360 Hours

Fifteen Days.  That is how many days have passed since Ben’s diagnosis.  360 hours.  And no one has done ANYTHING. Today we saw the spine surgeon.  We were sent there by the kidney surgeon, who had left us with the impression that he needed to work together with a spine surgeon to complete one operation where both the kidney and the tumour on the sacrum would be removed at the same time.  That would be nice, however someone should have informed the spine surgeon of that plan, because clearly he was completely out of the loop. According to him, there can be NO surgery for that.  The tumour cannot be removed surgically, as it is in the bone.

IN the bone, you say?  Because somewhere in the last 360 hours we were assured that it was, in fact, ON the bone.  Not IN it. Apparently the CT shows differently, but no one seems to care to keep us informed.   “I thought the bone scan was the most accurate tool for determining whether or not there was cancer IN the bone?” I asked.  I can’t recall exactly what the surgeon replied, but it was something along the line of, “yes, its strange that it didn’t show up.”  And thats about it.

So where do we go from here?  Well, I’m not really sure because it appears as though no one can get their shit together and decide WHO IS LEADING THIS FUCKING PARADE???  The kidney surgeon to the spine surgeon to the kidney surgeon….who knows.  At least the spine surgeon tried to make some calls while we were there, but no one he tried to reach was available.  We left with the promise he would call us back, and guess what?  No call.

Why isn’t an oncologist involved, we asked.  I guess the oncologists don’t want to get involved until there has been a biopsy so that they know what they’re dealing with.  Well thats nice, except no one has offered us a fucking biopsy.  Instead, the kidney surgeon said that the kidney needed to be REMOVED.  SO REMOVE THE FUCKING KIDNEY!   Then you can biopsy it or do whatever the hell you want to do with it.  I’m not convinced there is even plans for surgery in the works, because of the kidney surgeon wasting time trying to coordinate with a spine surgeon who apparently has nothing to operate on. 360 hours of COMPLETELY WASTED TIME WITH NO ONE DOING ANYTHING WHILE THE CANCER JUST DOES ITS FUCKING DIRTY WORK.

I feel completely ill.  At the time we left the spine surgeon’s office I was in a better frame of mind, because the process seemed simple (remove the kidney, treat the metastasized site with some new, cutting age treatment and then the sacrum that is currently being eaten away by cancer will grow back).  But now, I confess to wanting to lean over a bucket and start heaving because no one is taking the lead and getting the ball rolling.

I have lots of friends / family in the medical profession….CAN ANYONE TELL US WHAT THE HELL IS GOING ON?????!!  Is this not the ‘cool’ cancer?  Because all the people I’ve known with other types have gotten their treatment plan and treatment quickly.  I don’t recall hearing about this kind of complete shitty mess with no one doing anything. 360 hours of waiting is only tolerable if there is a plan in place.

Tomorrow I will not stop until I have some answers.  I want a surgery date – NOT at the end of May!  I want it now.  Take the fucking kidney out.  GET IT OUT!  Then get us into an oncologist and lets get this ball rolling.  Oh…thats another thing.  The spinal surgeon told us to talk nicely to the assistant in the kidney specialists office, and maybe we’ll get an earlier surgery date. Is this how it works now?  Maybe I should buy her a bottle of wine and drop off some flowers.  Maybe I can offer her the trip to Palm Springs I was supposed to be heading off to next weekend?  Will THAT buy my husband an earlier surgery date to save his life?  Or shall we all just sit around with our thumbs up our asses and hope that cancer doesn’t spread more by the time anyone gets their shit together.   FUCK YOU CANCER .

IMG_9966

(believe it or not, this is actually an older photo.  Because this is how the Saint-Onge’s roll every time I try to take their pic.  In the past it annoyed me to no end.  Tonight it seems fitting)

17 thoughts on “360 Hours

  1. The waiting is one of the hardest parts. I waited too. It never seemed quick enough. Even after the tumour is removed, there is more waiting. Sorry. It does suck I know. But normal. one day at a time. ..you guys can do it! You got this. …Carrie

    Like

    • Carrie…its not the two weeks…its the two WASTED weeks with no one doing or planning anything. It would be tolerable if they were getting a plan together, but this guy didn’t have a clue that the kidney surgeon thought they’d be operating together. He was like “I cannot operate on that”. No one has taken the lead. WHO TAKES THE LEAD???? WHO COORDINATES? I’ll take on the job of coordinating if they need a fucking leader. Just do it!

      Like

  2. And I recall driving you to the oncologist, early on, where you had a lengthy appointment. So long that you got a parking ticket, remember? So why isn’t anyone banging down our door to meet with us? Where’s that long appointment for us so that we can understand what the Hell is going on??

    Like

  3. After re reading that post it occurs to me that I am not exactly grace under pressure. Sorry/not sorry if I offended

    Like

  4. You are entitled Wendy….sometimes we need the energy from anger to push us toward the ultimate goal…..make it personal because it is…..get the answers of which you and your family are entitled…..NOW……xo

    Like

  5. So sorry that it’s so frustrating, Wendy. I hope today is a better day with some better news and more answers, I’m thinking of you guys and sending positive thoughts. And pfft, grace shmace.

    Like

  6. Yes you drove me to that lengthy appointment but that was way after my surgery…like 3 weeks after my surgery. And we visited with a surgeon who ended up not even be a part of the surgery. I do feel and I understand the frustration, totally! Diagnosis early January and met with oncologist in March. Faith my friend.

    Like

  7. Fight kick and scream Wendy. Squeaky wheel gets the grease. I don’t get the wait. When they found Jameson’s brain tumour, he was flown to Children’s the next day and had surgery the following day. This wait is unacceptable!!!!

    Liked by 1 person

  8. Wendy….one of the things I always admired about you, is your persistence and passion when you feel strongly. So fight and do what you do.

    Love you.
    Beth

    Like

  9. Morning, Wends. I’m available to take you anywhere today you need to go.
    Make some calls and lets make things happen.
    I can’t believe this is happening.

    Like

  10. The treatment you guys are receiving is unbelievable…. And unacceptable. I want to kick the surgeon for suggesting you have to be nice to the receptionist to get a quick appointment. Is he kidding? That is so insulting. They should be calling you! You can do this this Wendy. Fight Fight Fight….. Make them hear you, see you, listen to you. I know you won’t stop until a plan of action is in place. It’s exhausting and frustrating and not fair but even in the U.S. We have to fight to get the health care attention we need and want. It shouldn’t be that way but once you get all the doctors on the same page shit will start happening. Stay strong!

    Liked by 1 person

  11. I spent some time last night with some rescue horses that are terrified of people and have been horribly neglected. I just stood there in the field and watched them around me . Most of them just continued to eat their hay and watch that I didn’t get too close. But one looked at me for a few minutes and then slowly walked over to me. I reached out to pet him, but clearly he wasn’t ready for that, so took he took a few steps back from me. He slowly walked back and just stood beside me. Didn’t do anything, he just stood there. We stood together for about half an hour . At that moment I felt this amazing strength for you guys and your kids. That horse was trying to tell me that all is going to be ok.

    Over the past couple of weeks 3 am is the time I wake up and think of you guys. Well last night was no different, but this time my 3am thoughts of how the next few weeks will play out we’re very positive. I wanted to call you and tell you, but I figured sleep isn’t an easy thing in your house, so I am sharing it now.

    And no I’m not drinking :):).

    Love you all!!

    Liked by 1 person

  12. Wendy, I’ve been thinking of this post. We have had conversations about the abysmal access to mental health and drug addiction programs for youth and how we both had to go private to get help for our kids, (which is so wrong) but it has occurred to me that at least going private was an option….the waiting to start treatment / get answers must be excruciating, hoping you get answers and action soon. S

    Liked by 1 person

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s