I then spent the next few days at home. The Friday I spent mostly in bed except from getting up to eat and go to the toilet. I wasn’t feeling ill I had just really missed my bed. On the Sunday mum and dad did a BBQ. It really wasn’t BBQ weather so we stayed indoors and again I enjoyed the company and loved every minute of it.
We stayed at mum and dads for the night then came back home. Jack and I went to Sainsbury’s to get baking stuff as I wanted to bake during the week to pass the time.
And then it just went on from there. I was in twice a week for the next four weeks having chemo before my 2nd cycle began.
During this time I started getting annoyed of people saying “I’m sorry this has happened to you” or “you poor thing” all pessimistic things. I know they were just trying to consolidate me but I was over that part. I guess you could even say I had started getting used to it.
I decided to post about my diagnosis on Facebook and Instagram because my team from work were taking part in The Nuts Challenge to raise money for Leukaemia UK and The Eden Ward at Wexham Park Hospital where I received part of my treatment. So I shared their just giving page and my diagnosis.
I got a lot of responses. A few people messaged me that I hadn’t heard from in ages which was nice. People shared my post and the message spread.
I was still off of work which got to me because I missed my job and socialising with my colleagues. I visited them a few times before going back into hospital. It was nice to see their faces and have some normality in my life.
Monday 3rd June 2019.
I went back in for my second cycle of chemo. I spent a week in hospital and it was the worst week ever. I got there the first day and I had my treatment on the day unit. The staff there were so slow and, bearing in mind I had had treatment there for the past few weeks, they still got my bloods wrong. This meant it delayed me having chemo. One of the nurses came and spoke to me saying they had forgotten to say on the blood form that magnesium needed checking. So that took another 2 hours. At 6pm I started my chemotherapy. I was in at 11am that day. I’ve come to notice there is a real lack in communication on the ward and the day unit. A bit more communication and effort would make the ward and unit a lovely place. But I’ve had all my treatment there so far so I know that’s not going to happen.
I then got moved to the ward where I would stay for the next 5 days for the rest of my treatment. So I didn’t know this until now that chemotherapy had to have a 24hour gap in-between each session. I didn’t know this. So I was waiting all day in my hospital bed with these stupid stockings on (to help with blood circulation and prevent clotting. I could have had an injection to prevent this but I hate injections) for my next round of chemotherapy. I was asking the nurses all day and it’s not until 3/4 pm that one of the nurses tells us I can’t have it until 6pm +/- an hour because of the 24hour rule. I was not happy. So I have my chemo late again. The next day is Wednesday so I ask the nurses if I could have day leave because it wouldn’t be until the evening that I would have chemo. Nurses and doctors said yes so my mum, Jodi and I escaped and went for a pub lunch. My bloods were fine I was feeling fine. It was all good. Plus it was a nice break from the two messed up days I’d had in hospital so far. Wednesday comes around. There’s a shortage of staff (of course this happens when I’m in). The nurses work on 12 hour shifts and do either day shift or night shift. They had no chemotherapy trained nurses on during the day so I was told I would have my chemo slightly later when the chemo nurses come in for the night shift (it didn’t bother me too much but still an inconvenience). My chemotherapy came and is supposed to be check by the delivery guy and the nurse in charge. Obviously the nurse in charge is not a chemo nurse so he didn’t think to check the chemo for its expiry times. Most chemo has a shelf life of a few hours. So it’s made the day of or the day before the patient receives it.
The night nurses come in and my pump is already set up by the day nurses. I’m connected and ready for my chemo. But guess what… something else goes wrong! (I know! What a shocker.)
The chemo nurse on duty, I won’t name names but she’s a lovely Irish nurse (one of the two lovely Irish nurses), came into my room at about 7pm I think and said that the chemo expired two hours ago. They couldn’t give it to me because they couldn’t get hold of the supplier to see if it was okay to give it two hours past its expiry. They spoke to my consultant on the phone and she had advised I make a complaint. Now with having leukaemia and receiving treatment and everything else that was going on I didn’t make a complaint. Probably should have because it may have fixed the communication issue but I didn’t because it was another thing I would have to deal with and I could not be bothered.
At this point I think I laughed when I found out because I had already had enough. I was going to go grey if I kept getting frustrated. So I laughed at their incompetence. Moving swiftly on. I then had chemo on the Thursday, Friday and had to stay in an extra day on the Saturday to finish my chemo. Since I’d missed a day I could have the chemo earlier because it was past the 24 hours. During this hospital stay I had an allergic reaction to one of the dressings (another new thing that wouldn’t have happened before being diagnosed. I never had any problems with my skin before). So I had a different dressing put on which a few weeks later my body would reject as well. I’ll explain more when we get to that.
I then went home with more meds and carried on with chemo twice a week for the next 3 weeks in the day unit. What a joy.
My L Journey 