Things I didnt expect

SuzJ

I didn't expect to go "downhill" so fast

I didn't expect to be totally dependent on my son

I didn't expect to not be able to spell(???) you may see perfect spelling, but I have a program, gotta love programs

I didn't expect to have to drink gallons a day or eat non-stop

I didn't expect to be so shaky or so weak (should that be a "so fast"?)

I didn't expect to be so tired.

 

I expected it to be a PITA, that I was going to live at the hospital for 7 weeks almost

CivilMatt

one day at a time

SuzJ,

I am sorry for your bad start, but I see a bit of myself in all your statements.  I also had a bad start and spent 12 days in the hospital for no fault of my own.

But, after I got going I adjusted to the my temporary new life and would ride with the punches. I depended on my wife for much of my day to day care and chauffeuring around.  I drank so much water I lived in the bathroom, ,but all that water paid back dividends in swallowing and hydration.  Being weak, I have dealt with for over 5 years, I live with it.

Hopefully, you can find some solutions and some inner strength to power through this.  It is just for a short while and you will get better.

Matt

Josephwc

I also felt so dependent on friends and family

I am sorry to hear that you have to go through this.

 

The day after my surgery I was in total shock. The tears immediately followed and then the anger with frustration. Just keep doing what you are doing and talk or chat about it. Things will move along and your body will sort things out. I wish you all the best and hope you have as speedy of a recovery as possible. 

 

 

AnotherSurvivor

I blitzed thru the first 3

I blitzed thru the first 3 weeks wondering when the sucky part would start.  On 4/3 day I spiked a 103 fever, passed out on the floor three times, then did a crash ride to the ER to discover I had formed three massive pulmonary embolisms and was possibly minutes from a fatal heart attack.  Life's like a box of chocolates, you never know what you're going to get.  Mix a little chemo in and drama and pathos are included for free (tho there might be a co-pay or two).

Major point is we come thru.  You will come thru.  It will not be elegant, but you will adjust and discover small pockets of grit that will give you the traction you need to get to ringing the bell, and posting your PET came back NED.  It will happen.

If you can't get thru the day, get thru the hour.  If you can't get thru the hour, get thru the minute.  We can all do that, and that includes you.  So, now that you're going to survive, you get to spend the summer figuring out how to recover your taste buds.  That can keep you occupied for weeks.

Oh, and when the mucusites starts, my oncols wrote me a prescription for a phelgm suction pump.  Rental cost is $4.75 per month.  Beats spitting and gaging.  No, you can't suction out your tumor.

MMDowns

Although I am not the patient

Although I am not the patient I can tell you that we were so not prepared for the first week either.  It knocked my husband flat.  We kind of went into this with a pretty confident attitude and that quickly changed.  It had to.  But as Matt said, your body and mind will adjust and it will be manageable.   One of the comments that the nurse said to us was that this was not something you "power" through.  You are going to need help and that's OK. You will lean on people and that is OK too. Asking for help is such a vulnerable feeling and most of us see it as a "failure."  It is absolutely not.  Ever.  You need every bit of support, patience, love, meds, etc... Take it all.   Do what you can mentally and physically to help adjust to this "new normal", expect the unexpected, drink and drink and drink that water, go in for fluids if you can, take all the meds that will help you get through the day.  You CAN do this.  You already are doing it.  Hang in there!

swopoe

Ditto everything MMDowns said

Ditto everything MMDowns said. I am a  caregiver too, and she is so right. When my husband was going through treatment, he didn't expect to have to start using his peg tube on Christmas Eve. But it happened. Now, 17 months after diagnosis, you know what we didn't expect? That we wouldn't be thinking about cancer. Now we think about our son turning 13 next month. About our cat we adopted last week. We think about how it is already 86 degrees in our town today and how hot summer is going to get. We think about my husband's 20 year college reunion in June. These are the things we think about, and while going through treatment, we didn't know if we would ever get here. To the future. Every day is a day closer to your future and a day closer to better things.

Sprint Car Dude

Swopoe is right

I am 4-5 months out. Things are starting to improve. I am starting to live again. Just praying for the day just a little bit of saliva and taste will improve. It sure is a lot better that a month ago and the month before that. I open my eyes in the morning and say to myself, it is another great day on this beautiful earth.  Keep fighting the fight.

tommyodavey

It Will Get Better

Like you, I also had a very hard time with the first two weeks.  The only thing that helps is the passage of time.  Just sit, and try to be in recovery mode at all times. There is nothing wrong with depending on others.  It is just very hard for those of us who are the doers. It goes against the grain of our personality.

Let your son take care of you and give him a rain check for a nice dinner out or whatever some time in the future.  Believe or not, one day this will only be a bad memory.

Heal well.

SuzJ

Is that it?

I'm not used to being a patient, I've always been the carer (Or EMT) Lying down saying "help please" isn't in my gene pool.

Mum died 2 years ago, last week, of Lung Cancer, and I think I get it from her. at 70 she was still working in a cardiac Hospital, 4 shifts a week...

CivilMatt

rough patch

SuzJ,

You are not going to die.  You need to survive for the next 2 months so that you can go back to not being a patient.  I always hope for the best for those beginning, but you never know how hard it will kick some people.  Remember, there are lots of meds available for nausea, pain, anxiety, etc.  I never liked the mask and had to take 1 Lorazepam each session, I came to find them interesting.  I went through 6 bottles of magic mouth wash; it was my savior for throat, mouth and tongue discomfort.  Additionally, I used numerous containers of silver sulfadiazine cream.  You find what works for you to help get you through and do it.

Others here can share what they did and I would like to see you complete your treatment and move forward.

Also, you must keep the nurses and doctors apprised of your troubles, they can help.

Matt

SuzJ

I know I'll be here..

I'm too stubborn to do anything else.

Question - I remember hearing that "it'll get worse before it gets better" and something about the mask "tightens before it gets looser?"

The side of my face/jaw/neck that was tender before, is now pretty damn painful, like the sob has realized we are coming for him... does any of that makes sense?

MMDowns

swopoe said:

Ditto everything MMDowns said

Ditto everything MMDowns said. I am a  caregiver too, and she is so right. When my husband was going through treatment, he didn't expect to have to start using his peg tube on Christmas Eve. But it happened. Now, 17 months after diagnosis, you know what we didn't expect? That we wouldn't be thinking about cancer. Now we think about our son turning 13 next month. About our cat we adopted last week. We think about how it is already 86 degrees in our town today and how hot summer is going to get. We think about my husband's 20 year college reunion in June. These are the things we think about, and while going through treatment, we didn't know if we would ever get here. To the future. Every day is a day closer to your future and a day closer to better things.

Love, love, love what you

Love, love, love what you said.  You are so right.  It's hard to think about the future. The focus is cancer BUT as we get closer to the end we are slowly starting to plan what we could do this summer.    Thank you!!

MMDowns

SuzJ said:

I know I'll be here..

I'm too stubborn to do anything else.

Question - I remember hearing that "it'll get worse before it gets better" and something about the mask "tightens before it gets looser?"

The side of my face/jaw/neck that was tender before, is now pretty damn painful, like the sob has realized we are coming for him... does any of that makes sense?

I feel like it does get worse

I feel like it does get worse before it gets better because this is a tough treatment in a short time span.  You're putting your body through a lot and it's also emotionally draining.  But, it WILL get better.  You may even find that you feel better next week? That would be great!  Not sure about the mask?  My husband seems to do OK with it. It's by no means a picnic but he is able to handle it for the 15 min that he has to lay there.   If you have not invested in some type of gel or cream you should now and apply liberally on the whole area.  We are using 99.5% Aloe Vera and that stuff  is great.  I bought it off of Amazon.  Also, the radiagel I heard is very good as well.  It will soothe your skin.  Keep us updated!  Hang in there!

CivilMatt

MMDowns said:

I feel like it does get worse

I feel like it does get worse before it gets better because this is a tough treatment in a short time span.  You're putting your body through a lot and it's also emotionally draining.  But, it WILL get better.  You may even find that you feel better next week? That would be great!  Not sure about the mask?  My husband seems to do OK with it. It's by no means a picnic but he is able to handle it for the 15 min that he has to lay there.   If you have not invested in some type of gel or cream you should now and apply liberally on the whole area.  We are using 99.5% Aloe Vera and that stuff  is great.  I bought it off of Amazon.  Also, the radiagel I heard is very good as well.  It will soothe your skin.  Keep us updated!  Hang in there!

good luck

SuzJ,

Make sure any gels or creams are approved by your team prior to rads, some are not recommended.

Matt

MMDowns

Yes, definitely check.  We

Yes, definitely check.  We were  given the OK with the aloe.  

swopoe

Aquaphor, although messy, was

Aquaphor, although messy, was a godsend for my husband. He applied it right after rads and then again before bed. Even though he is very fair skinned, he didn't get many skin effects from the rads on his neck. His doc said it was probably in part because he kept it so moisturized.

MMDowns

swopoe said:

Aquaphor, although messy, was

Aquaphor, although messy, was a godsend for my husband. He applied it right after rads and then again before bed. Even though he is very fair skinned, he didn't get many skin effects from the rads on his neck. His doc said it was probably in part because he kept it so moisturized.

I think that is what is

I think that is what is helping my husband as well.  We started applying the aloe the day he started rads. We don't skip at day and sometimes it's applied twice a day.  The dr. did prescribe the silvadone (sp?) and we picked that up yesterday but he told my husband don't use it unless we notice that the aloe isn't working anymore.  So we have it on hand but so far so good.  It's the little things that get us through the day  

SuzJ

Aloe

whats it called? do you have a link for it?

Sprint Car Dude

RediPlex Rx Gel is what I used until it was time for the Silvadene Cream and then the Aquaphor.

SuzJ

Thank You!

Riot act read today - I'm gonna try and eat more, but as my mouth just went bad I'm not sure how that'll work. I already got the mouthwash, altho - gave the girls a laugh, when my chemo brain, said I was going to rinse with "Magic Mike"

Doubling up on some stuff - as my magnesium, potassium, and albumin don't look like they want to grace me with their presence

So just over a week down, here goes, apparently, this weekend should be rough (joy) I vote I sleep thru it

MMDowns

SuzJ said:

Aloe

whats it called? do you have a link for it?

Yes. It's called green leaf

Yes. It's called green leaf naturals aloe Vera gel