Subeh
john rebelrp
- Joined
- Apr 26, 2016
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G'day,
I had the idea to make this thread when I came back, I just wasn't all too sure on how to structure it truth be told. I get asked plenty of questions, not everyone here knows that I had a fight with cancer, and I thought that I may as well make an educational and motivational piece out of it. That being said;
DISCLAIMER: This is NOT a grab at sympathy. I write this purely as an educational and motivational piece.
Now that's said and done, we'll start with my story specifically; how it went for me. It differs from person to person obviously, but a good start would be to go over my story.
Around 3-4 years ago I was showing some very early signs of testicular cancer (I won't go into detail; you're free to research that yourself if you want) and so I went to see a general practitioner. I had a talk with him, he had a look, and essentially told me it was nothing to worry about -- that's the first misdiagnosis. A year or so later, maybe a little less, I was having far more difficulties and more symptoms were showing; I was and am heavily against googling these things, so naturally I wanted a professional opinion. I went to him again. This time? He didn't even check, he just told me that he was, to quote; "Happy with the last results." and that he "Didn't need to check again." -- second misdiagnosis.
Of course, it being a Doctor -- someone we'd been going to for about a decade now, too -- I trusted his opinion.
Around early 2019 (the exact gaps are a little lost to me, especially at this point) I begun getting pains above my left eye; pressurised pains, localised to one spot, which extended down to my eye. A day or two later, I begun seeing an odd distortion in that eye's vision, which caused whatever I was looking at to bow inwards. Naturally this wasn't right so I went to an optometrist, given the pain had more or less subsided I thought this was just a vision problem. He spotted something "small, white and round" in the eye and, looking back at it now, he looked petrified -- I think he knew what it was, he just wanted me to confirm it with someone more qualified than him.
That's around when everything kicked off. I went to the hospital and saw their best ophthalmologist, who -- after a few tests, including an ultra-sound just to be safe -- told me it was a tumour. I went into some pretty blank shock and mu Mum and I were taken off into a separate room to chill out. I was told that I'd be coming in a few days after that for a CT and PET scan, which I did.
About an hour after I arrived home from the hospital, I got a phone call regarding the status of everything; I was told that it had originated as testicular cancer, had spread up a ludicrous amount of lymph nodes throughout my body (including ones that went beside my heart), went to both lungs which created clusters of tumours, my left eye and my brain in two spots (any later and it would have been three spots). The proteins they measured in my bloodworks (A.K.A 'Cancer Markers' as they described them to me) were 171,000, and they were supposed to be 5 -- so that's obviously not good. This all put me at Stage 4.
This is where things got a little fast. Doctors were naturally wanting to handle this very quickly, so I was offered to either go into hospital the following day, or the following Monday (this was a thursday); I chose the Monday, so I could get myself sorted out.
Monday rolled around and I went in. Tuesday I had Doctors in my room explaining the sheer severity of my condition and what the plan was; tomorrow I was going in to have an operation to remove the source (you can guess what that was), and the day following I was going to have a portacath inserted into my chest to allow for chemotherapy to enter my system far easier, given they set them up to run straight into your jugular (I still have the portacath in my chest to this day; it takes a long time to get them out, because it's non-urgent). He also told me what protocol of chemotherapy I was going to be following; BEP (Bleomycin, etoposide and cisplatin). The Doctors described this to me as being an extremely hard-hitting protocol and that only young and healthy patients could put up with it.
So, all that happened. The following week I started my first round of chemotherapy (I was scheduled for 4cycles; 1 cycle = 4 weeks.) and that went fine; I'll explain more about how chemotherapy felt in another tab. I was hospitalised for my first round of chemotherapy and after that I went home, having spent around 12 days in hospital at that point.
From there it really was just a big waiting game. Every third week I was going in for 5 days and each for 5 hours to receive the chemotherapy in an outpatients chemotherapy ward, and all I could do was sit and wait to see the results.
Thankfully, I was kicking it in the fucking ass.
I don't recall the exact figures, but removing the source tumours and whacking me with the hardest chemotherapy they had available for this kind of beat the ever living shit out of the cancer; so it was a strong start, an extremely strong start (so good the Doctors themselves actually told me they hadn't seen such a good response before). From there the results only got better and better; by the end of the 4 cycles, my cancer markers had reached around 10ish from 171,000, and they were about ready to stop chemotherapy and enter me into the monitoring stage. I narrowly dodged requiring radiation on my brain, which would have had some serious side effects.
Over a year later and I'm still cancer free (hopefully; I have more tests next month). I'm going in for CT scans every 3 months and MRI's every 6, the same ophthalmologist is looking after my eyes, and I'll hopefully get this damn portacath out of my chest in a few months so I can start working out properly again.
A little side-note; I paid for none of this. Not only did they save my life, I paid for zero of it (aside from parking, and we got 50% off on that) and their service was, is, incredible -- just an ode to the Australian public system for you there. Fuck the private system.
Of course, it being a Doctor -- someone we'd been going to for about a decade now, too -- I trusted his opinion.
Around early 2019 (the exact gaps are a little lost to me, especially at this point) I begun getting pains above my left eye; pressurised pains, localised to one spot, which extended down to my eye. A day or two later, I begun seeing an odd distortion in that eye's vision, which caused whatever I was looking at to bow inwards. Naturally this wasn't right so I went to an optometrist, given the pain had more or less subsided I thought this was just a vision problem. He spotted something "small, white and round" in the eye and, looking back at it now, he looked petrified -- I think he knew what it was, he just wanted me to confirm it with someone more qualified than him.
That's around when everything kicked off. I went to the hospital and saw their best ophthalmologist, who -- after a few tests, including an ultra-sound just to be safe -- told me it was a tumour. I went into some pretty blank shock and mu Mum and I were taken off into a separate room to chill out. I was told that I'd be coming in a few days after that for a CT and PET scan, which I did.
About an hour after I arrived home from the hospital, I got a phone call regarding the status of everything; I was told that it had originated as testicular cancer, had spread up a ludicrous amount of lymph nodes throughout my body (including ones that went beside my heart), went to both lungs which created clusters of tumours, my left eye and my brain in two spots (any later and it would have been three spots). The proteins they measured in my bloodworks (A.K.A 'Cancer Markers' as they described them to me) were 171,000, and they were supposed to be 5 -- so that's obviously not good. This all put me at Stage 4.
This is where things got a little fast. Doctors were naturally wanting to handle this very quickly, so I was offered to either go into hospital the following day, or the following Monday (this was a thursday); I chose the Monday, so I could get myself sorted out.
Monday rolled around and I went in. Tuesday I had Doctors in my room explaining the sheer severity of my condition and what the plan was; tomorrow I was going in to have an operation to remove the source (you can guess what that was), and the day following I was going to have a portacath inserted into my chest to allow for chemotherapy to enter my system far easier, given they set them up to run straight into your jugular (I still have the portacath in my chest to this day; it takes a long time to get them out, because it's non-urgent). He also told me what protocol of chemotherapy I was going to be following; BEP (Bleomycin, etoposide and cisplatin). The Doctors described this to me as being an extremely hard-hitting protocol and that only young and healthy patients could put up with it.
So, all that happened. The following week I started my first round of chemotherapy (I was scheduled for 4cycles; 1 cycle = 4 weeks.) and that went fine; I'll explain more about how chemotherapy felt in another tab. I was hospitalised for my first round of chemotherapy and after that I went home, having spent around 12 days in hospital at that point.
From there it really was just a big waiting game. Every third week I was going in for 5 days and each for 5 hours to receive the chemotherapy in an outpatients chemotherapy ward, and all I could do was sit and wait to see the results.
Thankfully, I was kicking it in the fucking ass.
I don't recall the exact figures, but removing the source tumours and whacking me with the hardest chemotherapy they had available for this kind of beat the ever living shit out of the cancer; so it was a strong start, an extremely strong start (so good the Doctors themselves actually told me they hadn't seen such a good response before). From there the results only got better and better; by the end of the 4 cycles, my cancer markers had reached around 10ish from 171,000, and they were about ready to stop chemotherapy and enter me into the monitoring stage. I narrowly dodged requiring radiation on my brain, which would have had some serious side effects.
Over a year later and I'm still cancer free (hopefully; I have more tests next month). I'm going in for CT scans every 3 months and MRI's every 6, the same ophthalmologist is looking after my eyes, and I'll hopefully get this damn portacath out of my chest in a few months so I can start working out properly again.
A little side-note; I paid for none of this. Not only did they save my life, I paid for zero of it (aside from parking, and we got 50% off on that) and their service was, is, incredible -- just an ode to the Australian public system for you there. Fuck the private system.
Now that's all explained, I'll go onto some more specifics regarding what fighting cancer is like. I'll likely forget to mention things so don't be surprised if I end up adding things later on.
First and foremost I think I'd like to discuss the most important thing;
How do you mentally cope?
I feel, first and foremost, the best thing to start with in terms of mentally coping is to have a support network. While I understand people sometimes prefer to keep these diagnoses secret, I'll go out on a limb and just say it; it's a bad idea, and you're setting yourself up for disaster by keeping it hidden from people. When I was diagnosed I ensured all of my friends, family and the community I was playing at knew, because I wanted to maximise the amount of people I had to lean on. This might sound a little selfish when worded like that, but at the end of the day; you cannot handle this alone, and if you try, you're going to shatter yourself like glass being dropped from a 3 story building. You need to make sure the people around you know, so at least some of them will be constantly checking up on you; it's how you vent, it's how you stay feeling human, and it's how you learn your methods of coping. I considered going further with this in the form of support groups, although after looking into it I realised it was nothing but depression and round-circle conversations about how people cope with it; I didn't want that, I felt it'd only make things worse for me.
That brings me onto my second point; positivity. It's naturally hard to garner much of this during the process and after it, but it's essential. The more you sit and worry about what might happen, the worse it's going to be for you (and, believe it or not, stress can actually make treatment less effective, as I was told by my doctors). This is why I believe it's important you surround yourself with positive people. I see a lot of cancer patients who believe that they should let themselves cry the pain out and wallow through it because they believe they'll come out the other side feeling better, but the truth is; if you let that envelop you, you won't come out of it -- the situation is just too stressful. Mental recuperation is something you need to handle afterward; in the moment, you need to get yourself on lock, and ready to fight a war.
My only real other point to make is that there isn't some secret recipe for dealing with cancer mentally. Everyone's going to be tougher or weaker in terms of how they deal with it mentally, but the points above are what I'd recommend -- and urge -- to anyone who's trying to mentally deal with cancer. You just have to remind yourself that you will be okay, regardless of what happens.
Naturally a psychologist is highly, highly recommended for all of this, and I myself still go to mine.
All in all;
- Create a support network of real life and online family and friends. Ask them to check on you. Ask them to do things with you.
- Surround yourself with positivity. Do not allow cancer to envelop your mind.
- Recognise that there's no secret formula to dealing with it mentally.
- Consistently remind yourself that you will be okay, no matter what happens.
- Consider support groups, but definitely see a psychologist. You won't regret it.
What is chemotherapy like?
It's different for everyone, but I'll go ahead and ramble about what it was like for me personally; you can probably extrapolate a decent idea through that.
Now; how does the process of receiving chemotherapy work? In the case of an outpatients ward, you'll be sat down in a large (and hopefully) comfortable chair. There'll be a chair beside you for whoever your +1 is. A nurse will come up and go through some details with you, which they'll do consistently every day; name, DOB, address, allergies, so on -- they may or may not want a signature each time too. Once that's all been sorted out they can get to accessing you.
This is done via a couple methods, or a couple main methods at least; the most common one I saw in the ward was through the crease in the arm, although this was a pain in the ass for people to handle because eventually it was liable to collapse the vein they were accessing. This is where the almighty (seriously, I swear by this thing) portacath comes in. A portacath is a small plastic thingo they insert into your chest and run a wire up to your jugular, allowing for extremely easy and extremely effective access to your system. Believe it or not; being stabbed in the chest by a needle is actually 10x better, easier and less painful than getting one in the arm, which surprised me.
So; you're accessed. You've either got a cannula in your arm, or your port's been accessed. The port accessing process is very tedious and very sterile, which I was glad for all things considering. At this point I was usually given 3-4 anti-nausea drugs and a steroid, which was given to me to help with the side effects.
The next step is to flush your system. I was always flushed with a 100mil bag of saline which they hook up to an IV stand beside you (and, in my case, an intravenous anti-nausea drug), and once that flushes through chemotherapy can actually begin.
It takes a little while for the nurses to get it out because of the process they need to go through (these drugs are expensive; very, very expensive) to get it from storage to patient. In my case; on the Monday of my chemo-week I was given all 3 drugs; first came Bleomycin, which a nurse had to manually push in by hand (10mil over 10 minutes) due to the fact that Bleomycin was an incredibly hard hitting drug and had to be introduced to your system properly. Once that was in, etoposide and cisplatin were next. These came out in 1L bags of saline (100mil of the drugs in each) and overall took 2 hours (1 hour each) to flush into my system.
So that's how the process works; but how does it feel?
Initially; like nothing. It feels a little cold (I had a lot of blankets and a big leather jacket) but otherwise the chemotherapy actually entering your system doesn't feel like anything, it just feels like saline entering your body. You'll sit there for however long you need to and half the time you'll completely forget the fact it's going in at all. I actually fell asleep quite a few times during it.
The symptoms are another kettle of fish entirely. After you've had it in your system you start feeling the side-effects a good 5 hours or so later. For me personally; there was a list of a metric asston of symptoms, but due to the anti-nausea drugs and the steroid, I didn't feel a lot of them. My symptoms included;
- Extreme fatigue.
- Numbness in my left hand (about 25% of it).
- Tingling sensations in the soles of my feet.
- Actual but minor nausea.
- A change in my taste buds.
The two most noticeable of these, I'd have to say, are the fatigue and taste. The taste side of it is honestly bizarre; I couldn't taste salt (put sand in your mouth and that's what salt tasted like), I couldn't stand the taste of any soft drinks aside from lemonade, and many of my favourite foods were so disgusting I couldn't stomach them without coming close to throwing up. I had a few select foods which I stuck to during chemotherapy, but I won't bother going over that. Fatigue was just a case of sleeping longer truth be told; I felt like shit through the day, but it wasn't extraordinarily bad. The minor nausea was mainly just me eating at the incorrect times (if I ate after 5PM everything went wrong). Numbness wasn't really even worthy of note, it just made picking things up in that hand irritating.
Obviously chemotherapy feels different for everyone, but given we're all around the same age and (hopefully) healthy to some standard, you can at least gauge what it'd be like for you.
What is a chemotherapy ward like?
Actually great, if I have to be 100% honest with you. Australians have their ways of making light of every situation, and this shined in my chemotherapy ward.
I'll start with layout, though;
Typically a chemotherapy ward has a receptionist that you speak to first, and they'll get your details from you; that's the first thing you come across. There's a waiting room usually adjacent to the receptionist desk which is where you wait for a nurse to come and get you after exchanging details with the receptionist.
Each chemotherapy ward room (they don't usually have doors, they're just open to a hallway) has 4 chairs in it that sit in each section of the room. They're usually massive chairs too. There's curtains around you if you want that, a TV hung up on the roof ahead of you, a table to put stuff on, a chair for your +1, an IV stand and other medical equipment, etcetera. It was honestly quite comfortable and I had no qualms with sitting in these chairs for a good 5 hours a day (every third week, mind).
The atmosphere of the chemotherapy ward is what I want to touch on the most though. You'd think a chemotherapy ward would be depressing and quiet, but it's far from; we Australians, as I said, have a way of making light of any situation. I had friends that I saw there every time I went -- nurses and other patients -- and I absolutely loved it; it made going to get chemotherapy a, believe it or not, somewhat fun experience.
People around me getting chemotherapy were, most of the time, very upbeat people who'd talk to me the entire time I was there (which was nice considering I was usually there for double the amount of time everyone else was) and I had some conversations I'll never forget.
The nurses were something else, too; utterly amazing people, every single one of them -- I never once encountered a nurse I didn't like. They all treated me amazingly, spoke to me constantly (because the nurses are assigned to one room, and they're usually either checking people or sitting on the computer doing stuff in the middle of two chairs) and everything was done with utmost professionalism. Each nurse that worked there at the time knew my name because of how often I was in there, so every time I went in it genuinely felt like I was just heading into another household. I vividly recall one of the nurses accidentally mixing my name up with another patient's (it was corrected, d/w) and from then on she used to call me by that guy's name and him by my name as a joke.
Overall; the atmosphere of a chemotherapy ward, for me, was amazing. If I ever had to go back I wouldn't be bothered. Naturally I hope I don't have to. When you leave for the last time, the nurses will actually probably say "Bye, hope I never see you again!" and it's actually the most heart warming thing you'll ever hear during your time there.
And, yes; the chemotherapy ward nurses are hot; very, very hot. The only one above 30 y/o in my ward was like the bigly supervisor and even she was smoking. I'm actually sad I didn't get any numbers lol.
In closing.
I recognised how long this was getting so I'll leave it here.
Overall; my experience fighting cancer was a mixture of horrible, amazing and astounding experiences. I met people that I'll never forget; like the nurse that told the magazine cart person that I wanted car and boat magazines, because he actually wanted to steal the boat magazines for himself. He used to sneak in after the cart girl left and grab all the boat magazines I 'wanted'. Then he used to slide back out of my room like the pink panther (this was during the 12 days I was in hospital).
If anyone has any questions, please feel free to ask -- that's why I made this thread.
I hope this served its intended purpose well.
Cheers for reading!
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