I don’t wanna do my homework!!! I just wanna take a nap. I have no idea why I thought doing college and chemo at the same time would be a good idea.
Oh god I’ve got to do uni work while on chemo this year. If the summer was any indication, this is going to be… interesting.
I can’t get over how ridiculously hardcore you are.
“Post-chemotherapy cognitive impairment describes the cognitive impairment that can result from chemotherapy treatment.” Causes: “changes in memory, fluency, and other cognitive abilities that impede the ability to function.” “These effects can impair a chemotherapy patient’s ability to understand and make decisions regarding treatment, perform in school or employment and can reduce quality of life. Survivors often report difficulty multitasking, comprehending what they’ve just read, following the thread of a conversation, and retrieving words”
I’ve definitely noticed difficulty retrieving words.
I do worry I might be getting this to some extent. I very probably failed a maths test today because I wasn’t keeping track of the questions. To be honest, I used to be pretty ditzy to start off with but now I’m constantly losing track of conversations and things. :/
Apparently, had I not had health insurance my total costs this year would have been $116,547.81.
The orchiectomy was almost $9,000. My second surgery, the RPLND, ran almost $30,000.
Chemotherapy ran upwards of $3,000 a day, and each CT scan ran as much as $6,000 (and I had like 5 of those this year). Throw in all the doctor visits and medications…and yeah. Crazy.
What’s even crazier is that Humana gets $72,114.32 worth of discounts, meaning they paid a total of $41,281.89.
I’m super lucky I was still living at home when I got cancer and under my mothers insurance plan…If I hadn’t been, I would be completely screwed financially right now.
Cancer is fucking expensive.
(this is really kinda interesting because your treatment was pretty much the same as mine)
HOLY SHIT. Also, God bless the NHS.
My left arm hurts. I discussed it with the Maestro yesterday - I have a new cord (look up “fascial cording” if you need a further explanation) and it runs all the way down to my damn wrist. But my hand is numb, my arm aches and it’s a bit swollen. So I am being scheduled to go in for more PT and lymphatic massage -and, I am assuming, to assess if I may have lymphedema (which is basically swelling caused by the removal of lymph nodes - it can be horrifically painful if you don’t catch it early - and if I have it I will need to wear a lovely *NOT* compression sleeve in order to get it under control).
But - of course - I am convinced it’s cancer. Because after you have been diagnosed with cancer and done a shitload of treatment (which I am still doing) - you automatically assume that any ache, pain, spasm, twitch, or glitch is cancer. I had a great talk with one of my doctors about all of this yesterday. And she assured me this kind of thinking is not abnormal for cancer patients and survivors. Cancer is a traumatic life event and dealing with the aftermath of it can be as painful as dealing with the disease itself. Sometimes moreso.
There is no guidebook on how to move on after cancer or any other debilitating disease. No rules. No cut sheet with a list of “to do’s”. There is advice - sure. But often that advice is coming from someone who hasn’t even ever had cancer. And as a young person dealing with this kind of diagnosis, I have (hopefully) many years of fear and worry ahead of me.
But I hope there are days ahead of me when I don’t jump to the absolute worst conclusion when something hurts. Because - let’s face it - as we get older, shit starts to hurt. But right now, everything is cancer. And it’s awful. Just absolutely awful.
This. Just this. I spent a LOT of my time in Norway freaking out because I thought I could feel lumps under my ribs and in my abdomen. I actually considered, and had a long talk over dinner with my family, getting on a plane and flying home just to get a scan and put my mind at rest.
Even now I’m in all clear territory, my throat hurts and the back of my mind goes “maybe it’s that lymph node in your neck” or my abdomen is stiff, and I think something has gone wrong with the scar. And when I’m tired when I come home in the evening I wonder if I have good enough reason to be tired or maybe the fatigue is creeping back in.
On the topic of compression gear, I’m in a compression sock for 6 months, wooo. Fortunately it’s the winter months, but wearing a very tight stocking that takes 5 minutes and lots of struggling to put on ain’t great. But at least I got purple ones! Usually only for private patients but I asked nicely. Was given an amusing leaflet with pictures like these to illustrate the fabulous range of colours on offer :P
My theory is that chemo pickled my immune system or something.
I’m sitting in a chair with most of my wires now unplugged. I really did feel like a christmas tree in ICU, I was hooked up to pulse monitors on my chest and feet, 4 lines in my right arm and hand, a central line in my neck, arm cuff for my blood pressure, gastro nasal tube for reducing my stomach acid so I was less likely to vomit, oxygen mask, catheter, 2 drains and an epidural in my back. I was getting some kinda opiate painkiller, for a bit I got my very own drugs button to administer that which I shouldn’t have found funny but did anyway. Also a lot of fluids and antibiotics after it turned out I had a bit of a chest infection. And I was under a “bearhugger” which is a kind of blanket that blows warm air at you to keep you warm because I was violently shivering when I came round. Now all I have is the central line in my neck (didn’t realise it was a 5 way port thing sticking out of my neck and actually sewn to it until yesterday!) and my catheter, which is annoying and uncomfortable. Also not cool going for walks with a giant bag of your own pee dangling off your zimmer frame!
Actually going under was a bit of a non-experience. I was freaking out about the epidural, so they gave me some liquid Valium to calm me, then got the epidural in (unpleasant) then gave me some other stuff at which point I started seeing two of everything and I don’t remember the exact point at which I passed out. Next thing I knew, I was dimly aware of being extremely sore and someone calling my name to wake me.
The scar is a big ‘un. Goes down as far as possible really and up almost to my ribs. Difficult for the first few days because it feels stretched and distended to a very uncomfortable extent. Also the obvious pain of having a large amount of tummy opened up and then stitched back together again. The good news is I got sutures rather than staples so it’ll look comparatively neat when it heals. No problem with infection or anything so far.
Even on the first day I had physio telling me I had to get out of bed and get into a chair. That was pretty agonizing, but I managed it after about half an hour. Amazing the things you realise you take for granted when you lose it. I’m only just getting to the point where I can move myself around in bed to get comfortable, and I’m still stuck sleeping on my back. Today I even went on a little walk with a zimmer frame and tomorrow I reckon I could go without. Everyone finds it hilarious that I have a zimmer frame…
Finally eating again! The last proper meal I had was pizza at my friend’s house on Tuesday (we had a pizza and Mario Kart party, hell yeah!). If you know me, you know I don’t pass up food too easily. Because the surgery involved surgeons sticking their great cloth mitts in my gut, it freaked out (this is pretty usual) and wasn’t taking anything apart from water for a few days. Even too much water made me throw up. But a couple days ago I had a ribena and some chicken broth, yesterday a Fortisip milkshake (served in a Martini glass, lol!), today I had some porridge and a bread roll and some dried fruit, so things are definitely looking up! Really hungry but still only managing tiny portions, I’ve visibly lost weight over the past few days. Although my tummy still resembles a balloon because it’s all swollen up, and will be for a couple weeks.
I also gotta wear compression socks for the next few months to prevent my leg swelling cos I’ve lost lymph nodes. I got way too excited at the idea that they came in a range of colours. Purple socks for me! The bad news is that someone let slip that I’ll probably have to do more chemo. Not as much as last time but a couple of rounds. Made me tear up a bit because I was so happy when I thought I’d never have to have that poison again, but I’m okay, just gonna change my goals for the next few months and stay positive.
Spending most of my time sleeping and chatting with guests, I’ve had lots of lovely people come in to visit :) Today’s been the first day I’ve managed a prolonged computer session, was just too tired before! Been on Pottermore of course, my welcome email arrived right on time so that’s been awesome. I’ll keep posting if anything else happens, but it looks like I might only be here a couple more days with the speed I’m recovering!
For those interested, I’ve taken a picture of the scar and drain wounds under dressings.