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

Week One (and a bit)

 Sorry to keep you waiting!

Hi guys (all 10,000 of you)! welcome back to my blog! sorry its been a longer wait than i first anticipated, a few things have changed; i have received a full diagnosis, my chemo has changed, my hair has started to come out and after an argument with some close friends my perspectives have changed too. As some of you may know my blog got leaked before it was quite finisheds so if you read that post and now read this you may notice it has changed a little, my first draft of this second entry was a really positive one and thats because that first week at home was just that, really positive! i still wouldn't say im not being positive in this updated entry but i wouldnt be being real with you or myself if i was to release the last draft i did and acted like nothing was wrong, as not only is this blog for you to read and be informed, its also for me to look back on and whether that is for me to remind myself of good days and smile about them or whether it is for me to look back on my not so good days and remind myself on how strong i am to pull myself out of them, it will be written down here as thats what i set out to do. A (probably too) honest account of a 20 year old with stage 4 cancer (still blows my brain to say that).

We'll get the sh*t stuff out the way

In fairness, i wouldn't really class this first bit of information as sh*t but the effect its had on my chemo is, so basically as mentioned in my first paragraph i have received my full diagnosis which is, drum roll please ............. primary mediastinal large diffuse B cell lymphoma (not going to lie i just had to read the full name on cancer research as i get the parts mixed up and i've just read a heading called survival which kinda reminds me that this actually can be a fatal illness, lol!). But yeh, there it is finally! my full diagnosis! it didn't come as much of a shock after speaking to my doctor in clatterbridge when i was first in there and he said he thought it could be this, mostly because of where my mass  first presented which was behind my breast bone, but also because although non-hodgkins is more common in older people, this specific type is most common in 20-30 year old females, so i fit the bill pretty nicely. If a cancer diagnosis can be described as good, i would say this was a good diagnosis as my mum had said she feared that knowing me it would be some super rare , little to no research type of lymphoma so it was nice to know that for once in my life, i had decided to be pretty normal. However, this diagnosis does mean a new chemo regime (fear not, it still includes rituximab so the blog name shall be staying), whilst my chemo before was given as an outpatient and i only had to go in for 1 day, this has now changed and i will be having 5 days of straight chemo (yes, that is 5 days, 24 hours a day for 5 days hooked up to a chemotherapy infusion) and as you can imagine, that is just really going to be the time of my life! like i seriously cannot wait to see all my friends going out and having fun whilst i will be hooked up to a chuffing cancer machine on wheels for 5 days, enthralling! My chemo is still R-CHOP but now with the introduction of an E (I would love to be able to tell you what the E is but my wonderful mother has lost the information sheet before i even got chance to read it, anyone would think that she is the cancer patient here). Being treated as an inpatient unfortunately relies on the availability of a bed, so instead of being given exact dates to expect my chemo, i will instead be put on standby when the 3 weeks of my cycle im currently on are up and then will be invited to Clatterbridge as soon as a bed becomes available. Despite this not being great i am slightly glad i will be in hospital after having my chemo for a bit as it just puts my mind at ease more than anything knowing that if i do have any adverse side effects, im in the right place and have help on hand 24 hours a day. 

The hair. The f*cking hair. Don't get me wrong, im not bald YET but i am full steam a head to arriving at destination egg head (not the type that your nan watches on TV either). I hate moaning and being oh woe is me but bloody hell, i dont think theres any words to describe how truly sh*t it is waking up in the morning and brushing your hair and seeing the hair brush just fill up with full length hairs, or running your hand through your hair and just seeing hairs just line the little inbetweens of my fingers. Like, as a 20 year old girl one of the small pleasures in life is doing my hair whilst getting ready to go out with a glass (definitely not a bottle) of wine by my side. My scalp aches and my hair is getting thinner and it is just well and truly crap. I am scared about what im going to look like if im honest, obviously everyone tells me i will still look gorgeous but im just terrified to look in the mirror and see a cancer patient and not myself if im honest, thats what i am most worried about, like having a bald head as a 20 year old girl i may as well just wear a sign around my neck that says I HAVE CANCER in every single language so the whole world can see. I have a beautiful wig which i am so grateful for, but nothing is quite like your own hair, i have been THAT blonde ever since i was born and now it just feels like im watching a piece of my identity slowly fall away from me everyday, its crap! I have said however, when it really starts to come out in clumps ect and im noticeably balding, i probably will brave the shave, partly for myself as this bit is traumatic enough i can only imagine what that will be like, and also because i would like to donate my hair. I have looked on the little princess trust and despite my high and low lights my hair is still eligible, I know how empowered and confident my wig made me feel when i first put it on, so if i can help another girl feel like that by helping contribute to a wig then that would be amazing. If the hair is going to come out either way i would like it to at least be going to help out another girl feeling similar to me rather than in the bin.

Like i mentioned in my little intro i have also had a bit of a scrap with a couple of my closest friends. I am by no means here to b*tch about them but i wouldnt be being honest if i didnt include how it had affected me in this blog and i do hope to reconcile soon, i just need some time. Strangers that have read my previous blog have even said its very clear from just reading how much my friends mean to me and anyone that knows me knows i wont shut up about how i do have the best friends in the world, and that still very much stands! I truly truly truly hate conflict and arguing, especially with people that mean a lot to me and will really try my best to avoid conflict, however thats not always a good thing as i tend to push things to the side and sweep them under the carpet, until the pile under the carpet gets too big and i lose my marbles, and with everything thats going on, like you know, having stage 4 cancer, someone may as well have put a rocket launcher in said bag of marbles. Sitting in your childhood bedroom and watching the world move on whilst your at a standstill is probably one of the hardest parts of having cancer, dont get me wrong i love seeing my friends happy and watching them go out and have a good time brings me a lot of entertainment (Caitlin, i am thinking of you in maccies as i write this x) but bloody hell do i wish i was there. As much as i enjoy being at home too, it is sh*t being plonked in the middle of nowhere without even having a car after i have become used to having full reign of Liverpool and doing what i want, when i want to do it. As im in my third year, a lot of my friends graduate too this year and its crap knowing i wont be able to enjoy their last few months with them and with the 'whole group' being together, it just really really sucks as its these guys that have made my uni experience be the time of my life. Not only am i affected by fear of missing out but also the fear of my illness, i am positive ill kick this in the ass in absolutely no time, but there is always the fear that i don't, like i don't know if i'll be cured in 6 months, a year, 2 years, if i'll ever be cured or if the fecking thing kills me! i would like to think it won't but these are just all so many unknowns, as well as watching a piece of my identity fall out everyday (literally fighting away tears as i write this lol) it is crap and nobody really understands what its like, and i would not even wish this on my worst enemy. All this considered i hope our petty argument reaches a resolution soon and we can go back to causing absolute mayhem on the streets of Liverpool in no time.

This part is kind of like a diary entry of my week, so if you're interested please enjoy some lighter reading!

Thank you, thank you, thank you!!

Oh. My. God! first and foremost i just need to say the BIGGEST thank you to literally every single person who has read my blog, liked, shared, commented and messaged me, you all have no idea how touched and inspired i am by every single one of yours support! from old friends, to new friends to complete strangers, i cannot even fathom the words to describe how grateful i am for every bit of support i have received! a few rather big thank yous are due to my wonderful parents and grandma for funding my new wig (i cannot wait for you guys to see the wig, it is OUTRAGEOUSLY gorgeous, a bit like me!) to Georgie for signing herself up for the humongous challenge of 100 miles in March for the Young Lives VS Cancer charity and to everyone who has shared and donated. Another big thank you is also to Emily Brick and her team of Brickettes for raising another lump sum of money for young lives VS cancer by selling socks! And once again to everyone else for the endless acts of kindness and support.

Despite all the negatives which are obviously going on in my life at the moment it is the support and endless kindness from people which makes me only really see the positives, obviously some days are easier than others but on the whole i cannot help but have such a positive outlook on this whole situation because of the basic concept of human kindness. You're all amazing, myself included.

One final thank you before i move onto the nitty gritty cancer-y bit of this whole thing which im sure you nosey people cant wait to get your teeth into is again a thank you to the nurses in Clatterbridge Cancer Centre. Again, even though this place is Atlantis the Palm compared to a Travelodge when pitted against The Royal, it is the nurses which have made my stay here bearable. They are all just the loveliest people ever, and although they sort of have to be as nobody wants to be looked after by a miserable git if they have cancer they are just the biggest superstars in the world. Even though ALL the nurses are heroes in their own right, there are some i just HAVE to give a special mention to; first of all is Ellie the student nurse, oh my god when i tell you this girl is just the kindest person i have ever met, i would have cancer every day for the rest of my life if it meant i could hang out with her! nothing is too high or too low and you can just genuinely tell she is happy to help. Then to Fiona who has the prettiest smiliest face and the best fake tan in the world thank you SO much for sorting out my PICC line for me (for those of you that dont know what a PICC line is, i will get into that later but i honestly think mine is the best thing since sliced bread and everyone should be fitted with one at birth). To the lovely Sarah who has been working everyday since i have come, thank you very much for being the comforting mom like figure i really needed during my time here, youre incredible and you make having cancer not seem so end of the world-y, and finally to the lovely lymphoma nurses Jess and Lauren. You guys are just incredible and so supportive in the best way.

And with that, lets get things underway!

Monday

So, if im completely honest, my last blog was a bit of a fraud as i hadn't even started the rituximab part of my chemo yet, so my sincerest apologies for that. However i did start this on Monday just gone (the 21st as im unsure when you're reading this [though i will be highly offended if you arent reading this straight away after refreshing my page for a week straight waiting for the next update]). Before the rituximab was administered the nurses gave me some anti-sickness and some antihistamine, just as this is the drug that i was most likely to have a reaction to. I had been told that the antihistamine might make me sleepy as it has been known to knock even grown men out as i was given a 10mg dose compared to the usual 4mg, i however believed i was built different and would not be affected by the antihistamine. I was not built different. After the antihistamine was administered via my PICC line i immediately felt what can only be described as 'woozy'. I asked the nurses if it was normal to feel tired straight away to which they replied it was, so i then started to put my bed down as i was becoming too tired to sit up. My poor mum then came to visit, and i say poor mum because she drove all the way up to liverpool to see me and then i was not really in a fit state for communicating with anyone, her own words about me were "the lights were on but nobody was home" which i think speaks volumes. 

The rituximab finished with very little side effects luckily though i had to be kept in overnight and given a drip just to give my kidneys a helping hand. This was again given through my PICC line and ill get into that now and let you guys know why it is just my favourite thing in the world (you know youre going through it when a tube in your arm gets you this excited omg).  A PICC line is an abbreviation for peripherally inserted central catheter, which no despite its name is not used to remove your piss. It is essentially a long thin tube which goes in through a vein in your arm and is passed through to the larger veins near your heart. It is inserted under local anesthetic and an ultrasound is used to locate the veins. The insertion procedure certainly isnt a pleasant one as although it is not painful you can feel an awful lot of tugging about going on inside your arm. However for me this was a small price to pay, as for a 20 year old girl my veins were absolutely f*cking dreadful. I mean, dreadful. The record for the most attempts at getting a cannula in me stood at 3 different doctors all having 3 attempts in one sitting, which means i was stabbed NINE times before one of them could find a vein. I've never been particularly bad with needles, but when it gets to that point you begin to come quite sick of them, which is why the PICC line is the love of my life (yes if you read my last blog Ryan has been knocked off the top spot by some purple tube sticking out my arm, so it was probably never meant to be). 

Other than getting my final part of chemo in the form of rituximab, Monday was pretty uneventful. Probably got something to do with the fact i was quite literally away with the fairies from 1pm onwards.

Tuesday aka. Freedom day!

After the longest 2 and a half weeks of my life TUESDAY WAS THE DAY! But oh my god it was also the longest day of my life. After waiting for what felt like 7 years for my mum and sister to arrive and take me home they finally turned up. However, i received the news that even though the horrendous daily blood thinning injections were coming to an end (if you know, then you really do know) due to my time in hospital coming to an end, i was not out the woods yet as i had to then have immune system boosting injections for 5 days at home. I was given the decision of either being taught to do them myself, or have my mum do them. Despite having to inject myself before back in 2017 with tinzaparin, i opted for the option of having my mum do them. This was a risky decision as as wonderful as my mum is, i think everyone that knows her will agree she is probably one of the last people you want coming at you as she has as much medical knowledge as my dog Roxy. In fairness she administered the injection pretty well and continues to do them. We were then waiting for a further 7 years for one of my medications (i'll upload a picture if i can as i have a whole pharmacy)  as it hadnt been prescribed even though i continued to need it. In the end a doctor had to write it up and we said we would collect it the following day as it was gone 7pm and we had a long journey home.

On the way back we stopped by KFC and i ate my body weight in fried chicken and headed home. I got a bit emotional on the way home, just as it felt quite sad to be leaving Liverpool. A much as i love home Liverpool really is my home away from home and my friends there are like a little family to me, and leaving the hospital to come home and not go back to my house there really kind of symbolized that this was the end for this uni year for me as i knew it. I just missed my friends a lot, not even the going out side but i missed just cooking some noodles in the kitchen and belting out 2014 5 Seconds of Summer songs with my housemates, or bitching about who was using all the toilet roll (no comment), its the little things i miss the most, but this isnt forever just a temporary pause.

Before arriving home we made a special stop to see my oldest best friend Alice and her wonderful family. Alice is just one of those ideal friends, we both understand how busy we are and dont see each other nearly as often as we would like, but when we do its literally like nothing has ever changed. Alice and the rest of her family have always been far too good to me, however they decided to take this to the next level (as the Rileys always do) and have offered to take me skiing with them in Austria over the new year! this is after years of saying they cant take me as i am just far too accident prone (in fairness i cannot blame them as i have broken 11 bones in the past) so this is just another wonderful gesture during a sh*t time and gives me something to look forward to! I feel like i am going to be far better at the Apres than the skiing. 

After that i FINALLY got a well deserved sleep in my own bed.

Wednesday aka, Ben (Hob)Day

After waking up and making myself some breakfast and heading back up to my room, i heard my mum come downstairs and shout "OH MY GOD ELOISE" and my immediate thought was sh*t what have i done. I then heard her run up the stairs going oh my god oh my god oh my god, and realised this was excitement instead of me leaving the milk out or something. She then came in my room and was like oh my god Eloise youll never guess what, at this point i was like just TELL ME WOMAN! she then explained how our friend Kelsie had messaged Ben Hobday (if you're reading this hi Ben) explaining my current situation, and told my mum and my mum had then emailed doing the same. She was so excited as she had got a reply saying Ben wanted to call me later on! For those of you who either live under a rock or just aren't horsey, Ben Hobday is one of my biggest idols and has been for years. Ben himself was diagnosed with Non-Hodgkin's lymphoma a few years back, which is part the reason as to why my mum got in touch. He was always an idol of mine however he became even more of a hero to me after he beat cancer and then rode his V8 super-cob, Mr Mulry around Badminton (if you are unsure what Badminton is imagine horses jumping over solid sticks bigger than you and you're almost there). So to be told he was calling me was absolutely unreal. I would also like to thank Ben for inspiring me to follow in his footsteps by riding round badminton after being given the all clear, just in a few shoe sizes smaller and i aim to do a 80cm event on Coco when i get the all (if all goes well!) as it has been a good few years since i last galloped out the starting box.

After this excitement i went for lunch with my lovely cousin Poppy, it was lush to have just a general catch-up and just get out a bit whilst i still can, though obviously i have to be cautious with what i do as an infection is really the last thing i need. I also think its as beneficial for my family and friends to see me during this time as it is for me to see them, just so they can rest assured that i am (un)fortunately (depending on how you look at it lmao) the same Ells that i was before my diagnosis, i just have a bit of extra sparkle !! (said sparkle being stage 4 cancer but we move)

After a quick nap because i was utterly exhausted i was eagerly awaiting my facetime off Ben, and then he called! After Lara, mum and I had got over being starstruck it was genuinely so good to speak to him about his experiences with the b*tch that is Lymphoma,, he was honestly just so insightful and had so much advice regarding pretty much everything and gave me some very motivational words, i could not believe that i was just sat there chatting on facetime to one of my idols growing up and he was just so down to earth and lovely, like the fact he took half an hour out of his day to speak to me was just so so lovely and really really made me smile during this shit time. Don't get me wrong i wish it was under a different circumstance but hey, cancer perks! He then had to leave as he is currently on the sunshine tour showjumping in Portugal, so good luck with the rest of your time over there Ben!! (he also told me he had read my blog which is just mind boggling).

An interesting Thursday

I only left my bed to wee and eat. The end.

Friday aka, wig day!!

An early start that was INCREDIBLY worth it! On the drive up to the Wirral i had incredibly mixed feelings, dont get me wrong i had been excited to get a wig and was very grateful that i was in a position where i could afford a nice one, however i had wished that i didnt need to have one as as a  20 year old girl, loosing your hair is kind of your worst nightmare. I remember after my first chemo i had hardly slept a wink, i just kept waking up to check all my hair was still in my head, i knew it wasnt going to fall out straight away but i was just dreading when it did happen and had convinced myself i would be the first person in the world to loose every inch of their hair immediately after their first chemo. I was also incredibly worried that i would hate all the wigs, even though they looked gorgeous on the website i was convinced they would look hideous on me.

We arrived at the salon 15 minutes late unfortunately but luckily thanks to the lovely girls in the salon this was not a problem. The lovely Lily then sat me down and already had a selection of blonde wigs for me to try. Immediately i was drawn to the bleach blonde wig, though just like Lily said, due to the fact it had no root i tried it on and it just didnt look right, so that was in the no pile. Next, was a similar shade of blonde but this time with a bit of root, immediately i put it on and was like oh my god i NEED it (little did i know this would be my reaction for the next 3 wigs and it would take me an hour to decide). I then tried on two similar but equally gorgeous ashy blondes with a darker root which i absolutely LOVED and put them in the yes pile. I then tried on a dark coloured wig, expecting to hate it as i have been blonde my whole life, i was however incredibly surprised and in fact absolutely loved that colour, and if i had won the lottery, i would have 100% walked away with it as well! It then got down to deciding which one from the 'yes pile' i would be taking home with me, and after facetiming Freya, my grandma and my sister, trying them on outside in the natural light and taking photos of all 3 and lining them up, i finally walked away with the GORGEOUS 'Talia' in 22-24". Literally, the wig of dreams i am sooooo lucky!!

I would just like to give a special thank you to @prettylittlewigs_byhollie on instagram and all the girls in the salon, especially Lily who helped me try them on for making something that i was dreading doing an incredibly fun and confidence boosting experience! I even wore my wig on the way home when we stopped for lunch with mum i just loved it so much. 

I then saw my lovely friend Sarah, who's horse is currently at our stables. Sarah is one of the kindest lovely people i know and yesterday was no exception as she brought with her the most thoughtful hamper of goodies for me bless her heart. Unfortunately, me and Sarah can both relate on a certain level as to what its like being a young adult with a chronic illness, especially on a level of how sh*t drip stands can be, like honestly how difficult can it be to wheel around a big stick on bloody wheels!? But equally it was lovely to have a long awaited catch up with hot chocolate and marshmallows whilst fussing the lovely yet fluffy Tia who had been brought in for some snuggles with Sarah and watching the sun go down over our gorgeous stables.

Breakfast at Tony's

On Saturday i finally got to see one of my friends George who i hadnt seen for over a year. Me and George became friends when we flew over to Tanzania with school to participate in some voluntary work and have been close ever since (i think 10 days in the middle of Africa is about as good a bonding experience as you're ever going to get). We decided we would go to spoons for some brekkie due to my dizzy as i work/worked (i have 0 idea what my employee status stands at lol) there. However, Bridgnorth which is the single most boring town in the world decided to be exceptionally busy that day and there was not a single parking space after doing 3 laps of the town, though i am pretty certain that these were not all filled up to attend the protest outside the hospital as we witnessed a huge number of 6 people holding up a banner. Driving through the high street was also like playing a game of spot the under 60.

George then decided he would take me to the greasy spoon, aka Tony's. I was also wearing my wig to get used to wearing it in public and i do now feel like wearing 24" curls was a bit overdressed, but it never hurts to be the prettiest in the room! But it was lovely to have a catch up over a tasty brekkie, even better that George didnt even realise i was wearing a wig until i told him!

Sunny Sunday

On Sunday i was meant to be joining my friend Georgie (the amazing one thats raised over 2 grand) for a ride on our lovely horses, however i woke up and my back had unfortunately decided that my sciatica was going to raise its head again, so Georgie just came over for a cup of tea instead. I haven't seen Georgie in ages, but she was still just as gorgeous inside and out and it was fabulous to have a gossip with a side of tea.

Later on in the day Eloise and Molly came over all the way from Leicester, and brought with them a lovely bag of goodies, cake from Honey's birthday and the most amazing build-a-bear frog with the cutest little message from them both, its actually quite funny as they explained how they were telling the lady in build-a-bear also said she had lymphoma 17 years ago when she was my age, funny how the world works! 

My lovely week was finished off with a lovely roast and life was good for that of a cancer patient!

Q&A

To make my blog a little interactive i would like to answer some of your questions in my next installment! so please fire away in the comments!

Hugs and kisses,

Ells Xxx 

cute pic of Roxy for good measure <3