#i finally had a brain mri after waiting for it to get scheduled since JUNE and now i have to wait on results and undergo some other testing | Explore Tumblr Posts and Blogs

justinsdaysinthedark · 5 years

Text

Post #1 - Welcome

Firstly, welcome. Whether you’re family, a friend or even somebody I don’t know - welcome to what will be my journey. I’ll be honest and upfront about what’s going on and I’m not afraid to express my deepest feelings.

Will this blog be everybody’s cup of tea? Absolutely not. I’ll give you the heads up now - this will be boring. This will lead down some dark and negative paths (don’t stress, it’ll be mostly positive!). I do feel however that I need to express myself this way and explore my emotions as they clash with what is going on. Sit back, relax and come with me in what will be some light slightly heavy reading.

Where does one start with such a blog? Let me preface this by saying once all is said and done, I will never complain about anything trivial again. Ever. The past six weeks has been an emotional roller coaster - not only on myself but those close to me. I wouldn’t wish this upon anybody I know and I don’t say that lightly!

Where am I at now? Monash Hospital - Clayton. Over the past six weeks, I’ve spent 26 days in hospital across three different stints. It’s currently 22:49 on Monday 15th July and I’m about to endure what will be the most confronting couple of days I’ve experienced in my life... but let’s roll it back a few weeks and fill you in.

What’s wrong? Where and how did it all it begin? Let’s touch over a few things...

Sunday June 2nd - It all started with an immense eye pain one Sunday afternoon. I’d stayed up late into the night to watch Australia’s first Cricket World Cup clash with Afghanistan. Getting to bed at roughly 3am Sunday morning and waking up normally by 10am, I thought this particular Sunday was going to be a stock standard one. I stayed over at my partner Courtney’s house and we went to watch her nephew play football. 4pm rolled around on Sunday and I thought I was suffering from what I thought was a simple case of eye strain - a deep, immense pain in my left eye. After all, my mum, dad and sister all have glasses so I assumed my time was up!

Courtney booked me an appointment at the optometrist for the following weekend and I kept on in my evening assuming this eye pain would settle with some rest.

Monday June 3rd - Waking up Monday morning, the pain was still there. Had it gotten slightly better? Not at all. I continued on my Monday as normal with an incredibly busy day at work and headed around to Courtney’s for the weekly ‘Monday night roast’ courtesy of her mother. Knowing I had a rostered day off on Tuesday, I knew I could sleep in, relax, take it easy and my eye would eventually get better - surely! It has to!

Tuesday June 4th - With the day off, no alarms set I was woken up at 8:30am with the call I was least expecting. My mum was in tears as she somehow bravely blurted that my grandfather had passed away that morning. Poppy was ill and attempting to recover from a recent hip operation he had after a fall - we all thought he’d fight through it and keep battling but unfortunately his time was up and nanny had called him to join her. A man I was so close with, a fighter had suddenly left us. I was in shock, but raced to pick mum up from work. We made the decision to join my family in Bairnsdale - 3 hours away from where I live. Mum and I shared the driving there, no worries in the world. My eye pain was still there - Worse than it had been, but that was secondary this day. I could still see perfectly normal still assuming it was just eye strain.

Wednesday June 5th - As soon as I woke up, I knew something wasn’t right with my left eye. The pain had slightly subsided however my vision just wasn’t right. I can’t explain what I felt that morning. My left eye was still moving as it should however the vision just wasn’t right. I chose to close my left eyelid and primarily look through my right. It was at this moment I just knew it wasn’t an eye strain - it was something worse.

Mum went down the street that morning and I tagged along. Fortunately, Specsavers (Bairnsdale’s local optometrist) was open and they could squeeze me in for an eye check. I knew I had to rule that out before attending a hospital.

Not to my surprise, my vision was 20/20 out of each eye as it had been for my life. The optometrist suggested if I’m having issues, to head to the local hospital - so that I did.

Rolling on into Bairnsdale Regional Hospital at 2pm on a Wednesday afternoon wasn’t exactly on my schedule when heading down to Bairnsdale originally, but that’s what it had come to. The triage nurse saw me immediately and rushed me through to be seen (within 30 minutes and a waiting room full of patients!) The doctor - who was only in his second year out of uni was quick to assess that I was having issues with my third nerve (something that wouldn’t be mentioned again for a couple of days). In consultation with the Eye and Ear Hospital in Melbourne, it was recommended I leave Bairnsdale immediately and go and present myself to them - a 4 hour drive. With other matters on my mind, I was hesitant to go. My family basically pushed me out the door and it was at that moment that I knew I had to go.

9pm I walk in the entrance to a ridiculously busy waiting room. I present myself to triage and they pull the papers they had from earlier in the day. I thought this may mean I’d get through a bit quicker - boy oh boy I was wrong! Fortunately, State of Origin I was on and that entertained me until 10:30... and from there it was a genuine slog. 11:45pm I walked through the sliding doors and was met by who I can best describe as an overenthusiastic young(ish) Pom who was keen to have a look at me. It was late. I was tired. This bloke was over the top, but my word did he know his stuff! Did that help him diagnose me? No. 2am came around and he sent me home, telling me to expect a call at 9am with plans on what to do next.

Thursday June 6th - Just to his word, a phone call comes in at 9am from the doctor I’d seen only seven hours earlier. He advised I needed a CT scan (at 1pm) and an appointment with a specialist (3pm). The CT scan went well and I assumed I’d be out by 4pm and be able to head to the Sandown Greyhounds for the night as I’d been busy organising a night out over the weeks prior. This all changed when we saw the specialist. She ran her basic tests and ordered an MRI scan ASAP. I got taken over to St. Vincent’s Private Hospital for the scans via an underground tunnel - yes! They exist! My very first MRI scan was done and back to the Eye and Ear Hospital we went. The specialist that I’d seen earlier in the day was rostered on that night in emergency fortunately for me! She got the scan results back and ruled out a stroke and bleeding on my brain pretty early. This was a relief, I suppose. I wasn’t going to die in the short term! It was from here where she advised i’d be required to be admitted to St. Vincent’s Hospital that night for further tests over the next few days. It was at this point where I felt helpless. Disappointed and helpless. I was expecting to have a few tests done and go home and continue my life as per normal. I didn’t want to be admitted to a hospital so far away from home. I didn’t want to wait around for tests. I wanted to be home. In my bed. Some normality at least. This is where my mindset had to change and that it did - pretty quickly.

Dad walked with me over to St. Vincent’s and we entered the emergency department. We were told “you won’t have to wait long... they are already expecting you.” Well, once again, what was I thinking? A city central hospital with no waiting in emergency? In retrospect, I was definitely getting my hopes up.

A solid 3 hour wait finally saw me enter through the doors and be seen to. This is where dad left me - for the first time in this ordeal I was alone. Was I scared? I won’t lie. Yes, yes I was. At 24 years old, no idea what’s wrong with me and alone in a major hospital in the city? I think that’s justified.

How’s the eye at this stage? Terrible. In the prior 24 hours I’d developed double vision and my left eye had significantly moved with no ability to control it - as you can see below.

Friday June 7th - 4am I was finally taken to a ward and had a bed to myself. It was on the 9th floor in the ward that generally deals with major bone breaks and reconstructions/replacements. I was wheeled into a twin-share room with an old guy who had just had his hip replaced. In retrospect, I had such a good room in what turned out to be an incredible hospital. The food was excellent, the nurses went above and beyond to make sure you were comfortable and as happy as you can be and in the end, I had a great view of Melbourne.

10am came by and I saw the first of what felt like 100 doctors that day. They were pretty quick to diagnose me with Third Nerve Palsy in my left eye - something I hadn’t heard since I first presented in Bairnsdale two days prior.

Unfortunately, being a part of the neuro team of doctors - things didn’t happen too quickly. Just my luck too, this upcoming weekend was the Queens Birthday long weekend. I didn’t realise or even think that hospitals go on skeleton staff over the weekends and scans don’t get done very quickly... I wasn’t booked in for a follow up CT and MRI scan until Tuesday...

Monday June 10th - I’m not going to lie. Mentally I was struggling. Presented to a hospital on Thursday night/Friday morning for what was Third Nerve Palsy and they just left me there over the weekend. No follow ups. No nothing. I didn’t realise how much hospitals shut down over weekends - I certainly do now! I was a mess. I felt lost. I didn’t know what was going on or even why for that matter. My eye was doing something it had never done and I couldn’t control it. I felt helpless and lonely.

Courtney was just getting over a serious case of the flu, so I hadn’t seen her in over a week and it was killing me.

I broke down Monday night after I’d calmed down from what was a good win by my Pies. 8pm came around, visitors were gone and I was there by myself. No clear plan about what was wrong with me or how they were going to fix it. I was an emotional mess.

Tuesday June 11th - Finally. The long weekend was over and didn’t I notice the difference. 7am and the hospital was a hive of activity. My CT and MRI scans were booked in for later that day as well as what will turn out to be my first of many lumbar punctures (LP) - something that scared the life out of me. Mentally, 24 hours later I was doing okay. I could see things progressing...but one thing was playing on my mind. Poppy’s funeral was on Friday and I knew within myself I had to be there to say my final goodbye. I let the nurses and doctors know and they seemed to be okay with letting me out on day leave - however logistically that left an issue. 4 hour drive with an 11am funeral wasn’t going to be possible.

Wednesday June 12th - At this stage, my eye hadn’t got any worse. It was just the third nerve affected and otherwise, I was perfectly fine. The results of my scans and LP came back which showed inflammation on my third nerve (which was expected) as well as a high white blood cell and protein count. This lead the doctors to believe it was due to either inflammation or infection. The doctors pretty quickly leant away from infection as I wasn’t presenting with any other signs so they treated me with an incredibly high dosage of a steroid called methylprednisolone to treat the inflammation.

IV drip for the first lot on Wednesday night and 10x 100mg tablets on each Thursday and Friday.

Thursday June 13th - The doctors agreed to let me out Thursday afternoon providing I had no further reactions to the methylprednisolone. Turns out I didn’t, so they fortunately let me out at 3pm to do what I needed to over the following few days. They were happy not to see me again unless of course things progressed and got worse and organised a follow up scan in two months time. At this stage, the diagnosis was Third Nerve Palsy due to inflammation of the nerve that was treated via steroids and may get better over the following weeks or months - or may not get better at all.

Friday June 14th - Sunday June 16th - Whilst Friday was a heavily emotional day saying my final farewell to Poppy, physically I got through it okay and had no further issues. This was my life now - whether I liked it or not. Deep down I had confidence it would get better in time and I’d have to see St. Vincent’s every few weeks to check up and I was okay with that.

Monday June 17th - I wake up Monday morning at home incredibly sick. What was wrong with me? I didn’t sleep during the night and was having hot and cold flushes, dizzy spells, hallucinations, no appetite and had absolutely no idea where I was. It was the flu, without having the flu or feeling sick. It was such a strange feeling. I started to develop an immense pain in my right jaw - incredibly similar to my eye. I started to worry - instantly. I called the doctor who was looking after me at St. Vincent’s and he wasn’t worried about it. He advised me to go to my GP and just get an X-ray to make sure everything is okay.

Deep down, I knew something was wrong but didn’t know what. I suspected the sickness was the come down from such a high dosage of steroids (which was later confirmed) but this jaw pain felt all too similar and I was scared.

Needless to say, I didn’t go to the GP or get an X-ray purely because I didn’t want another round of doctors looking at me, wasting the prior time at St. Vincent’s.

This continued through Tuesday and Wednesday. Exactly the same symptoms... I got further worried.

Thursday June 20th - Mum was on my back about going to my GP. I was resentful, but booked an appointment for 4pm to get checked out. I was still a mess, but better than I had been. Dad took me to my GP appointment and came in with me. By this stage, I couldn’t chew. I’d lost all strength completely in my jaw - both right and left side. My regular doctor took one look at me, checked my files she got from St. Vincent’s that morning and advised that I needed to head back into hospital - be it St. Vincent’s or Monash Hospital Clayton. She recommended Monash Clayton for two reasons; 1. Closer to home & 2. Well renown Neuro doctors.

I was hesitant, but knew I had to. I was more open to going than I had been a fortnight prior and was happy to be in for the long haul. Mentally, I was in a good spot. I knew something more was wrong and it wasn’t just inflammation. Alas, in I went. Straight to Emergency Department at Monash Clayton.

Friday June 21st - To cut a long story short, to get a bed at Monash Clayton was horrible! I spent a few hours in emergency, followed by 5 hours in short stay and eventually 24 hours in a day ward before I was moved onto a general medical ward. Friday was spent in the day ward with Neuro doctors coming back and forth obsessing over my eye and jaw issues.

I’d bloody done it again. Gone into hospital late on a Thursday... this time I knew not much would happen over the weekend and I was prepared for that.

Monday June 24th - As expected, not a whole lot happened over the weekend. I got moved to a general medical ward and that was it.

Monday afternoon finally brought some news once the Neuro team had looked at me properly. I’d lost my third nerve (which we already knew) and my fifth nerve (jaw) was also shot and gone. Great. I couldn’t eat. I was put on what was called a ‘minced and moist diet’ which can only be described as an unknown meat, minced with gravy with a few unknown vegetables on the side (see below). It was horrible. I didn’t have much of an appetite however what I did have was quickly swept away with the sight of this food.

Over the next few days, more CT, MRI, Ultrasounds and LP’s were done. Blood tests twice daily. I was quite frankly getting sick and tired of getting poked, prodded and scanned only for the Neuro doctors to come in once (maybe twice) a day to tell me there’s no real update and they needed to wait for tests to come back.

Thursday 27th June - During the week, things had progressively gotten worse. I’d lost my sixth nerve in my left eye as well as feeling in my chin (just below my mouth) and started to develop quite a large, painful lump underneath my right earlobe.

Doctors were then forced to act fast. They’d suspected I was suffering from either a virus that hadn’t made itself too known and was attacking my nerves or an auto immune disease that was forcing my white blood cells to attack my own nerves, picking them off one by one.

They did some more tests and sent them to both Brisbane and Canberra to be looked at as Monash Clayton or anywhere in Melbourne couldn’t get the results they wanted.

Immediately, they started to treat me for both of these conditions simultaneously. I was having an anti-viral drip 3x/day every 8 hours for the virus as well as what was called IVIG (derived from blood) to fight the auto immune disease and kill off my bad white blood cells.

I was scared. Every day I was getting worse and I suppose I just wanted to know what was wrong with me. I probably felt most for my direct family and Courtney who all had no answers despite all the tests and scans I’d done previously. They were left in the dark - as was I. 22 days it had been since I felt some sort of normality and it was killing me. The fact they had no answers was slowly eating away at me, but I put on a smile and a positive attitude as I always do. They’ll find something soon. They have to. It’ll come back positive for auto-immune, I’ll get treated and away we go back to normality. I was wrong.

Friday July 5th - This treatment cycle went on for the next week or so. The doctors were happy I wasn’t getting worse, my sixth nerve had slightly returned so they were happy to let me go home. 15 days in hospital this spell. It didn’t feel like 15 days though, not to me anyway. I think that’s probably because of the positive mindset and willingness to stay in until they found what was wrong with me. I’d started to develop muscle aches and pains in my left leg but I thought nothing of it - assuming that was just because I’d been in hospital and confined to a 3x3 room for 15 days!

I’d had a full body MRI scan and ultrasound on my leg the day earlier and they saw something around my stomach they wanted to investigate a little bit further. Before they let me out, we agreed to have a follow up MRI in two or three weeks as well as a PET scan within the next week and a bit to investigate my stomach a bit more. I was happy, the doctors were happy and away I went. Back into the world they call life. I was happy.

Monday July 8th - After spending a relaxing weekend between home and Courtney’s, I had an unexpected call at 1pm. It was a woman from Moorabbin Hospital wanting to urgently book me in for a PET scan and was wondering when I was available. She advised she only really had the following day at 2:30pm available for the next three weeks and advised I need to be there. So I took it. I had no bloody idea what a PET scan was, so as any 24 year old would do, I gave it a Google.

“A positron emission tomography (PET) scan is an imaging test that allows your doctor to check for diseases in your body....”

My heart sunk as I read a bit more. PET scans are generally used to pick up cancers. Wait. What? Why do the doctors want to do this so urgently? They were talking over the next week and a half, so why are they doing it now? My gut feeling wasn’t good. I knew something deeper was wrong but I brushed it aside - my condition despite being unconfirmed was in my mind, still auto-immune.

Tuesday July 9th - I’d never had a PET scan before but I did a YouTube search so I knew what to expect. It was like a CT scan pretty much. They inject the radioactive glucose into you, wait an hour so your body can absorb it and have a scan. Simple.

For the first time in this whole ordeal, something went exactly as I expected it. It was an easy process made easier by the wonderful nurses in there. My PET scan went well and I was happy. I was convinced nothing would show but still had that deep feeling in my gut that something wasn’t right.

I had a call that night and booked myself in for a follow up MRI at Monash Clayton for the following day - once again a few weeks earlier than expected. The woman on the phone said the doctors wanted to rush it through and once again, my gut sank. Something just wasn’t right. Why are the doctors pushing through these scans when we’d only discussed 4 days earlier about having them in a few weeks. Whatever. I’ll go. I have to. I just want to know what’s wrong with me!

Thursday July 18th - 16:32. An unknown number calls. This is how I’ve been getting my scans booked. Is it another one? “Is that Justin?” the gentleman on the other end of the line goes.

“It’s Jason from the haematology department at Monash Clayton. I’m not sure if your Neuro doctors have called you yet, but I’ve just had a look at your PET scan from Tuesday with them. We can see significant areas in your stomach, liver, gall bladder and groin that has lit up which we weren’t expecting. It’s your lymphnodes that have reacted with the glucose and are showing us we need to investigate a bit more. We’ll need to get you in for another LP and we’re going to have to do a biopsy of those lymphnodes to get more of an idea. At this stage, we’re looking at lymphoma as a genuine cause of what’s wrong with you...”

I tune out. I’m still processing his first few sentences. What? You mean they’ve found something that isn’t related to the nerves in my eye? Lymphoma? Isn’t that cancer? I might have a type of cancer? But I’m 24? That can’t be right.

I finish the conversation with him and hang up the phone. I was home with mum and the time. She looks at me and asked what the phone call was about. I break down. I cry. I don’t know how to process the news. I’m a mess for a solid 15 minutes. I eventually get strong enough to tell mum. She breaks down as well. It must’ve been incredibly difficult to hear your 24 year old son may have lymphoma. I call dad and let him know....and Courtney. Other than that, I keep it on the downlow. I don’t want to get ahead of myself. What if it is nothing?

Jason calls back later that night. Pretty much says I have an appointment on Monday for another LP and they want to do the biopsy ASAP. He said not to go to ED at Monash Clayton and just to expect a call at any moment between then and Monday that they have a bed for me. When I get the call, I had to go in. I was okay with this. It wasn’t going to happen for a few days!

Sunday July 14th - Court and I went down to dads for the lunch and catch up with his wife and her kids. It was a great day to forget about the reality of life for a few hours. That was until we went to Coles to get stuff for lunch and I had a missed call from a private number. Without listening to the voicemail, I knew what it was. My gut dropped. I told Courtney and we listened to the voicemail together.

“Hi Justin, we’re just letting you know a bed is available and if you could come into the ward ASAP.”

I’m okay with it. I knew it was coming... then a few minutes later I broke down in the middle of Coles. What hit me? I don’t know. Reality I suppose. I didn’t want to go back in. I knew I had to. I knew this trip was going to be about whether or not I have lymphoma - a type of a cancer. I was scared. I grabbed Courtney’s shoulder and just cried. Cried for a solid 5 minutes. I couldn’t control myself. It just hit me.

I thought I’d wait until they called back instead of making that call to enquire further to bide myself an extra hour or two. Half an hour later, they call and I answer. I was able to arrange an extra four hours until I had to be in there. This gave me enough time to get home, pack a bag and mentally prepare myself to head in.

By 5pm that night, I was in a bed with the lumbar puncture booked for the following day at 2:30pm.

Monday July 16th (Today) - I’m not afraid to say I hate LP’s. Being larger than your average 24 year old, they can’t do the blind and require them under CT guidance. It makes the process easier, but it certainly doesn’t feel as pleasant!

I saw the haematology doctor at 11:30 this morning. He was open and honest with me. Which I appreciated. He basically said up front “We’re 90% sure you have lymphoma. All we are waiting on is the biopsy to come back positive and we can start treatment...which will be chemo...”

That’s about all I took out of the conversation. It hit me. Not hard that I’d cry, but the reality hit me hard. Here I am, apart from overweight, I’m a normal otherwise healthy 24 year old. In the space of six weeks, I’ve developed symptoms I don’t wish upon anybody and getting told the doctors are 90% certain I have lymphoma.

I’m not going to lie, it’s not easy to be where I am at the moment. It’s a funny time in my life. I’m being as positive as I can however I know I’m about to face the biggest battle of my life. In a way, I really hope the biopsy does come back positive - just so we finally have something. Confirmation on something and can start treatment pretty much instantly.

With my biopsy scheduled for between 8:30 - 11:30 tomorrow, I’m not going to lie, i’m shitting myself. Sedate me. Put a camera down my mouth to my stomach. Take tissue samples of my lymphnodes. Sounds like a great Tuesday morning to me. For once in my life I think I’d prefer to be at work!

Realistically, I’m expecting the results back from the biopsy in 24-36 hours from tomorrow morning and expect if confirmed to be lymphoma, to begin my chemo treatment late this week.

As I said earlier, it’s going to be the biggest fight of my life...But I’m ready. I’m not prepared to fail, I never have been. I will beat whatever is wrong with me.

If you’ve made it this far, kudos. It’s now 1:32am and I’m starting to get the tired eyes. As I started, I feel as if I had to start this blog to move forward mentally. Whilst this will be my longest entry I’ll have, it certainly won’t be my last. I assure you of that.

Wish my luck for tomorrow!

Juzz xx

6 notes · View notes