So it was the big day, I was so nervous I felt sick to the bottom of my stomach. Ryan drove me to the hospital and there was nowhere for him to park so I had to hop out and had no other choice but to go straight in. On entering the ward they took my blood pressure which was sky high but I knew why and my temperature which was fine. They asked me to go down to room number 4 and there would be another member of staff in there. I walked down and stood in the doorway like a lost sheep. A nurse looked up and said ‘take a seat’ I looked around there was only one seat left so I headed over. The seats were occupied by six men and one woman. The nurse asked my name as they were looking through a big pile of notes. The nurse looked over to me when my file wasn’t there and checked my name again. I said I’ve not been here before! The nurse dropped everything in her hands came over and said I’m so sorry I didn’t know you hadn’t been before and then announced to the whole room it was my first time, to which everyone smiled, said hello, nodded and I’m sure someone gave a little round of applause. Very unexpected but could have been worse.
Before your first infusion they take a blood sample and test your urine, my urine came back as showing signs of infection, which meant no infusion, it seemed mild on the dipstick so the nurse said let’s wait for your bloods to come back and see what your white blood cell levels are if they are all ok we can still go ahead.
2 hours of me anxiously waiting they came back and I was given the go ahead. I watched as the nurse began to draw up the infusion and attach the giving set (the connection into my arm), I’d seen this and done it myself thousands of times but this was so different, I was so nervous of what this liquid would do. I was thinking I really don’t want these drugs to be inserted into me, what if my body rejects it? What if it doesn’t agree with me? What if I vomit, everyone sits in a semi circle they would all see me, oh god I thought I now need a wee as she’s attaching it to my arm. Drip, drip, drip, too late, that was it, it was going in, I sat back in the chair and just stared at the floor. After about 5-10 mins I got a whooshing feeling all through my body, my breathing slowed right down and I started to feel sleepy, soooo sleepy, there was a pillow on each table and now I know why. I folded it in half and popped my head on it… Gone!…
I was startled by the nurse tapping me on the arm and could hear this horrendous beeping sound going off. She said “sorry to wake you you’ve bent your arm slightly and it’s stopped the infusion” I quickly sat up and apologised. I didn’t nod back off but it was all I could think about. After your first infusion they keep you for around 2 hours to monitor you and your blood pressure. Mine had kept dropping throughout the infusion but was slowly coming back up and they were happy. They gave me the go ahead for heading home. I text Ryan and put on my coat.
I left the ward and walked over to the lift. Instantly out of nowhere I felt this feeling of euphoria I felt fantastic, giddy, happy, no longer tired to the point where tired wasn’t even in my vocabulary. I noticed I was smiling under my face mask. I knew I had a little wait and as I was walking out of the main entrance I noticed the coffee shop was open, I thought do you know what, I’m going to get a hot chocolate, as I was looking at the menu board, it said today’s special Salted Caramel Hot Chocolate, WINNER!!!! I’ll have one of those please. I sat outside on the wall sipping my hot chocolate kicking my legs like a giddy school girl feeling great. The drive home was about half an hour, but felt a lot longer due to Ryan’s road rage. I decided to have a nap once we got back just to be on the safe side, even though I could have just gone to the pub. That evening I felt back to normal the high had worn off.
Until the next day…. I woke up like a new person, similar to the person in the lift leaving hospital, I wanted to go out, spend money, go shopping, do anything, I’d have got on a plane if I could. If this is how it made you feel well it wasn’t bad at all.
That feeling lasted about 3 days which was lovely but then the tiredness kicked in, I put it down to my body getting used to the new drug it had been given. I think about a week passed and I still wasn’t feeling great and I started to think about the future and the plans we’d made and how it wasn’t just about me, I’d only been thinking about myself up to now.
I loved Ryan and I knew he loved me. But when he met me those few years ago, happy, acting silly with the dolly mixtures and care free, I wasn’t that person anymore or at least I didn’t feel like it. I started to think that as I wasn’t the same person anymore it wasn’t fair on him, he hadn’t signed up for any of this. I didn’t want his life to become something he didn’t want, to have to look after me, after all it’s never going to go away it’s only ever going to get worse. I didn’t want to be the one to do that to him and it was all I could think about. Over the next couple of days I started to distance myself from him until one day he said to me, “what is the matter, what’s wrong?” So I said what I honestly thought was the right thing to say and do, that I thought we shouldn’t be together anymore and maybe he should go and stay somewhere else to give us space, deep down knowing it wasn’t space that I needed. It was one of the worst things I had ever done to hurt someone like that, to see the look on his face but at the back of my mind I thought I was doing the right thing. I never told him my true reasons I’d said it just wasn’t working, I was thinking of all the silly things we and I’m sure hundreds of others fall out about everyday and were using those things as excuses. The dreaded it’s not you it’s me but I meant it more than he knew. He reluctantly went on a Monday morning and I don’t think I’ve ever cried so much.
I couldn’t sleep I’d wake up having what felt like heart palpitations, I was upset day and night for the next 4 days. On the Friday morning I’d woke at 3am and was thinking about the unanswered questions he’d been asking me everyday, what had caused me to make this decision? and did I still love him? I sat up in bed at 3am and wrote a letter to him crying the whole time. I’m talking tear stains on the stationary and everything. That afternoon I asked him to come over and gave him the letter hoping he would read it and accept it and that would be that, I’d written the same things I’d been telling myself were the right reasons to do this but not the whole truth. But he read it, put it down and said “I’m not having that”, I couldn’t pull the wool over his eyes. We talked but I stuck to my side of the story. Again he left and again I cried.
Later that afternoon I picked my son up from school, walking into the kitchen I started to feel like I was having some sort of breakdown, right there and then, who even was I? Why was I treating Ryan like that? We’d been so happy, surely if he wasn’t happy he would have left before I asked. I started to think if it was the right decision and if it was then why was I so upset about it, I’d been the one calling all the shots, I’d not had it done to me. Then I just thought I can’t do this anymore and text him asking if he could come back over. I was sat on the bed when he got back and when he came up I cried and it took everything I had to say what I did to him, I’ve always thought of myself as being able to hide my feelings and not let anyone in but I’d just given up, I said “I don’t think I’m coping very well with all this” he knew what I meant and gave me a hug, a big hug. I told him my real reasons for doing what I did and he said what I knew he would say all along that it’s absolutely ridiculous, he doesn’t see things like that he never would and I needed to stop it.
I apologised for how I treated him and I said sorry many times but I will take this opportunity to apologise again, I do to some degree still think that he deserves better and it’s such a shame that this condition came along and threw a spanner through our nice little workshop window, but even though the window cracked and broke, it can be patched up and some would even say it’s nearly as good as new.
Ryan I love you and I am sorry xxx
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