After 12 years, my oncologist believes I may have brain damage from the chemotherapy

Oncologist believe I may have brain damage caused by the chemotherapy treatment and the severe side effects I experienced

I went in to look at my medical records online today, records from a more recent time, researching for my book. I figured I could manage this, as opposed to going through the old medical records from my two years of treatment. I was both right and wrong. As I mentioned in a previous post, my oncologist believed I may suffer from mental fatigue and sent a referral to a rehabilitation clinic to see if my inflamed pancreas did in fact cause mental fatigue.

Picture of me, Erik. Due to lack of follow-up, after 12 years they think I may have brain damage.
12 years to find out if I have brain damage. Yeah, great healthcare system we have.

I went in to read the records and saw a new note from this doctor, where the referral was denied and they instead suggested referring me to the neurological clinic to evaluate whether or not I have brain damage. Whether I have brain damage or not, this is just absolutely pathetic. It has been 12 years since I was done with the chemotherapy, 12 fucking years. Now they suspect I might have brain damage?!

If this alone is not proof that the follow-up on child cancer survivors have been beyond useless, I don’t know what is. They have had such a long time to help me, if it turns out I do have brain damage. My memory isn’t as good as it used to be, I have been constantly tired and I get periods where I simply lose all energy, meaning I can’t exercise, or even go outside. Inevitably, this leads to anxiety attacks because I feel stuck – or rather, I am stuck.

If I have a minor brain damage caused by the chemotherapy, even if it can’t be treated, it feels good to know

If I do have a minor brain damage, actually knowing about it could have helped. I don’t know how many of you all realize this, but knowing why something is happening makes it easier to deal with. When I haven’t used morphine or any other opiate for a while and I need to take one, I always, always get bile duct cramps, or spasms in the Sphincter of Oddi – sounds like an ancient Norse god, right? I also get these cramps once in a while when I am on an opiate, but only once every few months.

I don’t have a gallbladder, as I’ve mentioned before it was removed years ago, as such it’s a non-factor. When I get these spasms, I mostly ignore them, though I try to find a comfortable way to sit, and change position when it starts to hurt. Some describe these spasms as excruciating, some call an ambulance. I don’t find them that painful, and I don’t call for an ambulance, because I know why I am in pain and I know that it will only last for an hour or so and then go away.

Simply knowing, even if there’s no cure, can make it easier to deal with. There’s no cure for brain damage, as far as I know, but my issues may have been viewed differently, maybe I could have received help in another way. Instead, here I am, 12 years after the chemotherapy is over, and NOW they think that I might have brain damage. I realize it may very well turn out that I do not suffer from brain damage, I’m not saying that I do have brain damage.  Yet, that’s not the point, she suspected it could be mental fatigue at first so strongly she sent a referral. Once that bounced back, that clinic stating it could be brain damage, she sent another referral to a neurologist. Basically, the point is that after 12 years, she strongly suspects that  something is very wrong, which is enough to conclude that I haven’t been given the care I need and am entitled to.

It shouldn’t take 12 years to realize I might have brain damage from the chemotherapy they injected in my spine

What’s so awesome about this is that I found out reading my medical records, and the nurse who is my contact with my oncologist wasn’t working today, and my oncologist isn’t back until Friday – when we have an appointment. I realise that they are not at fault for me finding it out this way, I choose to see everything in my records. However, had the system worked, I wouldn’t have found it out today at all. I should have known about it for a decade already!

This system is completely, and utterly broken, it is pathetic beyond comprehension how something like this is acceptable. I have struggled my way through adult learning classes because of a general lack of energy, and sudden, gigantic drops of energy, that forced me to take a hiatus from school for the semester over and over, or like last time, for an entire year.

I am starting to feel desperate here because no one seems to give a fuck about the patient once the treatment is over and done with. That new clinic they opened, which wasn’t new for me, is doing the same thing as before, only now they maybe have more time to help. Maybe.

Yet, it could also have been the extensive addendum to the forms I got to fill out, where I scolded them for lack of follow-up and other things, which could very well have prompted this sudden change. I say this because she didn’t tell me these things during our first appointment, she phoned me the day after. This is when she told me about the suspected mental fatigue, and referred me to a plastic surgeon to hopefully remove my stretchmarks. I don’t know exactly why this is all happening now.

What I do know that this is not acceptable. They knew perfectly well that they injected toxins, in to my spine which they know is very much connected with the brain, it’s part of the fucking reason they did those injections. They know I get severe migraines ever since the chemotherapy, they know and have known for a long time about my issues. Still, here we are, 12 fucking years later.

Media is largely responsible – they rarely report the downside, only the uplifting stories, making us feel inferior

I do not even know what to say anymore. Every time something cancer-related is brought up, they seemingly feel forced to make it seem positive so people don’t get depressed and switch the damn channel. I hear nothing in the media about what happens after the cancer, or the lack of follow-up. I know my treatment was extreme, statistically speaking, but I refuse to believe I am the only one who have this many health issues caused by the chemotherapy. Meanwhile, it makes me feel weaker because I got hit harder by the treatment and simply became handicapped. Subsequently, when the public is then bombarded with stories of survival and positivity, what conclusion will they draw? I feel many will simply feel that I am weaker than others.

After 12 years they figure out I might have brain damage caused by the chemotherapy treatment.
My medical records, names redacted. It basically says, “referral denied” and they suggest it could be brain damage, prompting my oncologist to send a referral to a neurologist.

Nevertheless, let’s say that I am, hypothetically the only one – why did they not design a personalized treatment plan for me? Why did they not look closer at this, you know, like, 12 years ago, or even ten, eight years ago. I am getting so tired, the journalists from UNT were so pathetically dim-witted that they did not see the issue and seemingly, the rest of the media focus on all the positive outcomes instead of the depressing ones. It is always the same thing – those of us who got handicapped due to the chemotherapy, we are nowhere, we do not exist.

I am beyond speechless, I don’t know, I just do not know. If this is going to continue, if there are no changes made to this flawed system, there’s no way I’ll ever be able to live even a half decent life. I know, cancer is depressing – but this is getting fucking silly. Why are there no reports regarding these issues? I am flabbergasted that there are no reports about the life after child cancer, the ignorance never cease to amaze me.

When will this change? Will it change?

I am hoping the journalist I contacted at the radio station can change things, to finally get this out in the open. The problem is that this is complicated, I have had so many medications, so many side effects, and it’s been going on for 14 years, if you include the time of treatment. Doing so is necessary, seeing how it affected me in so many ways, physically but also mentally. This means that it’s not over in 15 minutes.

In writing my book, still at around 25k words and I’m not nearly done, I remember certain encounters and I have to take a break because I start crying – yesterday I had to stop entirely. Why didn’t they give me pain relief? During the mouth infection, my mouth started to get a layer of necrotized skin/flesh and it had to be removed, forcefully. They gave me diazepam, a muscle relaxant and sedative, but no pain relief, no midazolam (midazolam is stronger than diazepam, they should have used that). Then they took these porous, white things that looked like a lollipop and just ripped out the dead flesh. I felt it all, but I was sedated and my muscles were relaxed, as such I was defenceless. I just laid there, in the bed afterwards, crying, wishing for death. That, what they did, was child abuse, nothing less. My treatment was a disaster to begin with, and it simply never ends.

If something does not change, I will forever have to endure this subpar treatment, and I have not fought my way through the treatment, survived a lethal pancreatitis, just to receive treatment like this.

Broken heart due to lacking follow-up, leading to a 12 years wait before they realize I might have brain damage.
It really does break, not only my heart, but the entirety of me.

This needs to change, it has to. I am getting over this depression – which was caused by a careless physician, which is yet another point to add how ill-equipped certain individual doctors are to treat child cancer survivors. How the system failed me, again. I will reach a point where it is too much, though and I will crumble.

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