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Getting through the days until first scan.....

cureitall66's picture
cureitall66
Posts: 879
Joined: Aug 2012

Hi All,

Just wondering how some of you that have been through your treatment got through your "dark days" after tx to your scan? As a caregiver, I'm finding it a hard to help get him through these dark days. And when I say dark, I literally mean the dark in the sense that he is becoming scared of the dark. Does not like to look outside at the dark without getting emotional. He even sleeps with a night light. The emotions are running high for him. We're only a little over a week out of treatment, so the pain and healing physically is still going on. The doctors told him yesterday that they want him to get swallowing...this is also hard on him. He barely gets some ginger ale (without fizz) down without pain. He can't stand to look at himself in the mirror and is emotional over his looks...and looking aged.

I know this is just part of the process and we'll get through it a day at a time. Just wondering how some of you got through those days.

As always, thanks for your advice and support.

~C

phrannie51's picture
phrannie51
Posts: 3849
Joined: Mar 2012

the first 2 to 3 weeks seem to be worse for so many on here (worse than during treatment), that getting some ginerale down during this time is doing good!! The guarentee is...it's going to get better and better...slowly and surely.

The looking old part is also temporary. Every time I'd look into the mirror, it amazed me how I'd gone from a perky 62, to 80 in such a short time. Once he starts eating some real food, and putting on a little weight, he'll see his old self emerge. The sunken cheeks and eyes will fill out once again. It just takes a little time.

Was he afraid of the dark when he was a kid? I'm just wondering if some of his inner-child is peaking thru...something coming back to haunt him from his past...the powerlessness of being a child in the dark and terrified.

Right now, his 3 month scan is way out there (well, as much as it can be at a certain age...time flys even if we're not having fun)...is he already worrying about about it?

Tell him that month from now, he's going to be seeing some of the improvements that we all talk about...it's just a slow recovery is all...

p

cureitall66's picture
cureitall66
Posts: 879
Joined: Aug 2012

As always you are wonderful with your words. You were my first responder back in August when we got our news.

You know, I never thought about the inner-chld speaking thru from his past. I just can't get over this fear he has with it. Don't know if it's because he's feeling so gloom and the dark makes it worse? Just trying to be understanding and make suggestions...like the night light.

Actually he hasn't brought up the scan yet. But, that doesn't mean he's not thinking about it right now and protecting the rest of us from more of his fears. He's a very protective person and I know he's holding in more than he's showing.

I just keep telling him that the healing takes time. I think he'd like to get back to work but the pain/drugs is limiting that right now. And also, his job requires him to be speaking frequently to others...which can cause some distress.

He was trying to take an anxiety pill...but says he doesn't want to take it often because it also causes depression. How can one pill calm the anxiety and then cause depression???

~C

hwt's picture
hwt
Posts: 2008
Joined: Jun 2012

I slept thru most of my dark days. It took the results of my 1st NED scan before a light went on in my head and it all hit me...I had lost sight of the goal during tx. Afterall, I had cancer. Only when I got my scan results did I realize it was all worth it and I was cancer free. The thought of reoccurance lingers but as time passes the cancer free thoughts become more realistic. Try to reinforce the positive thoughts and talk about things you'd like to do when all of this is in the rear view mirror. It took me til week 5 post tx to turn the corner and week 6 I had lots of energy back, some people take longer. Try to keep drapes open as much a possible to let the sun in. Lorazepam (Ativan) was my BFF throughout, share depressed feelings with the doctor. It will get better and soon!

cureitall66's picture
cureitall66
Posts: 879
Joined: Aug 2012

He is taking the Ativan when he feels like he needs it, but he's afraid to take it often because it also says it causes depression. I was curious how a drug can calm, yet cause depression too?

Thank you for sharing your experience. This helps alot for me to understand.

~Cris

hwt's picture
hwt
Posts: 2008
Joined: Jun 2012

I didn't encounter depression from the Ativan. I think it's like when you see a drug advertised on t.v. and they have to cover all the bases with what could happen. Maybe try the Ativan at night for a few consecutive nights and see if helps. I've never taken one during the day but I know Matt does and he is always very chipper. Again, now that tx is over, try to turn the conversation to things you want to do together later in the year to yield positive thoughts that this will be behind you.

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

I'm sorry you two are having to deal with this. I remember feeling much the same. I wasn't so much afraid of the dark but at night is when my mind would wander like crazy. This is very off topic but I have a friend who moved from sunny California to Spokane WA and actually got depressed. Her doctor honestly RX a sun lamp and it helped so much. Now it's not a tanning lamp only a lamp that let's off a light to mimic the sun. She thought it was foolish but finally gave in and tried it. She still 8 years later uses it during those gloomy winter days. What I'm getting at is maybe introduce him to as much sunshine as possible, covering the neck of course. I would actually go in my backyard with a blanket around me and lay on this bench we have. It really did do wonders for my mood.

I also remember looking in the mirror and wondering who the heck was staring back at me. I'm not joking I looked as tho I'd aged at least 10 years. With the weight loss, stress, dehydration and plain ole feeling like crud I was getting very depressed. My home nurse who took care of me while I had my PEG noticed how depressed I'd come and called the dr to RX me a mild antidepressant. One that is to be taken everyday and not just when I'm feeling down. As for the side effects, I have no depression on top of depression. I'm taking lexapro by the way, it's very similar to zoloft. Mine also says depression can be one of the side effects. The thing is, they have to list any and all side effects that theyve been notified of, even if it is the rarest of rare. They are all made of different components and based on symptoms of the patient the dr will RX accordingly. Look at the symptoms for Tylenol and advil and you may never want to take those again either.
How is his pain level? I'm just wondering if he's taking something for pain that is clouding him, that for sure happens to me.

As far as being able to make it to tbe scans, I'm not going to lie it seems like forever to wait. I tried to take a short walk everyday, even at the very end of treatment when I felt horrible. Even a short walk to the corner and back. I watched a lot of funny movies and visited with my very close friends when they'd come by to see me. At first I didn't want anyone to come and see me looking that way but they genuinely wanted to check on me and once I got over the fact that my real friends could care less about all that I was fine. I appreciated their company.

Lastly about the swallowing. He must use those muscles, no way around it. I remember how badly it hurt trust me but I was determine not to lose that function. I know a lady 5 years out who still doesn't swallow! Several times a day I would try something. I sipped on coke, warm tea, ice chips, frozen yogurt, anything. That doesn't mean he has to take big swallows, little ones will do just fine. He can work his way up to swallowing bigger things as he heals.

My oncologist gave some good advice at the end of treatment. He told me not to think of healing and getting back to normal as a daily thing but a weekly thing. That was on a Wednesday and I literally would evaluate myself each Wednesday. On a weekly basis you will notice improvements, maybe not huge improvements each week but improvements none the less.

What I can promise you is that it does indeed get better. So I a week from now you can look back and realize that something has improved.

I hope some of what I've said makes sense and didn't confuse you even more :-)

Good luck and keep us posted.
Billie

phrannie51's picture
phrannie51
Posts: 3849
Joined: Mar 2012

it is winter, so it's dark when we get up, and dark LONG before bedtime...I suffered from seasonal depression for many years, until I started working nights and had the opportunity to get out into the daylight every single day. I live in a place where the sun doesn't shine but maybe one day a month during the winter, but still getting outside while it's light does wonders.

Another point was visiting with friends. I had 3 Cisplatin/5FU chemo's after I finished radiation...the mouth sores were so horrendous I couldn't wear my dentures. There was no way in hell I was going to let anyone "visit", so I'd go 3 of the 4 weeks between chemo's without seeing anybody but Greg and my sisters...I didn't realize what a bummer that was. But like Billie's friends...the people who care about me didn't care diddley squat if I looked 100 and had no teeth, all they wanted to do was see me, talk to me...be with me. I finally relented after our pump gave out, and I had to deal with all that with no teeth. It was wonderful...I forgot what I looked like within 5 minutes of good conversation and some laughs. It's so uplifting...and so NORMAL.

I looked up Ativan to see what it says about depression...like Billie, I took anti-depressents during treatment (when I remembered to take them)...Everybody is going to get at least a little depressed going thru this, knowing it was cancer, and wondering what this all means to our futures. What I read about Ativan is that it should be monitored on people who have a history of depression...I'm thinking those who have clinical depression...the kind that comes along for no reason. Ativan was a good friend to me when I couldn't sleep at night...too anxious to sleep. Maybe show him the side effects part of Ativan so he can see that getting depressed is probably not something he needs to worry about.

p

cureitall66's picture
cureitall66
Posts: 879
Joined: Aug 2012

I was googling the drug and comparing to other anti depressants and found they are all saying the same thing with side effects of depression. And I believe you are right with the differences in depressions. I'm going to see if he would stick with taking it at night for awhile then try to gradually take some through the day.

Yes, it's a bit gloomy around here in Michigan. Mot much sun shining these days. Our winter is upon us and the only thing pretty is just looking at the white stuff...(not driving in it of course..lol). I haven't been talking a lot about Christmas to him either...I know it is incredibly emotional right now for him..but we're celebrating it even if for a little while.

Thanks so much for this info...love the help I'm getting here.

God Bless...us ALL,

~C

cureitall66's picture
cureitall66
Posts: 879
Joined: Aug 2012

You are amazing with the words you have just shared with me. You don't realize just how much this means to me. It will help me to help him. It gives me such a better understanding of what is going on in his mind right now. I'm going to convince him to take his antidepressant they prescribed. I know it will do him well.

Your oncologist gave great advice. I'm going to use that approach with him.

You didn't confuse me at all....you helped me! Thank you so much Billie.

~Cris

ToBeGolden's picture
ToBeGolden
Posts: 697
Joined: Aug 2010

Spokane is in the sunny eastern portion of the state of Washington. In fact, if it were any further East, it would be in Idaho. Now if you want grey and dreary, you have to come West of the Cascades. That's were you'll find Seattle, Olympia, Portland, Salem, and Eugene. Or you can plant your roots in my neighbor hood: in the "Convergence Zone". The Convergence Zone is the place where the winds going around the Olympic mountains to the North meet with the winds going around the Olympic Mountain to the South. When the North Wind meets the South Wind, all the rain falls out.

Billie: Thanks for bringing up the subject. It sure is more fun ranting about the weather than about this dread disease.

And Yes: We really do infrequently have Sun Alerts as part of our traffic reports. Drivers emerge from a tunnel, right into the sun. It's been so long that they have even forgot how to squint, much less remembering where they put their sun glasses.

My wife uses a bright light to a great advantage. Rick.

donfoo's picture
donfoo
Posts: 1327
Joined: Dec 2012

Hi I have chronic depression for many years and now cancer. I do not take Ativan now but was subscribed it for panic attacks. It never seemed to effect the depression but maybe that is moot since I already had it; not a lot of humor here but sort of funny to me.

CivilMatt's picture
CivilMatt
Posts: 3085
Joined: May 2012

Hi Cris,

I guess this experience has revealed his mortality; it can be a lot to stomach. For me it was the finite number of days left, what am I going to do? Phrannie, Billie and hwt sound like they have good ideas for him.

He made it through the worst part (in pretty good shape) and should be looking forward to getting back on his feet. There is no doubt somebody slipped me an “ugly pill”, but I am learning to get along with the new me. My Mom says I have my smile back.

For me getting back outside was a big plus, those first walks were exhausting, but each day is better. He has some issues which he needs to deal with, like swallowing. He will get the hang of it again, just take it slow, a little at a time.

The same with eating, if you learned anything about H&N warriors is that our dance with food is all over the place. I really thought I would never eat real food again and came to grips with that. Now, all of a sudden, there is food once more. I got a little cocky the other day and tried some “Flaming Hot Crunchy Cheetos”, they started out pretty good but evolved into a choking mess. What can I say, it was kind of cool. I am going to eat the rest of the bag, just slower.

If he is depressed or in pain take something for it. Now that the cancer has been kicked to the curb, take your life back. Good luck and keep healing forward (makes sense to me).

Best,

Matt

cureitall66's picture
cureitall66
Posts: 879
Joined: Aug 2012

Matt,

Glad you felt cocky enough to try those "Flaming Hot Crunchy Cheetos"! I'm not so sure I could have given them a shot! You are a brave, brave warrior :) But, heh, I'm a big lover of Cheetos, so maybe we can get together for a Cheeto Party!! LOL

He keeps saying that food smells really good. The taste of ginger ale was good even with a sip of it. Really wish there was a way I could convince him to try more often. He keeps gagging up the mucus and seems to think it's getting in the way...along with the stinging when something hits the tongue.

Going to try the Ativan at night for awhile instead of the daytime to help him sleep. I really miss his smile and his laughs...I know it will come back. Sounds like yours is back...as your momma told you. :)

Today was the first day I actually heard him say he wish he knew if it was gone. I told him the doctors felt they treated it aggressively and the rads and chemo are still working...in the meantime we concentrate on healing, swallowing, remain positive, and leave the rest up to God....and we will have a cure.

This is purely a challenge for all of the H & N warriors and I know it's difficult to keep the "word" off the mind. But, in time those worries will be less. Staying positive with the mind is an important part of this process...I really believe that.

Thanks for your advice....and enjoy the rest of your CHEETOS!!

~C

luv4lacrosse's picture
luv4lacrosse
Posts: 1409
Joined: Jul 2010

I just went through this yesterday. Scanxiety is real, and knowing that it can literally be "heads I win or tails I lose" with the result. I too am all too familliar with looking in the mirror and not seeing the person I used to be. it is OK, you survived to live yet another day. I say this as if it is easy, and I have struggled with this the most during my journey, and even have had to see a Psychiatrist to help deal with the wide swooping emotional issues.

It does get better, but I have found you have to work at it every day.

Hope this helps.

Mike

cureitall66's picture
cureitall66
Posts: 879
Joined: Aug 2012

I appreciate your advice. I know it is such a difficult process for all of us involved in this ring with the beast. We each have had no choice but to learn to fight through it even though it's tough. I believe just as you that we must take it day by day. We have to trust our doctors with what they do and have the faith that God has provided them with the tools to do so.

Seeing a Psychiatrist or taking antidepressants is nothing to be ashamed about, these emotions are difficult for any individual to deal with. I'm so glad you reached out for some support with that. I wish you peace each day for the struggles you are dealing with. Again, thank you for taking the time to help me and others with advice during this journey.

~C

katenorwood
Posts: 1862
Joined: May 2012

Cris,
I still have moments....never ever take them to heart. I am a year into this battle and still have my thoughts wondering if I've got everything in a group. But I'm very type A personality....my way or the highway...lol ! Listen with an open heart and continue your wonderful care. I know he knows how much he is loved, and will battle through all of this. You are in my thoughts ! Katie Tell him I say hello, and it will ease up with time and patience.

patricke's picture
patricke
Posts: 489
Joined: Aug 2006

Hey C, treatment is over that is the great news, but the recovery process is no walk in the park, I remember all too well. Being a survivor is a blessing for sure, however, there is an enormous amount of adjustment, and establishing a new normal that must take place, which is a long, challenging process. I had a very healthy, active lifestyle (running, surfing, weight lifting, etc) before surgery and treatment, and afterward, during my early recovery, I wondered whether or not I would ever be able to get back into those things that I loved so much. Long story short, as they say, it took a lot of adjusting, and new normalizing, but I have been able to get back into all of those things, including running a marathon with my trusty PEG tube, and hiking up Mt Washington in NH twice. In order for me to make the necessary adaptive changes, and make no mistake, some days were better than others, I hit the ground running in regard to getting back into normal activities as soon as possible. I was fortunate in being able to get back to work relatively soon after treatment, which helped my adjustment. I had to consciously remind myself to stay in a positive zone; take life one day, hour, minute, second, or nanosecond at times when challenges were most difficult (and I still do); repeat during challenging periods my favorite mantra "I can do this;" and always look for solutions for the problems that the treatment process created for me. For example,it took awhile, but I was able to figure out a way to surf with my PEG tube. I believe that we have to come to terms with our losses, go through a grieving process, as it were, in order to move forward, which again takes time. It is frustrating to have to deal with the major changes that we all have to go through as a consequence of battling the beast, but during those frustrating moments, I remind myself that I'm happy just to be here (which i most assuridly am). So, take it slow, talk, and vent about the adjustments, frustrations, etc., as it is an evolutionary process. Remind him that yes, He Can Do This, which hopefully he will be saying to himself soon, and life does get better. Time, patience, and persistence are key elements in making the changes. My goal here is to convey a sense of hope about life getting better for everyone in the family, from getting to the first scan, to getting well beyond treatment and back to the normal activities of daily living.

PATRICK

yensid683
Posts: 241
Joined: Apr 2012

I found it to be glacially slow. I was told by my doctors that the first two to three weeks would be the most difficult of the process, but one day I would wake up and feel a little better, and he was right! It took about 20 days to happen, but one morning I woke up and I found I didn't have an upset stomach and I wasn't gagging on the accumulated crud in my throat. It took me almost two months to get to a point that I felt well enough to get re-involved with life and my family.

My point is that the dark does dissolve to light, the pain goes away, the throat clears up, and the ability to swallow more than liquids and jello does come back, but it takes a long time.

I have to think that your husband doesn't see an end to this, but it will. It just takes time.

There was a Bill Murray movie with Richard Dreyfuss, and I don't remember the title, but I do remember one of the signature lines "baby steps".....

luvofmylif
Posts: 344
Joined: Sep 2012

Reading everyones posts is so uplifting and encouraging. We are doing pretty well post treatment but I also strugle with the post treatment phase. I don't think that John worries like I do, but I know I will never have a 100% peaceful moment in my life again. I will always have cancer in the back of my mind. It is a life changing event that only those that go thru it can understand. For me the hardest part is the idea that life can be normal one day and the next day you or someone you love has Stage IV cancer.

I don't mean to sound ungrateful. I am happy for every moment I have with my husband. I hope that your husband will slowly regain his mental and physical health. I compare all this to post traumatic stress disorder. He has been beat up mentally and physically so it takes alot of time to mend.

Godspeed to you and your hubby

Joan

patricke's picture
patricke
Posts: 489
Joined: Aug 2006

Hang in there Joan, it takes some time, but down the road you will find that Most of your life is peaceful, and 100% beast thought free. Yeah, I still have thoughts of another shoe dropping from time to time, but, for the most part, I have them safely secured in a box far away from the thoughts concerning my daily living. When those other shoe thoughts do break in, I just admit that yes it could happen, but it's not happening today, so back you go that secure box, and i just keep on movin forward. It will get much, much better, but it is a long journey.

PATRICK

cureitall66's picture
cureitall66
Posts: 879
Joined: Aug 2012

You all are so wonderful in giving your comforting words and advice. It has brought tears to my eyes reading these and to think of all of you that have and may still be dealing with the dark side to this. It is amazing the feeling you get when we come together as human beings to share this journey ...just as God intended. If there's one thing I've gotten out of this whole ordeal, is that we are never ALONE! Whether it be family, friends, H & N family forum, or with our amazing God...we never fight ALONE.

Amen to you all and God Bless Us All,

~C

luvofmylif
Posts: 344
Joined: Sep 2012

I also am grateful to all the kind words. Thank you Patrick and Chris. Helps to read these posts.

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