After having a lovely chilled weekend with my boys, woke up on Monday with a temperature. Fuck!, just what I needed, and when your body is at it’s lowest after treatment it has nothing to fight back with. It’s called being Neutropenic (low white blood cell count). You deteriorate very rapidly. I had a scheduled appointment already on the Monday but once I called in with my temperature, it was how fast can you get here. Always a challenge from here to central London, it’s at least 90minutes. Here was me thinking lets just get this sorted and I will be back home later that day, wrong! Ended up in hospital until Friday evening. Only had my briefcase and nothing else with me except the clothes on my back. Epic fail on my part!
Arrived there and the same ole story who are you and what are you here for. Ok I feel like shit, what more would you like to know? lol Help! Finally get in and the fun and games begin, blood tests, cultures and antibiotic drip. Doctor comes and says it looks like you have an infection which is causing the high temperature and it’s possible that the infection comes from the PICC line – aka USB. We are going to admit you for a few days and get the infection under control. I just really thought to myself I can’t bloody believe it, after feeling rough all week this was in my mind the week of recovery before heading back in on the 16th of Feb for my next cycle.
The HCA team have just moved from T15 at UCH to the 4th and 5th floor of the Grafton Way Building which is a state of the art facility which specialises is Haematology. It’s actually really awesome place but when you are not feeling good, there is no place like home! This could not be handled at home, for many reasons.
I was been seen to at the Macmillan Cancer Care centre and then they said we are going to take you to your room now. In comes the wheelchair, gosh that’s a weird one for me. The chap takes me down to the tunnels which connect all the hospital sites together. Then we arrive to the 5th floor and yes it is quite impressive. Was I in the mood, no! At that point I was so tired and my temperature was rising. I was probably the first person to stay in room 21 and what a difference from T15. The bonus was the desk area, fully equipped and that is where I spent most of my days, working, otherwise I would go stir crazy! I am so lucky to be able to work remotely and comes in really handy with being in hospital so much.
The next few days were really difficult with antibiotic drips and potassium, sulphates and paracetamol you name it being pumped into me. It was really affecting my morale as I was feeling worse than the week after my treatment when I was at home. They were concerned about my USB and that it was most probably causing the infection so basically poisoning me. This line makes everything so easy as they don’t need to prick you every time they take bloods or give you IV infusions. One of the meds after my treatment is G-CSF which is an injection I have to self-administer daily. G-CSF injections are given to boost your white cells and to release stem cells into the bloodstream.
Tuesday night I woke up with pain in my back and hip area. I had no clue what this was one of the side effects of those injections. This increased in intensity on Wednesday and the pain started to become unbearable, deep inside the bones. I thought it had something to do with my kidneys. I had a visit from 4 of the ward doctors, impressive right. I was like WFT is everything ok lol. They were just updating me on results and my levels. Upon letting them know about the pain I was experiencing they were like, let’s get you something, codeine or morphine? Morphine no thanks, codeine will do nicely. I have this thing relating morphine with end of life, keeping you at peace. Not for me!
On Wednesday morning Denis was so kind to offer to bring some of my things as I had nothing with me. Not that I needed to be fashionable or anything but nice to have clean pants and all that! They have a no visitor policy on these floors but Denis managed to get in to see me, wasn’t easy but he did it! Creative story telling about how he was my brother and he had the right to see me. He was told you have 2 minutes and almost 90 minutes later when he left they caught him on the way out saying he was very naughty! Hilarious! At that point the pain was so intense I could barely walk. So scary.
As the day went on I realised no one had brought me any candy, not that I am not on a barrage of meds already. When I ask my nurse she says oh yes it has been prescribed for morning and then at 6pm. I mean not being funny but it like 3pm and the pain is now. So after kicking up a bit of a fuss and losing my shit, finally the codeine arrives, literally minutes after taking it I was already feeling the effects. What a relief! Then the news comes that my USB is the source of the infection and they will need to flush it with antibiotics and lock it off. Now they will need to insert a canula for bloods and IV, great! I really had a meltdown, nothing seemed to be going my way. No sign of going home in sight and feeling so rubbish.
My head nurse Sarah was due to come and see me later that afternoon and I was way to emotional to see her, so messaged and said today has not been a great day, let’s reschedule. Half an hour later she pops in, saying I know you said no, but I am here too see and apologise for the miscommunication earlier in the day. I could barely hold back the tears, I was not happy at all. In fact I was in the right mind to jack it all in altogether. I’m quite strong normally but this day really broke me. One of the doctors also dropped to say that if they were going to save my USB it would need to be flushed and locked for 12-14 days and I would need to stay in for this. That was just not going to happen. That is just not something I can do. If I have to see another hospital meal that arrives way too early, cold and I barely ever touched or finished. Partly because my taste is still not normal and my appetite either.
The alternative is to remove the USB and take antibiotics for 5 days. Still not an easy decision as that also means getting another inserted. Lovely! But hey, it’s better than getting sepsis and that can be life threatening. I had a FT with Nathan than evening and I am sure he was shocked at how I was feeling, and that all I could see was darkness. I think it’s even harder on him than on me because there is nothing he can do to help, except be my hubby. He is my rock and the best thing that ever happened to me. When you find the one, you know it! They accept you with all the flaws.
The next day, Thursday, was like a huge improvement. No more pain, I felt somewhat human. Still have loads of side effect from the treatment but this infection was getting difficult to control. Sarah was telling me I was almost there and that my blood levels were improving a lot and that as soon as they think I am ready to go home, they will say, but it will most probably be on the weekend. Gutted! They have also agreed to move my next cycle back to the 23rd of Feb and that itself probably was a relief. I was due to come back on the 16th and was thinking how the hell am I going to do that. Later that day my nurse comes in and says time to remove your PICC line. I was like what here now?! She says only takes a few minutes. My stomach turned at the thought. She was right, a few minutes later and I was offline. Didn’t feel anything but could hear it being tugged out. Sorry too graphic ! Painless I promise.
Friday arrived and I was still dreaming of going home but had it in my mind that it would be on the weekend and not sooner. Another day of IV infusions to look forward to lol! Work has literally saved me from going bonkers. My work family are amazing, so supportive and we always have a good giggle. The Pharmacist came to visit with more candy to take home, with options I am not interested in taking, there is a limit. The ward doc came in and quickly announced we are happy that everything is going in the right direction and you can go home, have a good weekend! I’m like wow you serious? Best news ever! Ended delaying my departure as had a zoom meeting that could not be missed lol. Go figure right, only me.
A week to remember that’s for sure. Memorable, Not!
Much love xx