Waiting for the results of my latest scan

The last three weeks have been very enjoyable. Katie and I spent ten days up in Scotland and we had a great time. The weather was surprisingly cooperative and we saw some great wildlife and some wonderful scenery. The side effects from my last treatment were milder than they have been on any of the previous twelve cycles of Trabectedin so I've been feeling pretty good.

 

Yesterday I had a CT scan and this afternoon I have an appointment with my oncologist. It is highly unlikely that the radiologist's report on the scan will be available so soon however the oncologist will be able to take a look at the images and see if he can determine if the cancer is stable or if the tumours have started growing again. Past experience has taught us that unless the scan shows a very clear change in the tumours we can't take the oncologist's interpretation as anything other than an indication - we've had a previous instance when the radiology report came to a different conclusion from the one the oncologist had reached.

 

As usual the scan results are absolutely crucial. If the cancer is stable my intention is to go ahead with three more cycles of Trabectedin. If the cancer is growing we'll have discuss next steps with the oncologist. 

 

Waiting to get the results of a scan always makes for a tense and stressful few days. Sitting in the waiting room ahead of seeing the doctor is always the most difficult time in my view, I find in near impossible to think about other things whilst waiting to be called in. The clinic is often running up to an hour late so that also adds to the tension.  

 

I'll post a further update on the situation tomorrow or over the weekend, in the meantime here are a couple of images from Scotland. The first is a dipper and the second is a rainbow in a glen.

 

 

 

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: