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Monday, 27 June 2016

Week 5 of Chemo

Hi again.

This week is from Saturday 18th until Friday 24th June.

During the weekend I felt kinda normal, or at least as normal as I could with no hair and constant meds.

As it was the first week of my 2nd cycle of chemotherapy, I had to go in every day again. It sucks. I went in on Monday feeling really constipated with cramps, and found out the morphine was actually a likely cause of the pain (I have been off it since). Anyway, on Monday I was supposed to have vincristine, a drug, but it causes really heavy constipation, so I didn't have it. Same thing happened on Tuesday.

My mouth has been getting gradually worse, and on Wednesday the doctors thought it more than likely that I was going to have that fungal infection, same as last time. It makes everything except extra-strong mints and spaghetti bolognaise taste like cardboard. Actually, come to thing of it, burgers and bacon still taste good too :) . So on Wednesday they prescribed me EVERY kind of drug to kill the infection properly: fluconazole, gellclair, this special medication mouthwash, nystan, omeprazole, etc. They even took my braces out, which was pretty much the only good thing that's happened to me in months.

And guess what? Out of all those meds, they all taste gross, and none of them work! Argh!

My friend's dad came over to deliver about 10 books from the school library for me, which was really nice, but when I read them, there was a definite theme -almost all of them had at least 1 cancer patient in, and one had people dying of cancer left right and center. Encouraging.

At the hospital school, some of my teachers from normal school have been sending me work. It is so boring, especially as I had already done half of it in school. On week one of last cycle, I wrote this poem for a competition between a few hospitals, and it turned out that I won. Yay. I got a £10 Amazon voucher.

Thursday 23rd was my little brother's birthday. He invited about 5 friends and my Aunt over for go-karting, at this place with a 3 story track, but I was so bored as I had to watch. I'm not allowed to do it with a line in. It reeked of petrol and cheap pizza, and there was no WiFi (!) but it was fun for him. We had pizza back home, and one of his friends gave me a £10 book voucher and some scented shower gels, which was kind (and creepy, considering that particular friend has always appeared to hate me). Though I suppose I used to be friends with his older sister...

My brother got a new phone, same as mine but in black not gold, to replace the one he just lost. I thought that was really unfair, as when mine got stolen I had to wait 4 months with a £10 phone which sucked before getting a more expensive but even worse one for two years, and he got an amazing one after a week. Also, my new one doesn't work properly yet and I've had it almost a month now, but his worked after 3 days :( .

Sorry, I don't mean to sound so jealous and needy. I get it, there isn't much point spending loads on someone who could just die any second. But, to be honest, it does bother me. I try not to let it, but it does. Never mind. Just ignore me.

On Friday, I had a tiny sliver of his cake. That was all I ever got of it. Sorry, sorry. I'll quit with the whining.

My parents got me a new topper for my mattress. Its memory foam, and really comfy, but it still takes hours for me to sleep, and then I wake up loads in the middle of the night, and then I wake up at 4am wanting breakfast. Urgh. It is very comfy, but night time is so BORING.

So, on that cheerful note, see ya,

Mitti x

PS. My parents have actually been amazing to me, pretty much waiting on me hand and foot, making meals for me in the middle of the night, so ignore all that phone talk rubbish. My parents have been amazing.

Week 4 of Chemo

Hi again,

Wow, I really am behind with my posts! Never mind. This week (beginning on Saturday 11th June) was generally OK, so yeah...

I didn't have any chemo at all (not even steroids, for the first time since treatment began!). On Saturday I finally managed to eat something, though it really hurt. I ate a whole roast chicken on my own I was so hungry. Unfortunately, after not eating for so long, my tummy kinda rejected the food, and I puked it back up. It still tasted good though :) . On Saturday, my street of 11 houses (we are all quite close and friendly with each other, bar the new household at number 3, who don't really know anyone much) decided to have a street party for the Queen's 90th birthday. It had been planned weeks before I was diagnosed, and although I was asked, I didn't want to cancel it. Me, my brother and my next-door neighbor baked and decorated 3 cakes -a devils chocolate cake -for the kids- a Victoria sponge -for the adults- and a tray bake with a union jack flag on top made out of raspberries, blueberries and buttercream -for the more traditional adults.

I only stayed for about 10 minutes as I wasn't feeling 100%, so for the rest of it I was curled up on the sofa with a duvet watching this Australian border controls program and this cake shop program. My mum insisted I had some pink lemonade so I didn't get dehydrated again, but drinking anything hurt my chest so I couldn't breathe. My dad came in for a while, armed with two large slices of the devils cake, both of which I ate. It was fun a lazy kind of way, and we did a couple of suduko and had a crossyroads competition, which I won.

All the other days this week were pretty inconsequential, although at one point a little ambulance car had to come over because I was finding it hard to breathe, but I was fine after half an hour. My dad got me a pulse oximeter and a blood pressure cuff so I could feel 'reassured' about my breathing. When the community nurse came over she had to tell us what the readings actually meant as we didn't have a clue, and honestly, we still don't.

Not much else happened, really. I tried to keep my mind going with more suduko, but after a while they got too repetitive. I couldn't find any good new apps on the app store either. The days just seemed to draw into each other, and night time is the worst. My back ached, and my head and my ribs and most of all my stomach hurt. My dad kept giving me more and more morphine, as much as I was allowed, but I hate the bitter taste, and how drowsy it makes me, and it seemed to make the pain in my stomach worse and worse. I tried to stop it one day. I had none, not a single ml. But that made everything worse, as I got withdrawal symptoms which hurt so, so badly. Constipation and diarrhoea, too.

And that was the end of my first cycle! Which means that I'm now a quarter of the way through my chemotherapy already! Woop woop!

Bye for now,

Mitt xox

Sunday, 19 June 2016

Week 3 of Chemo

Hey there!

Sorry I haven't posted anything for  while, but I've had some really bad days recently.

So this week (starting on Monday 6th June) was supposed to be pretty chilled out, with one lot of chemo on Monday, and then a hassle (and steroid!) free week. Let me tell you, it was not.

Monday was fine, kinda boring, to be perfectly honest. I went into hospital, had my chemo, waited around a bit, had an x-ray, waited around a bit more, had an ECHO scan, went home. An ECHO scan is no where near as cool as it sounds -its an ultra sound, like a pregnant woman has, and you basically just lie down for 40 minutes having jelly on your tummy while a lady looks at your heart on a screen. My heart is creepy. And you don't even get to eat the jelly because its not edible! Noooooo :'( .

Oh wait! Sorry, I nearly forgot! On Monday on the way home, I got my wig. Chemo has an annoying tendency to make your hair fall out, so there is this neat little charity called The Little Princess Trust which provides wigs for caner patients. The great thing about wigs is you can have them cut and curled and straightened and dyed to how you want them -before, my hair was all short and blonde/brown (until I dyed it red) and it wasn't very nice. My wig, on the other hand, is long, down to my waste, blonde with golden highlights, and wavy. It really is just like a princess's hair!

Tuesday was amazing. Like seriously incredible. I actually felt really good and normal for the first time in ages! I wanted to go in to school for the whole day, I felt so great, but exams were every lesson except last lesson, so I stayed at home for most of the day, and just went in for history, which was being taught by this Russian substitute I've never met. She was OK, but we learnt more Russian Language than we did History. And the only Russian we learnt was 'da'. 

And then came Wednesday. Ah. I woke up in the middle of the night feeling a bit ill, so I went to the loo thinking that would resolve it. As I washed my hands, my ears started ringing and my sight began to go, so I rushed into my parents' bedroom and fell onto the bed. I felt really bad. In the morning I felt awful. My mouth hurt so much I couldn't even open it. I went to the loo again but I fainted while washing my hands. I was only out for a few seconds, but it felt like hours. Mum and Dad went nuts, calling the hospital and the ambulance and trying not to have panic attacks. It would actually have been quite funny if it wasn't so serious.

The ambulance people came (and had to prick me with a needle... ow!) and they took me to the hospital. Once I could open my mouth, I was told to drink lots and also to have sugary things, but I still couldn't eat anything because my mouth hurt so much. I lived on Pepsi :) .

I was also put on a drip, an infusion of other medicines and lots of morphine. I had to stay in hospital, unable to eat, for a few days, and when I had a shower on Thursday almost all of my hair fell out, which was a shock when I looked in the mirror. There was just this gross patch of red hair at the back, and it did not look good.

On Friday, my school was having a picnic on the field to celebrate the Queen's 90th birthday, and I was desperate to go. As the doctors had wanted to discharge me the previous day, I thought 'It won't be a problem' but it sure was. I asked the staff nurse and she said probably but I would have to ask the doctor. The doctor said no and I was really annoyed because it would never happen again and none of her reasons were valid. At all. My dad pulled a few strings and got the doctor to ask her boss, who said there was no reason why not,  so I got to go! Annoying thing is, I got the times muddled, and I arrived with only 20 minutes to go, and I had to call at home first to get my wig. There was a BBQ and people were sharing around cupcakes and there was bunting, and it was just generally a really nice atmosphere. I was sitting with a couple of friends and some of their friends who I don't really know but went to their primary schools. However, by the end I was feeling a bit faint and dizzy so it was probably a good thing that I hadn't been there any longer, after all. I went home and was better by dinner, so it was all good.

So yeah, that week kinda sucked. Oh well, hopefully that was the worst of it.

See ya soon,

Mitt xox

Saturday, 4 June 2016

Week 2 of Chemo

Hi again.

There isn't a lot for week 2, as I only had to go into hospital for 1 day, so I'm just going to pick up where I left off (or should I say PICC up). Hahahaha. Yeah, I'm not very funny. Oh well.

Saturday and Sunday were fine. Actually, Sunday was amazing. I just, ironically, felt so healthy and alive. I didn't have to go back into hospital until Tuesday, because Monday was bank-holiday. I felt quite ill on Monday night, but I think I was just worried my new PICC would be broken. It wasn't though, so that was good.

On  Tuesday we just drove up to the hospital and then stayed for about 10 mins and then left. Easy.

But wow, Tuesday was so weird! In my family I am always the one who gets the small portions of food, because I have a tiny appetite. However, the steroids make you SUPER hungry, and instead of the 3 small meals I usually have, on Tuesday I had 10 large ones!!!

I had pasta first, then a large McDonald's meal, then soup, then pitta bread, then noodles, then loads of other stuff I can't even remember. That was weird. And I was still hungry!

Wednesday was normal again.

Thursday was super scary though. I was just watching my brother and his friend play Super Mario, being completely calm, when I start finding it really hard to breathe. This was expected though, because my cancer lump is close to my heart and respiratory system. But it kept getting worse, and I had a panic attack. My face went really hot and red, but the rest of me went cold, then I went dizzy and I couldn't see any more, and then I started shaking really badly and I just couldn't breathe and it was so scary.

We were on the way to the hospital but came back home because it stopped. I was so glad, partially because it was all over, and partially because Mum was making her special Chicken Tikka Masala for dinner, which I love and hadn't had in ages. What? The steroids really do make you hungry...

Friday was awful. I was so constipated I spent most of the day sitting on the loo. If you have any good tips to help with constipation, please comment, because it is one of the most painful side effects of chemo. Also on Friday, my tongue started to swell up and go all grey. It hurt.

Bye for another week, now we are pretty much caught up (Friday was yesterday).

Mitt xox

Week 1 of Chemo

Hey again,

Last time I ended just before starting chemotherapy treatment, so naturally I'm going to start 5 weeks in.

LOL.

Nope, I'm only 3 weeks in at the moment, so I'm going to start on the first week.

I went in on the first Monday only to find that the PICC line they had put in had already stopped working. Argh! Stupid PICC line. I had another cannula put into my hand for the night so that the faulty line wouldn't delay my treatment, but it was a right pain to wash my hands, go to the loo and pretty much everything else, too, as it was my right hand.

I was really nervous about having my PICC line taken out, but it was nothing, so don't worry if you every have to have one out.

That same day, I had the most drugs put into me than I ever will have again until another month's time. I had every single kind of chemo drug I will (hopefully) ever have, other than one which I'm only supposed to have on weekends. I had a particularly nasty one that day, called doxarubicine (I don't know how to spell it sorry), which makes your wee go bright red and scared the hell out of me when I first went to the loo. I hate it the most because a) its the one that makes you feel really sick and b) its bright red, and just looks so unnatural when its being put into you. At least with the clear drugs you can ignore them!

Also, that day I started having the steroids. They. Taste. Gross. Like, seriously, couldn't they at least put a sweetener in? I have to have 4 small steroid tablets at lunch, 4 at dinner, and 1 small and 1 HUGE at breakfast every day. Yuck.

I thought the Monday would be the worst, as it was the first day and the one with the most drugs, but boy, was I wrong.

Tuesday was one of the worst days of my life so far. I knew that I was having another line put in, but had presumed it would just be another PICC, which just goes into your arm and is basically a big cannula. However the doctors forgot to mention that if they couldn't, for whatever reason, put the PICC in, they were going to put in a Hickman! I DO NOT WANT A HICKMAN. They go from your groin all the way up into your heart, with the risk of collapsing a lung. No thanks.

They had to let me talk to other patients with Hickman lines in before I would agree to go ahead with it, and even then I REALLY didn't want one. They put me to sleep with another general anesthetic and when I woke up I was so relieved to find out I didn't have a Hickman. So relieved.

I had only 1 drug (except for anti-sickness and steroids, which are tablets I have to have every day) and that drug was fine, it just takes a whole 2 hours, which kind of sucks.

Wednesday was fine, really, with just that 1 drug and a whole load of sausage rolls. I love sausage rolls. Thursday started off fine, but I felt so ridiculously sick in the afternoon, it was awful. Same went for Friday, but Thursday was definitely worse.

I met this guy on Friday who was having chemo for the second time. He had had leukemia before, but it had just come back again. His new chemo will last 3 years and 5 months, poor guy I feel really sorry for his family, because his sister had cancer too.

I stayed home at the weekend, so yeah, that was my first week of chemotherapy.

Bye,

Mitt xox

Wednesday, 1 June 2016

Pre-Diagnosis

So, hi again.

I haven't posted anything in at least a year, so sorry if I bore you.

A lot of pretty intense stuff has happened to me in the past few weeks. Where to start ..?

I've had a really, really bad cough for the last few months, and I was puking and having nose bleeds a lot, and when I went to my hairdressers she said that I had a bald patch (!). I went to the GPs and got given some gross banana medicine and some even worse steroid tablets. I also had an x-ray and a few blood tests.

The blood tests came back fine, though my arm hurt a bit from the needle (it didn't help that the guy doing it admitted he was scared of needles too!). However, the x-ray showed that here was something small behind my sternum (a bone in my chest) that shouldn't be there, but I was chilled as they said it was probably just a bruise.

That was maybe two months ago.

I went in on Monday for a CT scan just to check it was all OK, but on Tuesday I was called back into hospital because there was a possibility I had Thymoma Cancer. That was when everything started to go wrong.

I stayed at my emergency hospital until around midnight, when the emergency ambulance came to take me to a better one. I had the blue flashing lights and sirens on, even though it was so late, and I was just laughing inside at all the people who must have been woken up by it.

I had to stay in hospital overnight for ages. On Wednesday my friend came to visit me, even though the hospital is a hour away. On Thursday I was given a general anesthetic to put me to sleep while they put a PICC line (a straw going up my vein) and a biopsy (which is when they take out part of the lump to grow it and see what is turns into for my diagnosis).

Life hint: avoid biopsies. They HURT.

I was given a strong painkiller and some morphine (which works but makes you constipated). 

Anyway on Friday I was discharged for the weekend (yay!) and on the way home I visited my friend's house because it was her birthday. She was so excited to see me, it was like I was a famous celebrity or something!

I went to her bowling party on Saturday which was hilarious because I beat her bowling with the wrong hand and I suck at bowling. Like, seriously, that was the first time I've ever won bowling before. 

I went to school for a week, and got given about 50 sets of colouring books and pencils, which was funny, but I really appreciate it, especially as I have barely spoken 5 words to some of the people who gave them to me before. 

Then I had to go back for a PET scan and another CT scan which involved being radioactive in the nuclear medicine department and then lying down for 30 mins being completely still, which made my hands numb. 

Me and my parents had a meeting with my Head of Year at school, and I was given permission to dye my hair red by the Head Teacher, seeing as my hair is probably going to fall out, with no guarantees of ever coming back.

I went back to hospital on Monday a week later, because the doctors said that it definitely was NOT a bruise, or Thymoma, it was Hodgekins Lymphoma Cancer. Stage 2 A. I started chemotherapy treatment that Monday. 

So yeah, that was pretty intense. I just got so scared the week in hospital. Not because of my diagnosis -for some reason I always thought I would get cancer- but just because I didn't feel like me, if you know what I mean. I just didn't feel right

Also, despite my much larger problems, I was just really annoyed that my hair would probably fall out. Isn't it enough that cancer has to take away my health, but my dignity too!!!

Just to clarify, I am NOT one of those girls who is obsessed with her looks -far from it!- but I just hate the idea of being bald, like everyone can see my weaknesses. 

Bye for now,

Mitt xox