Chemo No More

I sit here, in my bed on the 23rd August 2011 and I can officially say I am no longer a chemotherapy patient. Yesterday, I indulged into my last ever chemo infusion for 5 hours, and when that beep went off with the pump reading 'INFUSION COMPLETE' it was, honestly, one of the happiest moments in my so far life. (I grabbed my iPod to snap a picture, but just as I was about to do so, my nurse came and turned the pump off- bit of a let down)

Things at the moment are good. I had my first meeting at the Western yesterday to discuss my radiotherapy, which is now only two weeks instead of three, and will start in two weeks, so overall finishing three weeks before expected. Which means, I have the entire October holidays to celebrate! The staff were lovely, seemed pretty reassuring until they got me to sign all the consent forms, agree to everything, read the terms and conditions and all the 'we cannot guarantee this will work' 'there is a small chance it will create a second cancer' malarky and then, after this, spring on me that it's most likely necessary to get 4 tattoos. (just small ones to line up the lasers..but 4 tattoos..for the sake of 11 hospital visits. crikey.)

Post-Radio Plans:
To give me something to look forward to, I've decided on a few things I'm going to do to celebrate right after my radiotherapy.

1) Get the double piercings I've waited for. -Due to having constant scans/surgeries and with the 'no metal' rule, I've not been able to get my double piercings as I'd have to take them out every so often, so it just hasn't worked. So I plan on getting my doubles done and most likely cartilage. (only like a year after I anticipated.)

2) Get Jack to buy me a Nandos. He's been going on forever about 'when is your finish date' 'when is everything over' so we can grab a celebratory Nandos, and now that I have an official date- September 26th, Creaders, you are very welcome to buy me the Nandos you promised me.

3) Go on a massive shopping spree. Because of the steroid weight, I've lived the past 4 months in baggy, disgusting clothes and I've refused to go shopping because it's just upsetting. So once all the steroid weight vanishes, I will treat myself to a new wardrobe, using the Bank of Mum and Dad obviously, c'maan I deserve it.

4) Have dinner and cocktails with my girls. ..yes, this is just an excuse to dress up and get my favourite girls together.

5) Eventually have a big 'I NO LONGER HAVE CANCER' party.

my two fave pens. mature fifth year, huh?

School also starts back tomorrow, which I am majorly excited for. I did the last of my school book shopping today so I am now all set with all new stationary, books, bags, uniform etc. Although I am requesting a day off on Friday because I have scans..normality? Not for me.

My mummy and I went school snack shopping today to Tesco, and the effort of wearing my hair to a small outing like this has never been necessary. As we got to the checkout, the checkout girl says to me "I love your short hair. I've always wanted hair like that but never been brave enough. ..also with winter coming up it may be quite cold. But you really suit it!" I. Was. Over. The. Moon. Thank you, kind checkout girl. Even if she was mocking me, as my brother seems to believe, my confidence has boosted. Although not quite enough to go commando back to school..

No Miracles Here

So I've started cycle six; my last cycle of chemotherapy which seems like a miracle. Like Jesus feeding so many people with so few fish, like Moses parting the Red Sea, like me getting an A in my maths exam..
ANYWAY, I currently have two more infusions, but like 10 more days of steroids. (I've so far had 2 infusions on this cycle, but managed to use 5 cannulas and like 7 litres of hydration as the chemo is beyond painful going into such a small vein)
So this is like the end of an era, like when the credits roll on Harry Potter and the Deathly Hallows Part II, when Take That announced they're splitting up, the carnage and rioting that caused..it's quite sad really (okay, well not really. genuinely haven't been this excited in a long time. but you catch my drift..or maybe not)
ANYWAY (again). With my chemo coming to an end, we need to look into the future, so I have my meeting at the Radiotherapy centre on Tuesday. There, I'll be told what's going to happen and what I'm to expect, to be honest, not sure if I want to know..


I then plan on returning to the place I like to call school on Wednesday to crack on with 4 highers (I was told to only do 3, but since I got an A in maths y'know..) and I plan to go back full time. Seeing as I haven't been in school longer than three hours since February..I think I'm underestimating how difficult I'll find it. Although, on the bright side, I have free periods as the majority of my year take 5 highers, so one of the beds in matron has my name on it for 5 hours a week. I'm weirdly excited, but the novelty of it will wear off after the first couple of days and I'll just be longing for summer again. However, I'm excited to use my new stationary, the majority of which is from the Disney store. Classic Lgibz.

The biggest piece of advice I've been given about finishing treatment, is have things to look forward to. So I'm already organising my summer holidays for next year where I plan on going to T in the Park, Portugal, France, Majorca, London, hopefully Gibraltar and Ibiza. I also have my wish to decide for The Make a Wish Foundation, co-hosting the It's Good2Give fashion show along with Grant Stott and a fellow patient and of course, my general end of treatment celebrations.


Last Tuesday, Lynne had organised for myself and seven other people to go to a silver ring making workshop where we got the chance to make a silver ring with a scottish stone. The lovely Ian who runs the Precious Metals workshop guided us through step-by-step. With each of us being complete amateurs (unless you count making pasta jewellery as experience) parts became stressful and proved to be more difficult that Ian made it look.  Of course, the fact that we started at 10am meant mine, if not everyone else’s brains weren’t quite fully functioning. We worked solidly from 10am to 6pm with an hour lunch break in the middle, and I think it's very safe to say we were all proud of the outcome. Of course, my mum’s was not quite as good as mine, in fact, no ones was (kidding, obv, that's just mean)

The Light at the End of the Tunnel

So with only one cycle of chemotherapy to go, the end is drawing near and the light at the end of the tunnel seems to be getting brighter, but still flickering on and off. I only have four more infusions left; two of which are only half an hour, but two of which are six hours and fifteen days of steroids. So, in hope that everything goes to plan, this time next month i will be chemo-free and hopefully returning to a normal face/body shape. In saying that, I then have three weeks of nothing before three weeks of the dreaded radiotherapy which I've only heard bad things about. I aim to be done by mid-October. So when I think 'YUUS ONLY ONE MORE CYCLE. I'M NEARLY FREEE' ..i forget that, really, i still have two and a half months..but that's nothing, i still gots me my whole life ahead.

Of course my summer hasn't exactly panned out how i'd imagined, the past five months all sort of merge in together with no school, treatment, being home, mainly being alone, but I shouldn't complain because my life will be back to normal in no time. But it's really made me realise that time is a funny thing. In ways, it feels like a zillion years ago that i was at the doctors every other day, undiagnosed, being hated on by my GP because he was clueless as to why my feet were itchy. Then that first day of scans and my first day at sick kids after being told I have 'Lymphoma' which was a word I had never heard and had to write down to remember. And in other ways, it's zoomed by. Being told I'd have to endure six months of very solid treatment, imagining that I would not see nor speak to anyone for the entire time, being violently sick and weak- it felt like it would last forever. And here I am, with one cycle to go, having had as normal a life as I possibly could have for the past five months, with the end in sight. 

I was in hospital for a blood test yesterday- just to check all was okay after the cycle, and one of my nurses introduced me to a newly diagnosed girl who was the same age as me, but with a different cancer and different treatment regime. She was lovely, although you could tell she was worried and had no idea what was going to happen to her, so I played it cool and told her it's not as bad as she thinks. Although she stared at my head for the entire time, obviously like 'HELL NO I DON'T WANNA LOSE MY HAIR AND LOOK LIKE A LESBIAN' but unfortunately, it's inevitable for us cancer gals. I can remember being first admitted, I was never introduced to any other patients so I never had the reassurance I hope I gave this girl, I just sort of had to find out things for myself and talk to the nurses, who obviously aren't as helpful as patients as they just witness what happens, and don't know whats it's really like to lose your hair, have your face and body blow up like a balloon in the space of a week and develop scars all over your body which are mistaken for tattoos. (yes, James Lennon, this is aimed at you) But in case some of you haven't gathered, MY HAIR IS COMING BACK, and i'm rocking the very lesbian-esque/boy look-which really, really doesn't work on me, but I'm hoping to have a reasonable lid my christmas, and of course I shall keep you all updated in that department. My arms and legs are back to normal, so I've snapped out of being in denial and I've had to shave them. Obviously, I lack normality in my life, but that part could've stayed away.

 i love james armour as well <3

Po(r)t Luck

I guess in some ways, I could say I'm an extremely lucky girl. And in others extremely unlucky. Lucky, because; they caught my disease before it spread far enough to kill me, because I have a cancer that has a cure, not only that but a 95% cure rate and only 9(ish) months of treatment, because I've not been that ill with the treatment I've had and my body seems to cope well with it. Unlucky, because; well, obviously I have cancer, because if it had been caught earlier then it would have been easier and quicker to cure, because not only do I need Chemotherapy, I also need Radiotherapy with a chance of being left infertile, and of course because of my huge lack of luck with my ports.
   I've explained, or tried to explain, what my port is before. But the nurses hate me for my ports. There's constantly a problem and when I get called into the treatment room to get my grippers in, they feel pressure and when/if they manage to get them in, even after 4 or five goes, they'll get a round of applause from the small audience I seem to always have. If any of them get in in first time, they deserve a bonus on their pay cheque. I've had a port now for four months, and in that time I've had two ports, one potentially-fatal infection and five trips to surgery for it to been seen to and probably about ten line-o-grams. Most patients with long-term illnesses such as Leukaemia, which is usually a 2-3 year treatment course, only have (on average) probably two ports.

My first problem was only a month after it firstly got inserted, my line wouldn't draw back blood and got blocked. So the nurses injected a 'Mr Muscle' type fluid in the hope it would unblock over night, unfortunately no such luck. I then got blood cultures done and it came back saying I had a Pseudomonas gram-negative bug so my line had to be removed instantly. I was told not to google Pseudomonas, because I'd get scared, so of course, I googled it to find out that 60% of people with a compromised immune system (very much me) actually die from the bug so I was glad to see the back end of that one. Two days later, I was fasted again and whirled back into surgery (24 hours after I started fasting) to get a new line put back in on the other side. Giving me more scars on my neck and side. I'm almost symmetrical now.  So HORRAY end of line problems. Ohh no no. This line decided to play the awkward game and be very mobile. To the extent that I had two nurses holding it, and one inserting the gripper. (bearing in mind that the port is less than an inch in diameter.) So no wonder my left hand side is completely nerveless and I don't even notice them putting the needles in, even without magic EMLA cream. (this could be very fun in the future)
    All was going well with line numero deux (minus the mass swelling) until one day, whilst getting fluids pumped into my, liquid started gushing down my side and continued to do so for an hour or so. I went for a line-o-gram (basically an x-ray) and there seemed to be no problem. The next day, my site wasn't nearly as swollen, but still poured liquid at us after taking it out. But the chemo must go on. That was about a month ago now and even at the beginning of the week, it was still leaking. So I got a cannula put in and got my chemo through that. Imagine getting bitten by a vampire- the excruciating, burning pain, and double that- this is how chemo going into such a small vein in your hand feels. La-dee-da got another line-o-gram (I'm sure the x-ray staff think I have a thing for them) the other day which showed the contrast they injected going into my line and pouring straight out into my tissue, which is simply not good for chemo. So, OF COURSE, today consisted of fasting and returning to the beloved theatre to remove my line.

I am now, officially lineless, with only five more infusions to go until FINITO. I'm hoping to be free my mid-October. This gets me beyond excited, if you haven't already figured.                                    

Summer Lovinn'

So it seems my prayers have been answered and it's finally the summer holidays. Not quite going to go as I'd planned with 3 weeks in Portugal and a week in Ibiza, livin' it large and loose, but nevertheless, my friends are finally free. 8 weeks of freedom doesn't make such a difference in my current schedule, nor does a break from work since I haven't worked since March, but all the difference is made in that I now have people to chill with that are not my parents nor my nurses. AWOO. I also have the next two weeks drugless as that's my fourth cycle finished today. The end is drawing very near and I am VERY excited. 31st August is the last day of chemo, then I have radiotherapy, then my face unbloats to a normal shape and size, and life slowly becomes..normal. Wow, that's a word I haven't used in a while referring to myself. Well, summer's got off to a good, eventful, SUNNY start, although I think those three days of scorching weather seem to be over, but let's just hope the sun puts it's hat on and comes out to play for the next 8 weeks, please.

So summer is here and it seems as if spring has sprung too. Obviously not in the seasonal sense, as spring is before summer..but in the hair sense. Yes, that's right ladies and gentlemen, the hair is making a sneaky appearance. Although I've been told not to get my hopes up as, with two more cycles of chemo (only 8 more infusions though) there is a chance that it could all disappear again, but still. So the razor has been dug out from the deep corners of the bathroom and my legs are needing shaved. I was hoping in some ways that only the hair from my neck up would grow back-so my lashes, brows and head, but apparently you don't get to make that decision. I'm also beginning to worry that my hair follicles have some crazy boost and decide to grow me a beard. ..how awkward.

As exams are finished and everyones on skite patrol, I've actually been going out. I've gone out more in the past month than i did between new year and April. Loving reconnecting with the social side of life, although I'm unfortunately not quite the skitelord I once was. (of course this is sarcastic) But I promise that I will be once this is all over. I've been told it can take up to six months to fully recover from Radiotherapy, but as my schedule currently lies, I'm free for the second week of October and do not plan to spend a single day/night at home. People keep asking me what Radiotherapy is, and the honest answer is; i do not have a scooby. All i know is they zap me every day and it burns your throat to the point where you can't eat for weeks. Sounds pretty fun eh?

I came accross this is town on Lothian Road last week with Lily. Was significantly awkward and surprisingly hillarious to me, although very offensive at the same time. What sick sick people would cut ill people's treatment to save money for the government when there's criminals living in jail costing millions who deserve to have to pay. Oh society these days..

ChemoWHAT?

plugged up to chemo.

So, after being asked many a time, I've realised people don't know much about Chemotherapy and what it is. So, I'm reluctant to answer this question much more; it's like in second year, after subject choice, every person you come across asked you what subjects you were taking and for the 500th time that day you begin '..English, Physics..' in a droned out voice, that is exactly what this is like, so imma tell you.

Chemotherapy is the treatment used for cancer with an antineoplastic drug or a combination of these in a treatment regime. The way it works is it rapidly kills fast dividing cells which are what cancer cells are; fast dividing. The drug regime depends on what type of cancer you have and how serious it is, so I have a different regime than someone with Breast Cancer or Leukaemia. Chemo is not always given to cure a patient, a Palliative chemo regime is given with the intention to decrease the tumours and increase life expectancy.

chemo regime.

Chemotherapy originated in the early 20th century but was not originally intended for cancer treatment. During WW1 mustard gas was used as a chemical warfare and it was studied in WW2. During a German air raid on the Italian harbour, Bari, a group of people were accidentally exposed to mustard gas and were later found to have very low white blood cell counts. They then thought that as the agent damaged rapidly growing white blood cells, it could do the same to cancer cells. So in the 1940s, patients with 'advanced lymphomas' (cancers of certain white blood cells) were given the drug intravenously and the improvement was remarkable. Researchers then looked for other substances that may have the similar effects against cancer and that is how other drugs have been discovered and developed, mainly from plants.
The drugs I'm given are; cyclophosphamide, vinchristine, etoposide, etoposide phosphate, doxorubicin (also known as 'the red death' -yummy), prednisolone (a beloved steroid) and dacarbazine. And here's a bit about them;
-Cyclophosphomide is  a nitrogen mustard alkylating agent in the oxazophorines group of drugs. It was developed by Norbert Brock who synthesised and screened more than 1000 oxazaphosphorine compounds and converted the base nitrogen into a non-toxic 'transport form' which was a pro-drug subsequently actively transported into the cancer cells. This is given as an hour infusion which must be followed with a 5 hour infused hydration.
-Vinchristine is a vinca alkaloid from the Catharanthus roseus (Madagascar periwinkle) and was used for many years as a folk remedy. This is given via a syringe so only takes 2-3 minutes.
-Etoposide is made up of podophyllotoxin, a toxin found in the American Mayapple. This is given as an hour infusion.
-Doxorubicin is from a red pigment of soil in the Castel de Monte in Italy. An antibiotic was produced from the bacterium and was found to have good activity against murine tumours. Doxorubicin is extremely dangerous and can be fatal if too high a dose is given. Due to it's bright red colour and bad side effects it is known as the 'red devil' or 'the red death.' It's given an an hour infusion.
-Prednisolone is a steroid with predominant glucocorticoid and low mineralocorticoid activity, making it useful for the treatment of a wide range of inflammatory and auto-immune conditions. This is a tablet taken orally.
-Dacarbazine is an alkylating agent which destroy cancer cells by adding an alkyl group to it's DNA. It is bioactivated in liver by dementhlyation to "MTIC" and then to diazomethane which is also an alkylating agent. This is given as a half hour infusion.

...don't worry, I don't understand half those words either.

Most of these are given through a drip into my port, some are through a syringe, also into my port and prednisolone is taken orally. I've blabbed on about my port quite a lot and I've been asked what it is, and it's pretty hard to explain 'um..a plasticy, metal thing in my side where needles are put' doesn't really cut it. So these are pictures of the type of port i have (although I have a double port..so basically two) and hopefully you'll understand better.

This is a single port with a gripper put into it;
the port is under my skin so the gripper is basically a needle.

this is an x-ray where you can see
the port and the line coming out
of it into the central vein.

Chemotherapy can either be given as an inpatient or an outpatient. Luckily, I'm an outpatient and don't spend much time in hospital anymore. During my first two cycles called OAPA I was in hospital for roughly 5 days a month getting infusions and taking prednisolone for 15 days and then a 13 day off of drugs before the next cycle began. I'm currently on a regime called COPDAC where I'm in hospital for roughly four days a month, taking prednisolone for  15 days and then a drugless 13 days.


The common side effects of chemo are tough. Firstly there's the death of the much needed immune system which can lead to fatal infections- how nice. Then there's fatigue which is the side effect that's effected me most. I'm constantly shattered. This also leads to anemia which leads to blood transfusions. The reduction of platelets means you bleed and bruise easily and reduces the ability to clot the blood which is brillz, you just bleed and bleed and it never seems to stop. Gastrointestinal distress such as nausea and vomitting and of course there's the allopecia which is simply the worst of them all. This is only temporary and hair grows back, and in many cases previous straight hair grows back curly which is known as the 'chemo-perm.'

my current blood counts- best they have been since
pre-diagnosis. AYYO.

Chemo generally doesn't hurt- you can't actually feel it being dripped into you and so far (touch wood) it hasn't made me vomit, although I have felt not 100% and have been very tired. I'm guessing the whole raft of anti-sickness drugs I'm given help. The worst side effect with me is boredom, as I've told you. Especially whilst you're sitting on the ward for a good 5/6/7 hours watching some drug drip into you- not fun I tell you.

Battle of the Lashes

So the way chemotherapy works is that it kills all the cells in your body in order to kill the fast dividing cells (cancer cells.) Obviously, drugs don't have brains so they can't tell the difference between the good cells and the bad cells, so kills them all. This is how your hair comes out, the cells in the hair follicles are killed so the hair comes out and doesn't grow. And yes, ALL body hair comes out except the odd one here and there and with an exception of your eyebrows and eyelashes which thin dramatically but don't necessarily disappear completely. Thankfully, this isn't permanent and hair grows back post treatment.

I've already done a blog about my hair, which I miss deeply so I'll tell you about the battle I'm having with my lashes and brows. They started thinning during my second cycle of chemo. Not to be cocky, but I had the most beautiful, thick, long lashes, and they were my favourite, most prized feature. My brother used to get christmas cards addressed to 'Maybeline' when he was in junior school. So of course, it's devastating to see them go, my heart sinks a little more each time I find a lash on my cheek. I've stopped wearing mascara because of the fear of pulling them out whilst removing it. I've been trying various make-up tricks to cause an optical illusion that I have normal lashes and brows, some of which have worked and some of which have failed epically. But it's all about trial and error. When they started to thin, the hospital promised to set me up a 'Look Good Feel Better' session, which is a visit from someone from Maggies who show you how to do your make up to make you look normal. When I say normal, I mean it. I seem to have developed the cancer 'look' and by that I mean, the steroids have caused my face to bloat to the extreme giving me hamster cheeks and a very round face, I've developed bags under my eyes which don't look normal anyway due to my lack of lashes, my eyebrows are almost invisible and the change in hair follicles on my forehead have caused me to develop spot-like things that aren't actually spots. So ladies and gentlemen, that is the cancer 'look.'

So here you can see the difference a bit of eyeliner and clear mascara can do, and I've filled in my eyebrows with a Benefit brown eyeshadow as I'm yet to be taught properly. But still, for the tiny bit of effort and 30 seconds it takes to put that on, it's beyond worth it to look half-normal.

I managed to venture into the hallowed halls of school last week after a surprise visit to surgery. I swear, my ports hate me. I have had literally no luck with them since the beginning, I developed Pseudomonas in my first one which could have caused my death (luckily it didn't) and I get my second one, it settles down, scar is healing, swelling has gone, and BAM it decides to flip over.

But anyway, that was dealt with and I went to school. Entirely for the social benefit rather than academic. Not that we're doing much, I seem to spend too many lessons sitting 'getting on with other work' which I have none of due to the fact I've not been in school so have done no work since March. I got a lovely homely welcome back from the tech department which put me on a high for the rest of the day. Speaking of which I have a picture for Sophie. Sophie has been fascinated by my wig and has been nagging me to take it off and show her the inside of it, which of course I refused to do as we were in a classroom full of 20 girls who would find it very awkward, and I look like a pigeon with no hair on. So I promised her I'd upload a picture of the inside of my wig so she wouldn't take it off me and run away, leaving me bald and upset. Oh..and Mowat and Isla are okay too.

Cycle four of chemo starts on Tuesday, half way to success and still smiling. Except on the odd day where I'm all 'why ME' and hatin' on life. This is generally when i take a good look in the mirror after flicking through photos of pre-cancer life and be hating on my hamster cheeks and severe lack of hair, which, by the way, is kept in a River Island bag in my hair utensils basket (you may think it's disgusting, but I spent fifteen years growing it and it's sentimental.). MISS YOU BUD.