Frustration!

Today has been three quarters pleasure and one quarter frustration.

First the pleasure, Katie and I bought two paintings a couple of weeks ago after attending an exhibition of a locally based artist’s work. We went along to her studio this morning to collect the pictures. It was great fun buying directly from the artist and having the chance to discuss her work with her.

After dashing home and hanging the two paintings in the dining room we went out for lunch at Yen Sushi, a place that has recently become one of our favourite lunchtime restaurants in Bath. They serve a wide range of dishes and it is easy to eat a very healthy and tasty lunch there.

Tonight we were at our favourite place for steak, Hudson’s Steakhouse. As ever the meat was beautifully tender and beautifully cooked, it went very nicely with a couple of glasses of Zinfandel.

The frustration arose from our trip to the oncology clinic this afternoon. Our expectation was that we would get the results of the CT scan that I had last week. Unfortunately the radiologist had compared that scan to a scan I had in November 2011 rather than to the more recent scan I had in January this year. The radiologist’s error left the oncology consultant and his registrar unable to determine anything meaningful about the effectiveness of my current chemotherapy treatment. The oncologist will get the radiologist to look again at the scans on Tuesday; in the meantime he recommends that I go ahead with the next cycle of my current chemotherapy on Monday.

So, another few days of uncertainty ahead until we hopefully get some answers on Tuesday!

The emperor of all maladies

I’ve recently finished reading Siddhartha Mukherjee’s Pulitzer Prize winning book “The Emperor of All Maladies – A Biography of Cancer”. The book documents the history of cancer treatment, starting around 2500BC and rapidly advancing to cover the story up to the modern day. The author was well placed to produce such a work as he is both a cancer researcher and cancer physician, he also happens to be a very capable writer.

I began reading this book in the spirit of “know thine enemy”, indeed Mukherjee’s stated aim with the book was to answer the questions asked by his patients. In places “The Emperor of All Maladies” is both upsetting and rather frightening but it is also always compelling and informing. Most of the book focuses on the last hundred years, the story of the treatment of cancer in this period is one of false starts and wrong roads followed, ego triumphing over the scientific method, misplaced optimism about the proximity of a cure and tremendous suffering by patients. On an intellectual level the heterogeneity, resilience and adaptability of the disease is something to marvel at as well as being something that explains why this illness is so difficult to treat.

There is hope in the book too as it details how, over the last twenty five years, cancer prevention and treatment has advanced making inroads and improving patient outcomes across a range of different cancers. Mukherjee explains how research has provided scientists with a much greater understanding of how cancer occurs and develops, particularly at the genetic level. This understanding has led to the development of new drugs like Herceptin and Gleevec which have had close to miraculous results against some cancers. These drugs are targeted therapies, attacking particular forms of cancer on very specific and narrow chemical fronts. Unfortunately drugs of this type have been created for only a very few cancers so far.

Mukherjee is cautious about the future rate of progress in cancer research, perhaps this is not surprising given the history of cancer treatment as recounted in his book, however whilst he does not foresee a comprehensive cure he does foresee ongoing advances across the field leading to stepwise improvements in care.

This book has given me a much better understanding of cancer and cancer medicine and provides a useful context within which to understand my own treatment. For anyone interested in cancer or for anyone who enjoys popular science books, I highly recommend “The Emperor of All Maladies – A Biography of Cancer”. Mukherjee does a terrific job of weaving a coherent narrative from many historical threads and despite my initial expectations his book is a real page turner.

Diet and Cancer

What’s the best diet to eat if you have cancer? This is a question that is often touched upon by the contributors to the LMS e-mail forum that I follow and whenever this topic is raised it produces a lively discussion with many divergent opinions. There are a number of very particular diets that some people claim as beneficial to cancer patients, for instance diets that include a lot of alkaline foods, diets composed entirely of the juice of uncooked vegetables and fruit etc. Personally I’m always very keen to understand the scientific evidence that supports the value of dietary changes before I make them.

When it comes to the prevention of cancer, the evidence for the benefit of eating the right diet is compelling. Diets high in vegetables and fruit and low in animal products have been shown to significantly reduce the risk of developing certain types of cancer. A concise summary on dietary advice in this area can be found on the World Cancer Research Fund website:

http://www.dietandcancerreport.org/expert_report/recommendations/index.php

Dietary recommendations for people with cancer often focus on advising cancer patients how to consume enough calories to maintain their weight. This isn’t surprising as cancer and its treatment often have the effect of reducing a person’s appetite. For those with cancer who do not have a problem maintaining their weight, the general advice seems to be to eat a healthy and well balanced diet similar to that recommended for preventing the disease. Cancer and cancer treatment put a lot of demands on the body so it makes sense to eat a diet that ensures the body has access to all the vitamins and minerals that it needs to stay as healthy as possible. For me this means eating a wide range of fruit and vegetables and eating less red meat than I used to.

There are also a small number of more specific changes that I’ve made to my diet that have been inspired by cancer related research, these include:

• Drinking green tea. Green tea has been shown to have preventative value against some forms of cancer. I have a genetic profile that means that my body metabolises the active anti-cancer ingredients in green tea more slowly than most other people. This means that the active ingredients stay in my system longer and this has been shown to enhance their effect. Other research suggests that green tea can slow the rate of development of prostate cancer. I’m not aware of any scientific evidence for the anti-cancer effect of green tea in LMS, but as drinking moderate amounts seems to be a harmless activity I’m giving it a go.
  
• Reducing my intake of oily fish. A recently published study showed that some of the oils found in fish can interfere with the operation of certain chemotherapy drugs. On this basis I’ve decided to eat significantly less oily fish whilst on chemotherapy.
  
• Eating low GI foods. This change to my diet is inspired by the book “Anti-Cancer: A New Way of Life”. The author, David Servan-Schreiber, a medical doctor and professor of psychiatry, extensively researched the topic of diet and cancer after himself being diagnosed with brain cancer. There is evidence that a sugar rush can stimulate the growth of tumours and eating low GI food robs them of this boost.
  
• Eating mushrooms to boost my immune system. This is another idea taken from the book mentioned in the previous point. There is evidence that shows that mushrooms, particularly Japanese and far eastern varieties, can stimulate the immune system and give an anti-cancer effect.

Regardless of whether these dietary changes actually have a physical benefit, I’ve found that they definitely have a positive mental value. My diet is one of the few things that I can control that could have a beneficial effect on the course of my illness and so by adjusting my diet I get a feeling of doing something positive to actively improve my situation. I’m very lucky that Katie is a sensational cook, she has integrated these changes into our diet and has found some sensational new recipes that are a joy to eat.

Whilst we try and follow these dietary guidelines we sometimes like to treat ourselves to something that breaks the rules, especially if we think we might benefit from some ‘comfort food’. We have a table booked at our favourite steak restaurant for next Thursday night. It’s the day we get the result of the CT scan that I had on Tuesday so we’ll be celebrating or commiserating, either way I know I’ll still enjoy my steak and chips!

Third time lucky

I had the third treatment of my current course of chemotherapy on Monday. Following the nausea I experienced previously my oncologist altered my medication and this seems to have had a positive effect, especially on Thursday and Friday when in the previous cycles I was feeling the most off colour. The only downside with the altered medication seems to be insomnia which is possibly caused by the extra steroids that I am taking; I slept better last night though so hopefully that problem won’t persist.

In addition to the changes to my medication, Katie and I have also been very careful this time around to make sure that I’ve been staying very well hydrated to help flush the chemotherapy drugs from my body and we’ve also split up our main meal of the day into two separate courses so that I am not eating too much in one sitting. It’s impossible to tell whether this has helped but we’ll be sticking with this approach in future just in case.

I’m now halfway through the six cycles of Doxorubicin. I have a CT scan on Tuesday that I will get the results from on April 19th, that will tell us if the chemotherapy is blocking the cancer from growing or, better still, actually shrinking the tumours.

A bit of spring sunshine

The run of beautiful weather has continued this week; it is easy to imagine that it must be June rather than March. On Monday Katie and I enjoyed a walk from Marlborough through the Savernake Forest, it was slightly strange to be walking through woods in which the trees are barely in bud but with the temperature into the 20’s. Despite the bare trees spring is in the air with the woodland birds pairing up and singing out their claims to breeding territories.

Today I had a routine appointment with my oncologist. The heart scan I had a couple of weeks back hasn’t shown any problems and although my blood counts are still a little low they should be good by Monday so things are looking positive for the next round of chemotherapy. The oncologist has agreed to modify the anti-sickness drugs that I am taking to see if that will control the week long nausea that I've had each cycle. 

My oncologist confirmed what I already knew from reading about the experiences of other patients: I have been pretty lucky so far with the side effects from the Doxorubicin. He said that many people are too poorly to work when they are taking this drug let alone to be out completing ten mile walks.

Over the last couple of months I've been entering various photography competitions. So far I haven't managed to win any of them but I've had several pictures shortlisted or in runner up spots. This week one of my images was "highly commended" in the wildlife section of the 2012 Audley Travel photo competition. There were around 1800 entries to the wildlife category and judging was done by a professional wildlife photographer so I was pleased that my photo made the top ten. My image is the second one down and shows two young chimp brothers playing together in the Chambura Gorge in Uganda:

http://photocomp.audleytravel.com/Winners 

Update on latest chemotherapy session

On Monday I received the second of the six planned infusions of Doxorubicin. I decided not to post for a couple of days so I could get a better feeling for how the side effects from this cycle compared to the last.

Overall I have had fewer side effects this time around. I've been feeling nauseous and as of this afternoon I have also developed some abdominal discomfort/pain. Both of these effects are milder than at the same time in the last cycle however. Hopefully by the weekend I should be starting to get back to normal. I’ve read a few horror stories from other LMS patients receiving Doxorubicin so I really have to be very pleased with how well I seem to be tolerating it so far.

I have an echocardiogram scheduled for Monday next week to monitor my heart function. Doxorubicin is cardiotoxic so regular checks on heart function are a common safety precaution used during treatment though a recent scientific study has questioned the value provided by this form of monitoring. I’m not expecting the scan to reveal any problems as I don’t have any symptoms that could indicate a problem though if there is one thing I have learnt over the last year it is never to take the outcome of medical tests for granted! 

The cardiotoxicity of Doxorubicin means that there is a maximum recommended lifetime dose; generally this dose limits patients to having only one course of treatment which is unfortunate for those whose tumours prove to be responsive to it.

After I had the chemotherapy on Monday Katie and I had lunch at Brasserie Blanc in Bristol and very nice it was too! If you are in the area and are looking for a good value, good quality meal then you can't really go wrong there; £11.50 for two courses from a small but interesting menu. I've eaten there several times over the last eighteen months and everything I've tried has been good or excellent.

Thoughts on an anniversary

There are three dates from last year that stick in my mind in relation to my illness. February 27th was the day I was rushed into Frenchay hospital to undergo emergency surgery to relieve the acute hydrocephalus I was suffering from; March 9th, one year ago today, was the day I was told that a CT scan had identified that I had tumours and April 19th was the day I learned that I had Leiomyosarcoma.

One year on from getting the results of the CT scan I still remember vividly how it felt to be told that I had tumours. I was still in hospital recovering from the hydrocephalus whilst the doctors carried out various tests to try and identify what had caused it. On the afternoon of March 9th I was expecting a visit from the neurologist to discuss the results of an earlier CT scan. When he entered the ward the expression on his face told me all I needed to know, it was immediately clear that the scan must have revealed something unwelcome. I was relieved that Katie was with me so that we could hear the news together.

Prior to becoming ill I had given a little thought to what it would be like to be diagnosed with cancer, not least because my family history on my father’s side has been plagued by the disease, when it comes to the reality though this is not an event that it is easy to rehearse for. The scan had identified a mass in my lower abdomen and also a number of masses in my liver. The neurologist said that he and his colleagues were almost certain these were tumours. His words were quietly spoken but their effect was shocking and stunning. I’ve never been on the receiving end of a tackle from Matt Banahan, the six foot seven inch tall, eighteen stone Bath Rugby wing, but I imagine the impact would be similar.

The neurologist went on to explain that I would need to undergo a biopsy and other tests to enable them to identify the exact nature of the tumours. He also said enough to leave Katie and me in no doubt about the seriousness of my situation. After the neurologist left a nurse very kindly made us a cup of tea. Drinking tea may seem like a very clichéd British response to the situation, but it did at least help us to recover a little composure! 

If I had known a year ago that my health would be as stable as it has been then I think I would have been very pleased and relieved; in such uncertain situations it is very easy to spend time dwelling on the more negative possibilities. Realistically I have very little ability to influence the future course of events, so spending time worrying about what might be is not, in my view, a very productive use of my time. I think that is a useful philosophy for me to take forward into the next twelve months.