Week two post treatment feeling blue

Kari2007

Tomorrow will be two weeks since I completed treatment and I'm feeling blue. My energy is slowly coming back, although I nap at least once a day. Still not eating other than tube feedings because of pain, but starting to feel like it's a possibility. Had a lot of nausea last night and today (threw up tube feedings) and mucus is still a struggle.

I'm just so tired of feeling rotten and it's getting me down. It's hard to feel like I'm ever going to feel even close to how I did before and I'm so sick of it. How do I bust out of this mood?

Kari

 

CivilMatt

you are still early in the game

Hi Kari,

Happy Sunday, it is a beautiful day and the good “new normal” is getting close.  I really do not feel normal like I did pre-cancer, but my new normal minus nausea and icky side effects is pretty nice.  You will have to pilot into a new world.

It is a bummer to throw-up tube stuff, if it is Jevity it tastes just awful.  Are you tubing at a good rate? 

Maybe, it is time to try a taste of normal foods, not a big bite and swallow, just enough to get a hint of your new world.  I tried everything,  sweet, salty, sour, savory, ice-cream, candy, hard candy, etc..  Don’t be surprised to find a winner.  Don’t overdo it if you are not ready.

How is a sip of ginger ale?  I still find all carbonated pop potent, but I like the fizz.

My serious reconditioned taste buds did not wake-up till 7 months post; there was a lot of smoothies in there and a ton of sampling.

Keep on smiling,

Matt

RottiesMom

Kari

I think part of it too is for 7 weeks every day we had to concentrate on treatment.  We were so focused on going for chemo, going for radiation. It feels so strange not to have to be somewhere everyday. Now, although treatment is over, we are still suffering effects.  This last week and a half the effects have actually been worse for me.  I am still am on tube feedings and the mucus does get to me.  I've just been taking things real slow and just realizing that I've been on a lot of meds these last 7 weeks and I've weaned off all (except for nausea and mucinex) so that's going to effect things.  I did try a cup of coffee today and while it didn't taste like coffee, it didn't taste bad (which is why I stopped).  Be easy on yourself, Kari!

Noellesmom

I remember reading

That after all the flurry of treatments and doctor's appointments there is a kind of let-down feeling for many folks.  Seems to be normal just like post-holiday blues are normal although the only comparison there is that emotions run high.

Make sure you work with your medical team and let them know if you don't start feeling better emotionally.

Gypsy28

Hang in there

I felt the same way you do when i was two weeks out. Now that I am at 4 weeks things are better. Not great but better. You start to notice little things getting better. I am not that nauseous anymore. You will turn a corner it takes too long i know. Hang in there.

yensid683

Blue turns to Sunshine

I have been where you are.  At two weeks post I was told by my MO that the dry mouth issue would likely be permanent.  I was so down and so blue that I felt like Sherwin Williams would make a specific blue color chip just for me.

Complicating things was the very tenuou relationship that I had with my spouse at the time (caregiving had taken its toll).  I felt like I'd always feel like this, that life would be horrible and that I'd be like this for the rest of my miserable life.

It sounds trite, but I just kept putting 'one foot in front of the other'.  I followed my doctor's advice, I leaned on the good people on this site, I read everything I could on recovering and tried to have some positive outlook. 

It took a while but one day I noticed that it wasn't as bad as it had been, I still hurt, couldn't swallow anything but liquids, gave back every 4th or 5th tube feeding but I noticed that I didn't feel as bad as I did.

The days pass slowly, healing and recovery take an agonizing amount of time but I was back to work a few weeks later, and now, some 4 years since the end of treatments, I'm back to that new normal that Matt speaks to. 

Hang in there, it does get better, just slower than molasses in January in Talkeetna AK!

Peter

BTW - stage iva, base of tongue, induction chemo, concurrent chemo and radiation, two selective neck dissections so 'been there - done that'

It does get better, give yourself a chance to heal, give yourself permission to feel the small steps of recovery!

Fritz

You will make it!

Hang in there Kari! You are going through the roughest time now. It will slowly get better. Do not expect miracles to happen as it will take time. Some days will seem like tremendous progress is made only to wake up the next day depressed again because the progress you thought you made subsides. I am beginning my 7th week post-treatment. Still have a lot of mucous scarring and little in the way of saliva. Any meal that is not highly moistened or liquid in nature takes water or milk or some other beverage to help wash it down. Many days I feel like half my meal is stuck somewhere in my throat. And I am so tired of supplements to drink.

It is a very slow process so don't try to rush it. As Matt says above, try a little bit here and there to see if you can move forward, otherwise, continue to do what you can and let your body heal.

I hope you start to feel better soon.

Freddie

 

Bart T

PATIENCE, PATIENCE, PATIENCE

Seems like shortly after completing treatments, everyone has at least a few major questions. In a nutshell, the answers are “Yes” you will get better. “No” it won’t happen as fast as you would like, nor will it happen at the same time as the others before you. “Yes” you will have some permanent side effects which will probably be nothing more than a speedbump in your normal activity.

Allow yourself to do what feels best for you. If that’s sitting on the sofa watching all 100 of the Netflex best movies ever, do it. If going back to your old schedule feels best for you, do it. Everyone heals and feels different, but one common thread that seems universally important is to do your best maintain a positive outlook. The disease and treatment may get the best of your body, and that’s something you can’t control. But you, and only you can control your attitude and outlook, so focus on what you can control. 

I wish you the best. 

Kari2007

Thank you

Thanks everyone for responding. The crying and feeling of hopelessness coupled with agonizing anxiety has been hell. I could barely keep anything down over the weekend and ended up going in to get two liters of fluids yesterday. I spoke with one of the oncologists and he said that I'm in the worst of it now and that these mental symptoms are really common. He assured me that it will, very slowly, get better. I'm just so tired of the daily routine of meds, tube feeds, and hoping it will all stay down. 

I don't have a lot of pain anymore, so I feel like I should start trying some high protein shakes maybe supplemented with Ensure. I feel like getting off these damn tube feeds will be a big boost to my mood, but I know I shouldn't rush it, either. It's weird how during treatment I got totally used to the tube feedings and now I'm just mentally resisting them all over again. I feel like it's a huge reminder of sickness and recovery. Eating was always a big comfort for me, so it's hard to have that thing that brought be comfort to not be available during this time. 

It really does help to hear that nearly everyone has been where I'm at right now. I'm trying to stay positive, but it's hard with I feel so crappy. I need to find a way to mentally turn around the negative thoughts (I'm so sick, this will take forever, why can't I get better faster, etc) and replace them with loving positive thoughts (my body is doing what it needs to do to heal, I am taking care of myself when i take my meds and tube feedings which will help me recover). Easier said than done, though. 

I'm scared because i'm starting school at the end of September and I want to feel well enough to attend. It's only one weekend day four times a quarter and every other Friday for a few hours but it does involve a big commute and being able to write papers, etc. I've been working so hard at grad school, I don't want this to be taken away from me, too. 

Kari