Chris Luck's Blog

I used to believe strongly in free will – that we were free agents capable of making decisions under our own violation that would affect the course and outcome of our life. But as I’ve traveled on my cancer journey that belief has been steadily eroded.

It is perhaps inevitable that anyone with cancer, especially stage four cancer will become more fatalistic in outlook. There is something grotesquely unfair about cancer that is an affront to our notion of what life should be like. We would all prefer a world where evil people are rewarded with disease and personal misfortune as a result of their behaviour, but the reality is that innocent children die abed and evil men live long lives. Life is inherently unfair.

My own research for my PhD confirmed for me the strong influence of our subconscious on our daily lives and the decisions we make. We may like to think that we make decisions coolly and rationally but human behaviour is rarely rational and we are driven by motives and desires that are not necessarily within our conscious awareness. Free will is perhaps an illusion – the cruelest illusion of all.

Today the media reported the news that NICE have agreed to recommend Abiratone for general use across the NHS. You may remember the fuss when NICE originally refused to approve the drug (What the f***!!!).

In their report the Daily Mail suggested rather self indulgently that their ‘campaign’ had a look to do with NICE reversing their decision. However, I know of several people who wrote to their local MP about this issue, some as a result of reading my blog. To them I send my heart felt thanks. The lobbying undertaken by individuals and the prostate cancer charities no doubt had an impact although I think in reality NICE were playing a rather canny game of holding out to make the pharmaceutical company drop their price – which they did.

Commenting on the recommendations Sir Andrew Dillon, Chief Executive of NICE said:

“During the consultation on the draft guidance Janssen, the manufacturer of the drug, submitted further information for the committee to consider. This included a revised patient access scheme which involves providing the drug to the NHS at a discounted price; further information on which patients would benefit most and clarification on how many patients could receive the drug. These factors enabled the committee to revise its preliminary recommendation and now recommend the drug for use on the NHS.

Whatever the reason, this new decision means that men with advanced prostate cancer will have access to one of the few drugs that holds out any hope for men whose cancer has become resistant to normal hormone therapy treatment and chemotherapy. It must be surely one of the best decisions that NICE has ever made.

Before my diagnosis I would have considered myself a needle phobic. The thought of someone sticking a needle in me would make me feel quite sick.

So it is perhaps a sign of the journey that I have been on over the past three years that on Tuesday I willing volunteered to have at least two dozen needles stuck all over my body. It was my first acupuncture session.

I was somewhat startled to find that my acupuncturist turned out to be an Irish gentlemen. Somehow I imagined that he or she would be Chinese. How stupid! Obviously anyone can train to be an acupuncturist and this chap turned out to be very professional and competent.

After a brief chat and filling in some obligatory forms(forms, forms, always forms!) he got down to business. I lay down while he inserted at least two dozen needles in my legs arms, chest and scalp, and no, they didn’t hurt a bit. He moved so quickly and skilfully that the needles were in before I had time to think. Then I was left alone with some relaxing music for about half an hour while the needles did their ‘thing’. He deftly removed the needles and as I turned on my side he then inserted some into my back. After a while they were taken out and the session was over.

And the result? Well I can’t say that my back feels any better but the pain is my arm is significantly improved. In fact I’m quite impressed and am looking forward to my second session next week.

Ever heard of FOMO? No? Well I hadn’t until I came across this particular acronym when reading a magazine in a doctor’s waiting room. I seem to be spending most of my life these days in a hospital or doctor’s waiting given me ample time to accumulate, like barnacles on a ship’s hull, a wealth of petty information and facts from popular magazines.

Well, FOMO stand for the Fear Of Missing Out. The article I was reading suggested that FOMO is the major driver in the proliferation of social networking – it’s not so much that people are keen to keep in contact with their friends but rather than they are anxious not to miss out in some vague, undefined way. It’s a kind of ‘the grass is always greener on the other side’ syndrome.

And you know what? I think there’s a strong element of truth there. People can often feel that others are having a better, more exciting time. It’s nonsense of course. It all depends on what you mean by better or more exciting. And for all those people that you might be able to convince yourself are having a better time than you there are plenty that are having a thoroughly rotten time as a quick perusal of any daily newspaper will testify. But then FOMO is not rational – it’s just a kind of feeling.

Had an appointment with my local GP yesterday. It was a sort of courtesy visit to keep him informed about my progress – the last time he had seen me I was laid up in bed at home after one of my recent visits to A&E.

The situation had been quite awkward a week or so ago when we tried to arrange a blood test at the clinic instead of going all the way into the Royal Free. After some fuss the doctor arranged the blood test at the clinic but I had to tell him that we had decided to go to the Royal Free after all! At the last clinical meeting the oncologist told us that they wouldn’t consider a PSA score that was not undertaken by their lab which made the whole idea of a local test pointless.

I also used the visit to get some more medicine as I was starting to run out of the slow release morphine and a couple of other drugs. He didn’t hesitate but wrote out a prescription immediately. I think I could have asked for any drugs and he would have given them to me!

People are very anxious that I’m not in pain. The doctor asked me if I needed any more morphine solution. No! I already got half a dozen bottles of the stuff. I’m thinking of inviting some friends round for a morphine party!

It’s all very well not wanting me to be in pain but the alternative is for me to feel sick and sleepy all the time with all the morphine sloshing around my body. There’s no such thing as a free lunch. The choice is not simply pain or no pain. If I’m so drugged up that I can’t do anything then I might be prepared to accept some pain as the price that I have to pay to be able to be active and useful.

As far as I was concerned the only real purpose of today’s clinical meting was to get a sense of how well the oncologists thought the Zytiga regime was going. It is now two months since I was put on abiratone after my PSA shot up from 4.2 to 33.

Well the oncologist told me that my PSA now stands at 88, up from 79.13. So it is clearly still rising and the disease is still progressing.

However the rate of increase seems to have slowed down slightly. Grasping onto this straw I asked to stay on Zytiga for another month. Both Sue and I were surprised by how sanguine the oncologist seemed to be with the notion of coming off. The problem with stopping Zytiga is what else is there?

We had a brief conversation about Stilboestrol, (Oh God no) and chemo, although the oncologist seemed to think that I wouldn’t be able to tolerate cabazitaxel, the only chemo drug suitable, as I’d had problems with Taxotere (docetaxel). Well that doesn’t leave much. It feels very much like we’re scraping the medical barrel and that my options are fast diminishing.

But for now it was agreed that I will stay on Zytiga. However in a month’s time a definite decision to continue or not will have to be made. It feels like time is running out.

Friday 4th May 2012

Dear Terry,

Me again. Thought I’d let you know how I’m getting on. It’s a while since I last wrote to you (Dear Terry, Letter to a friend).

At my clinical meeting in February they dropped the bombshell that the cancer had moved into the bones. My PSA had shot up from 4.2 to 40. I’ve arrived. I’m now a stage 4, fully metastasised cancer patient. There is no stage 5, Terry – this is it.

I thought it would be at least another year before the cancer entered the bones, but hey, … that’s cancer. The truth is that my prostate cancer has been a vicious, aggressive bastard from the start. That was obvious from the Gleason scores following my biopsy. Yet somehow I’d hoped that all the medication would have some impact. But even the six months of chemo seemed to do bugger all. The cancer just laughs at the efforts of the doctors.

So now they’ve put me on this new anti-cancer drug called Zytiga. There’s been a huge fuss about whether it will be available on the NHS. Well I’ve got it so I suppose they can’t just take it away. Whether it will work is another story. So far my PSA has continued to rise even though I take the new medicine daily. Next week there’s a clinical meeting and perhaps the doctors will have some view on whether it’s working or not.

If it’s not working they’re going to offer me yet more chemo. I really don’t want any more chemo, Terry. I don’t want to go down to the chemo ward and have them put the line in me and pump me full of poison week after week after week. I don’t want to feel like shit. Now that I’m stage 4, quality of life is much more of an issue. What time I’ve got left I want to enjoy.

I’ve had some pain from a secondary tumour in my right arm. They gave me some radiotherapy but the pain is still there. It’s a funny sort of pain – well not funny ha-ha. I can only describe it as having toothache in my arm. Movement and touch doesn’t seem to make any difference. Like my cancer it just shrugs off the feeble attempts of the medical profession to control it.

I have to accept that pain will be my constant companion now. A couple of weeks ago I had a bout of excruciating back pain and was in A&E. They even kept me in overnight at the Royal Free. The only other time I can remember being in hospital is when I had my appendix out back in my early twenties. The medical staff were very good and I must say that I think I got excellent treatment. Having said that, I was very happy to be allowed to go home the following day, albeit with another box of medication.

Terry, I’m on so much medication at the moment that it’s easy to lose track of what I should take and when. I spoke to my palliative nurse and we’ve agreed to start cutting down the medication, especially the morphine, which makes me very sleepy (and constipated).

Palliative. That means they can’t stop the cancer they can only try to ameliorate the worst effects. So now I suppose I get ready to die. I’ve already spoken to Sue about my initial thoughts about funeral arrangements. This is what the cancer has done to me. I’m planning my own death.

How do you come to terms with your own death, when you know it’s slowing approaching nearer every day? What’s the best attitude to take? What’s the most positive slant that you can put on something that is negative in every way?

I suppose I could rant and rage in some sort of Dylan Thomas ‘do not go gentle into that good night’ fury. The trouble with anger is that you can’t keep it up for very long. At some point you run out of energy.

I could weep and wail, hoping that something as insubstantial as tears could wash away the fear of my impending doom. But tears dry up eventually as well and then what are you left with?

I could become more pious, seek God (where did I leave him?) or adopt a kind of Buddhist stoic acceptance of my fate. Bugger that!

I could of course sink into depression and ask what’s the point? But whether I’m angry or sad makes no difference to the cancer at all. I am powerless before its implacable and relentless progress.

In reality I probably feel all those things and go through all those emotions one after another within the space of an hour or less, twenty-four hours a day, seven days a week – rant, rant, weep, weep, pray, pray, cry, cry – on and on and on. Perhaps more worrying is a sense of emotionless that overcomes me when I just feel empty and dry, like autumn leaves blown about on the wind. Somehow I think you would have coped much better than I am. It often seems to me that anybody else would cope better.

I can’t help feeling that I’ve let everybody down, my family, friends and work colleagues. I should be here to help and support them. I’ve spent all my professional life helping and supporting others. Now it’s me that needs support and it makes me feel powerless and depressed. My career is over – thirty-four years ended just like that. What was it all about?

It’s difficult not to feel resentful about being cheated out of an old age. Not that old age holds much appeal but even so, why should I miss out? But then you missed out so much yourself dying so young. I should be grateful for what I’ve got and what I’ve achieved but it’s hard. My achievements seem pathetic and paltry – what do they really matter?

In the past I had thought that I’d like some grand funeral, with weeping and wailing of people distraught at my passing. But you know what? I’ve come to understand what solace there is in obscurity. At the end of the day we are all dust whether we led a good or bad life, whether we were dullards or geniuses. I will join that immeasurable throng that has gone before me and accept the inheritance that all humanity has earned.

I hate crowds. But then at least you’ll be there – a friendly face. That, perhaps is worth waiting for.

See you soon.

Love Chris

The last century has seen huge strides in human achievement and understanding of the physical world. Man has landed on the moon and plumbed the depths of the ocean. He has unlocked the mysteries of the human gene and created machines that can undertake mind boggling calculations at lightening speed. He has looked into deep space at the very birthplace of the stars themselves.

However, arranging a blood test at the local clinic is obviously a step too far.

Despite my best efforts to attempt to arrange a blood test at my local clinic I found myself today on the train journey into Hampstead to have my blood test at the Royal Free Hospital. The fact that it obviously makes much more sense for me to take a five-minute walk to my clinic rather than an hour’s train journey into London it appears that making such an arrangement is beyond the capability of the NHS.

Perhaps there is some as yet unknown physical force of nature that makes this last obstacle to mankind achieving complete mastery over the universe impossible. Or perhaps the mere concept of having a blood test locally is too hard for the mind to grasp and requires an intelligence far above that which humans are yet capable.

We may never know.

All I know is that I will keep making the journey into the Royal Free Hospital for a five minute blood test and then back again.

Visited my local clinic for my fourteenth Zoladex injection yesterday. What with all the drugs inside me I’m not sure why we’re bothering to keep these injections going. Surely the Zytiga is doing everything now? Oh well.

I quite look forward to these sessions. The nurse and I always have a pleasant banter, putting the world to rights. She asked me how I was so I told her the cancer was in the bones.

“So it’s keep calm and carry on then,” she said.

Yep that’s about it.

Joleen Krupa is a writer for RadiationTherapyschools.org, a resource for students interested in becoming a radiation therapist, and has submitted the following article about prostate cancer and bone health.

Prostate Cancer and Bone Health
How They Are Related and What to Expect

INTRODUCTION
The diagnosis of prostate cancer in the male community signifies a devastating incidence of death to males just as breast cancer poses a similarly deadly hazard to women. The presence of the disease can be easily detected by a rather uncomfortable but simple exam performed in the doctor’s office. Men are encouraged to undergo a yearly exam to detect abnormalities in the gland which would warrant further investigation and testing. There is evidence that the cancer is hereditary as incidences of the cancer have been traced in families. This is not a proven fact, however.

THE DISEASE
If an abnormality in the prostate is detected by examination, typically a biopsy is the next step for the patient. If cancer is found but it is confined only to the prostate itself, removal of the gland is often a step which can prevent further problems. On the other hand, if the cancer has spread outside the prostate itself, the consequences become more serious and more aggressive therapy is indicated.

THE TREATMENT
If the involvement of the prostate is more significant and the cancer has spread outside of the gland, a regular treatment protocol will involve a combination of drug therapy and radiation. A frequent course of treatment is currently ADT, or androgen deprivation therapy, a hormonal-based treatment which deprives the body of a substance known to increase the growth of the cancer.

EFFECTS OF THE TREATMENT
The effect of the ADT treatment is frequently compromised bone health, including osteoporosis, weakened bone mass and bones which fracture easily as a result. This can be battled with the addition of vitamin D and calcium supplements during and after the ADT treatments. These neither prevent the bone mass decrease, nor lessen the possibility of fractures, but overall improve bone density and provide comfort and enhanced quality of life for the affected patient. They do not by themselves increase the rate of survival from the cancer.

CONCLUSIONS AND THE FUTURE FOR PROSTATE CANCER SURVIVORS
Prostate cancer is a dreadful disease, affecting men of all ages. It can be easily detected and if caught soon enough, treatments exist to eliminate the disease and allow the cancer sufferer to continue to enjoy a meaningful life. Once the cancer spreads, or metastasizes, treatment options become less simple or effective. Catching the cancer in its early stages can often be remedied by removal of the prostate gland; at later stages, medicine therapy or even radiation is necessary to effective treatment. The more aggressive treatment protocols often impact the patient’s bone health, causing collateral problems which must also be treated to aid the patient in his survival.

The discovery of effective treatments has contributed to the increased survival rates of prostate cancer patients. The new treatments both lengthen and benefit the lives of the men receiving them. There is no cure for prostate cancer but one is certainly in the future as ongoing research teaches the medical profession new facts each year.