Discussion Forums

Un peu peur...A little afraid.... 
Started by passirose
30 Mar 2014, 6:36 PM

Bien voilà, j'ai de plus en plus de difficultés a respirer. J'utilise l'oxygénothérapie plus souvent, et pour la 1ere fois, elle fait du bien.  Pour moi, c'est un autre signe que plus rien ne va comme il se doit.

Je me suis étouffée "solide" 2 fois cette semaine... entre autre hier, et j'ai due tousser tellement fort pour évacuer cette miette de pain, qu'à chaque toux eh bien je voyais des éclairs et pensait tomber dans les pommes, de plus, je dois avouer à ma grande honte. avoir uriné dans mon pantalon...  Ce coup-là j'ai tout nettoyé, mais qu,arrivera t il si je tombe ainsi, et que c'est ma fille et son chum qui entre dans la maison?  Mon dieu quelle vision d'apocalypse.

Mon visage est rond, tellement rond que je ne peux regarder derriere moi, et quand je le fais je ne vois rien du replis de peau.

Et il y a des visions d'horreur, des pensées sordides qui commencent à me trotter dans la tete, car le moment fatidique arrivera tot ou tard, est-ce que je désire vraiment avoir la lucidité que j'ai en ce moment?  Qu'est-ce qui va décider d'éteindre les lumières ou qui est-ce?

Je suis chanceuse, mon conjoint m'aide comme c'est pas possible,  il n'oublie jamais de me tendre le bras, ou de m'aider à soulever la jambe, il prépare les repas, et me demande toujours ce que je veux, il me raconte sa journée et me demande des nouvelles de la mienne... il est incroyable.

Voilà, ici cest la seule place ou je peux dire ces choses qui font un peu (beaucoup) peur...


Report this post      
Reply by moderator | modératrice
31 Mar 2014, 5:39 PM

Ma chère passirose,

Je ne peuz pas imaginer la peur... Merci pour partager avec nous autres. N'oublie pas que tu peux aussi consulter notre équipe de spécialistes en soins palliatifs.

Hello everyone,
Passirose reads and writes English, but as her energy dwindles, you can imagine that writing in English takes more effort than she can spare. I encourage you to use Google translate 
translate.google.com/ to translate her message above recognizing the tools limitations of course. Then write to her in English.

Let's let her know that she is not alone and that she can share her fears openly with us.
Report this post      
Reply by moderator | modératrice
01 Apr 2014, 1:30 AM

Here is a translation of Passirose's message:

Well now it is increasingly difficult to breathe. I use oxygen more often, and for the first time, it feels good. For me, this is another sign that nothing goes as it should.

I choked on "solid" 2 times this week ... among other things yesterday, I was coughing so hard to remove the crumb that with every cough I saw lightning (light flashes) and thought I've fallen in the apples (a French saying). I confess, to my shame that I urinated in my pants ... This time I was able to clean everything, but what if that happens as I get more ill and it is my daughter and her boyfriend who enters the house when I'm in this state? My god that for me is a vision of the Apocalypse .
My face is round, so round that I can not look behind me, and when I do I only see the folds of skin. 

And there are visions of horror, sordid thoughts that begin to trot in my head, as the fateful moment arrives sooner or later, do I really want to have the lucidity that I do now? What will decide when to turn off lights and who decides? 

I'm lucky, my husband helps me as much as possible, he never forgets to take me by the arm, or help me raise my leg. He prepares meals, and always asks me what I want. He tells me about his day and asks me about mine ... He is incredible. 

Well, here this is the only place where I can say things that cause me a little (a lot) of fear ...
Report this post      
Reply by NatR
01 Apr 2014, 2:05 AM

Dear Passirose,

i hope  you  can read this / thanks to Colleen for translating your message.

i am using my phone and it's harder to access google translate.

i am so glad you have your husband taking care of you
it must feel so good to know he is ready to help you with anything at any time.

all I can say is that having a beloved companion with you means the world
for tonight I wanted to say thank you for your bravery and sharing your personal journey.  It's a brave thing to share your reality and your story.

please know that you are cared about by the forum members - I am speaking for myself but I know that there are more who will agree with me - that the forum is a place for compassion and kindness

i am thinking of you tonight and hoping that you can feel the warmth of my thoughts as I send them to you.

you are never alone - you are part of an extended family here
my sincerest thoughts to you and your husband tonight.
Rest ,
Report this post      
Reply by passirose
01 Apr 2014, 3:29 AM

Thank you natR for your kind words, and Colleen you are right about the translation it is already hard to find the words in french, then to type them it seem like a long process.

natR I will use your kind words and thoughts to keep me warm tonight thank you again. xox


Report this post      
Reply by KathCull_admin
01 Apr 2014, 7:14 PM

I wanted to let you know that you have been in my thoughts Passirose, since I read your post. I wish there was something I could do to physically ease your breathing. I wish too that there was some way I could eliminate the side effects of your illness and treatment.

But,  as NatR did, I can let you know that I am thinking about you and I care about what is happening to you and your family. 

Thank goodness for oxygen. Thank goodness for your family, their love and support. 

Report this post      
Reply by chemobrainfog
03 Apr 2014, 3:17 AM

Dear sweet Suzanne,

I'm so sorry about this turn of events.  I'm grateful that your husband is doing everything to make you comfortable.  

I think of you all the time.  I see your posts on Facebook and sometimes, I forget to comment.

You are an amazing person, my dear friend and I wish I could wrap my arms around you and take the fear away.

I send you love.  Lots and lots of love.

Report this post      
Reply by passirose
03 Apr 2014, 4:24 AM

Today a nurse came at home, (last time I saw her was on August 2013) she said looking right in my eyes "did you realize since I saw you there is a huge decrease in your fluidity when you speak..."  she asked me if I knew about Aphasia.  We talked and agree to tell about this problem to the doctor (palliative) and the oncologist.

Then a couple hours later, another nurse (ergonomist?) I know well came to bring a hospital table - you know the one with strollers- and after a couple of minutes she stares at me and told me she can notice the problem she heard on the phone, I'm having hard time communicating, she said it is worst than when we saw last time ... 3 weeks ago...  and look at your right arm it is left on the side while the other is folowing the conversation.

This explain why I encouter problem when it is time to put my signature on a check.. my hand is there, the finger are holding the pen but It is almost possible I have had hard time doing it, it never happen before.   Another example, rolling spaghettis is almost imposible I have to switch hands (I am ambidextre).

My hubby didn't mind about this news.  My daughter took it badly, by the time I was able to explain it all she was in a bad mood, she doesn't have the patience of waiting for me finishing my sentences.  She told me that. I told her I knew.  She went in her room to cry in her boyfriends arms.

That explain also why I have so much dificulties lately writing, particularly in english. I don't know why I put this here, but I felt I had to. Et Voilà. :)


Report this post      
Reply by moderator | modératrice
04 Apr 2014, 1:45 AM

I can't imagine how frustrating this must be Suzanne to see your capabilities being taken away from you. 

Your ability to communicate in writing is wonderful. Your messages are very clear. Does it take longer to gather your thoughts in writing too? Is it difficult to type?

It is hard for children to understand even as young adults. CarolynMarie talked about supporting her children in this thread:

Comfort/ Support or Help for Teens?

It's a lot to read. So many members contributed. But perhaps you'd like to read some of it. 
Je t'embrasse.
Report this post      
Reply by NatR
04 Apr 2014, 2:00 AM

Dear Suzanne

you put me to shame - you are working hard to write your thoughts in English about everything that is happening with you.

it has to be very hard for your family to see changes happening with you.
despite all that is changing in you - you continue to share your notes with us - and keep us aware of what is happening.

i am glad that your support team are watching over you and explaining everything to you - it helps to understand i am sure

i wanted to let you know I was thinking of you and hoping that tonight is a peaceful one for you .
i send my best wishes and a warm hug;)
NatR ;) 
Report this post