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

koikkeril · Experienced user Joined: 29 Jul 2007 Posts: 54

Hello all, I thought I would just write an update on my dear husband. Whilst the scan had showed that my husband had no cancer, he continued to have headaches! He had finished his chemo early January and was given the all clear on the 29th January. Today we have had the results back from a lumbar puncture. We were told the worst that my husband has carcinomas meningitis. They don't have to much knowledge of this type of cancer, it is relatively rare, the life span as I am lead to believe is between 4 to 6 weeks left untreated. He is very weak now and they are trying to control the pain first. We will be seeing tomorrow another Doctor to give him a morphine pump, as morphine by mouth is not effective for him anymore and he is being sick all the time. The Oncologist has put him on Tacsurv just to see what effect this may have! So that's about it, we wait to see what happens. One minute I think i am going to loose my husband soon, next minute I think I'm being stupid he's going to be o.k. I guess this is denial? He has always been my strength up to now and now I am having to be his. We agreed today after the oncologist had told us, we will not give up hope. We told the oncologist that we must get back to India. If my husband has to die then it should be at home, buried on our land. Thank you for reading and those of you being supportive. PJB a special thanks, i spoke to Dr.West he gave me advice on this illness and it is quiet rare and aggressive.
God Bless you all.

pbj11 · Site Admin Joined: 12 May 2007 Posts: 607

Koikkeril my dear friend,

I am sorry to hear that the tests have come back with this new issue. That's the cruelty of this disease. People typically have a good initial response, but the cancer is often lurking and waiting to grab hold again.

I'm glad you contacted Dr. West. I have only seen this type of complication a few times in my research for my own husband, so I am not surprised that he told you it was rare.

Your feelings are right on target -- it is a jumble of emotions when you are in the middle of the fight. Caregivers tend to be pretty realistic, but they also hold hope in their hearts and continue to fight with a vengeance. I refused to give up on my husband, even though I knew we were in a losing battle. It's a very strange thought process that we go through -- highs and lows all at the same time. It's natural and we'll all be here to help you with whatever we can during the upcoming times.

God bless and I hope they can help your husband with the pain.

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

brainman

koikkeril, I am very sorry that your husband is not doing so well Sad

. Such a poor prognosis too! It sounds like your experience has been a rolercoaster ride... but not as much fun now.

My thought and prayers continue to be with you and your husband.
_________________
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/

Vee Smith · Moderator Joined: 12 Feb 2006 Posts: 557 Location: UK

Oh dear - I am so sorry that the news is not what we hoped.

It is important to get support from the medical team to get your husband home, if that is what he wants and if the treatment is not going to overcome the disease.

My thoughts are with you both.

Traffic Warden

Dear Koikkeril,
as ditto Brainman, such a blow after such a positive appearring outlook , i wish you all my strength to help you though
take care TW

Tera · Experienced user Joined: 31 Dec 2007 Posts: 68

Koikeril....I am so sorry to hear your news. I hope they can find a way to lessen your husband's pain and that you can make your way home as your husband wishes. My thoughts are with you.

koikkeril · Experienced user Joined: 29 Jul 2007 Posts: 54

Thanks for all your support. I spoke to him before bedtime. He tells me that he doesnt have his pump yet. But he does have morphine on the drip and though he is in pain, he says it is less. He was able to sit up and eat a little. I asked him if they had drugged him up Smile

He told me yes he was on a parachute so I guess he hasn't lost his sense of humour! He is going to try his best to get the food down him to give him the strength to fly home. He told me he will take a pillow and if i get him on the plane, no problem he will just lay in the aisle. Rolling Eyes

So he is seriously getting ready for this trip and with the medical support behind him i will get him back to India. I think now they are trying to control the pain so we will make it OK. So as for me the tears keep rolling Crying or Very sad

and then the disbelief. There is so many worst parts to all this. Watching your loved one in pain, not eating, everything, it just goes on. The first post i put was cancer gone! Some Joke, what an innocent fool i was. I then learnt from brain head NED! I was so convinced by the Doctors he was going to be okay. I even planned our holidays 6 months ahead. I am even learning French medical terms on route. Well its gonna be another long night, thanks for being here with me. I want you to know my husband also listen to me reading your post. His attitude is, when i say why him, he says why not. He told me and the Doctor that he aint scared of dying but scared of the pain and worried for me! He understands there are many of us suffering like him, so he says he accepts his fate. Its just i can't accept him leaving, i cant bear to imagine what life could be like without him Crying or Very sad

I am missing him sometimes already. Am i going crazy here or is this normal? I think also for myself I will feel better to get to India. I wont feel so much on my own. Thank you for reading, God Bless.

Vee Smith · Moderator Joined: 12 Feb 2006 Posts: 557 Location: UK

My heart bleeds for you. Sad

But if distant support is any help, it is here.

pbj11 · Site Admin Joined: 12 May 2007 Posts: 607

Koikkeril,

Your husband sounds like a man of high spirit and strength. The fact that the both of you still have a sense of humor is so good. It will carry you far in this journey. I'm glad you'll be going home for both of your sakes.

Yes, it's true that we begin grieving and missing them before they are even gone. Try to stay in the present and savor all the moments of life you can with him. Big hugs being sent to both of you.

You were never an "innocent fool" -- you have faith and hope and love. That is what marriages are all about. You are a good wife.

Take care, keep us updated, but tell your husband to stay out of the aisle because it won't feel good when the drink cart runs over him. Wink

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

koikkeril · Experienced user Joined: 29 Jul 2007 Posts: 54

Distant support is needed very much. This is now hell, I have no idea how i am managing but i am! I drive the car to the hospital in tears taking his dinner coz he doesn't like hospital food, but bless him today he ate. I phone him when i get back and he sleeps. So far so good another day nearly over and then i thick hell, time slow down, i shouldn't be here but there, i don't know. I am scared out of my head. No control at all, my life is in shambles and he speaks so sweet. I have to be the tower of strength and i don't want to, my husband has always been my pillow and i am not ready. How do you cope? I have read so many post and when it comes to your turn you think you are aware of the situation, but I'm not. When i lost my 13 year old son i collapsed and all this hurt is bringing it all back again. Oh well, my hubby is eating some, that's progress. He has gone to another hospital for 3/4 days to have a morphine implant. So are they good? Does anyone know how can you stage carcinomas meningitis? Anyhow thanks for reading this far and God Bless all you courageous people.

pbj11 · Site Admin Joined: 12 May 2007 Posts: 607

Koikkeril,

Oh sweetie, please slow down a little and take care of yourself. You are running yourself into the ground and won't be good for anyone if something happens to you. Please, please watch your driving --- it is very hard to cry, have your mind pre-occupied, and drive at the same time. Don't put yourself in danger.

Your husband sounds like a Prince. Brings a tear to my eye because my husband just kept getting sweeter and sweeter as he approached the end. I think they are terribly worried about us -- especially when he knows you have already gone through the greatest loss of all -- a child. Oh my dear friend, you have suffered too much in your life.

We will all pray that God will give you the strength to get through this time. It is frightening to see your world spin out of control and try to hang on to stay strong and sane.

Please feel all of us holding your hand and our arms around you giving you hugs of support.

I don't know a thing about morphine pumps -- sorry.

Remember that God will hold you up, but you must also get rest Koikkeril.

We're here whenever you need us.

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 · Experienced user Joined: 29 Jul 2007 Posts: 54

Hi there! The doctors have decided to give him chemo in the spine, just to see if it can extend his life. They say there is no promise it works! They will put a catheter into his spine on Monday so on Tuesday they can give chemo. Anyhow the doctors have discussed about him flying to India, they now think that the flight will be impossible because of the air pressure, taking off and landing so if there is not a lot of improvement with a blast of chemo he will not be going! He seems quiet distressed over this. The thing is he isn't eating enough to fight this much longer, bless him, i am not sure he realises. Apart from all that, the weather has been beautiful here and i am missing him very much even when i am with him. Sometimes I get so angry with all this, it seems so unacceptable that one minute a couple is planning there future retirement and before you know it you are discussing funerals, its unreal! Anyhow I want to thank you for your replies and I am aware I'm not alone. God Bless all of you.

Nurse Penfold · Regular Joined: 15 Mar 2008 Posts: 10

Koikkeril,

Thinking of you both at this hard time in your journey. Please keep fighting for your husband. I managed to get TW home and I get much comfort from that now. TW told me not to be angry as it would be a waste of our precious time together, i'm so glad of that advice now. Before TW passed, your posts touched our hearts, he had great admiration for you. Your situation, as is my beautiful family's, totally not fair Twisted Evil

. My heart breaks every time our children cry for their Daddy, my heart breaks for you also. Stay strong Wink

Big Hugs

koikkeril · Experienced user Joined: 29 Jul 2007 Posts: 54

Nurse Penfold
You are such a wonderful caring person, thank you for your post. It helps me alot! Sometimes I feel I am coping and then it all goes to pieces. I started having a problem with my concentration recently, reading and spelling and talking in riddles. I noticed this whilst being on the site, I will be seeing a doctor about this but I think its stress!! (I hope). I can imagine the broken heart you have, it breaks my heart. There is so much pain in this world thank the Lord you have his children to care for. My husband is Indian so he wanted to die back home, this looks now as if it will be impossible. My husband is suffering in pain, he doesn't complain but i hope that they can get the pain controlled, its this that cracks me up the most. I keep telling him to pick up his bed and go home, just like Jesus said. Well we are in this world and its one way out and we all have to do it. It sounds simple to say but doing is another thing. I hope i am brave for my husband like you are! The worst thing here is being with OUT! family and wondering how and what to do with his body when he has passed over. The stress now is unbearable because i want to keep myself together so as i can do the right thing for him. Sometimes I am in a denial mood, telling myself how stupid i am, we faced this before and we are facing it again and continue to fight. So I am off to hospital to see how he is doing, he can't talk much coz of pain, so today is the first time i have not rushed off, i am having my coffee quietly and composing myself for the next chapter. Luv and hugs to you, you are in my thoughts and prayers. (Added info, see, I missed out the with OUT family, lol)

pbj11 · Site Admin Joined: 12 May 2007 Posts: 607

Hi,

I know you are under some of the most intense stress you will experience in your life. It does make us forgetful and unable to concentrate. I'm still not convinced that I haven't simply flipped over the edge! My doctor attributes all of these symptoms to stress.

It is a battle of emotional ups and downs. They are so hard to control at times, but you are doing fine under circumstances that would test an angel.

I'm sorry to hear your husband is in so much pain. Please push hard for appropriate medicines. People shouldn't have to suffer so much in this day and age.

Just by your presence, he knows how much you love him. It gets so hard when they can't communicate easily anymore.

I also understand the "denial" mode. I was the same way, maybe it is our brain's way of protecting us, but I kept thinking there would be a rally for my husband too.

Sending hugs of support and comfort to you,
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

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