Chemotherapy, or chemo, is a reality, sadly, for a lot of people. Myself included.

What I’m about to write is purely from my perspective about the process. Everyone is an individual and it can effect people in different ways. There are a lot of different cancers and, therefore, there are a lot of different chemo drugs. How often people have to have it varies too. It’s not all doom and gloom either, so please read on.

The experiences I’m having may have similarities with others but they may also vary greatly. I don’t want to do a disservice to others who may be having it harder, or easier, than me so please understand this is just about my journey. I’m not speaking for everyone who has had cancer and chemotherapy.

If you want to know why I chose to do chemo please read my previous post: Scans, Treatments, Life. How Does It All Come Together? Just click on it and it will take you there.

As you can see from the photo, that’s me in the hospital recliner having one of my rounds of chemo. It may look painful to some but it isn’t. Well, that’s not strictly true. It can be painful when they try and put the cannula into one of my veins. I’ll explain why that is below. But once it’s in I find the rest of the process goes relatively smoothly. Again, I’m only speaking from my perspective and I don’t want to detract from peoples experiences who have it much harder than me.

I’m going to try and break this post down into different sections about the whole process. Not sure in what order so I’ll just take it as it comes. I hope that’s ok with you but it’s the only way I can get my head around it to write about it. I will say that if I miss anything or you don’t understand something then please ask a question, or two, in the comments section at the end of the post. Equally, if you’ve had an experience with chemo, or someone you know has, and you want to comment on yours or their experience, again, please use the comments section.

I’m going to start with the drugs. What they are, what they do, how they are administered and potential side effects. The two main drugs I have are Rituximab and Bendamustine.

Rituximab is a form of immunotherapy and is classed a therapeutic monoclonal antibody. Yes, I know what you’re going to ask: ‘What is a monoclonal antibody?’ Which is a good question and I’ll give you a short answer. If you want to know more then just Google it.

A monoclonal antibody is produced in a laboratory and is a molecule that is an antibody substitute. It can mimic, restore, modify or enhance the bodies immune system that attacks unwanted cells, such as cancer cells.

Rituximab specifically, in regards to non-Hodgkin’s lymphoma, targets a protein called CD20 found on the surface of lymphoma cells. This antibody sticks to all the CD20 proteins that it finds. The immune system then finds the marked cells and kills them. All fully developed B cells have CD20 on them, including B lymphoma cells. Early B cells don’t have the CD20 protein and so aren’t killed. Which means they can produce new healthy B cells.

This drug can prove to be very effective but it also comes with possible risks in the form of side effects. The first time it is administered it is done very slowly because of the potential reactions a person can have. I think my first one was five to six hours. My subsequent ones are now two to three hours. The nurses told me that 60% of people who receive it have an adverse infusion reaction. I’ve decided that I’m going to be in the other 40% and so far so good. I don’t want to tempt fate but after three rounds of having it I’ve been perfectly fine. I’ve seen in the hospital, first hand, what a reaction is and it’s not pretty. Fortunately the nurses were amazing and reacted so fast to the poor lady having the adverse reaction. They saved her and she was ok but that was after she went red as a beetroot and struggled to breath. These are the risks you face with this form of medication.

Other side effects can also occur with this drug from mild to severe. Mild ones are decreased lymphocyte count, neutrophil white blood cells and platelets. Increased infections; bacterial, viral and fungal. Possible loss of appetite and weight loss, anxiety, agitation and drowsiness.

There are more severe ones which I’ll name but I’m also going to give you homework. If you want to know what they are then you’ll have to Google them because if I explain them all I’ll be writing my own medical paper and this post will go on for ever. They are: cytokine release syndrome, tumour lysis syndrome, severe allergic reaction, deterioration in cognitive functions, congestive heart failure, and chronic inflammatory reaction with breathlessness.

There are more but as I said do your homework to get the details.

Fortunately the only effects I’ve suffered are decreased lymphocyte count and white blood cell count. These are common but still have to be monitored. I have a blood test before each round because if the white blood cells are too low I can’t have the drugs. This would mean having to have an injection to boost the white blood cells which I would then also have to give myself afterwards at home too. The injection is done in the same way as a diabetic would give themselves an insulin injection.

I haven’t had to do that yet which I’m very happy about. I take turkey tail extract, which is a medicinal mushroom, as it helps to protect the white bold cells.

I have a whole integrative approach to chemotherapy but that will need to be explained in another post as I want to do it justice. It will be too long if I write about it in this post. So look out for that one in the future.

That’s a very basic explanation of rituximab. Now onto the chemotherapy drug itself.

Bendamustine is the chemo drug that I have. It is also administered intravenously and takes about an hour to an hour and thirty minutes. Nowhere near as long as the rituximab thank goodness.

It belongs to a group of cancer drugs known as alkylating agents. It interferes with the growth of cancer cells which are eventually destroyed by the immune system. Bendamustine chemically bonds to the strands of DNA and also forms links across the two strands of the DNA helix. This makes it much harder for cancer cells to reproduce and grow.

There are side effects with this drug too. Also from mild to severe. Mild can include fever, chills, fatigue, muscle aches, nausea, vomiting, mouth sores, diarrhoea, constipation, minor colds, back pain, sleep disturbance, anxiety, depression, reduced potassium and magnesium blood levels, dry skin, hair loss and rashes. To name but a few. Not much then, he said a little sarcastically.

More seriously it can cause a decline in blood cell numbers and this is very common. Which is why a blood test is always done before the next round of chemo.

It can cause tumour lysis syndrome, severe persistent diarrhoea, and possible irritation of the IV vein where it’s administered. In rare cases it can cause a severe allergic reaction and possible anaphylactic shock. In the long term there is a small risk of acute myeloid leukaemia, and some other cancers, for some years after using bendamustine. Oh the joy of getting rid of one cancer only to develop another one later in life. I’m determined that’s not going to happen to me.

The side effects that have effected me are constipation, fatigue, sleep disturbance, dry skin, and brain fog, also known as chemo brain.

The constipation is fixed by a natural laxative and pear juice. If you want to go then drink pear juice regularly. It works wonders.

The fatigue you just have to ride out and medical marijuana works amazingly to counteract sleep disturbance. It’s fun too, he said with a cheeky smile on his face.

Dry skin is fixed with a good moisturiser, of which we have many in our house hold. I have a wife and teenage daughter so I’m never going to run short on moisturiser. Hi Danielle, hi Kael.

Chemo brain effects thinking and memory problems. This can include memory loss, confusion, disorganised thinking, trouble concentrating and making decisions. Now some people may say that I suffered from these before I started chemo, ha ha. But I can assure you that’s not true. Honestly. I have had a few moments though. Recently I was convinced Danielle was at a certain shopping centre (mall) to the point I was telling her family where she was and what she was doing. I was completely wrong. She was at different shops not doing what I thought she was doing. Which is harmless enough and funny for all concerned. But it is a little disconcerting when you realise you’ve been living in some kind of alternate reality only to realise you are the only one living in it. Still an old friend told me to milk it for as long as possible as it’s a great excuse for getting things wrong or just forgetting to do stuff. Hm, he has a point. I’m still managing to write this though, or am I?

I do take a supplement called acetyl-L-carnitine which helps to combat it. But again I’ll save the details on that for another post.

That’s the two main drugs that I have. Before I have them I’m given an intravenous steroid which helps smooth the whole process and prevents some of the nausea side effects. One side effect of this steroid is constipation and another is that it can increase sugar levels in the body. Any form of sugar increase is not ideal as cancer feeds off sugar. Which is why I take berberine to counter act this but again that’s for another post.

Then there are the drugs I have to take at home, that the hospital pharmacy provides. Not for free I might add but such is life. They include an anti-viral tablet that I have to take everyday, an antibiotic which has to be taken twice a week and anti-nausea drugs if needed. Fortunately though I haven’t had to take the nausea meds.

The other main side effect of the whole process is the lowering of the immune system. This is to the point that the body won’t give a normal response to getting an infection. In fact other than a temperature it won’t give any response. So I could get the flu for example and not show any signs. The nurses instructed me that I should take my temperature several times a day and if it hits 38ºc (100ºf) I have to go to hospital straight away. Fortunately that hasn’t happened. My body is still functioning to a level where there are forms of recognition of illness. For example a runny nose.

It also means that I have to be careful going out or being around other people. I’m lucky in that family are very aware of this and avoid me, as much as possible, if they get sick. If I go out I avoid crowds and if I can’t avoid I wear a mask. This means that at times I may seem antisocial but it’s nothing personal. I just can’t risk getting seriously ill.

In some ways my body has a chance to recover in-between chemo rounds as I have it every twenty eight days. I have it on two consecutive days, always a Thursday and Friday. Wednesday I visit the specialist and have my bloods taken. On the Thursday I have the rituximab and the bendamustine then on Friday another dose of bendamustine.

It normally hits me Friday night, sometimes like a ton of bricks. The weekend is then a blur and the following week can be a bit of a write-off. It’s all very hard to describe. One analogy I can use is from my hedonistic younger years. If you’ve ever taken party drugs you’ll know what I mean. It’s like having a massive dirty come down without having had the fun. Or being wiped out by a hangover, albeit without the headache. Another analogy would be like being hit by a heavy flu and not being able to do much because of it. I think you must be getting the gist of it. On some days I’ve just had to crash with no rhyme or reason. To put it bluntly and crudely it fucks you up, fucks you over and spits you out. If I wasn’t doing my integrative program I wander how much worse it could be.

After the first week or so I start to come good and find I have energy to engage the world again, although I still have to remember that I’m severely immune compromised. I love the third week because I feel completely normal. Then we get to the fourth week, and guess what, it’s time to start all over again. Back on the chemo roller coaster. I feel blessed that I have a small window of recovery from the process. I can’t imagine having to do it every fortnight or worse yet every week. Some people do and I can’t get my head around that. I’d be permanently buggered if I had to have chemo every week. Although this process can be life saving it can also be incredibly hard to get through. It works for some but not for all. It’s a sobering thought that many people go through this only for it not to work, and in some worst case scenarios the chemo kills people. It can and does happen. Therefore I’m extremely grateful to be alive and kicking still, and having no major side effects.

Mentally and emotionally it can take its toll. You get on this cycle of knowing exactly when it’s going to happen. It’s like your whole life is mapped out. Have chemo, get obliterated, feel crap, start feeling good, feel really good, have chemo, feel crap etc etc etc. Your mind starts focussing on the whole process and you have to be very careful it doesn’t get the better of you. I’ve been training myself to not get caught up in the routine of it. This is because it’s easy to focus on the shit part of it. The shit part may be different for different people.

I’m not too worried about the fatigue etc straight after the chemo. I know I’m going to be written-off for the first week or so, and I can deal with that. I know I can’t do much about that so I don’t worry about it. I can watch movies or binge a tv series. Play video games, listen to music or read a book. And in some cases just sleep. It’s the reality of the process.

No, what gets me now is having the cannula put in. I’ve never had an issue with having my bloods taken, and still don’t. I didn’t have an issue with the cannula before my first round of chemo as it all went in very smoothly. But the second and third time it was not so easy. Blood is slightly alkaline but the chemo is acidic. As a nurse informed me, because of this, it basically burns the veins from the inside. This makes it harder to get a cannula in. They have to go in a certain way for chemo and as the veins get damaged, it gets harder. The last couple of times it’s taken a few goes in different veins and I have a nice bruise on my arm from one of the failed attempts. I don’t blame anyone, it’s just the nature of the beast. I still have another three rounds of chemo to go but I’m determined that the cannula’s will work.

The other option is to have a central venous access device fitted. This stays permanently fitted to you for the duration of the chemo process. It can be a skin-tunnelled catheter, also known as a Hickman line, a peripherally inserted central catheter known as a PICC, or an implanted port. If I’m unable to have the cannula anymore I’ll be having a PICC inserted. Hopefully this doesn’t happen. Again do your homework using the Google teacher to find out how these catheters work.

Oh, and my cannula stays in over night from the Thursday to the Friday so that it doesn’t have to be redone. It gets bandaged up to keep it clean and safe. But it is a little uncomfortable having a needle stuck in your arm for twenty four hours. Better that though than having to have it inserted two days in a row.

So that’s my main anxiety with this whole process. I’m sure it’s different for other people, as everyone will have their own fears and insecurities when going through this chemo process. However, I remain focused on getting better and if that is the worst that I have to face then I’m doing alright. I know for a fact that it is much harder for some other people. It’s worth remembering that there are young children who go through this and they are incredibly brave. The bravest of the brave and my heart goes out to them.

The other side of the coin is the friends and relatives who have to watch their loved ones go through this process. It must be incredibly hard when you’re the loved one watching on. Having lost both my parents to cancer I do have some understanding of that, and now I’m seeing it from the other side.

I am so proud of Danielle and Kael who have helped me through all of this. It would have been so much harder without them. Until recently Danielle has had to work in our business 24/7, until the decision was reached to close the shop part of it. It has been an incredibly stressful time for her but she has never failed to be at my side and keep me supported. My daughter Kael is amazing. She was 15 when I was diagnosed with my cancer and that was so hard for her. She’s now 17 and in her last year of school. I’ve watched her grow over the last couple of years and I’ve marvelled at how mature she is. I’m so proud of her because I know the last couple of years have taken their toll on her. She deserves the best from life and I’m sure with her determination she will get it. I love you Danielle and Kael. You’re the best.

Members of Danielle’s extended family have been great and so supportive. From putting a roof over our heads, too checking in on me and basically being there for us when we’ve needed them. It helps immensely to have this support. Thank you. You are all brilliant.

My family back in England have been fantastic too. Checking in on me, calling me and making sure I’m not forgotten. Thanks you lot, I love you so much.

Thanks to all the friends who have remained in contact, called me, visited me, messaged me and basically made sure I’m still supported. Friendship is wonderful and you’re all amazing. Thank you for being my friend.

I’d also like to thank those who I don’t know that well but who have supported myself, Danielle or Kael in one way or another. Thank you for being there. You’re great too.

All support, large or small, is so gratefully accepted. I just wish everyone who is going through this journey got the same support that I do. The cancer journey can be a lonely process sometimes but it is made a lot more bearable when you are loved and supported.

If you are on this journey and feel alone and unsupported I feel for you. There are organisations out there that can help, in many different countries. It may be worth asking, where you get your treatment, what help is available. Or else Google can give you a list of organisations to contact that can offer support. There’s Facebook groups, etc that you can join. It will give you the opportunity to talk to people who will understand this whole shit show that’s cancer and chemotherapy. Reach out, don’t do this alone.

On that note I’m going to leave it there. Otherwise this will get really long, and it’s long enough already. So much for a short post but I wanted to do this one justice and not leave anything out. Although I’m sure I’ve probably missed a thing or two.

Feel free to mention anything in the comments below. Things I’ve forgotten, questions, your own experiences, etc. It will ask you for a name and email address, but you only need to give your first name. Or just make one up if you wish to remain anonymous. Also, your email won’t be published. It’s kept private.

Thank you for taking the time to read this. Please share it with anyone you feel would like to read it too or who would benefit from it. Sharing is caring and we all need a bit of caring in our lives.

One last thing, I get my scan results tomorrow to see how well this chemo process is working. And I know it’s working because I can feel the changes within my body, and I’ve started putting on weight again which I thought would never happen. But it will be interesting to see how well it’s working.

Tomorrow is also specialist and bloods day. Then this Thursday and Friday are chemo days, and the roller coaster starts again.

Till next time, big love to you all.

Jon