Well This Is Just Awesome
Description
Queer, foodie, feminist, engineering student, spends too much time on the internet.Links
My bloods are good to go and I’m ready to take on my last blast on the IV druuuugs.
In other news this coffee is the worst coffee I’ve tasted but at least I got it for free because someone else ordered an extra :)
Fancy Pants
So I’m finally starting my last round of chemo. EVAR (touch wood).
The Good News:
They ran out of beds on my normal ward so I’ve been bumped up to a fancy private ward that people usually have to pay money for. I’m enjoying things like double glazing, not being directly over the building works, nice food, large glasses of cranberry juice and an adjustable chair. (My old ward was also very nice and I miss the lovely nurses, I don’t know any of the ones here)
The Bad News:
Because of all the faffing around with beds I have only just started my chemo. This means that it’s going to be going until 3am. Ugh. It’s not being on the IV, that’s fine, it’s that the chemo will make me feel horrible until about 4am. No sleep for me, wooo. And then tomorrow and the next 5 days will be the same.
Also my tiny veins are giving me such issues. To get a canula in today, first I warmed my arm in a heating blanket, then the nurse ended up calling over the most experienced nurse in the IV team. Neither of them could find a decent vein so then I had to soak my arm in hot water for 10 minutes. They finally found one, but it’s right on my wrist which means I can barely bend my right wrist at all. Really annoying because things like feeding myself are suddenly tricky.
Apologies for griping, enjoy some fancy hospital food?
Back at the Marsden.
Made a very good start to the day by getting up at the crack of dawn (6am) and managing the 2 hour drive across London…navigating from memory. I think my Dad was very good in not letting his fear of me having horrible traffic incidents involving roundabouts show too much! I’ve been driving for over a year now and I still go round anything bigger than a mini-roundabout clenching the steering wheel like a woman possessed.
Got here VERY early, but it seems to be the best strategy. Nobody actually seems to care that you’re 2 hours early for your clinic because this frees up space for later and the people who haven’t bothered to get up at 6am :P News is all good, I’m obviously a little tired on account of having 5 days of chemo in the last week, but my bloods are juuust fine and nothing else weird seems to have happened to complicate things. Yay! :D
I’m really missing my PICC line already though. Veins in my arms are so wubbish, they’re just going to soak my hand in hot water and take blood out of that from now on. Anyway, I’ve done bloods and clinic and picked up a huge bag of meds from the pharmacy (white blood booster, blood thinner and enough paracetamol and ibuprofen for life :P), and now it’s just time to wait for my chemo to be made up. That’s one wee syringe of bleomycin, but it takes a couple of hours to make it up specially. In the meantime I’m gonna Tumbl and play me a bit of Portal 2!
So I’m back on the ward again. I was feeling pretty rough last night with my sore neck and all plugged into my 24 hour tape monitoring my heart.
Anyway, I woke up this morning at the crack of dawn to get myself once again down to the Royal Marsden for my weekly consultation. I was actually looking forward to it this time because I’d signed up for a Look Good, Feel Better workshop. More on that in a bit!
Anyway, had my bloods taken and my PICC line bandaged up all neatly to go home for a week…then I got told that my bloods were baaaad. Low haeomoglobin (8.5), low whites and reds (both less than 1). So, screw all plans for the next couple of days, I’m gonna be in hospital instead.
So, I got put in a bay, and after a chest x-ray, some hospital-tastic lunch, and various antibiotics, I was allowed to go to my Look Good, Feel Better workshop :)
THE WORKSHOP
Was friggin’ awesome. It was in the new Young People’s Unit which I haven’t seen yet because it can currently only take the littlest kids (and not hulking great big ones like me). My gosh it is shiny. It feels a bit like you are in a spacestation, except that the colour schemes are all HIGHLIGHTER COLOURS SHINY PATTERNS WOO.
If you haven’t heard of Look Good, Feel Better, and you know anyone with cancer who even vaguely likes make up, tell them to go to one of these workshops. They are a charity who provide makeover events for cancer patients worldwide. The sessions are run by volunteers and the contents of the Big Bag of Swag (more on that in a minute) are donated by dozens of different top quality cosmetics companies.
http://www.lookgoodfeelbetter.co.uk/site/index.cfm
So I arrived a bit early, and Gigs for Wigs (another awesome charity) was there. These guys go round holding events where you get to try a whole range of head coverings and ways of dealing with hair loss. Then you get to keep the ones you like best!! So I bagged myself 3 awesome scarves, plus some accessories to pretty them up and even a random pot of body butter. :)
Then the actual workshop got under way…there were about 8 of us there and because it was a young people’s workshop, we were all under 25. The littlest ones there were about 8 and you could tell all of this stuff for them was just totally awesome. As it was for all of us.
On to the Big Bag of Swag! Each one of us got a goodie bag with around 20 different items in it. Each had make up to suit her skin colour and type, so everyone had a slightly different combination of stuff. There were brands like Clinique, Max Factor, Bobbi Brown and Chanel! The collection is designed to work with a complete skincare and make up routine, which we spent most of the workshop learning how to do from start to finish. I had a lot of fun learning how to (somewhat cack handedly) do proper make up for most of the session, and in addition to that there were free donuts and drinks and all of us got our nails done. The guy leading the workshop was brilliant with the little kids and really made us feel like we were learning from a pro.
My mum looked pretty impressed by the transformation
Anyway, being totally spoiled for several hours really did take the edge off being put back in hospital for a few days. I’m doing okay now that I have had some blood (mmm, blood!), but my cough is pretty rubbish still, I have the whole “sore neck + lots of coughing = ow” issue, but never mind.
That was a whole lot of rambling, but I guess today has been quite the long and eventful day.
I’ve been a little absent lately.
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?
OHHAI. I’m too sexy for my nebuliser.
Today has been a mixed bag. I made it down to the Royal Marsden, but because I had a cough they had to make sure that chemo won’t be too much for me atm. Cue blood tests, chest x-rays, general fussing. Then they decided to go ahead but skip off one of the drugs in my cocktail because that one comes with lung damage side effects…
So then I got my PICC put in. This is a way to deliver IV therapy that lasts longer, it’s a tube fed up a vein from my upper arm to just above my heart. The hope is that I will be able to keep it in for as long as my chemo takes, and it’s possible to take blood samples out of it as well. I really need this cos my veins are tiny and well hidden, so even though I don’t really have needle issues I was starting to feel like a pin cushion from all the times people tried and failed to take blood/cannulate me! As though to prove this point, it took three goes to get the PICC in. I have some lovely holes in my arm to show for it!
So now I’m just chilling, hyper as Totodile on this nebuliser (these things raise your heartrate, I’m actually having issues typing this cos of the jitters but hey ho). Chemo proper, round 2, starts tomorrow. Bring it onnnn.
Daily Hair day 6.
Cos everyone loves hospitals!
My life for the next 3 months will be 1/3 of my time spent in hospital. The rest will be spent trying to reorganise the entire contents of my halls room which my mum packed into about 30 shopping bags and brought home to London. AWESOME NEWS THOUGH, round one of chemo is almost over and cancer is going away already!!!
I feel so awesome right now. Also knackered from all of the crossing London getting myself to hospital involves. But so awesome.
Guy just came round with the radio requests.
I asked for Weezer. Just turned on the radio now and found that this is an extremely classical music station. Not that I’m complaining but my music’s gonna be a bit out of place :P
Also saw the people from CLIC Sargent who gave us tonnes of help and advice earlier.
I was in the middle of tucking in to my dinner when the head nurse came flying in and was like “HOW MUCH HAVE YOU EATEN? STOP!” and then ran out again. Turned out a CT scan slot had appeared but I’d already eaten half a dinner by then so that was a total non-starter :P (you have to fast before CT scans). I’ll have it tomorrow instead.
Anyways, tomorrow I have the CT and also a lung function test. Then Thursday I start chemo proper. Woo.
Tales from the ward: Day 1
So last night we had an idea that we’d be in hospital today or tomorrow. We didn’t expect Royal Marsden to call us at 10am and be like “We got a bed for you, come down to us NAAOOOW”.
Cue mad panic.
The journalist for the local paper called in the middle of this and I pretty much gabbled at her “CANNAE TALK NOW THANKS K BYE”. Ooops. (Fortunately managed to catch up with her a bit later)
Then my dad got home and we decided I’d go with him on his motorbike. Even in situations like this, a motorbike commute on my dad’s bike is pretty awesome…buuut when I got off at the other end I regretted this slightly because I could hardy move for stiff bum :P
Anyway, things are good right now. I have a room, which is awesome (the nurse thought this was better than sticking me in a ward full of old ladies.), and I’ve just answered a bajillion and one questions for the nurse. Then I had to don my very sexy anti thrombosis socks, but also got me a massage on the NHS!
Not really sure how the rest of the day is going, looks like I gotta get a CT scan (ugh) and a lung function test before I start my chemo, right now we’re just chilling out and waiting to see a doctor. Course I’ll keep you all posted on what’s going on :)
Hospital time, RIGHT NOW, apparently.
Thanks Royal Marsden, it’s totally only a 2 and a half hour commute by public transport…
tenaciouskt replied to your post: Probably starting 5 days of chemo tomorrow.
Hey! I hope it all goes well and you feel okay. Are you at the marsden?
Indeed I am, had my first consultation today. Was interesting hanging out in waiting rooms full of older patients for hours with my mohawk and stuff :P I’m okay, just bloody knackered cos getting there and back involves pretty much the entire northern line, a train and a bus at either end, but I feel it’s worth it for the total pros who are gonna be treating me :)
Updates
Yesterday got a call from City Hospital in Nottingham telling me that I have ovarian cancer after all, not lymphoma as suspected. Gettin’ myself down to the Royal Marsden on Monday.
Mohawks for cancer is going better than I could have dreamed. Over £500 raised so far. Today I went out and got some exciting hair products
Colour is gonna be teal (the ovarian cancer awareness colour), with either blue or purple, decided by money bucket voting.
The local press are gonna cover it, which is well exciting!
I’m beginning to feel the strain healthwise. I feel tired so easily, and also I have gone off my food completely. In the sense that I used to inhale too much food (hence the slight chubs), now I stuggle to finish a single normal portion. If I eat anything really I get indigestion (for the same reason that pregant women get it, cos of the lump and stuff), and some foods like really sweet things totally overwhelm me. While this equals weightloss at the moment, it is NOT a good thing. It is a shitty shitty thing. It’s scary. For the first time in my life my mum is having to coerce me into eating calorific foods to keep up my weight and strength.
