It’s about time I answered this question as I’ve been asked it a number of times.

Firstly though I need to clarify something. I first started writing this post back on March 27th. So the first part of this post is related to that time. I’m not going to change anything as I still feel it’s relevant. I just postponed finishing it because other stuff came up. Life can be like that.

I’ll let you know when I get back to the present, but for now read on. It will all make sense.

There are a lot of cancers out there and mantle cell lymphoma is just one of them. Which is going to lead me off on a tangent briefly. Just bear with me and I’ll get back to the original question in a moment.

First though I would like to address something that has cropped up recently. Good cancers and bad cancers. Yes, there are some people who actually refer to some cancers as good.

Well, in my opinion, there are no good cancers. They are all bad. End of.

I say this because there are some people out there who have had their cancers referred to as a good cancer.

To quote, and believe me this gets said, “If I get cancer I’d want yours because it’s a good cancer. I wouldn’t want one of those bad cancers that other people get.”

That was actually said to a young woman with cancer. I won’t say what cancer because that’s not important. What is important is that she was upset by the comment.

I had a discussion recently with a woman who has had the same cancer three times, and she compared hers to mine. The lady referred to hers as a good cancer which is why she’s a survivor and mine as a bad cancer. She even finished the conversation by saying to me “good luck with your cancer.”

It’s, or was, her cancer so I guess she can call it whatever she likes. But it would of been nice if she’d stopped to think what she was implying by saying hers was good and mine was bad. Also I feel that she trivialised the whole conversation and then walked away from it by saying good luck. After all wtf does “good luck with your cancer” actually mean.

Now maybe I’m being a bit precious but people really need to stop and think what they say. One conversation like that can destroy a persons whole day. Surviving cancer is not about luck, and I know my cancer is bad. It doesn’t have to be underlined by someone not thinking about what they say.

For me I was very polite to her, mainly because I was working in our shop at the time and she was spending money. If it happens again with someone I won’t be so polite. In fact I think I may stop the conversation and say “How is this supposed to make me feel better?”

Still I’m digressing and I could probably write a whole post about what, or what not, to say to people with cancer. In fact I think I will, from my perspective. In the mean time I might put someone else’s take on that on my Facebook page. Keep your eye’s open for that.

To finish this rant off I’ll reiterate my view point. There are no good cancers. All cancers if left untreated could potentially kill you. Yes, some cancers are more aggressive than others. Yes, some cancers have a better prognosis than others and maybe are more treatable. However, even if a cancer has a ninety percent success rate with treatment it also means that there are ten percent where it isn’t successful. For those ten percent that cancer is not good. So be careful what you say.

Ok, deep breath. Rant over. Back to the plot.

What is mantle cell lymphoma?

I’ll try and keep this as user friendly as possible. If you want a more detailed description I recommend visiting Lymphoma Australia and you’ll find the link for it on Info Links page. You could also Google Mantle Cell Lymphoma and a lot of websites will come up. Some are very detailed, some not so and others are very medical oriented. Which means if you don’t understand medical terminology, like me, they’re hard to navigate. Although I’m learning as I go along.

Mantle cell lymphoma (MCL) is a rare form of non-Hodgkin’s lymphoma. It is a form of cancer that affects the lymphatic system and is normally, but not always, aggressive. This means it is fast growing, and that is what I have. Until my next PET scan I won’t know if that has changed or not. So at the time of writing I will assume mine is still aggressive, although I feel a lot better now than I did when I got my diagnosis.

Lymphomas are cancers that involve either B-lymphocyte or T-lymphocyte cells. These cells are white blood cells and to understand MCL you have to know about B-lymphocytes.

B-lymphocytes travel through your lymphatic system to fight infection or disease in any part of your body. They remember infections you have had in the past which help your immune system to recognise these infections if you get them again. This means your body can fight these infections more quickly and effectively. They are made in your bone marrow but usually live in your spleen and your lymph nodes. Although some will reside in your blood and thymus too. Basically they are very clever and they help keep you healthy.

This lymphoma is called MCL because it develops in the mantle zone, the outer edge, of the lymph node. This is where the B-lymphocytes become cancerous. They are abnormal, grow quickly and do not die when they should.

These cancerous B-lymphocytes can cause lymphoma to grow in any part of your body and are spread out rather than grouped together. They look different to healthy B-cells and become larger than they should. These mutated B-cells then get locked into the bone marrow by fat and thrive. Uncontrolled growth of these malignant (cancerous) B-lymphocytes may lead to the enlargement of specific lymph node regions in the body. They can also become involved in other areas such as the spleen and bone marrow as well as spreading to other organs. This can result in life threatening situations.

When I was diagnosed my cancer was largely in the lymph nodes around my stomach, armpits, neck and right elbow. There were also trace elements of it in my bone marrow. Fortunately it was not in my blood or any organs, and I’m hoping it still isn’t.

This leads me on to the symptoms of MCL.

I’ll tell you the symptoms I had first, which lead me to getting tested and subsequently my diagnosis.

Now I’m back in the present moment. Hello. From past to present, I’ll carry on from where I left off back in March.

Right, my symptoms.

I first started noticing changes in my body back in about January 2022. Although it’s possible I was aware of stuff before then, but I just can’t remember.

I should make you aware too of something I was told. Not long after my diagnosis in October 2022 it was explained to me that my cancer may have been developing for up to eight years prior to diagnosis. Eight bloody years. Now it may not have been that long, it’s impossible to tell but it is a possibility. When I think about my lifestyle choices over my life, stress, emotional and personality issues, pathogens and carcinogens etc I’ve been in contact with over the years, it all kind of makes sense.

So be aware, listen to your body and get it checked out if something feels wrong. It’s better to get these diseases under control sooner rather than later.

Firstly I became aware that my immune system wasn’t working to its full potential. Over my life I’ve been pretty good at fighting off illnesses but it was starting to get harder. Getting more colds, struggling to fight off infections and taking longer to recover just wasn’t normal for me.

Around Easter 2022 I got covid. That was a shit show and didn’t do my body any good whatsoever. It was probably the tipping point that sent me into a faster decline health wise.

I developed excessive mucous and post nasal drip. This made it very hard to swallow certain foods. There was so much mucous I just couldn’t swallow certain food stuffs. For example rice and anything small. Supplements and tablets became harder and harder to swallow.

I started losing weight noticeably. For people to comment on my weight loss I knew it wasn’t normal. I wasn’t trying to lose weight but it fell away. Over a period of a few months I went from 85kg to 65kg (13.5st to 10st) (187lb to 143lb). A bit of a worry for someone who was trying to keep it on and not lose it.

Over this timespan I also started growing a lump on the inside of my right elbow. It got to the size of a golfball.

By September 2022 I started getting weaker and my appetite started decreasing. I couldn’t breath properly when laying down and had to sleep sitting upright. Sleep itself was interupted by the constant clearing of phlegm, so much so that I started to get minor panic attacks. I had to sleep in the living room with the TV on sitting up just to be able to calm myself down. Life wasn’t looking too good.

It reached a point where Danielle said enough is enough you need to go and get checked out. I should have done it sooner, but hindsight is a wonderful thing.

The rest, as they say, is history. The ins and outs of the processes I went through to get my diagnosis I’ll save for another day. I just wanted to tell you what my symptoms were.

As well as the symptoms I had, other symptoms can include, but are not limited too: night sweats and fevers, nausea and vomiting or diarrhoea, swollen lymph nodes, belly pain, bloating and heartburn, enlarged liver, tonsils and spleen, pain in your lower back and constant fatigue.

If any of this sets off alarm bells for you, either for yourself or someone else, please go and get checked out. Early intervention may just save yours or someone else’s life.

I’ll finish this post off with some of the potential causes of MCL. Some of these causes may cross over with some other cancers, but I can’t say too much because I don’t know as much about other cancers. I’ll stick to what I know about MCL.

I’ll keep this simple for you because otherwise it can all become a bit overwhelming. If you want to dive deeper into possible causes there is a multitude of information out there. It varies from the we don’t know what the causes are to very detailed scientific information. If you do an internet search don’t be put off by the first few articles you come across.

I’ve looked at a lot of stuff on the internet but I’ve also read informed books, spoken to the people who know what they’re talking about and over the months put it all together.

Now, don’t panic, if you’ve been exposed to something that I list below. It doesn’t mean that you’ll get what I’ve got. If you don’t have any symptoms then you’ll probably be ok. If you do think there might be a problem go and see a medical professional. Get checked out properly. Don’t just rely on what I’m writing. I’m not a professional. I’m just writing about myself and my journey.

In no particular order of importance or relevance, here goes.

Viruses can be a problem long term. In particular the Epstein Barr virus (EBV). This virus causes glandular fever amongst other illnesses. You’ve probably heard of that. EBV is also known as human herpesvirus 4 and is quite common. Most people get it in their lives. In people like myself it can cause long-term complications such as lymphoma cancers and other autoimmune diseases. I would recommend finding out about EBV as there is a lot of information on it.

Heavy metals need to be looked at. High doses of metals in the system are not good for you on the whole. I got tested and found that I had high levels of mercury and cadmium in my system, both of which can be cancer causing agents. I’m working on reducing those levels, but explanations of treatments I’m doing I’ll save for another post.

Chemical pollution is a big one. If you’ve been exposed to any of the following at higher than normal levels, or continuously over a long time period, you may want to go and get a medical check with your GP. Acetone, benzene, toluene, xylene, turpentine, and various alcohols. I’ll include pesticides, herbicides and defoliants here too, for example round-up and agent orange.

Stress is a massive one to watch out for. I was a stress head for a long long time. You may not believe that but it’s true. Ask Danielle, she’ll tell you. I was so stressed I didn’t even know I was stressed. Stress raises the cortisol levels in your body and too much of that is very bad for you. It compromises the immune system and leads to all sorts of medical problems. Reduce stress now! It may save your life.

Diet is very important. What you eat and drink can have a large impact on your health. It affects the microbiome, which is where most of your immune system lives. There is lots of info out there on it and constant new research which shows how important it is to our health. I want to write about it in a little more detail in a later post. For now though do some research and seriously look at what goes into your mouth. No rude jokes ha ha.

Sugar. I know it’s part of diet but I wanted to mention it on its own because it’s that important. Basically cut down on it, cut it out, whatever you feel comfortable to do to minimise the intake of it. Cancer loves sugar, it lives for sugar, it feeds off sugar. Cancer is a sugar junkie.

Research has shown the following can also be a problem and maybe should be looked at. Formaldehyde, dark hair dyes, regular aspartame use, and long-term use of tricyclic anti-depressants.

There is probably more than this and no doubt I have missed something. Feel free to mention it in the comments below if you think I have, but please can it be based on some form of evidence.

Everything I have mentioned above has come after research and testing. Not all researchers agree and not all science agrees. Even different medical papers can contradict each other. That’s the beauty of it though. By continually questioning and researching and challenging we start to get answers that may just save peoples lives. If you can’t question the science it’s not science.

There you have it. The basics about what you need to know about mantle cell lymphoma. What it is, some of the symptoms of it and the possible causes of it.

I hope this has helped to give you a greater understanding about what I’m dealing with. Thank you for reading all of this and trying to take it onboard.

Till next time. Look after yourself, stay healthy and enjoy life.

Love Jon