When I set off on this little journey to explore what the side effects of the chemotherapy actually do to you physically, across, well, quite frankly, more parts of you than you might have anticipated, certainly before being diagnosed, and then you find yourself hurled head first into the extraordinary world of becoming overnight a cancer patient and everything that goes with it. It is very important by the way, to be aware that the side effects don’t just impact on the physical side, oh no, it is in my experience equally vital to get your mind and spirit right when you start to play the chess game that is coping with the consequences of having huge cocktails of strong chemicals that are regularly inserted inside you.
Surprisingly, I have taken zero interest in finding out exactly what God knows awfulness is injected, swallowed, inserted, etc. Some folks love to know everything about all of it. I just took the view that I trust in Dr Peter implicitly and the whole team. If they tell me to stand on my head, my reply is how long for? In my mind, knowing good, bad, or indifferent, is not going to make any difference to anything. So, in my head it is an ongoing, complex game of chess. Cancer moves a bishop, I take the medication given to me, it’s as simple as that.
There are however some useful lessons that I have learned from my own experience.
First, under no circumstances, be too British; a stiff upper lip will do you no good (not yet a side effect as far as I know by the way). No, no, no, at the first sign of something painful or odd, or uncomfortable, start telling the nurses, don’t go down the old oh dear I know that they are busy, and I do not want to be a pest malarkey. Absolutely flag anything as soon as you start to notice.
I learned the hard way and today I am a reformed squealer of the highest order. Happy to squeal like a stuck pig as they say. Keeping quiet, and suffering in silence serves no benefit. The nurses actively encourage you tell them as soon as possible. It makes their lives easier, there is nothing that they have not seen before, they know the symptoms and they know the cures.
I made the mistake when my skin started to peel off, of thinking that if I leave it alone it will go away. Well, it did go away, it spilt off my face and onto my pillow. It was disgusting, no one wants to wake up with blood stains all over their pillow, and a large whole where your cheek used to live. Now, I have never had leprosy but when you skin starts to change from a normal colour to a small spot, and then a large boil, and then it erupts, it is no joke. The pain is bearable, but it spread very quickly from my chest, to my back, my arms and my legs then my face and then my scalp. Once I sent the photos of my awfulness to the nurses I was summoned immediately to the dermatology department of Warwick hospital, where a team of 4 doctors were waiting for me, to offer salvation in the shape of 5 gel type paraffin steroid creams.
Anyway, I digress, this third part is going to deal with a sensitive subject, namely the effects of cancers side effects on the bottom.
It is impossible to talk about bowel cancer without doffing one’s cap to what it does to your posterior. The symptoms of bowel cancer are well documented, loose stools, blood in your poo, weight loss, fatigue. Yes, I had all that, the full set as it were. What is even worse and not generally talked about, is the most awful smells that accompany loose stools and blood in your poo. Many was the time when I felt compelled to beat a hasty retreat after visiting the facilities, especially in public places.
Too often would I hear the voice of some poor hapless soul who walked straight I into one of my stink bomb deposits. Never look back, and be firm of stride was the order of the day. Of course we all like to think that we are made of sugar and spice and all things nice, but we are not. We eat, we produce waste, poo is part of it. There is such a thing as the Bristol poo chart, it is a proper study of faeces, their unique shape, size, colour, etc . Not a bedside read to be honest, but when you start bleeding a lot you start to research these things, The other thing is the frequency and speed that you need to make sure that you can use the facility in time.
Before my second massive operation, the cancer had spread to my rectal stump. My first reaction was to laugh as my brain visualised a particularly unpleasant cricket match, however, I very soon stopped laughing, just before my operation I was going to the loo all the time, morning noon and night. In fact, I kept records. I had a notebook next to the crapper and I have kept my records to this day. In one day alone over 24 hours, I went 63 times. I could not leave the flat and I got to be quicker than Usain Bolt, I had to be. Of course you never sleep, just bursts now and again.
Most of the time it was a horrid, slimy, slurry, that needed dealing with. Indeed, I started to wear Tena pants not unlike Bridget Jones, come to think of it. Of course, looking back I was actually dying, quite literally slipping away with my very life essence gliding gently into my Tena pants, hour by hour day by day.
I recall one memory, it was about 3am. I had tip-toed my way into the bathroom to drop the boys in the pool as they say, when I remembered being on a bus, the panels on the bus were full of social messages, like: Do You have Blood in your poo? Do you have a sexually transmitted disease? Are you a drug user? Need the Samaritans?. Honest to God, if you had never caught a bus before you would jump off as soon as you could. Looking at the appalling catalogue of terrible things that clearly bus passengers have to deal with on a daily basis. I still, to this day, do not know why but I started singing to myself: the blood in my poo is all mine, all mine, the blood in the poo is all mine. This was sung to a tune made famous by football legend and proud Geordie, Paul Gascoigne who released a pop single called “The Fog on The Tyne Is All Mine”. For some deranged reason I found this incredibly funny and actually ended up crying with laughter.
So, after my two operations, my bottom was handed a P45 and sent off into early retirement, replaced by a stoma bag, a little adhesive plastic receptacle that you fit over a part of your bowel which has been pushed out of you and sits like a little raspberry. You have to learn to love your stoma it takes time, but the golden rule is always respect it, and care for it. Occasionally it will let you down and those occasions are gross and horrible. It transforms itself into a poo hydrant. I was amazed at just how far and high it can distribute the unpleasantness. It reminded me of that lake in Geneva, with a huge fountain. All you can do is ride the storm, and then when it calms down, get straight in the shower. On the positive, you do lose a lot of weight very quickly, however, it is most certainly not a spectator sport, let me tell you.
Other side effects of the chemo from the bottom down are varicose veins which appeared on my left leg. When I realised what it was, I thought that maybe it was time that I joined the Woman’s Institute and took up jam making and knitting.
Other joys include large lacerations that appear on the feet, in the form of splits and cuts. These also appear on the fingers, as ever, however, the cure is there in the shape of glue. You simply stick the open wounds back together again, and get on with it. Of course, as a Karate teacher this is not helpful, so occasionally special trainers have to be worn. Funnily enough, toe nails also change and need constant management. I also found that on the nail of my big right toe a black line appeared right in the middle, apparently cancer patients get this, news to me, but there you go.
Well, my dear chums, I feel that I have reached the end. There are other symptoms that appear, certainly when you first start chemo. These include a tingling in your fingers and toes. I have long since lost this, although a song by Wet, Wet, Wet, always reminds me with the classic line “I feel it in my fingers, I feel it in my toes”. This can result in numbness and not being able to do buttons up, etc.
But, in conclusion, the lesson is a simple one: no matter what the chemo does, no matter what the side effects are, the treatments do work. I think back to September 2018, when my world imploded with a single phone call, saying “You have cancer, you are seriously ill, they are waiting for you at Warwick hospital right now.”
Boom. That’s a game changer, but here I am nearly 4 years on with chemo dose number 70, waiting for me on Wednesday. Bring it on. I can and I will deal with it, as I will dose number 100, 200 or 300.
The point is the power of the human spirit is stronger than you know, believe in yourself and stay focused on living life to the full, it is too precious to let it go.