Saturday, 15 November 2014

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.

Saturday, 8 November 2014

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.  

Sunday, 2 November 2014

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. 

Monday, 20 October 2014

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):


Thursday, 16 October 2014

'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.

Tuesday, 14 October 2014

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.

Thursday, 9 October 2014

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).