The next morning, Friday 29th March 2019, I was woken up early by nurses and more tests. I also had to go for a CT scan as I was suffering quite badly from headaches which I believed were mainly from the stress and tensions of the whole situation. They started me on the chemo. I was told this chemo shouldn’t make me feel sick but since this treatment was quite rare we would be taking it one step at a time. Again I was quite tired throughout the whole day and my family stayed with me for the whole of the visiting hours. I had so many products and medicines pumped into me I cant even remember what I had. I know it was a lot and the gravity of the situation was slowly sinking in. I was very ill. But I needed to get better.
The doctors and consultants do a ward round on a Friday afternoon so I met most of them and they were all very supportive and encouraging that they were doing everything to get me better.
The next day, Saturday 30th March 2019, I had a nurse called Chris come and put a PICC line in me which would save the nurses and doctors constantly pricking me with needles and save me having cannulas sticking out of my arms. The PICC line was entered through a vein in my right arm and ended up sitting just next to my heart. All my bloods and treatment would travel through this line. The only other times I would have to have a needle would be if they needed to give me a shot in the thigh or tummy.
Chris was really nice and explained everything to me. It seemed a bit daunting at first because he had to use loads of surgical equipment but once the line was in it was fine. There was a bit of bleeding and bruising but Chris said this was normal and would go down over time. I had to use a waterproof armband whilst I showered or bathed to keep the line from getting wet. My skin got slightly dry from where I wasn’t washing it properly. I would shower then go over the area that was covered with a wipe. I had to have this throughout the whole of my treatment. The whole 9 months.
The next set of chemo was given to me and all the drugs were taking their effect. The pain relief for the headaches and all the other drugs being pumped into my body was a bit of a shock. I had never been this ill and my body was just getting used to it all.
Over the weekend, I can’t remember when, I met a nurse called Keeren, she was lovely and knows how to talk to people. She could answer my questions and I felt comfortable speaking to her.
The next day, Sunday 31st March 2019, was mother’s day. I felt so guilty it honestly broke me knowing my mum had to spend this day in hospital. Okay she didn’t have to but of course she chose to. Unfortunately the chemo had started to take effect and I was feeling nausea with it. I was consequently sick and I knew my mum didn’t like the idea of vomiting. She stayed outside whilst Jack helped me get through the sickness. I’ll never forget telling him “I’m gonna be sick” but the sick bowls were right over the other side of the room. Jack must have some sort of superpower because I thought my sick was landing on the floor in front of me but he caught it in the sick bowl. Absolute legend. At the start I could only eat certain foods. I could only have fruit that could be peeled such as oranges, bananas. If I was feeling adventurous it would be mangos and pineapples. I had to be careful with yogurts and make sure they weren’t ones like Yakult’s that had a load of bacteria in them. (The bacteria could make me ill). Things had to be packaged. It didn’t affect me too much to be honest but in my eyes it was another small thing that added to my long list of restrictions. I didn’t like being restricted but I knew it was for the good.
Anyway after this small ordeal I told my family I needed some time to myself. Scott and his family came to visit so I let them stay and chatted to them. It was good to see them and see my nephews. I was able to give Shyloh his birthday present. He really enjoyed it because it was all about space.
They left and Jack came back with Dean and Danielle. Jack had had Chinese and Dean and Danielle had been to the Miller and Carter. I was so jealous of their food. It was good to see them as it lifted my spirits a bit. Dean and Danielle are two amazing people and the four of us click really well. Their daughter Tammi brightens any space she walks/runs/tumbles into. And now they’ve got a second ray of girly sunshine on the way! I’m so excited!
Monday came about and it was chemo for the next three days. The chemo made me sick again. My body was getting used to all the tablets and stuff. I was still having transfusions. And salt tablets. Yuck. Hate salt tablets.
Hannah came round on the Wednesday, my last day if chemo for that week, whilst Laura was there and I was sick in front of her. I didn’t want to be but I don’t think she thought much of it. I felt better after being sick even though I hate it. Other than that it was nice to see her and everyone else who came to see me. My supervisors from work came to see me. It was great knowing how much support I had around me. It definitely helped.
I was then off chemo until the next Monday. My blood count still didn’t stabilise and I had a reactions to the platelets. Dad and I watched the Grand National on the Saturday. We placed bets. Dad’s horse came first. Mine came second. It was a good race and a good day to spend with dad. Mum had a cold so she couldn’t come down over the weekend.
Mum came back on the Monday when I had my next set of chemo. We were trying to watch Back to the Future but for some reason I was in pain. The pain had started in my hip on the Monday morning and got worse over the day. Kerry and Ryan from work visited whilst I was dosed up on oral morph. But that only worked once and then the pain in my leg grew. I found it better to move about rather than lying down but it got to a point where I couldn’t put any weight on my leg so I just laid down. The doctors gave me a shot of morphine and a sedative. I was so out of it. They then put me on a machine where I could press a button and it would give me morphine when I needed it. I liked to call it morphine-on-tap.
That lasted throughout the night. I felt sorry for mum having to deal with it as she stayed really late. Jack came back and had to deal with it throughout the night.
The next morning I was still on the morphine pump. The pain had gone in my leg and it just felt stiff. The pain had moved to my arm and they took me off the morphine and put me on tramadol.
The doctors said the pain was due to the amount of white blood cells I had produced which was caused by the tablet chemo, Atra. The treatment was meant to get my white blood cells back up to its normal count but too many white blood cells can cause that pain. So they took me off of the Atra and put me on another tablet to reduce my white blood cells and regulate it all. It was all a lot of change but it’s all part of the journey. I said to the doctors at the start, before I was diagnosed that I don’t care what they do as long as it gets me better. Put me on whatever treatment, whatever medication for however long. Just get me better. Fix me.
I had a few work colleagues come and visit me a bring me goodies and cheered me up. It was nice to know they hadn’t forgotten about me and that they didnt care what i looked like! (Or at least that’s what I thought!)
The doctors had been talking about getting me home on the Tuesday but that wasn’t going to happen. My body still wasn’t stable.
The next two days went by. I had a few more visitors. I met a lady from a charity called Clicsargent on the Wednesday. I had been referred by Keeran because I was under 24. She was nice as well. She talked about how they can support me as a young adult as I’m only 21.
I think I’m a mature 21 year old compared to other people I know of my age. Most 21 year olds are still at uni or have a job but not a career. Still I have a young mind that thinks of the craziest things so it’s good to have them to talk to.
Then I was back on the chemo on the Thursday. They gave me anti-sickness before and it went okay. The chemo makes my blood counts drop including the platelets so I had to have another transfusion. This time I had quite a bad reaction that lasted through the night.
It just seemed like one thing after another. I couldn’t have a normal day. I was getting constipated from the pain killers so they had to give me laxatives for that which were awful. They made me feel sick too because I had to drink it. The laxatives started working eventually so I was back on track with that and was off the strong painkillers.
I was still off of the chemo tablet, the Atra, which was causing me the pain.
The doctors at the start said I was neutropenic which basically meant I had less neutrophils, which fight off infection, in my blood than usual. This meant I couldn’t go out of the hospital or, in the very early stages of staying in hospital, even walk around the hospital corridors. But it eventually got better and I could start taking walks down to the cafeteria. The corridor leading to my ward from the main part of the hospital was very long. My family gave it a name called “the orange mile” (because it had orange walls and was very long). The first time I walked this I was out of breath. I had been sat in my hospital bed for a few weeks and the furthest I had walked was to my bathroom and back, which was only a few meters from my bed. I became a bit teary. It hit me how unfit I had become in a matter of weeks and how much I would have to do to get back up to the level of fitness I was at before I started to get ill.
I then had a few good days, as good as it can get in hospital. On Wednesday 17th April 2019 the doctor came in to do their daily check and said I was allowed out for a few hours. As soon as he said this I was in tears purely due to how emotional it was to hear that. It meant I could get out of those four walls and, most importantly, I was improving.
So we went to Black Park, me Jack Laura and Mum. We had a nice walk and enjoyed the fresh air. It was the Easter holidays for the schools but it was okay. It was nice to see other people enjoying life in the sun.
I had my chemo again on the Thursday. I was really getting sick of the four walls now and the constant flow of nurses and doctors and other hospital staff coming in and out of my room. I just wanted my bed and peace. At the time, I will admit I wasn’t that annoyed with it because that’s what I had gotten used to however I eventually lost my shit and now I realise that was the reason. I lost it because I was told I would have to move to a bay which I would share with another person. This doesn’t seem too bad but when you’re in hospital and that’s the only thing happening in your life its hard to focus on other things. A few aggravating factors I think were:
1) I hadn’t lost it yet, I hadn’t got angry. I had been upset and confused and emotional and maybe slightly frustrated but not full on “I want to destroy everything in my path” angry.
2) Simply, the doctors said I would be in that room I had first been admitted to until I got out. It was a shock and had got used to my safe space. I didn’t want to share a room with someone else. And I know this sounds bad but she was elderly and I wasn’t in the mood to make friends but I didn’t want to be horrible.
3) Jack had stayed with me every night since I had been admitted so I didn’t know what I was going to do without him because he wouldn’t be able to stay whilst I was sharing with another patient. Maybe I had gotten used to relying on him too much. Maybe I had gotten lazy. Or maybe I just didn’t want to let him go that easily. He was and always had been my first shoulder to lean on when I needed it. He was literally my other half and I didn’t know what I would do without him.
I wouldn’t have mind usually but mentally I just wasn’t ready.
So they moved me out of the room. I went out for a few hours after my chemo and then Jack brought me back to the hospital. I cried all the way there. I cried when he left. I cried halfway through the night when I couldn’t sleep because it was too hot and I was having bad dreams. I cried in the morning knowing I would have to wait for him to come back at 9.
However he did come back and we had the whole day together. We went back to the house and I chilled out pretty much all day. When we came back to the hospital they had moved me back to my own room which had become available during the day. It made me so so happy because Jack could spend the night with me again. And he did. And he did the next night. But the pull out bed was as he described like “sleeping on a bed of nails.” I felt bad for him. Worst thing was he had already had a taste of our bed at home after 3 weeks so to sleep on the pull out did not do him any favours.
On the Sunday, Easter Sunday, I went home and had a shower at home. It was lush. I spent some time with Jack then we went to my parents for Sunday roast even though it was 26° outside. It was a good meal though. I went for a walk as well. My first proper walk I would say. It was great to spend the time with the family, I loved every second of it.
Jack and I had an argument that night. After such a lovely day. It made us both upset. The argument stemmed from a conversation gone bad. I personally think neither of us were in the right mind to have that conversation. He didn’t help and I think he knew he was in the wrong. We spoke later on in the evening. Jack sneaked into my room from the car park and we talked. He went home to sleep and he went to clear his mind a bit. We had already agreed in the day before the argument that he would sleep at home. He had spent quite a few weeks on the hospital pull out bed so his back was written off. He needed the time away from the hospital. I needed some time to myself. Neither of us slept much that night.
I then didn’t have my chemo until the Tuesday because of the bank holiday. I was meant to be going home that Tuesday but that didn’t happen because of my stupid white blood cells. They couldn’t sort themselves out. So they kept me in hospital doing the same stuff waiting for my bloods to stabilise. They reintroduced my ATRA and eventually it worked after another week messing around with doses. My white blood cells behaved themselves and I was able to go home on Thursday 2nd May 2019. Exactly 5 weeks in hospital and 5 weeks too long for my liking. But I know it was all for the good and I’m glad my body and the doctors were able to sort it out.