Cancer can steal so much. (ended up a bit long, sorry)

[Kasey]

Sounds like it was a VERY good day. I'm so happy for you!

Kasey

[raneyf]

I feel like Debi. I need to help them hurry up and grow up and function without me. I try to write letters and stuff but it's so hard and feels like I'm giving up. It's also weird in my head - like everyone I love is dying, not me - so I'm grieving for them everyday and my heart is breaking everyday. I'm not withdrawn like you describe - I still talk and communicate, but maybe that's a female thing. I just thought I'd give you some perspective from a patient also. I'm sorry it's so hard. I'm so sorry for all my loved ones and caregivers too.

Raney

[Maryanne]

Hi Nova,

I am sending you out prayers that Harry will snap out of his funk and start to fight. I hoping this little incident will light a spark in him and he will start to communicate.

I will say this. I sorta know what you are going through as Joel had a great positive attitude after the initial shock... after his operation and chemo, which he was doing fine and recuperating he started to regress. I mean really regress. But I just knew in my gut something was just not right as he is a fighter.

And here he was with no motivation, not eating or sleeping well. I actually had to help him to get up from a chair and had to push him to move. He had to shower one day and shave the next, he was too exhausted to do them both together. Anyway, I insisted something was really wrong and his Oncologist nurse suggested they check his T levels (thyroid). Well it was very underactive and that was the cause of it all which they fixed with medication. Next time Harry has blood work have them check his T levels also.

So, I know how you are feeling about his attitude. But what upsets me is that he really has to fight. If not for himself but for all the people who love him. It is just not fair to you, your daughter and your son. Especially your son who gave up something he loved for something he loved even more. What a special boy he is!! I was hoping that that may have sparked something in Harry to change his attitude and make him come around.

You are doing everything you can and you are not giving up. What a wonderful wife you are. I love your motivation... Kudo's to you!!

I am glad he did something today that made him feel like he was still needed and that made him feel good!

I pray for you, Nyra, Welthy and all the others who are fighting for their man even though they seem to be in a very lonely, dark place and have shut you out.

Sorry if this sounds crude but I'm upset that he is still in this pity mode which is of course understandable, but he also has to get into this new normal if not for himself but for all the people that love them.

I am so sorry for everything you are all going through as caretakers. They may eventually lose the war, but they must fight the battle. They are letting this monster of a disease win and that makes me mad.

My heart aches for you and all who are going through this! I pray for change! I pray for miracles as they do happen.

Keep the faith as faith doesn't get you around trouble but helps get you through it.

I know there is medication out there that could certainly help him cope, but as I read he will not take it. But I really hope that you are taking care of yourself also. If you need medication by all means get some!

Warmest hugs,

Maryanne

PS. I don't know your religion, but if you have a member of the clergy you know, maybe they could talk to him.

.

[Nova]

Maryanne,

Thanks so much for the information about the thyroid. I guess I was taking for granted that the doctors were checking everything.(I should have known better!)

What Harry is experiencing sounds a lot like what Joel was feeling - the extreme fatigue, running out of breath while taking a shower, etc.

I actually managed a "chat" with Harry today!

I thought out what to say beforehand, using a lot of the suggestions here. (Thanks guys).

I didn't want to put him on the defensive, or make him think I was complaining, etc.

It ended up pretty good. I explained to him how Jacob and I feel slightly (yeah, right!), deserted by him, and how much we love him and only want to help, but that by detaching himself from us, he was going to cause us to do the same to him, and that's no kind of life for any of us...

He said he didn't realize he'd been so quiet, and he would work on vocalizing his feelings more.

It's a step anyway. (My next course of action will be by Grandma's cast iron skillet! )

Thank you all. I appreciate you!

Nova

[nyka69]

Nova, I'm so glad you guys were able to have a real conversation. It must have been such a relief to feel that connection again.

You are doing such a wonderful job taking care of Harry. I'll keeping praying and sending good vibes your way.

Keep on keeping on.

[Welthy]

Nova,

Good deal! Glad to hear of some improvement in the situation. Under the house??? Holy cow! Hmm... phones and pipes.

The day after I wrote, Tony came downstairs and talked to me more in 10 minutes then the previous 1 1/2 weeks! Go figure...

Hang tough sweetie!

Hugs,

Welthy

Maryanne -- Tony has never spent a moment of self-pity during this whole journey and remains one of the most courageous fighters I've ever seen. He has a mental "toughness" that amazes me. He just can't breathe and that prevents him from talking a lot. I'm thinking that after surgery, 21 thoracenteses, 15 radiations, 46 cycles of chemo in 29 mos., all while the cancer rages on, most people would be pretty pooped out. I get it, don't like it, but get it. I was the one guilty of having a pity moment in my first post in this thread.

[laban]

Grandma's skillet?? I'm pretty sure that would get his attention. I have several here at the house, just let me know if you need another after he tosses it out the door. I'll fed ex it. Just kidding.

I'm just happy to hear you were able to get through that thick skull of his. Good for you.

Hang in there.

[wendyr]

Nova: Grandma's cast iron skillet??? Time to get your own........just kidding

Seriously though, your post hit a nerve with me. When we assume the role of 'caretaker' it begins with treatment plans, medications, diet, appointments, research etc, etc, etc. and all the pro-active stuff.

It it much later that we come to learn what an incredibly lonely job it can be at times.

We want our loved ones to feel better and get better so when at first they withdraw a little we figure, well that's ok, he needs a nap or a rest and we're fine with it. It becomes apparent much later that we spend much of the day on our own, in our own world and they in theirs.

Maurice and I are artists and have worked together day in and day out for 20 years. Earlier this year a friend asked me what was the hardest part of coping with his cancer & my reply was 'loneliness'

Talking to him never did any good as he only got defensive and that made everything worse.

He has recently gone on 2 different medications for depression and I have to say it has made a small difference. One of the meds was just started last week so it's probably too early to see any improvement from that, but I am hopeful that his depression will improve. At least today he went down to the beach to go fishing. He didn't stay very long. "too hot, too buggy, not biting" but at least he made the effort.

Your post has reached a lot of people's hearts and I think by now know that you are not alone. I do wish you and Harry much peace and hope God's love blesses you both.

wendyr

[Welthy]

Nova,

I'm a "rubber mallet to the head" kind of a gal myself.

It's the kinder, gentler me.

Welthy

[nonni]

Gosh Nova...I just don't know what to say...except my heart breaks for you and Harry and your wonderful young son....How proud you must be of him...

Like Debi...I don't often come to this forum because I am a survivor and not a caretaker...your subject line caught my attention...and I'm glad it did...No 'pun' intended...just felt like I didn't have anything to add to the threads....but I could tell you this...EVERY NITE...I pray for all and especially LC patients AND their caretakers...and tonight I will be praying for you and Harry..

I think you have gotten some wonderful advice and happy you are following thru with some of them...Please leave out the skillet thou I wish Harry would take some Zanax...they have been my lifesaver's...I don't think I will ever be without them ...they really do take the edge off...addictive or not...who cares...I will be taking them forever anyway...

I will be keeping you both along with your family in my prayers and hope things get better all the way around and sooo happy you are NOT giving up and you have to convince Harry not to either...much peace to both of you....hugs..Nonni/Pam

[Nova]

I'm so thankful for you guys....

I was feeling horrible the day I wrote that post. Totally desperate for any ideas, and thinking that I must be doing something completely wrong, for my husband to be feeling and behaving like he was.

It's a tiny bit better now. Harry seems to be trying to carry on a few conversations, and even talked about when he might be able to go back to work, (which is his goal-he loves his job).

I couldn't help but laugh yesterday when we were having our little discussion. After I told him that Jacob and I "missed him", (even though he was sitting in the same room), he looked at me and said "I don't like it when you guys don't talk to me very much"!!!! LOL!

I quietly responded: "THAT'S THE WHOLE POINT OF THIS CONVERSATION, YOU BIG DUMMY"

(Time to get that skillet out!) We both ended up laughing! That was such a nice sound... It's been too long since we've had laughter here.

"Anyhoo", I want to thank all of you.

What a blessing you all are to me.

Take care of yourselves, and keep those skillets handy! (I've got my Grandma's entire set of cast iron cookware, so if anyone needs to borrow one, PM either Laurie or I)

Love,

Nova

PS - to the survivors that responded.

An especially big "thank you" to you . You're the key to we "Caregivers" knowing how to help! We can't understand what it's like. (And I don't like the word "Caregiver", so switch that to "Those of us who love you very much" instead!)

[Maryanne]

Thanks for the update Nova,

I have a strong feeling little by little he will come around as we can see a little spark starting there.

The skillet thing reminds me of a song but with your words.... old Beatles song.

BANG BANG NOVA TOOK A SKILLET

AND BANG BANG ON HIS HEAD (lol)

It's good that we can joke.

But on a serious note, if he is talking about going back to work, the that is such a positive sign.

Still continue to send prayers...

Maryanne

[ztweb]

Oh Nova,

I am so, so, sorry. I feel terrible, because I think I know how you feel, and I remember this being so, so hard.

My dad was the SAME way. He would sit and stare at the birds, and if he did speak it was only about what the birds were doing...nothing else.

Don from Texas, also diagnosed with SCLC, SVC, (I haven't seen him on here much lately) talked to me on the phone one time, and told me that there was NO WAY I could ever imagine what was going through my dad's head every day. He said that he remembered that even looking at his kids or his wife was terrible, because it just caused pain. At night he would lie awake in bed, staring at the ceiling and wondering what tomorrow would bring. My dad was the same. Don said we needed to do whatever we could to get Dad on meds for depression. Dad wanted nothing to do with it, until we told him that it would help him sleep.

So....all along dad's meds were for sleep, as far as he was concerned, but it did help to get him out of his chair, and back into the world.

Please know we are here for you, and for your husband. Cancer robs us of normal, as that will never be...but a new normal will fill its place, and I pray that you find that normal to be if not comfortable, at least bearable, as right now this is tearing you apart.

Blessings and Prayer,

Jen