Chris Luck's Blog

I visited my local clinic for my thirteenth Zoladex injection today (they still haven’t sorted out the replacement Prostap injections!).

Actually I should have had the injection yesterday but what with my cold I completely forgot. I was grateful that the clinic was able to rearrange my injection so quickly. There are a few days grace regarding the timing but not a lot. I certainly wouldn’t have liked to have put the injection off for more than a week.

When I mentioned my cold the nurse commented on the fact that a cold isn’t a serious illness but it makes you feel awful.

Too true. My cancer doesn’t generally make me feel ill but knocks the common cold into a cocked hat when it comes to seriousness.

Outside my window,
The rain dolefully drips down,
Onto the waiting earth,
Where it is welcomed,
As the bringer of new life,

But inside my soul,
A desert; dry and dusty,
Where words are unknown,
And feelings have withered,
And become like old bones.

Where is the water?
To replenish my spirit,
Where is the rain?
To bring forth,
New words for my pain?

I am sucked dry,
And wander through barren lands,
Where emptiness,
Swallows my thoughts,
And makes my mouth dumb.

Unfortunately having cancer doesn’t make me immune form the common ailments that affect everyone. I wish it would – at least there’d be some usefulness in having cancer. But there’s nothing useful about cancer at all.

And so I find myself at home with a streaming cold. On top of all the pills and medications that I normally take I’m now imbibing alarming quantities of Lemsip and sitting on the sofa feeling sorry for myself. I’ve got through two packets of tissues already.

I’d forgotten just how unpleasant having a cold is. The worst thing is when I start to feel a bit better and hope that it may be on its way out and then shortly after feel worse than ever. It plays with me. But then all illnesses are like that. My cancer plays with me as well – somtimes pretending that its going away or at least laying dormant for a while. But its always there like a nasty stain that can’t be removed.

The worse thing is feeling unable to do anything. I feel useless and that leads to feelings of self pity and introspection. And that just feeds the cancer monster inside me. It loves self pity. I can almost hear it gloating right now.

Time to put the kettle on, make anothe cup of tea and see if I can focus my mind on something – anything!

I am currently just over half way through an Autogenics course at the Royal London Hospital for Integrated Medicine ( more commonly known as the London Homeopathic Hospital). Autogenics is a relaxation method developed by the German psychiatrist Johannes Heinrich Schultz. It was first used back in the 1930s but was only introduced to the UK in the 1980s.

The course has taken me step by step through a relaxation technique based on a series of affirmations intended to create a reflex response that should enable me to enter a deeply relaxed state at will. Well that’s theory. I will only know how useful it really is after I have finished the whole course in three more weekly sessions.

The course started by concentrating on relaxing the arms and legs and then calming the heartbeat. The last session was on breathing.

I was very interested in the autogenic stance on breathing which is very difference from the approach that I have encountered many times when I’ve taken part in guided relaxation sessions. These kind of sessions often start with breathing and often involve trying to slow the breathing or manipulate it in some way. The person taking the session will often go to great lengths to explain how to breathe, insisting that those taking part breathe from their abdomen, etc. It is not unusual to hear people being told that they are not breathing ‘properly’ and I have come across people convinced that they have been breathing the ‘wrong’ way all their life!

How different is the autogenic approach! My autogenic training is based on the notion that the body know best. It has been in charge of my breathing since I was born and doesn’t need me to interfere. Indeed, trying to control or alter the breath in any way is bad. And the idea that it is possible to breathe the ‘wrong’ way is nonsense.

I must say that I fine this approach revelatory. At first when I tried just to observe my breath without interfering I found that my breathing became awkward but after a while my body seemed to realise that I wasn’t going to try to interfere. I now find that just sitting (or lying) and passively watching the breath is a lovely meditative activity. It helps to calm the mind and relax the body.

It seems to me that the autogenic approach to breathing has much to commend itself. I don’t have to worry about breathing the ‘wrong’ way anymore but instead learn to trust my body.

Yesterday I caught the tail end of one of those ghastly reality TV shows about people relocating abroad. This one featured a retired couple looking to move to the continent (Italy or Spain – can’t remember which).

It was laughable.

Not only did the couple clearly imagine that they would live forever they also thought that they’d continue to be fit and healthy. I’m sure their fantasy image of their life abroad didn’t include becoming immobile or suffering from dementia. What do they intend to do when they’ve moved in and then receive a diagnosis of cancer or some other major illness and there’s no NHS and their family are thousands of miles away?

Those of us diagnosed with cancer know that life cannot be taken for granted. It’s not just that death is no longer just an abstract idea but also the knowledge that we may not be able to do the things that we currently take for granted. Quality of life becomes not just a wolly phrase but a real imperative. Our innocence has been trampled on and unlike the rest of humanity that go about their life in a state of denial we live from day to day in the hard knowldge of our fate.

I’d like to make a programme that follows up these people two, five or ten years later and see what’s happened. Good luck to them.

My good American friend Stan Goldberg has written a brilliant article entitled “I have cancer. Now what do you say?” Stan has prostate cancer and writes about his experiences as a volunteer working with terminally ill patients. His articles are always insightful and worth a read. In this article Stan reflects on the reaction of people when they hear from a friend or family member that he/she has cancer.

Well what do you say? I recognised this problem very early in my cancer journey and know that it is often not easy for people to know how to respond. That is one of the reasons why I write my blog. My friends and family don’t have to worry about asking me about my latest treatment or how I’m feeling – they can just check this blog!

Cancer sufferers themselves react very differently to their diagnosis which of course makes it even harder to know what to say. Some do not tell anyone of their diagnosis either because they are naturally private people or perhaps because they fear that their employment prospects might suffer. Actors and actresses in my experience are very hesitant about releasing information about a cancer diagnosis for that very reason.

But another reason people diagnosed with cancer sometimes want to keep it private is because they do not want to have to deal with other people’s questions or awkward moments.

So how should people respond to the “I’ve got cancer” moment? Stan’s advice is simple. Don’t worry about the words, just try to imagine what that person is feeling:

…. don’t worry about the right words. When you hear “I have cancer,” visualize that it’s your mother saying the words. And if you still can’t imagine what she would be feeling, then just ask …

From my point of view part of the problem is that in the west we seem at times to be obsessed by words. I know that sounds strange coming from someone who writes a blog but the reality is that there are times when words just don’t work, and hearing that someone has cancer is one of them.

I believe that we often underestimate the value of presence. When I first read the doctor’s letter telling me that I had cancer I was glad that my wife Sue was there with me. I didn’t need her to say anything and at that point I wasn’t in the right place for a hug either. I just needed someone there to witness what I was going through and to validate my feelings. If we ignore what people are going through we can end up giving them the impression that their feelings are worthless.

I need to know that my friends and family know what I’m going through. I don’t need their compassion or even understanding but just the fact that they are witnessing my pain. The worst thing is to feel that one’s pain is being ignored because that just makes it worse.

So my advice is just be there for your friend or family member who has just been diagnosed. Take your lead from them. Don’t try to belittle their experience or attempt to paint a rosy picture in that kind of ‘must be positive’ attitude that I detest. By all means ask them about their latest treatments or results but respect their reaction. And remember that a hug or just a gentle touch can say so much more than words.

I came across this American advertising/information video about prostate cancer. It’s quite hard hitting but makes the case well for raising awareness of prostate cancer:

Rudolph Steiner was an Austrian philosopher who lived between 1861 and 1925.

He is perhaps best known today for the schools that bear his name – the Steiner Schools. The basic philosophy of the Steiner schools is based around the idea of developing children as free, moral people with a curriculum that emphasises imagination, creativity and individualism. Steiner schools have considerable control over their own curriculum and, partly as a result, are nearly always private schools. The independence of these schools is quite interesting in the light of modern education thinking both in the UK and the USA where the further development of education is believed to lie in giving public funded schools more and more control over their curriculum and pedagogy. Perhaps Steiner was right! He was certainly well ahead of his time.

In philosophical terms Steiner tried to apply the scientific method or the application of rational thought to the investigation and understanding the spiritual world. This led him to develop Anthroposophy, a philosophy linked to transcendentalism and theosophy.

One of the fruits of this philosophy, apart from the schools that bear his name, was biodynamic farming and gardening, which is the forerunner of modern organic farming.

He also applied his philosophy to medicine and developed a holistic approach including for the first time the notion of complementary medicine. The most long lasting manifestation of anthroposophic medicine is the use of mistletoe in cancer therapy. The mistletoe preparation used is called Iscador and is  manufactured by the company set up by Steiner himself called Weleda, after the Celtic goddess of wisdom and healing.

This week I completed my first round of Iscador giving myself six injections in total spread over a fortnight. I now have a rest of a fortnight before completing another round of seven injections.

And the effects? Well I have felt really quite achy and tired over the past few days but that could be due to new year bugs or just general fatigue. Whether Iscador will have any effect on my cancer either in terms of inhibiting cancer growth or just providing a palliative balm I won’t know until the nest blood test in February. And to be honest it is going to take at least six months before any real effect becomes obvious. That’s the problem with naturalistic medicines. If they work at all, they take a long time. One of the supplements that I take is sage which I use to help with my hot flushes which I suffer from as a result of the hormone therapy. They do help control the flushes but they don’t stop them. And you have to take the supplements for at least two months before they have any effect.

Of course the problem with cancer is that there often just isn’t time for natural complementary therapies to be effective. I’m lucky that at least for the moment I seem to have been given some a breathing space from all the ‘hard-core’ medical stuff in the form of chemo and radiotherapy. Whether it will be long enough for Iscador or any other naturalistic therapy I may use to have any effect only time will tell.

I have posted in the past about proton therapy and its use in the treatment of prostate cancer (see my previous post proton therapy). Proton therapy is a form of radiotherapy that uses protons (surprise, surprise) instead of X-rays. Because protons deliver the majority of their energy at the end of their travel they can be used to deliver radiation much more selectively than X-rays and thereby reduce the damage to surrounding tissues.

So far proton therapy has only been generally available abroad, resulting in large costs for anyone contemplating this therapy. The NHS set up a scheme in 2008 for selected patients to be sent to Switzerland, Florida and Oklahoma for proton therapy. So far 80 have received treatment under this scheme but it is anticipated that there will be hundreds of patients accessing the scheme by 2014.

But now comes news that the government has agreed to funding 150 million in order to develop facilities for proton therapy in the UK (BBC web report). At the moment no specific site has been identified for the new facility although the Christie NHS Foundation Trust in Manchester, University College London Hospitals NHS Foundation Trust and the University Hospitals Birmingham NHS Foundation Trust have been mentioned. The plan is for the new purpose-built NHS facility to open in 2016. Hopefully it will not be delayed by the wider economic environment.

So is this good news for men suffering from prostate cancer? Probably not. It is unlikely that the new proton therapy facilities will be used to treat prostate cancer. Because of the nature of proton therapy it will most likely be prioritised for dealing with cancers where there would be the potential for conventional radiotherapy to damage to nearby, sensitive and critical organs; for example cancer of the eye or ear where damage could result to the brain.

But who knows – perhaps when the NHS finally has access to proton therapy it may become much more widely used. Certainly there have been reports of proton therapy being very successfully used to treat prostate cancer abroad.

The true story of a group of Yorkshire Women’s’ Institute members who produced a nude calendar to raise money for Leukaemia is well know. It was made into a very successful film called Calendar Girls in 1999 starring Helen Mirren and Julie Walters among others. It has since been made into a play by Tim Firth currently on tour.

Well, a photographer from Cornwall, Ontario Canada. by the name of Jason McNamara has come up with the brilliant idea of a ‘Manly Men of Movember’ calendar celebrating the facial hair of men that have been raising money for Prostate Cancer. The idea for the calendar was origanlly suggestted by his friend Marc Bray. “I thought it was a great idea so I immediately went on my fanpage and made a contest. The contest was, basically, submit your photo and the most likes gets in the calendar”, said McNamara.

Unlike the national attention that Calendar Girls developed, the ‘Manly Men of Movember’ calendar is only expected to have a run of a hundred or so and just sell locally. Check it out here. It’s possible to get a copy at Jason’s Facebook page at http://www.facebook.com/frameme. All the money raised will go to Canada Movember.

It seems a shame that such a good idea doesn’t generate more interest. Perhaps the Movember organisation will decide to run their own calendar next year, or maybe someone will produce a UK version. Any takers out there?