Once bittern...

One consequence of having cancer is that you never quite know what is going to happen next. Katie and I still find ourselves caught out by the ability of the disease to surprise, something that was most recently illustrated when I got my last scan result (see my post "Scan results" from 14th February).

 

I was reminded last week that my hobby, wildlife photography, shares this propensity for the unexpected. I visited the Wildfowl and Wetland Trust reserve at Slimbridge with the intention of photographing some of the common woodland birds that visit a feeding station there. On the way to the feeding station I decided to quickly pop into one of the hides where, from time to time, a bittern is sometimes seen. Bitterns were once extinct in the UK but are gradually making a recovery thanks to conservation efforts. The population is still small, with just 104 male birds recorded in the country in 2011 and so seeing a bittern is still difficult especially as they spend the majority of their time hidden deep in the reeds and because they are superbly well camouflaged.

 

As soon as I entered the hide I knew that the bittern was around because of the gaggle of photographers all staring intently into the reed bed at one end of the hide. It took me several minutes to locate the bird in the reeds - only the third time I've ever seen one of these elusive members of the heron family. Initially the bittern was obscured by too much undergrowth to provide any photo opportunities, but over the next two and half hours it engaged in a game of "now you see me, now you don't" - very occasionally emerging into more open patches of reed where it could be photographed. Getting some shots of such a rare bird was certainly unexpected and made for a very enjoyable morning.

 

 

On Thursday and Friday last week I had my 11th Trabectedin infusion. As usual the process went smoothly. So far the side effects have been pretty much the same as previous cycles and hopefully there will be no surprises as this cycle progresses.

 

Heart update

Following on from my last post and the discovery that I have heart problems I've now had an ECG, an echocardiogram and seen a cardiologist. The cardiologist is happy for me to go ahead with my next cycle of chemotherapy which is scheduled for the 7th March. This is very positive news and was the most immediate issue we needed to clarify.

 

In terms of what is wrong with my heart the situation is still quite uncertain. The cardiologist said that analysing my echocardiogram results is complicated because of the pre-existing VSD ('hole in the heart') condition that I have (I was born with this, it was partially fixed by surgery when I was around four years old but the hole was not completely closed). He wants to get some of his colleagues who specialise in patients with this type of condition to look at the scan as they will be better placed to interpret the results.

 

Despite the complications he was able to tell that there are some problems with the valves on the right side of my heart, both of these are leaking slightly. He said that this can contribute to fluid retention in the abdomen and legs, something I've been suffering from increasingly of late. I will see the cardiologist in six weeks for a follow up but he will also write to me once he has the opinion of his colleagues.

 

I've continued to have problems with the skin on my arm which has developed an allergic reaction to the PICC line dressing. This has been sufficiently irritating for me to have to go to the hospital twice in the last week or so. I've now got some steroid cream that seems to be helping but that I can only apply to those parts of the skin that are not covered by various parts of the dressing. The skin that is not reachable continues to be irritated although taking antihistamines has helped a little. I have a feeling I'll have to see a dermatologist about this problem as the PICC line needs to stay in whilst I'm having treatment with chemotherapy.

 

This year has got off to a very slow start in terms of wildlife photography but I did get a few shots the other week at Pensthorpe in Norfolk. Here's a Coal Tit, there not as colourful as Blue or Great Tits but are still quite smart little characters:

 

    

Scan results

LMS has a never ending capacity for springing surprises. Katie and I expected our meeting with my oncologist today to focus on the size of my tumours and the side effects I've been having from the chemo, we were pretty taken aback then when the oncologist's opening remarks were that the scan shows that I have heart failure.

 

I must admit that I hadn't realised heart failure was a graduated condition, to me it suggests someone in an intensive care unit wearing an oxygen mask and wired up to a heart monitor. In my case heart failure seems to mean that the function of my heart is impaired resulting in me getting wheezy and breathless especially if walking up hill or having to walk quickly.

 

It seems that my heart problem is related to the fluid retention that I've been suffering from. The previous chemotherapy drug that I was taking, Doxorubicin, is known to be cardiotoxic and the oncologist thinks it may be the cause of my current issues.

 

The good news from the scan is that the tumours appear to be stable, though it seems that the extra fluid I have in my body is making the comparison with the previous scan less straightforward than usual.

 

The plan now is that I will have an echo-cardiogram and see a consultant cardiologist to review my heart condition. I will also have a two week break before my next chemotherapy treatment, hopefully this will give time for me to get rid of some more of the fluid before starting the next cycle and will also provide time to get an opinion from the cardiologist. I have to say that I'm not looking forward to the next cycle, the fluid retention has become more extreme with each treatment and was particularly problematic this last cycle.

 

On to more pleasant topics, we just got back today from a week in Norfolk. One of the aims of our trip was to see and photograph barn owls. We had some very good sightings of these ghostly looking birds but unfortunately we didn't have any opportunities to photograph them. We did manage to capture a tawny owl on video though, we put our trail camera out in the garden of the cottage we stayed in and this is what it filmed:

 

 

Not the best video but we were amazed to discover a tawny owl visiting the cottage garden.

 

 

 

 

     

 

 

 

 

My lucky fortune cookie?

Last Saturday Katie and I went to the England vs. Scotland Six Nations Rugby match at Twickenham. It's always a great thrill to be part of a crowd of 80,000 singing "Swing Low, Sweet Chariot", especially when England are in a comfortable lead! We stayed overnight in a very nice hotel in central Windsor - a great way to spend the weekend. 

Katie recently found some videos online of presentations from an oncology conference. One of the most interesting items included in these videos was a discussion on the importance of remembering a patient's condition and goals when selecting which treatment to use. The oncologist making the presentation described how three patients with the same disease but in three different situations might end up on different treatments:

1. Patient one is an asymptomatic patient whose cancer has progressed too far to be cured. In such cases the degree to which a given drug may produce shrinkage in the patient's tumours is not of much importance. What is important is selecting a drug that is likely to hold the patient's disease stable for the longest period without causing severe side effects which would compromise the patient's quality of life.
2. Patient two also has cancer that has progressed too far to be cured but in this case the patient's tumours are causing discomfort. A reduction in the size of the tumours may alleviate the discomfort so achieving shrinkage is an important aim of any treatment. In order to achieve the shrinkage the patient may be willing to endure some medium level side effects.
3. Patient three is a patient whose cancer is thought to be curable. Here the degree of tumour shrinkage that the treatment may produce is much more important and the patient is likely to be more willing to accept even severe side effects if the treatment ultimately results in a cure.

Patients one, two and three could all end up selecting  different courses of treatment even though they have the same disease. I've found that my intuitive preference is for treatments that have the best chance of shrinking my tumours even though my condition matches patient one here. I believe this is a common bias amongst people with late stage cancer, it is difficult to get away from the feeling that shrinking the tumours must be the best course of action. In order to overcome this type of bias it is important for patients to double check that their treatment choices really do match their treatment goals. 

 

Finally I had my latest CT scan on Monday with the results due on Thursday 14th February. Waiting for a scan result is pretty stressful. Dinner at our local Chinese restaurant did provide an unexpected moment of light relief tonight when I opened a fortune cookie and found this message inside:

That made Katie and I smile. I just hope it turns out to be as accurate as it is relevant!

  

Update

Here's a quick update following on from my last post. The snow here in the South West meant that I didn't get the ultrasound scan on my legs done until Monday. The scan didn't show any sign of a blood clot which was good news but leaves us none the wiser as to what caused the rash on my ankle last week. The rash cleared up over the weekend anyway, perhaps it was the pint of real ale I had on Saturday that did the trick! I'm not supposed to be drinking during this treatment but given that my liver function is ok at present I'm treating myself to one alcoholic drink every four week cycle. Those pints of beer taste extremely good to me!

 

On Tuesday I had my twisted PICC line removed from my right arm and a new line inserted into my left. I'd had the PICC line since May last year and I was starting to get some skin irritation in the area covered by the dressing, my right arm will get a chance to recover now.

 

The procedure for inserting the PICC line is virtually painless, perhaps the most uncomfortable part was having to listen to a really cheesy 1960's music compilation which included Cliff Richard. I've found having chemotherapy through the PICC line much better than having it via a temporary cannula inserted into the back of my hand. Not only is the PICC line more convenient it also prevents the chemotherapy drugs from damaging the veins in the hands and arms which is something that can happen when chemo is administered via a cannula.

 

My tenth Trabectedin chemotherapy cycle begins tomorrow, blood count and bed availability permitting.

 

Happy New Year

I had what I expected to be a routine appointment with my oncologist today ahead of my next chemo cycle. I've had a rash on my right ankle for the last few days, the oncologist thinks there is a small chance that it could be an indicator of a blood clot so I've got to go back to the hospital tomorrow for an ultrasound scan. I also had a chest X-ray today that showed that my PICC line is a little twisted so they are going to have someone see if they can straighten it out tomorrow. There go our plans to go to the cinema tomorrow afternoon!  

The side effects from the last chemo cycle have been in line with my previous experiences though the fluid retention seems greater with each treatment. I've got an Excel spreadsheet where I track the changes in my weight that the fluid retention causes; the difference between my maximum and minimum weight during the last cycle was over 14lbs - that's a lot of fluid. The extra weight makes me snore so I've been taking Katie cups of tea in bed in the morning to try and keep on her good side!

 

I haven't taken any photos so far in 2013 though I'm hoping to put that right in the next few weeks. I did however have some small success with one of my pictures from 2011, it was chosen as one of nine 'highly commended' images in the 'Travel Icons' category of Audley Travel's 2012 photo competition. There were around a 1,000 entries in that category so I was pleased to get an image in the top ten. Here's the image, "Queen of the Jungle", which I took in Kanha National Park in India:

 

 

Finally, a quick update on my fund raising efforts for Cancer Research UK. Sales of my photo book together with donations have raised £2,248! Once again thanks to all those who so generously contributed - I really appreciate your support. 

 

If you have bought a copy of my book direct from Blurb (either an e-Book or a hard copy) then please note that I don't get visibility from Blurb as to who has made those purchases; it would be great if you could drop me an e-mail or otherwise let me know if you have purchased a book through that route so that I can pass on my thanks to you. 

 

Bad pharma?

I've just finished reading Ben Goldacre's most recent book, 'Bad Pharma'. For those who are not familiar with Goldacre, he's a doctor and a journalist/writer on medicine and science. 'Bad Pharma' is subtitled 'How drug companies mislead doctors and harm patients' and presents a detailed list of issues to justify this statement.

 

The books main allegations surround the conduct of clinical trials. Goldacre makes a number of concerning points about trials funded by drug companies, backing up his statements with references to research findings:

• drug companies don't systematically publish the results of all trials that are conducted. Trials that produce negative results are significantly less likely to be published than those that find positive results;
• drug companies don't always stick to the initial trial definition. For instance, in some cases they change the duration of the trial so that it finishes earlier than planned -usually at a point when the trial results appear favourable in terms of the performance of the drug being tested;
• drug companies sometimes change the criteria that is to be used to judge the successful outcome of a trial after the trial has started, typically the newly selected criteria will present a more favourable outcome than the originally selected one;
• drug companies sometimes run trials that focus not on end points that really matter to patients but on proxy measures that may or may not really correlate to those 'real' end points (e.g. such as judging the success of a trial of a statin drug by looking at how it lowers blood cholesterol rather than by looking at how many heart attacks it prevents).

These problems with the conduct of trials mean that it is virtually impossible for doctors to judge whether one drug is better than another and this has a direct impact on patients. Goldacre goes so far as to say that the lack of reliable and comprehensive trial data results in preventable deaths.

 

In addition to the concerns on the conduct of trials, the chapter on the way in which pharmaceutical companies market their products is also very disturbing. Goldacre states that pharmaceutical companies spend twice as much money on marketing as they do on research and development. He describes how there is a great deal of research that shows that this marketing effort has a real impact on the prescribing patterns of doctors and other medical professionals - even though most doctors are confident when asked that their own decisions on prescribing are not changed by exposure to this marketing.

 

I found 'Bad Pharma' to be a very interesting and concerning book and it is well worth a read if you are interested in medicine or science. Even if only half of Goldacre's claims are true then there is something very wrong that must be resulting in real harm to patients. My one caveat on the book is that Goldacre seems to be something of a lone voice on this topic, he states himself that the professional medical associations, medical journals, regulators, legislators and the pharmaceutical industry itself do not see the situation in the way that he does - though the words 'they would say that, wouldn't they?' do come to mind here!

 

On a different topic, I received my ninth round of Trabectedin chemotherapy on 27th/28th December. As usual the infusion itself went smoothly and I wait to see how the side effects develop this cycle. I've been having increasing issues with fluid retention so that's my main concern.

 

Finally, to close this post, a couple of recent night shots of Bath abbey.