Forums de discussion

 
Réponse de Tian
14 août 2012, 11 h 53

Dear Bizzy

I'm sorry to hear about your partner's deterioration just when hope had come on the scene. Yes, you have done very well and even better than you think. It's natural to have had many intense feelings and complex thoughts especially considering your special circumstances so to have resolved many of them is truly remarkable. As I said before you have nothing to feel guilty about. You seem to have achieved some peace for now but the ride is not over and there's a lot more to come so hang in there.  

Tian 
 
Réponse de NatR
14 août 2012, 21 h 22

Dear Bizzy

It is so difficult the road you are on.  Tian is right  _ it's not over so pace yourself.

You are doing great, being supportive to your partner is the best gift you can give.  It's great that you are taking advantage of counseling support as well   Someone with the right skills and an objective eye can be so helpful 

Keep posting and we will keep responding.  Glad that your are finding the forum to be of help.
We all need a hand up or a hug to help us get through the hard times.

My thoughts are with you
Sending you a hug
Sincerely
NatR 

 
 
Réponse de Brayden
14 août 2012, 21 h 36

Dear Bizzy,
I am so encouraged by the new positive tone in your last posting. Tian made a good comment in that important decisions are best not to be made when you are in a deep crisis. It worked in Nat's case but there is no guarentee.
We all seem to see that you are not the crazy one and in need of care but rather your father-in-law is the one. Do not allow people's behaviour like his to influence your self esteem. I just hope that you will manage to keep your chin up and get accurate information soon. Please keep posting.
Brayden
 
Réponse de Bizzy
15 août 2012, 6 h 37

Very hard decisions to make this evening.  Tracheotomy or possibly pass away tonight.

The doctors were going to do a tracheotomy tonight on my partner but because he already ate supper they couldn't do it.  It has been scheduled for tomorrow afternoon.  They said that he might not make it through this night because his throat is so swollen from the radiation and/or the cancer. Because he has not slept properly in weeks they thought he would simply stop breathing. 
I thought I was going to have to stay up all night and make sure he kept breathing but the i.v. steroids they gave him opened up his throat enough so that he could sleep without choking for the first time in weeks.
If I hadn't worked through some painful issues here and had the support I would have been crushed with the response from his father who niether came to the hospital or even talked to his son on the phone.  Instead he just said he didn't want the tracheotomy done. When I explained  it was that or else death he said,"Whatever will be will be." With such a seriously critical decision and such a frozen response I am so grateful I was able to shield myself psychologically. 

Last night one of my partner's acquaintances came to the hospital and demanded that my partner be transferred to the cancer centre here in the city. He was drunk of course and made a big scene.  My father in law simply left in the middle of the melee. I had to go with him because I didn't have my car. I was so confused why he would leave his critically ill son in the middle of this chaos and heartsick that I had to leave against my wishes.  I called the nurse as soon as I got home and she said everything was okay again.

His father's choices lately have left me shocked but at least not surprised. All this time I thought I had the problem but it has become crystal clear this is not the case.  HIs father is a walking example of denial I suppose.


 
Réponse de Tian
15 août 2012, 10 h 53

Dear Bizzy

Your partner is extremely fortunate to have you since his father seems to alternate between abandonment and acting against his own best interests. And on top of that there is the irresponsibility of others to further corrode the situation. It must seem at times like you are in a madhouse. To your great credit you realize what you have to deal with and are acting accordingly. But with the circumstances intensifying it is more important than ever that you not neglect yourself so you can continue to function. You have my utmost admiration.

Tian 
 
Réponse de Cath1
15 août 2012, 21 h 31

Dear Bizzy:

I have been away from the community for the past several days as I was preparing for my daughter's wedding that took place this past weekend. 

I have read your posts and feel your heartbreak and confusion. I am relieved to know that you have had the benefit of professional counselling to help you unravel and to cope with the many complexities of your partner's and your shared situation. I hope you are surrounded by such support as often as is possible. You have deep insight into your own feelings and your heart, Bizzy, and I am amazed at how flexible and resilient you remain as the landscape of your sorrow keeps changing before your weary eyes.

Stay as strong as is possible, which means accepting help and compassion from others whenever and wherever it is offered and made available to you. As Tian gently reminds you, take care of yourself too as the situation you are in seems so very unpredictable, and you will need your energy and your hope to face each difficult moment ahead of your partner and you. 

With affection -hugs- xo
Cath1  
 
Réponse de Cath1
09 sept. 2012, 17 h 55

Dear Bizzy:

I'm thinking of you today and wondering how are things going for your partner and for you? The last time you wrote things seemed to be in a highly precarious state. Let us know, if/when you feel up to it, how things are going in your life.

With affection -hugs-xo
Cath1  
 
Réponse de Bizzy
14 oct. 2012, 6 h 17

Hello everyone,

Sorry for the long delay in replying. I've been doing okay. Its been a rocky rolly road that I handled badly   this last year since the news that my boyfriend only has a few months to live but I've made it through and landed on both feet.   I'm simply amazed, really.

I recently discovered a health problem of my own. I have been forced to focus on me and its taken every last  bit of energy I can muster to deal with my partner's situation and now my own. We're both deeply stressed but I'm expecting things to rebalance once I get my own health concern under control.  My weight went up by about 40+ lbs this last year and I thought I would have to wait until my partner passed away before I could muster the strength to deal with the life changes necessary to lose weight.  That was not to be. I'm developing diabetes and have to lose the weight now.  Just by chance I went into a walk-in clinic to check on a sore on my lip ( Dr., is it cancer? No, its just chapped lips). The doctor. gave me an affordable weight loss program that I can follow and I've lost 15 lbs so far.  I' had to reduce the diabetes medicine dose by half.

Last night I was reading a copy of the results from my partner's recent lung biiopsy which was to determine whether what he had in his lungs was Valley fever or cancer.  I noticed that the copy was of the CT scan and not the biopsy.   It is only by accident we got a copy of this CT scan.  What I read though shocked me pretty badly.  It shows that when my boyfriend fell in August and had to have a tracheostomy that he also sustained some pretty shocking injuries which no one told us about. It said that he had fractured his sternum, 3 vertabrae, some ribs and had injured his pulmonary vein. Again, nobody told us about this.  All this time he's been going to physiotherapy to get his head to go back up and he's had a broken spine and internal injurries?!  I'm so sick with shock and anger and pure disgust.  The injustice of it all. I'm so disgusted with this disjointed health system I can't even spit!

PS: The biopsy said he had cancer in his lungs.
 
Réponse de Tian
14 oct. 2012, 16 h 41

Dear Bizzy

Thank you for updating us but there is no need to apologize because we understand that you have had more imortant things on your mind. I'm very glad that you've been doing OK and hope that that continues but I think you are doing yourself a disservice by saying you've handled the situation badly. You've been very brave to tell us about mistakes you've made and some of them have been doozies. But if I was in the same situation as you I'm not sure if I would have been able to hold on to my sanity (assuming I had any to begin with.) You could have done better but that doesn't mean you've done badly. No one is perfect. And now I admire you for taking on a weight loss program amidst everything

You have every right to be disgusted with the health care system that has come up short all too often for both you and your partner. I can't uderstand why you weren't told about the extent of his injuries when he fell. It may be that taking everything into context the broken bones that he suffered look much worse on paper than the effect they had on his overall condition but for the doctors not to discuss that with you is inexcusable.

I hope that all the surprises are over with and that you and your partner can share your remaining time together in peace.

Tian
 
Réponse de NatR
14 oct. 2012, 21 h 11

Dear Bizzy,

So sorry to hear your latest news.  Tian gave you good advice.  We can only do what we can, and what we have knowledge of.  Give yourself credit for hanging in through the tough times - and bravo to you for surviving those times and yet still having some energy to devote to yourself...that is a good thing.

You are too hard on yourself.  Your partner is lucky to have you in his corner.  I do hope that you can relax tonight, knowing that sometimes we dont get enough information to do the best we can, but that despite the lack of knowledge you have done an excellent job of advocating and caregiving.

Systems fail, paperwork gets bogged down...someone dropped the ball and didnt give you the full story...that is hard to deal with.  I totally understand your frustration.

But one person at a time, people like you are making a difference, and by speaking up about your own circumstance you pave the way for a better patient experience...and a better support experience for the family members.

Hang in there...thanks for writing and know you are being heard;)
sending a hug,
NatR 


Nos partenaires
Questions-réponses
Questions-réponses

Découvrez ce que les Canadiens veulent savoir

Consulter un professionnel
Consulter un professionnel

Notre équipe d’experts est là pour répondre à vos questions à propos des maladies potentiellement mortelles et de la perte d’un proche.

Simplement envie de parler?
Simplement envie de parler?

Participez aux forums
de discussion.

Livres, liens et bien plus
Livres, liens et bien plus

Recommandations de notre
équipe

Programmes et services
Programmes et services

Services offerts aux échelons
local, régional et national

S’abonner à l’Infolettre
S’abonner à l’Infolettre
  • logo
  • © Portail canadien en soins palliatifs, 2003-2024.