So much has happened and so much hasn’t happened yet—I don’t know where to begin or whether to rejoice or complain. Honestly, I’m just beyond overwhelmed, which is why I haven’t updated my blog as frequently as I would’ve liked to, but at least I’m getting into the habit of monthly updates or so it seems, while still using Threads to post about my day-to-day activities and stuff.
So here’s your May update, and it MAY be a long read (see what I did there?) Let’s review what has transpired since my last update about things and stuff…
If you’ve been following me for a while, you already know about my battle with cancer (Hodgkin Lymphoma) which started back in 2016. I went through chemotherapy treatment and by the end of 2018 I was cancer-free, and prior to moving to Polokwane, I once again went for a follow-up to make sure that I was still cancer-free. The last PET-CT scan that showed no avid nodes detected was in 2022. Fast forward to 2025 and the cancer may be back.
Results from the latest PET-CT scan are bad; really bad. If it is cancer again, it’s everywhere. But on a positive note, my oncologist said that they don’t know for sure. The scan looks bad but it’s been too long since my last biopsy in order to start with any kind of treatment again. They need to do a biopsy, determine if it’s still the same type of cancer or a different subtype.
What’s baffling to me though is why they compared the latest scan to a mid-2018 scan and not to the end-2018 or 2022 scans which showed that I was cancer-free.
As scary as this report is, there is a glimmer of hope that it may not actually be cancer again. All nodes detected are in areas where I had an injury last year, and I also have a severe infection from exposure to untreated water for which I’m currently taking medication. Muscle injury and lymphoma also appear exactly the same on a PET-CT scan; it’s hard to tell the difference. The only way to know for sure is to do a biopsy. I was relieved when my oncologist said “We don’t know” when I asked if the cancer is back. “We don’t know what it is; we need to do a biopsy.” has been a big relief, yet the fact remains that it may be cancer again, and if it is, it’s really not looking good.
The metabolic activity in my vital organs—if not infection-related could mean that the cancer is busy spreading to my vital organs. If that’s the case, it’ll no longer be a matter of curing it again, but just managing it until it kills me. That is a bleak outlook and a terrifying thought. There is still so much that I want to do and experience in life; I’m not ready to exit existence just yet. I truly hope that that is not the case, and even if it is, that I can get treatment in time in order to still live a long and fulfilling life. In all honesty, I love life. Life is beautiful, and there is still so much to do, to learn, to explore, and to experience.
But here’s the problem: Dealing with this situation and getting to the bottom of it has been a slow, painful, and drawn-out process. I cannot afford private medical aid with access to private facilities that can help me straight away, and despite the wonderful support and sponsorships that I’ve received thus far, it still isn’t enough to cover a medical plan with full oncology cover. And even if I get enough funding to afford it, most medical aid schemes have a waiting period of 3-6 months before oncology benefits kick in. So my only option is to deal with the slow, overcrowded, and understaffed public healthcare facilities that all have huge backlogs and long waiting periods, and hope that they can help me in time.
The PET-CT Scan was done at Steve Biko in Pretoria (Tshwane), which is also a problem as I cannot afford going back there for frequent repeat visits. Each return trip to Steve Biko costs about ZAR 3000, and receiving care from there would require multiple trips per month. It’s simply unaffordable. So now I am in the process of transferring care from Steve Biko to Polokwane Provincial Hospital, and I do not yet have an appointment for a biopsy or a follow-up thereof. If I go back to Steve Biko, I can get a biopsy done on Tuesday, May 20th, but the follow-up for that would only be at the end of June, and any necessary treatment following that would require multiple trips to Gauteng, which I simply cannot afford. It’s simply not possible to keep going back to Steve Biko.
My oncologist at Steve Biko provided a referral letter, along with more detailed reports of treatment and past biopsies and PET-CT scans, to be given to Polokwane Provincial Hospital in order to receive care close to home. I am now waiting for an opening to get an appointment for a biopsy here in Polokwane, so that I can finally get to the bottom of this and receive whatever care that I need at a hospital that’s only 5km away from where I currently stay—much better than the 4-5 hour drive to Steve Biko, and no toll fees or overnight guest house stays are necessary. I can get care close to home! It’s just that now I have to wait even longer and hope I can get the care that I need before it’s too late.
On a positive note: My lymph lumps have been extremely painful. I know—it’s bizarre referring to that as a positive thing— but when it comes to Hodgkin Lymphoma, the lumps are never painful. So as much as I hate dealing with the pain and having to take painkillers continuously in order to cope with it, the pain indicates that it’s unlikely to be Hodgkin Lymphoma but rather something else that’s hopefully not bad, or perhaps even related to my muscle injury. The lumps also change in size and consistency depending on my physical activity.
For the sake of full transparency, here are images of the problem: Notice the lumps in the areas indicated by the red circles which coincide with the PET-CT Scan report…
Overall, despite the painful lumps, I feel great, and despite the very scary PET-CT scan report and my history with cancer, I’m hopeful that it’s NOT cancer again. But I don’t know, no one knows, not until I can get a biopsy, which is yet to be scheduled pending an available opening at the local hospital. I will visit the hospital again soon to try and confirm a date, and hopefully it won’t be as long as the wait times at Steve Biko. Even if it turns out to be cancer, I will go through treatment again and hope that I will be healed again. I’m positive about the situation and hope that whatever issue this is—that it can be resolved and that I can get on with life without this uncertainty hanging over my head.
And another positive note: at least here in Polokwane, when I can finally get a biopsy, the biopsy will be done by an experienced surgeon, not a student like at the Steve Biko academic hospital, so I’m hopeful for a good outcome. I will share more detail on Threads as the matter unfolds.
Support and sponsorship
Over the last 90 days, I’ve received much-needed support. Total funds received for the last 90 days is $555 USD (Approx R10,000 ZAR). While this is not yet enough to cover the cost of private medical care to speed up and resolve my medical situation, it does help immensely in supplementing other expenses such as Internet and other service bills, toiletries, food, and I even bought a new pair of shoes, a new tracksuit for the winter, and managed to replenish some savings that I had to take out of my Van Life savings fund to cover expenses during the months prior.
As you know, I’m Autistic, have ADHD, I am unemployed, not receiving any kind of government social grant, living with my parents, and my only form of income is the financial support from my supporters and sponsors, and the occasional music royalty payments that I receive from my distributor. So I would just like to say how immensely grateful I am to those who have contributed to my cause!
Huge THANK YOU to all my amazing supporters! Your kind donations seriously mean the world to me. Every bit of support keeps me creating, dreaming, and pushing forward. Whether it was a single donation or a membership, you’re fueling my passion and helping me bring more art, music, and madness into the world. I see you. I appreciate you. I’m so damn grateful!
