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Post NED letdown

bonefamily's picture
bonefamily
Posts: 27
Joined: May 2012

It's been a very emotional few days for Nelson. The news that the MRI was clear is an amazing blessing. We are so happy the treatment worked! But he has been cycling between joy that the cancer is dead and sadness because he still feels soooo bad. He cries frequently and is just a bundle of confused emotions.

I also go back to work next week after almost three months home caring for him. He's nervous, sad and afraid. He can't really verbalized exactly what it is that he is afraid of, but I feel sure he is mainly insecure in his ability to care for himself totally.

Did anyone else cycle through these mixed emotions after getting the NED call? Any tips from the patients on how your caregiver helped ease you through the change of being alone while they worked?

Thank you for being here. I love the community here. It's wonderful not being 'alone' in this battle.

katenorwood
Posts: 1808
Joined: May 2012

Bonefamily,
Emotions run high for any and all progress through this trip. Do you have a back up plan ? Work is important...and a neccessity. Nelson needs to feel secure that if needed, help would be in place. Check through the local CSA, or even your hospital for suggestions. There are alot of good tools to use. You yourself need to know things are running smoothly, or it will drive you crazy. Is there other family or friends that can step up to help ? Cycling through this bus ride we are on some days seem endless. But as you can see, others will post positives for you that it is possible to get the best normal you can. Best to both of you ! Katie

phrannie51's picture
phrannie51
Posts: 3601
Joined: Mar 2012

Emotions are all over the place from beginning to end in this disease. I think back on what a panic I was in when Greg had to go to Seattle for his own medical issues when I still had 3 radiations to do...I was anxiety city! Scared even tho my sisters would be taking me to radiaiton and bringing me home (which is what I really needed)...but I still felt very anxious about BEING alone. The worst of the anxiety was over the first day...nothing happened that I couldn't handle, I slept most of the time...It was just something else to get used to.

Can you run home for lunch during the first few days, to check on him? To let him get used to you going back to work? Or as Katie suggested, possibley another family member could check on him half way thru the day?

p

bonefamily's picture
bonefamily
Posts: 27
Joined: May 2012

I'm an RN, so I work 12hr shifts with a 45 min drive each way. My day is about 15 hours total away from home. Roughly 5:30-8:30. My neighbor is like family and works close by. She can come anytime. I think I will work two days this week and from then on my schedule is three days a week. Better than every day, but they are LONG days.

He usually sleeps til about 11 and our daughter (12 yrs old and AWESOME help) gets home from school about 3:30. I know in my head he will be fine. The first day will be the worst. Just the unknown. We can do this, it is just a lot of change at once.

He can call me anytime and my boss knows how hard things have been. If I have to leave if he panics, so be it. I told him last night that I am employable anywhere. If he wants to move closer to his family or mine, we can. I want him to know that he is most important right now and is in control. This is the battle of both our lives and that is our focus. I hope that helps him feel more powerful and not guilty for the stress the cancer causes. I know that is part of his anxiety too. All the changes in Hannah and my life along with his.

We see the psychologist again Thursday and maybe it is time to discuss the depression. He has had so many other problems going on and so much medication, that any additional meds for depression have been pushed to the back burner for now. He is taking much less now, so I hope they will consider an antidepressant. I am certain he needs it.

Thank you all!
Kim

luvofmylif
Posts: 344
Joined: Sep 2012

Even though I am just the caregiver I have panic attacks and anxiety when I have to leave my husband to go to work. Wish I could take a Leave of Absence but now we need my income more then ever and will need my insurance soon when his runs out in January. I never in all my life have had experience with this issure before. I have been blindsided by everything and cry so easily. I think it's fear because I know I can't control any of this and don't want to lose my husband. I feel safe when I am at home with him but when I am around people , such as at work, my anxiety rises to the point where I can't tolerate people asking how he is. I just say "he's fine" because they can't know what this is like for him...it would take to long to tell them and they probably don't care anyway.

So, while I am not the one with the cancer as your husband is, I understand the panic attacks. For me, it's loss of control probably and just plain and simple sadness. Sadness that the old life is gone for ever.

Tim6003's picture
Tim6003
Posts: 1490
Joined: Nov 2011

the first month I never got out of bed...when I got the NED on my 2nd CT scan (not the fist PET 3 month after, though they felt my PET was good)I just remember feeling so lost for several months....looking over my shoulder...realizing what I just went through and put my family through....now suddenly after being fully into battle during tx and seeing lots of people daily...your alone. It is hard and I think it truly is normal.

I encourage you (if you don't alredy) have your husband get on this site and chat...talk to others who have walked in his shoes...I did not really utiilize this site until I believe a full month after my treatments...if then....oh how I wish I had of sooner.

I know that's probably that last thing he feels like doing....I kept thinking to myself (even after the 2nd scan which was 5 months after tx...why do I feel so bad still???

The body takes a serious hit...not telling you anything you don't know ...that voice on your shoulder is always reminding you about the "c" and you feel every twinge of pain...the lack of enery and then suddenly being cut off from this huge team of docs and support I think is the hardest....not that I would dare compare myself to a combat veteran...but in a small way can you imagine those that fought in the thickest, dirtiest part of war, seeing fellow soldiers die, fighting for your life for months on end and then coming back and walking arounda a safe American Mall at Christmas time....I think I can see just a little bit of how they might of felt...but no disrespect towards them...you get what I am trying to say..

Tell him to pm or call me or get on the board and chat anytime (again, if he does not already)....I think it might help.

Best,

Tim

cureitall66's picture
cureitall66
Posts: 837
Joined: Aug 2012

Tim,

That was very thoughtful of you to share those feelings with us. Caregivers have such a hard time with accepting all of this, being the ROCK to our loved one, and trying to imagine what you are going through. Your words really put things in perspective....of what's to come. You know we are dealing with some depression on our end here. He just got a "feel good" med to start taking the edge off...sure hope this helps.

I guess we know all of this is just human nature with our feelings for ALL involved. God grant us all peace throughout our journeys in life..

~C

George_Baltimore's picture
George_Baltimore
Posts: 303
Joined: Jun 2009

I was responding to luvofmylif's post when somehow my post dropped below two posters when I pushed the post comment button. Anyhow, the following was in response to her post.

Your last sentence wraps it up for me. I find myself on the verge of tears sometimes when I think back over my life. I also feel sorry for my nephews that have to grow up in the United States now. I just can't believe how much it has changed for the worse in my lifetime.

Greend's picture
Greend
Posts: 679
Joined: Feb 2010

I hear you.

CivilMatt's picture
CivilMatt
Posts: 2809
Joined: May 2012

Bonefamily,

Try a dry run while you are still at home and see where he has trouble and work on those areas. I let my wife do everything, but pee for me. It felt good to start caring for myself and give her a break. Now she mostly just eats my DQ Blizzards as ice-cream is having an up hill battle with the old taste buds.

Good Luck!

Matt

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

I also had "strange days" after treatment ended. During treatment, it's like you're in some sort of twilight zone, with several groups of people guiding and instructing you on your way. Once treatment's done, your contact with people guiding you is greatly reduced. The only problem is, you're still in the twilight zone for a while, and now you're losing a lot of support (OK - you're not losing it, but it feels that way, since you're not continuously shuffling to appointments). So, instead of being very busy with appointments, treatment sessions, and timed side effects meds, you have some time on your hands. Sometimes time is not your friend. Instead of having a lot of your thoughts focusing on how you're withstanding treatment and how you're battling side effects, you feel odd that you're not fighting the cancer as strongly as you were. It's bizarre that you expected to start feeling much better soon after the last treatment session, but chances are you didn't see that improvement as soon as you'd thought you would. Weird that people around you are relieved you've made it through, and now you got clean scans, so that means you're fine, so the whole thing is only in the past to them. Only you know it's NOT in the past - it's just behind your shoulder, where you can't see it, but you know it's there. You don't want to be obsessed with wondering if the cancer will return, or if you'll develop one of the horrible delayed reactions to treatment, but sometimes can't help yourself. And you can't share with others, because they may think you're being dramatic, or silly, or borrowing trouble - or because you don't want to foist your negative feelings onto them, and steal their happiness.

I didn't have a caregiver, so I can't really say what I think the best way would be to wean myself off of needing a caregiver. I like the idea of running through practice runs for time without the primary caregiver. Then, you can all feel more comfortable with his ability to make it through the time alone. Hope it's a great success.

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

I don't know what I can say that hasn't already been said. This treatment is hell and while going thru it you think it will never end. When it does end you still feel so badly that you think you'll never feel normal again. When you feel normal again you realize it's a new normal. It seems as nothing is straight forward. You want to remain positive but there's that little voice in the back of your head that keeps toying with you. I promise you tho, it all gets better. He will be able to make it on his own for a few hours during the day for the few days you work. My husband went to work m-th each week and when I was finished with treatment he would just text me several times thru the day to check on me. I also have neighbors whom I could call if I really needed something. I actually think him being at work helped me to help myself. I still did a lot of sleeping but it also meant getting my own drinks or medicine or whatever. Kinda forced me to be a big girl :-)
It shows what a great caregiver you are and have been to show such worry. I really think all will be well. Just arrange to have a few people on the sidelines if he should need help. Wish we all lived closer to each other so we could be there to help out.
Take good care,
Billie

bonefamily's picture
bonefamily
Posts: 27
Joined: May 2012

I got my schedule for the week, and feel a bit better. I work tomorrow (Tuesday), Friday and Saturday.
He has been doing his own tube feeds for awhile, just needs prompting to actually do it. He has zero appetite and just forgets to eat. I have a spreadsheet of med, food, fluids by time that we have been using to keep everything straight. My neighbor works in town and can come check on him at lunch or whenever he needs help. A good friend is an EMT and also works just down the street and can be here in a flash. And Hannah gets home from school at 3:30.

I think I have all systems in place for a successful transition but I know we will both be a wreck tomorrow.

If he feels up to it tonight, we will go to the HNC support meeting at Gilda's Club. He needs to see people that have been through it.

I'll let you know how it goes! Thank you for the wonderful support!

QuisoNeo's picture
QuisoNeo
Posts: 18
Joined: Jan 2012

My boyfriend finished radiation and chemo last January for laryngeal cancer and I know what you're talking about. In hindsight I think what some of it is is that when you (both) are in the middle of it, you are in survival mode. Neither of you have time really to process the emotional part of it all. You just take one step at a time and then the next one. Also, you think that because treatment is over, it should be easier and immediately better. Well, it takes months for the side effects to wear off. I remember thinking he would never stop choking on phlegm. I spent more nights after treatment laying in bed making sure he was still breathing than I did when he was in treatment. He has to go through the process of emotionally (and physically) working through what he's just been through. So it's not like a great scan just makes the world look bright and sunny immediately. There is a gap I think between being able to come out of the shock of what he's just survived and being able to grasp that he is okay. Time and lots of patience. I remember when I first went back to work and how worried I was. He became more and more independent, the more I helped him feel like he was capable and trusted him to be able to do it for himself. And he felt better for it emotionally too. Good luck and hang in there. It's not easy, but it will get better.

bonefamily's picture
bonefamily
Posts: 27
Joined: May 2012

It was a very emotional day for both of us, but we made it through with no mishaps or major problems.

Poor guy was worn out by the time I got home, he was asleep in about 15 min! He feels better about things now and know he CAN do this.

My goodness, I had forgotten how tough 12hr shifts are. Especially since they are more like 15hrs with driving and never leaving on time. Somebody come rub my feet....

Thanks for the love everyone!

davkel's picture
davkel
Posts: 20
Joined: Apr 2012

Just to let you know you are not alone. I've had some serious ups and downs since my own end of treatments and hearing that I'm also NED. I've been clean since May and I still go thru these tough emotions. It's like, ok, cancer is gone I should be ok by now. It seems like it take forever for the pain to go away, the radiation to cycle out of my body, and to get back to swallowing normally. My wife styled home of take care of me for almost a year now and her going back to work turns out to be a blessing. It's helping me get back to some self sufficiency and get back some of my self worth. Stick with it, everyone told me it was a long hard road but it will get better SLOWLY! They were right! Praying for you!

For tips, my wife made me some meals to have ready for when she was gone in case I didn't have enough energy to cook, we also talked to our neighbor to check in every now and then. I also got a puppy. It helped me get up and about...taking her for walks, letting her out for potty breaks and training her...I thought at the time that it was too early, but it turned out for the best for me...I started taking her for walks and she was there by my side with unconditional love and company while I was alone.

Hope some of this helps, good luck and may God bless you both.

phrannie51's picture
phrannie51
Posts: 3601
Joined: Mar 2012

but I did the same thing before treatments were over. Having something to focus on, a being who needed ME to guide her, did get me up and moving everyday. I had help from my husband, but I too found that this pup got me out into the sunshine and walking further distances everyday...building strenth physically, while building strength emotionally by having something that had to be done even when I'd rather sit in a chair and stare at the TV, or nap.

p

Crazymom's picture
Crazymom
Posts: 287
Joined: Nov 2011

Hi...I got on antidepressants about a month ago. I am 9 months post radiation. I was ok most of the time, but periodically had meltdowns. My GP told me to get on them for six months and then we will see how I am. I got on them after my last baby for 9 months and then got off without any difficulty. It helped me then and is helping me now. I have not had any meltdowns or panic since I got back on them about a month ago. Hang in there. It gets better. Ann

Mikemetz's picture
Mikemetz
Posts: 331
Joined: Nov 2011

We all know what a "Bucket List" is, thanks to that movie. What I did after my treatments ended was to start a "Cancer Revenge List", made up of things I wanted to get back in my life that the disease and the treatments took away. It was a "progressive" list, starting with very simple things that I could do soon (like take short walks with my wife), to more difficult things that would take a while to work up to (like working full days again). The sense of accomplishment when I crossed things off the list helped me to get through the roller coaster days between the first NED scan and my new-normal.

This HNC gig is a long-term thing--forever for some people. Patients and caregivers need to understand that and be ready for all the different stages they will be going through. Of course we all want to be NED, but the battle is far from over when the first one happens. Recognizing that fact can help us cope with the ups and downs that will surely happen for a long time coming.

Mike

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