Raves to Rituximab - My Battle With Non-Hodgkin's Lymphoma 

6 Days of straight chemotherapy

Hi Everyone!

Welcome back! Sorry its been a while since you last heard off me, if im honest I just haven’t really found time to keep my blog updated recently I’ve either been busy or recovering from being ran over by a freight train 487 times, or other described as 6 days of straight chemo. A lot has definitely happened, lots of great things which I cant wait to share with you but equally, as this is a cancer blog there’s always going to be some not so great things, but nothing TOO bad so don’t worry your socks off.

I guess it makes sense to start in chronological order and where I left my last blog a couple of weeks ago and I’ll kick this off with my most recent trip to Liverpool that didn’t involve bloods or chemotherapy and boy did I have the best few days a little cancer patient could wish for. Don’t get me wrong I am enjoying my time at home in Shropshire but over the last 2 years Liverpool has really become my home away from home and after I found my feet in that city, I shortly began to find myself. The friends I have up there are more like family members (as are my friends from home but that goes without saying) and as I had unfortunately started to associate the city I love with my cancer diagnosis, being able to go back up and have a few days of my life before my diagnosis back was more medicine than any chemotherapy will ever be for me.

I was staying with one of my best friends Em who has been an absolute rock throughout my diagnosis and her and her lovely mum Maxine are two of the most thoughtful people I’ve been fortunate enough to meet in my lifetime and since my diagnosis they have been incredible, so immediately I was going to have a good time with Em and the rest of the lovely Irish girls who housed me for a few night,s due to issues with my own student house I didn’t want to go back there as I wanted this trip to be a purely positive one as I’m fighting through enough at the moment without warranting any extra stress. Walking out of Lime Street to be greeted with the radio city tower and the big blue screen on a sunny day was just the biggest serotonin boost really, I was like honey I’m home! Even though im incredibly single. Though, I did spend an absolute bollock in ubers but that’s a small price to pay. After dropping my bags and hanging out at Ems for a bit I then hopped on the Merseyrail from central to meet my friend in Formby. As I was riding the train out of the city centre and along the mouth of the river Mersey and admiring the views I was again just experiencing a flush of serotonin, the sun was shining, I had a bit of my independence back, I was taking in the views of the city and surrounding areas and people watching and it made me truly appreciate a moment that before my diagnosis, would’ve just been another ride on the Mersey rail to Formby. Im not saying you have to romanticise the dingey Mersey rail by any means, but by having that moment by myself riding out of town out of everything that had gone on, it was hard not to be grateful of the position I was in, even though in the grand scheme of things I was sat on a train, and I need to get a grip.

When I landed in Formby and got lost when I was literally following a straight road, I finally managed to find Tom. Ive known Tom a while now but his support since my diagnosis has been absolutely second to none and I will forever be grateful for how considering we weren’t that close before he has really stepped up and shown that not only is he an amazing musician (check them out ‘The Kairos’ you absolutely will not regret it) but he’s also an amazing friend. We took a short walk-through Formby and despite not seeing any footballers that could’ve WAG’ed me up I did see houses which cost more money than my mind could comprehend, but hey its always nice to set some goals for the future right. Anyway, we made it on to the beachy part and though I had been to Formby beach before Tom decided to take me some back route to some super high sand dune which is locally known as ‘the devils bowl’ or something along those lines. And he decided to drag a stage 4 cancer patient all the way up this bloody sand dune and after nearly falling flat on my face and going into cardiac arrest several times I made it to the top and I do have to say, it was worth it. The views were incredible and as it was a gorgeous day you could see for bloody miles. We then went for a little walk down the beach and just chatted some nonsense really. Again, I was grateful that after being cooped up in hospital for 2 and a half weeks I was able to stretch my legs out in a gorgeous environment and really enjoy a walk with good company. I keep saying this and I won’t shut up about it but this whole thing has made me have such a bigger appreciation for the smaller things in life and watching the sun set across the sand was just the best end to the day I possibly could’ve wished for. It was also whilst we were there that Tom captured the last pictures of me with my natural hair before I lost it, so the fact I can look back on those photos of me with hair and associate a feeling of such happiness makes it hard to be upset at the fact I don’t have it anymore, even though I’m still me I just look a bit more like an air pod now. And I’m sure when it grows back, I will have plenty more chances to get happy pictures at the beach, but for now it’s a good reminder and I can live vicariously through them on the days where its easy to sit in bed and reminisce life before cancer which something I do more often than I would like to admit. Its looking back on photos which reminds me that cancer really doesn’t give two when it’s choosing its victims. Literally less than 2 months ago I was your average 20-year-old girl at university, living in her overdraft, balls deep in a subject which sometimes still seems like people are speaking French at you and going out and more often than not having to be peeled off the pavement alongside a kebab (miss u cucuo). I know for a fact that those days will return and soon all of this will be a wild story to tell a stranger in the smoking area, but bloody hell I miss it. If I had a pound for every time I said I missed my old life I could probably afford to pay off my treatment but I know for a fact pre diagnosis ells and post diagnosis ells will be two very different people, im not particularly saying that’s a bad thing as everyday in remission will well and truly be a gift and ill bare that in mind, but ill miss being naive for sure, and ill miss the days where cancer was just something that happened to someone else, because it is! That is, until it isn’t. if you get what I mean.

 

Anyway, the next day I was in Liverpool Frankie very kindly picked me up in his fresh new whip and him and I went for a Wagamama along with Harry, Timmo and Web. The sun was shining and seeing the boys is always a fantastic time and they are honestly like my big brothers, and I would be entirely lost without them as they have looked after me and kept me out of harms way more times than I care to admit. I also really appreciated them coming out just to see me, again it’s the little things when you have cancer and just being around people who make you feel truly loved to make you feel 10x stronger. I’ll give the soft stuff a miss for now anyway because I know they’re all going to take the piss out of what I just said, even though they’re even bigger softies themselves. Later that evening I finallyyyy had an excuse to make myself feel pretty, every girl will relate to me on this one as after having no excuse to make myself look nice for the last 3 weeks after being in hospital, I could once more dress myself up and there is no bigger confidence boost. I also wore my wig out, partially because I wanted to ease the transition between my natural hair and the wig for myself and those around me, but also because I couldn’t be bothered to do my hair and the wig is just drop dead gorgeous. I got ready and Caitlin then came to Ems where we sank a bottle of wine in about 10 seconds flat and headed out, God I have missed that girl. Megs chosen place was San Carlo and I had heard quite a lot about this place, so my expectations were quite high. San Carlo can only be described as a scouse prinny place and if you don’t know what a scouse prinny is then I guess just imagine the opposite of me as I have been personally told I am ‘not the type of bird you take to San Carlo’ whatever that means. So anyway, the bird whos not the type you take to San Carlo walks into San Carlo and I am finally reunited with Meg and also other friends who were there, also considering the speed I drank the wine beforehand I seemed to find it very easy to make new friends. The meal itself was average and overpriced if im honest but the company was absolutely priceless, and it was lovely to be able to celebrate with Meg on her birthday. It once again really really is the little things in life like going for a meal that you just appreciate so much more, to be able to wear a nice dress, nice makeup, see my friends and just feel like a normal girl again was indescribable and I just had so much bloody fun (and wine). The next day I also got to see Ellie T and Kat which was fabulous as I really do miss living just round the corner to them, and then I went to Clatterbridge to get my PICC line redressed and then hopped on the train home and when I tell you a girl was exhausted, I mean this b*tch really did sleep well that night. Worth every minute though.

The next section of my blog isn’t quite as feel good so there’s a small pre-warning for you guys. Its kind of difficult for me to find the words to type out to describe it really. My hair was coming out pretty thick and fast and as upsetting as it was, I was okay with it. I think it was because I still had the vast majority of it, and it was just the morning brush which was the traumatic part and once that was over I could crack on with my day. Because it was falling out so fast, I decided not to wash it for like a week because that accelerates the process however, the day before I was going in for my next chemo, I decided to treat myself to washing my hair (imagine that being considered a treat). This was partially because I wanted to be comfortable in hospital as I hate having greasy hair and I just felt dead greasy and manky if im honest and thought I may as well do it before my next chemo. So, I hopped into the shower and reached for my purple shampoo, for that would be the last time for the foreseeable future. I scrubbed away at my hair whilst being as gentle as I could to prevent hair loss. I didn’t do a very good job put it that way. I went to run my hands through my hair after I had washed the soap out and my hair almost felt dry? Like it was all together at the top of my hair I can’t really explain it. I tried prying it apart with my hands and about a bottle of conditioner, but to no avail. I phoned my mum whilst in the shower in tears asking her to bring up a hairbrush and she brought me a comb. It was then a case of just hacking away at my hair best I could and pulling the clumps off my scalp and throwing them in the bin and I just watched the pile in the bin go up and up and up and then up some more. I finally finished and before looking in the mirror put a towel on my head because I didn’t want to see the damage I had done, I just new it was bad, like BAD bad. I lay on my bed and informed my friends of what had just happened and then I couldn’t even bring myself to cry, I was just honestly numb like, my long blonde hair that had been a part of me since I was about 4 was just sat in my bathroom bin. I rely on being blonde as part of my personality more than I care to admit, like I LOVED being THAT blonde to everyone elses brunette because blondes really do it better. However, I was well aware of the fact almost anything does it better nothing. I hadn’t lost all my hair, but when I slipped that towel off my head I really wish I had. I looked somewhere in between the guy in the wheelchair off little Britain and Doc from Back to The Future so I will leave the rest to your imagination.

The next day I headed up to Liverpool again this time, however, was for a very different reason. 6 days of straight chemotherapy which is f*cking fantastic. Still though, I can’t really complain as it is saving my life. Equipped with enough to last me 3 weeks and significantly less hair but a lot of motivation me and my mum headed up, obviously stopping for a mcmuffin on the way. Emotions were pretty high on that drive to say the least, I was rather nervous just because it was SO much chemotherapy, like, so much. My chemo had changed slightly from last time, I think I mentioned it in my last blog, but I don’t expect you to remember so this time I was having dose adjusted EPOCH-Rituximab therapy which, for those of you who think that sounds like a load of gibberish is basically6 (I think) infusions over the 6 days as each one lasts 24 hours. When we arrived, I was showed to my room and the view was spectacular (I’ll attach pictures below), having chemo is shit, there is absolutely no doubt about that but having a pretty view definitely makes it easier. Mum left and I settled myself in. Monday morning I was woken up and taken down for a chest x-ray that I unfortunately wasn’t allowed to look at, it was just to check for any infections in my chest and luckily it came back all clear so I was able to start my treatment later on that day and first up was my rituximab. Once again, the antihistamine went in and I was out for the count. Later on that day the lovely Ellie T and Em came to visit to offer some moral support whilst i started my first long infusions and shaved my head. That’s right, I shaved my f-ing head. Like what?? This time last year I had pink hair and now I’m sat in a cancer hospital with a nurse holding a pair of clippers to my bloody scalp. Life moves fast. However, it was a really positive experience if I’m totally honest and I’m incredibly lucky to have such incredible friends like Ellie T and Em who made that possible. After the hair came off, I felt like a new person and like that chapter had finally closed and I actually didn’t hate the way I looked bald and I still don’t. Every single girl I know has a problem with how they look, and nobody ever truly believes how beautiful they are but if I’m totally honest being bald has given me a new appreciation for my face and my features that I didn’t have before. Don’t get me wrong I still don’t look in the mirror and see a super model but it made me realise that perhaps I’m not that hideous after all and I don’t actually look too bad.

Over the next few days, I had more chemo but if I’m honest it wasn’t that eventful and I just felt dead tired but luckily I was still able to have lots of lovely visitors luckily. Caitlin and Jono came through on the Monday and we enjoyed a caribou poutine together and just chatted about crap for a few hours really, but its just stuff like that that I really miss, talking about stuff that doesn’t matter with people that do matter, stuff that a normal 20-year-old should be doing. I was also not best pleased as despite my picc line I still had to be injected with a cannula due to needing two infusions at once, so I was hooked up in both arms. This made sleeping quite difficult for me along with other things as I just felt a bit overwhelmed and tangled in lots of tubes and it stressed me out quite a lot, so I was prescribed a sleeping tablet which was a life saver really. On the Wednesday I was moved up to the TYA ward and unfortunately was back facing the royal, though I find some comfort in the fact I could see back on ward 3A and remember how far I had come since my time on there and how much I have learnt along the way and how much has changed. As cringe as that sounds it is just so true, cancer teaches more than you could ever be prepared to learn about yourself and those around you. People you once considered yourself close to show their true colours and they aren’t so bright but then others surprise you with just how beautiful their colours are and in a way, I am thankful to cancer for showing me that and allowing some doors to close and lead on to better open ones. Anyway, I got side tracked but on Wednesday mum came to visit me which was nice, she only came to visit once during this hospital stay as I like to utilise being in Liverpool and seeing my friends up there whilst im there but obviously its still nice to have your mum.

On Thursday it was paddy’s day, which was really really crap. In Liverpool paddy’s day is like Christmas day, but with less presents and more Guinness. It is literally the best day on the calendar, everyone’s dressed in green the sun is out and you’re pissed as a fart by 1pm. Apart from this year there was no Guinness just chemo for me! Luckily whilst everyone was celebrating Tom managed to find some time to come and visit me which was just what I needed as despite I was missing out it just gave me something to look forwards to and brightened my day a bit really. For an up and coming rock star, he looked like one straight out of the 80’s (even though his hair isn’t far off being that length and the only real difference is the colour).

On Friday the lovely Timmo and Harry came and brought me some chicken nuggets and we were able to spend some time in the social room for a few hours in the evening. Again, just seeing these guys has such an impact on my day and really lifts me up and gives me the extra boost I need to get through all of this chemo, Honestly, friends like these and some anti-sickness and any amount of chemo seems like a mountain I could climb.

Saturday was discharge day and after finally getting my hands on some Wagamama ramen again it was time for a well-deserved sleep in my own bed, not hooked up to any tubes.

On the Sunday I genuinely felt more exhausted but still dragged myself up for a walk to see my horses and when I tell you it absolutely wiped the socks off me like oh my god, I spent the next two days recovering from it ill tell you that. Which is crap because the weather is so nice, but nope I must spend it in bed, closing my eyes for 10 minutes for every 5 that they’re open. It is easy to get yourself in a really dark horrible place when your life goes from a party loving student to a chronically ill cancer patient, but it is once again, good friends who pull you out. This time the good friend came in the form of Lauren and her mums’ delicious cakes. Lauren and I hadn’t seen each other since our friends 21^st in July, it was nobodies fault its just one of those where life gets in the way unfortunately. Luckily for me though me and Lauren became friends at uni and then realised we didn’t live all that far from each other at home so she came over and we headed into town and found a beer garden which overlooks low town and enjoyed a pint and some sweet potato fries whilst watching the sunset and honestly, everything felt like it was going to be okay again in that moment and I can still be a normal person and do normal person things.

Wednesday was spent recovering and Thursday was just an absolutely beautiful day. It started off with a blood test at Shrewsbury and then on the way home me and mum stopped for a spot of lunch by the river in the sun which was gorgeous and then we picked up the newest member of the family which is a little hamster named Marie Curie and he is the most adorable ray of sunshine in my life even though he is insistent on chewing his bars all night, I will forgive him because he is just so adorable. After I built Mr Maries cage which literally took every ounce of strength I had. Eloise came over and after enjoying some cold ones and crisps and hummus in my garden we went for a lovely meal and again Thursday was just one of those days that made me really appreciative and grateful to be alive. I might not be living exactly the life I want to at the minute, but the sun still shines and I still have the best friends and family I could wish for and the gaps just fill in themselves really.

Today is Sunday and I have finally gathered up the strength to take Coco for a ride and it was just simply lovely, trekking around in the sunset with some liquid DnB on really is just another form of medicine and now I look forward to another few days in Liverpool.

At the end of my last blog I encouraged a Q and A and I received a totally mind boggling number of answers which in the end created a massive total of …. One! So thank you to Goddersgram for the question which is whats my fave thing to take to the hospital? And if im going to answer this question entirely honestly the answer would be my cuddly sloth from Kenji in Liverpool, its so soft I guess it would be considered a squishmallow? But honestly when the nights get long and lonely and you can hear some old woman wailing, giving a sloth the size of your torso a big cuddle gets you through. The only other thing that comes slightly close would be my own blanket. Partially for because it just makes the bed look a bit more yours and partially because hospital bed sheets are so damn uncomfy!

Anyways, stay safe!

Ells

Xxxx