Holding Your Nerve

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January 31, 2013 at 11:23 am  #1253218    
catdander forum moderator
catdander forum moderator

Ever since I first read the phrase “holding my nerve” I’ve thought it the best term for what we do.

I know everyone would say oh of coarse lovers and caregivers feel the same, but lets be clear. We don’t. From the beginning of the dx stage 4 incurable nsclc D (my husband) and I have moved in very different worlds. His preparing to die and mine preparing to help him and move forward after his death. As it turns out there’s an awful lot of living that is happening between the dx and the death and we’re having a hell of a time living.

I found the term holding my nerve to be the best explanation of what he and I do. Obviously not the only one but it really cuts it down to the basics. Certain Spring uses it to help others understand the god awful torturous hell any of us can move to if we don’t keep it together.

We try from time to time to start one of these conversations but they too often peter out before they get started. I’m starting one now after reading CS’s note in another thread. She expressed the same need and not for the first time to talk openly about living with lung cancer.

Hopefully I’ll get to explain more of my crazy new world with some of you.

January 31, 2013 at 11:35 am  #1253221    

double trouble

Yeah. Certain Spring was trying to help me on that other thread. I’ve cut and pasted my reply:

“I’m scared out of my ever lovin’ mind. Especially since my onc shortened my prognosis from 18 to 24 months to 6 to 12 months. (I have to add that he meant if we did nothing… no treatment whatsoever). I feel like I have to hurry up and do something, but I don’t know what! And every new symptom, side effect or finding sends me into the stratosphere. (rhymes with fear)”

Sorry for the redundancy to anyone who has read both threads, but I thought that Janine had started something good here, so I wanted my reply to be here too.

Debra

January 31, 2013 at 1:53 pm  #1253236    

certain spring

Thanks so much Janine and Debra. I generally feel I can’t post in this vein in case it upsets someone, be they a patient or a partner or a caregiver. So, with that health warning…
Occasionally I feel I am becoming completely unhinged. We just bought a house – a perfectly normal thing to do, and I love the house, but it is wildly impractical for anyone inclined to breathlessness as there are lots of stairs. So it brings up all kinds of fears: is this where I’m going to die? I can manage now but what about when I get worse? will I have to go to a hospice (here in Britain they are actual institutions/buildings) sooner because of the house we’ve chosen? will I fall down the stairs and break my neck? (I have brain mets in the cerebellum.) As if to underline the point, someone we know just died of lung cancer that had progressed to her bones and put her in a wheelchair. I spent about a week thinking “What have I done?”
However, it is my great good fortune to be married to an amazingly nice man with whom I can talk freely. So we sat down and I said how afraid I was of having to leave him to go into a hospice because of the house. Since he is also a very practical person, we went through how we could put in plumbing for a bathroom to make it possible for me to live on one floor. It was unbelievably consoling to have articulated these fears and to have talked to him about them. I now feel much more comfortable and able to take pleasure in the house.
What these discussions cost him I do not know. That is the other side of the equation, and I sometimes think I should be looking after him better – protecting him in some way. But I can’t protect him, any more than I can protect myself. I try and make sure that he/we are seeing his friends, that he is in touch with his family, that he goes mountain climbing and eats enough vegetables. Beyond that, I don’t know what I can do except to try a bit harder not be moody/stroppy, which happens rather too often.


49-year-old non-smoker, dx stage IV NSCLC May 2010 (squamous tumour of the left lung with multiple brain metastases). Radiotherapy to chest and brain; progressed through two cycles carbo/gemcitabine. Repeated lung collapses; pneumonia in collapsed lung, Nov 2010; bronchial stent placed, Dec 2010. Declined second-line Taxotere. Mutation testing Feb 2011, surprise EGFR exon deletion 19. Started Tarceva (150mg), Feb 2011. Progression in liver and elsewhere, May 2013.

January 31, 2013 at 3:12 pm  #1253249    
catdander forum moderator
catdander forum moderator

I’m so happy to hear about the house and the consoling plan about putting in plumbing on the main ? floor. When the steam of moving has settled down maybe he and you can get to work on putting the plumbing in so it’s there when you need it.

I must admit I didn’t realize the idea of horror people who are dying sooner than later must face and how often it creeps up; or should I say how often it isn’t being held by sheer nerve. I see it in D and I hear it here online (Debra’s scared out of her ever lovin’ mind, NED used the term horror). It’s not as bad on the other side, being a loved one but I hate it for all of you and for D and that is heartbreaking in it’s own way.

CS it sounds like you are being a wonderful wife and doing everything you can. I can’t imagine your husband wanting you to hold back and I’m sure he sees all the things you do and cherishes them. I know I do or try to with D.

CS, are those brain mets in your cerebellum new or have they been there and behaving from the beginning? If I may ask.

I wonder how you make the transition from dying in a few weeks or months to living for a few years.

January 31, 2013 at 10:56 pm  #1253268    

gn21

Most of the time I am just plain scared. Not of the now, but of the future. Will I get brain mets and become non functional? Will it move to bones and cause pain we can’t manage? What does the Beast have planned for me?

But at the same time I am hopeful and enjoying life. I have had 4 good years, managing (sometimes just) the side effects of the various treatments. Some have been dreadful but they are worse looking back than they were at the time – on a day to day basis we all just do it.

Holding my nerve – that sounds about right!

Certain Spring – I reckon it’s great you have had the conversation and you know you have a solution. I must admit I have never thought about what such conversations cost our partners. But like you I do the things I can do for him. He too is scared of the future and of being alone in his early 60s. I just tell him I’m sure there is some floozy just waiting for him, and my superannuation! Maybe I need to be spending more money!

Gail

February 1, 2013 at 1:21 am  #1253270    

certain spring

One of the wise lung nurses said to me (in relation to the worry about being in a wheelchair), “That may never happen.” And she’s right – there are so many worries that they aren’t all going to be proved true. So Gail, you may never get brain mets or be in terrible pain. That doesn’t have to happen. A great release for me was realising that I was quite likely to die fairly suddenly – from pneumonia or a pulmonary embolism, say, rather than as part of an agonising decline. The friend I mentioned seems to have died very peacefully, at home with her husband and son. It sounds as if her lungs just packed up.
I also cheered up once I had experienced morphine at first hand!


49-year-old non-smoker, dx stage IV NSCLC May 2010 (squamous tumour of the left lung with multiple brain metastases). Radiotherapy to chest and brain; progressed through two cycles carbo/gemcitabine. Repeated lung collapses; pneumonia in collapsed lung, Nov 2010; bronchial stent placed, Dec 2010. Declined second-line Taxotere. Mutation testing Feb 2011, surprise EGFR exon deletion 19. Started Tarceva (150mg), Feb 2011. Progression in liver and elsewhere, May 2013.

February 1, 2013 at 4:31 am  #1253272    

double trouble

I worry that tumor will invade the pulmonary artery and I will bleed out. I know it would be fast, which is good, but I wonder if I would be spitting up blood everywhere, which would be an awful image for my family to have in their heads. And quite a mess to have to clean up. I really don’t know what happens, but I do know that my tumor is attached to the artery and growing.

And the idea of air hunger scares me. So many scenarios play out in my head, some good, most frightening, all possible. I guess we all wonder how we will die. It is literally staring us in the face, so it’s hard not to think about it.

My mom got very disoriented, which was calmed with morphine. She was not alert, but seemed to be aware, and very sad. I think she cried all night long her last night, but she was very dehydrated so there were no tears. Just moaning. I know she didn’t want to die. Her actual passing was uneventful. I told her it was okay to give in to it, that there was nothing the doctors could do to bring her back, and she seemed to calm down, and passed soon after. Just slowed breathing, until finally it stopped. She didn’t appear to be in any distress in the end.

My best friend, who had ovarian cancer, had the surge. The night before she passed she got up and had a bath, cooked dinner, to which she had invited certain selected people, and seemed her old self. The next day she declined throughout the day, breathing slowed until it stopped. The only thing that still disturbs me is that she was drooling constantly and it seemed she was drowning in her own fluids, but hospice was there keeping her very medicated and she was in no apparent distress. It was sad to see her son keep wiping it away. Tender, and very sad. I miss her.

It’s hard to be upbeat for family and friends all the time, but they really can’t deal with the reality, so I try to act like cancer is not happening. The only one I can really talk to is my X-DIL Lisa, who starts crying at times, but is always there.

February 1, 2013 at 10:52 am  #1253285    

certain spring

Your ex daughter-in-law sounds wonderful. Kudos to her.
Sometimes the reality is less awful than the imagining. It might be worth asking your doctors what happens if the tumour invades the pulmonary artery. Maybe it causes a heart attack – I don’t know but I would ask if it was worrying me.
I’m hoping I will know very little about it. My main worry at the moment is that my husband/brothers won’t be there, because my husband is often away and the brother who lives nearest has a tendency to switch his phone off in times of crisis.


49-year-old non-smoker, dx stage IV NSCLC May 2010 (squamous tumour of the left lung with multiple brain metastases). Radiotherapy to chest and brain; progressed through two cycles carbo/gemcitabine. Repeated lung collapses; pneumonia in collapsed lung, Nov 2010; bronchial stent placed, Dec 2010. Declined second-line Taxotere. Mutation testing Feb 2011, surprise EGFR exon deletion 19. Started Tarceva (150mg), Feb 2011. Progression in liver and elsewhere, May 2013.

February 1, 2013 at 4:15 pm  #1253292    
Dr West
Dr West

Though some people have a more sudden collapse and others decline more gradually, the clear majority don’t suffer from agonizing air hunger or pain or cough or other “suffering” symptoms. The gradual process is far more often a gradual weight loss, fatigue, sleepiness, and fade out.

Of course, none of us can predict what will happen for any one person, but I think there’s good reason to NOT presume that things will be awful, especially if hospice folks are involved, since they can often be available to help guide people about what’s expected and provide various meds and equipment to help minimize the symptoms.

And those who follow this site know I’m no Polyanna, so I think this is a realistic expectation that most people don’t need to suffer greatly, especially if they accept help.

-Dr. West

February 1, 2013 at 7:18 pm  #1253297    

double trouble

Thank you Dr. West for those very comforting, and fear reducing words. I will read this comment often.
Debra

February 2, 2013 at 10:55 am  #1253318    

aunttootsie001

I want to believe or I guess I should say I Do believe What Dr. West is saying! It’s a bit hard for me because my husband doesn’t want to discuss the future in that sense! I feel I’m going to be around for quit a while. That doesn’t mean I don’t have those moment’s where I worry what is going to happen. I have been trying to write Letters to each of my closest Loved ones, it’s not easy! Those are the Days I get negative. Most the time I try to stay positive. So here’s to God giving all of us a break! Love you All! Lorrie!

February 2, 2013 at 3:03 pm  #1253331    

gn21

More thanks to Dr West for reassuring words. I guess when we have lung cancer we focus on related ways of dying, but in reality there are a heap of options, and hopefully, in most cases, they are acceptable.

I shareDouble Troubles fear of air hunger – that is extremely scary. But will just have to keep fingers crossed.

I am also mindful about how many out there are suffering in far greater ways that I am. Those in war torn countries, those witout access to food, water, medical help. Those on the receiving end of violence and poverty. Sometimes reminds me that I am facing a first world worry, with wonderful access to medical help, am financially secure, in a loving relationship, and living a damn fine life!

So for the moment I will set the worry of dying aside, and concentrate on the living

Gail

February 2, 2013 at 4:28 pm  #1253333    

double trouble

Well said Gail. Thank you, and I agree. A dose of the nightly world news usually snaps me out of it too.
Debra

February 2, 2013 at 6:43 pm  #1253335    

aunttootsie001

I too worry about Air Hunger. My mother had Lou Gerhrigs. I wasn’t there when she passed but from what I was told she was definitely suffering from Air Hunger. And it is embedded in my Brain! Which makes me very Sad!

February 3, 2013 at 4:18 am  #1253350    

certain spring

Just wondering if people know that Dr Harman did a post on this:

http://cancergrace.org/cancer-treatments/2012/02/17/dyspnea/

Because of where my tumour is, I’ve had some bad moments with what I would call respiratory distress (hadn’t come across the term “air hunger” before). But morphine is a wonderful thing.
I think that sometimes the laboured breathing that people will have observed in a loved one shortly before death is what Dr West describes in this post – it is part of the dying process (“agonal breathing”) and doesn’t mean that someone is in great distress. I certainly remember this with my mother.

http://cancergrace.org/cancer-treatments/2011/05/06/faq-dying-process/

This is a great post by the way, though obviously you have to be in the right frame of mind to read it.


49-year-old non-smoker, dx stage IV NSCLC May 2010 (squamous tumour of the left lung with multiple brain metastases). Radiotherapy to chest and brain; progressed through two cycles carbo/gemcitabine. Repeated lung collapses; pneumonia in collapsed lung, Nov 2010; bronchial stent placed, Dec 2010. Declined second-line Taxotere. Mutation testing Feb 2011, surprise EGFR exon deletion 19. Started Tarceva (150mg), Feb 2011. Progression in liver and elsewhere, May 2013.

February 3, 2013 at 9:32 am  #1253354    

Sherry

Aunttootsie, my mother had ALS as well and I was there when she passed. She did suffer a little at the end, but we were niave then and didn’t know to call in hospice. I lost my dad to lung cancer and he did not suffer at all. It was very peaceful and much like Dr. West described.

For myself, I’m not so much afraid of how I’m going to die, but I torture myself about what I’m leaving behind. I can’t watch TV shows that show moms and daughters buying wedding gowns. I can’t bear the thought of the pain my daughter will be going thru without me being there. I know that might sound silly, but I have lost a lot of sleep over her future wedding.


ME: Diagnosed Stage 1A in July 09, ULL, no further treatment. Diagnosed with breast cancer in Feb. 11, again Stage 1. All scans were clear until headaches started in April 2012. In July 2012 was diagnosed with a metastatic brain tumor from lung, surgically removed and treated with cyberknife. Now on Tarceva. Clear scans to date. DAD: Diagnosed stage IV in Dec. 09, was on Tarceva until April 2012, then Alimta once every 3 weeks. November 27, 2012 entered the kingdom of Heaven.

February 4, 2013 at 9:51 am  #1253391    

certain spring

It doesn’t sound silly. I missed my mother dreadfully in the run-up to my wedding, when she’d been dead for eight years. Weddings are such symbolic occasions. How old is your daughter now?
My mother and I had a strange conversation shortly before she died about what I would do if I had a million pounds. It wasn’t really about money, it was about dreams and wishes – I think she was trying to find out what I wanted from life, what was important to me.
It is about not knowing how the story ends – being cut off just when it’s getting interesting. I don’t have children but I look at my nieces and nephew and wonder what’s going to happen to them. So I have an inkling of how you might feel.


49-year-old non-smoker, dx stage IV NSCLC May 2010 (squamous tumour of the left lung with multiple brain metastases). Radiotherapy to chest and brain; progressed through two cycles carbo/gemcitabine. Repeated lung collapses; pneumonia in collapsed lung, Nov 2010; bronchial stent placed, Dec 2010. Declined second-line Taxotere. Mutation testing Feb 2011, surprise EGFR exon deletion 19. Started Tarceva (150mg), Feb 2011. Progression in liver and elsewhere, May 2013.

February 4, 2013 at 10:54 am  #1253393    

Sherry

My daughter is 16. She and I are very close and have had some of our best times and best talks while shopping. She always says I’m the only one she can shop with. We are in the process of getting her prom gown for this year and are having a blast. Obviously no one wants to leave their children or spouse behind, but that is what bothers me most. I’m selfish – I want to be at their weddings, I want to spoil my grandchildren, and I want to grow old with my husband. I know the future is not my choice, but this is what’s hardest for me to deal with.


ME: Diagnosed Stage 1A in July 09, ULL, no further treatment. Diagnosed with breast cancer in Feb. 11, again Stage 1. All scans were clear until headaches started in April 2012. In July 2012 was diagnosed with a metastatic brain tumor from lung, surgically removed and treated with cyberknife. Now on Tarceva. Clear scans to date. DAD: Diagnosed stage IV in Dec. 09, was on Tarceva until April 2012, then Alimta once every 3 weeks. November 27, 2012 entered the kingdom of Heaven.

February 4, 2013 at 2:58 pm  #1253402    

certain spring

She’ll miss you when she buys her wedding dress one day, and you’ll be there in her heart. In the meantime you are building up a store of good memories for her future – the best kind of investment.


49-year-old non-smoker, dx stage IV NSCLC May 2010 (squamous tumour of the left lung with multiple brain metastases). Radiotherapy to chest and brain; progressed through two cycles carbo/gemcitabine. Repeated lung collapses; pneumonia in collapsed lung, Nov 2010; bronchial stent placed, Dec 2010. Declined second-line Taxotere. Mutation testing Feb 2011, surprise EGFR exon deletion 19. Started Tarceva (150mg), Feb 2011. Progression in liver and elsewhere, May 2013.

February 7, 2013 at 8:22 am  #1253511    

Sherry

Thank you. I hope her store of good memories is overflowing.


ME: Diagnosed Stage 1A in July 09, ULL, no further treatment. Diagnosed with breast cancer in Feb. 11, again Stage 1. All scans were clear until headaches started in April 2012. In July 2012 was diagnosed with a metastatic brain tumor from lung, surgically removed and treated with cyberknife. Now on Tarceva. Clear scans to date. DAD: Diagnosed stage IV in Dec. 09, was on Tarceva until April 2012, then Alimta once every 3 weeks. November 27, 2012 entered the kingdom of Heaven.

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