starting week 3 of 7. Chemo again this week

Klynten
Klynten Member Posts: 29
in Head and Neck Cancer #1
Hello all,

Well I've had a rough go of it last few weeks. Cisplatin kicked me in the pants. I have absolutely no appetite. My veins are shot from the Cisplatin, but thank god for great ONC Nurses, they seem to always get an IV site on me. I've gone in for lots of iv fluids, also I broke a rib vomiting. I decided to get the PEG tube, being a nurse you think I would know what to expect with placing a NG tube, we couldn't get the tube in my nose so we did it in the mouth, HORRIBLE. I will so be a better nurse after this! Anyways, the whole PEG tube placement experience was terrible, but that is another story.
My throat pain is getting bad, still able to swallow but I only like really cold things, cold ice water, ice chips, and ice cream. But I barely eat, I went 4 days earlier this last week, and am on day 2 now of very little intake. I still fill full, I feed through the tube and it seems like 12 plus hours later, my stomach is full. They say it is free air trapped under my diaphragm from the peg tube placement. We did a ct of the stomach and everything is working, thank god. I am on meds for thrush, and I haven't been able to work hardly at all.
So if fighting this cancer wasn't enough, my wife is way stressed because of all the financial burdens on us. And I have been not feeling well, and sleeping a lot more. I feel like she blames me for everything. She just complains that sometimes she thinks I could do more, or be more attentive to everyone, she says stuff like "I'm exhausted too but I can't check out. I can't deal with this, I spend most of my time trying not to vomit! I know I am grumpy, and being on the diflucan I can't take the pain meds cause they diflucan causes my kidneys to not clear the pain meds out normally so the effects last longer, so I have chosen to not take them while on the thrush meds. I know I am more tired, and I don't have any answers but I just think I can't handle her complaining. It makes me not want to mention that I hurt or what I am going through. It amazes me how she can be so there for me in so many ways and then be so hurt by something that I am not trying to do. She thinks I am giving up and not fighting, and why am I having such a hard time of it when SHE KNOWs others who worked the whole time and were able to eat... ect. ect. I AM NOT THEM< I DON"T NEED THIS ****!

Anyways, thanks for letting me complain. I fear she will think... "He so isn't worth this" or that I will eventually think... I so don't need this, I'm out. I don't know what to do. I am just trying to listen to my body, get rest (which of course I am not doing.... I sleep in bursts at best. I sure hope chemo doesn't kick my butt as bad as it did the first go. Labs tomorrow, chemo wed. Wish me luck... only 4 weeks left

Clinton

Comments

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #2
    Hi Clinton
    I can see you back there, just behind me, in my rear view mirror. I'm now on week 5 of rads. Had the cisplatinum/taxotere. Still on erbitux. Getting worse by the day. Got my eye on the horizon, what else can you do?

    The treatment will be whatever it is. The cisplatin made me fairly ill, by the third dose. The last dose took me about a month to stop the diarrhea and nausea. But, it did end. Now the rads are catching up. I dont have a tube, but its going to be pretty close as to whether I will still need one. Been down the thrush road as well, surprising how much that hurt.

    Your wife would benefit from coming here where she can see from others of us, both victims and caretakers (isnt there some better word for this?) as to how this goes for both of us. You guys, as you certainly know from reading your post) aren't blazing trail where no one has gone befofre. The financial strss, the marital stress, the depression..... all of these are seen by most of us.

    It's important for you, and especially for her to know, that this isn't over the day they take your mask off and throw it away. Recover then has to take place, and that's going to take some time as well.


    It sounds like you really need the PEG. Keep working on that, as nutritian is crucial to you now. Some others here have had similar problems with theirs. Maybe they can suggest ways around the feeling of fullness.

    Best to you,

    Pat
  • robinleigh
    robinleigh Member Posts: 297
    #3
    Rough patch
    Clinton,
    Sounds like you are in a rough patch but, this will pass. Cisplatin, they say, is the "big gun" so I guess it makes sense that it's hard to tolerate. Do you have the backup arsenal of nausea medication? Zofran seems to work best for my husband. Actually, a tiny bit of mj works a quick wonder.

    That full feeling was our experience, as well. Seems it's best to have small, frequent feedings. I do think it's important to push through and make sure you are getting proper nutrition. You need lots of calories and especially protein to heal. The PEG tube has literally been a lifesaver for Andy and it's great to have it for back-up.

    Hope your wife gets through her difficulties so she can be there for you. There are caregiver support groups at most cancer centers. We all need to vent. If she can't find a resource for support, you are welcome to direct her to private message me on this site.

    Glad you are on the countdown with that light at the end of the tunnel!

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