GCT – Giant Cell Tumor – 3 Months Post-Op

Today marks 3 months post op on my tumor.  Random musings follow.

  • I found some GCT support groups on Facebook, but I’m somewhat loathe to recommend them.  Just as when I found support groups for SIBO (another condition I have), I worry that the their memberships are skewed toward more complicated/difficult situations.  This only makes sense, as people who are experiencing protracted complications are far more apt to seek out support communities then are those who’ve had a relatively trouble free experience.  Reading frustrating story after frustrating story can be frightening and, frankly, a bit demoralizing.  I think it’s important to remember whenever joining a group like this that a significant percentage of its population seem to be having a hard time doesn’t necessarily translate into a significant percentage of everyone who has had this condition having a hard time.  Some people get a GCT, get surgery, get better, and move on.  Success stories don’t often join a support group.  They don’t need it. Meanwhile, members of the support group post things like this:Presumably because their experience has been such that, to some degree, their GCT defines them.  This is not a criticism – I totally understand.  However, personally I’m not interested in letting the negative aspects of my life define it.
  • That said, the medical estimates of 20% chance of re-occurrence is a spectre that’s hard to shake, at least for me. I’m undoubtedly going to be anxious prior to every x-ray.  It’s hard to not let it invade my thoughts.  Even harder when perusing a support group and seeing story after story about re-occurrence.  Hence the caveat on joining some groups.
  • I did notice in reading other people’s stories that recovery seems to be all over the board.  Some people remained on crutches for 2-3 months after their surgery.  Others were getting back to jogging by month 4. Obviously the complexity and intensiveness of the procedure varies from person to person, as does the location of the tumor (though tibia and femur seem extremely, if not most, common).  Age and overall fitness level weigh heavily as well.  Young folks heal faster and better.  Older folks heal faster and better if they’re otherwise healthy and take care of themselves.
  • Personally, I’m back to poor, interrupted sleep after about a week of finally getting some decent rest.  I don’t know why.  It aches more at night, and I find it difficult to get comfortable.  I’m back to waking up every hour or two.  It’s quite frustrating.
  • I’m finally experiencing noticeable improvement day over day.  Admittedly, I’ve come a *long* way from just a few months ago when I couldn’t walk at all, but despite the obvious progress it felt somewhat imperceptible, I suppose because of the constant pain and the exhaustion and frustration. There are times now, finally, where I can be sitting and working and realize that at that moment my leg’s not bothering me at all.
  • Rehab, however, remains frustrating.  I was placed on crutches practically the moment I was diagnosed, for fear of my own body weight breaking my tibia.  I’ve been rehabbing practically since the surgery, and yet my leg is still a spindly, wobbly, jiggly shadow of its former self.
  • The weather *really* effects it.  Cold days suck.  Really cold, wet days absolutely suck.  Stiff, sore and tender.  I understand why people retire to Phoenix and Florida now.
  • My day job exploded with work about 3 weeks ago, and that’s turned out to be a blessing in disguise.  It has forced me to work through the disconnected malaise that I’ve been fighting since the surgery.  I still forget things, and find that I can’t use my calendar too much, but my brain appreciates the forced engagement.  There was a period where I was ready to retire, and I’m nowhere near the ability to do so.
  • In that vein, I think it’s important for me to mention that I’ve struggled with depression since well before this GCT episode.  It inevitably colors all of my experiences, including this one.

That’s it for now.  Happy 3 months post op to me.

 

One comment

  1. Maria Kelley

    I have GCT as well and I have had surgery in early August – I would like to show a lot of support for you and hopefully by now it’s a lot better. I love how thorough you are about all sides of support groups and epidemics and such. I’m currently still not weight-bearing on my leg and I also have depression.

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