Monday, 28 November 2011

An awful lot of Myeloma

Hi again to the world. This last few days has seen Lorna and I immersed in a whole load of Myeloma.
Firstly we spent several days putting together the CD's we are doing of the "Crossroads" single Lesley Roley recorded for us. The art work and the Technical stuff was done by the intelligent half of the relationship,(Lorna, for those who don't know us) and I did the E:drive in and outs with the CD's and pressed the copy button. Then it was off on Friday night to the Hilton Hotel at Birmingham NEC for the meet and greet session prior to the full Myeloma info day starting at 9.30 on Saturday morning.
A funny thing happened on the way to the meet and greet session. I had booked a hotel close to the Hilton, as it was FAR to expensive to stay there. Only "close" was a £15 taxi ride, because my knowledge of B'ham is a bit sketchy after only living there for 50 years! Things have moved a lot in the last 6 years, well I'm sticking to that as my excuse. We met Ellen and Rebecca from Myeloma Uk, who kindly bought us a beer and a wine, and we also met Kevin and Ann, fellow Myeloma patient and wife and we all had a lovely chat about 8 mile runs and things....... not mine or Lorna's I hasten to add, as we are only play walkers.
Saturday morning we replaced the £15 taxi with a £3.60 bus ride, the wisdom of which will be discussed later. This was followed by a 1000 metre sprint..... well fast walk, across the NEC to the hotel. An interesting point that we encountered at this juncture, was that the "Good Food Show" and the "Motorcycle Show live" (not sure what a "dead" bike looks like but still) were both on in tandem with our Myeloma event, so the crowds were a tad on the crowded side as we walked through.
We managed to arrive for the Info Day on time and we sat at the front next to a couple of the celebrities..... well Dr.Mark Cook from UHB Queen Elizabeth Hospital and Dr. Supratik Basu, my consultant from New Cross Wolverhampton. It was a very informative morning, with Dr. Cook talking about current therapies and how survival rates are hopefully on a steady upwards trend.
Just before the morning recess I was invited to take the mike, (no not a dig at the celebrities, I meant hold a microphone) and tell the gathering about the lovely CD's they could have if they made a suggested donation of £5 to Myeloma research. AND WHAT A SPEECH IT WAS!!! Well it must have been because  10 people made a donation and walked away with a wonderful CD ;-), but that does mean we still got 10

After lunch they had arranged breakout sessions with the various celebs, and we felt compelled to follow Dr. Basu to his "side effects and complications" question and answer session as I had got to attend a Monday @3.20 Appointment in his clinic, and wanted his best One of the really pleasing aspects was that he was happy to recommend that his patients (;-) ) go swimming regularly for exercise.... something I really enjoy......WHOOPEE!
When the day was over, we fought back through the crowds at the NEC rail station and stood on the train all the way home, more on the wisdom of that too, later.

Today was the "Later" I was on about. I attended my 3.20pm appointment with Dr. Basu at his clinic, and started the conversation with "Hello stranger". At the Info day Dr. Basu had informed us that he always starts his patients appointments with "Your paraprotiens are...." (he lied) so as usual I asked him! Despite going in a week earlier to give bloods, they were still not available, so we had to go with October's which were a reading of less than 2 again..... Whoopee, no I mean WHOOPEE really, cause it means I'm still holding. The rest of my results were in this time though, and not all brilliant news.  My HB is at 12.6(still below what it should be at a minimum of 13.5) my platelets are back down to 80 from 125 and I'm apparently immuno-suppressed, and banned from public areas such as buses, trains and swimming pools, hence the "later" earlier.   :-(
The hip pain I have been suffering lately means I have to be scanned by the MRI machine thing as soon as it can be arranged.
On the PLUS side my creatinine is down from 180 to 145, that's my Kidney function improving, meaning all the Bacardi I swill through em is WORKING!!!!!!!!

1 comment:

  1. Excuse me - I turn my back on the pair of you for ten seconds and what happens? You become international rock-star promoters?!
    And how public is a public place? Doesn't a myeloma convention count as dangerous territory? Behave yourselves and stay well! ;)