Monday, 23 September 2013

Rog T's Cancer Blog - You can't fight cancer with both hands tied behind your back

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 51 years old and in October 2011 I  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 a PSA test - down to 3.5 and an MRI scan which found absolutely nothing, two more tests in 2012 were at 3.5 and 3.9. My latest PSA test in August was not quite so promising,  back up to 4.0, 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? 

I was not planning on writing another blog in my cancer series this week. There are plenty of other subjects, totally unrelated to health and wellbeing which I wanted to cover, but to quote Harold MacMillan, "events" got in the way. In the last week, since I had the most recent biopsy, I've spoken to six or seven people who have had brushes with the cancer in some way. It seems like I can't cross the road without talking to someone who has something to say about Prostate Cancer.  What I find deeply worrying is just how many of them have had a truly awful experience somewhere along the way. 

This afternoon I was at my local gym and I got chatting with a chap who I've vaguely known for the last few years. I commented that he'd not been around for a while. He told me he'd had an operation to remove a couple of moles from his back that had threatened to turn nasty. I said "Oh I can sympathise, I had a procedure last week". He enquired what it was and so I said "prostate biopsy". He immediately said "You're a bit young for that, whats your PSA". He then told me he'd had a prostate biopsy six years ago and that it was one of the most horrible experiences of his life. He said "They didn't even give me a local anaesthetic". I was shocked. I've had two, one under local and one under general. I found the one under local to be harrowing. I cannot imagine how awful that would be with no anaesthetic. I suggested that if he had another one, he should have a general. He said "no chance of that, I had it removed". I then said "I had two, one under local and one under general. Tell anyone you know to insist on a general". Sadly my experience of the NHS in regards to prostate biopsies is that consideration for the patients feelings is pretty low on the list of priorities. As I am sure it is cheaper to do it under local or with no sedation at all, I believe hospitals have a deliberate policy of discouraging people to opt for a general anaesthetic. I have had both and I would not entertain the concept of having a local again. 

I also believe that many people are so traumatised by the process that they don't go back. I'd love to know the figures for people who duck out of treatment after the first biopsy. The NHS may save a few quid on the cost of the procedure in the short term, but in the long term patients needs are not being considered. If people find a procedure highly unpleasant and don't know that there is an alternative, I can fully understand those who will just not go back for consultations, especially if they have no symptoms. I am sure some people are fine with a local anaesthetic, but I've yet to actually speak to anyone who wouldn't opt for a general if the option were given. This brings us back to the patient. If they are so traumatised that they seriously consider not cooperating with their doctors, then they are in no position to fight the disease. They are in a fight with their hands tied behind their back. 

This brings me onto the second part of what has been bothering me. That is the way that the medical profession seems to have no respect whatsoever for any form of complementary therapy for cancer treatment. At this point, I daresay any doctor reading this will roll their eyes and say "not another one of these idiots who has read on the internet that a pill from an American website will cure them". Well no that is the last thing I am saying. I would always advise people to get the best medical advice possible. It is also 100% clear to me that Doctors are not interested in things that the patient can do for themselves which may help, especially in the areas of diet, exercise and relaxation. I have done extensive research into the subject and I believe that the NHS could potentially save billions of pounds if they addressed the issue of researching the benefits of diet on certain types of cancer. Every book I've read on the subject lists a whole range of foods that are beneficial for dealing with cancers and others which are in some way carcinogenic or promote the conditions which promote cancer growth.

It strikes me that with Prostate Cancer there would be a very simple and verifyable method to test the benefits of the claims made for various foodstuffs. There are probably hundreds of thousands of people in my situation. That is on relatively low PSA levels, gleason scores of 3+3 and on active surveillance programs. If the NHS set up an internet portal for people on such a program to keep a daily food diary, then the claims made for certain foods such as tomatoes, watercress, tumeric, pomegranite juice, Green tea,  etc could soon be verified. If those of us who chose to follow a nutritionally anti cancer regime had a markedly lower PSA level after five years than those who didn't, then that would prove the point. I have noticed many general improvements in my health in the two years that I've taken care about my diet. Less colds, no hangovers, more energy, better mental focus. I also feel calmer. My PSA has not risen above the level at which I was given the diagnosis and has been much lower for much of that period. I suppose I may get a nasty wake up call when the biopsy results come back, but whatever happens I will persevere as I feel better in myself.      

At the weekend I read an article in one of the papers, where a woman having chemotherapy had engaged the assistance of a nutritionalist who specialised in cancer treatment as she embarked on a course of chemotherapy. The nutritionalist devised a diet designed to help her cope with the effects of the chemo and explained why various foodstuffs etc should be avoided or taken. The rules were similar to the diet I follow, no diary, no processed sugars, etc. There were other things such as lemon to lower the bodies natural acidity. Now one must always be careful in basing anything on the evidence of a single person, but she reported that her tolerance of the chemo was far better than the doctors had expected. I believe this because as I understand it things like fatty foods and sugar impare to some extent the function of the liver and kidneys. As the drugs used in chemotherapy are poisons, it stands to reason that the healthier the liver and kidneys are, the better the patient will cope. As someone with no training in such issues, I am not going to advocate a diet. It may well be that for whatever reason, that would be counter productive to you. If you are having chemo, don't do anything which your doctor says will interfere with the treatment. If they say "it won't interfere, but it will have no effect as it is not scientifically proven", then that means it is OK to give it a go. It may not work, but my view is you have to eat something so why not eat stuff which MAY help. So if your doctor says "it will make absolutely no difference to your treatment whether you eat pie and chips every night washed down with coffee or a fresh salad of tomatoes, watercress and grilled fish, washed down with pomegranite juice" he is probably not basing that statement on a clinical trial. He is guessing. 

I believe the reason that doctors are so cautious of the complementary medicine scene is because they rightly believe that if you have chemotherapy and follow an anti cancer diet regime, you may wrongly believe that the diet cured you with a bit of help from the chemo, when in reality the opposite is true. The graveyards are full of people who believed that complimentary medicine is an alternative to conventional medicine. I believe anyone who tells you this is a dangerous fool. Just as a few people go to the religious shrine of Lourdes in France and come back cured of cancer, some people believe that a natural diet will destroy cancer. In some cases, the cancer will disappear, but unless the cause and effect is clinically proven, it is dangerous to assume that one is a direct cause of the other. 

The last thing I wish to talk about is the need to ensure your mental health and wellbeing. Given my experiences with my initial prostate biopsy, I'd been highly stressed about the follow up. I took the precaution of booking a night away at  the Champneys health resort ( my wife last Friday to chill out and relax. As part of the deal, I had an hour massage. I thought that after a week, I should be over the worst of the side effects and ready for some proper relaxation and a change of scene. I can honestly say I hadn't realised just how stressed I'd been until I got there. We checked in around 2:30pm and I had no energy to do anything at all. My massage was at 6pm and we booked dinner for 8pm. I was so lacking in energy, that whilst Mrs T (the wife not the blogger) went off for a Yoga class, I just lay in bed. At the allotted time, I went down and spent an hour being treated. Massage is a wonderful way to destress and unwind. By the end of the treatment, I felt completely refreshed. We went down and shared a very decent meal, with a bottle of good wine. We then had a relatively early soberish night (there is no bar at Champneys). In the morning, we had breakfast, spent the morning in saunas, swimming pools and Jacuzzi's and then had a pleasant lunch and came home. 

The first thing I did upon my return, was nip down and see my elder brother. We had a disagreement earlier in the week and I (verbally) lost the plot with him, which is not really like me. I apologised for swearing at him and explained that the whole issue of the biopsy had stressed me out.  He was absolutely fine with it. I think he'd been puzzled by my earlier overreaction and was relieved that there was a rational explanation. Now you may wonder why I mention this. It is because I believe that cancer and dealing with it puts a huge mental strain on us. Only by relaxation and destressing can we get a hold of the issues we have. If you are dealing with cancer (either as a  sufferer or carer) and you find yourself snapping at people, it probably means that you are reaching breaking point and need some support. I am lucky in as much as that I have a strong family and some very good friends. I also have enough money to go off to swanky health resorts to recuperate. If you don't have a support network, checkout Macmillan Cancer relief. They can help, it's what they are there for 

In truth I have generally coped with the issues I have quite well, most of the time. I was shocked when I sat down and realised just how stressed the biopsy had lead me to become. I am not worried about the illness or particularly bothered about the immediate situation. It was the sheer stress of the procedure and the side effects. In actual fact the actual process was far less awful this time, but the mental issues of dealing with it in the run up were worse, as I had a feeling of dread. I also didn't have a holiday this summer and have been very busy at work. So all in all I sailed into a perfect storm that had completely stressed me out. I have realised that in future, I need to address the issues before I get stressed, not in the aftermath. What was interesting was that when I had my blood pressure and ECG taken, prior to the biopsy, both were absolutely fine. It clearly was purely a case of a few kangaroos loose in the top paddock as my cousins in Oz say. Luckily, this was nipped in the bud and I am back to a generally more calm and collected general demeanour. As I go down this rocky road, I am determined to learn the lessons as I go. The lesson that I think I have started to get my head around is just how important it is to preserve and nurture your mental wellbeing as you deal with your issues. Recognise that if you found something deeply unpleasant and you have to face it again, then you will get stressed. Take whatever action you can to alleviate this stress. In my case with regards to the biopsy, this was to have a general anaesthetic and then to have a night away to unwind. Next time I will book two nights away and I will try and work out a strategy to lower stress levels in the week leading up to the procedure. I also believe that if you can afford it, theraputic massage has a role to play. My only issue is that I don't really know of a proper bona fide venue in Barnet which provides such a service. I am not in the least interested in establishments that use massage as a front for other services, therefore I am extremely wary of even making enquiries.

It is something I do need to address as I don't want to ever have to fight this fight with my hands tied. 


Vicki said...

I have gone through enormous amounts of stress in the past 12 months, including a cancer scare, and at first I was helped hugely by a friend of mine who is the best therapeutic masseuse I've ever known. However she has had to give up the massaging, and I am desperate to find someone else equally gifted. Wishing you all the best.

george vietze said...

I recently had my second prostate biopsy, the first in 1989 and I said I would die before I had another one. Well my PSA went to 16 and I was not yet ready to die. I was terrified but the second biopsy, just last week, was with local anesthesia but I took a pain pill prior to the biopsy. It was a much more pleasant experience with very little discomfort and was nothing like the one in 1989.
I was told I have a very large prostate and I am awaiting the results.