The two weeks after I took painkillers round the clock all I wanted to do is tube feed and sleep!

Long time no post.  Not much going on.  Same old same old. Haven't used my tube since 8/12.  Taking all meds by mouth.  Doing lightweight chores around the house and starting exercise again.  Some saliva coming back, some taste but weak on both counts.  Mucous is less of a nuisance.  Mouth still dry.

Had follow up with medical oncology today.  Labs drawn and vitals good.  Referral placed for PEG removal!  Hopefully not a hospital deal.  I think it depends on which type was installed.  NP admonished me to start up my stretching on mouth and neck.  I had stopped because it was breaking my skin when I was in rads.  I have resumed lymphatic massage because fluid is really piling up.

No longer on opiates or benadryl for mucous.  Weight stable between 145-149.

Will update again after radiation follow up.

Have a great weekend everyone!

ProustLover said:

Good to hear from you

Ozy:  you have a great week-end too!  It's good news that the "same old, same old" is what you'd expect it to be, or even better.  Best wishes and good vibes your way.  

Thank you Proust!

The boy will be coming for Sunday dinner.  I am planning meatloaf with the ketchup glaze baked on, carrots, mashed potatoes and plenty of gravy with chocolate cupcakes and ice cream for dessert.

Daughter and I made Agua Fresca de Jamaica-kind of like sweet and spicy tea made from hibiscus flowers.  It's really good.  Tired of coffee, tea and drink mix.  I still can't drink just plain water right now-never could.  Always have to flavor it with something.

Just checking in so nobody thinks I bought it.

Still having this godawful pain on the right side(radiation zone)of my head. It's not constant.  Once in a while I have a few hours that I don't take meds but when the pain comes back it is sometimes excruciating.  I never take pain meds and drive but if I had to drive somewhere with this pain, it would still be dangerous that's how bad it hurts.

I did call the radiation onc's office to request pain meds they called in some norco.  That's nice maybe I won't have to take the 12 year old codeine I found buried in a drawer.

I left a message day before yesterday at the rehab place for lymphedema treatment because the rad onc office sent the referral over.  Hopefully I'll hear from them soon.  I think a good chunk of this pain is from lymphedema and if that is addressed properly maybe my pain level will decrease.  It's probably not going to completely disappear-I'll probably have some nagging little remnants for the rest of my life.

It would be nice though not to feel like someone beat me up and tried to pull my hair out.  I want to get more active and do more constructive things. 

I can do dishes and laundry and light things still but when this pain really hits the only exercise I get is running for more meds or to heat up my rice sock to put on my head. Forget yardwork or trying to sew or fall cleaning.  I didn't spring clean this year the windows haven't been washed in almost two years, the garden was a bust this year.

Oh well I'm still alive and only had to bust out the walker once!  Low blood pressure was making me dizzy for a bit but okay now.

It's a nice day today not smelling smoke and fresh air coming through the window feels like fall.  Love hearing the wind rustle in the trees and hearing the birds sing.  Fall always makes me think of a roast dinner with apple pie for dessert.  Soup.  Yum.

Speaking of food... on a brighter note my taste has almost come back!  My daughter made chicken enchiladas with green sauce the other day and they were very tasty with sour cream and avocado.  They were very moist and chicken was in tiny tender pieces so very easy to eat.  Just the thought of those enchiladas and how I could taste them is really cheering me up right now.

So it's not all bad but when that pain hits that's all I can see.

So that's why I haven't posted in a while.  Too much whining.

wbcgaruss said:

Well ozy

Thanks for checking in.
It looks like your recovery is going pretty well except for this pain in the neck, uhuhuhmmmm, head, well close enough.
Your taste is back that's great.
And you said " fresh air coming through the window feels like fall.  Love hearing the wind rustle in the trees and hearing the birds sing.
It is wonderful that God has Blessed you to be here and enjoy these things of life and this cancer battle has a way of helping appreciate these things all the more.
Now you can enjoy the fall and get all prepared over the winter to really go at it next spring with the cleaning and the garden.
ozy have you spoken to your docs about getting professional treatment for your lymphedema.
My team noticed it in me and sent me for therapy.

ozy here is a great video you might want to look at

Lymphatic Drainage Massage for Face, Head, & Neck Swelling or Lymphedema - By a Physical Therapist
https://www.youtube.com/watch?v=VQdLZ26r-rU

Hope it helps and wishing you continued good recovery and hopefully you very soon get rid of this pain.
Take Care-God Bless-Russ

 

 

I did ask about a lymphedema specialist and the rad onc office sent a referral to the rehab place.  I left a message two days ago.  Their recorded message said they would get back to me in 24 hours.  I should have my daughter call because my speech is getting bad from dry mouth.  Maybe they can't understand my message?

wbcgaruss said:

Ozy Check The Video Over

She shows you all you need to know about lymphatic drainage you can do at home.

The woman is a trained therapist.

This can get you started at home till you get to see the therapist.

I  had several sessions and I was given drainage maneuvers to do at home.

Go to the professional so they can evaluate your individual needs. 

Take care God-bless Russ 

 

Thank you Russ.  I've been doing the massage like she shows but it doesn't seem effective.

wbcgaruss said:

OK Very Good Then

It is time to get to the pros actually your doctors to make sure it is the lymphedema causing your pain.
It is possible it could be something else.
But I am sure you want to get a handle on the lymphedema also.
So ask them to refer you and get this checked out there is no reason to live with this pain if you can find a solution and it might be an easy one.
I had it and many on here have dealt with it but I was always told your lymph system finds or makes new pathways for your lymph system to drain.
So for most or all of us, time resolves the problem but it can be problematic at the time.

Wishing You The Best-Take Care-God Bless-Russ

 

 

Until I can get in I'll keep doing stretches and massages and live in the recliner because the pile of pillows on the bed isn't working.  No matter what I do I slide down or my head falls and hits the headboard.  If I sleep upright it isn't as bad so to some extent it's got to be lymphedema.