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Réponse de Carlyn
24 juil. 2015, 22 h 55

MaryMary, I too want to give you a big virtual ((HUG))

This is a very difficult time. I know. I've been there with my parents.

How are you doing? How are things going? Did you get the answers you were seeking from doctors etc?

Thinking of you. I hope you're able to check in soon. 
 
Réponse de Marymary
25 juil. 2015, 16 h 30

Hi - it's been a tough few weeks people not goign to BS.

Sun. 13 - He landed up in ER temp of 103 then they release him which I did NOT think was a good idea., but I'm not a dr., ER dr said she looked at blood and feels quite sure its not a infection not sepsis which she originally thought.

Mon - 14th next day I talked to chemo dr and she wants us back there cuz she  rec'd blood cultures from the thurs and yes he had a infection and there is bacteria in his blood., I said well that is all fine and well dr. but I am not a nurse or dr and they didn't listen to me last night what makes you think they are goign to listen to me this morning?  I'm not going to bring him back there to sit in ER for 5-6 hours with everyone else so she said she would call.  So she did said go to ER and then he will get admitted., well that was at 1010 then he did land up in ER for like 3 hrs with all other people.  

It was so sad to see he didn't want to leave the house he knew he had too but it was hard to see., he was scared and he thought that might be the last time he sees his own house :(  took him like 3 1/2 hrs to get out - I didn't push him jsut gentle reminders even the hospital called telling him he should be there and they're waiting for him.  

! week in hospital they released him STILL with 4 different bacteria in his blood but its ok cuz he has antibiotics - ya ok., no talk of the bacteria whatsoever., they know its not from bladder or colon so then ??? Ya no answers - they could care less where it's coming from or how it even got there - they let him go white blood count @ 3700., temp normal., he was well hydrated so he can go., I was NONE too please at all.

I'm not impressed with any of the dr's I am so not., I asked for 2 weeks what kinda shape does this guy have to be in before you all do something but all of sudden because of temp they find this all out.

He's home been 1 wk and still not drinking anywhere near enough, he needs to drink a lot with these pills, I remind him you have to drink more  or you'll land back in hospital so last 2 days 2 bottles but not enough.  although he does to boosts per day so he was not doing that before so that kinda helps.

But yes his voice is better., he is eating a tad more because he doesn't want back in hospital but wretching more so ????  He is ok told me he was bored yesterday and wanted to try to eat something else so he tried sushi - wow.  he managed two and wants to get out of the house which is a major thing too. whoa so he is OK but not great yet.  baby steps right

I seriously am at a loss for words to anyone and everyone!!! I have nothing to say to anyone period., I don't want to talk todr's - I so don't want to but I will listen and I'm serious I have had it with them.  I am not sure what it is.

I'm still having quite a difficult time with the NO boyfriend thing,  that still hurts.  I want., what I want I can't have so maybe that is why I am so much at a LOSS.,  not sure.  You can't turn your heart off ya know :(  wish it were that easy.  It's so strange with my son's father who I haven't lived with in 16 yrs and now I am and now not with the man I want to be with after 15 yrs - life throws weird things at ya huh.  I'd still make same decisions mind you but maybe have kept my own place :(  

Hope all is going well with you all :)  one day at a time right!!!   hugs to all of you :)  take care 
 
Réponse de JennJilks
26 juil. 2015, 23 h 58

Deep breath. One day at a time. We're off to the radiation oncologist tomorrow. 
 
Réponse de Carlyn
27 juil. 2015, 0 h 33

Great advice JennJilks. You know as you're in it too.

It's been 8 years since for me now but I remember, that advice was among the best I received from hospice at the time.

Marymary, I don't know if this is of help but these are easy guided things I use to help calm, settle, accept things with my illness when the going gets rough at times, or i'm just overwhelmed or frustrated. There are free meditation apps, some are just music or nature sounds, timed to last for 5 minutes to half an hour. Some I use at various times are listed below....

These are all by Meditation Oasis it looks like. Titles of the individual apps I use are  Relax and Rest
Simply Being
Take a break

There's a different one by different company I think (looks like?) called End Anxiety. I believe I found them all searching in the app store on ipad.

Please know, i'm not great at taking my own advice so no pressure here. I'm mentioning them because when I first tried them it was surprising to me how much they helped.

Thinking of you. 
 
Réponse de NatR
27 juil. 2015, 4 h 07

Sending support to you marymary

it  helps to have the tiny bits of good news.
sounds like you are doing what you set out to do.  Life is full of bumps in the road, but you won't regret the gift you are giving...and I hate to say this  - so many people tell me .... You will be rewarded for kindness and caregiving.  It may be true but it can take its time finding us sometimes .
but for now, do this and we will try to follow along with you :) 
very proud of your caregiving.  You rock! 
NatR 👍🏻
 
 
Réponse de Marymary
29 juil. 2015, 18 h 50

Hi all - thanks yes for sure one day @ a time.  

He is doing better - says heès bored. has been doing some house work - did a garbage run yesterday., came to Save On with me - yes he wants to get out and do stuff wow.  He has not done anything in so long itès kinda werid - freaked me out the first two days., I was worried he was over doing it but he seems ok., he wants to eat., but with no taste buds it sucks still he says.  So he will try a bite of this or that but that is it.

Jenjiks - good luck with radiolgist - let us know what was said k!!!

Caryln - its funny what you say about meditating., Ive been meditating for like 25-30 yrs but for some reason I can NOT do at this time., I aslo conduct meditations for people.  but i do take my  quiet times which is a form of meditation., 600 - 630am watching sun come up., star gazing at nite., painting planter pots., watching the blue sky and watching and listening to the birds in the morning., I do what I can do, I was beating myself up for not being able to meditate but this is the next best thing for me at this time., I will get back at it again but not in the cards for me right now., what I do my prayers during the day that is also a form of meditating too.,, just how you look at it you know.  I am doing what I am capable of doing now.  

Yes stillness is what matters and I do it in different ways through the day - just not the way I use too. :)  It is all good!!

Today is a good day!!!  Hope you are all hanging in there - and keep calm and carry on!! 
 
Réponse de Carlyn
29 juil. 2015, 19 h 39

Marymary, it's very impressive that you have all those skills. They do help a lot.

Reading your posts, I was remembering caring for both of parents as they were nearing the end with different types of cancer. Each day I had a list of 35 things I had to do and there was never a day where I managed to finish the whole list. The next morning, after only a few hours of sleep, it would start all over again and i'd have some from the previous day's list and then the new days list on top of that.

Your posts reminded me of being where you are. I'm the same as you, I do waht I can, go with the flow of what helps me manage things and it truly is different tools, techniques, on different days.

I'm very happy you're having a good day. You're doing remarkable.

All the best. 
 
Réponse de Marymary
16 sept. 2015, 17 h 52

Hi all:

jenjilks/carlyn/natr - thank you for your positive thoughts and support - they truly meant a lot!!!

JenJilks - how did radioligist go?  Let me know please.  Positive thoguths your way

I've been in a totally NEW place for last month due to a lot of new ways of looking at things and places and werid but in a different space...

My son's dad has been eating - eating and eating woohooo, for just over a month he looks good, only thing that gets to him is his mouth, taste buds etc., wretching a bit still but not anywhere near like he was.  He is in a much better place for sure.

He thought for sure he had gained 10lbs for sure due to eating and went to the dr's 2 weeks ago and he has lost weight?  Strange, his blood pressure was way low but that would not affect his weight so they ajusted his blood pressure pills.  During treatments he went from 206-209lbs down to 160lbs back up to 165 then 169, then 2 weeks ago he was at 164 now he's at 157?  Very strange and that concerns him a lot he wants togain weight.  We'll have to wait and see, my gut says it has something to do with his thyroid but will wait and see what the scan says.

PET scan takes place on Sept 23rd, hoping for the best results, praying like crazy. 

He wants to go back to work cuz he is so bored, so that is a good thing but will not do so til Nov if all goes well with the scan.

His hearing is so not good now.  He still has the chemo brain thing, I'm thinking that might not go away as his hearing will probably not ever get better also.  He forgets things or does not do them NOT because he does NOT want to but he just does NOT think on them, if that makes sense?

Overall he is doing a hell of a lot better than others who have gone through what he has, Dr's have said as much also.  So we'll go with that!!!

As for my son he is doing really well, he has always thought positive and will only go with the positive aspects of things period.  He is such a blessing he so is.

I am still doing day by day.  He was doing well enough that I got away 2nd week of aug. all by myself for 6 days which was great., house sat at a friends., came back with NEW perspective, I meditated a lot and really concentrated on ME and only me - wow.  So helped it truly did my mind body and spirit wonders.

When I returned I saw his dad really saw him, his mind not the same as it was, I would ask him something and he would just look off & I would wait a few minutes and he would look at me like what, are you going to answer my question and I would ask again and then he would answer.  That when it occurred to me he does NOT drink water because he just doesn't THINK of doing so., he has no clue how much water he has or hasnt drank.  He literally does not THINK to drink the water, hmm?  He went out with 2 different shoes on - 1 being a sandal the other being a dress shoe and didnt realize for 1 1/2 hrs, he thought this was hilarious that he didnt know.  We'll have to see - I remind him to take his medications every day he openly admitted to me that I NEED to help - remind him to do so.

So hope you are all ok, let me know what is going on with you all, been busy and trying to let go and not be as concerned as I was and release so I can move forward with MY life and its harder than I thought, not to worry as much.  

Take care you all 
 
Réponse de Carlyn
20 sept. 2015, 19 h 25

MaryMary, 

Thank you so much for the update on how all of you are doing. This sounds really good! It's good to read your words and your positivity is leaping off the screen. :-)

Things can change so fast sometimes. I'm so so happy for you that you got some time away to focus on you. That is very rare and difficult to do but i'm really glad it worked out. 

This sounds strange to say here but I'm feeling very happy for you and your family. I think your positive energy is contagious and inspiring :-).

I will keep holding positive thoughts for all of you for the scan on the 23rd. 

Your last paragraph....I have so been there. You're doing amazing from my perspective. I sort of feel like giving you a cheer of "Way to Go!" :-) 

Carlyn
 
Réponse de Marymary
12 oct. 2015, 23 h 32

Thank you so much Carlyn and yes its been since July 3rd where my sons dad finished treatment and he is eating now (like a horse lol) but unfortunately lhe's oosing weight like crazy - no rhyme nor reason.  they say maybe because of active cell that remain, could be remains of treatment although they even say the effects only last 2 to 3 months and 3 months are up - done.  He says his throat still bothers him quite a bit as well as his mouth, they say that is normal.  We can't do nothing else but think positive and frigin wait again.  His weight bothers him a lot more than he lets on for sure.  His thryoid is over active (due to radiation iin his neck and hopefully that will work itself out).  We see the radiologist tommorow and I sure hope she has something to frigin say.  I hope so.

So results from PET scan after 3 months - supposedly say inconclusive?  Which I think is not the correct answer - they are just afraid to say something -whatever that may be....my gut says they do not want to say something especially if its negative to keep him going but then again I also know his body can NOT take chemo again this soon, so that may have something to do with it.  Then again they say in another 8-12 wks they will do another scan.  Waiting, no news, no difference, no info. waiting waiting waiting - what is next? So in saying that I am not going to allow waiting to get to me.  We will wait it out but in this time we will make the best of it.

its been awhile and today being a new moon I am taking advantage of its energy and writing a list of all the good things I want to bring in my life which will benefit me but my family as well.

I am taking this becasue this year so far has not been good period so I've decided to go with only the good things coming, to look at things in a positive light....even if it make look like a negative I am bound and determined to make it positive - come hell or high water. 

For e.g.:  No new is good news - the waiting game (which we've had enough of so) so now no news is ok & we go with today and at least it is NOT bad news right so.

Think and be positive - turn a negative into a positive...or look at it more positive.

Hope this makes sense :)  Hope everyone is doing ok.  Sending out positive energies to all who use this site.

 


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