks he is at home. Difficult situation this is, being in a small hospital is difficult. I think my hubby's mind has gone again. According to this hospital the nurse thought he should be OK for the night and tomorrow
I have had a large wine after my tears this evening, so IO say goodnight from an exhausted koik, if I can sleep!

(I need so much time to tell him everything, I am a chatterbox that needs his ears permanently.. The problem now is he doesn't understand?

God Bless, koik

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