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!

 

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.

 

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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).

 

 

 

 

 

 

     

Playing the waiting game again

Last week I had an appointment with my oncologist. We talked about the symptoms I've been getting and about the continued growth of some of the small tumours I have on or close to the surface of my skin. Even though I've had a lot less trouble from the abdominal tumours these last weeks the oncologist's feeling is that my current treatment is not working. We don't want to prejudge things so we will wait until the results of the scan that I had yesterday are available before taking any decisions. The medical team will discuss these on Tuesday before I see my oncologist again on Thursday. As I've written before the alternative treatments available to me are highly speculative so it will be very tough to hear that the pazopanib is not working if that is indeed the case. Despite the rather down beat medical situation I've actually continued to feel reasonably well this last week which is definitely something I can be positive about.

 

The pazopanib has begun to turn my hair white, this is a common side effect of the drug. I'm increasingly starting to look like an older version of myself - wise and distinguished I like to think! I'm hoping my hair will go completely white in time for the world cup, if it does I'm going to temporarily dye a St.George's cross on each side of my head. You have to make the best of these things and turning what  could be an unwanted side effect into a source of amusement seems like a good idea to me.

 

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I finally took some wildlife photo's a couple of weeks ago. I was limited to my back garden but I did find this rather scary looking creature lurking in the rocks by our garden pond. This is a wolf spider. Unlike most spiders this one does not use a web to catch its prey, instead it uses its keen sense of sight to spot potential meals and then chases and leaps on them before piercing them with its fangs. It makes you glad that these things are only a centimetre or so in size doesn't it?!

 

 

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Lord Falconer's Assisted Dying bill is due to be debated in the Lords on the 18th July. This is a crucial debate for the bill with the outcome too close to call at present. If you agree with this bill then please show your support by visiting this link and completing the simple and quick process of sending an e-mail expressing your support for the bill to the leaders of the three main political parties. The more support shown for the bill by the public the more likely it is that the bill will successfully progress to the next stage. Thanks for your help!



My view on complementary therapies

I'm surprised it's been so long since my last blog post, even though I'm not working the time goes surprisingly quickly! I've been feeling reasonably well over these last ten days or so. The most significant problem I've experienced is nausea which has been a frequent problem. Aside from that I've also been having night sweats which haven't helped with the quality of sleep that I'm getting. My pain continues to be very well controlled which is a major plus point and I've also had less fatigue than I was getting three or so weeks ago.

 

My next scan is booked for Friday this week. I should get the results sometime late next week. Katie and I are really unsure about what this scan will show. On the one hand, my abdominal symptoms that were causing me a lot of problems a month or so ago have improved tremendously however I now have quite a number of metastatic tumours close to the surface of my skin, none of these have shrunk since I've been on the latest treatment, some have got larger and a couple have appeared since I started this treatment. We have a potential new drug lined up if the Pazopanib is not working but we need to discuss our optoins further with my oncologist when we see him on Thursday this week.

 

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Those of you who know me well will not be surprised to read that I'm somewhat cynical about complementary and alternative therapies. A complementary therapy is one that can be used to complement conventional treatments whereas an alternative therapy is one that is used instead of conventional treatments. 

 

Last week, as part of a well being course Katie and I attended, we saw a presentation from a complementary therapist. She was promoting aromatherapy, reflexology and reiki. Aromatherapy involves the use of essential oils extracted from plants, these are usually massaged into the skin in diluted form. Reflexology uses foot massage. Practitioners of reflexology believe that different areas of the feet are linked to the different organs of the body which can be stimulated by massaging the corresponding areas of the feet. Reiki practitioners believe that they can positively adjust the bodies energy flows by touching the patient or by holding their hands just above the patient's body. The therapist recommended these three therapies for helping seriously ill people to relax, to feel less stressed and anxious and to feel more positive. She also said that these therapies could help alleviate sleep problems and reduce pain and other symptoms.

 

Even though I'm cynical about many of the claims some make for complementary therapies, I can see that these therapies could be of use in improving someone's sense of well being. Each therapy generally requires one or more 'one to one' sessions between the patient and the therapist. These sessions are conducted in relaxing surroundings and involve some form of touch or massage which is something most people find pleasant. People enjoy being pampered and tend to feel quite positive afterwards. There is also the possibility that these therapies could trigger a placebo response. The placebo effect is very powerful and can produce significant positive changes in a person's perception of their condition.

 

Whilst I'm convinced that the therapist that Katie and I heard speak had nothing but good intentions, in describing the therapies that she was promoting she said little about the limited scientific evidence for these therapies and she made some claims that are not substantiated by properly conducted research. For instance, she stated that in reflexology the link between areas on the feet and specific organs in the body has been proven, which it has not. In my view, it would help patients if therapists were fully open about any aspect of their offerings that are not supported by scientific evidence. If a therapist were to proactively disclose this information this would help to establish their integrity and might make cynical people like me more likely to try these therapies.

 

For anyone considering using a complementary therapy in the treatment of cancer I recommend reading this section of the Cancer Research UK website. If you are interested in the therapies mentioned above then click on the links below to see what Cancer Research UK has to say on each of these: aromatherapy, reflexology and reiki. I think the Cancer Research UK commentary on these therapies provides exactly the kind of information, including the scientific support for the various claims for these therapies, that therapists should be giving to potential patients. 

 

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My main challenge in getting out and about continues to be my limited mobility, I still find that walking any distance generally causes me to feel very nauseous. I was really pleased then when Katie and I met some friends of ours at Stourhead and I managed to walk far enough to be able to enjoy the landscaped garden and to take some photographs. The rhododendrums were in bloom and the trees were looking fine in their new foliage. Here are a couple of the photos.

 

 



A very welcome improvement

Over the last ten days or so I've noticed a number of improvements in how I'm feeling. My pain is still well controlled, the fatigue that was becoming an increasing concern for me has gradually begun to ease and my appetite has improved a little. I'm feeling much more energetic than I've been for a while and I'm experiencing less nausea too. Taken together I really feel like I've taken a step forward in comparison to how I've been these last weeks. Just like so much about my illness I can't offer any real explanation for this improvement in my condition. I'd like to think that it indicates that the pazopanib is working, but I'm trying not to get too excited as only a couple of weeks ago I was pretty sure it wasn't! I'll find out for certain when I get the result of my next scan in three or so weeks time.

 

Not only have I been feeling better these last few days but the weather has also decided to perk up too. This has given Katie and I the chance to get out of the house a little, I've even taken my camera out a few times. We've visited a couple of very nice gardens, I can particularly recommend the 'secret gardens' at Kilver Court if you ever happen to be in Shepton Mallet. Aside from that we've been putting our BBQ to good use, sitting in the garden in the early afternoon sun is a very nice way to while away a couple of hours!

 

Here's a photo of Kilver Court:

 

 

 

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Those of you who read my last blog post regarding Archbishop Mennini's recent intervention on the Assisted Dying bill may be interested to know that Dignity in Dying, the charity campaigning for the bill to be passed into law, decided to share my blog entry on their website (click here to view). I'm really pleased my blog entry has been able to reach a wider audience and to help support Dignity in Dying in this very important campaign.  

 

 

Disagreeing with Mennini

There's an Italian seeking to block the progress of a new Bill that is due to be debated in Parliament soon. You may be relieved to know that the Italian concerned is not Silvio Berlusconi, perhaps you have not even heard of him, his name is Antonio Mennini. Mennini is the Pope's representative to Great Britain and the Bill in question is Lord Falconer's Assisted Dying Bill.

 

I've written before about my support for this Bill which, if is it passed into law, will give terminally ill people the right to have a choice about the timing of their own death. It will allow a terminally ill person to request a doctor to prescribe for them a lethal dose of medication. The only person permitted to administer this medication will be the terminally ill person themselves. The aim of the bill is to offer terminally ill people a way to avoid the pain and suffering sometimes associated with the period before death.

 

The Bill includes many safeguards to protect vulnerable people who may fear that the changes in the law could be used to bring their lives to an early end without their consent. The authors of the Bill looked at other countries in which similar laws have been operating successfully and safely for several years in order to understand how best to construct these safeguards.

 

Archbishop Mennini recently spoke at a plenary meeting of the Bishops' Conference of England and Wales and used that occasion to encourage the audience to work against the Bill. The Catholic Herald has reported the Archbishop's speech in full on their website here.

 

I understand that the Catholic Church's major objection to the bill is one of principle, namely it holds that life is a gift from God and is sacred from conception to natural ending. No doubt this is a view that is held sincerely by many religious people, however it is by no means universally accepted. As an atheist I don't believe that life is a gift from God. In respect to the terminally ill I believe that there are certain, limited circumstances, where an individual has the right to decide whether or not they wish to end their life.  

 

I respect Mennini's right not to wish to make use of the facility provided by this Bill. If the Archbishop would not want the right to make a choice about the timing of his own death should he be terminally ill then I would fully support his entitlement to this position. However, in his words I see no respect for my own wishes or for those of many other people in my position. If the Bill is passed I will be able to make my choice and he will be able to make his, if the Bill is defeated then I will be denied my choice whereas his will still be available to him.
  

The Archbishop says nothing about the minority of terminally ill people who today undergo terrible and sometimes prolonged suffering before they die. Reading his objections to the Bill it would be easy to forget that these people exist. As someone who is terminally ill with cancer and who has seen close relatives suffer and die from this disease I have a very personal stake in the success of Lord Falconer's Bill. I consider it strong evidence of the weakness of Mennini's argument that he discusses this issue without once mentioning the position that I and many others find ourselves in. Are we so insignificant that he cannot find a moment to even acknowledge us?

 

If you would like to find out more about Lord Falconer's Bill on Assisted Dying or support its adoption please visit the website of 'Dignity in Dying'.

 

 

 

 

 

  

Patched up

It's nice to be able to write that I've been feeling better this week. On Monday my hospice nurse and my doctor decided that I should start using pain killing patches to help control the pain I'd been experiencing. These patches are about the size of a postage stamp and adhere to the skin through which they slowly release a constant dose of medication. When I do get problems I take additional pain killers which I've found work well in combination with the patches. The control of my pain is definitely better now than it was a week ago. 

 

I'm still experiencing fatigue although this is very variable and generally goes away once I've had a snooze. I'm also finding that any kind of exercise makes me feel nauseous or causes pain in my abdomen, chest and back. Even simple things like doing the vacuum cleaning or going for a walk seem to have this effect. I'm feeling guilty because I can't help Katie with the chores though she's being very good about this - she's a star.

We've signed up for a course at the hospice entitled "Palliative Rehabilitation Programme", it looks at techniques for managing the physical and psychological issues faced by people in my situation. Hopefully it will provide some useful ideas on how to minimise symptoms. 

 

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I've been watching the BBC's latest natural history series, "Monkey Planet". I find it amazing that wildlife film makers can still find extraordinary examples of animal behaviour that have probably never been filmed before. This series is full of film illustrating the intelligence and complex societies of primates.

Watching "Monkey Planet" got me thinking about some of the best encounters Katie and I have had with wild primates. In 2010 we were lucky enough to visit Uganda. Many people go to Uganda to see Mountain Gorillas. Seeing these animals in the wild is an experience that is never to be forgotten, there is an air of gentleness about them but I was also constantly aware of the tremendous strength and power they posses. This photo was taken in the fabulously named 'Bwindi Impenetrable Forest':

Seeing the gorillas was a special experience but for me the highlight of our trip was going chimpanzee trekking. There is something about observing wild chimps that I found quite unnerving, they are like humans with the social restraints removed and seemed to me to provide a mirror on human behaviour in which both the worst and best elements are highlighted. Here are a couple of chimps showing their nicer side, two brothers playing in Kyambura Gorge. To be within just a few feet of them as I took this photo was one of the best wildlife encounters I've ever had.