Rog T's Cancer blog - Dancing in no mans land

For those of you who are regular readers and have read the previous posts on Cancer, you can skip this first paragraph.This is the latest installment in my occasional series about how I'm adjusting to living with a big C in my life.  For those of you who aren't, here's a quick summary. I'm 50 years old and I last year had a prostate biopsy following two "slightly high" PSA tests - 2.8 & 4.1. The biopsy took ten tissue samples and one of these showed a "low grade cancer" which gives me a 3+3 on the Gleason scale. I'm now on a program of active monitoring.  In early February, I got the results of the latest PSA test - down to 3.5 and an MRI scan which found absolutely nothing. My latest PSA test in August was not quite so promising, back up to 3.9, in other words the downward trend has stopped. I've no symptoms and sadly for a few people, if I'm gonna die soon, it won't be from Prostate cancer. Got the picture?

Whilst the rest of Barnet was fixated on the Royal Courts of Justice and the One Barnet Judicial review, I had a completely different priority. It was one that occurs every few months and is always a period of stress and worry. Yesterday was the day on which I got the results of my latest PSA test. The system at my doctors surgery is that you ring up after 2pm and they tell you. Normally the results take a couple of weeks to come through. I don't particularly enjoy the results. For those of you who haven't read all of these blogs, I am on what is called "active surveillance". That means I have a PSA test every three months and more or less annual MRI's and/or Prostate biopsies. The indicator which triggers more intense medical action is an upward trend on the PSA level. Since my diagnoses (when it was 4.1), it had dropped back to 3.5. The previous test had seen it back on an upward curve to 3.9. This had caused a little concern with my consultant and the suggestion that I have an MRI and another biopsy. I've had the MRI and await further instructions. So in some ways the latest PSA was a bit of a bellweather. Would the upward trend continue?

So at around 3.45pm, I rang the surgery. I gave my details and the receptionist happily told me "your PSA is normal" What I exclaimed, normal as in below 2.1??????? For a second I was overjoyed. All the green tea and pomegrante juice had done the trick !!!!!! "Er no, sorry it's not normal, it's stable, it's 3.9". For a second I was truly deflated. If she'd just said "good news, it's stable" I would have been fine, but for a second I saw the promised land, only to have it snatched away. All of a sudden a good result felt like a bad result. If you are Stockport County and you get a 1-1 draw at Old Trafford, it is a great result but if you took the lead in the first minute and United equalised in the ninth minute of "Fergie Time" you'd feel robbed. That was how I felt initially.

Now just as I rang a rather odd thing happned. My mind was all a turmoil. One of the nicer customers who uses our studios (or rather her daughter does for Ballet) asked me about the latest news for the Barnet Judicial Review. It was the last thing on my mind. I think she was a tad surprised when I confessed I hadn't been looking at the tweets. It is strange how your health can alter your priorities. It is eighteen months since I first got my diagnosis. In that time I've not eaten any cheese, had a drop of milk in my tea or had a single fried egg. I've drunk green tea with manuka honey, pomegranite juice, eaten pots of tumeric, munched all manner of strange and wonderful organic vegetables, bunches of watercress. I've lost 2 stone, run a 10K fun run. I even went through the whole of January without a drink. Yesterday morning, after taking my wife for some physio, I ran 10K at the Gym in 57.45, the fastest I've yet managed the distance on a  treadmill. This is quite significant for me. You see the reason I got my cancer diagnosis was because two years ago my knees were playing up and I could hardly walk. I was considering giving up football because it was becoming too painful. I went to the doctor for a referral to a specialist. He suggested that I have a "full check up", as I hadn't been to the doctor for ages and had a dozen or so blood tests.  That was when my raised PSA was spotted.

The trip to the consultant to see about the knees was a bit of a non event. A bit of Osteoarthritis. He recommended a trip to the physio, lose a couple of stone and consider doing less high impact sport (ie cycling). Unbeknown to me a bigger threat was on the horizon. The weight issue has been a problem for me since my mid 30's. I used to be really skinny, unable to put weight on. For some reason in my mid 30's the situation flipped and I struggled to keep it below 16 stone. I've always played football, I've never eaten a terrible diet, but I do enjoy a drink. The cancer diagnosis was a major shock. The changes I've made to my lifestyle have resulted in a complete rebalancing of my body. My weight is now stable between 14 and 15 stone. People tell me I have lost loads of weight, I actually haven't, but I think I have a much lower amount of body fat and more muscle. I had assumed that I would never run a distance again, given the state of my knees. They still hurt, but not in the way they did. It seems that shifting the weight has had a good effect. I find it incredible that I've been doing 10K training runs 2-3 times a week with no ill effects. Yesterday, after my big run, I had a sauna and then relaxed in the jacuzzi at the gym. I contemplated the strange fact that cancer seems to have (for the moment) improved my general health.

One question I am asked a lot is how am I dealing with it. Well I have no symptoms, no pain, no embarrassing side effects. Physically there is nothing to deal with. Then there is the mental side of it. That is more tricky. Last Wednesday, I was extremely low. Was this to do with the stress of the forthcoming PSA result? Normally when I feel depressed a hard gym session will shift it, but that failed. As I sat in the post workout sauna, I contemplated a line from "The Ballad of Halo Jones" - "Wouldn't it be great if you could erase all of your memories and start again afresh". I contemplated writing a blog about feeling depressed. When I get such moods (which doesn't happen often and doesn't last long), it is impossible to describe how I bad I feel. I made a few notes and one of them said "In such moods, I am fortunate that I don't feel suicidal. This is purely because I think I'd have to commit suicide a hundred times before I even started to feel better". Another trigger for this bout of depression was the fact that a good friend of mine is going through a difficult time as her mother has a terminal cancer illness, entering it's final stages. My own inability to do or say anything at all to help, my impotence to be able to even suggest anything was like an overpowering burden. It also brought home to me the loss of my own parents. When we are overtaken by such feelings it is impossible to do anything. Even standing up is too much of an effort. When I eventually got home, I had to take our two dogs for a walk. One slipped the lead and ran in front of a car on the A41 in Mill Hill. Luckily, it wasn't hit, but it added a state of panic to my already fragile state. When I eventually grabbed him, I made my way to a remote bench in Mill Hill Park. I just sat there and sobbed uncontrollably for half an hour. It was raining and the wind was blowing and I felt like I'd died and gone to hell. Then the sun peaked out from behind a cloud and I was illuminated in it's glow. All of a sudden I was struck by the beauty of the spot I'd chosen, the trees, the view of St Josephs College. The rain had stopped. For no apparent reason, all of my feelings of dejection and despair lifted. I gathered the dogs and walked home.

As someone who is generally a positive person, I was quite disturbed to feel so low and was extremely relieved that it passed. It is a very difficult thing to explain. It is even harder to discuss. At the moment, I feel like I am dancing in no mans land. I feel physically stronger and better than I have for years, but at the same time I am under a huge cloud. When I am overcome by such feelings, the last thing I wish to do is to talk to anyone. When they have passed, they pass completely and even talking about them makes me feel like I'm talking about someone else.

Anyway, let's cut to the chase. I think that the mental health of people coping with cancer is a totally neglected side of the medical response to the disease. If you ask anyone whether they want to see a psychologist or a councillor to deal with it, the natural British response is to say "No". We never want to admit there is a problem. I have come to the conclusion that it should be a statuatory part of the treatment. As I said I'm a fairly strong person and I've been shocked by some of the lows I've hit. God help me if I'd been less robust. The worst thing is that usually it is the people who most need help who are least inclined to ask for it. The bottom line is the that the primary role of the NHS should be to alleviate suffering. I don't want medication or pills to numb what I feel. It would be nice though, to know that there is some support on hand if needed. I know people will say "call Macmillan" or something like that, but you aren't inclined to call anyone when you are depressed. You are not inclined to do anything at all.

But all that aside, sorry for giving you such a grim blog for what is essentially quite good news.