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Viewing 2 posts - 16 through 17 (of 17 total)
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  • #18138
    Ieva
    Participant

    Hi Lisa and Gord,

    I too am a caregiver (wife) of my husband Malcolm, who was diagnosed at age 64 with muscle-invasive bladder cancer. Prior to surgery, he was active, fit, and had never had any surgery. He had chemotherapy after his neobladder surgery, as his pathology report showed lymph node involvement. The GOOD NEWS is, all his tests thus far (3 years) are cancer free.

    His surgery was just over 7 hours. No complications. I went to the hospital with him, stayed until he went to the OR. I left the hospital to keep myself busy and distract myself. They had my cell number to call me when he went into the recovery room. And then I returned and stayed. He was in hospital a week. His surgery was in Toronto, St. Michael’s Hospital. I would arrive each morning around 6:30 am, as the surgeon’s do Rounds before they start their OR day. I wanted to be there to watch and hear the doctor’s examine Malcolm, as well as be able to ask questions. For me, it helped me learn and understand. When visitor’s came, I would leave for a bit – to give me time to try and care for myself, as I have diagnosed health conditions as well. I would stay with Malcolm until he fell asleep for the night – I asked the nursing staff if I could stay past visiting hours, and it was ok.

    CCAC Toronto assigned to us an RN with specific cancer treatment knowledge. Your area may also. I think it is important that you have the time and energy for Gord, your relationship and caring for yourself, this trumps any promises made prior to caring for relatives. (In my previous life, I was an occupational therapist andmanager of chronic diseases and medicine clinics at a large hospital outside of Toronto…so my apologies if I am sounding clinical…I do have a heart, and as a caregiver, have different perspectives, even though i am also a cancer survivor).

    Happy to answer any questions, share any details with you about our journey, to help you with yours.

    Kindest thoughts for you and Gord,
    Ieva

    #18139
    Gord
    Participant

    Lisa and Gord – yes, Dr S is terrific as is the 7th floor staff at St Joe’s! Glad to hear the report on the CT scan. And good to dream about next year – my wife and I took a three week trip to Europe this summer, 13 months after my surgery, so think positively! Here are my 2 cents on some of your Q’s and some other thoughts:

    1) I had to be at the hospital at 6 am for the 8 am surgery, prep was a little different than other procedures only in that they gave me an epidural and then I was out pretty much til they took me to my room! My surgery was 7 hours.

    2&3) my wife stayed at the hospital all day along with our 23 and 21 yr old daughters, was good for someone to be there, great for support, distraction and company, they went for walks around the block, trips to the in hosp TH’s, if you have an ipad or laptop there is free internet in the surgery waiting area – and Dr S was really great about coming out and giving a report of how things went afterwards.

    4) you are NOT being selfish – this is a long road and some of these steps are hard, let alone trying to do it alone, so ask for support when you need it! Gord will be out of it and of no help during the surgery!

    Other thoughts…
    – Gord will be pretty groggy when he gets to his room, I was glad to see the family there, but honestly do not remember much about that day
    – post surgery day, my wife came and spent all day with me each day, trying to be there when the intern team came around 7 am and again at 4-5 pm. Not a lot of information is given other than at that time – she drove to and from Cambridge each day, which was a big committment
    – the physio came the day after surgery and got me out of bed, wasn’t painful, just mostly uncomfortable and a little awkward
    – i woke up with the following tubes: iv in my arm, oxygen for my nose, epidural in my back for pain control, catheter in the usual place, catheter and stints out of the right side of my stomach to drain the neo bladder, and another on the left side to collect blood, and a lot of stitches. It was surprisingly manageable, each day something else was removed, and I and went home with only the two catheters.
    – I had an ipad with me, with netflix on it which was really great, especially after my wife went home and I faced hours with not much to do, we played cards, did some reading, had a few visitors, but I tired easily, so its good to keep the visits short
    – a key to recovery is to walk in the halls, a lot, it was good to have my wife with me doing that the first couple of days, for encouragement, nagging and support.
    – once I was able to handle it, it was nice to have a shower and shave in the bathroom
    – your room mates can be really great, or not, I had both kinds, had to remember they were sick too and needed help too
    – he will be on liquids the first day or two, until he has a bowel movement, and then they start bringing solid food, which I ate slowly and carefully
    – my wife brought a pillow for me to sit on going home, which was lovely

    All I can think of for now, have some advice for going home too, most of which I will save for later, but two tips. I had a pair of those breakaway athletic pants for going home from the hospital, and for my walks around the block, bought them at VVillage. And my sister in law made me a nightgown for home, which had buttons down the sides, for easy access to the catheters, made things a lot easier,

    I will post again about some of my experiences once I got home.

    the other Gord

Viewing 2 posts - 16 through 17 (of 17 total)
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