I’m sitting here, mid-afternoon, with a cup of green tea. Which, if you’ve read my post ‘Hello, I’m Back, And Green Tea’ you’ll know it’s very good for you.

If you haven’t, well, why not?! Just joking. You’re not in trouble. Still, when you’ve finished this post I suggest you find it on the website. Which you’re probably already on, but you might not be.

It’s raining outside, with lots of thunder. Yay! Finally it might cool down a bit. It’s been very hot and humid the last few days, which is not uncommon at this time of year on the Gold Coast. After all the years of living here I still can’t adjust to the humidity. Sun and heat ok, humidity yuck.

So life is good this afternoon. Green tea, rain and a storm. I can enjoy this moment in time. However, over the last year or so it hasn’t always been like that. Hence the title of this post.

Although I am very optimistic and determined about becoming cancer free, it’s not always easy and just when you think you’re on top of it something hits you with a curve ball.

I should make a distinction here between remission and cancer free (cured). Some people think they are the same thing. They are not. Although I’ll be happy with remission, I’m aiming to be cured. At the moment I’m stable, which is good. Next would be partial remission, then complete remission and finally cured. Cured, or cancer free, means there are no traces of your cancer and it can never come back, although proving that absolutely is very difficult. Remission means that the signs and symptoms of your cancer are reduced. Remission can be partial or complete. In a complete remission, all signs and symptoms of cancer have disappeared. Complete remission means that there could be some undetectable traces of cancer in your body and it could come back. Remission could last months, years or even a whole lifetime. If you come out of remission it normally means that the cancer has come back. Also, no evidence detected (NED) is similar to complete remission. I probably should write a post about this in a little more detail, but that’s for the future and right now I want to concentrate on the present moment.

The last year has not been all plain sailing. After I picked myself up from my cancer diagnosis, back on October 10th 2022, I started the treatment path I had chosen. All was going well, I was on track, I felt good. Life and health felt like it was getting better. I was on an upwards trajectory. Then April 2023 hit and, bang, everything went out of the window.

It was around the time I was due to have a PET scan, when suddenly I got terrible pains in my stomach/bowel area. The sort of stabbing pains that take your breath away and leave you curled up in a ball crying. It was awful. I’ve never had pain like that in my stomach before. I thought the cancer had progressed and that I was going to die. Not good for the family emotionally and not good for me in every aspect. I couldn’t eat properly which was not what I needed as I was trying to put on weight, not lose more of it.

Danielle took me to the WiSE emergency clinic where I was given a CT scan. After waiting about an hour we got the results. I was told that it looked like I had a partial intussusception. I was told it means that one part of the intestine had slid into another part of the intestine and was probably caused by the cancer in the lining of my bowel. Great, just what I needed. They packed me off to hospital to be seen by specialists with that area of expertise

One of the specialists compared the CT scan to an earlier CT scan, from a few months earlier, and thought that I may have already had it. Even though I hadn’t had pain before. Which I did find interesting, although maybe a little confusing.

I was admitted to hospital to spend the night so that they could monitor me. The specialists were deciding if they should operate or not. After being poked and prodded by various people a decision was reached. The bowel specialists had consulted with my haematology team and decided against operating. It was considered too risky as it would mean having to cut where the cancer is. If they got it wrong the cancer could spread, and no one wanted that. So they decided to discharge me and hoped that it would resolve itself. I was told to take medication if I was in pain.

Unfortunately most heavy duty pain killers are opioids, which is the last thing I needed. Opioids if taken regularly cause constipation and I can not be constipated with my condition. Due to the majority of my cancer being in the lining of my stomach and bowel I need to be regular otherwise I’m in trouble. It’s getting better this isn’t it. I told you it’s not all plain sailing.

Then some good news. Hurrah!

After talking to my GP it was decided that the best course of action was for me to smoke marijuana. Legally of course. You can do that in Australia, which is great. First we had to get TGA approval and after that I was given a script for marijuana. The script goes to the chemist and you get a tub of grade A buds. Life’s not so bad sometimes. It’s the same quality as what you would get in a good coffee shop in Amsterdam. My mother-in-law brought me a vaporiser and off I went. Literally. With the fairies.

It’s quite funny to think that she was aiding and abetting me to smoke pot. I still laugh about that, but good on her for understanding.

Now the first time I had it I hadn’t smoked for a long time and it blew my socks off. Best of all though it killed the pain. Instantly. How good is that. I went from being curled up in a ball to being sprawled on the sofa watching Netflix. No more pain. I was, and still am, a very happy boy.

Oh, it’s not free though. You do have to pay for the script, but it’s similar to street value. Don’t ask me how I know that. Just don’t haha. It’s also an indica strain called Jasmin flower night queen. I was asked by the GP if I would prefer indica or sativa. Madness. Who’d of thought that some areas of medicine would finally recognise marijuana as medicinal. It’s about time.

Since then the gaps between painful episodes have got further and further apart to the point that it seems that the intussusception may have resolved itself. The marijuana relaxes all the nerve endings which may have relaxed the intestines enough to release themselves. I hope so.

Life was looking up again. Time to get back on track.

It didn’t last long though. I got my PET scan results and was told the cancer had got worse. Didn’t need that and I went into a mild form of depression.

I started rethinking my whole treatment plan. Maybe it wasn’t working. What should I do? I was not a happy bunny.

Three weeks later I got a phone call from my haematologist and was told there had been a mistake. After a second opinion I was told it wasn’t getting worse. In fact some of it had improved and I was now classed as stable. Bloody good news that. I was a happy bunny again and had renewed faith in my treatment plan. You can read about both episodes of the scan results on the blog website, if you want to.

Then, in May, I got hit by shigellosis, which is an infection caused by shigella bacteria. This causes severe diarrhoea, vomiting, stomach pain and fever. It’s similar to gastroenteritis but probably worse. I was constantly on the toilet till only liquid was coming out. I did get treated for it and eventually it went away, but I was out of action for about a week. It also meant that I lost more weight. Which was bad news for me.

All the good work I’d done up to April felt like it was all going out of the window. The sailing was getting very stormy and I did not like it. Still I got control of the yacht and steered her towards calmer waters.

Since the events of April and May everything has calmed down a bit. Although not completely. The nature of cancer means that I’m immunocompromised. It’s easier for me to pick up infections, which is annoying. I actually think my immune system is doing remarkably well all things considered, and I love my body for that. My naturopath is also amazing at helping me to overcome anything I pick up, quite quickly. Since May I have been hit by a couple of different viruses which have set me back here and there but nothing as bad as what I described above. I always pick myself up again and push forwards. It’s a long journey but I’ll get there.

On another note I’ve had issues with my haematologist and I’m going to have to look at changing them. This all revolves around her attitude and not booking me in for my next PET scan when she should have. Everything is delayed on that front. But I’m not going to get into that now as that’s a story unto itself for another day.

For now, I’m sitting here enjoying green tea and a storm. I feel good. No illnesses, other than cancer. I’m moving forwards again. Picking myself up with a renewed determination to make a good go of life and get better.

Turn dreams into goals. Turn goals into reality.

Big love to you all,

Jon