No more bright side

I'm very sorry to say that Paul died yesterday morning. Unfortunately the antibiotics couldn't keep his infection under control and he slipped away peacefully at about 8:30am.

In the spirit of Paul's blog (and him being a football fan) it only seems right to sign off with

"They think it's all over.....it is now"

Update

Katie here again. The doctors think Paul's condition has improved slightly from yesterday. We also had a test result back that indicated what the infection is (PCP Pneumonia). The doctors were already giving Paul antibiotics for this so we are continuing with these and hoping for further improvements. Keep your fingers crossed.

Difficult times

Katie here. Unfortunately Paul is unable to post because his condition has deteriorated significantly. His antibiotic regime was changed as he was making no progress but this has yet to show any improvements. We are still holding out hope but the doctors have made it clear that things are very serious and there is a high chance that he will not recover. Paul is on oxygen and is sleeping almost continually - showing very little sign of distress. Many thanks for all the inquiries about his condition and the offers of help and support. I will keep you posted.

Manic Monday

I think I can justifiably call this a crazy couple of weeks, at least on the medical front. I'm writing this from the oncology ward in Bristol so I've got no excuse about not having time now. 

You may recall that Katie and I were getting used to me being unable to walk any distance beyond a couple of hundred yards. We've hired a mobility scooter which has been invaluable in allowing me to get around central Bath. We saw the pain consultant at the hospice about my mobility problem and she gave me a new drug that she had a small hunch might help. I started on a very small dose and increased this over a number of days. On Sunday 16th Nov we had some friends down and decided to go to a pub in central Bath for lunch. I was going to use the wheelchair but was feeling good so I decided to try walking to see how far I could get. I was astonished to find that I was able to walk all the way to the pub, the best part of a mile. Some days I've hardly been able to walk around the house so this represented an incredible advance. 

Last week we stayed in a holiday rental place between Chepstow and Monmouth. It was a really beautiful converted chapel, the dining room had some incredible stained glass windows, unfortunately the pictures are still on my camera and I can't access them from here! It was as close to the hospital in Bristol as home which makes us feel comfortable. 

On Thursday we popped back over the bridge for a consultation with the oncologist. We discussed what we'll do next if the gem/tax chemotherapy doesn't work. The oncologist said his recommendation was that I had no further treatment. I've always been determined not to go pursuing treatments that have very little chance of working, I've even spoken with the oncologist about this, but his recommendation really shook me, it felt a bit like the medical profession giving up on me. I felt very down for the next day or so. We're still looking for a further treatment we can try, but it must be one with no or very few side effects. We are hoping we can convince the oncologist to support us in trying one of these. Katie and I feel that we want one last spin of the roulette wheel. 

I was feeling ok over the weekend apart from a cough I'd developed. The coughing was accompanied by some breathlessness. This morning within 5 minutes of waking up I was really struggling to breath and the coughing was making this worse. I've never had breathing problems and I found the whole experience really unpleasant and very scary. I was due for a blood transfusion at 9am this morning at one of Bristol's smaller hospitals so Katie and I went there as we knew they'd advise on my breathing issue. The nurse looked at me and told us to go straight to the acute unit in the Oncology centre. 

The doctors in the oncology centre were clearly concerned by how I was and I've spent the day having tests: chest x-Ray, abdominal ultra sound scan, ECG, arterial blood gas, blood tests, physical examinations, an echo cardiogram and no doubt I've missed some out! At this point their view is that I have heart failure caused by a combination of a pulmonary edema (fluid on and around the lungs) and an infection. I'm on antibiotics, oxygen and a diuretic to try and move some of the fluid. There is a suggestion I might be allowed home tomorrow but I'm not betting on this as I still get out of breath with any physical activity. I'll post again when there are new developments.

Time for a new hat

I'm now well into my second cycle of gem/tax chemo and I'm still finding the side effects to be quite manageable. The most concerning issue so far is that a blood test earlier this week showed that I have anaemia. I've been feeling quite well so it was surprising to discover this. I'm scheduled to have a blood transfusion early next week which should resolve the issue for now at least. Despite the anaemia I was still able to go ahead with the chemo which was my main concern. I'm still getting fluid retention but it isn't causing me serious concern at this time and most of my other problems are cancer rather than chemo related I think.

One predictable impact of the treatment has been hair loss. I lost my hair when I had the drugs back in 2011 and I've now lost it this time around too. As a man who already had thinning hair I don't really find this side effect to be too troubling. I've bought a new hat to wear, apologies to those who have already seen this on my Facebook page but here's my temporary new look!

We're currently still working on ways to improve my mobility. I'm taking a drug that seems to be having some positive impact so we're slowly increasing the dose to see where it delivers maximum effect. Progress is a little slow but I do feel things are moving in the right direction.



Mobility scooters, hand rails and stair lifts

I'm now into the second cycle of this current chemotherapy and, so far, it has been a lot less problematic than I anticipated. I was really concerned that I'd be suffering from a lot of side effects on top of the symptoms that the cancer causes but this hasn't been the case.

 

When people ask me how I'm feeling I find myself answering  them solely in terms of the chemotherapy side effects; I've come to view the cancer symptoms as something separate and often forget to refer to them although they are having quite an impact on my quality of life. For example, not only am I unable to walk more than a couple of hundred yards I am also unable to stand up for more than fifteen or twenty minutes at a time without developing severe abdominal and chest discomfort. This is very limiting, it has stopped me from doing most basic household chores and has also prevented me from cooking, something I was really enjoying a few weeks ago. My legs continue to get weaker and I get out of breath climbing stairs.

 

Over the past couple of weeks Katie and I have been to a number of medical appointments most with a view to tackling the cancer symptoms or to finding ways of coping better with the limitations they impose. I've hired a mobility scooter so that we can get into town and we've been looking this week for a reclining chair that will be more suitable for me than the sofa. I find it a little surreal to be discussing extra stair rails, hand rails for the shower and stair lifts with an occupational therapist although I can see that these are all things I may require soon if things continue as they are.

 

Katie and  I continue to be amazed by the standard of care provided by the various specialist staff from the hospice. They don't just offer advice, they agree specific practical actions with us which they then take ownership of and make happen. I struggle to think of any other professional organisation that has consistently shown this level of proactivity and focus, it makes things as easy as they can be for Katie and I.

 

***

I've not been out with my camera in the last week, the weather hasn't been at all favourable. I've been looking back on some of the photo's from this summer and came across a couple taken from the visits we've made to various small harbours around the coast. Here are a couple of brightly painted boats in Folkestone harbour and some crab pots from Bridlington; we cooked ourselves a couple of great meals with crab and lobster that we bought from the harbour side.  

 



A dash of autumn colour

I'm due to start my second cycle of gem/tax chemo on Thursday so today is a good time to review how my first cycle has gone. One of my main concerns was that this chemo would leave me too poorly to see family and friends. This has turned out to be unfounded so far, Katie and I have had to cancel very few of the plans that we'd made and I've been well enough to really enjoy seeing people, we've had some really good times during this period.

 

Unfortunately there have also been a couple of worrying developments. My mobility has continued to decline and for the last week we've been hiring a wheelchair. Katie tells me that it's hard work pushing me along Bath's hilly and roughly paved streets. There's also the speed and degree to which my thigh muscles are becoming weaker. When I had gem/tax chemo back in 2011 it took five or six cycles for this weakening to become apparent. Now, after just one cycle, my legs have already lost a lot strength. 

 

On the bright side we've improved the management of my pain which  had begun to be a worry and we're also seeing a mobility scooter hire company on Tuesday. A scooter should improve my mobility.

 

I start the second cycle of treatment in a few days time. Katie and I had a good chat with my oncologist to consider whether I might benefit from further reducing the dose that I'm receiving, I've decided to push on with the current dose however. I will have a scan after cycle three and I'd like to be sure that we've given the chemo the best chance of working.

 

***

Friday 7th November is another important date in the progress of Lord Falconer's Assisted Dying Bill. The Bill will be discussed at a committee of the House of Lords. At this meeting Lords will be able to propose amendments to the Bill many of which will be helpful in shaping and agreeing its detail. However, some of the Lords who oppose a change in the law may seek to use this as an opportunity to delay the Bill's further progress. Polls continue to show that a clear majority of the UK population support the introduction of Assisted Dying legislation. Those who oppose the Bill do so whilst disregarding these views. You can support the Bill by joining Dignity in Dying.  

 



***

During a recent visit from my mum we took a trip to the National Trust's Stourhead garden. This was the first time I used a wheelchair so whilst I got a scenic ride around the lake Katie got a good workout propelling me along! Here are some of the autumn colours, it's amazing how few days there are each year when the colours are perfect for photography and the sun is out. We were a little early for the best of the show and might return for a second attempt in a few days time. 

 



So far, so good with the chemo

I had my first infusion of the new course of chemotherapy last Wednesday, the process went without any hitches and in general I've been pleased with the way that I've been feeling. I'm experiencing some fluid retention but this seems to have stabilised in the last couple of days and I'm hoping it may start to decrease ahead of my next infusion on Wednesday. It's early in the first cycle of treatment however and I know that I might not be this lucky in the next week and that in my previous treatment with these drugs I experienced more significant issues as the cycles went on.

 

My main problem at present relates to my mobility. I'm now finding that I'm sometimes unable to walk more than two or three hundred yards before I develop severe discomfort and some pain in my chest, tummy and lower abdomen. On a good day I might do better than this but good days seems to be rarer than they were a month ago. I'm considering how I can best prevent this problem from stopping me from getting out and about, I have a feeling I'll be writing about test driving a mobility scooter soon!

***

There's a very good bill that is currently seeking to pass into law that was in the news last week, it's the 'Medical Innovation Bill' and is designed to allow doctors to prescribe unlicensed drugs to cancer patients for whom existing treatments have failed. Whilst there are a number of genuine concerns about the safety of such drugs, the tolerance for risk amongst patients with a deadly disease and no licensed treatment options available to them is much higher than amongst 'normal' patient groups.

 

I've had some recent experience closely related to the issue the bill seeks to address. There is a treatment I'd like to consider in the future which is not approved for use in my cancer. Even though this treatment involves using drugs that have been safely taken by large numbers of patients with different cancers and conditions my oncologist explained that it would be difficult for him to prescribe as it hasn't been tested in Leiomyosarcoma or in the drug combination I'm interested in trying. The frustrating thing here from my point of view is that if I were denied access to this treatment then I'm not aware of any alternative option that I'd be willing to try.

I would very much like to see this bill passed by parliament as it will address a need that is felt by many people with advanced cancer. You can read the BBC story on the bill from last week here or the very short text of the bill itself here.

***

A few weeks ago we visited Canterbury. I've always enjoyed visiting cathedrals and attempting to take photo's of their interiors so I was keen to spend some time at Canterbury's. Here are a few photo's (click or double click to see larger versions):

 

'Truthloader' YouTube interview

I was recently interviewed by Truthloader, an internet based subsidiary of ITN. They wanted me to talk about my experiences with my cancer and about my support for assisted dying. You can view the video at this link.

 

The quality of the video isn't great as we recorded this via Skype over our broadband connection which we've been having some issues with lately.

New chemo treatment begins tomorrow

I'm starting my next course of treatment tomorrow with my first infusion of gemcitabine. I'm pleased that the oncology centre has managed to schedule this so soon as I'm keen to make a start. This will let me evaluate the level of side effects and get the drugs to the growing tumours as soon as possible.

 

A couple of weeks ago I was finding it difficult to accept gem/tax as something I was willing to take. Intellectually I could see that it was the treatment option for which the best case could be made but emotionally the thought of taking it with all the attendant side effects was causing me real anxiety and concern. Once I got the confirmation that the scan reports showed that the cancer was growing again the way I feel about this treatment changed dramatically. I'm now even more convinced that it's the right option for me and I'm feeling much more positive about giving it a try. Psychologically I feel like I'm in a much better place to be starting the treatment than I was just a week and a half ago.

 

Assuming the infusion goes ahead tomorrow I probably won't post an update until Sunday or Monday, that will give me time to understand something of the side effects across the first few days of the cycle. I will be due to have the second infusion, consisting of both gemcitabine and docetaxal, on Wednesday next week.

 

 



Another roll of the dice

My oncologist called me yesterday afternoon and gave me the results of the scans I had two weeks ago. The good news is that the brain scan showed no change. We'd had some concerns that it might show something more sinister as I've been somewhat unsteady on my feet for a few weeks now and we weren't sure if this was caused by a brain problem or by the muscle wastage I've been experiencing as a result of taking steroids. The bad news is that the scan of my torso confirmed that the cancer is growing in my liver and in my abdomen. There are also some additional tumours showing in my lungs. It's clear that my most recent treatment, cyclophosphamide, has ceased to be effective.

 

Waiting for the scan results has given us time to agree a clear plan for my next treatment. I will start on a combination of two well established chemotherapy agents, gemcitabine and docetaxel (gem/tax for short). As mentioned in my previous blog post I had six cycles of gem/tax back in 2011 and have concerns about whether or not I will be able to tolerate the side effects this time around. I'm now waiting for an appointment for the first session. 

 

My oncologist proposes that I have three treatment cycles before having another scan to determine how effective the drugs are being. If there are no delays this scan will take place around eleven weeks after I have my first infusion. In the meantime my oncologist thinks we will be able to get a good idea as to whether the treatment is working by monitoring my liver function. My general health should also provide an indication however it is very difficult to separate problems caused by the cancer from chemo drug side effects.

 

If the new treatment doesn't work there's a high chance that I won't be able to have any further treatment afterwards. The majority of systemic anti-cancer drugs require the patient have a sufficient level of liver function, it is very questionable whether my liver function would meet that requirement; there's a chance then that this could be my last roll of the dice.

 

I plan to focus now on what I can do to enjoy life during the treatment. I've got a number of books I'm looking forward to reading and I'm regressing to a younger version of myself by playing a football management simulation game on my iPad (I was completely addicted to this game on my PC about twenty years ago). These might not sound too exciting but if I'm only feeling well enough to sit on the sofa they're an attractive alternative to daytime TV! I'm really hoping that I'll remain fit enough to get out and about, we still have a lot of new restaurants in Bath to try and, on the photographic front, I have ambitions to visit Stourhead for the autumn colours, Gigrin Farm to photograph red kites and, later in the year, Slimbridge to photograph the visiting Bewick's swans.

 

***

 

A month or so ago I went along to Bath races to take some photo's of the action. I'm not really interested in horse racing but the horses look very impressive running at full speed for the line. Here are three of my favourites (click/double click the images to view larger versions).

 

 

 

An interim update

When Katie and I met my oncologist yesterday we were expecting to get the results from my latest CT scans, unfortunately the consultant radiologist has not yet written the scan reports so we'll have to wait a few more days. We've only experienced delays like this once before but given how vital scan results are to people in my situation I do think this is twice too often.

 

In the absence of an expert radiological opinion my oncologist has taken a look at the scans and feels that they show the cancer progressing. This view is consistent with both the symptoms that I've been experiencing and with a decline in my liver function that  my recent blood tests indicate. Assuming my oncologist's interpretation of the scans is confirmed I will have to move to a new treatment.

 

We've agreed that the treatment most likely to benefit me is a course of chemotherapy using the combination of drugs gemcitabine and docetaxel. This would be a repeat of the first chemotherapy regime I had following my diagnosis back in April 2011. The drugs caused the cancer to shrink slightly and then halted any growth for several months. I only had six cycles before switching to another drug and there was no indication that my cancer had begun to develop immunity to gemcitabine/docetaxel during the short time I was using it. This gives us hope that the treatment will shrink or stop the growth of the disease for a while.   

 

Unfortunately gemcitabine/docetaxel is the chemotherapy regime that has caused me the most problematic side effects. I had extensive fluid retention that got progressively worse with each cycle and I was reduced to spending most of my time sitting with my feet up on the sofa. For those who have never experienced it, fluid retention may sound like an inconvenience rather than a serious problem, however it can be very uncomfortable and if the fluid is retained around the chest it can contribute to heart failure. I've already had some issues with heart failure back in 2013 so I may be prone to it. In addition to fluid retention I also had a wide range of additional side effects including reductions in the strength of my immune system, constipation, nausea, muscle weakness and flu like symptoms. Not surprisingly I'm finding the prospect of this treatment  rather grim and am currently looking hard to find some enthusiasm for progressing with it!  

 

We haven't taken any definite decisions at this stage as we need the radiology reports and my oncologist also has to confirm that my liver function is within the parameters permitted for receiving these drugs. We should have this information and a confirmed way ahead next week and I'll post a further update then.

 

***

 

I'll end with some colour, I photographed these flowers in the wild flower field at Hartley Farm in Winsley, near Bath (click or double click for larger versions).

 

 

  



Spare fairy godmother anyone?

Last week we spent a few days down in Kent, staying just outside of Canterbury. One thing I always associate with Kent is beautiful historic buildings and castles surrounded by moats. There seem to be a lot of examples of such buildings in that county, Scotney and Leeds Castles spring to mind. I've always thought these places looked like the ideal settings for medieval tales of swash buckling and romance or for a fairy tale. As a child I collected postcards and I recall my dad giving me a card showing Bodiam Castle (also in Kent), I didn't know such places existed outside of films. Anyway whilst travelling to Canterbury we visited another moated Kent house, Ightham Mote. This is a stunning example of a beautiful and historic building, 700 years old in parts.

 

 

 

One of the more curious features at Ightham Mote is the dog kennel that you can see on the right of the courtyard below (just behind the two benches), apparently it's the only grade I listed dog kennel in the country. It dates from around 1890 and originally housed 'Dido', a female St. Bernard.

 

***



Having mentioned fairy tales, if anyone has a fairy godmother they could lend me that would be appreciated. Over the last week or so I've become increasingly sure that my current chemotherapy is no longer working and that the cancer is growing again. I've continued to have increased discomfort and some pain together with constipation, fluid retention, increased fatigue and a perception that the small tumours in my skin are growing. I have a scan scheduled for tomorrow with the results due on Thursday next week. If the scan confirms that the cyclophosphamide isn't working then I face a very difficult choice. The treatment options available to me now are extremely limited, none of them really offer much hope of working and most of them are likely to cause unpleasant and potentially serious side effects. A little bit of magic from a fairy godmother might be the best hope I have of a better option presenting itself in the next week or two!

 

Yesterday I had some minor surgery to remove three tumours from the right side of my scalp. It was done under local anaesthetic and was painless once I'd had the initial injections to freeze the area. The procedure has made quite a mess of my head, I look like I've come second in a drunken pub brawl. I've been told that I can't wash my hair for three days so I'll be making extensive use of a hat to avoid scaring children in the meantime! The stitches come out in two weeks time and my hair will have hopefully regrown enough to begin covering the area by then too.

 

 

 

 



Ups and downs but still having fun

I've had a few ups and downs since my last post. I've been experiencing more abdominal and chest discomfort and low level pain, I've also had a couple of days when I've had more severe pain and one morning when I had extensive discomfort in my chest that made walking quite a challenge. These problems are probably caused by tumours pressing on various organs and nerves in my back, chest and stomach. I've begun taking ibuprofen regularly to try and reduce any inflammation as this should help. On a positive note when I've had problems with pain my medication has done a good job for me.

 

Despite these problems the last ten days or so have been really enjoyable. Katie and I have spent a lot of time with friends and family and that's been very relaxing and good fun too. A lot of this time has been spent eating, drinking and sitting in various sunny gardens which are activities that never go amiss with us!  We also spent a night in Cheltenham and enjoyed pottering around the eclectic collection of the Wilson Museum. 

 

I've found it interesting to reflect on how I've been feeling over this time. I'm sure that if I'd experienced my recent issues during a period in which we had no social activities planned I'd have found myself focusing on my symptoms, something that would have made me feel somewhat down. This makes me realise how important it is to find pleasant things to do when feeling less than well, any enjoyable distraction is to be welcomed. There are, of course, limitations to this. I know that sometimes I'll be feeling too poorly to be able to do anything other than sit on the sofa or go to bed but at present such days are thankfully very rare.  

 

***

 

Last week the Tour of Britain visited Bath for the start of one of its stages. Katie and I are big armchair cycling fans even though neither of us actually ride and we found a good place to watch the peloton flash past. Here are some photo's. First, this is Team Sky's Bernie Eisel, although this shot was taken near to the start of the stage he already looks to be working hard!

 

The leader of the race at the start of the Bath stage was Michel Kwiatkowski, here you can see him in the leader's yellow jersey.

I was hoping to get a good shot of Sir Bradley Wiggins or Mark Cavendish but I hadn't anticipated how fast the riders would flash by. On reviewing the photo's Katie spotted that I had got a chance shot of Cavendish, he's the ninth rider in this group immediately behind the first rider in a green jersey (click or double click on the image to see a larger version).

 

 

    

Some minor surgery

Over the last twelve months I've had a number of small tumours grow close to the surface of my skin. These have appeared in various places including my chest, under my left arm, on my right arm and on my head. For the most part these small tumours do not cause me a problem unless I accidentally bump one on something in which case they can be quite painful for a few minutes! However, the largest one on my head has made it impossible for me to sleep on my right hand side, any pressure applied to it causes significant discomfort. The tumour is large enough to be visible through my hair and will become quite unsightly if it grows much bigger. I've decided to get this tumour removed and saw a surgeon earlier this week who confirmed that it should be a routine procedure performed under local anaesthetic. I'm due to get this done in a couple of weeks time and I'm hoping I'll soon be able to sleep on my right side again.

 

Katie and I had a routine appointment with my oncologist yesterday. We are continuing with the cyclophosphamide until my next scan which is due towards the end of this month. I've been having a few more symptoms the last week or so in the form of abdominal and chest pain and discomfort. This has been pretty mild and hasn't stopped me from doing anything but is concerning in terms of what it may suggest about the ongoing efficacy of the current treatment. I've also continued to have difficulty sleeping so I've stopped taking melatonin to see if that helps. 

 

My oncologist discussed with us what we want to do next if the forthcoming scan shows the cyclophosphamide isn't working. The options that are available really are very limited now, I think I need to do some more concentrated research in the coming weeks to make sure I've identified those things that could be worth a try. My oncologist is going to consult with colleagues to see if there are any new ideas or trials that might be appropriate.

 

***

 

During the summer Katie and I have visited a number of gardens. I like taking photo's of flowers and Katie has a strong interest in gardening so we both enjoy these trips. Here are three shots from recent visits, the first is from the Courts Garden in Holt, Wiltshire and the second and third are from the RHS Rosemoor garden in Devon.

 

 

 

 

A bright side to the end of summer

One compensation for the end of summer is that it marks the start of the rugby union season. Katie and I are supporters of Bath Rugby and we often go and watch their home games. Bath had a promising but ultimately disappointing season last year as they came up just short of success in the league and cup competitions, we're hoping for better this time around.

 

Last week they played a pre-season friendly against Llanelli Scarlets. I like to go along and take photo's at the friendly games as it's possible to get a good position in the stand without getting in the way of other supporters and interfering with their enjoyment of the match. Here are a couple of the photo's, first Bath's Carl Ferns on the attack:

 

 

Bath successfully claim the ball at a lineout:

Llanelli's Steven Shingler kicks a conversion:

 

***

 

My health status hasn't changed in the last week or so, generally I'm feeling pretty good with just a few minor issues. I've been having some trouble sleeping for quite a number of weeks now. I'm finding that I have to get up to go to the toilet at least twice each night, any male readers over sixty five are probably saying 'welcome to the club'! I think that one of my tumours presses on my bladder when I'm lying down. Also I wake up between 4am and 5am each morning and find I can't go back to sleep. I'm very glad to have my iPad and the internet to pass the time between then and 7am. Katie is enjoying the cup of tea I'm bringing her in bed each morning! Despite these disrupted nights any fatigue I'm experiencing is a lot less severe than it has been at some points earlier this year.

 

Overall I'm very happy with how I've been feeling and will be extremely pleased if this continues over coming months.  

   

When science runs out

I've long been fascinated by all things scientific. As a youngster programmes like 'Tomorrow's World', 'Horizon' and 'QED' were some of my favourites and I studied physics and chemistry at school before electing to do a degree in computer science, a decision based more on career prospects than on any strong preference for bits and bytes over cosmology and quantum mechanics (ok, computer science is easier than physics but let's pretend that wasn't a factor).

 

It's not surprising then that I have a strong preference to base all my treatment choices on good scientific evidence. In the field of medicine such evidence is provided by large scale double blind placebo controlled clinical trials. In my case there are four suitable chemotherapy treatments for Leiomyosarcoma (LMS) that most sarcoma oncologists would view as well supported by trial data. Unfortunately I reached the point some months back of exhausting all four of these treatment options. This leaves a difficult problem: how to make treatment decisions in the absence of compelling scientific data?

 

Over the last few months I've evolved the following criteria to answer this question: 

• Is there some scientific evidence supporting the use of the treatment that makes it relevant to my case? This evidence is usually in the form of lab based experiments, trials on animals (usually genetically engineered mice) and small scale, non-randomised or non-placebo controlled trials. None of this evidence can be considered sufficient to demonstrate the efficacy of the treatment but it is at least indicative that it could be beneficial.
• Does my oncologist consider the treatment option to be a valid and sensible choice given my condition? I've been extremely satisfied with the advice and care provided by my doctor and I really like the consultative way in which he approaches treatment decisions. I'd be loathe to try any treatment that he felt was inappropriate.
• Is there anecdotal evidence supporting the use of the treatment? Anecdotal evidence is not scientifically valid when making treatment decisions, however it is hard not be reassured when hearing that other LMS patients have tried a treatment and had some success whilst on it.
• Is the treatment likely to cause only very minor side effects? This is really important to me, I don't want to try speculative treatments that are likely to have a very significant negative impact on my quality of life.
• Is the treatment cheap and readily available? Some treatment options that I might decide to use are not covered by the NHS. Given that the efficacy of any treatment option is very uncertain I don't see the sense in spending significant money when cheaper, equally promising options are available.

The drugs and supplements I'm currently taking as part of my treatment each individually meet these criteria (cyclophosphamide, metformin, melatonin and PSP). I'm sure there are many other ways to make choices about treatment but the above gives me a consistent way to stay as close to the scientifically supported as I can whilst accommodating my requirements on cost and side effects.

 

***

 

Last week Katie and I were in north Devon, one of the highlights was the chance to photograph badgers at Devon Badger Watch. Photographing badgers is made particularly difficult because they don't usually emerge until the light is fading. Here are some shots from our visit when cloud and rain made the light in the wood almost too low to shoot in (click or double click the images to view at a larger size).  

 

Here's a  badger first emerging from the sett:

 

 

Out and about:

 

 

'I know there's a peanut hidden in here somewhere':

 



 

 

A surprise scan result

Katie and I met with my oncologist yesterday to get the results of the scans I had last week. We weren't feeling very optimistic given that I've had a few more issues recently. We were incredibly surprised and pleased then to hear that the scans show that my cancer has been stable since I started taking the most recent treatment, metronomic cyclophosphamide. The cancer was growing quickly before I began taking this drug so to have halted its progression is really positive.

 

This is the first good scan result we've had since September last year. It really was pretty stunning to hear the good news and it was quite difficult to take in immediately. We shouldn't get too excited however as it is only eight weeks of stability so far. Research papers and anecdotal information suggest that some people have six months of stability on this treatment, that would be very nice indeed! I will keep taking the cyclophosphamide and have another scan in eight weeks time.

 

There is research that suggests that it is useful to take other drugs and supplements that have anti-cancer properties at the same time as taking metronomic chemotherapy. I'm already taking the diabetes drug, metformin, for this reason. For the last couple of weeks I've also been taking melatonin and I am now going to start taking PSP (polysaccharide-peptide) too. PSP is an extract from the Chinese mushroom Coriolus Versicolor. There are some studies that show that PSP can slow the growth of sarcoma and lung cancer. The evidence for the beneficial effects of PSP is far from conclusive at present, however it is not thought to have harmful side effects and the risk of taking it is, therefore, low.

 

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I recently spent a day in a hide in Worcestershire photographing kingfishers. These are such colourful and characterful birds it is always a pleasure to spend time observing them and they make for great photographic models (click on the images to see larger versions).

 



A hundred thousand genomes

You may have seen news coverage last week of the '100,000 genome project'. This is a UK initiative which will map the genomes (the genetic code) of 100,000 individuals with rare diseases. The intention is to build a data set that allows researchers to identify the genetic mutations that are important in a range of serious illnesses. The project is a massive undertaking with ambitious timescales, the plan is to complete the project in four years.

 

Cancer is a disease that is fundamentally related to genetic mutations so the project should be of particular value in identifying new treatments. There are already a number of oncology drugs that work by targeting known genetic mutations in some specific types of cancer, for example the drug imatinib revolutionised the treatment of Gastrointestinal Stromal Tumours (GIST for short) by targeting a genetic mutation that is essential to the growth of the most common form of this cancer. Prior to imatinib GIST was extremely difficult to treat as it does not respond to chemotherapy. Imatinib has led to a very significant increase in patient survival times even if it does not provide a durable cure to the illness. For many cancers no genetic targets for new treatments are currently known, this is the case for Leiomyosarcoma, and this is where this project has really exciting potential.

Whilst I'm very enthusiastic about this initiative I do have a concern about some of the bold statements made in the media concerning its likely impact. For instance the BBC quoted Prof Jeremy Farrar, director of the Wellcome Trust, as saying:

 

"We will look back in 20 years' time and think of blockbuster chemotherapy [as] a thing of the past and we'll think 'Gosh, what an era that was'."

 

The history of cancer research is littered with exciting initiatives that seem to offer great hope of significant advances in treatment, however these very often fall short of those initial expectations. 20 years is actually quite a short time in which to take a new treatment from discovery through to widespread clinical use so my personal view is that Prof. Farrar's predication may be somewhat optimistic, but let's look on the bright side, it would be wonderful if he is right.

 

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I had my latest head and body scans last week, I should get the results on Thursday. Depending on what this shows I'll either continue with my current treatment or see what other options are available. In the meantime I've been continuing to have a few more issues with pain and abdominal discomfort. This is not causing me a major problem at present but it does make me feel a little less optimistic about the likely results of the scan than I was two or three weeks ago.

 

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Katie and I and some friends of ours visited the International Bird of Prey centre in Gloucestershire a couple of weeks back. It's a great place for anyone who likes birds and even those less interested will be impressed by the flying displays that the centre runs three times a day. I've visited the centre several times before but I particularly enjoyed this visit as the flying displays featured a number of owls. Here are a few of the images I took.

 

This is a young eagle owl:

 

 

 

Short eared owl:

 

 

 

And finally, an ashy faced owl:

 

 

 

 

 

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.

 

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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.

 

 



 

 

 

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.

 

 

 

 

 



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.

 

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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: