When in the Hormone Forest...
(2017)
Here I am, sitting in a busy, but cold, supermarket cafe, gazing into my laptop, stirring a weak brew of decaf tea, trying to break up a double kit kat, when this elderly chap leans over my shoulder, holds out his hand and begins to recall my appearance in the BBC programme called 'The Cancer Hospital'.
This was a programme highlighting various men in various degrees of suffering from prostate cancer. The production crew followed our lives and treatment during the course of a year while attending the world famous Beatson Hospital in Glasgow.
The gentleman began to tell me he was diagnosed with prostate cancer some five years ago when his doctor became suspicious of his symptoms. His main symptom was a sore back. The doctor felt that this backache was not a symptom of normal wear and tear, so he decided to take a simple blood test. A simple PSA , Prostate-specific antigen test. When his test results arrived a few days later, the doctor explained that his test numbers were high. It had reached the hundreds and the doctor explained he would require further tests, like a biopsy, but be ready for the worst, as the indications were familiar to cancer prostate.
Since that TV programme, I have had the 'privilege' (if you can call it that) of meeting so many people, like this man in the cafe, telling me of their own cancer stories, whether it be prostate or any other of the many cancers. Sometimes, the partners/carers will tell me their stories about what it is like living with and coping with someone who has cancer. As you can well imagine not an easy task. You know. Maybe I should chat to more families/carers about their own coping experiences?
By the way, He was telling me he began raising funds by swimming across the English channel. I mean. Wow! Thats no mean feat. The things people do when their backs are against the wall. But. Would he have taken this challenge on if he did not have cancer? I think it all comes down to having a sense of purpose. When people have a purpose in life then its all worth living for.
You do tend to find many cancer patients participate in various fundraising events. For example, I created my own by walking backwards along Irvine Beach to Troon and back and climbing Ben Nevis and Goat Fell with my old guitar busking at the top for about 4 hours.
Anyway, I digress. We began to talk about the side effects of the hormone treatment. He suffers from major fatigue, hot sweats and bloated stomach. I am sure to many of our fellow sufferers this will sound familiar?
Now my hormone treatment started around March 2017 beginning with injections to the stomach on a monthly basis. The injections would alternate between left and right side to give the other side a chance to recover. I remember the first one was poorly administered by the nurse. She did not shake it properly and the pain and swelling on my side was horrendous for a few days. Almost immediately my stomach began to feel bloated and I began to notice my midriff was expanding. Not greatly, at this stage, but noticeable. The leather belt on my jeans needed to go up a notch. The flashes or what I prefer to call 'the burn' became significant and frequent and disrupted my daily living. The flashes can be compared to female menopausal changes in body temperature, uncontrollable sweats and then feeling cold. For me, the flashes came at least three to four times a day and could last from minutes to an hour. The fatigue that follows after the burn made me feel disorientated and slightly confused. Great fun!!!
For me it was the top half of my body and the sweats would come mainly around my forehead. This became very uncomfortable and embarrassing, especially in public. I remember a pal of mine looking over and shouting Hey Eddy, your looking very sweaty. Haha. That ryhmes. Looking sweaty Eddy."
"Aye right Tam. See you later aligator."
Moving on. My preferred dress has fortunately always been jeans and t shirts as it was always easier to manage especially when the burn comes (I would recommend tie dye just like the old hippies haha better camouflage but to be more discreet, black t shirts guys,).
Then there are the mood changes. Swing high swing low. That's me. Boy are they a doozy to deal with. One minute Mr Nice Guy, full of Mr Blue Sky, the next, Mr Recluse, Mr Drab, stuck in a black box with no way out. No doc. The drugs did't work. This was something I had to deal with alone internally. That internal struggle almost took me to doing something stupid like taking my own life. I never, ever thought this positive living guy could stoop to that level. But I did. It was close and I even invented a favoured suicidal method.
I soon learned not to try and anticipate 'the burn' as it really had a mind of its own and could hit you when you least expect it. Day time, night time, it did not matter. During the day I had to find a cool area in the house or in a mall or in a cafe or in the office. Anywhere with a wee bit windy air and shadow. I eventually bought one of those holiday fans, you know the wee hand held ones, battery operated. Very useful. But remember to Carry some spare batteries with you or you will get caught short.
This year was the first real summer experiencing 'the burn' and it proved really difficult to cope with in extreme heat. I started to carry a rucksack carrying a change of light clothes, tissues and water. Handy if out for a walk oh, and a towel for the sweat. When I returned home my wife thought I had climbed Ben Nevis.
As a person who always enjoyed keeping fit, exercising proved difficult at times. For example, I would set off on my fatbike and do 10-20 k and when finished I would head into my garage which i set up as a mini gym with a punch bag and when I felt fine I would head in there and start a warm up, launch into my punchbag ( take that ya cancer ba....) and finish with light weights. But, guaranteed I would have to stop a few times to let the burn pass. Funny how straight after a shower, the sweating would continue for about 30 minutes. Hated that, having to find a cool corner in the house to reduce my temperature. The wee wane skulking in the corner look.
One thing I tried to understand during this period was how to recognise trigger points. Things that trigger off certain symptoms. But, I found that trying to figure out those trigger points was like wondering through a dark, dense, pathless forest, wondering helplessly, searching for a road without a map. To this day, I still cannot figure out any trigger points, so the best way for me to cope is to mentally accept their inevitability. Sh....t happens. Not an easy process when you are in the middle of trying to cope with the cancer, its treatments, the changes affecting your family and social life and my working life.
Also, you are constantly seeking out remedies, new medicines, new techniques. Ranging from yoga to boxing to hypnotism to miracle smoothies to porridge to talk walks to groups sessions wacky backy. Yes the wacky. Oh the list goes on and on. I spoke to my oncologist and he recommended cyproterone acitate (try saying that three times fast). Apparently it....lowers levels of testosterone in the body and also blocks testosterone from reaching the cancer cells. This means it can slow or stop the growth of prostate cancer. It's also known as anti androgen therapy. For me, the medicine only made it worse so I came off it. For some reason I started to feel more chilled??? I tried the alternative stuff such as sage and evening primrose. No change. But I did find the only thing that helped was a mix of paracetamol and ibuprofen tablets.
I also noticed that my joints were beginning to ache. In particular my thumbs, elbows and knees. Recently, I had a blood test and x-ray for rheumatoid arthritis. The bloods were fine but the x-ray showed slight wear and tear on my knees and thumbs. I am hoping this is not going to lead to osteoporosis, which can be a side effect of the radiation treatment. But I need to remember, being a fitness fanatic and ex footballer, this could be seen as normal wear and tear and could be aggravated by the treatment?
I did meet one chap who was diagnosed with brittle bone disease caused by long term use of the treatment. But, if you listened to every persons particular reactions to the treatment, you would drive yourself crazy.
Also, Beware googlemania! If I was to believe every search I made about cancer or any illness for that fact, I should have been dead a long time ago. The internet has its uses but it has its abuses.
On day of writing (2017), I was told I could be on this hormone treatment for another two years. Lovely. So, Planning my next two years knowing what has to come is not a pleasant path. So, massive mental and physical re-adjustments are on the way.
I recently returned to work (at time of writing I was a careers adviser, 2017) and trying to find solutions to cope with the pressures of the job, while dealing with the side effects of the hormone treatment became difficult. I noticed a distinct difference in my collegues attitude towards me which didn't help. I could talk more about this topic but I think this is for another blog. I think.
So, currently, my head is a forest and the trees keep getting thicker having to deal with both my daily, social living and now work related pressures.
But, every now and then a wee flicker of light peeks through between the shimmering branches and hopefully over the coming months the flickers become more frequent.
2016 was a turning point in my life. Cancer diagnosis does that. Right now I am trying hard to avoid the trek back to the low mental state I was in that year. The dark thoughts, the confusion, the days of staring into mid air trying to convince yourself that its all just a bad dream etc etc etc. Ugh!! Seeking the path through the forest.
My aims at present (2017) are:
a) to work on tackling the fatigue
b) figure out a 'burn' pattern and how to reduce the frequency
c) avoid negative weight gain, although not worrying as yet
d) work on physical training routines that suit my predicament
e) cope with the mood changes and try to adopt a more positive approach to this illness (not easy)
1. try to stay at a healthy weight and persist with my training as best I can. I know now that I cannot adhere to the strict routines of before, so I do what I can. I am working on a 'daily effect diary and a fitness graph. This can give me an idea where my fitness levels are.
2. my diet has had to change and I will keep experimenting with this until I get it right. I now know alcohol and curry are not good and it has a huge effect on my back passage for a couple of days. Remember it is prostate cancer.
3. to have a purpose in life. Everybody needs a purpose, it helps you focus more on the future rather than the past. This is one area I do feel requires more development. The psychological side of suffering from an illness. Not only for you personally but for others to understand and others to live with it can be difficult.
When I was told I had cancer, that word alone put the fear of death in me and we are probably more afraid of that 'word' than other diseases. Some people say 'how do you cope with this?. If it was me I would probably pack it in!' I just say 'what other choice do you have?"
My father and brother (2017)are both still fighting this disease and every day I wake up with them in my thoughts. Cancer has the capability to take and/or change lives. I have seen people go through intense pain, anxiety, and hardship due to this disease causing a feeling of hopelessness.
But, I have also met people with very positive stories by meeting their cancer head on. Nowadays due to medical advancements and the remarkable people who work hard to support you through this illness, more people are surviving and although I have found my life has changed since the diagnosis, you do have the opportunity to review your old life and develop a new strategy for the future. The hard part is finding that strategy.
Taken from my cancer blog web page called ‘Mybloghead’
If you know anyone who’s dealing with cancer or any devastating illness, take some time to show support.