Patient Day London - On Your Bike!

Steve’s shoulder is making good progress and we heard last week that it wasn’t Necrosis and was indeed a side effect from the treatment. Last week I was totally wiped out both with exhaustion and a terrible cold!


Today I went to London to the first ever Kidney Cancer Patient Day. Steve and I were both meant to go but unfortunately Steve has caught my cold!! And is full of it!!

So I left him in the care of his parents and went up to London to hear from the experts the latest in Kidney Cancer.

It was a strange day and I felt quite emotional throughout it. It was run by the James Whale Kidney Charity, which was started 5 years ago by James Whale the radio presenter from LBC as he discovered that he had Kidney Cancer and had to have his kidney removed. He found at the time that their was no where really to go for advice and as it is a rare cancer he didn’t know anyone who had been through it. James was fortunate enought that the cancer was identified early and had not spread outside of his kidney. He had his kidney removed and then went on to set up the charity to raise awareness of the cancer and to lobby for funds for research and to promote the cancer to GP's and Nurses so that they can identify as early as possible the cancer in patients.

Tom Powles was there along with 2 other cancer consultants who presented in the morning and in the afternoon a panel was formed so that people could ask questions. I realised today how lucky we are to have found Tom and given how rare this cancer is, to have one of the leading experts as Steve’s consultant is so reassuring. So many people were talking to me about their experiences and how their consultants didn’t know alot about Kidney Cancer and people were queuing to talk to Tom in the breaks. Tom came up to me in the first break to say hello and asked how Steve was and remembered straight away about his shoulder and told me to call him if we were concerned about anything.

To think we could have been under someone in Guildford who may never have treated anyone with Kidney Cancer before and to instead have direct access to one of the top consultants in the country.

Their were a lot of discussions about the NHS funding issues and how people can not get access to drugs as their local NHS trust will not pay for it. It maybe a position that Steve and I could be in but that depends on how Steve reacts to the HD IL2 treatment and if it is successful, then we dont need to but if it is not then we will need to get funding from our local PCT (Primary Care Trust) so the work of the charity to raise awareness is crucial. So ....... with this in mind! Ive agreed to do some fund raising!

An event called Arch to Arc!

Which in a nutshell is a cycle ride from Marble Arch to the Arc de Triomphe in Paris, it is over 4 days and is approximately 50 miles a day. This will take place next June. The charity are looking for 20 people to do this and for each person to raise £1000 each. Im told its not a race and people will have support in getting ready for the challenge! Hmmm I do really want to do something but as I dont even own a bike Im not convinced this is the one for me! But hey that could be all part of the challenge! And of course if anyone else wants to do it, then they are still looking for people! and I would welcome the company!

We are in the waiting part of Steves treatment and we should soon have a date for his CT scan. We are expecting it to be during the week of 14th December, which would mean we would get the result just before Christmas. As before we are trying to not overly focus on the date but it is already seeming tougher this time, so until I get a date of the scan I wont be posting on the site but instead will be focusing on getting Steve over his cold and me back to work. Oh and probably getting a bike and starting some training! But rest assured if I do sign up to do it! You will all hear about it, with the obligatory asks for donations!