SPOILER: One of the reasons I haven’t been able to update this website as much as I would like lately is because I’ve been working on my first non-fiction book to tell the true story of my life with cancer in FULL.

This is something that I’ve never done before, and I’m actually having trouble finishing it. It’s super-exciting though to see the whole story unfold as you turn each page.

I got the “crappie first draft” down no problem. Sure, it was messy, but it was finished. Much to my dismay, however, not every sentence sounded amazing.

Still, that was okay. When I write, I write as fast as I can, and I know that I can go back and fix bad writing later. Besides, I was sure any issues would be picked up during the editing process…

Only I don’t have an editor, so I tried to do it myself. But since I don’t really know how to edit, I just skipped over the bulk of the process straight into proofreading. Which is usually the final step, but I’ll just pretend I didn’t know that.

I then did what you’re supposed to do and let the draft rest. I put my masterpiece; I mean manuscript, away for a few weeks so I could come back to it with fresh eyes. This would allow me to read it like a reader, and not the writer. When I read it though, to say I was underwhelmed would be an understatement. I hated it. This was a disaster.

Or maybe not. Because apparently I’m not alone and almost every writer hates their first draft (I don’t know if this is true or not). Either way, it was really quite upsetting, disheartening even, and what I will say is that writing a book is hard. It’s so much more than words on a page. I want to say things with feeling.

This blog has been great, but sometimes things need room to breathe. Living with cancer is incredibly complex and to be able to cover these things comprehensively just isn’t possible. Having 5,000 words a chapter opens up a lot more possibilities.

What I found instead though was (hmm) a whole lot of fluff. That’s right. I said it. When you write, you should write exactly as much as you need. Then get the hell out of Dodge. I’ve spent the past few weeks rewriting entire sections; moving chapters around; and deleting anything that doesn’t help the narrative (this is called polishing your, erm, manuscript or, as I like to call it, putting perfume on a pig ha-ha).

Hopefully, I’ll live long enough to see it released. Right now, I’ve passed it to someone I trust to critique it. I know that she’ll tell me if it’s any good or not. She’ll pick up on the strengths and weaknesses too, which I’m tentatively braced for. I feel another rewrite coming on.

I told my kidneys a joke

In my last post, I started to talk about supplements and cancer. Before I come to that though, there was one other thing that my last cancer scan highlighted, and that was that there’s a new problem with my kidneys.

For anyone who has been following me, you’ll know that I already have stage 3 kidney disease. This means that my kidneys have mild to moderate damage (from the chemo I’ve had) and filter waste less effectively than healthy kidneys. It isn’t life-threatening, but it requires active management to prevent progression to stage 4 (severe loss of function) and stage 5 (dialysis is needed to survive).

When kidney function drops, the buildup of waste causes issues such as fatigue, weakness, oedema (swollen hands and feet), and dry, itchy skin… preserving my remaining kidney function is crucial for slowing down the disease. Fortunately, this is largely achieved by dietary and lifestyle adjustments, and regular monitoring. Most people with stage 3 remain stable.

That’s why it’s worrying that, not only did the scan show a problem, my blood test, the first since starting medication to treat my colitis, also showed signs of increased kidney function impairment (certain medications, like those used to treat colitis, can cause kidney issues and so doctors use routine blood tests to check how well your kidneys work).

Now, it’s worth noting that, although my creatinine level was high (compared to a healthy person), it has been higher. A normal adult male should be somewhere in the range of 0.74 to 1.35, whereas my last result was 1.50!

Creatinine is a waste product filtered out of your body in urine. When the kidneys are damaged, they struggle to filter it out and it stays in your blood, making it easy to test. At the minute, I’m not too worried. It could be a temporary issue, as we’ve seen in the past. However, if it remains high, it could mean my kidneys are failing.

I’m currently waiting on the results of another blood test to see which way my levels are going. Naturally, I’m concerned, and I seem to spend spend half my time waiting for test results. I always knew that the risk of the medication having a serious affect on my kidneys was significantly higher because of my existing issues.

What’s a pirate’s favourite vitamin?

Interestingly, certain supplements, those things that most people think are completely safe, can also cause kidney issues (such as stones, injury, or even disease). This is because they can place extra stress on your kidney’s filtration system – Think of it like a coffee filter. Some supplements can clog or tear the filter, meaning you might not get the fast clean coffee you desire.

I’m not taking any specific supplements known to pose a risk, but it’s always worth checking that anything you choose to do is safe. Supplements aren’t rigorously evaluated like prescription medication and can actually be really dangerous for people with cancer. You should always do your research, but the most common risks are as follows:

• Many common supplements (like Vitamins A, C, and E) contain high doses of antioxidants (substances that neutralise free radicals) which might actually (unintentionally) protect tumour cells from being killed by cancer treatments like chemo and radiotherapy;
• Recent clinical studies have shown that tumours actively consume certain nutrients to fuel their own growth, meaning you might accidentally feed the tumour. This can also help them resist chemo; and
• Many popular supplements (like turmeric and green tea extracts) can interfere with liver enzymes, change how your body processes chemo drugs, and increase your risk of internal bleeding and dangerous drug interactions.

It’s reasons like these that I’m always in two minds when deciding how much to share about my own supplement use. There’s also a strong argument that you should get all of your nutrients from whole foods and drinks, rather than using dietary supplements, but the problem I have with this is that this isn’t always going to be possible for people with cancer.

That’s why I’m in favour of using a targeted approach to supplementation specific to me, my health, and my diagnosis. This is going to give me the best chance of improving my health and immune tolerance. That said, I still prioritise a balanced diet, and I only take a few supplements that I’ve concluded are going to be safe and effective. At the very least, the potential benefit should outweigh the known risk.

Cancer trial results and research are published online regularly in major medical journals, and you can easily access them for yourself (although understanding them is sometimes a different matter). I find that this is a great way to access the latest data, and it helps me to make precise, informed decisions about my own care.

I’ll always prefer this than reading about it secondhand somewhere because at least I know that I’m getting the unfiltered version. So much of what is written online is misleading (at best) and you should exercise caution whenever you read something on a site you don’t know or trust.

Yes, many of these fake cancer cures pushed by pseudo medicine clinics and herbalists across social media sites are often based on real medical studies. However, what I usually find is that the data has been misinterpreted, or framed in such a way that merely highlights a minor positive while masking the actual clinical context.

Vitamins and minerals are good for everyone’s health, but not everyone has the same diagnosis, stage, health history… and therefore it isn’t realistic that we should all take the same ones. Also, more is not always better. We now know that taking too many dietary supplements is actually harmful and can cause issues in the stomach and bowel; liver, nerve and tissue damage; and kidney and heart strain.

Still, some nutrients are difficult to obtain in sufficient quantities (to be effective) from food alone. Many food components are believed to have anticancer properties, and certainly there’s enough evidence now to suggest that eating these can significantly reduce your risk of getting cancer, but when you start focusing on these alongside cancer treatment, the doses required are usually much higher and so a food only approach isn’t likely to be appropriate. In these situations, I think that it’s acceptable to consider supplements.

Final thought

Hopefully, I’ve got you thinking about how you can approach your own situation. And about how reading research can help you understand your diagnosis and possible treatment options available. Look for newer articles from the last two or three years and consider factors such as study design, patient group and end result before concluding whether something is relevant. A lot of these are going to be pre-clinical, which means they’ve only been proven in a lab setting or on animals, and so you’re going to have to make your own mind up. I make decisions based on what evidence is available to me today (because I have to), but I know that most of these, no matter how promising they look, fail in human clinical trials.            

Let me know what type of cancer you are looking at and any trusted information you have found, and I’ll do the same in my next post.

Th-Th-Th-That’s all folks (for now).