She’s just been diagnosed with ovarian germ cell tumour.
She’s currently coping like a boss but it would be lovely if anyone who has been there, done that and got the chemo could say hi to her. :)
Below the cut is an image of two of the tumours removed from my abdomen.
Yesterday I getting to my chair with a Zimmer frame was an achievement, the day before I started coughing in my chair, panicked and hyperventilated and ended up having to check I didn’t have a blood clot in my lung or something. Recovery is amazing. Still feels like my poor tum is stretched to breaking point, hope that changes when the stiches come out 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.
I’m about to go to sleep. Waiting for a “I am on fire” intensity hot flush to stop. Ick. Today’s been pretty standard. I’m defintely going to lose my PICC at the end of this round (CREYS) (but at least they gotta decoagulate me first, buys me this time). At least the rest of my counts are good to go.
I’ve now been prescribed 30 days of what is essentially rat poison (or at least very closely related to Warfarin), and some white blood boosters to preempt my counts going for a dive.
I’m on a ward with nice people who like a chat. My chemo started later which is why I’m still up at this unearthly hour. Just got on to post hydration like a minute ago.
I also found out that one of my closest friends, who I was out of a walk with yesterday, probably has EXACTLY what I have, guy equivalent. He’s in hospital too now. I’m a bit in shock. It’s a bit less unusual in guys. And fortunately they caught it so early that they might just give him surgery (TOMORROW) and that’s it. I have all my fingers and toes crossed for him, I don’t want to see him go through the same thing as me.
Blegh. It was very hard to get up this morning. My throat and chest feel pretty bruised from a lot of coughing and I’m starting to get the aches from the chemo doing it’s work. I also checked my weight and that’s starting to drop as well. Gotta get into a thing of drinking tonnes of water because I suspect that helps with feeling less poison-y.
On my second last day in the hospital there was a woman on trials in the bed next to me. She didn’t know what her primary cancer was any more. She was a methodist minister, but originally a computer scientist. I don’t know if it was the religion or just being a certain type of person but she was so incredibly positive. It was quite inspirational. She told me to do the water thing, and also advised me to eat liver and drink a bottle of Guinness every night to keep my counts up.
Tumblr addiction really starting to show if that’s what I call being gone a couple days :P
Anyway, I got let out of hospital a little late which was tough, got home and CRASHED OUT yesterday. Didn’t want to move or think or internets or anything.
Today got up at 6am to get my arse all the way back into hospital for my consultation, and now (huzzah!) I am entirely hospital free for the next week.
They decided to skip the chemo I was due today. I’ve had this cough for over a week now and they want to be able to make sure my chest is okay before giving me this bleomycin stuff that has been known to cause scarring in the lungs. Lovely, I know right? Instead I had to remind them to give me my sleepy ovaries injection which I’m supposed to get every month.
Hot flushes at age 19. Uuuh, not cool :P
They also want to put me on a 24 hour tape for my heart sometime this week (so I guess there will have to be a little hospital still…), but hopefully that can be done locally and not 5-hour-round-trip-trek-to-the-Marsden-style.
I also owe you more daily hair.
Daily Hair day 12 part 1
I say part 1 cos my hair is falling out everywhere and it’s starting to get mighty annoying. Tonight I might just go for the bald look and have done with it?