Two Very Different Weeks of Side Affects - May 29th to June 11th

 May 29th to June 4th

This week, much like the other week's post was very uneventful for me, which is great. I was still having the chemo injections which I have become used to, and I'm still getting them every day around 6pm. The only day since the 27th of May that I haven't had it was the 30th May. I write this on June 11th having just received it in my stomach. 

On Sunday 30th I began noticing my hair coming out, I'm already shaven (bald) headed, so hasn't impacted me too much. But my beard and some parts of my body have just lost all their hair. And each day since the 30th I've begun looking more and more like Gollum, especially as my weight continues to drop off me.

Gollum looking more ripped than me nowadays.

By the 31st May the rash on my legs were definitely improving as well and beginning to fade. Finally I could strut around the hospital room with my thighs out with pride. So far my side affects from the chemo had been going well. I had been told this can change but I was hoping things would remain around this level.

For the first 4 days of June it did remain like this, still continuing with the GCS-F chemo injections. The dressing on the PICC line was changed, this is easy apart from taking the sticking protective off, which is pressed so tightly to your skin, and hair, that it can be difficult. If it wasn't for frankly one of the best inventions ever of this weird little alcohol squirter that completely removes the stickiness and allows it to be peeled off, it would be just me screaming every time. On Friday 4th I had my first visitor since the 25th May as my Mum was allowed to visit me in the ward. There have been infections in the ward and as such it has been locked down, I was one of the only non infected patients so was thankfully allowed a short visit.

June 5th to June 11th

This week was not as easy as the prior two, by a long a way. So far I would say this has arguably been one of, if not the, toughest week of my life. Although I'm sure there are weeks in the not so distant future vying for that coveted top spot.

June 5th started innocently enough, pretty much the same as the 4th, mum was allowed in again, I still didn't have any infections the rest of the ward had, but I did have a high 39C temperature in the afternoon which was incredibly frustrating. As a result of hitting a high temperature I have to have blood cultures taken, this is where they take blood from the PICC line as well as from a vein. They then try and grow bacteria/microbes etc from the bloods to see if I have any infections.

June 6th started badly, I was woken early in the morning for observations and my temperature was 40C. I was in denial about having these temperatures, and adamant it was because my room is hot (it was), I got up and went to the bathroom and immediately collapsed. Then came back into the room and collapsed again. Both collapses, I managed to not hit my head or go completely out of consciousness, more like plummeting to my knees and flailing my arms. I accepted that the nurse was right, she agreed, and helped me back onto the bed and then banned me from leaving it until she said otherwise. It's not clear what is causing the temperatures. The best my temperature was that day was mid 37, by the time I went to bed I had spiked again to 39.3C.

On June 7th my temperatures wasn't as bad, but I was being woken regularly during the night and receiving paracetamol transfusions. Later that morning I had my dressing changed, this time I didn't have the amazing alcohol that helps the skin. This made the dressing change, more time consuming and more painful.  My temperature still during the day was higher than it should  be but not 39/40, as a result I had blood cultures taken again to try and find more results from the bloods taken. Later in the evening I was sent for x-rays, this was just a quick one for my chest where you stand in front of the machine. When I'm going to places like x-rays I have to use a porter and be wheeled there, I opted though to walk to the x-ray with the porter directing me, just to see if my legs could do it. It was the most walking I had done in weeks, my legs were like jelly by the time I had arrived for the x-ray. I actually struggled on the way back, had to get the lift as I couldn't do the stairs. My fitness is dead, in fact as I write this on Friday afternoon my right thigh and left calf feel like I've ran 90 minutes. I think next week, I will volunteer less for walks to procedure rooms.

My current fitness levels.

June 8th could not have started worse. I was still hitting high temperatures and had doctors coming to see me in my room as early as 5am.  The day continued on this positive tangent when I was met by a doctor from the microbiologist team. The blood cultures that I had had taken had developed a bug, something called "staph" (staphylococcus). Apparently this is a bacteria that lives on everyone's skin, but if it gets inside you it can prove very dangerous. He said it has a high mortality rate and that I would need to immediately be put on a specific antibiotic program. The positive though is that he said he had expected to come into my room and see someone ill in specific ways, which I wasn't, that I don't actually look as ill as I clearly am. He commented this has been helped by how fantastic my staff in my ward are, as soon as I have temperature spikes, they put me on antibiotics, which actually include protection against Staph, and had it not been for that I would be in a much worse way. Later that day I had an ultrasound of my jaw to make sure a slight swelling I had was nothing to be concerned about. Before going to bed, at around 10:20pm I was hooked into a 12 hour bag of IV.

June 9th continued in much the same vein (see what I did there?). A very busy night of continuously being up for checks and transfusions. Around 6am I am met by a nurse in red gear, the nurses in hospital are generally in blue, striped means student, and then light blue to dark blue reflects different levels of status. The nurse introduced herself as part of the critical care unit, due to my temp spikes, blood pressures, staph and everything else that has gone on I have found myself on their radar. She was very friendly and said I shouldn't be concerned, which is hard not to when you're being introduced to critical care, and that it was more of a cursory visit to say hello and let me know that they're keeping an eye on me. Later that morning I was temporarily unhooked from the still ongoing IV and sent for a CT x-ray scan. This is where they inform you it will feel like you've wet yourself and you go in and out of a stargate looking device. I thankfully didn't wet myself and kept my pride before being taken back to my room and being put back onto my IV. During the rest of the day the staff worked on getting my temperatures down, and more antibiotics and transfusions. In the afternoon I was told about the CT xray scan results. They had found something on my lungs, something called brown glass as well as some fungal nodes. As a result I was put onto some very bright yellow, almost urine yellow, anti fungal antibiotics as well. I was also booked in for a Broncoscophy for tomorrow, June 10th morning.

Grim

Early on the 10th I was moved from my room (4) and put into a different room temporarily as they still try and get the flu like virus that has kept the ward shut for several weeks under control, my room was going through a deep clean. At around 9am I was taken for the Broncoscophy. This procedure is where a camera is sent down into your lungs to get a look at the source of the infections, some fluid is shot in and then removed. So it was going to a bit of a messy one. The doctor/surgeon and team doing the procedure were incredibly friendly and immediately asked what music I'd like on for it, I went for the Talking Heads. It definitely gave a Netflix drama vibe, as I'm in a gown being laid down while the DUH DUH DUH of Psycho Killer starts playing in the background. I think I went for a good choice.

Not sure I could pull off the outfits the Talking Heads wore.

They were saying how they had once had someone request Acid House and that it was like some bizarre rave. Having now had a Broncoscophy I think Acid House would be my last choice, it does not suit the procedure in my opinion. If I were to go again, The Smiths would be my next choice. The procedure begins with an injection, or in my case a transfusion into my PICC to calm me down, then they use a numbing anesthetic spray to the back of the tongue and throat, which was honestly nasty and weirdly tasted like spicy bananas to me. They wanted to go up my nose and then down my throat into my lungs, using this awful, hot feeling and probably anesthetic gel; was put up my nose with the camera, but I was groaning and in a lot of pain and they ended up having to give up on that route. This left the mouth. I had a mouth guard put in and then the camera and everything was sent down, with me choking, coughing and spluttering the whole time. I could feel people dabbing me as sweat rolled down my face. It's not the best procedure I've ever had in all honesty. Eventually after all my tears and coughs the camera was removed and the team was pleased with the access they had had. I write this Friday evening and haven't heard the results, considering how quick the CT results were, I take this as good news. I was sent back to my room and as I arrived I began noticing something on my tonsils, I didn't think anything of it. By the time lunch had came my tonsils had accumulated a huge blood blister dangling at the bottom, unfortunately it is still there now. It's so large it rests right on the back of my tongue, so basically where you gag. As such I can't speak properly without gagging, when I try and sleep, depending on angle of my head I begin to gag. It is repulsive and makes me want to scream my head off in frustration. I've been told I have to let it drop off, but it's now been 36 hours, it needs to go. 

Receiving oxygen after the Broncoscophy. I've seen better days.

For the rest of my day spent gagging I had the usual transfusions and finally came the time to have my PICC line out. Due to the staph found inside me, it was decided the most likely entry point was the PICC line and as such it had to go. This wasn't too bad a process, there is some stinging as they unfasten the "anchors" holding the PICC in place in and under your skin. Once that was done they pulled and literally like a cheap magic trick, a long rope of plastic was pulled out of my arm, in what sounds like should be painful, but wasn't at all, instead just a very odd feeling of something being pulled out of you. Because I no longer have a PICC, it means cannulas are back in business, these are a lot more temporary, lasting a week max I believe. I had a deep one put in on my left forearm and thats now where I'm getting my transfusions from. My temperatures have begun being reigned in which makes it easier for bed, but due to my throat, it was a night of sheer frustration, coughing and gagging. Something I'm buzzing for tonight.

Cannula in.

PICC line out.

Finally, June 11th. I've been in a decent way apart from the invader living at the end of my tonsils. A few doctors have came and looked and all have told me I'm not allowed to reach in and just yank it even though I am desperate to do so. Apparently it will drop, when it does drop you will hear my cheer of relief across London. After everything I've gone through, this has been one of the biggest annoyances for me and I'd do anything for it to go away. It was mainly a quiet day outside of that, Davidson ward has decided to close to try and tackle their outbreak, as such I have been moved again, this time to DMU ward (Derek Mitchell Unit). I've got a decent room with a big window. As cannulas can only do one transfusion at a time, the first thing that happened in the new room was another cannula, this time my right hand. What seems to be a trend when I have things on my hands, it got messy and gross. I was looking away while it was being put in, and had assumed they were flushing it out as the flush often feels wet, but instead there was blood everywhere again, with the bedding needed changing, and the nurses having to wash my sliders. My hands just seem to have a lot of blood it seems. But the cannula is in, I have two transfusions on the go, left forearm and right hand, and while I've been told tonight will be busy with continuous transfusions, I certainly feel a lot better than the majority of this week, apart from the damned blood blister.

Getting my 2nd Cannula in proved messy.

Hand Cannula!

And as a final piece of good news, my neutrophil count has risen to 0.04. This is tiny, BUT, the team are waiting for some inclination in my neutrophils before they do another bone marrow biopsy on me to check on how everything from round 1 of chemo went. If I'm lucky, maybe my neutrophils will hit 0.08-0.1 by Monday, I'll get a bone marrow biopsy next week, and maybe, just maybe, will be sent home to recover for a couple of weeks. Fingers crossed.

As always the support from everyone has been amazing, just receiving messages has meant so much. And to those going above and beyond joining the Anthony Nolan registers etc and donating blood, it really means so much. The links for all of which can be found; https://linktr.ee/AdamRiley?

Man like Dan

I hope everyone has a great weekend and gets to watch England win against Croatia!