Things I didnt expect

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

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.

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.

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,

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

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 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 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!

SuzJ,

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

Matt

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.