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Tuesday 8th September 2009

Today was the day – after being up half the night I decided to call my Dad, Michael's brother Steven to let them know that we had arrived safely – the time at this point was 6am (American time).  Michael was still in bed – how lucky was he.

Breakfast was totally awesome – omelettes all round with fresh orange and coffee.  We discovered that it would be easier to take the tube to the half way station and change lines. 

If you have never been on a tube, well, you haven't lived.  People from all walks of life are there.  The all either read, listen to their ipods, play games on their phones or (as most of them did) fall asleep.  Watching people trying to stay awake is quite funny.  Heavy eyes, head wobble and then when the head goes, that's what wakes them up the jolt of their head falling.

Bingham circle was our destination – this area of Boston is where the Medical Village is situation.  Its very clean.  We tried to count all the buildings that were associated with medical reasons – and yes, every single one was.  Some buildings were for students training, some were research labs and others wards – part of the hospital.  The whole place was solely for medical reasons.  We sat for a while and watched Boston – Bingham Circle live.  There was no hustle and bustle – everyone just calmly waltzed about the place with no real purpose – all using their phones though.

Eventually it was time for us to walk to the Dana Farber Clinic.  This was a huge 10 storey building – well the main one we need to be in was.

Bingham Circle, buildings in the background all research labs and part of the hospital of the Brigham women's & children's hospital, Boston, MA

Bride / Walk through connecting 2 Dana Farber buildings together

We arrived at the 9^th floor and were greeted by a really nice American lady – only too happy to help.  The difference here to the freeman was that you were made to feel like a person and not just a number of the NHS.  They had free tea, coffee and snacks – now that is something that the NHS don't provide whilst your waiting to see the doctor.   

History has it that when the new buildings were being built – which was across the road from the children's ward, the children painted their names onto the windows so that the buildings could wave and read their names.  The builders across the road then began etching their names onto the gurders of the new building.  After reading this story on You Tube, we were so amazed and overwhelmed when we actually seen the names on the windows of the children's ward from the waiting area we were in.  The story touched us both the first time we read it, but to actually see the names all brightly painted onto the windows  well, it brought us both to a stop I can tell you.

Eventually, after 45 mins late, the doctors, called us through.  He was real American mind.  Very nice man.  Michael and Dr Butensky went through Michael's history, clarifying all details.  When all the details etc. were taken and confirmed, with me butting in (most of the time as usual), the doctor gave Michael a once over, looking at his scars from his previous operation last year and asking him to say aaahhhhh – which from my point of view was totally unnecessary – but hay, I'm not a doctor but – well .......

A young lady by the name of Tarsha from the research team was called in – she didn't look old enough!

She sat and explained that Michael would be entitled to Phase 1 & 2 of the Trial programme.  These trials come in different stages for these reasons:-

Phase 1 –  the drugs have only been tested on animals and have proven that differences are made to the cancer;

Phase 2 – the above, plus more than 6 human have also taken the drugs and an improvement to the development of the cancer is positive, this I believe is known as NED (no evidence is detected i.e. - no growth of the cancer has progressed)  – yeah, maybe I should have been a doctor after all – lol!

Tarsha explained that these drugs are free to all research patients, however, the after care is where the cost comes into the equation.  Over in the UK, we do take the NHS services for granted.  A CT scan would need to be taken to check Michael's internals to make sure that the trial drugs were reacting – this would cost $25,000 (£17,000), we sat with our mouths open – so all in all – the NHS is a good service compared to our international friends.  Every time he needs a blood test – it would come at a cost between $200 plus – oh bearing in mind, I haggled with them and we got 20% off this actual consultation – in total Tarsha estimated that it could cost around £80,000 for all the after care that Michael would need, this is over a 3 month period. 

So here is the break down.  The drugs are free but the after care, CT scans, blood tests all come at a very high price – which, is pretty shocking really when you think that they are getting their research from Michael and you would like to think that a life should not cost anything for this privilege that Michael could give them.

Due to the different drugs that the trial programme offers (after my own research), some of these drugs, if they did not work, would also not allow Michael to go back to the chemo he is on now.  This is because certain drugs cannot be mixed.  You mix Gin & Tonic, jam & bread don't you, well, what if you mixed gin with butter – well, it would not be the right mixture, therefore, if you drank it (which you just soooo wouldn't), it would have a detrimental effect to your internals.  If Michael mixed any of the drugs it could lead to serious problems with his heart, bone marrow and many many problems. 

Radiotherapy was not offered as we had thought they might offer – again, because its due to mixing drugs. All in all, we walked out of there more confused that before we went in.  Well, that is not exactly true.

Royal Marsden in London do a lot of research also, which Dana Farber work along side.  My idea in thinking is that if this is the case, why cant Michael receive some sort of treatment there (less hassle travelling), research can be achieved accordingly and no after care fees.  However, along come the confusion then of the primary care trust (pct), these are the section of the NHS who determine the money pot.

So now, we have to wait to see what Michael's chemo consultant has got planned for the next 3 weeks of chemo left.  Everyone has a plan don't they?  Then hopefully we will know which way is which and what is what – at the end of the day, all these people have the obligation to prolong his life – its his also his human right too to be given that – and by gum, if they don't, well, you know where I am coming from.

For the rest of that afternoon we sat and eat in a little quaint bar called the Mission Hill.  Again, sat at the bar, we discussed what the possible options were – we were both puzzled, confused – in fact probably more so now.  By 4pm, we were tired (especially me – my own fault getting up at 2am).  We took the tube back to Somerville station.

When we arrived back at the hotel we laid on the bed and just watched a film – oh it was heaven to relax, no phones going off – both of us didn't really say much, just the odd grunt every now and again.

That evening after showering and changing we took a walk down the road to a little bar called “Tavern at the end of the World”, it felt like it – lol.  It was Irish and the locals tried to get us to do the quiz or “trivia” as they called it – no way – they were all American questions, every now and again though I would shout out the wrong answer (which is normal by the way), Michael laughed and told me to go sit in the toilet as I was embarrassing him – who cares, they didn't know me lol.

We eventually retired back to the hotel which was all of 2 blocks away but when your absolutely shattered it feels like the end of the world.  Being in bed at 9.00pm whilst away is not normal I know, but that huge bed was calling and we fell into it and straight to sleep – zzzzzzzzzzzzzzz.