First Anniversary Cancer Free! :)

07/10/16 - Well, on a happier note, I have officially made it to my first year anniversary of being cancer free (my limb sparing & life saving surgery was exactly one year ago today!), and I am happy to say that I have finally calmed down from last week! I have decided I will go to my next appointment, but just take their lead and let them do all the asking.  I figure this way, I will at least be able to get all the tests that they are willing to prescribe me for the time being.  Hopefully, the appointments will go more smoothly that way without them making me feel like a five-year-old!  I've also decided to mark the occasion of my first anniversary of being cancer free with a tattoo. Now just to decide exactly what to get!  For sure it'll have the yellow ribbon that symbolizes sarcoma, plus it’ll most likely have a butterfly or flowers. It will also feature some lyrics from, yep, you guessed it, Placebo!   I am also going to take part in the #KnowSarcoma campaign one of our national cancer organizations has going on for sarcoma awareness month (July), and I am also going to contact the cancer society to see what would be involved in becoming a peer support telephone volunteer. I would really like to be able to give back to new sarcoma patients who undoubtedly have a million questions like I did after I was diagnosed.


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A Bitter Sweet End to My First Year as a Sarcoma Survivor.

07/04/16 - In six days, it’ll be a year since my surgery to remove my 25x13x8.7cm myxoid round cell liposarcoma from my left thigh, and today I went for my latest four-month checkup at my local sarcoma clinic, where the oncologist said my tests were fine, despite that inconclusive bone scan, about which he said the radiologist was just being overly cautious.  I keep telling myself I should be celebrating completing a year of NED (no evidence of disease), but sadly, today’s visit just left me feeling frustrated & fed up.

***WARNING: RANT ABOUT MY LOCAL MEDICAL SYSTEM* BELOW***  There probably isn't much useful info to follow in this post, I just really need to vent!

Frustration #1: First I saw the resident doctor (Dr. #4) who was awesome, but then I was told my oncologist’s was still away, so I’d be seeing another oncologist (let’s call him Dr. #3) who was semi-retired. Oncologist #2 who I’ve seen a few times when mine was away was in the process of taking over Dr. #3’s practice.  BUT…then when the resident doctor came back, Dr. #3 was nowhere to be seen!  Instead he came back with Dr. #2!  Dr. #2 is the other oncologist that I wanted to get a second opinion from.  However, when I asked about getting a second opinion from him a month ago re: my surveillance plan, I was told there wasn’t any point because both he & my regular oncologist (Dr. #1) collaborate on everything.   Also, when I asked a month ago to move my appointment forward, so that I wasn’t stuck waiting a month to discuss my results, I was told it would be better for me to see my regular oncologist when he returns from vacation…yet lo & behold, who do I get today but the oncologist I wanted to see a month ago but was told no!  So why then did they make me wait a month when they had an appointment available sooner WITH THE DOCTOR I SAW TODAY?!?!  I KNOW they had one available, but they specifically didn't book it because Dr. #1 was still going to be on vacation!  Blah.

Frustration #2: Then while the resident doctor (Dr. #4) made me so happy by telling me that Dr. #3 would likely order an MRI based on the results of my bone scan, Dr. #2 comes in & says if it was up to him, he would NOT recommend any MRIs EVER until I start presenting symptoms, because we have to be fiscally responsible within the constraints of our country's healthcare system!  He also said he’s worked in the US healthcare system before, and that American oncologists order way too many scans & that it’s just not sustainable.  He even said doctor's in a certain sarcoma centre elsewhere in our country order too many scans!  So, one doctor tells me one thing & the other tells me another IN THE SAME APPOINTMENT!  So, here's me stuck in the middle wondering do US doctors order too many scans as a money grab, but then do doctors in my country not order enough scans to save a buck & is the right number of scans somewhere in between?  I don't know what to think anymore!!! :(

Frustration #3: Now, to be fair, Dr. #2 did say that he would order an MRI to help “ease my brain” (yes, he actually used that phrasing!), but he made me feel an inch tall for even wanting an MRI & for daring to QUESTION things, that I decided just to forget it & get the hell out of there.

Frustration #4: Ah but there’s more.  On the form they have you fill out whenever you go there, they ask if you’re experiencing any pain.  I have been, so I told him about it but yet again, was made to feel an inch tall, even though I reminded him that I had discomfort in my leg for nearly a year as a symptom of my sarcoma before it was found, so now I bring up anything that lasts more than a month or two JUST TO BE SAFE.  Yet he still made me feel an inch tall for bringing it up.  There were a few other things he showed complete lack of sensitivity to, but I've decided to just leave it at this.

So yeah, I should be happy,but right now I’m just really, REALLY pissed off.  Sorry to bitch & complain, but I figure this is more constructive way to deal with my feelings right about now.  I was so upset earlier, that I had a good mind to go to my next set of scans, get the assistant to email me the results like she normally does & then if they turn out okay, just walk away & not bother with going in for my next appointment.  Another part of me thinks, “Oh, just put up with it for one more year & then walk away”.  But sadly, I am well aware how important it is to get the scans they are willing to give me for the rest of my life. I just really don’t feel like dealing with THEM anymore.  I wish I could just have the scans & only see the doctors if they find something, but sadly, they won’t allow that.  I’m still THIS close to just walking away, though.  If they want me to just shut up & be a good little patient who doesn’t ask questions & save money by doing fewer scans, fine.  I just won’t go.

ON A HAPPY NOTE, there was one other thing that went right today… They FINALLY removed the non-desolvable stitch that’s been in my leg for nearly A YEAR! :) :) :)  I tried removing it like I removed a few of the others they missed but my arm is too short to hold the stitch in place while I cut it out with the other hand, LOL!  So, yay, I’m NED for one year & counting & that damn stitch is finally out!  :)  Gee, I feel better already, and I haven’t even posted this yet. :)  Thanks for reading this if you actually got this far & sorry again for being so grumpy.  I’m sure I’ll feel more positive in a day or two.  Oh yeah, and I just realized I just have one more batch of tests to get through before my trip, so YAY!  OK, now I feel even happier, LOL!  Yep, just give me  my favourite band!  They make everything better. <3

One more thing! Despite my venting in frustration above, I feel very grateful to be NED & even though their bedside manners leaves a lot to be desired at times, I really do have a great medical team.  I’ve been told my scar is a very “nice” scar compared to others people have seen (and this is medical people telling me this!), plus I never had any complications, no infections or anything like that, whereas I hear loads of stories about other sarcoma patients having infections & all sorts of complications.  So, for that, I am truly grateful, and I’m well aware life could be a lot worse.  At least I have my leg, I’m NED & did I mention I get to see my favourite band in a few months?!  ;)

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Have a sarcoma blog of your own that you'd like linked? Feel free to drop me a line or post your link in a comment below.