Sunday, 27 July 2014

The problem with small talk

Last week I spent a day in a wildlife photography hide with a photographer from Leeds. We had never met before and were in the hide together for over eight hours. During the day we spoke about wildlife photography but also about more general topics - typical small talk between two people who are strangers. Every time I'm in the situation of talking to someone new I find myself feeling very reluctant to mention my illness. My concern is that if I tell them that I'm seriously ill with cancer this will make them feel uncomfortable. That I've actually remained looking relatively well is also a factor here, if I looked ill then people would have some inkling that I must be poorly and wouldn't find it so surprising to hear about my situation.
The problem with not wishing to tell people about my illness is that the topics that people discuss when they first meet are all things that have been strongly impacted by my condition. For example, if people ask me about work I can tell them what my job is but if I tell them I've been off work since January with illness that immediately leads to a discussion about my health. Similarly when people ask about holiday plans I can see them looking rather baffled if I say I don't have any but don't offer any further explanation. My experience is that just a couple of minutes of small talk inevitably leads to a situation where I feel I have to explain about my cancer.
This issue occurs in any social situation involving meeting new people who are unaware of my condition. Katie and I have been to a number of parties since my diagnosis and we've found it really hard to find ways to talk to others without discussing my health. It seems to me that if people are at a party to have a good time the last thing they want is someone telling them within the first five minutes of meeting them that they have late stage cancer; it's something almost guaranteed to dent even the most cheerful party goers mood!
If I do tell people about my disease then, in some instances, this had led to them asking questions about my treatment and prognosis which pretty much force me to either let them believe that my cancer is curable or tell them that I'm terminally ill. I have always been very open about my situation but I do find the prospect of shocking or upsetting people to be of real concern.
I'm not suggesting any criticism of other people here, I know that this is entirely my problem and may even be something of an unwarranted concern on my part. I often find that writing about something helps me to understand it more fully so maybe I'll find a better way of handling these situations as a result of writing this blog.
Katie and I have had a very busy couple of weeks. I've been feeling pretty good but in the last week I've started to experience some stomach/abdominal discomfort and I'm also finding fatigue to be more of an issue than it has been of late. Overall though I'm still happy with how I'm keeping.
We visited Powis Castle in Wales on a gloriously sunny day last week. The castle was built in the twelfth century and has undergone many changes since. The gardens were looking magnificent, here a few photo's from our visit.


Saturday, 19 July 2014

Lord Falconer's Assisted Dying Bill progresses in the Lords

Friday was a big day for all those who have supported Lord Falconer's Assisted Dying Bill. The Bill was given its second reading in the House of Lords and successfully passed to the next stage of the parliamentary process, the committee stage. It is indicative of the nature of the issue that over 120 peers spoke during the debate with many of them basing their arguments, whether for or against the Bill, around their own personal experiences.
As a strong supporter of assisted dying I believe the Lords reached the right decision yesterday and hope that the bill can now move forward, however the obstacles ahead are substantial. One of the main issues relates to the availability of parliamentary time, a shortage of which is likely to result in the Bill being delayed until after the next general election. Future progress may well depend on the attitude of the next government. Given that recent opinion polls show that public support for assisted dying runs at around 70% of the population, I hope that all of the parties will consider including a commitment to progressing the Bill within their election manifestos.
On Thursday last week Katie and I attended an event organised by Dignity in Dying in Westminster. The attendees at this event included Lords supporting the Bill together with patrons, staff and supporters of Dignity in Dying. Sir Patrick Stewart, the noted actor, gave a powerful and moving speech in which he explained his own reasons for supporting a change in the law. Lord Falconer also spoke, urging his fellow peers to attend the debate and stay until the end just in case a vote was called. It was impressive to see the passion of all those at the event, their commitment to seeing the law changed gives me confidence that there will continue to be progress and that eventually the political community will catch up with the views of the wider public.
It is extremely unlikely that the Assisted Dying Bill will come into force in time for me to be able to benefit from it. I am however committed to supporting its progress as I'm convinced of the significant comfort it will provide to many terminally ill people in the future. The best way you can support the progress of the bill is to join Dignity in Dying.

Sunday, 13 July 2014

New uses for old drugs

If you're a regular reader of this blog then you may recall that for the last few months I've been taking the drug metformin. Metformin is widely used in the treatment of diabetes however I'm taking it because there is some scientific evidence to suggest that metformin may also have some beneficial effects for people with cancer. As metformin has been around for many years it's cheap and as it has been taken by many hundreds of thousands of people the side effect profile of the drug is known to be relatively low risk. This is quite a contrast to most oncology drugs which tend to be both expensive and to have high levels of potentially dangerous side effects.
Metformin is just one of a number of cheap, widely taken non-oncology drugs for which there is some scientific evidence suggesting that these drugs may have anti-cancer effects. Additional research is needed to validate that these drugs really do offer benefits to cancer patients but performing this research requires considerable investment of both time and money. For this reason few commonplace non-oncology drugs have made the transition to being fully recognised treatments for cancer. This is a great pity and seems to me to be a missed opportunity. I was very excited then to learn of a new initiative aimed at encouraging further research into such drugs. The initiative, known as the 'Repurposing drugs in oncology project' (ReDO for short), lists the following aims on its website:
  • identify the most promising drugs for further clinical investigation;
  • review and bring to the attention of clinical investigators the data for these drugs;
  • document how these drugs can be combined with existing therapies, or with other repurposed drugs;
  • develop clinical trials to provide positive or negative evidence of efficacy and
  • where necessary, suggest areas where further pre-clinical work is necessary.
I wish the people and organisations behind the ReDO project every success in achieving their aims and in seeing some of the drugs through to adoption as recognised treatments. If you want to know more about ReDO there is a good article here.
Katie and I met with my oncologist last week. He was pleased to hear that I've been feeling well and has suggested that I try coming off the steroids that I've been taking. I'm not due to see him now until after my next CT scan at the end of July, at that meeting we'll find out if the cyclophosphamide is working.
On Friday last week Katie and I spent the day at the International Air Tattoo at RAF Fairford. Neither of us had been to an air show before and we both enjoyed the day. Without doubt the stars of the show were the Red Arrows. They are celebrating their 50th season of display flying this year and put on a terrific show. It really is incredible how close they fly together - a fantastic example of trusting one's teammates!
I've not taken photo's of planes before and had great fun trying. Here are some of the shots that I got. The Red Arrows in formation (click or double click on image to see larger version):
These guys really do fly very close together:
I'm not usually in favour of smoking but I'll make an exception in this case:
To celebrate their 50 year anniversary, the Red Arrows were joined in their display by the team leaders of the Breitling, the Italian, the French and the Swiss aerobatic display teams:

Monday, 7 July 2014

A few days in Yorkshire

It's great to be able to write that I've continued to feel well this last week. I do still have a few issues: bloating - my stomach is very distended because of the tumours, occasional mild stomach ache, fatigue and an inability to sleep much past 4:30am (caused by the steroids I'm taking) but these are pretty minor and are not stopping me from being able to enjoy myself. Later this week I'm due to see my oncologist for a routine appointment, hopefully there will be no surprises.
As I've been feeling good Katie and I were able to enjoy a few days in Yorkshire last week. I wanted to return there following a visit last summer during which I photographed gannets at the RSPB reserve at Bempton Cliffs, that was great fun and I wanted to have another go. We stayed in a beautiful cottage near to Bridlington and had a super week with some very nice weather.

The cottage was converted from some old farm buildings and the loft space still provides a home to a family of barn owls. I got this photo from the bathroom window - it was the best vantage point from which to photograph the owl's favourite perch. Now if only I could find a wildlife photo competition that had a prize for 'best photo taken whilst sitting on a toilet' I think this one would have a chance! Click or double click the images to see larger versions.

The cottage was just ten minutes drive from Bempton Cliffs, here are a couple of the shots of gannets that I got there. Here's an adult taking a good look at me as it soars past:

The breeding season is in full swing so many of the adults have chicks:
And finally here's one Katie took of me 'in action' at Bempton Cliffs:

Sunday, 29 June 2014

Favourite things

Without doubt one of my favourite ways to spend time is watching and photographing wildlife with my wife Katie. We've been very lucky over the years to visit many wonderful locations around the world and to see some special sights but this year my ability to indulge this hobby has been severley limited by my health. It was simply terrrific then to spend last Tuesday evening in a hide overlooking an area used by a family of foxes. Katie and I had terrific views of two cubs and two adults. It was great fun watching them interacting with one another and trying to work out the relationships between the two adults, both of which appeared to be males, and the two cubs.
Here are some of my favourite photo's from the evening (click or double click on the images to see larger versions). First, one of the adult males:
And one of the cubs:

A cub interacting with the other adult male:
And finally one of the adults trying to look tough:
It's really special to have this period of time when I am feeling better than I've felt for quite a number of weeks, I'm planning to take as much advantage of it as I can!

Sunday, 22 June 2014

Enjoying the summer sun

Last week I started on my latest treatment, Cyclophosphamide. So far I've not noticed any side effects and, as just a single tablet a day, the treatment is very convenient to take. Since stopping the pazopanib and starting on steroids I've been feeling as well as I've been for quite a few weeks. It's really great to have a spell feeling like this when the summer sun is shining!
On Thursday Katie and I decided to indulge ourselves in some classic British seaside nostalgia by spending the day at Weston Super Mare. It was great fun to visit Weston, the first time in many years that either of us had been there. We took a turn on the big wheel, spent time in the arcade at the end of the pier and had a traditional lunch of fish and chips.
We've also been visiting a number of gardens. Yesterday we spent our time at three National Trust locations: Barrington Court, Titinhul and Lytes Cary Manor. We've visited all three in the past but we've never managed to time our visit so well with the gardens. These were spectacular at all three properties with thousands of flowers in bloom, a real riot of summer colour. Here are a couple of photo's from the day:

I'm very hopeful that I may have something other than flowers to post very soon as later this week I've arranged to hire a hide where I hope to photograph a family of wild foxes, here's hoping that the weather remains good and that the foxes are at home!

Saturday, 14 June 2014

Time to change treatment again

On Thursday Katie and I received the results of my latest scan, unfortunately these showed that pazopanib, the drug I've been taking for the last two months or so, has not had any effect on my LMS. The radiologist's report on the scan made for grim reading, it indicated that the tumours in my liver and abdomen have been growing quite significantly since my last scan, some of these tumours are getting alarmingly large now. I also had the results of a brain scan which showed that the area of abnormal tissue thought to be due to a lymphoma has enlarged slightly. 
Although we were expecting the scan to show progression of my LMS both the extent of the growth and the news that the lymphoma appears to be active again are very disappointing. In response to this I have started taking steroids in the hope these will control the lymphoma and will start a new course of chemotherapy treatment next week for the LMS. I also plan to continue taking metformin which I've been taking for most of this year in the hope that it may have some positive effect on things. 
The new chemotherapy will be administered using a technique know as 'metronomic therapy'. This involves taking a small dose of the chemotherapy agent every day rather than taking a large does once or twice every three weeks. When delivered in these low but continuous doses some chemotherapy agents have been found to produce much milder side effects whilst still offering control on the growth of tumours. You can read more at this link. The chemotherapy agent I will be taking is called cyclophosphamide, there is some evidence that this drug is effective against both sarcomas and lymphomas when delivered using metronomic therapy.
Katie and I like to go out to dinner the evening we get a scan result. If the result is good then we can celebrate, if it is bad going out prevents us from moping around at home! On Thursday we had booked a night in a very nice pub in the Cotswolds. Just a couple of hours after leaving the oncology clinic we were sitting in a beautiful pub garden drinking beer as the evening sunshine turned the old stone walls of the pub a glorious golden colour and swifts and swallows cut through the deep blue sky above. Staying at the pub was a great distraction from our news.
As I've been generally feeling reasonably well these last weeks Katie and I have been enjoying as many outings as we can. These photos are from a recent trip to Courts Garden in Wiltshire. The colours in this poppy caught me eye and I thought the second shot had some really nice details in the flower and its petals, I've gone for black and white on this one as the black and white version shows more detail than the colour (click or double click to see the images at a larger size).