Raves to Rituximab - My battle with Non-Hodgkin's Lymphoma
The beginning (I guess?)
Introductions and that
First of all, welcome to my blog! I have absolutely no idea if anyone will even be arsed enough to take the time out of their day to read this, but if you have then fair play and i hope you enjoy my waffling about the roller coaster that is a (kind of) out of the blue cancer diagnosis. I guess im really writing this for myself to look back on when i've kicked the b*stard that is lymphoma right in the balls and remind myself of how far i have come, but if this helps anyone with their own journey (cancer or not) or if anyone's just curious and fancies having read then i hope you find what you're looking for in this blog and enjoy your time here! and with that i'll begin.
The very start
I guess the VERY beginning of all of this madness would have to be when i was incredibly rudely awoken with what i thought at the time was a sort of growing pain in my right arm, starting at my chest and running all the way down to my finger tips. I was a bit shocked at the time as it really had come out of nowhere but i wondered downstairs, necked some paracetamol and tried to get some sleep. Anyway, it got to about half 7 in the morning and i was still awake and anyone that half knows me knows the only time im ever up that early is if im still partying so i was quite clearly in a large amount of pain, so i begged my mum to book me an out of hours doctors appointment (yes at 20 years old i am still incapable of booking my own doctors appointment). My mum was convinced that i had injured myself when i came in rather tipsy a few nights ago, and by rather tipsy i mean crashing around the place to the point where i got wedged between the wall and the toilet and ended up putting my hand down the toilet to try and lift myself up <3 so she was well within her right to think it was due to that (spoiler alert: It wasn't!!). Anyway a trip to the doctors later i was equipped with some stretches and some cocodamol as i had been told that this pain was muscular and it should ease within a few weeks, so i flew up to Liverpool later that day, had a belter new years with all my pals (minus Freya as she got ran over but thats another story) and carried on with my life as if nothing was wrong.
A couple of weeks later i was feeling incredibly bored and as i am a complete sl*t for a nice sunset i asked my pal Ellie T if she fancied a nice little sunset stroll down the docks and to grab a coffee, and luckily for me she did, so off we went. Pretty much as soon as i got off the bus in town my arm started to ache again but i didnt pay too much attention to it and thought it would wear off. However, it didnt and after watching the sun go down i suggested we head right back as i was starting to be in increasing amounts of pain and decided it was best to phone 111 on the bus on the way home due to the stupidly wrong wait times (luv u NHS but thats just facts). I then crawled through my front door, in so much evident pain that my house mates boyfriend who let me in got Jenny to text me to ask if i was okay, 111 then put me on a wait list for a consultant who rang me 5 hours later who then referred me to a doctor who then booked me a slot at A&E between 1 and 2 am so i reluctantly went. When i arrived to A&E it was gone 3am before i was seen by a nurse who was going to take some bloods and an ECG which was then going to take a further 3-4 hours (which in A&E time is at least 6) for a doctor to even look at and as i was tired and fed up, i stupidly left.
A few days after that this pain in my chest and my arm persisted so i took myself back to A&E at the much more sensible time of 11am and had the bloods and ECG done and was told i tested positive for a blood clot after a D-dimer test. Obviously this wasnt great news so i was sent for a chest x-ray and given some blood thinners and told i would be given a CT scan appointment the following day and sent home. I wasn't THAT concerned if im honest as i felt like if it was anything to worry about i wouldn't have been sent home. The next day i was in the labs working on my skills for my dissertation major project when The Royal rang me up and told me they would like me to go in ASAP for a VQ scan, as they deemed a CT scan to be too much radiation for my young body and thought a VQ would be more appropriate as they were scanning for a clot in my lungs. So i left my labs and trotted up to The Royal where i went to nuclear medicine for my VQ scan. The process of a VQ scan was pretty horrendous, you have to breathe in a radioactive gas and then lie still for 20 minutes whilst a machine moves around you and takes pictures of your chest, then you receive a radioactive dye injection and lie still for a further 15 minutes whilst the machine does the same thing again. Anyway once that was boxed off i was told to come back tomorrow for my results, so i did just that. VQ came back all clear, yay! but also still no answer for this mystery pain, however it cant get worse than a blood clot in my lung and its not that so good news i guess! lol! anyways, i was referred back to my GP as the royal didn't really have any more explanations for my pain and thought the GP might help me get to the bottom of it. After speaking to my GP and really assuring them that this pain was not anxiety related and all in my head i was prescribed some anti inflammatory medication to see if that helped and also referred to a physio to see if it was muscle pain, and i went on about my daily life. Until, i was in the library working on an assignment when i received another phone call off the royal explaining how a radiologist had looked at my chest x-ray and had noticed some slight contouring and they would like me to come back in for a CT scan the next week. I remember asking if i needed to continue taking my blood thinners, to which they replied "no, its too big to be a blood clot" which rang slight alarm bells for sure. However i didnt think TOO much of it afterwards and got on with life in general, which included me having the absolute time of my life seeing my favourite techno DJ Peggy Gou at Blackstone street warehouse later on that week (hence the name Raving to rituximab, as raving was and still will be my favourite activity in the world) after almost not going, im so glad i got to have one last opportunity of getting completely off me chops one last time before all this madness (Ryan if you ever see this i am begging you please unblock me u were the love of my life :( lol !).
6 days later on the Thursday night at 19:10 the lovely Eloise took me to my CT scan appointment. I had never had a CT scan before and was a bit apprehensive and after being injected with the dye the nurses failed to tell me i might feel like ive wet myself, so as the warm sensation began around my crotch i did in fact panic thinking i had pissed myself in my juicy tracksuit bottoms on the CT scanner <3. After that slightly traumatizing experience i was told i would hear my results back in 1-2 weeks and if i hadnt heard back in 2 weeks to phone up and ask. Mum treated me and El to a post-CT yo!-sushi and i went home as normal. At 11am the next day i had an incoming call from the Royal wake me up.
The big C diagnosis
If i am completely honest i dont remember a lot of the phone call, i just kind of remember them saying they had looked at my CT scan results and wanted me to come in later that day and bring a family member or a friend. As im in Liverpool for uni i didnt really want to hassle my family with coming up so i went downstairs and asked Freya and we agreed that we would go at 2 after her physio appointment. I also did phone my mum, but i assured her everything was fine and that she didnt need to come up though she later on rang me up and said she was coming which was now, for the best really.
After Freyas physio we went and sat in ambulatory care and were then called in by a doctor and two nurses. Again i cant really remember much of what they said to me but something along the lines of there was a 5x5x7cm mass in my chest, lymphoma and then the big C... cancer. I dont think anything in this world can prepare you for being hit with that word, it just didn't feel real and it still doesn't 2 weeks later if im honest, i just held Freya's hand for dear life. The doctor then stopped explaining and asked if i had any questions, to which i replied with the most appropriate question possible "Am i going to die?" to which he obviously couldn't answer and reassured me he could die leaving the hospital by being hit by a car, so comforting as i was sat with my best mate who had literally been hit by a car 2 months prior! The doctor then left and i had a big cry with a lovely lovely nurse who assured me i was going to be okay and then she left me and Freya to have some time together, where she climbed on the bed and we both just burst out laughing because what the f*ck else are you supposed to do when you're told you have cancer?
It also turned out it was world cancer day!
My mum then arrived and rang me asking what the doctors had said and i wasn't massively keen on telling her over the phone that i had literally just been told i had cancer so i just said "its not great but its not awful" and then she arrived and i told her and there was more tears. I was then told i would have to stay as an inpatient so Freya went home to pack my bags and mum went to do some shopping at asda and i was moved to AMU for the night, which was absolutely f*cking horrendous and we will leave it at that.
I also spoke to a hematologist the next morning who answered more of my questions now i was in a more collected state of mind though i wish i could remember what we talked about, all i remember is asking if i would have hair for my 21st in August and the reply was "probably not". I also had the task of replying to 70+ snap chat messages as i had decided to announce the diagnosis in true fashion, a selfie on my private story. I was then moved to a ward where i would remain for 2 weeks, even though i was convinced i was getting out 4 days later.
I was moved onto ward 3A, my immediate observation was that i was the youngest on this ward by a good 50 years and it remained that way throughout my stay here and if it wasn't for the absolutely incredible nurses, i probably would've developed early onset dementia myself.
I had absolutely 0 sleep in my first night on this ward, thanks to the lovely lady opposite me whos breathing was the single loudest thing i had ever heard, this is also the same lady that was allergic to flushing the toilet and using the correct toilet paper and instead put the hand tissues down the toilet, so every time i went in after her not only did i have to flush away her stinky piss, but also inform the nurses the toilet was blocked! she also asked me to go and buy her a hair brush like i was some personal nurse to her, just because i was the only one able to stand on my own two feet.
After the sleepless night i had began to settle and was looking forward to having a biopsy of my tumor taken on Monday and then being able to leave. However Monday came and there was no biopsy and instead there was the most intense chest pain i have ever endured in my life to the point where i was physically sick. The doctors suspected pericarditis due to the symptoms i was presenting and an echo scan the next morning later confirmed this. Pericarditis is basically when the sac around your heart becomes inflamed and i developed this due to the mass behind my breastbone rubbing on said sac and causing it to become irritated. I was given a double dose of morphine and some anti-inflammatory drugs and this seemed to work a treat.
A couple of days down the line i was given the biopsy date of Friday and a PET-CT scan on the Thursday before. This was also the same day a lovely lady moved onto the ward and told the nurses she had to take her cannula out because "Bernie Sanders told her to". This is also the same lovely lady who zimmer framed right next to my bed at 4am and tried to jump in with me, to my surprise!
The next day i had my PET-CT scan at 9am which included a radioactive injection followed by an hours rest to let it circulate around your body, after which you then go through what looks like a regular CT machine for about 20 minutes, lying as absolutely still as you can. My understanding of this scan is that it looks at glucose metabolism and helps stages the growth of your cancer. At this point my understanding was that the cancer was at stage 1 or 2 due to it all being above my diaphragm from my previous CT scan results.
The day after this was the day of my biopsy, where i woke up absolutely famished to only be told that i was nil by mouth until my biopsy which was at 3pm, brilliant! Anyway the time of my biopsy arrived and i was very incredibly nervous but i was taken down in my bed and changed into a gown ready for the procedure. I was placed onto the bed of the CT scanner and sent through for a regular CT scan to see where my mass was to help the doctor doing my biopsy to know where to take it from as the biopsy was done under CT due to the position of the mass. I was then given the local anesthetic and the needle was placed inside me, i had to be sent through the CT scanner several times to ensure the needle was in the right place to take the biopsy and once the doctor was happy, 3 samples which looked like little white worms were taken and i was rolled back onto my hospital bed where i had to stay flat for the next 2 hours and then bed rest for 4 hours after that. The night of my biopsy was a particularly challenging time for me as one of my close friends who goes by the DJ name DEAKIN was supporting Hybrid Minds that night and after holding onto tickets since November to attend his biggest gig yet i was absolutely devastated i couldn't be there. It was also the fact that i just wanted to have a good time with all my friends under one roof one last time before this cancer sh*t really got real.
The weekend was much easier though as i got some much deserved day release as i liked to call it and got to go with my girls to the Baltic Market and finally enjoy some food that wasn't hospital food and a gin and a biscoff martini (11/10 HIGHLY recommend). I was just so grateful to be able to have a couple hours back in the life of a normal person and not a cancer patient.
The Monday following the weekend was hard as i received the news my biopsy had not even got to the lab yet and i was really hoping to be discharged on Monday as it had been a few days since my biopsy, this however was not the case! I was also left really bitterly disappointed by a friend(??? its really complicated) of mine after promising he would come and see me and bring me some dinner, then forgot he had double booked himself with also planning to go for some drinks with work mates and decided that the compassionate decision was to in fact let the cancer patient down, 20 minutes before he was due to arrive and not turn up, also leaving it too late for any of my friends to get there to visit me. I think what people dont understand until they are there themselves is that when visiting someone in hospital, especially someone with nobody from the same generation or even generation above them on their ward is that having visitors is ALL you have to look forward to. Literally, all i had to look forward to was that hour on the mezzanine just to get me off that ward for a bit, but priorities hey!
Stage 4 high grade, how scary does that sound
On the Thursday following after a pretty uneventful few days i was told that a multidisciplinary meeting was taking place and that i would have a meeting with relevant teams after at 2 so my mum came down. When 2pm arrived we were called into the staff room and given the pretty horrendous news that I had stage 4 high grade non-hodgkin lymphoma and that i would be starting chemotherapy the next day as there was no time to lose with how aggressive the cancer inside me was. This was definitely quite hard for me to take as i had been hoping to harvest my eggs to protect fertility but there was not enough time to do this, so therefore infertility was an added thought whirring through my mind, as well as loosing my hair a lot sooner than i first thought.
Obviously as well being told i had stage 4 cancer as it had spread to the bone marrow in my spine was pretty surreal as well, i just laughed when the doctor told me, it obviously wasn't funny but i literally couldn't bring myself to react differently i was just in so much shock. My mum was obviously devastated too which just made things even harder as i hated seeing her upset and it was all my fault.
I phoned my dad and my grandma and told them and then spoke to my friends and told them the news and they all decided that they would come and see me that evening. And even though i had just been told i had stage 4 cancer they still made me feel like i was the luckiest girl in the world, to have such a big group of my closest friends come to the hospital at such short notice literally meant everything to me and so to Ellie T, Leti, Freya, Harry, Evey, Lydia, Timmo, Chris, Em (especially for the PJ,s and comfy knickers), Amy, Orla, Kat, Caitlin, Jonno, Frankie, Web, Eloise, Molly and Roisin and everyone else who also visited me throughout my time in the Royal, i cannot put into words how grateful i am for you guys just turning up, yet alone every bag of sweets or nuts or subway you brought with you, you guys truly are the best things to ever happen to me and are my strength and power through this time.
Luckily for me, as awful as a stage 4 high grade diagnosis sounds its not actually THAT bad, as lymphoma is a blood cancer it works different to other cancers. The high grade means that the cells are dividing more aggressively which sounds bad but actually means that the cancer should (fingers crossed) respond better to chemo, and i have more chance of being cured! As lymphoma is blood cancer and blood runs around the body it also means that its staging is different to other cancers and a stage 4 diagnosis would not be treated much differently to that of a stage 2 cancer so i am again holding onto some positivism that its all going to be a thing of the past in a year or so, so with that knowledge as i know full well that cancer does not have sh*t on me.
The promised lands of Clatterbridge Cancer Centre
After finally receiving the rough diagnosis from my biopsy result it was finally time to move to Clatterbridge to start my cancer treatment! After reading about Clatterbridge it really did seem like the promised lands after being on ward 3A, as i have heard about the private en-suite rooms and big tellys! I was however quite sad to leave 3A behind, not so much the ward its self but definitely all the lovely staff who deserve the biggest medal (and pay rise but i wont get into that) for keeping me sane during my time there.
Anyway, Clatterbridge definitely lived up to all i have read about it and if i figure out how to post a video of my room on here i will do so. But it is CERTAINLY an upgrade compared to The Royal that is for sure.
But anyways, i started my R-CHOP regime of chemo on Friday and it is now sunday and i am still alive and kicking and have hair, so until i have anything to update further i wish anyone who has made it this far all the best and hope you have a bit better luck than me!
Hugs and kisses,