Thursday, 16 August 2012

Here's to Ecteinascidia Turbinata

Today has been a very good day, Katie and I got the result of my most recent scan which showed that the current chemotherapy has had a significant effect on my tumours. It's very difficult to give a quantitative estimate, but from comparing my two most recent scans I would guess that the largest tumour in my liver now has a radius that is between two thirds and a half of what it was in April. The radiologist's report states that all the tumours are shrinking. The statistics suggest that Trabectedin produces significant shrinkage of tumours in fewer than 20% of LMS patients so it was far from a foregone conclusion that the drug would work.

As I noted in a previous blog entry the active compound in Trabectedin was first identified in a Sea Squirt -   Ecteinascidia Turbinata, hence the title of this post. To celebrate our good news Katie and I went to the pub on the way home from the oncology clinic. I had half a beer and Katie and I toasted our new favourite marine filter feeder. I'm not supposed to drink alcohol whilst on Trabectedin but there are times when a beer is essential. It was the first alcoholic drink I've had since mid-April and it tasted very good!

The plan now is to continue with further cycles of Trabectedin for the next three months; I will then have another scan to see if it is still working. While the tumours continue to shrink or remain stable in size and I continue to be able to tolerate the side effects I will stay on this drug. My oncologist told us that he has a patient who has been on Trabectedin for over a year and there are examples of people who have had the drug for considerably longer, so I'm hoping for a good run here.

On Friday last week Katie and I got up at 5am and drove over to Dundry Down, a hill just to the south of Bristol. We went there to watch the mass ascent of balloons at the Bristol Balloon Festival. The balloons are launched from Ashton Court Estate and the launch site is visible from Dundry Down. It was pretty misty so it was not much of a day for photography, however I did manage to get a few shots that I could salvage on the computer. The distance from the hill to the launch site is around three miles as the crow flies, so taking that into account along with the mist this one has come out reasonably well: 

Thursday, 2 August 2012

“Fighting cancer” – a personal view

Current and recovered cancer patients often refer to their experience with their disease as a fight, a battle or a war. Nothing here is intended as a criticism of those who view their experience in those terms, indeed it is clear to me that for many cancer patients this is a useful paradigm, however I can say that it’s not one that appeals to me.

A number of members of the LMS e-mail forum that I subscribe to refer to LMS as a ‘dragon’ and to their own experience as ‘attempting to slay the dragon’. This is not a metaphor that works for me, if I saw a dragon I would be thrilled, delighted, awed and very keen to photograph it (ok, I might be petrified and surprised too)! The thought of slaying virtual dragons is not something that brings me positive feelings.

When I was first diagnosed with cancer I sent an e-mail to some of my colleagues to update them on my situation. In that e-mail I made a reference to my intention to fight the disease. At that time I hadn’t had chance to really understand my feelings about being ill and my thoughts were shaped in part by a thought that others would expect me to adopt an aggressive attitude towards my condition. One of my colleagues replied to my message by writing that looking at engaging in a battle with cancer might not be the best way to proceed. He’d read something that suggested that entering fight mode might promote emotions that are not conducive to healing. He suggested it might be better to consider my chemotherapy treatment as a flock of sheep nibbling on the green grass of the tumours! Whilst I found this rather bizarre bucolic image to be amusing it did tally with my feelings towards my cancer.

Since becoming ill in February 2011 I’ve been very lucky in that I've managed to retain a positive outlook most of the time. Sure there have been some pretty low points, particularly around those times when we’ve received negative news on the progress of the disease or its treatment, however in general these moments have been short lived and I’ve soon returned to an even emotional keel. Frustration has perhaps been the most common negative emotion I’ve felt, this in regard to the disruption the illness and its treatment have caused to my life and to Katie and my ability to plan and to travel, but again this is not a feeling that dominates my waking hours.

In terms of my disease I have felt very few negative emotions towards it. I think this is because I see my cancer as almost certainly being the result of the TP53 genetic mutation that I posses. There is no external pathogen that is causing my disease, the tumour cells are my own cells albeit with mutated DNA and those mutations have themselves taken hold because of an inherent part of my genetic makeup. Anyway I find myself without any anger or rage to direct at my cancer.

When I think about addressing my illness it is usually pleasant and positive emotions that I feel more comfortable with. In the main these thoughts and feelings are about nurturing my body, healing, calmness, the beauty of the natural world and taking pleasure in everyday life. I also feel very motivated to control the amount of time I give to my illness, I have a lot of things to do that are more fun than researching my medical condition or attending medical appointments. Fighting a battle is a full time job and I do not feel that would be time well spent for me.

I want to make it clear that I don’t see my approach as giving up or risking a worse outcome, I just see it as a way of managing my condition that is true to my feelings and true to my goals of balancing both my quality and quantity of life. I like to be guided in my approach to my cancer by scientific evidence and to date I’ve seen nothing to suggest that the mental attitude of cancer patients influences the outcome or duration of their illness. Mental attitude is, of course, very important in determining the quality of a cancer patient’s life, but in my view quality of life may be better influenced through positive emotions than through the emotions associated with battle.

As I wrote at the beginning of this blog entry, I understand that many people find tackling their disease as if it were an opponent in a battle to be of great utility, however this approach is not right for me. If having cancer is a war then I guess that means that I am a conscientious objector and I'm very comfortable with that.