Monday, 24 November 2014

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.

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.