Friday, 30 August 2013


This is a very short post to say that I'm now back at home having been discharged earlier than expected from the hospital.
I finished the course of antibiotics this morning and as both my temperature and the blood marker for the infection had returned to normal my consultant decided I could go home late this afternoon. I'm feeling fine.
It's very nice to be out of the hospital and I'm looking forward to the weekend. Thanks to all those who sent Katie and I their best wishes this last week!
The plan now is that I will have my next cycle of chemotherapy next week though we're not sure which day that will be.
There's a lot of building work going on at the hospital so there are plenty of cranes around...

Tuesday, 27 August 2013

Feeling positive

Hi, Katie here again. Paul's temperature has dropped in the last 24 hours and he's had no more shivering episodes (phew). The microbiologists have confirmed that he is on the right antibiotics for the bug they grew from his blood and that he needs to be on these for five days. This means he finishes the drugs on Friday lunchtime. The doctors then want to monitor his temperature for the next 24 hours to check that everything is looking good. So, all going well, we hope Paul will be out of hospital on Saturday afternoon.

Sunday, 25 August 2013

Update on Paul

Hi, Katie here. Paul felt unwell yesterday and as he had a temperature we headed into the hospital to get him checked out. The result is that he has an infection and is now on two types of intravenous antibiotics. He'll be in hospital until the doctors are happy that the infection has gone. Hopefully just a few days. Apart from getting severe shivers now and then (called rigor and quite alarming), which is due to the infection, he is not feeling too bad. Keeping our fingers crossed that this clears up ASAP!

Here's Paul hooked up to his antibiotics!

Wednesday, 21 August 2013

Delayed scan result

I was expecting to get the result of my latest scan at my oncology appointment tomorrow, however the hospital decided to move my appointment to next Thursday even though I'd asked them not to. They made this change as part of scheduling my next chemotherapy appointment so I understand how it happened but it is still frustrating. I've asked that the oncologist give me a call to tell me the results so that I don't have to wait an additional week. It's not ideal as I'd much rather get the news face to face.
Regular readers of my blog will know that I've got a rare genetic mutation that results in a massive increase in the risk of developing certain cancers. People carrying this mutation have Li-Fraumeni Syndrome (LFS). This mutation is almost certainly the primary reason why I have developed LMS at a relatively young age.
The mutation is to a gene, TP53, which is responsible for a critical mechanism inside of cells that causes cells that become damaged to self destruct. Without a functioning TP53 gene damaged cells survive and often go on to become cancerous - at least that is the accepted theory as to why people with this mutation have such a high risk of developing cancer. Very recently however a new theory has been put forward by Pan Pantziarka. Pan's theory offers an explanation as to why people with LFS are at increased risk of some specific cancers (including LMS, the cancer I have) but do not seem to be at increased risk of others. More importantly, and if correct, Pan's theory holds out the hope that there may be ways in which the risk of people with LFS developing cancer can be greatly reduced. Potentially some drugs might be able to significantly reduce the risk level. This would represent a huge step forward for those diagnosed as having LFS.
Pan's theory is currently untested, however he is to be congratulated on having come up with new and potentially highly beneficial ideas relating to this condition. I hope he gets the support needed now for his theory to be investigated further. For those interested in the detail two papers are available, one for the lay reader here and one for those wanting a more in-depth scientific explanation here.  
A few weeks ago Katie and I visited Gigrin Farm in Wales. This is a tremendous place to see and photograph red kites. The farmer feeds the kites every afternoon, sometimes the easy meal attracts well over three hundred of these magnificent and once endangered birds.

Tuesday, 6 August 2013

Sixteenth cycle of Trabectedin underway

Following a week long delay I was able to proceed today with my sixteenth cycle of Trabectedin, this is excellent news.
Last week my neutrophil count was 1.39 (billion neutrophils/litre of blood) whilst this week it was 2.4, it needs to be over 1.5 before it is deemed safe to receive the chemotherapy. According to the Cancer Research UK website, the normal range for neutrophils is between 2 and 7.5 so even today, five weeks after my last treatment, my count was at the bottom of the normal range. This is my twenty-fifth cycle of chemotherapy in the last twenty-eight months so I guess it's to be expected that my bone marrow is a little tired.
When I'm not photographing wildlife I also enjoy photographing gardens. I like to return to the same gardens time and again as the changing seasons, growing plants and different light make every visit unique. Here are a couple of shots I like from this summer, the first from our own garden (a flawless rose grown by Katie) and the second from The Courts Garden in Holt, Wiltshire: