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Can't stand waiting

VivianLee5689's picture
VivianLee5689
Posts: 546
Joined: Aug 2012

OK the wait to see the hematology oncologist on Monday is killing me. We found out Tuesday there is definitely something wrong, but with the holidays and the clinic being closed Thursday and Friday we had an appointment scheduled for Tuesday. Last night we received another call and they changed our appointment to Monday morning and have added a second appointment at noon with a hematology nurse practioner. I am hating the wait not knowing exactly what the plan is. We know it is either Multiple Myeloma or Plasma Cell Leukemia, but other than that I am an extreme newbie. David has not felt well the last couple of days and his skin color has been horrible. I have been watching a low grade fever, but so far it hasn't reached the 100.4 mark that they told us to be concerned about. David's neck looks good so far. He finished week three of radiation. He is having a lot a mucous and the thrush is really bad right now. I feel like I am in the twilight zone.

phrannie51's picture
phrannie51
Posts: 3628
Joined: Mar 2012

it IS...and there's nothing you can do to hurry it up. At least they shortened the wait by 24 hours, and you can get in on Monday, rather than having to go until Tues. This day is almost finished, so there's one down, two to go.

As hard as it is to do, can you get out for an hour or so...something to distract you from the clock, lift your spirits, give you something else to think about? Meet a friend for coffee or a quick meal?

I'm SO sorry David is having to put up with the thrush and the mucous on top of everything else...that is more misery added on to misery.

You WILL make it thru this waiting period...you will because you have no choice...acceptance of that fact will make it easier to do.

p

phrannie51's picture
phrannie51
Posts: 3628
Joined: Mar 2012

I only pushed the button once!! :)

p

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

I keep you and David in my mind and in my prayers.

I was wondering whether you could use earphones/earbuds to listen to TV/radio/Internet? You could have one earphone in your ear, leaving the other ear free to listen for David. I mean when David is resting/sleeping and you don't want to make noise to disturb him.

Also Arlene and I have started relying on closed captioning a lot. We have the sound up on our TV only about 2 hours a day. But that is all a personal choice. In the USA, most programs have closed captioning.

These suggestions will probably be of no help to you. So just ignore them. Rick.

luvofmylif
Posts: 344
Joined: Sep 2012

Vivian, just curious, if you don't mind me asking, but wondered what he is having radiated. Are they radiating the back of his throat or his neck or both?

Hang in there. I would feel the same way. Waiting is excruciating. It puts your entire life on hold. I am counting down the hours with you.

Joan

VivianLee5689's picture
VivianLee5689
Posts: 546
Joined: Aug 2012

David is having both sides of his neck irradiated. They got clean margins on the BOT so they decided not to do radiation to the tongue. I am really glad about that.

luvofmylif
Posts: 344
Joined: Sep 2012

thats how it is for us exactly. good luck with everything. I don't know exactly what you are going through because John hasn't had the problems David has, but I know it's so scary and out of our control to a large extent. My life is moment to moment...some moments good, some moments bad.

I am hoping that soon the good will outway the bad for you

Joan

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

and I'm sorry you do have to wait....prayers are being said and it's all I can do....I so wish I could do more...

I hope it's just an infection of some kind or something not serious. I really do...

Keep us posted ...you have been so strong and such a great caretaker ....and it obvious David is strong as well.

Best,

Tim

cureitall66's picture
cureitall66
Posts: 844
Joined: Aug 2012

I know the waiting is hard. In the meantime, you are doing everything you can possibly do to care for David. I think the suggestion that Rick (ToBeGolden) made about the closed captioning would be a good idea if you want to watch tv and keep the sound down for David to rest. Remember to take a little time away for yourself. Even if it's a 10 min walk. David has his cell phone if he suddenly needs you. Don't be afraid to ask for some help... family (his mom), neighbors, friends, church friends are normally willing to help, but they are usually waiting for you to ask as they don't really know what is needed.

Hang in there...Prayers are coming your way...

Cris

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

I know it is so very hard to be patient and wait. I'm sorry that you two keep running into problems. I wish I had a magic wand.....
You will continue to be in my prayers and I hope you get some good news soon, very soon!
Take care,
Billie

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