We went to see Tom today, not yesterday as originally planned. It was a fairly short meeting and Tom got straight to the point.
Basically Tom told us that the scans showed the cancer in Steves lungs and kidney bed had grown, by about 30%. On top of this there is now a cancer tumour in his liver.
I'm still not over the shock of it, as much as I thought it wasn't going to be good. As Steve has been really in pain and have seen Steves quality of life change a lot I didn't expect this. Steve is doing okayish but as you can imagine has shook us but in Steves true to form fashion has already started to think of the next steps.
Due to our utter ridiculous NHS system and the terrible decisions by NICE (deciding body of NHS money!) Steves only option is to go private. Luckily we have Bupa and Steve has this option but I cant help but think where would we be, if we didnt have it. But we do have Bupa so need to use my energy thinking positive about this.
Tom was very clear and determined of the next stage, Afinitor is the drug that Tom feels should be Steves next step but as Ive said above we cant get this on the NHS so as Tom only works on the NHS he cant work with us directly anymore, that said he had already been on the phone with 2 fellow Kidney Cancer professionals who do practise both on the NHS and privately.
We are going to meet both of these guys next week one called James Larkin, who we have seen previously at the Royal Marsden and one called Simon Chowdhury who practises from Guys Hospital. Tom carried on to tell us, that he wants to be involved and wants Steve to come and see him once a month, he then spoke to me and said I know this is tough but please always call me and I will help you where ever and however I can. I trust Tom I believe in him, he is a dedicated professional who has a very difficult job but one he does excellently.
Steve wants to explore the option of seeing someone locally as well, as he gets so tired going up to London and wants to make sure his time is spent in the best ways and not travelling all of the time. I can understand that but want the best for him! And the best in my opinion is to see one of the doctors above. But and this is a big BUT its not me but Steve who is going through this and I will always support him. I am here to make sure he gets the best but also the best inline with what Steve wants.
We have decided to meet the two people that Tom has helped us with and also the local doctor in Guildford. From there we can decide who to be under. Its important that we find someone who we believe in. Someone who makes us feel that we are important to them and who we trust. It going to be a hard act to follow though, as I trust Tom and I know that Tom believes in Steve and wants the best for him and goes out of his way to make us feel that.
So for now, we need to get our heads around this and to gather ourselves and get the next step sorted out. Oh and between all of this Ive got to cycle to Paris. This time next week I will be half way through my cycle ride to Paris. Please, please, please sponsor me, now more than ever I need to ensure that Kidney Cancer gets the funds and awarness it need to ensure we do something so we can stop other people having to go through this journey. My link is on the right hand side of this blog.
I will update following on from our meetings with the doctors.
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