My cancer story
If you’ve read my stories then you may be aware that I’m a cancer survivor. I have considered writing this story before and I have decided to share my story.
So… in winter of 2018 (that’s in the middle of the calendar year in Australia) when I was 30, I noticed one day that I had a swollen left testicle (no, I do not have a picture of it). I wasn’t sure what the story was there and I left it for a day before deciding to book an appointment with my GP. My regular GP wasn’t available for that day so I booked it for the next day.
So I went and saw my GP and if I recall, I had to go and see a pathologist, which I did. I can’t remember if there was anything else involved here but it was about two weeks after my initial appointment that I saw my GP again and he informed me that it seemed as though I had cancer (but that they wouldn’t know for sure until they removed my left nut, as I think he mentioned shortly afterwards).
Okay, so how did I react to this? Probably differently to how other people might. I didn’t say much at all really. I didn’t really know how to react to it, which is how I often tend to be in emotional situations. I think I just said “Oh” and sat there processing it. And then the doctor said that I had mostly likely had it for a while and he seemed curious as to how I hadn’t noticed it.
And I didn’t know why that was. I wasn’t sexually active, although that’s not how you get testicular cancer. I wasn’t checking my nuts regularly, as I did never thought to do so. And I wasn’t being intimate without anybody else, nobody else had noticed it either.
In fact, I still don’t know the answer to how long I had it or how I got it. Was diet a factor? I wasn’t a heavy drinker. I didn’t smoke. Wikipedia informed me that it was most common against young white men in developed countries (yes, that was me). Why, I’m not entirely sure. No doctor seemed to have an answer to it.
Anyway, so he asked me if I had health insurance. Note that I live in Australia, not the USA, where the health system is a little different. I had cancelled my hospital cover shortly beforehand because I felt that it wasn’t worth keeping (about half of Australians don’t have it, not necessarily because we can’t afford it but because in my opinion, it’s not very good value). We actually have universal health care and we have a public and a private health system, so to speak.
If you go public, you generally don’t pay anything for treatment, however you will have to go on a waiting list, unless it’s an emergency (and this was something life-threatening that could not wait very long). Whereas if you go private, then you basically get the same treatment, but my understanding is that you get to jump the queue, you might not have to share a room with other patients and you might get better food or higher quality care. In theory, anyway.
But private health insurance doesn’t have a great reputation in Australia and frankly I would happily pay a higher Medicare levy (an extra income tax we pay) if it meant not having to worry about private health insurance. And I would actually end up paying extra for the treatment (in addition to paying for insurance) if I had gone private when I could have had it done for free.
So, I told him I didn’t have insurance and he arranged for me to see some doctors and I won’t go through it all but I remember having to see various people at different times for different specific purposes. Work was the last thing on my mind. Thankfully I had accumulated months of “personal leave” (that’s the one that covers things like sick leave) as I had been working there for over 8 years by then.
Part 1 — The orchidectomy (removal of the left testicle)
I didn’t find out the date of the surgery until two days beforehand, because the hospital staff themselves didn’t know the date until then. When I did find out, I let my parents know and they booked a flight for the next day to fly over. Because I didn’t have anybody here to care for me (as I mentioned in my “About me” page I moved to my current city for work purposes back in 2010 and I don’t have any family here , no partner, nothing). So, I’m not entirely sure who would have cared for me if my parents hadn’t. So they did come and they stayed with me for… I can’t remember how long exactly. Might have been a week, maybe longer. My sister came up here too for a few days.
The procedure involved removing the left testicle by cutting me open around the top of the pelvis and removing it from there (probably makes a lot more sense than cutting directly into the testicle — that could get messy). It was called an orchidectomy and it didn’t take long to do (about 20 minutes). I don’t remember it being particularly painful (but I’m sure I had been given drugs) and I was in hospital overnight and went home the next morning. My parents and my sister stayed with for me for a few days after the surgery then went back home.
I did get an unexpected visit from someone at work during my time in hospital and that person had arranged a get well card for me, which was nice.
We didn’t know at that point whether that would be it or not or whether I would have to have chemo afterwards. But my parents (who are in their 60s and retired) were prepared to come back later if they needed to.
What actually happened was that Dad visited me 5 times and Mum visited me 3 times in total (not counting that one time they visited that had nothing to do with my treatment — but I’ll get to that later).
Part 2 — Chemotherapy
So as it turned out, I did end up needing to have chemo because the cancer had spread to the lymph nodes. At the time (being 30) I knew nothing about this stuff. I didn’t really know what chemo was and I also didn’t know that lymph nodes are (Google them if you’re not sure). But what I can say that once cancer spreads to the lymph nodes, it becomes almost impossible to stop without using a technique such as chemo.
What is chemo? It is where they inject toxic chemicals into your body to kill the cancer. It is an unpleasant as it sounds. It can have all sorts of nasty side effects and it can actually kill you. In fact you gave the treatment that they gave me to an 80 year old, it quite possibly would kill them. It was quite intense treatment.
It looks something like this:
They have this thing called an IV drip which is on wheels and it contains a tube. They put a needle in the end of the tube and insert it into the “back of your hand” as shown in the above picture and they pump the chemicals into your hand.
The chemicals they used for me were bleomycin, cisplatin and etoposide (known as BEP) as shown here:
I don’t expect you to remember all this. But I had to go through three rounds of treatment and each lasted for three weeks. So that was nine weeks all up.
Etoposide was an anti-nausea drug (it stops you from vomiting). Cisplatin was the drug they gave me for five days in a row (from Monday to Friday for the first week). Then on Monday of the second week, they gave me bleomycin then again on Monday of the third week. And I repeated this process two more times.
For the first week, my dad (using my car) drove me to and from the hospital and I went home every night. Then after the first week, he went back home (and so did my mum, who only came for the first round) and I sorted myself out for the next two weeks. Then dad returned in Week 4 before leaving again after that and then again in Week 7.
The nurses in the cancer centre were nice and were definitely more pleasant than some of the other nurses I had met. Over the nine weeks, I got to know most of their names and faces (although I don’t really remember them now). My parents did sometimes stay with me during the treatment but they didn’t stay with me the whole time (I didn’t exact them too though — it wasn’t particularly exciting).
I did start to lose the hair on the head but I didn’t have much hair in the first place (I don’t have “the hair gene”) so I didn’t care that much and I shaved it off (because it was less messy than having hair drip everywhere in the house).
What did chemo actually feel like. Well it’s not something you can truly understand if you’ve never had it but it feels a little like being badly hungover, except that you never got to have any fun beforehand (and yes, I was allowed to drink during chemo but from my experience, you don’t really feel like it).
Also, I didn’t have much of an appetite the first week but later on, the opposite happened and I started feeling ravenous. Then in Week 4 (when I had the daily etoposide and cisplatin treatments) I went back to not having much of an appetite (although I did still eat).
In short, it was one of the most unpleasant experiences I’ve ever had to go through. In fact, I can’t think of anything I’ve ever had to do that was more unpleasant than that.
Also, before the chemo (or possibly earlier, I can’t remember) they gave me the option of freezing my sperm (in case it made me infertile). I was a little unsure of how I felt about the whole thing (I’ve never had a strong desire to have kids but I hadn’t 100% ruled out ever having kids) but long story short, I didn’t end up going through with it.
My parents next visit
My birthday falls in mid-November. Months earlier, before anyone knew that I had cancer, my parents had booked a trip to visit me for 10 days. My chemo treatment had recently finished by then and they still came and visited me. This was more of a “fun” time compared to their previous visits.
We went down to the New South Wales (that’s a state of Australia — the state that surrounds the territory I live in) South Coast for a couple of nights and rented an AirBnB, where mum took this picture of me:
I really enjoyed this time actually. The worst was (hopefully) over and I wasn’t sure if there was any further treatment or not but I didn’t need to worry about that until I was informed otherwise. And nothing else seemed to matter except for the present, as in I wasn’t thinking too for ahead. It was just really pleasant. And (while I didn’t have a big party or anything) it was the most pleasant celebration I have had in a long time.
Part 3 — Major surgery (to remove the lymph nodes and reconstruct blood vessels)
So as it turned out, the chemotherapy had done its job, but they still needed to remove some infected lymph nodes and reconstruct some blood levels (at least that’s what I was told). This apparently needed to be done soon and they weren’t sure if they were going to be able to do it at my local hospital, or whether to send me off to Sydney to have it done there. It was a major operation that took something like 4 hours and obviously needs to be done by an experienced surgeon (there were at least two or three surgeons involved in my operation). And it would require at least a week in hospital to recover.
They ended up telling me that they could do it on 19 December, 2018 (yes, I still remember the date). Christmas was coming up and obviously I was going to have to cancel any plans I had for Christmas, because it apparently couldn’t wait. And my parents flew up to be with me, so Christmas that year wasn’t what any of us had planned (it was basically a write off). But it was what it was.
I remember (in the meeting when I found that I would need further surgery) the surgeon saying that the operation could have an effect on ejaculation. Which I can confirm did happen (I’m currently infertile because of that and could possibly be fixed with further surgery if I wanted to go down that path). I felt slightly awkward to be honest, when the surgeon was talking about it (my parents were listening in via teleconference) and didn’t say much in response to it (and neither did they).
I also remember having to have a MRI at some point beforehand. I remember I had to pay $550 (Australian) for it, which was easily the most expensive part of the whole treatment for me. Not sure why it wasn’t covered. I paid nothing for the surgeries and very little for the chemo.
So my parents flew up on the day before the surgery and I picked them up from the airport. The next morning I had to had be at the hospital early and had to fast (which is standard procedure). My dad came to accompany me to the hospital again and we wanted until they were ready for us. When they were ready, I was wheeled into the operating theatre (which is generally set to a very cold temperature) and they gave me a epidural (some sort of anaesthetic) and then a general anaesthetic. They did this, then I was unconscious for a few hours and don’t remember anything after that.
Until I woke up in the recovery room (which I strangely enough don’t remember during the first surgery — probably because I was still unconscious). When they were ready, they wheeled me into the ICU, where I stayed for three nights.
And this was what they did to me:
When that first picture was taken, I had a catheter in me (if you don’t know what a catheter is, Google it), a blood bag attached to me (they cut a hole in the side of my torso) and what you can see in this picture. Within the first few days, the things you can see in this picture got removed but the catheter and finally the blood bag were the last to go. That was an… odd sensation when they were taken out.
During the week I was in hospital, my parents dropped in and visited me about a couple of times a day (usually once in the morning and once in the afternoon). A friend of mine also visited me a few times. And my then supervisor visited me two or three times.
Being in the ICU was… an experience. There was some guy (I think he was older guy who spoke German) who was thrashing around all night while the nurses had to keep restraining him. I couldn’t see it though.
I was in the ICU for a few days and I got plenty of attention from the nurses, because the ICUs with a high nurse to patient ratio — it doesn’t take a genius to figure out why.
I remember it taking a while to pass wind and for my digestive system to start working again. It gradually did start to function again.
I remember being on a strictly liquid diet for the first few days, which was things like water, soft drink (soda), jelly, liquid soup, etc. After a few days, this was “upgraded” to things like yoghurt, custard, milk, thicker soup (not chunky soup), etc. My body could handle anything else at that time. If I was someone who (for whatever reason) did not eat dairy then I’m not 100% sure what would have happened.
So after a few days in the ICU, that they moved me into the “regular ward” (not sure what the technical term is). I did not get anywhere near as much attention from the nurses (which was quite an adjustment at first). But at least I got regular visits from my parents and a couple of other people (as mentioned above). Many of my current friends didn’t know me at that time (but they’ve certainly heard me mention it).
I did however, get another “get well card” from everyone at work and what I believe is called a “care package” (my supervisor dropped it off). He also dropped off a heap of grapes, which unfortunately I was not able to eat. I was given chocolates which I could eat (as long as it was the kind that doesn’t require chewing).
So the surgery was on 19 December 2018. I was released from the hospital on Boxing Day (the 26th). I would have gone into the ICU on the 22nd. My body got really stiff from being in the hospital bed that long and I don’t believe they’re designed for tall people (not many things are). I didn’t have a proper Christmas dinner (as I was still on that dairy-based diet) but I was told from the other people in the ward (there were four beds in the ward, all with curtains, so you got some privacy) that I didn’t miss that much (well, it is hospital food).
They didn’t put me on the “full” hospital diet until the same day that I was released. But I did have a proper dinner that night at my house. Mum made sure I had plenty to eat. Dad picked me up from the hospital (Mum has a licence but doesn’t drive).
It was good to sleep in my own bed again. My back was really sure and so was the part where I had been cut open. They did give me drugs to take daily (there were a few) but eventually I didn’t need them anywhere.
Part 4 — Recovery and Remission
So I was now what is known as being “in remission”. That means that I have been released from the hospital and if I need to go back to the hospital then I can. They don’t like to say that you’re “cured” in case you have a relapse (but I didn’t have a relapse and still haven’t).
My parents hung around for a couple of weeks after I was discharged from the hospital. I did need to be cared for at that time (and I’m not sure who would have done it if they hadn’t). But by then, I was self-sufficient enough to return to work (at my office, provided I didn’t have to didn’t have to walk far or do anything too physical).
It took me probably a good six months to fully recover from the surgery. Although even then, my body will never be the same as it was beforehand.
It was about six months after the surgery that I did get to return to my hometown and visit my family. I met my then one-year old niece (who I had not yet seen — because I didn’t been able to go “home” for Christmas, as described above). It was during this trip that this picture was taken:
If I recall, I began my “remission” phase by having quarterly checkups with my oncologist and biannual CT scans. Over the past few years, this has gradually become biannual checkups with the oncologist and annual CT scans. Once five years have passed (i.e. in 2024) I will hopefully not have to continue to have CT scans but it depends on what they find.
I have a few “teratomas” (inactive cancer cells), the largest of which is apparently about 4mm in diameter. Apparently before the chemo, I had cancer cells that were 7cm in diameter (I only just recently found that out — it was eye opening). The only reason I am still currently having CT scans at all is because of that one teratoma that is larger than the others.
The oncologist doesn’t seem to think it matters anymore what I eat or drink but I guess it’s mostly a matter of common sense. Like I said, I don’t know what caused the cancer and nobody else seemed to do. Google or WebMD won’t tell you what causes testicular cancer.
So that’s my story. The more details I include the longer it gets. But that’s a relatively comprehensive version of it. If you any further specific questions, let me know.
