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...