Hello, how are you? Yes, it’s been awhile. Over three months I think. What’s my excuse? Do I need one? Ha ha, well this is a voluntary blog so maybe I don’t need one. Oh, and that’s me about to go into the imaging department at the hospital to have my PET & CT scans.

I will also say that this is a longer post than some. Maybe a twenty minute read. So leave yourself the time, grab a tea or coffee, put your feet up and off we go.

Added to that I think I’ve re-written parts of this a few times. I’ve been writing this post over the last couple of weeks and I’ve still not finished it. Well I have now, otherwise you wouldn’t be reading it. Why it’s taken so long I’m not sure. Getting a bacterial infection in my stomach and bowel didn’t help. But I’ll spare you the details on that one. Appointments, decisions about treatment, life itself, being lazy, and I could go on. Maybe by writing this it finalises a decision I’ve made about my treatment. Maybe I’ve been delaying that. Still it’s done now, finalised and making full steam ahead. As you’ll find out when you read on.

I find it funny that I say I’ll post regularly and then I don’t. I probably should offer you some kind of explanation. Firstly, and very honestly, I can be lazy and I am easily distracted. I’m working on that though. After seeing my therapist (psychologist) for several months now I’m brave enough to look at my faults. Not that I’ve overcome them all yet as my wife, Danielle, and daughter, Kael, would tell you. But at least I know what they are and it’s a work in progress.

Realistically when I look back on my life I’ve realised that I should have done therapy years ago. The improvements in my mental health have been amazing since starting, especially when it comes to anger, stress, self worth, self love, self understanding, procrastination, distraction and self delusion. To name but a few. It doesn’t mean that I’ve completely eliminated all these issues but they’ve definitely improved.

I’ve delved into childhood, teenage and early adult issues that have been festering away my whole life with some surprising, illuminating and emotionally challenging outcomes. To overcome life’s challenges you have to be prepared to look at them in their entirety. This can be scary and often leads to the release of raw emotion. But once I get through the issue I’m so glad that I looked at it. It’s improved my life tremendously.

To find the light you have to walk through the tunnel of darkness and be prepared to face your internal demons. That though is a whole other story. However, I would recommend therapy of some kind as you can have some amazing results and it improves your life. It’s just a matter of finding the right therapist that you gel with. Don’t wait until you get seriously ill before you do it though. I had to get a cancer diagnosis to give me a kick up the backside. I recommend not waiting for that, although it’s never too late.

I’m getting distracted though, ha ha. That’s my first excuse, kind of.

Secondly, since I wrote my last post, life got busy for awhile. We had to move house, I had hospital, scans and other medical appointments lined up and on top of that we’ve had to make major decisions about what to do with our crystal business. It’s been a busy and time consuming start to the year. However, it’s starting to calm down now and here I am. Back chatting with all of you. Did you miss me? Only answer that if you are going to say ‘yes’, buy me a tea and give me a hug. Only joking, I’m just messing around. Any excuse to put a smile on my face, and yours too hopefully.

Where shall I start?

How about scan results and treatment plans? As that’s probably what you want to know first, so I won’t keep you in suspense. The house move and everything else can come after that.

I know some of you will know my latest scan results but some of you won’t. Even those of you that do may not know the complete picture as the results have been reviewed. From what I’ve posted on social media it appears that a few people think my results were all good news, when in fact they weren’t. That’s not a criticism as some of it is good news, but not all of it. If you’re like me it’s easy to misread, not read everything or take in only what you want to take in. Life’s like that sometimes, we only see what we want to see. It’s also possible that I may have misrepresented the results too. So let’s start by clearing all that up.

I had a PET and CT scan on March 6th. Pumped full of radioactive sugar intravenously and then put into the machine. I don’t actually mind that part. Well I could do without being lit up like a nuclear beacon but it’s part of the process. Until they come up with a better process it’s what you have to do to find out what the cancer is doing. Such is life.

Then I had to wait a week to get the results. That’s the stressful part, although I try to manage that stress. I’ve written about scanxiety in a previous post so I won’t go over it again. But if you’d like to read more about it just click this link and it will take you to the post: Scanxiety

I got the initial results on the 13th March, which were then followed up and reviewed on 18th March.

Again, let’s start with the good news. It hasn’t metastasised, which means it hasn’t spread anywhere new. So it’s still contained in the area it was initially diagnosed in. That means it’s not in any new organs, or anywhere else new. That’s great. My biggest fear was that it would spread. It hasn’t. I’m very happy with that. That means the treatment I have been on up to now has worked at containing it. Which means I am extremely grateful to the clever people who have integrated that treatment plan. It saved my life as mantle cell lymphoma is a very aggressive cancer, and I could already be dead if the treatment hadn’t worked.

Sometimes I forget how aggressive it can be because I’m still alive and enjoying life. Well, trying to enjoy life. Sometimes the bastard reminds me it’s still there. When I look in the mirror and see how skinny I still am because it steals my nutrients, when I get weighed at appointments and see that I’m not putting on weight. Reality check, my weight varies between 58kg and 60kg. It can go up and down. To put it into perspective I was 85kg before the cancer started stealing my fat and muscle. Admittedly not a particularly healthy 85kg, but you get the picture.

Energy wise I have good and bad days. The bad days remind me that I still have a stage 4 cancer. It robs me of energy and slows me down to the point where I don’t leave the house. Sometimes it’s like that when I wake up, especially if I’ve overdone it the day before. Other days I’ll start off ok and then my energy will nose dive in the afternoon or evening. It’s the way of things for me with this cancer.

It reminds me it’s still there when I get sick, for example picking up a virus. I’m a lot more immune compromised due to this cancer, so I’m more vulnerable to other illnesses. I do take prescription supplements to try and help balance this out, and this does work to a certain degree. Without them I would get sick a lot more frequently. I take a lot of stuff to boost my immune system and I’m grateful to have access to it, even if some of it isn’t cheap.

I’ve actually been sick while writing this. I picked up a stomach bug a couple of weeks ago which has stopped me doing much. Painful at times, just annoying at others, but at least it seems to be slowly going thanks to the supplements I’m taking. It definitely helps being able to support my immune system to do what it needs to do. Even if it does take a little longer than normal.

I’ve been told it’s a bacterial infection. I don’t know exactly where I caught this infection but I’m glad it’s on its way out of my system. It seems to be doing the rounds in my part of the world with a lot of people getting sick from it.

In an ideal world all treatments, meds, supplements, etc would be subsidised. That way everyone would have a fighting chance to overcome their illnesses. Unfortunately they’re not, and even though some treatments are free others are very expensive.

But I digress. Back to the results.

I told you the good news, but now I need to give you the other side of the coin.

The bad news is that in some of the areas it is contained in, it has grown. Two lymph nodes have increased in size, the right supraclavicular lymph node and the right internal mammary lymph node. Also there has been disease progression in the stomach and rectum.

What does this mean? Basically the cancer is growing, although contained. At this stage it’s growing slowly so it can still be considered non-aggressive, and stable because it’s contained. However, this could change overnight and it could become unstable and aggressive at the drop of a hat. Mantle cell lymphoma is an extremely intelligent and aggressive cancer. If I hadn’t had treatment of any sort I’d probably be dead by now. I quite possibly wouldn’t have lasted a year from my initial diagnosis in October 2022. That’s a sobering thought that a lot of you could have attended my funeral last year. Another reality check.

However, due to the initial success of my treatment plan I’m still here. Living life and right now making decisions about my future treatment plan.

Actually I might amend that. I’ve made a decision about what I’m going to do, and the wheels are in motion. I’ve decided to do what is called soft chemotherapy. If any chemo can be considered soft, but that’s what the specialists call it.

What?! I hear some of you call. He said he’d never do chemo. And when I wrote the post ‘What? No Chemo?’ back in March 2023 I meant it. Life was different then and to be fair I still stand by a lot of what I said in that post. I still don’t want to do heavy duty chemo and a stem cell transplant because I simply don’t think my body, right now, would survive it. Also, the specialists aren’t offering it anymore. Maybe for similar reasons. If you want to read that post you can find it here: What? No Chemo?

In the above post you’ll also find out the difference between normal cancer cells and cancer stem cells. They operate differently. Chemo can kill normal cancer cells but not cancer stem cells. So when you have chemo, with mantle cell lymphoma, it can put you in full remission but not completely cure you. This is because chemo can’t get at the cancer stem cells. That hasn’t changed, as my haematologist/oncologist was very quick to point out.

However, I’ve had to way up the pros and cons of having or not having soft chemo. On the positive side it could get me into complete remission. On the negative side it could kill me. That’s the two extremes. Either way I’m playing a game of Russian roulette. Google it if you don’t know what that means. If I put it in a less harsh way I’m stuck between a rock and a hard place.

Let me explain all this a little more in-depth.

If I don’t do the chemo I run the risk of the cancer killing me. It is possibly becoming resistant to the treatment I’m currently doing, hence the progression. If this is the case and that continues then there are various possibilities. It could metastasise, which means it would spread to other parts of my body. That could be the beginning of the end. It could also block or perforate my bowel, which eventually would kill me. At this stage there is no time frame on that. It could be months or it could be years. I could take that chance, in the hope new treatments appear in the future. That’s one risk. Keep doing what I’m doing and hope for the best. It could work, but deep down inside I have my doubts. Sometimes you have to listen to your intuition. You have it for a reason.

If I do the chemo it could also kill me. Again, bowel perforation. That’s the major side effect. There are others but that’s the riskiest one. That’s because the chemo could almost work too well, kill the cancer in the lining of my bowel quickly and in the process tear a hole in the bowel lining. That would be extremely painful and possibly catastrophic. You only have to Google bowel perforation to have an idea of what that involves. You can get sepsis from it and that is very very bad.

So, like I said, it’s time for a game of Russian roulette.

I’m choosing to do the soft chemo. At this stage it feels to me the lesser of evils in the risk stakes. Unless someone comes up with a better course of action before I begin it. That though is unlikely.

It’s been a hard decision to make as I never wanted to do chemo. But I now feel it’s for the best as I explained before. Life really is a strange trip sometimes.

After a discussion with two specialists they felt there was a very good chance that it would work for me. This is because it’s still contained and hasn’t grown out of control. It will give me a much better chance to attack it now than to wait until it possibly spreads. I agree with them. I sat with this for awhile, meditated, let go of the fear, told my mind to shut up and just listened to me. No one else, just the deepest part of myself. I trust my intuition and it says go for it, it’s the best chance I have. Will it work? Well that I won’t know until I try it. Correction. I’ll make it fucking work! I’ve always believed I can become cancer free and I still believe I can be. I’ve kept the bugger at bay this long so now it’s time to go to the next level. Time to get it into full remission. If integrating chemo into my treatment plan is part of the process then so be it. We’re all allowed to change our minds. What I intended a year ago has now shifted. That’s life. You have to evolve. You have to keep moving forwards and sometimes that means changing your mind, even your belief systems sometimes. It’s ok to do that. As long as you’re completely comfortable and secure within yourself about the choices you make then it doesn’t matter what anyone else thinks or believes. That’s their life and yours is yours.

The chemo treatment cycle will last nearly six months. It is two days, repeated every 28 days and there are six cycles. It consists of the drugs rituximab and bendamustine. Both are given by drip into the vein. Bendamustine is given on days 1 and 2 and takes about an hour. Rituximab is given on day 1. The first cycle is about 8 hours, and the subsequent cycles are about 4 to 6 hours. That will be fun sat in a hospital chair/bed for that long being shot up with chemo drugs. The first cycle is 8 hours because it has to be done slowly to see if there will be any side effects or allergic reactions. It’s also the one that will hit me the hardest apparently. And if the bowel is perforated it will most likely be on that cycle. So the first cycle is the big one, but I intend to survive it.

After the second or third cycle I will be scanned again to see if the chemo is working. If it is we keep going with the subsequent cycles. If not they pull the plug and we try other treatments. I won’t go into those treatments here because they won’t do them until I’ve had the chemo first. My thoughts on that could fill a small post. I may or may not write it. Right now I’m just focused on the chemo and building my body to withstand it.

The chemo’s not far away, I have dates. Firstly, I have a meeting with the specialists at the hospital on May 1st to discuss the whole process, ask questions etc. Then the next day, Thursday May 2nd, I have my first chemo session. Which, as I’m writing right now, is just over a week away. I’m not looking forward to it but I know I need to do it.

I’m preparing myself mentally and physically. Being prepared as best I can for this treatment.

Physically I have to get motivated. Something I’m not very good at right now, but I will do it. I have to do it. Build some muscle, get my body moving and get some oxygen deep into my lungs. Cancer is not a huge fan of oxygen and often thrives in a low oxygen environment. There’s also a lot of research out there to show that exercise helps the chemo work better. Read this article to find out more: MD Anderson: Exercise during cancer treatment

I need to make sure my diet is up to scratch. Lots of healthy nutritious food as much as possible. I am slack sometimes with this, as we all are, but the effort has to start now. Danielle and Kael remind me of this and that’s a good thing, even if I do get grumpy about it sometimes.

Thirdly I had to find out what parts of my current treatment plan were compatible with chemo and will make it work better and protect my healthy cells. I had a Zoom appointment recently with biochemist and cancer specialist Chris Woollams, from Cancer Active to help me with all of this. I did this when I was first diagnosed and he helped immensely. With my naturopath he helped put my initial treatment plan into action. One of the reasons I’m still alive. However, he also builds integrative programs around chemo to help the whole process. You can Google him if you want to check his credentials. It wasn’t a cheap appointment, but if it saves my life it’s worth the cost. Unfortunately private treatments, consults, etc are never cheap. But sometimes you have no choice and you just try and find the money to do it. If the public system provided this help then life would be a lot better for everyone. But, in Australia, it doesn’t.

I know this makes me sound a little cynical but a lot of people miss out on a lot of help because it is simply unaffordable. That is not a criticism of the people who work in the public system because their hands are tied. They can only offer what they’re allowed to offer. It’s more a criticism of successive governments and government institutions that determine what is and what isn’t available to the general public through the health care system.

The only way I’ve been able to afford what I have is because of all the amazing people who have donated money to us. Whether it’s been personally or through the Go Fund Me campaign. I will forever be grateful to all family, friends, acquaintances and strangers who have helped out. You all rock!

I probably should say what is contained in my personal integrative program, from Chris Woollams, to help the whole chemo process. But right now I don’t have the brain power to go through all of that. Plenty of time to give you a more detailed insight into it all in a future post. After all this whole chemo process will last six months.

So, there you have it. The basics of my scan results and a concept of where my treatment will head in the near future.

It certainly is a trip this whole cancer journey. The ups and downs, how life changes. And it does change, daily. I guess it’s changing in every moment, the whole world over. Just when you think you’ve got it all worked out, bam, it changes. That’s the beauty and tragedy of it. Which is why we have to try and live every moment of it. Even if at times it’s just being a couch potato. Be aware that you are and enjoy it, because it won’t last forever.

Speaking of change, we moved house. That was all a bit stressful as for a long time we didn’t know where we were going to move too. We had to move out because our landlady wanted to move in and she wasn’t exactly too concerned, or sympathetic, about our circumstances. I’ll save that for another conversation though.

The Gold Coast is an incredibly hard place to find a rental these days. It’s expensive and supply doesn’t meet demand. It has its highest levels of homelessness in its history. Even if you can afford the prices you are in a queue or lottery as to whether you can get a place or not.

So we moved off the Gold Coast, thanks to Danielle’s eldest sister. Amazingly she offered us, at her house, the downstairs granny flat, unit, bedsit, call it what you want. It’s still a work in progress but I am so grateful to have a roof over our heads during this chaotic time. Funny how life works out sometimes.

Members of Danielle’s family helped us to move so a big shout out to all of them. We couldn’t have done it without you all. Thank you.

If you’re interested in where we’re living now, it’s a suburb called Edens Landing. You can look it up on Google. We’re much closer to Brisbane now, which I don’t mind, and it’s more multi-cultural than the Gold Coast too. A lot more bogans as well, and maybe that’s a good thing. If you’re not an Aussie then just Google ‘bogan’ and you’ll find out what that means.

Finally, after a lot of agonising, we’ve decided to close our crystal shop. It’s not making ends meet anymore due to a few different factors. I withdrew my energy from it not long after my diagnosis as I was focussing on my health. Danielle has carried on bravely working continuously on her own, although Kael helps out where she can. However, over the last year it has slowly declined and all good things come to am end. The current economic climate doesn’t help either, with a lot of businesses suffering.

We opened the shop on the 2.2.2022 and we close it on 25.5.2024. I’m sure people who do numerology will make something of those numbers. In fact, if you do, you can always post a comment below about the magic of those dates.

Danielle had to make the ultimate decision and it wasn’t easy for her. I’m so proud of her bravery in regards to the shop, my health, being a mum and holding our family unit together, not to mention running a business single handedly. Thank you Danielle. You’re the best!

Even though the shop is closing the business will keep going for now. Maybe as a pop-up-shop, maybe online, maybe I don’t know. Many conversations will be had between Danielle and myself on that one.

If you’re a local she’s having a closing down sale with up-to 40% off. In fact you don’t have to be local as she can ship items. Maybe check out her Instagram to see what’s going on here: Earthly Essentials

That’s it, that’s your lot. As Bugs once said “That’s all folks.”

Now you know a lot more about my recent journey than you did 30 minutes ago. I probably won’t write anything again, blog wise, until after my first chemo session. Once I’ve recovered from it I’ll let you all know how I’m going with the whole process. I may appear on Instagram before then, and possibly Facebook, but I can’t promise. Just keep your eyes open.

If you’d like to leave a comment that would be cool. I love reading them. You only need to give your first name and your email isn’t published. Your privacy is respected.

I’ll see you all on the other side of chemo. Till then, take care and enjoy life. Do something special next time you have a day off. Go on, I dare you.

All my love, Jon