Saturday, December 5, 2009

What they don’t tell you….In the beginning you’re not told much - for your own good – too much knowledge would have you all running from the exam room screaming “no bloody way will I let them do that to me!” Once, however, the surgery’s been done and you’re really into the middle of the journey, you would think someone would start to tell you what was happening, what would happen and when to expect these happenings??? Nooooooooo…..they funnel you along from room to room, building to building, treatment area to treatment area, all repeating the same charming lie…all is ok….you look well today….keep your chin up. You’re doing well.
The fatigue is so, so bad the poor man can hardly stand up. The weight loss is quick and beginning to show. The look on friend’s faces when they see him says it all. For a brief second they are aghast. The radiation burns they said would not be too bad at the beginning are currently turning his skin and neck and face black. He looks like a Hiroshima ground zero patient. The ENT nurses are surprised at this. They tell us this is one of the worst cases they have seen. He can’t swallow now so we’re back total tube feedings. His neck is too painful to touch and twice as painful to look at. It reminds me of the molten lava one sees on a National Geographic program; the skin is so black you see the bright red streaks of new, tender yet burnt, skin breaking through the darkness. The office staff looks at him and cringes-the medical staff is doing the same. It’s only the doctors saying how well he’s doing. All but the chemotherapy oncologist who says “oh yeah, it will be back in 18 month-to 2 years. 100% guarantee on that.” Would it be too difficult at this point to tell us what’s around the next bend?
Whatever they are roasting and burning in the throat is also affecting the trachea and lungs. He coughs up “Aliens” – large, strange, burnt, gloppy shapes that seem to want to stay around a bit. Would’ve been nice to know that small tidbit ahead of time. Also knowing the donor site is going to hurt tremendously from waking to sleeping would have made things a wee bit easier. Knowing that we will probably never again be able to go out to a restaurant, a ball game, a formal dinner……yeah – that’s something they could have told us ahead of time.
The disfigurement is so demoralizing. People stare at him wherever he goes. The scars on his neck are like neon signs pointing straight to the gaping hole in his neck. Covering it with a white foam stickey attracts even more attention. Then they see the long patch of grafted skin on his wrist and forearm and the matching scar that runs up his entire arm. The stares are painful and insulting. Those that will speak to him talk to him like he’s mentally deficient and deaf. That only adds to the pain and despair.

He hurts so much. While others patients have become friendly with others sharing their plight, he sits alone. He is so isolated – no one in treatment has had his surgery – there is no one to share treatment stories with and draw support from. He can’t talk; can’t eat and now can’t walk without a cane. Yesterday he had to cough while in the treatment waiting room and was told by the volunteer there to “take that into the bathroom – no one wants to see that.” All he had done was cover his stoma with a handkerchief and cough – the same as anyone else does - but he has to cover his neck instead of his nose or mouth. He is miserable and depressed. He wonders if he should not have had the surgery –if he should stop treatments – if he should just give up.

I wish there was a quick-fix. I would risk life and limb to get it for him, but I know there isn’t. I know this is something he must endure and I am doing my best to make his days easier and soothe his worried mind. I’ve been around emergencies and medical difficulties all my life but nothing has prepared me for this. I keep digging deeper and deeper into myself to find strength and encouragement for him. Please, God, don’t let that well run dry.

10 comments:

  1. Quieten, your fears and thoughts have generated feelings of compassion in me so great, I find it difficult to express them. Nothing we say can make it better for your husband; my husband having had colon cancer surgery and chemo was hard to endure,radiation sounds so much worse. Many have endeared it though...all I can say is to look up, both physically and mentally, be his strength while you both endear this time in your lives.

    It's good that you can come here and express yourself so freely, isn't it?
    Take care,
    Wanda

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  2. Quieten, oh I knew this day was coming although George's radiation sounds much worse than mine....mine was like a minor sunburn, it was the chemo that knocked me off my feet.
    I know this all seems overhwhelming right now sweetie and I certainly understands how you and George feels....but hang in there, it will get better. Even if they had told you Quienten you would not of been prepared, nothing prepares anyone for the battle with cancer, it is a horrible disease.
    God willing George will heal, his surgery marks will fade, he will have new teeth and will be able to eat properly...The is the worse before it gets better time I was telling you about.
    Just know I am thinking of you and holding you both in my heart and prayers. Stay strong my friend George needs you right now and we will be here for you.........:-) Hugs

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  3. Dear Quieten,
    I have been reading your blog for sometime now and I heard about you from Margie. My father had colon cancer and a dear, dear friend of mine had breast cancer. I know exactly what you are going through. It is so hard to see the ones we love so deeply to have go through all this. The only thing we can do is just continue to give our love and support . I know that is what helped my friend, Nancy through all the difficult times. Take care and be strong.
    The best to you and George.

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  4. Wanda,
    It is wonderful to be able to "vent" and share here. When I started this blog I thought I was so alone and this was going to be a way for me to come to terms with the daily frustrations. I had no idea it would open me up to a whole new world of caring, understanding and loving people.
    Huggz,
    Quieten

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  5. Oh Bernie, You are such a sweetie. George's chemo has not been any trouble for him-for that I am truly grateful. The radiation has been a bear. I remember your earlier words about going through this and they have helped. I know this will get better but boy, it sure is rough going sometimes. :-)
    Huggz,
    Quieten

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  6. Hi Choices,
    Sorry to hear about your dad's and girlfriend's battle with cancer. It truly is a difficult road to travel, isn't it? I am humbled by the love and support I have received from my blog friends.
    Please say Hi to Margie for me and tell her I'm thinking of her and wishing her well.
    Huggz,
    Quieten

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  7. Oh, Quieten....Radiation is horrid...and I think sometimes they don't tell you stuff because they don't really know...not having experienced it themselves, they only know what patients tell them or what they read...And what George is going through is simply terrible...

    For the most part, your greatest encouragement will come from others walking just a little ahead of you, or those who have walked the same road previously...Poor George...people do look at you strange, and treat you as though you're some kind of alien...I'll never forget when my neighbor asked if she could leave her 8 year old with me to walk to the bus stop on a day that she had to go to training for her employment.

    I said "yes," but when she brought him over...he clung to her, teared up, and didn't want to come in...and in fact didn't want to be seen with me at the bus stop...and here I thought I was doing my best to look "normal." But cancer treatment is what it is...horrible.

    Yes, Bernie is right...it seems interminable now...and George may feel like giving up...After all,the mountain before you both blocks the view of life on the other side...but there IS life AFTER treatment...you are both stronger than you know...

    I finished treatment 2 years ago...those were the longest 12 months of my life...but they are behind me now...and they will become history for you and George, too, although there will be a lot of rough days before it's over... And so, in the meantime, we're all here for you...and praying like crazy for the both of you!!!! Love you much, Janine XOXO

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  8. Janine,
    I will hold onto your words..."they will become history for you and George"....Knowing that times will improve is what makes each rough day bearable.
    Huggz,
    Quieten

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  9. Dearest Quieten...just stopping by to see how you are...Love you much, and praying for you all throughout the days...Janine XOXO

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  10. Dearest Quieten, I wanted to stop by to wish you a Merry Christmas...I hope and pray that George will feel well enough to enjoy the day...You are both in my thoughts and prayers. Sending you much love ~Janine XO

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