#4. once again not much here that wasn't stated beforehand but i am Still thinking about your attack!! stopping here though for time! | Explore Tumblr Posts and Blogs

justinsdaysinthedark · 5 years

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Post #2 - Thank You

What an overwhelming 36 hours it's been. An endless amount of phone calls & messages of support got me through what was an agonising day of waiting yesterday. This blog was started to keep my family and close friends informed about my journey but it's grown into so much more.

From the bottom of my heart, thank you to each and every single one of you that took the time to reach out and wish me the best of luck. A simple message of support may not seem like much to you, but when you're in a situation like mine it means so much. Thank you.

Monday night provided the worst sleep I've had in weeks. Keep in mind, i've had some terrible sleeps in that time! Why? It was nerves. Simple as that. I was nervous for the gastroscopy and biopsy. It wasn't the procedure itself but the anaesthetic side to the operation. I haven't been under since I was five and the unknown had my measure. What if they didn't put me under fully? What if I could feel the procedure? What if I woke up early? What if I didn't wake up at all?

In retrospect, I lost sleep over nothing.

With the little sleep I did have, I woke up Tuesday morning earlier than normal. I was expecting the gastroscopy between 8:30am - 11:30am and knew I was booked in for a Radionuclide Ventriculography (RVG) scan of my heart later that afternoon.

Since being in hospital, 9am has been my regular time to get up, shower, brush the chompers - y'know, get ready for the day of sitting in my little 3x3 room and watching the world go past. Tuesday however, I was up and about at 7:30 - showered and ready. I hate feeling dirty, so if my procedure was at 8:30, I'd be ready to go.

Breakfast rolled around at 8:00 and I had to politely decline it as I was required to fast from 12am for the procedure.

This is about the time when my previous blog post took off and messages started coming in for the remainder of the morning. Before I knew it, it was 11am and nobody had been to get me for my procedure yet. I called the nurse and enquired to which I was told to hand tight, it shouldn't be much longer. Whilst she was around, she did my daily observations and it was no surprise to see my heart rate up to 100+BPM (regularly around 65BPM resting) and a slightly higher blood pressure. I guarantee this was due to the nerves.

Lunch comes around at 12:30 and once again had to politely decline. 12 hours fasting thus far - lucky I don't have an appetite still and honestly didn't care! It was around this time the doctor comes around with the results of my Lumbar Puncture. This fortunately came back negative as there was no major changes to the one I had three weeks ago. White blood cells still present with a marginally higher protein count than normal. I once again mentioned about my gastroscopy or there lack of and the doctor assumed I'd already had it. He said he'd follow it up and get back to me.

Mentally, I'm okay. Still incredibly nervous and a little frustrated I prepared myself for a procedure between 8:30 - 11:30 and still nothing. Your messages of support continue to light up my phone, which certainly kept me pre-occupied and made the time fly by.

Finally! 2:43pm and somebody comes to my bed to pick me up. "Justin Smith for a procedure? Let's go." I mentally build myself up as they take me. With my heart beating the quickest it had all day, we get going. Minutes later, we get into quite a dark room with a single scanner to my left and a glass wall. The radiographer, Liv meets me and goes through the basic questions. Name? Date of birth? Address? What are you here for? "A gastroscopy and biopsy" I reply. A few seconds of awkward silence follows so I split it with an "I think..." hoping to relieve the slight tension.

Liv replies with "not quite. We're here to do your Radionuclide Ventriculography scan of your heart."

My heart dropped. I spent the past fifteen minutes mentally preparing to go under and it's not even for the right procedure; I almost feel robbed!

To give you a brief understanding, the RVG scan involves injecting a small amount of radioactive material into your blood stream where they then track it until it passes through the heart, ensuring the heart is healthy and working as it should to a level that it should. Why am I having this scan? Good question. The doctors wanted to get ahead of the game essentially. Providing the biopsy comes back positive for lymphoma, I will need chemotherapy. The level of that chemo will depend, however if I do happen to require a strong dose, it can have negative effects to the heart. This scan is to ensure they have a baseline reading of my heart and ensure it will be able to handle a high dose of chemo.

This scan took 40 minutes from start to finish and before I knew it, I was up in my ward again. By this time, dad had arrived so at least I had somebody to talk to and reassure me when the time comes to get my gastroscopy.

4:00pm and the time finally came. 16 hours of fasting, I was slightly hungry but by this stage, I just wanted to get the procedure over and done with. I was still nervous, but more relieved the time had come. Having dad there for the hour or so beforehand made me feel a lot better about the whole thing.

The operation itself involved a gastroscopy (camera down my throat into my stomach) and if they could see lymphnodes, get a biopsy to test.

Cutting to the chase, was it worth worrying for 16+ hours? Not at all. All I remember is them checking my blood pressure, putting something in my cannula and asking me to count to 10. I got to 12 and next thing I know, I woke up coughing my lungs up in recovery with a nurse next to me. Luckily, the coughing only lasted for about fifteen minutes and that was just a result of irritating my throat.

Apparently, the gastroscopy went well and they were able to get a couple of good tissues from the lymphnodes to biopsy. Additionally, they also took the following photos whilst they were inside - I have no idea what they're of or even if anything is okay, but I thought they were cool!

For the first 45 minutes after the procedure, I felt fine. I was great! I felt incredibly thirsty and hungry but I assume that was simply due to the fact I hadn't eaten. Things from here turned pretty quickly once I had some dinner and a glass of water. I started to go downhill pretty quickly - feeling incredibly fatigued and tired....essentially dopey. It was from here I knew I just needed to have some rest and I'd wake up better in the morning. Needless to say, I was asleep by 9pm and basically slept through the night...except for when the nurses woke me up at 11pm, 12pm. 3am and 5am.

Waking up this morning (Wednesday July 17th), I instantly felt a lot better than I had last night. Admittedly, I had a bit more of a sleep in than I generally would've - it was great. I use the term 'sleep in' lightly though - it's nothing like a sleep in at home! What was the plan of attack for today? Well to be honest I wasn't too sure. A doctor yesterday mentioned briefly about a bone marrow test however the nurses and doctors on had no idea about one and couldn't see one booked in. I hadn't eaten since the night prior however the nurses got me to fast once again whilst they investigated. As a result, breakfast was staring me right in the face and I couldn't even touch my beloved weetbix, milk and sugar!

The clock ticks over to 10:37 and a Young, lanky doctor comes by. "Hi Justin, I'm Alex and I'll be doing your bone marrow procedure today..." Alex went on to explain the procedure, risks and what to expect. As he finished and started to walk away I had one last burning question. "When are we doing it? Later this afternoon?" "Now" Alex replied.

Woah. Wait. What? Hang on two seconds. I'm not prepared for this. You mean now...as in like, once Alex had finished preparing? You betcha....

Now I was under the assumption I'd be getting knocked out as I had done the night before however Alex proceeded to explain they'll put some medication in my cannula that "makes you feel like you've had four or five beers" as well as some local anaesthetic. No point being worried or scared about it - if it's getting done bedside, it couldn't be near as bad as the lumbar puncture, right? Once again, like I have been for the past few weeks I was completely and utterly wrong.

First though, what's this procedure involve? Basically, blood, white blood cells and platelets are produced in your bone marrow. This can be accessed via key areas of your body depending on your age...for me it was my hipbone - left side to be exact. The aim of the procedure is to get these fresh samples of blood, white blood cells and platelets as well as get a sample of my bone marrow - generally one small sample of the bone.

Alex got me curled up in the fetal position, lying on my right and basically began straight away. A few local anaesthetic needles numbed the surface before he inserted a needle in to collect the blood samples. This part was similar to a lumbar puncture, but I couldn't feel as much internally.

Alex then stated he was starting the bone marrow collection, which was without fail the worst part of this whole experience so far. He used the large needle with a blue handle, which can be seen below.

Alex hit the bone and advised me the next part was only going to tickle a little bit. What's he do? He starts to screw into my bone. Whilst I couldn't see, it felt very similar to uncorking a bottle of wine. Whilst he went in no deeper than 1mm, christ it hurt. The worst part was yet to come. Much like the pressure behind uncorking a bottle of wine, this happened too. Alex yanked the sample out and the pressure and pain was immense! Done. It's all done. Thank goodness. Then Alex said the words I didn't want to hear next. "Y'know what Justin? We want to make sure we only have to do this once, so let's get another sample, eh?"

Oh my lord. Are you kidding me? Whatever. Lets do it. I want to get it over and done with. I don't even think I replied, just mumbled something along the lines of whatever. And thus, the process happens again. I've attached photos of the two samples below, which I thought were pretty cool!

I must admit, Alex was incredible during the procedure. I asked at the start to keep me informed throughout the whole process. I'm quite an inquisitive character when things are happening that I don't know what the process is and this was no different. Alex not only kept me informed, he did as much as he could to keep me as comfortable as I could be during such a procedure. One thing I was incredibly surprised at was how much blood was on his hands!

Not much happened throughout the rest of today to be honest. Courtney, dad and mum came to visit but that was it. The doctors advised they are expecting the result of the biopsy tomorrow afternoon (hopefully) however they said it could take anywhere up to 72 hours from the procedure - which puts it at Friday night or Monday. Where does that put me? Same boat as I have been throughout this entire process - just waiting for answers.

I was advised that the results could come back either negative or inconclusive. Whilst this wouldn't be ideal, it's unfortunately just going to be another roadblock in this venture. In preparation the results don't come back the way we probably expect the, too, I'm booked in for an ultrasound of my gall bladder tomorrow. That will be their next avenue to answers. I suspect this is because my PET scan showed up significant areas in my gall bladder and I suppose that's not exactly a vital cog of the human body...so I suspect they'll just remove it, cut it open and see what's inside. But that's nowhere near a medical analysis of what's going to happen.

Before I finish for tonight, I'll leave you with how I am mentally. How am I going despite all this? Y'know what? I'm actually the opposite to what you probably think I am. I'm in the best mental state I have been over the past six weeks. Why? I think it's because we're close to (hopefully) getting an answer or at least following a more solid path to answers.

I end tonight with a final thank you. Thank you for all the messages and endless love. It's helping - trust me, it is.

Juzz xx

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