Chemo Days

Think back to a hangover? Now times it by 10. Extreme dry mouth, fatigue, sickness, your body tingles in places you didn’t even know could tingle (especially my fingertips, wow) and the aches and pains are unbelievable to the point I lie on my bed weeping like a puppy because I guess it makes me feel better. However you can feed a hangover with say a good Chinese? A dirty kebab? Nope! Not me, my lovely mum decided to take up smoothie making (green ones) they were revolting but I’ll give it to her they did perk me up, whilst gagging over a vomit bowl.

My first cycle of chemotherapy I had as an inpatient at Jimmy’s (St James Hospital Leeds) which is where I receive my treatment on the Young Adults Cancer Ward, (I now receive my other cycles as an outpatient). Me and Mum (for those of you who don’t know my mum she’s called Janis and she’s the most amazing human being on this planet) stayed four days Friday-Tuesday. I was that unwell my consultant wanted to ‘keep an eye on me’ yet I’d been walking around like an 80 year old for months not even able to walk up stairs without being out of breathe, my grandma had more energy than me and she’s 90! Mum stayed with me the whole time there was NO WAY she was leaving my side bless her. She slept on a settee bed for four nights whilst I was in the electric hospital bed folding myself up and down, I had to amuse myself somehow.

mum and her bed
What a chiller! 

Friday, Connor and Dad had been with us all day and that’s when reality hit when they left this was really happening, I was so overwhelmed, I was sat in Leeds hospital with my mum on a cancer ward. I have cancer? I said to my mum whilst hysterically crying I couldn’t believe it. You never really think of this side of things all the appointments, the chemo, the reality and impact it has on an individual’s life. That’s until it happens to you personally.

We laughed, we cried, we watched crap on TV (well mum called Love Island the Reunion crap, can you believe it?), we got woke up at 1am, 4am and 6am, for blood test, observations, chest x-rays, you name it we had it. I was bruised on every arm and hand every time the nurse came in with the dreaded needle and blood bottles I would cry before she even put it in, what a wimp! Thank god I now have a Picc line, Pepper the Picc I call him! But what an experience it was, in the end I think we called it a mini break as it felt like we were on holiday, a strange holiday.

picc
Pepper the Picc 

Sunday night approached and my heart rate was through the roof again, 150bpm, so I had to have fluids pushed into my quite quickly to bring it down, which thankfully it did, I also spiked a temperature due to a slight chest infection… great! The consultant came into see me and said it was now up in the air if chemo was to go ahead Monday I looked at my mum and broke down crying, I wanted this chemo and I wanted it tomorrow. 

Monday morning I woke up tired as hell and very anxious, I was praying for my heart rate to be down and my temperature to be normal. It was observation time and thank god they were in range, my consultant came in and it was good news (obviously I didn’t know the effects of chemo at this point), it was going ahead. I shouted to my lovely nurse; get me hooked up and get that poison pumping in me!

R-CHOP, would you like mash and carrots with that? (yes please haha) just kidding this is my current chemotherapy regime given to me every 3 weeks:

R- Rituximab

C- Cyclophosphamide

H- Doxorubicin (Hydroxydaunomycin)

O- Vincristine (Oncovin)

P- Prednisolone (Steroids)

It’s a really long process as the first bag ‘Rituximab’ takes a good two hours to go through as you can have a reaction to it, my observations have to be taken every 15 minutes then the rate is turned up if I’m feeling ok. After this the rest of the chemo is pushed through manually by the lovely nurse due to my weight, I’ve always been a skinny one. Little to mine and my mums knowledge we thought the flushes and Rituximab was chemo done so you can imagine our faces when the nurses walked into my room with four HUGE syringes and two more small IV bags, jeez! 4 and a half hours later my first cycle was done all I was thinking was work your magic now chemo!

chemo
More chemo! 

To say we stayed 4 days it actually went surprisingly quick. Finally we was home, I felt great! I could breathe and I was bouncing due to all the steroids I’d had, I could have probably gone to Blue Bar on a wild one until I bit into a coffee Revel and all my jaw began to tingle. ‘What the hell was that’ I shouted to my Mum and Connor in the front room, ‘my jaw, my jaw its tingling’ they both looked at me with fear, is this normal? We don’t know.

The next morning I woke and what I can only explain it was like I’d had 40 straight vodkas, I was pale white, I couldn’t move and all my energy had been taken out of me, I honestly thought this is the end, what is happening to me, I grabbed Connors hands and pleaded to him to give me some energy.

Fatigue is something I’ve really struggled to deal with throughout all my cycles so far as usually I’m like a whippet, always on the go and NEVER still. So to go from being on the go to not being able to even stand and brush my own teeth or dry myself after a shower was a massive shock. My body is working so hard even when I’m relaxing, I need to cut myself some slack sometimes but I’m pretty stubborn.

Then came the back pain I seriously thought I’d had four rounds with AJ, my back felt broken I was crying in pain to my mum when she woke me with breakfast and pills. I remember thinking when will this end? Will I always feel like this? Well the answer is no, I’m on my third cycle of chemo and let me tell you, you get stronger each time. Yes I still get every symptom, my taste buds go for a week and half, my fingers tingle and my Dad rubs my back every night (class A back rub he calls it) but I deal with them so much better now I know what to expect and just keep reminding myself It will be worth it in the end when you have kicked big C in the ass!

 

 

Now the good days definitely out weigh the bad days, when its my good weeks my bad week after chemo is a distant memory. That’s until my bail is up and I’m back hooked up ready to do it all over again.

My diagnosis

Where it all started April 14th 2018,
Grand National day we were going to Leeds with friends for the day, that morning I woke up with an awful cough which made my chest rattle but soon passed as the day went on, all day in Leeds I was shivering, I felt sick and really uncomfortable, however this seemed to pass and I felt back to my normal self. A few weeks later I began again with a terrible dry cough and also abnormal itching all over my body, I couldn’t stop I was like a dog with flees it was horrible I would itch that hard id make myself bleed, a week of this and I couldn’t cope so I booked a doctors appointment, they asked if id had a chest x-ray which I replied no and also no to blood test to which the doctor replied, ‘I think its asthma’, can you just develop asthma like that? I also told the doctor about my itching which he firstly put down to my hair follicles and then proceeded to say it was my hay fever so prescribed me a strong antihistamine (which by the way did nothing).

Taking on the doctors advise I took the inhaler for 4 weeks which didn’t seem to improve my breathing at all and the cough seemed to be getting worse. I went back to the doctors this time an appointment with the nurse as my heart rate was through the roof at 140bpm and I needed a Spirometry test to fully diagnose ‘asthma’, I was going paler and paler the nurse kept asking if I was ok to which I replied ‘no I can’t breathe’, I took my salbutamol inhaler which is suppose to improve your peak flow and breathing but in my case it worsened it, this obviously wasn’t normal. However the nurse said she wasn’t concerned and would give me the preventer inhaler to try as there wouldn’t be a tumour blocking my lung and airway ‘due to my age I was too young’ (little did I know at this point the tumour was nicely growing in my lymphatic system) in my chest.

Night sweats! I literally thought I was going through the change my pyjamas and bed sheets would be drenched to the point I had to get changed, I was beginning to get worse to the point I couldn’t move I went off my food and what was noticeable to other people I was losing weight all the common symptoms of  Lymphoma. I rang my mum I was crying I remember saying to her something is terribly wrong with my body I don’t feel right.

The next day we stomped down to the doctors I told them (yet again all my symptoms) to which they replied well your chest is clear and I don’t think its infection (but yet I was going hot and cold, off my food and had fatigue) it all went silent then all of a sudden my mum demanded a chest x-ray. The next day I had the chest x-ray to which they called me to sit down I was all alone this was when the bad news started. All my left lung was compacted with what they thought was infection I was living off my right lung and 1/4 of my left, no wonder I couldn’t breathe. I got put on clarithromycin antibiotics for 14  days, and was told I had been referred for a urgent CT chest. By Monday at 09:30am the phone rang they wanted me in straight away for the CT, my Mum and Dad had just gone on holiday I was hysterically crying all I wanted was my Mum but I knew I had to go for this scan today. After the scan I had to wait 10 minutes as I had the warm dye (which makes you feel like you have weed yourself), they left me longer than 10minutes I started to panic I knew something wasn’t right I worked in this type of profession and know when you are left and the nurses don’t look at you something is wrong. I got taken into a room where the Med Reg spoke to me and said that abnormalities had shown up on my scan and my lymph nodes were swollen, which they believed could be Tuberculosis but until the could diagnose this more test needed to be carried out. The next day I had a bronchoscopy (a camera down my nose into my lung) the samples the took I had to wait 6 weeks to see if tuberculosis grew on the samples they collected. 6 weeks?! I felt shocking. 09:30am again the next day the phone rang it was the worst week of my life this time it was a CT of my abdomen and pelvis as tuberculosis can spread.

I got put on different antibiotics as all the consultants who looked at my scans believed it was a really bad infection ( my scans had been to 5 lung meetings to which they all said infection) I started to feel better which was unusual, as on my chest x-ray the ‘infection’ hadn’t seem to have gone down. The next step was a lung biopsy and I got admitted to hospital as I felt so unwell again, what was suppose to be one day in hospital changed to a week my bloods were all over the place and they wanted me to wait for my results to see what the next step would be. They changed my antibiotics to IV and also some oral I still felt the same this is when I began to panic as I wasn’t getting better. A doctor also came to me over the weekend and proceeded to take cancer bloods ‘just as precaution’ me Connor and my Mum were crying with fear cancer bloods nobody has ever mentioned this to me? As the days went by I began to forget about the bloods as one cancer marker came back normal so I presumed all the rest would however that wasn’t the case. 1st chemo

Friday 20th of July exactly a week since my lung biopsy the results were back, the nurse sister came to me and said would you like your mum with you for the results? Erm yes and why are you asking me this you haven’t asked me every other time the doctors have come to me, I knew something wasn’t right.

‘’You’ve got cancer’’- (Primary Mediastinal Diffuse Large B Cell Non-Hodgkin’s Lymphoma) I don’t think these are the words you expect/want to hear at the age of 21 or any age for that matter, but that’s exactly what I heard. My whole world came crashing down around me, my legs went to jelly, I felt sick, I was in disbelief. I remember sitting on the hospital bed with the consultant in front of me and my mum to my right everything he was saying wasn’t registering the feeling of heartbreak was taking over my body, this was happening, this was real life. I began to ask myself, why me? Nobody can answer that question because there is no answer to it. The one question I did ask was if I would lose my hair as this for a girl is a big part of my life, the answer was yes and I just remember the pain that went through my body, this was happening and it was happening now, I knew I had a tough journey ahead of me, my biggest fight yet, but the main thing was I could be treated.

I immediately wanted to go home and I could, I wanted just one ‘normal’ weekend just me, Connor and my family before all the appointments and what we had been told became a reality and that’s exactly what we did, we ordered a takeaway, ate at my favourite restaurant and spent quality time together which was so special to me.

Once the weekend was over it didn’t take away the fact that I had cancer and as a family this was a massive weight on our shoulders, we had to deal with this together and came to the realisation it was time to tell close friends and family. How do we even word it? How do we tell those closest to us? I couldn’t tell my close family so I gave that job to my dad I had to figure out how to tell my friends that this was happening and basically my life was going to come to a stand still for quite a few months.

All my friends and family were so understanding I was surrounded by love and support and I was so grateful for that. It made me stronger as a person and have a positive outlook on the situation.