Day Trip to London

Monday was a big day. We had a day trip to London where we had three very different rendezvous.

We took the underground line into central London playing catch up on the use of things like ‘Oyster’ cards to simplify and reduce the cost of travel. We keep running into things which everyone has been using for years but are essentially new for us. Our experience so far is that people are very helpful to fill us in when we tell them we’ve been away for 14 years.

Our first meeting was with a firm specializing in UK/US hybrids like ourselves who need to work through and manage the risks/potential pitfalls/opportunities of their dual obligations. There are plenty of pitfalls for the unwary and we feel we need the support of firm who specializes in such matters. The morning meeting was positive and both Helen and I agreed to take the next small steps to feel our way in.

We had two to three spare hours between this meeting and the one with Professor Linch scheduled for 3pm. We had a brief lunch over which we discussed our views on how the morning went before taking a long and winding walk to Euston. By this I mean we played inner London Ingress. This took us through the legal heart of London – the Temple area and the law courts. We walked pathways and gardens we never knew existed and even saw what we were sure was a Dan Brown tour still running near the Temple Church.

Even more importantly we diverted off the straight line far enough to reach Chinatown where Helen bought some hard to find ingredients for her renowned chili ‘boost’ and I snagged a trio of steamed buns which hit the spot.

We arrived at University College Hospital with plenty of time to spare which we ended up needing as it took us a while to find the right place to go. We knew we had to go to the top floor but the lifts (elevators) listed the top floor as ‘The Gardens’ and the floor below as hematology. Turned out the private hospital was cunningly unlisted and the floor we went to was the not so proactive NHS layer. By the time we had been sent around a few reception desks and even another building we finally found the right place. They were completely fine with the delay.

After filling in a registration form we were soon in the room with Professor Linch and his assistant to begin the second ‘period’ of responding to my lymphoma, ie. monitoring and assessment. We talked through the history of my disease, my residual symptoms from the treatment and he gave me an examination. All appeared well and as normal as can be expected.

He has decided that due to the masking effects of the radiotherapy, it is better to wait until June for the next MRI. Based on what we’ve learned, particularly with the experience of the last MRI, we support this decision. Between now and then, any response will have to be based on symptoms reappearing. We were assured we have more or less instant access to Prof Linch at any time which was very reassuring. He also said that were we to need to fall back to the NHS, things would more or less run the same way but contact would be more likely with his team rather than with him directly and not as flexible. He also confirmed our understanding that the first two years post CR are the highest risk of relapse with the five year milestone representing the time when one can really feel in the clear. He did caution, though, that nothing can ever be 100%. But we knew that.

He felt that during the next two months, the biopsies taken in Australia can be bought to the UK (I thought they had been) and that examining those and the 5/6 month post CR MRI he’ll be in a position to at least shoot from the hip in terms of prognosis. He confirmed that while CNS lymphoma is merely rare, having the angiocentric T-Cell variety puts us in the realm of there being little data of similar cases to build a more formal prognosis.

So the result of yesterday’s first contact is that there was no cause for immediate alarm and a need to wait for more information. The confirmation that we have anytime and more or less immediate access to the top man was very reassuring.

While we had hoped to be a little more informed after this first visit, we both felt what we did learn was bang on what expected of this first contact.

Our third rendezvous was with Sam’s Godfather, Dick, who has been an acquaintance / family friend since my teenage years. We last met up with him early last year when we were in the UK and shared a very pleasant Xmas Day with him, his wife and three children in NZ at the end of 2010. He showed how his business was architecturally evolving (involving climbing out of a window and standing on the roof for the view of London) followed by a trip to a nearby pub for drinks and a meal.

After that it was a two hour plus trip back home. We were quite exhausted after the day’s efforts but very content. Sleep overcame us rapidly.