The build up to Chemo - May 13th - 16th

I write this on Sunday evening, as I should be beginning chemotherapy Monday May 17th. It's been strange being back in hospital as an inpatient, oddly enough I am in Waddington Ward, which was the name of the ward I was in back in Lincoln all those years back. I'll take that as a good sign? As a heads up, Sunday morning in this post is a bit gross so, probably finish your croissant and tea first.

It has already been an eventful few days, I seem to continuously be spiking with temperatures above 39C, pretty much from the moment the door shut behind me and I was unpacked into my new life. This makes things complicated as I can't have certain transfusions if my temperature is that high, and is also linked to my blood pressure which is continuously very low in the 80 range, needs to ideally be above 90 minimum really.

Thursday morning began pretty rough, I felt a bit loopy and confused that morning and slowly began to get into a lot of pain, until finally I was in the worst pain I think I've ever been in. I was supposed to have a PICC line put in, but this wasn't possible due to what was happening. Basically my chest/ribcage was just in bits. I have had a lot of scans; ECG, MRI (I think), magnets multiple times all over my chest which have difficulty staying in place due to my werewolf chest, thankfully my heart is still there and doing its thing. Good to see at least some of my body is behaving. The pain it is believed, is basically the leukemia cells spreading across me, and because your sternum and rib cage are thinner bones, it means you can feel it more. And damn are they right, I could barely speak and was fairly delirious, it would take me a minute to finish basic answer as my voice was very whispery and slow in order to try and lower the pain and get any kind of words out. I sounded like a pervert breathing down the phone. The pain was also making things difficult to focus, I would be asked my name and I'd respond with my email address and things. I can't remember a huge amount of the day, but was put onto a different batch of pain relief eventually which includes morphine, its very moreish. On top of this I had some x-rays which I assume went alright, as noone has told me otherwise. I was able to see my parents in the evening when I was recovering which definitely helped. Its odd how the pain slowly comes back though, when my parents arrived I was able to speak coherently and was in an alright way, but by the time they left I was doubled over and doing my whispering pervert voice.

Friday had similar issues but the pain was lower than Thursday by far. As to be expected during the nights, just like last time, I am being woken at 2, 4, 6, 7, 8ish for observations which can be confusing. Still a lot of temperature spikes and low blood pressures which were sending me all over the place. Which on top of the countless antibiotic transfusions and tablets I am on, is probably a strange mix.

The non-stop fever spikes I am in and out of, can make it hard to remember everything from the first few days, especially in order. The team began getting a bit on top of my temperatures on Saturday and I was able as a result to have a blood transfusion, which felt a bittersweet moment, good because they've been trying to get me to have one since I arrived on Wednesday, but disappointing as this is the first one in 6 years. I think that is the moment it really kicked in for me that this is happening, I'm back, and for something that will be even tougher. Later that afternoon my mum was allowed to come in to the hospital and we watched the FA Cup final together, my dad was turned away, an understandable decision ;). 

Today, Sunday has been a very weird day. For the most part, non eventful and fine. But a very eventful morning. If you are a bit squeamish this might be difficult to read, buuuut, I thought I would put it in anyway. But before I get to that, as you can imagine being woken up for observations is tiring and you start losing track of day and reality. At 2 this morning, I think I was woken up too fast so my body was awake but my mind was still in dream. I was aware of the nurse speaking to me, but I was like "no no, the numbers, they're all wrong. They're wrong because they can't be divided", something along those lines. Which meant I needed more tests to make sure I was getting enough oxygen to my brain, I assume my teachers at school had similar requests about me. I was fine, but I think just having some bizarre anxiety dream. I certainly wasn't challenging professional NHS staff on their calculations.

I eventually fell back asleep, at 6am for the observations things got messy. So turn away if you want.      The previous day my cannula in my arm had to be removed, so a new one was put into my hand. I do the usual gifting of my arm for the blood pressure test, and keep my hand under the sheets on my leg while the pressure is being taken higher up my arm. I remember thinking fuck that's tight and a lot of pressure and clenching and unclenching my hand under the covers until it finished.  My blood pressure numbers are fine, my temperature is fine, so the staff leaves and I'm on my phone with my right hand, and I'm thinking what on earth is that grim smell? As I'm looking around and I see a very small spot of blood on bed sheets. And I was like huh where did that come from. So I pulled the covers down. And it was like I'd performed a satanic ritual, blood was everywhere; all over my thighs, the bed sheets and my PJ shorts were dripping. First thing I did was check my privates, I clearly have a fear about them being cut, and no they were still perfect as ever. Then I realised it was from my hand and the needle was out. I think the blood pressure pushed my cannula out of my hand, and was just spurting my blood out while I wasn't paying attention and because my hand was under covers neither me nor the staff noticed. I also couldn't feel it because its body temperature. If it was cold water you realise. But if its your blood, which is your temperature, you don't. So I did what all normal people do in that situation, take a photo, see below. And then press the buzzer on the nurse request, he comes back in and I just state that I'm not sure what I had done. That was then resolved and I showered.

Thats not pee on my shorts...

Line has popped out and covered the hand, you can see why I was not initially aware due to the covering.

 I still need antibiotic transfusions though and now I have no cannular, and space is running out on my left arm, my arm was then shaved by a nurse who certainly enjoyed it too much. The vein found was very deep in my forearm, took a while for the needle to go all the way down to it, it's the Titanic trench of veins. I find it hard to look at my left arm, its odd, I have a manly hairy right arm, and some bizarre hairless limb on my left, it makes me feel very naked and vulnerable.

I genuinely spent a few minutes trying to work out how to get both arms in for a comparison before I realised how stupid I was being.

I'm finishing this off around 7pm Sunday, I've yet again spiked my temperature, but this time to 38.6. Hopefully this gets reigned in, as this coming week will be like no other I expect. As long as my spiking temperature or any other occurances happen, I should be on proper chemotherapy by the end of tomorrow (Monday). The support has been exceptional and I really have felt it, I don't know what posts will be like next week. My intention is to get one out Saturday morning, but it depends on how things are, no one wants to read a 10,000 word dissertation.

Please do continue to join Anthony Nolan register, its a phenomenal organisation, its simple and painless and the potentially outcomes from it are lifesaving for a lot of people; https://www.anthonynolan.org/help-save-a-life/join-stem-cell-register

Shout out to Gio! And thankyou to all who already have, and are doing this!

For those who aren't in the under 30s section, you also have the option of; the NHS British Bone Marrow Registry. Joining the register - British Bone Marrow Registry - NHS Blood and Transplant (https://www.bbmr.co.uk/)) This is for under 40s. Potential donors are identified from their DNA extracted from spit and if matched, stem cells are extracted from a blood donation (no operation/anaesthetic etc). There really is nothing to worry about. 

And finally continue to donate blood, platelets etc, there are no age limits on this. One day I hope I will also be able to donate somehow. Thankyou for your messages and phone calls.

For those who made it down this far, here's my mum showing her true colours.

Yeah of course it was a typo mum, sure, sure.