Sunday, October 6, 2013

Two more week delay

Sorry, I know I should have blogged sooner, but frustration has seriously taken over.

I did make a physical appearance on Wednesday to Humber River hospital to the Patient Relations Department.  They basically confirmed everything that the doctors have been telling us.
"your husband was the first patient to ever receive Dpace chemo at this hospital"
"Should never have happened that first time"
"it was a special situation"
"Mrs. G....., I'm very sorry this happened to you and your husband"
I guess you can argue forever about this, but it really doesn't change anything.
I guess I can fight, fight, fight, but realistically, it won't change anything.  We are now taken care of by PMH, so he is in very good hands.
Tuesday, we both did a meditation session to basically calm ourselves.  Regroup our thoughts.  We went to Tony's cousin's place, BlissOm, which offers a holistic living centre. (http://www.blissom.ca)
All I can say, is thank you Lori, for a wonderful experience with my husband.
Wednesday, the homecare nurse was changing Tony's bandages and commented on the pus coming out of his wound (very little) and suggested he should get looked at for a possible infection.  This happened once before, and we were sent home with nothing to be concerned about.
Thursday, we had our appointment with PMH downtown.
Plan is to begin Dpace Chemo this Monday.  At the end of the speech, he asked if we had questions.....yes, take a look at his bandages on his right nephrostomy wound......Well, chemo was cancelled immediately.  Possible start of infection.  No way he can get chemo.  They took a swab of the pus and sent him for more blood and urine tests for culture to see the type of infection.  In the meantime, PMH prescribed oral antibiotics for 7 days.  Plan is to do the chemo Oct 14.....but after talking with the urologist, it was decided that he begins chemo on October 21.
Huge disappointment. HUGE. Perhaps the first chemo delay was a blessing in disguise?  What if he had started the original chemo last Monday?  This wound would have excelled pretty fast, I think.  Still, a huge disappointment, but the right decision.  The urologist ordered a different type of antibiotics.  Four pills a day for 14 days.  (Apo-Cephalex Cephalexin)
We have a follow up appointment with urologist this Tuesday.  I believe she's going to order to have the nephrostomy tubes removed.  Give him time to heal the wounds and begin chemo.  We will find out more on Tuesday.  The results on cultures should be done by now.  I'll be phoning the hospital for the results tomorrow.
As for how is Tony feeling, well, he continues to be a very brave man.  Always positive.  His breathing continues to be normal.  His hemoglobin is still over 100.

I've had such a heavy heart this past week.  Anxiety, worry, disappointment, anger.....not really healthy.
My sister-in-law has found a Multiple Myeloma support group in Toronto.  The meeting was Saturday.  I was very nervous about maintaining my emotions prior to attending.  But I knew that going was the right thing to do.  To get some positive feedback.  To get me (us) back on the right frame of mind.  Being with my sister-in-law at the meeting, (the best supporter I have right now) gave me the courage to go.  I met others with Multiple Myeloma.  I met spouses, like me, who shared the same struggles that I have.  The guest speaker was a representative from Wellspring.  What a great place.  I'm going to share what their brochure describes.  This is for those dealing with cancer (I'm linked to other cancer blogs) can go to.
From their brochure:
"Wellspring provides a wide range of cancer support programs and services, at no charge, to meet the emotional, social, psychological and information needs of people living with cancer and those who care for them."  www.wellspring.ca
I just may tap into this support group!  Wonderful!
I left the meeting with all my anxiety, anger, disappointment all lifted from my chest and shoulders.
Thank you Fior, for finding this group.
Thank you Fior, for just being there for me and making my own decision to go, when I was ready.
Thank you Fior, for just listening to me.  Just knowing that you're there for me, means volumes.
And, now I met others who know what I'm going through.  What we are going through.
Come on tomorrow.  I'm ready for you.
Before I sign off, I need to share something I just read, which actually inspired me to blog tonight.

If you are depressed, you are living in the past.
If you are anxious, you are living in the future.
If you are at peace, you are living in the present.






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