CLLSA new member and novice patient on “watch and wait”, travels to London:
UK CLL Forum Annual Scientific Day Molecular targeting in CLL – from bench to bedside. Tuesday 1st March 2011
"It’s so nice to come home" Frank Sinatra I think? I did it!!! I’m feeling quite pleased with myself, but I didn't realise how much worse my arthritis had become. I can barely move my legs in their hip joints or walk on my ankles today. But what an amazing trip for me: I got to my hotel without hassle, other than the auto ticket machine not squirting all the tickets out on the outward journey, so had to have a fifteen minute chat with the guard on board, after the train had departed , as to why I did not have a ticket!!! No problem he was a human and at the other end at the barrier a very kind West Indian mystic just waved me through. I'd been playing the story out in my head as I approached her, she just gave me this wide smile and wafted her hand away from the barrier, that was it, I was home again (London).
Then straight into a black cab, where I was given the cabby’s lament on the disappointment of Chelsea being one nil down to Manchester United at half time, we arrived at the hotel just as the talk ended. It was a typical West End Victorian town house and because I was penny pinching, it was on the tired end of the scale. Chipped marble entrance foyer, shabby worn carpet and refrigerator sized lift. After hanging up the next day’s clothes to allow the creases caused by jamming them into the computer space of a computer bag to unfold, I decided to take a stroll down memory lane.
As luck would have it "the cheap deal" hotel launched me straight onto Marble Arch, majestic in its night time floodlights. As I headed for the light, collar up and scarf warming my nodes, I was hit full on by the combination of smells and noise riding on a stiff chilly wind. I hadn't found it yet but I could smell the smoke of hookah pipes being smoked in a near by Arabesque bar, mixed with diesel and food waste from the rear of many eateries. I turned left onto Oxford Street, dodging late night shoppers heading for the Tube station, and the evening set, heading out for the night, starting their own adventures. I'd forgotten how unrelenting the city wind can be, so like the shadowy figures settling down for the night in sheltered doorways, I ducked out left into another world. full of lit windows, with chattering groups grazing on Chinese and Italian delicacies, pubs, curiosity shops and yes, that Arabesque bar, with four figures huddled against the wind sucking on their pipes. A sharp right turn and I was at Marylebone Police station and Berkley square, It was there I was halted by the sudden heavy feeling of fatigue, the original idea of a pint in the pub had already been squashed by the Flagyl in my system courtesy of a jaw infection, now it was the fatigue. But it was enough, tomorrow was another day and the real reason I was here.
UK CLL Forum Annual Scientific Day Molecular targeting in CLL – from bench to bedside. Wednesday 2nd March 2011
I was glad to have travelled up the evening before, as I awoke fresh and full of optimism. A peaceful time to leisurely prepare myself and then wash down some toast with a cup of tea. Then back out of the hotel entrance into a bright city morning, backtracking my steps of the night before I was back at the square and after a meander through side streets and mews I was on Portland Place, directly opposite the conference venue. Another majestic sight: the RIBBA building with its sculpted façade, my “Mecca” for the day.
I was early, tables and stands were just being completed by interested parties in the anti room and our table was quiet as members were elsewhere buried in early meetings. So I took the time to grab a coffee and nose around: A good sized conference hall, but small enough to be close to the action. Returning to the CLLSA table I met my first CLL people, (of course I’d spent a little time on line with many, or anomalously shared space in haematology waiting rooms). This was a big moment for me, Ann and Chonette were the first to greet me and whilst they organised themselves for the day I watched the anti room fill, with CLL specialists, scientists and associates. But what struck me straight away was how connected every one was, even the great “gurus” had time to exchange a chat with a mere mortal like me. Which surprised me as it was their professional meeting and I was on their turf. So perhaps they are just people like us.
Greetings and “chit chat” over it was time for the business to start, so I settled down towards the rear of the hall, with my sketch pad in hand assuming that everything would just fly over my head. I had spent a little time on line before on sites from our web page "sources of additional information" http://www.cllsupport.org.uk/sources.htm and read the documents mailed to us when joining the CLLSA, so had prepared. The sketch pad very quickly became a note pad, I was captivated. I was able to grasp the introductory phases of each speaker’s topic, even if much of the new science did put me out of my depth. But what did strike me was how much development is in progress: new directions in testing for and identifying markers and methods that may change how CLL is clinically managed and treated. Of course I understand that the percentage of “in vitro” experiments actually reaching the bedside is low, but actually hearing first hand some of these techniques and concepts, was fascinating. I must mention how encouraging it was to watch these practices being debated, following presentation. The CLL forum has shown me that the coming together of many CLL research and clinical specialists can only improve the likely hood of this work benefiting us patients.
Coffee breaks and lunch was a good time to meet with other CLLSA people and share more chat, while they got on with the task of providing CLLSA support information and recourses to the many different specialists and health professionals. Judging by the amount of literature taken away by doctors and staff, I assumed they use this as a stocking facility as well as an update for their own patients.( let’s hope it gets there)
The afternoon session was a little more hard work for me at times, but was helped by the humour and antics of some of the speakers. Lessons for me to learn first hand were that even methods that reach the bedside and trial phases can fail, fizzle out, or come to a halt,
for many reasons. So it’s back to the bench or on to another cycle. Trials were updated and discussed, which seemed to show a sharing of responsibility within the group of professionals in fulfilling quotas to allow trial phases to complete. The session was completed with a presentation on the development of the UK CLL forums website. Which will allow the professionals, much greater access to the information pooled by the forum. This brought an important day in the many to a close.
A CLL friend sent me this message the other day, I think it’s very relevant for me.
“Hang in there! With enough squeaky wheels the medical community will continue to push for new treatments.”
Nick
CLLSA member and novice patient on “watch and wait”
