Take the Blue Lift to the Fifth Floor and ask for Alana!

[Sailor]

That was the instruction I received on a Monday night about 7.45 pm in a telephone call from a female with an interesting accent. It could be something out of a Le Carre novel or it could be the instructions to a Sailor for any sort of nefarious activity that your mind may conjure. In this case it was the instructions for my first appointment to be on a clinical trial. To sign all the paperwork, to have my tests to ensure my eligibility, to cross my fingers and hope that I get the drug and not the placebo. (Unlike most cancer clinical trials this one is placebo controlled as there is no alternative treatment!) All done - bloods, ECG, urine, pain charts, fatigue charts, etc, etc. Signed my life away on various forms, so now I wait to ensure my eligibility. I'll keep you all posted. Sailor PS - Alana is very nice and has the most beautiful voice. A tourist remains an outsider throughout his visit; but a sailor is part of the local scene from the moment he arrives. Anne Davison 



[BJS]

Good luck Sailor - hope you make the trial.

[harker]

It was a normal day...

[SILLY]

I hope you get in and get the real thing.

[Richard1959]

Hi Sailor Re: " Alana has a nice voice " etc I had a phone conversation with 'Rosie' earlier today who is going to visit my Dad & siblings and discuss palliative care with him next week. I'll be back in Melbourne by then, so I'll miss out on the first-hand discussion. I'd have to say Rosie had a really nice voice as well, and on that fact alone I'm pretty confident my Dad (& siblings) will be in very good hands. It makes such a difference to hear warmth and interest over the phone. In my day job back in Melbourne I work in a young people's mental health service that has a clinical and research program; and when young people are being recruited for participation in a clinical research trial a warm and conciliatory voice in the Research Assistant is so important. Good luck with what's ahead. Richard

[Sailor]

Hi Everyone Well ten days after I was meant to start the trial I am still not on it and am asking some BIG questions about it. The night before I was meant to turn up at 9 am my long suffering and stressed out spouse got a 'phone call to say that I was not eligible as I did not have metastatic cancer, so don't keep the appointment. The problem was that I have a piece of paper, the report from a PET scan that shows that I have cancer deposits in distant lymph nodes. So scan in the report, send it off attached to an email and ring them up the next morning. No it was not the lovely voiced Alana, I don't know what has happened to her. Memo to all cancer patients - when you are first diagnosed get a large folder, insist on a copy of every pathology and radiology report and file them, along with anything else that might vaguely be useful sometime in the future. You are likely to have the only comprehensive medical history - it is surprising what goes missing. Back to the main story. Person I am talking with, indicates that she will send it off to the some regulatory person and will try to make another appointment later that day or the next day. My oncologist calls, he is an investigator on the trial and he says that I am eligible and he has made an executive decision that I am on it. 9 o'clock that evening, the very stressed out spouse gets a call from this person, I'm out at a meeting, to state that my latest path results indicate that I am not eligible and the regulatory person has said that lymph node involvement is not metastatic cancer. Back to the big blue folder and haul out a copy of the relevant path results that indicate that I am eligible, scan in and send off attached to an email! Ring the next morning and somehow that path result had got lost from my history!!!. As for the supposedly non-metastatic cancer - I decide to call in a few favours, contact a friend who is an expert in this area and ask their advice. Lymph node involvement is metastatic cancer - Stage 4 under TNM scheme - whatever that is. Besides the published criteria for inclusion on the trial do not mention metastatic cancer. I clearly meet the published criteria. Unfortunately the Principal Investigator is off overseas and isn't back until the end of this week. So I have to wait until they get back to find out what is going on. High stress, particularly for the spouse and the latest path result indicates things have got worse in the intervening time. So I have not taken the Blue Lift to the third floor to ask for Alana again - I hope I do soon as she has such a lovely voice. Cheers Sailor And when men lose confidence and trust in those who lead, order disintegrates into chaos and purposeful ships into uncontrollable derelicts. Wall Street Journal Editorial 1952

[exhausted]

Hmmmm what colour were the other lifts?