I hope this series of ‘Cancer-talk’ blogs is as helpful to non-cancer patients as it is to those going through treatment, particularly anyone following in my footsteps and undergoing radiotherapy or chemotherapy prior to an operation.
When I left off in my last blog, I said how deflated I felt; not in having being told what I already knew that I had bowel cancer, but that my operation – pencilled in for before Christmas – was being put back by three or four months.
I had built myself up to be ready to ‘go under the knife’ and now I was hearing that the scans revealed there was something looking rather suspicious near my tumour that they also wanted to deal with.
Go with the flow
And so my cancer treatment was going to be a lot more drawn out than I originally thought, but you quickly learn to ‘go with the flow’ and sing along to ‘Whatever will be, will be…’.
Just before Christmas, I had my first meeting with Dr Hans van der Voet, a very pleasant easy-going Dutchman, who is a bowel cancer specialist in the Radiotherapy Department.
He explained the chemotherapy and radiotherapy was hopefully going to shrink two areas in my rectum that scans had indicated were cancerous. They had to do this prior to any operation. I would need four to six weeks to recover when the chemo and radiotherapy had finished.
Then I would undergo more CT and MRI scans; and, hopefully, my operation would go ahead in April.
Christmas at home, at least!
Well, at least it was going to be a proper Christmas holiday period at home.
I did, however, spend several hours on New Year’s Eve at James Cook University Hospital getting prepped for the start of radiotherapy and chemo on January 5th.
I met Margaret and Pat, who were going to help see me through the ordeal. They described themselves as the Oncology double-act and I saw one or the other at least weekly to discuss side effects and get any drugs or creams they thought might help: a very sore bottom is one of the most obvious side effects to being blasted daily for five weeks with radiation on your bum!
I was given a bucket full of chemo tablets, eight of which I was to take daily alongside the radiotherapy, and a booklet and phone numbers to ring in case of emergencies, plus other pills in case of diarrhoea or severe sickness.
One of the surprises of that New Year’s Eve hospital visit was meeting some of the therapeutic radiographers who were going to administer the radiotherapy.
Tattoos on your bum!
They said they wanted to ‘tattoo’ my bum before the treatment started.
And, I thought I was only calling in to pick up some tablets…
The tattooing is really a few crosses marked in water-resistant ink on your bottom so that the radiotherapy machine knows where to pinpoint its laser beam and ensure the radiation hits exactly the right spots each time.
It was to be a New Year’s Eve I won’t easily forget.
What’s radiotherapy like?
We must have come across as a rather worried lot as we sat in the outpatients’ waiting room that cold crisp day on January 5th waiting to discover what radiotherapy was going to be like.
Radiotherapy treats cancer by using high energy X-rays and is often used alongside other treatment, such as chemotherapy or surgery. It works by destroying cancer cells in the area to be treated. Healthy tissues are also affected, and this causes side effects; but normal cells usually repair themselves. Cancer cells can’t!
If, like me, you get chemotherapy at the same time it is called chemoradiation. All very technical, I know, and a tiny bit frightening.
Susan broke the ice
Fortunately for us lot waiting for our first dose of radiation, we were greeted by Susan, a very jolly receptionist intent on telling us all about the bargains she had picked up in the New Year’s sales.
It quickly broke the ice!
The water treatment
Bowel cancer patients have to go to the toilet and then drink two glasses of water 20 to 30 minutes prior to stripping down to underwear in what appeared to be swimming pool cubicles. You are then be escorted to the linear accelerator machine, as it is called, and asked to lie face down on a fibre bed, which I quickly named ‘the Slab’.
The lights are dimmed and your bottom is exposed. Be ready to be manhandled to get you into the right position. The X-ray beams need to be lined-up exactly with those tattoo markings and the radiographers prefer to move you into the right position rather than you try to shuffle around for them.
A little embarrassing at first
It seems to take an age to get lined-up; and it is a little embarrassing at first to expose your bottom to complete strangers at 9.30am each morning!
It is vital to be exactly in the same position and to stay completely still once you are in the right place. And the reason you emptied your bladder and then filled it up again with two glasses of water is that it, too, needs to be in a similar state each time you have radiotherapy.
The actual treatment only takes a few minutes and it does make a bit of a racket, and once a week photographs are required to see how the treatment is progressing. So, that visit will take a bit longer.
Friendly supportive staff
They always appeared friendly and genuinely interested to hear about any side affects, and, to either reassure me that what I was telling them was normal, or to recommend seeing Pat or Margaret.
I quickly got to know my regular radiotherapy team on first name terms, and even organised some photos of us all with the linear accelerator machine to help illustrate this blog.
There is no doubting you will have some side effects.
I was taking chemo tablets, at the same time, which can always lead to complications.
But, I didn’t suffer any sickness or loss of appetite, although there will be foods and drinks best avoided.
I limited myself to just the odd glass of red wine, mainly at weekends. You get Saturday and Sunday off radiotherapy, although you still have to take the chemo tablets at weekends over the five weeks.
The worse thing for me was an urge to go to the toilet all the time, and having some diarrhoea, although the tablets usually did the trick. You take them just after each episode of diarrhoea rather than at a fixed time during the day.
But apart from a very sore bum, the main side effects were feeling dehydrated, which caused headaches, and having my sleep disrupted. I also suffered from itchy hands and feet and felt very tired towards the end of the treatment, particularly towards the end of the afternoon.
I was surprised that the hair on my head didn’t fall out, or what’s left of it. But it may fall out around your private parts if you are getting bowel cancer treatment. You may also suffer from wind, so the best advice is keep-off green vegetables. I also found keeping off fizzy drinks, including beer, a great help.
Don’t give up
If I can pass on any tips, try to keep on with as normal a life a possible.
I picked up some work from the BBC involving researching and writing a report about the brain drain in Eastern Europe just before my chemoradiation started.
I also wrote a few other pieces for other clients and found this a great way to take my mind off cancer.
One of the worst aspects of being treated in a rather sensitive spot of the human body was being told to keep away from the swimming baths to avoid picking up anything. I used to love my early morning swims.
I also found travel rather restrictive. To be within a few minutes of a loo all the time does rather limit how far you can go!
But with the wonders of technology, you can still stay in touch with the world and I quickly mastered Skype interview techniques.
For me, I was happy to talk to people if they asked directly ‘How I was?’ but I put a blanket ban on talking about my predicament on social media. My family and friends all agreed to make no mention of it until I was ready to tell the wider world.
My strategy for dealing with cancer was to remain calm, and to think positively that it had been caught in time and that something could be done about it.
I didn’t want any sympathy, and I knew I couldn’t cope with too much soppy stuff. It might affect my plans to remain strong, try to keep fit and carry on as far as possible in normal way.
I carried on eating as normal, but did cut the drinking down and even got a liking for peppermint tea.
I’m lucky that I can work from home, as I am self-employed. I am also lucky to have a caring wife and family. My wife, Ann, actually came to the hospital each morning as her redundancy from Teesside Uni started the same day as my radiotherapy treatment.
I’m not sure this is how she expected to start her retirement, but it was great to have company on those early morning hospital trips throughout January and early February.
Now, I’m on the verge of having my operation, I’ve decided to tell my story in tabloid style blog. Hopefully, it will help others through their treatment and reassure them that they are not alone in facing bowel cancer.
See earlier ‘Cancer-talk’ blogs by Nic Mitchell here.
With thanks to Phil Sandford (South Tees NHS Trust) for the photographs