I decided against having chemotherapy.

Yes, that is a statement and it is also a choice. A choice that was not lightly made but one I decided I had to do.

I have my reasons, which I’m going to explain to you. I am doing other treatments but I’m going to go into them in a future blog post. Today I just want to talk about chemo, or lack of in my case.

Before I get into that though I want to make it clear that I am not opposed to chemo for others. It is a personal choice for everyone who has cancer what course of action they want to take. It certainly is not my place to judge others for what they choose.

Every person is different and every cancer is different. What works for one may not work for another. It also comes down to what you have on offer from the oncologists, or in my case the haematologist. Likewise it depends what other specialists you have access to and what they can offer. It may also depend on what country you live in and what treatments you can or can’t have in a particular country. Unfortunately it may come down to finances in regards to what treatments you can receive.

Everything is relative to what treatment a person chooses to progress with in regards to their cancer.

One thing no one has a right to do, including me, is to bully others into a treatment they don’t want to do. I’ve read and heard stories of cancer patients who have been harassed and bullied by family, friends, colleagues and even health professionals into trying to do a treatment they don’t want to do. To me that’s not on. Yes, you can have an opinion. Yes, you can be sceptical of treatments. Yes, you can think you want the best for the cancer patient. But at the end of the day it’s their choice and you have to be supportive of that.

I would say it’s doubly the case if you’ve never had cancer because you simply don’t understand what it’s like to have it. For everything people say about I’d do this or that, they really don’t know until it happens to them. I was the same, I had no idea until I got the diagnosis. Both my parents, an aunt and an uncle died from cancer. I thought I’d do this, that or the other if it came to me. Then it did and I had to sit down and rethink my whole thought process into this terrible disease. What was I going to do?

Well I’ve done a lot because I knew I couldn’t sit back and do nothing. Lots of choices had to be made.

So, why didn’t I choose chemo?

Fundamentally because it’s not going to save my life. It can give me a stay of execution but the inevitable will still happen. When I say this I’m also being specific to my type of cancer, mantle cell lymphoma. I’m not going to focus on other cancers because I don’t know enough to feel that I can comment on how effective chemo is for them. All the research I’ve done has been around my particular type of cancer. All the experts I’ve spoken too obviously talk to me about my cancer and what can or can’t be done.

I would say to anyone who has a diagnosis, do your research. Speak to people who know what they are talking about. Read anything that is evidence based that may help you. Get your friends and family to help out if possible. Read about, or talk to cancer survivors and ask them what they did. Find out as much as possible. Then make an informed decision.

Unfortunately chemo can’t cure me of my cancer. It can put it into remission, but it will come back.

There is a big difference between cure and remission.

Cure means that the cancer has gone completely and won’t come back. Which for all of us with cancer is exactly what we want and why we are continually searching for the holy grail of treatments that will do this.

Remission can also be broken down into complete remission and partial remission.

Partial remission means that the cancer has reduced and that the body is responding to treatment. However, although reduced it is still present. This may mean that people can reduce, or have a break from treatment, so long as the cancer doesn’t start to grow again.

Complete remission means that there is no detectable cancer in the body, but it is possible that it could come back. Sometimes after five years of complete remission some doctors will say that you’ve been cured, but that is dependent on the doctor and the type of cancer you have. This is because for a lot of cancers that return they do so within the first five years after treatment.

However some types of cancer may come back much later than the five year period. This means for some people they can never feel they are cured and are in prolonged complete remission. As far as chemo goes this is the prognosis with mantle cell lymphoma.

I asked my haematologist what treatments I could have and all she was able to offer me was heavy duty chemotherapy. I asked whether this would cure my cancer and she replied with a definitive no. The reason for this I was told is that chemo can’t touch cancer stem cells, which are different to ordinary cancer cells. Due to this the cancer will eventually come back, and normally more aggressive.

Healthy stem cells live a lot longer than ordinary healthy cells which grow at a faster rate. When healthy cells become cancerous they can be treated by such treatments as chemotherapy which will destroy them. However, when healthy stem cells mutate into cancer stem cells they are able to survive chemo because chemo can only target fast cycling cells and not slow cycling cells such as cancer stem cells.

This is why the cancer can come back because the cancer stem cells are resistant to the chemo and other such similar treatments. It’s almost as if the cancer stem cells go into hiding during treatment and then sometime later reemerge and say “I’m back”. This is the case with mantle cell lymphoma.

I asked if I did chemo how long could I get in terms of remission. I was told the average lifespan was seven years. If I was lucky maybe ten or eleven and there are a tiny percentage of cases longer than that. So if there is an above average there must also be a below average. To which I was told I may only get a year or two. It all seems very unpredictable until you start the process.

I was also told that the chemo itself could kill me. As well as the cancer having the potential to cross into the bowl and kill me it is also possible for the chemo to do exactly the same thing. The chemo could also cause me to lose a lot more weight on top of what the cancer has already caused which in turn could cause cachexia. I talked about this condition in the Body Image post so have a read of that if you want to know more about that terrible disease.

I had to think long and hard before coming to a decision about whether to have chemo or not. The haematologist gave me three weeks to make up my mind. I discussed it with my immediate family, but the decision was mine at the end of the day.

No chemo.

For all the reasons I’ve written about. As well as them there is the fact that it doesn’t just kill the cancer cells, but it destroys everything good in your body as well. It’s like dropping a nuclear bomb, it doesn’t discriminate. It kills everything, including what’s left of the immune system. It puts some people through hell.

I needed to find another way, which I have done. Will this other way work? That I don’t know yet. But it targets the cancer, boosts my immune and gives me a fighting chance. I’ll talk about it in another post soon. Or maybe several posts as it’s a holistic approach that revolves around treatment, diet, exercise, therapy and spirituality.

I’d like to add that I would like to live a long happy life if possible. Well, I suppose everyone would really. Chemo isn’t, to my mind, going to give me that. I felt chemo was going to give me groundhog day. By that I mean it would put me into remission, but knowing full well the cancer would come back and I would have to go through the emotional roller coaster ride all over again with my family.

Cancer, chemo, remission, repeat. Over again until my body gives in to the inevitable. To be honest I’d rather not go through that, I’d rather get it over and done with the first time. That’s just me. I know everyone has different feelings on that. I’d just rather get it over and done with.

Which is another reason why I’m choosing a different direction in the hope I can be cured and live for a lot longer yet.

When writing this post I’ve tried to keep everything fairly simple in regards to medical definitions and procedures. If you want to know more about stem cells, cancer stem cells, chemotherapy treatments, diagnosis’s, detailed side effects, etc then there is a lot of info on the web. You just have to do your research, or talk to the clever people, like I did.

Please, if you have cancer, don’t base your decision making process from what I write alone. This is my journey and my opinions. It may also be right for you but it may also not be right for you. It’s imperative you do your research before you come to any decisions. Your life may just depend on it.

Likewise if you think I’ve got something wrong then I’m happy to talk about it, because I want to get it right. By that I mean if you think I’ve got some facts wrong. I am happy to talk about choices, too, but it has to be in a constructive, not destructive, way. Like I said earlier I feel everyone has the right to choose what they think is best for them, but constructive discussion is good.

Thank you for taking the time to read this, I appreciate it. For your information when you leave a comment you only have to enter your first name. If you don’t want to enter your surname that’s fine. Also your email won’t be published and it remains confidential.

Do something you enjoy tomorrow. You deserve it.

Cheers, Jon