Cycle thirteen

Earlier this week I had my thirteenth infusion of Trabectedin. The last cycle was probably the easiest one I have had since I started the treatment with this drug back in April 2012. There is no reason that we can give for why cycle twelve was so much better than cycles ten and eleven but the change is certainly welcome! I'm hoping the rest of this thirteenth cycle goes just as well but I know that chemo side effects are a little like investments: past performance is not necessarily a guide to the future!

 

I should have my next scan week of 27th May so that's the next significant milestone regarding my treatment. 

As many readers of this blog generously contributed to my fund raising efforts for Cancer Research UK, I thought you might be interested in some promising new research that they funded that could, in the long term, really help in improving cancer treatment and in running clinical trials. You can read the article by clicking this link. This is typical of the work that Cancer Research UK fund and is a good example of how the funds raised through your donations are spent.  

 

Following the great time I had photographing kingfishers recently I decided to go back to the same farm in Worcestershire to see if I could get some shots of Little Owls. I picked a lovely sunny day but the owls were not very cooperative. I spent ten hours sat in a hide during which time the owls showed up for only six minutes! I did manage to get a few decent images so in the end I was happy with my day:

 

Two years on from my diagnosis

Tomorrow it will be two years since I received my diagnosis of Leiomyosarcoma (LMS). Reflecting on the time that has passed since then, I can't help but feel very fortunate with the way that things have gone. I'm yet to experience any real symptoms from the cancer itself which is more than I could have hoped for given my initial prognosis. Compared to many, my experience of chemotherapy has been positive: the treatment has delivered real benefit by controlling the growth of my tumours and I've had relatively mild side effects. After twenty one rounds of chemotherapy I'm still relatively well.  

 

Another positive is that during the two years that I've been ill there have been some advances in the treatment of LMS. One new drug is now accepted by many oncologists as a useful treatment for people with late stage LMS and there are several other innovative drugs currently being researched. A cure is still a long way off but at least there is tentative progress.

 

It's always easy to find things to be critical about but I've generally been very satisfied with the treatment I've received from the National Health Service. The drug that I've been treated with for the last twelve months would not be available to me if I was being treated under the US health care system and yet it is available freely here. I'm pretty sure that this drug is the reason I'm able to write this blog tonight. I've found the NHS staff to be both caring and good humoured and I can't fault the decisions that my oncologist has made with Katie and I about my treatment.

 

Looking forward, the future is just as uncertain today as it was two years ago, however Katie and I know that we mustn't let this stop us from making plans. Recently we've started to consider making another trip to Africa. This has been a dream of mine since returning from Zambia in October 2011 but in the last few weeks it has started to look more like a genuine possibility. We've discussed this with my oncologist and cardiologist and they both feel that such a trip is medically possible, we just need to find the right window of opportunity and get some insurance in place and we may find ourselves watching the hippo's from the banks of the Luangwa river once again.

 

 

 

 

 

 

 

 

 

 

 

Chemotherapy at home

Following last week's delay I went ahead with my latest chemotherapy treatment yesterday and today. As planned, rather than staying in hospital overnight I had a 'Baxter Infusor' pump fitted that meant that I could return home yesterday before popping back into the hospital this afternoon to have the empty pump removed.

 

Overall my first experience of the infusor has been very positive. Not only is it a whole lot nicer not having to stay on the oncology ward overnight, but I also slept better for being in my own bed. The only issue was that I still had to spend from 9:30am until around 5:00pm yesterday at the hospital. This is a little frustrating because more than 90% of that time was simply waiting around, first for the blood test result, then for the chemotherapy to mixed and loaded into the infusor and then for a nurse to fit it to me. Still I had work to do and a book to read and was able to pop out of the hospital to a pub for lunch, pity I'm not drinking as a beer would have gone down very well! In fact the waiting yesterday would have been pretty much just the same had I been staying in hospital overnight so having the pump didn't cause any additional delay.

 

Given that this first time has gone well I should be able to have all future cycles of this particular chemotherapy at home and that's a big plus for me!

 

 

 

 

 

 

Another treatment delay

I was due to have my latest round of chemotherapy on Thursday, however my platelet count was too low so I'm now scheduled to try again on Monday.

 

This is the first time that I've had to delay treatment due to a low platelet count, in the past the issues I've had with my blood have been caused by low levels of white blood cells. My blood counts struggle to recover following each round of this chemotherapy though my oncologist has told me that people who are on this drug for an extended period often have problems that mean they have to have a reduced dose or longer between cycles.

 

The hospital has now got approval to administer my chemotherapy using a portable pump (a 'Baxter Infusor'). So rather than staying overnight I will now be able to return home after the pump has been fitted. I will then have the pump removed once the chemotherapy infusion has completed. I'm really pleased about this as I'd much rather be at home eating Katie's super cooking than stuck in hospital!

 

In terms of side effects my most recent cycle has been ok, slightly easier than the previous cycle in fact. Having said that, I'm having more days now when I'm suffering from fatigue and feeling generally below par. The ongoing saga of the allergic reaction I've been having to my PICC line dressing hasn't helped with the fatigue as the irritation it causes has given me a few sleep interrupted nights. I'm still waiting to hear more information about my heart condition. I see the cardiologist at the end of next week so I should know more then.

 

Earlier this year I started doing some research into how I could photograph kingfishers. I found a couple of wildlife photographers who have a hide in a suitable location and I spent a day there recently. I was very lucky as the sun shone and the kingfishers were very active. It was as good a day as I've had photographing wildlife anywhere in the world. I'm rather pleased with the results so I'm going to indulge myself by sharing four of the photos that I took, I hope you like them (click on each image to view it at a larger size)!

 

This guy must look in the mirror a lot...





I think this would be a good one for a caption competition, what is that fish saying?

Seeing off a rival, kingfishers are very territorial...
 

Another pose...

 

Once bittern...

One consequence of having cancer is that you never quite know what is going to happen next. Katie and I still find ourselves caught out by the ability of the disease to surprise, something that was most recently illustrated when I got my last scan result (see my post "Scan results" from 14th February).

 

I was reminded last week that my hobby, wildlife photography, shares this propensity for the unexpected. I visited the Wildfowl and Wetland Trust reserve at Slimbridge with the intention of photographing some of the common woodland birds that visit a feeding station there. On the way to the feeding station I decided to quickly pop into one of the hides where, from time to time, a bittern is sometimes seen. Bitterns were once extinct in the UK but are gradually making a recovery thanks to conservation efforts. The population is still small, with just 104 male birds recorded in the country in 2011 and so seeing a bittern is still difficult especially as they spend the majority of their time hidden deep in the reeds and because they are superbly well camouflaged.

 

As soon as I entered the hide I knew that the bittern was around because of the gaggle of photographers all staring intently into the reed bed at one end of the hide. It took me several minutes to locate the bird in the reeds - only the third time I've ever seen one of these elusive members of the heron family. Initially the bittern was obscured by too much undergrowth to provide any photo opportunities, but over the next two and half hours it engaged in a game of "now you see me, now you don't" - very occasionally emerging into more open patches of reed where it could be photographed. Getting some shots of such a rare bird was certainly unexpected and made for a very enjoyable morning.

 

 

On Thursday and Friday last week I had my 11th Trabectedin infusion. As usual the process went smoothly. So far the side effects have been pretty much the same as previous cycles and hopefully there will be no surprises as this cycle progresses.

 

Heart update

Following on from my last post and the discovery that I have heart problems I've now had an ECG, an echocardiogram and seen a cardiologist. The cardiologist is happy for me to go ahead with my next cycle of chemotherapy which is scheduled for the 7th March. This is very positive news and was the most immediate issue we needed to clarify.

 

In terms of what is wrong with my heart the situation is still quite uncertain. The cardiologist said that analysing my echocardiogram results is complicated because of the pre-existing VSD ('hole in the heart') condition that I have (I was born with this, it was partially fixed by surgery when I was around four years old but the hole was not completely closed). He wants to get some of his colleagues who specialise in patients with this type of condition to look at the scan as they will be better placed to interpret the results.

 

Despite the complications he was able to tell that there are some problems with the valves on the right side of my heart, both of these are leaking slightly. He said that this can contribute to fluid retention in the abdomen and legs, something I've been suffering from increasingly of late. I will see the cardiologist in six weeks for a follow up but he will also write to me once he has the opinion of his colleagues.

 

I've continued to have problems with the skin on my arm which has developed an allergic reaction to the PICC line dressing. This has been sufficiently irritating for me to have to go to the hospital twice in the last week or so. I've now got some steroid cream that seems to be helping but that I can only apply to those parts of the skin that are not covered by various parts of the dressing. The skin that is not reachable continues to be irritated although taking antihistamines has helped a little. I have a feeling I'll have to see a dermatologist about this problem as the PICC line needs to stay in whilst I'm having treatment with chemotherapy.

 

This year has got off to a very slow start in terms of wildlife photography but I did get a few shots the other week at Pensthorpe in Norfolk. Here's a Coal Tit, there not as colourful as Blue or Great Tits but are still quite smart little characters:

 

    

Scan results

LMS has a never ending capacity for springing surprises. Katie and I expected our meeting with my oncologist today to focus on the size of my tumours and the side effects I've been having from the chemo, we were pretty taken aback then when the oncologist's opening remarks were that the scan shows that I have heart failure.

 

I must admit that I hadn't realised heart failure was a graduated condition, to me it suggests someone in an intensive care unit wearing an oxygen mask and wired up to a heart monitor. In my case heart failure seems to mean that the function of my heart is impaired resulting in me getting wheezy and breathless especially if walking up hill or having to walk quickly.

 

It seems that my heart problem is related to the fluid retention that I've been suffering from. The previous chemotherapy drug that I was taking, Doxorubicin, is known to be cardiotoxic and the oncologist thinks it may be the cause of my current issues.

 

The good news from the scan is that the tumours appear to be stable, though it seems that the extra fluid I have in my body is making the comparison with the previous scan less straightforward than usual.

 

The plan now is that I will have an echo-cardiogram and see a consultant cardiologist to review my heart condition. I will also have a two week break before my next chemotherapy treatment, hopefully this will give time for me to get rid of some more of the fluid before starting the next cycle and will also provide time to get an opinion from the cardiologist. I have to say that I'm not looking forward to the next cycle, the fluid retention has become more extreme with each treatment and was particularly problematic this last cycle.

 

On to more pleasant topics, we just got back today from a week in Norfolk. One of the aims of our trip was to see and photograph barn owls. We had some very good sightings of these ghostly looking birds but unfortunately we didn't have any opportunities to photograph them. We did manage to capture a tawny owl on video though, we put our trail camera out in the garden of the cottage we stayed in and this is what it filmed:

 

 

Not the best video but we were amazed to discover a tawny owl visiting the cottage garden.