Home with some answers and thoughts

Well after 2 days driving "up North" Steve and I are home. Well if your going to do a journey across the UK why not do it when the roads are snowy and icey!!


That said our journey was fairly event free, apart from when we were turned back from one road across the Pennines which was covered in 6 feet of snow!
I know, I know Cambridge, Lincoln and Manchester don't really count as across the UK but we are southern softies after all!!

I have to say how lucky we feel that we have managed to see the top people in the UK and how both of the Professors that we saw gave us a great deal of time and were happy to answer all of our questions.

Yesterday (Monday) we saw Prof Eisen in Cambridge who spent nearly 2 hours with us listening patiently and asking lots of questions about Steve's cancer.
He felt that with Steve being a young fit man (Steve liked these comments!) that a clinical trial should be a consideration. The problem maybe that as Steve has had blood clots then this maybe a problem to this approach. However the Prof was going to look at this. He strongly thought that we should look ahead and look outside of the UK but use this approach for the future. Sutent an approved drug in the UK should be a consideration and this ties into what Tom spoke to us about. Prof Eisen had concerns over Steves pain in his side and felt that Steve should get a MRI scan on his back to rule out any possible cancer in his spine. And definitely before he goes skiing!!! Yes skiing! More of that another time!

Steve was amazing and asked lots of questions and I got the famous note book out (which travels everywhere with us!) and took copious notes. I interjected at times and gave the Hewitt stare to Steve when he was being somewhat economical with the truth as far as his pain is concerned.

We left Cambridge and went to Lincoln and stayed with Windy and Jeanie who cooked us a lovely dinner and let us stay at Windys flat. It was such a nice thing to spend time with friends and laugh about other things and not focus on the day we had or the day we were going to have.

We left in the morning from Lincoln and headed to Manchester. In Manchester at the Christie hospital which is a specialist hospital for cancer I felt incredibly sad. I looked around a waiting room of people, who were all there as they or their partners had cancer I realised how many people have cancer. Possibly a silly thing to say but when confronted with a room of over 100 people all waiting to see doctors it really came to me how many people this disease effects. I also couldn't help but notice how young Steve was compared to everyone else. Selfish thoughts of "why" Steve kept coming into my mind. I struggled to see anyone within 10 years of Steve in the waiting room. Steve being Steve was his usual self being upbeat and putting on a fake northern / Liverpool accent "Calm Down, Calm Down!" was what he kept repeating. I did point out that we were in Manchester and not Liverpool but think Steve's repertoire was limited to Liverpool! Where would I be without Steve's amazing attitude to all of this. He enables me to be positive but also means we can be ourselves together.

Prof Hawkins felt that whilst IL2 had been somewhat effective it was not conclusive enough for Steve to continue, though he is going to contact Tom to see if their maybe an outside reason why IL2 didn't work so well on the 2nd time. He felt we shouldn't completely disregard immunotherapy for the future but for now go onto Sutent. And then in the future when Sutent stops working look at a 3rd line treatment with IL2 in it. He told us about a hospital in Washington the National Cancer Institute (NCI) which runs clinical trials which would welcome participants from outside of the US. He told us about a patient of his, who is a doctor who has looked at this as a future next step and felt given Steve's age that we should be looking at all options inside and outside of the UK.

Whilst neither doctors told us necessarily nothing that we didn't know, to be honest we weren't expecting any different but to have the opportunity to spend time listening and asking questions to leading experts has made us both feel confident that we are on the best path possible. We feel lucky to have such a knowledgeable person as Tom on our side and that we are in the best hands possible. Both doctors and Tom have said that a positive approach and being under the right specialist makes all the difference!

So if you have made it to the end of this post and I'm sorry its such a long one, then the bottom line is that we are going to see Tom on Thursday and I will update further after we have seen Tom.