07/30/15 - Wow, where has the time gone? It’ll be two weeks tomorrow that I’ll have arrived home from hospital! Been wanting to write in here but am so fatigued most of the time that I just never seem to get around to it. Feeling unusually awake right now, so I’m grabbing the chance while it’s here before that pesky urge to nap creeps up on me yet again! Please bare with me if I’m not as eloquent as I usually am! I’m on five different meds right now, down from six, as one ended yesterday! Anyway, hopefully I don’t babble too much & this will actually make some sort of sense! :p
So, my surgery went well three weeks ago, despite taking twice as long as expected & being very difficult & complex due to my sarcoma being wrapped around a nerve. Remember my friend’s hypothesis that my discomfort was due to my sciatic nerve? She wasn’t far off the mark, except this was obviously more than your average case of sciatica! The way my oncologist described it was, they had to “peal it (the tumour) like a banana” in order to preserve the nerve, but luckily they were able to do that in one piece, so as to lesson the likelihood of the cancer spreading.
As I regained consciousness, I awoke to 30 stitches running from my buttock to the back of my knee, two drains (knee & backside), a lot of swelling (edema) in my leg (foot included), a sizeable chunk of my hamstring muscle missing, neuropathy in my left foot & some awesome painkillers, pain pump included! Oh, and no more evil alien living inside my thigh!!! :)
They actually warned me the neuropathy (nerve damage) may occur & may or may not go away with time, but so far there’s been no improvement, so I’m just learning to live with it. So far, it’s more uncomfortable than it is painful, though once in a while, the irritation borderlines on pain. The best way I can describe it is if part of your foot was half a asleep…yet the pins & needles feeling is most pronounced when something is putting pressure on my foot. Even something as light at bed sheets is annoying! God help me when winter coms & I have to wear socks!!! But, like I said, you just get used to it. Other than that, my leg is extremely swollen right now. My oncologist says the edema will take roughly six months to dissipate, but my recovery & medical leave will be about three more months if all goes well.
As for the pain in my leg, it has its moments, but the meds have been working quite well to keep that “bubble” going, where I don’t have too much pain while not moving. However, I do get sudden shots of pain while walking (especially long distances), and sitting for long periods of time is very uncomfortable. I also have to sit on a pillow ALL the time, placed on a firm surface for stability & to minimize the irritation on my drain site & stitches. The larger drain site on my backside has been the most significant source of pain so far. More on that later! Meanwhile, parts of my leg have significantly reduced sensation, whereas other parts of very sensitive! I think of it as a mixed blessing, as there are many sensations right now I have no desire to experience! :p Probably the oddest sensation I do have right now, though, is the feeling as if someone stuck a bunch of cotton candy in the back of my leg. Not sure if that’s the edema, nerve damage or both, but the inside of my leg just feels like a giant sponge. Currently, I’m barely able to bend my knee, nor can I bend over. My remaining muscle is also very weak, so I always need to grab onto something to stand up, sit down or climb stairs. As for nerve pain, I do get occasional discomfort in my back, which I’ve noticed is increasing over the past few days since i’ve begun reducing the Tylenol 3’s with Codeine. This could also be related to the fact I tense up when my drain site gets irritated. Let’s just hope it’s not a sign of things to come!!!
To my shock & amazement, they actually had me up & walking the day after surgery with the aid of a walker! I thought they were crazy, but apparently they do this to everybody! It’s worth noting, it took two people to get me out of bed for several days after surgery, but eventually, I graduated to one person & then eventually was able to do it on my own with just the aid of an ingenious tool, courtesy of the hospital’s physio team - a foot loop that allowed me to support my leg& hoist it along while I dragged the rest of me out of bed with the aid of the bed-rails. Getting in & out of bed actually hurt more than the walking did. When I say walking, though, it’s more like waddling! “Quack, quack” <incert duck sound here>! :p They started me off with a walker, which I still use now for longer distances, since I can barely bend me knee & am unable to bend over. In other words, if I fall, I’m not getting back up, so hence the walker. Being visually impaired on top of all that, adds even more reason to use the walker, especially while out of the house. About five days after surgery, they also taught me how to use the crutches, which are less steady, but are necessary for stairs, since a walker won’t fit most standard-sized stairs, and if I’m leaving the house alone, I can’t exactly take the walker with me. But if I’m getting a ride somewhere & we’re going somewhere that’s accessible (has a ramp or elevator), I’ll always choose the walker over the crutches. It’s also much faster than the crutches! Like about twice as fast! But my house has a LOT of stairs, so the crutches were a must have. I actually bought them outright but am just renting the walker. Hopefully, I’ll eventually graduate to just a walking stick (or in my case a support write cane for the visually impaired) or better yet not need any extra support at all. But time will tell on that one.
Other tools that have come into my life post-surgery include: an extra long-armed reacher, a sock-aid, extra long shoe horn, bath transfer bench, commode, two shower grab bars, the addition of proper physical railings on one of my stairways that previously only had wall carvings that functioned as a railing, and as previously mentioned, that handy-dandy foot loop, walker, crutches & lots of lots of pillows! Also bought a recliner, to help combat the edema, rather than having to pile a mountain of pillows all the time on the bed or couch. This way I can watch TV (if I manage to stay awake!) & battle the edema at the same time. :)
Now back to those darn drains. The first one (near my knee) was small & a piece of cake to have removed. The second one (on my backside), on the other hand, was the complete opposite! It was nearly a foot long & to say its removal was painful was an understatement! On a scale of 1-10 for pain it was a 20. It was so bad, I actually sobbed like a baby when they finally took it out, which by the way, got delayed because my leg had so much drainage. But finally, they took out out 17 days after surgery. It was also on that day that I learned, I am officially cancer free!!! The toxicology report came back negative & showed clear margins!!! :) So, it was a bitter sweet day! But the pain of that drain was all worth it if it means all remnants of that evil alien are gone from my body! :)
It was weird, though. I felt like I should be celebrating, but as mentioned, I am so tired ALL the time, as is my poor mom who’s been temporarily living with me while I recover, there’s just no energy left. And there’s also the knowledge that recurrence could happen & that I have a long three months ahead of me. But I am grateful. Earlier today, I learned that a long-time co-worker of mine who worked at the same place I did for many years passed away on that same day I learned I was cancer free. She was only about 10-15 years older than me at most, and had chronic health issues of her own. So, news of her passing hit me surprisingly hard. I am just so thankful, though, that the universe has decided to give me more time.
Next on the agenda is to hopefully have all my stitches removed next week, though part of my incision site has been slower to heel due to the chemo & radiation therapies, but it seems to finally be coming along, as I just graduated from having daily home care to having homecare every second day, so crossing fingers all goes according to plan. They’re also going to give me a referral for physio next week, so hopefully that’ll help combat those silly sponges that seem to have taken up residence where the evil alien once lived in my leg! The at-home stretches have helped a bit but still have a long way to go!
But on that note, my drain site is really pissed off at me now, so I’m getting out of this chair, which by the way, is a lawn chair with lots of pillows! Another ingenious adaptation we’ve come up with in lieu of my killer computer chair, which would likely roll away on me while trying to get in or out of it! Wheels on walker = good, wheels on computer chair = very bad, LOL!!! :p
*[NOTE - The title of this post is loosely inspired by Placebo's song "Meds" from their album of the same name, released in 2006.]
