Please, no, not the C word!

Not this again! I’ve already been sliced open, poked, prodded, and pumped full of poison. I don’t want to go through all that again!

So, what’s this all about?

In 2016, I discovered some strange lumps on my neck. I had night sweats so extreme that I woke up completely drenched, as if I had just had a shower and gotten into bed without drying off. My legs were so itchy all the time that it felt like I could literally scratch the skin off. I felt tired all of the time and didn’t have an appetite. I already weighed very little, but my weight dropped even more. I was about 40kg beneath what I should’ve been for my height.

I researched the symptoms and discovered that I may have cancer—Hodgkin’s Lymphoma, specifically. I first went to a General Practitioner (sponsored by family) to share my self-diagnosis and get advice on what to do next, but he told me it’s probably just an allergy and it’s nothing to worry about. I still knew that something was very wrong. The allergy medication the doctor prescribed did absolutely nothing, and my symptoms kept getting worse.

I didn’t have medical aid or medical insurance (and still don’t), so I couldn’t afford to see a specialist of any kind to investigate the matter further. My only option was to rely on government aid. I went to the Steve Biko hospital in Pretoria, which is part of the University of Pretoria, also known as the Government Academic Hospital where they train all the future doctors, nurses, specialists, and surgeons. I was first sent to the infectious diseases department where they did screening for HIV and TB, as my symptoms were apparently common in HIV and TB patients as well. But after all of those tests came back negative, they finally started screening for cancer.

My self-diagnosis was accurate all along. It was the C word!

After three surgical biopsies, a bone marrow extraction, and a PET-CT scan, it was determined that I had indeed self-diagnosed myself correctly. I had Stage 3 Hodgkin’s Lymphoma—a type of cancer of the lymphatic system.

I immediately started chemotherapy and went for four bi-monthly treatments. I should’ve gone for six, but I ended the treatment voluntarily because it felt like the chemotherapy was killing me—and it was. They had to give me frequent injections to keep my white blood cell count up because the chemotherapy was killing off all my white blood cells. I was in constant pain—couldn’t move, couldn’t eat, couldn’t sleep. Upon deciding to stop treatment, they did another PET-CT scan. The treatment worked! It nearly killed me but it worked! The affected lymph nodes were no longer detected, but a new problem showed up on the scan that wasn’t there before starting chemotherapy. My oncologist told me that the new mass was most likely caused by the chemotherapy and/or the PET-CT scan but that I could stop treatment and I’ll just need to go back to the hospital on an annual basis for a checkup—to keep an eye on things.

Chemotherapy nearly killed me, but it worked!

After treatment, I went to a natural detox camp (sponsored by family and friends of the family) to get all the chemotherapy poison out of my system. This involved a week of high-intensity sauna/sweat treatments, natural detox medications, a whole-foods vegan diet, and plenty of rest and exercise. I felt great afterwards, everything was well, and then after about a year, I went back to Steve Biko again for a checkup.

They performed another PET-CT scan, and nothing had changed since the previous scan. I felt great, all my symptoms were gone, I had no swollen lymph nodes, and there was nothing to worry about. They just advised me to keep going for annual checkups, but I haven’t done so since moving away from Gauteng.

I’m now living in Polokwane, Limpopo, and I absolutely did not want to go back to Steve Biko ever again. I’m on the autism spectrum with ADHD and extreme social anxiety. Going to the government hospital, waiting in noisy, crowded rooms, getting treatment in a hall with many other patients, and the process of a 30-minute treatment session taking up an entire day due to the mismanagement of the facility—I was traumatized by the ordeal. I did not want to go back and deal with that again unless I absolutely had to. And now that I’m living far away, I couldn’t easily do that anyway.

The government hospital requires all patients to check in before 7 a.m. in the morning, then sit and wait to be seen by an oncologist, which usually only happened around noon or some time after lunch. For treatment, there was another wait, and I always only ended up getting out of there at around 4 or 5 p.m. When PET-CT scans were required, they had to be scheduled on a different day, and it was the same process; be there before 7, wait in an overcrowded waiting area, and only getting out of there some time in the afternoon.

Each checkup required 3 visits to the hospital: First, to see the oncologist, second, to go for the scan, and third, to see the oncologist again. This was always split up across 3 separate visits—each visit taking up an entire day.

Living far away from Steve Biko now, with a single trip to Pretoria costing around R2000, remembering the overwhelming, overstimulating, and anxiety-inducing situation of each visit, and not having an extra R6000 budgeted to spend on travel just for a checkup (when I felt completely fine) just wasn’t worth the stress—I stopped going for checkups.

Fast-forward to 2024: Please, not this again!

Earlier this year, some family from Australia came to visit us. We had to set up a room for them, and I helped with moving heavy furniture to get the room ready for them. I ended up hurting myself in the process by damaging a muscle in my right arm. It was so painful when it happened that it felt like someone either ripped the muscle out of my arm or stabbed a large blade directly into my arm. For weeks after, I couldn’t even raise my arm above my head because it was too painful. The muscle would pull tight and cause severe pain and discomfort. Large lumps also developed in the lymph system in the general area of the injury. I have a large, sore lump in my right armpit, a smaller, firm, and painful lump right on the bend of my shoulder, and a small, firm but not painful lump above my right pectoral (between the pec and collarbone), and a large mushy mass right underneath that lump on my pectoral.

I did my research again and learned that these lumps could be due to muscle trauma. The lymphatic system will clear out the liquids from internal injuries and swell up in the process, and that it could take many months to fully heal. It could also be caused by Vaping and I vape, a lot. I go through one Vuse ePod per day.

Not being on Medical Aid, nor having Health Insurance, I avoided the expense of going to the doctor and decided to just wait it out. It would surely heal over time, right? Well, after many months, it didn’t really get any better. So, my parents then offered to pay for a doctor’s visit to find out what’s actually wrong and if something can be done to fix it.

The local doctor said that it is unusual for a muscle injury to cause such lumps. I told him about my medical history with Cancer—Hodgkin’s Lymphoma that caused such lumps in the past but that I didn’t have any other cancer-related symptoms. The doctor immediately sent me for a Sonar, which showed multiple lesions on my right pec, and multiple affected lymph nodes in the area. With my medical history, he advised me to get a biopsy as soon as possible to make sure that it’s not Cancer again.

Personally, I still feel like all of this is just caused by the muscle injury that happened in July, but it should’ve healed by now, surely? So there’s a possibility that this could be the evil C word again! Another possibility is that this could be caused by vaping. I’ve read some reports, forum posts, and comments of various people on Reddit experiencing swelling in the lymphatic system due to vaping.

Muscle Injury, Effects of Vaping, or Cancer (again)?

It could be any of these things, or a combination of some, or all of them. My local GP made it clear that it’s important to rule out cancer as the number one priority, due to my history with cancer.

The GP first wanted to schedule me for a needle biopsy with a local surgeon, but after speaking to the surgeon, the surgeon advised against a needle biopsy as it could cause the cancer to spread (if it is cancer). I remember now that Steve Biko advised the same. They did three surgical biopsies on me (because they messed up the first two) — It’s safer to cut out the affected lymph node entirely than to poke a needle into it and possibly end up spreading its contents., and a needle biopsy doesn’t produce enough volume to accurately test for lymphoma. So, the local surgeon and GP recommended going back to Steve Biko as it would be too costly to do it here, privately.

I don’t have medical aid or health insurance. A surgical biopsy and a visit to a private oncologist could easily set me back over R30k, if not more, which would be a huge waste if it ends up being nothing to worry about.

I do have some funds saved up (towards my van life goal), and my parents offered to help cover some travel expenses to get back to Steve Biko again. Now it’s just a matter of getting an appointment at Steve Biko and actually going back there.

The mere thought of the process is causing extreme anxiety and PTSD, but it must be done, just to rule out cancer. But there’s also the possibility that it could be cancer (again). This is all extremely stressful, and I’m losing sleep and sanity over it. I really do not want to deal with all of that again. But I also really want to live and experience all that life has to offer.

I “have to” go back to Steve Biko—just to be sure.

My main priority now should be to get back to Steve Biko, somehow force myself through the three-visit checkup process again, possibly get cut open again—all just to hopefully rule out the C word. But this time, it doesn’t feel like cancer. I don’t have any other lymphoma-related symptoms besides the sore, swollen lymph nodes in the area where I experienced muscle trauma earlier this year.

Maybe I’m worried for absolutely no reason. Maybe a visit to oncology is not even necessary. But maybe it is? Maybe the cancer is back? I have to make sure!

Honestly, I hate this. I wish I could just go to sleep and wake up the next day with the lumps being gone, and not having any pain in my right arm and armpit. The mere thought of going through Steve Biko’s anxiety-inducing and overstimulating processes again has me bordering on a mental breakdown or autistic meltdown. But I want to live! So I have to do it!

Starting the process all over again

My family has been in contact with Steve Biko telephonically to arrange a checkup for me, but because it’s been so long since my last checkup, they’re struggling to locate my patient data. The South African public healthcare system is extremely unorganized, mismanaged, and archaic. They still use physical files for everything, and they discard said physical files after a couple of years. They said my file may be in an archive somewhere or possibly discarded but that I can email them copies of any documents that I may have from previous visits, but that the process would have to be started all over again.

Fortunately, I did hold on to some of the documents from my previous visits. I still have my patient stickers, the report from my second-to-last PET-CT scan, and the papers I had to sign for the unregistered, experimental chemotherapy treatment from Switzerland that I was receiving at the time. I was hoping that I could avoid another biopsy and just have them do a PET-CT scan again, but if they’ve discarded all my data, a biopsy and perhaps even another bone-marrow extraction would probably be necessary again. I hate it!

Now it’s a matter of— do I ignore all this and trust my own judgement (that it’s not cancer but just severe muscle trauma and possibly also vaping-related) and just wait it out (and try my best to quit vaping), or do I do the wise thing and trust medical science to get to the bottom of this, even if it means being cut open, poked, prodded, and possibly poisoned again?

I trust medical science, and I trust the treatments. It worked the last time. Thanks to the experimental chemotherapy treatment from Switzerland, I went from having Stage 3 cancer to being cancer-free after only four treatment sessions. It nearly killed me in the process, but it worked out in the end. If it means that I’ll have to go through all of that again in order to stay alive, I will do it—reluctantly, but I will do it.

So what do I do now, exactly?

Task 1: Send an email to Steve Biko Oncology, providing them with scans of all the documents that I still have from previous visits in the hopes of getting an appointment as soon as possible.

Task 2: If/when I do get an appointment—make a plan to travel to Pretoria one day before, sleep over in the cheapest hotel or motel that I can afford, so that I can be at the hospital bright and early the next day, as is generally required—or I could stay here and wake up at 2 a.m. in the morning and drive through straight from here. If only I already had my camper van, I could’ve made my way over there in my own time, well ahead of the appointment, and camp out some place nearby so that I’m right there—in my own “home” (on wheels) in case I need treatment again.

I would also need a family member or a friend to go with me as I can’t physically cope with the waiting area situation at Steve Biko. It’s not at all accessible or friendly to anyone on the autism spectrum. Previously, my mother, father, or a friend would go with me, wait on my behalf, and I would be outside, walking around with noise-cancelling headphones blasting distracting, calming music, or waiting in the car, fixated on a TV show or video game on my phone to distract from the overwhelming, meltdown-causing situation that is the overcrowded, noisy, stinky, and sensory-overwhelming Steve Biko waiting area. Hopefully, I can find a way to have someone with me to deal with that again, and hopefully, I can build up the courage to actually get this done. I want to follow the medical advice of my doctor, and if it is cancer again, I want to abide by medical science in getting the proper treatment again. I just wish I didn’t have to deal with any of this as it’s beyond overwhelming for me.

I’ll try my best to keep you all posted on the process and the outcome of all this.

#Personal