My brain was fried….

Deep fat fried with re-used oil and bits floating around in it !!

We were at the Radisson Blu in Stanstead for the annual AMMF conference. The hotel had a sauna and steam room so that was my first stop before the evening started!!! Any opportunity to sit in a steam room and I’m there !!!!

I picked up my lanyard and my label! Everyone had a label. There were oncologists, nurses, scientists, surgeons, patients, caregivers, genetic people, loads, I can’t remember all!! My eyes were rolling around everywhere trying to spot all the other patients that I had previously met online ! I have been to many meetings and conferences like this from my work. I’ve been Sal Cheema – Presenter so this was all a bit hard to digest.

The conference was very good. Very informative. I really love meeting people and chatting away!! The first night I spotted an oncologist at reception and purposely went and casually plonked myself down opposite and shy, I was not !! I befriended this oncologist enough that we sat together both evenings for dinner and throughout the presentations. So all my questions were answered and I now have his number and email in my phone !! Well that was what this conference was all about really!!

I spoke to 3 surgeons, 2 oncologists, a specialist nurse a molecular scientist and 2 other pharma guys who were really interested in my story, the oxygen tank and my work in clinical trials !! Actually, I was dressed in business casual and looked like one of them instead of a patient! The first morning, me heading down in the lift….. someone asked me which area or hospital I had come from and looked a bit shell shocked when I said, I had come as a patient.

I made no bones about telling as many people as possible to take a look around at the patients and the age ranges…. this is NOT a cancer of the older population.

I could talk for hours about the whole experience. It was fascinating and informative. It was hard and very taxing on the brain. With it being so relevant to my life, it was just so damn weird! We came away just frazzled and mentally exhausted and could barely even talk when we got back….. was all just too much!

It was really very interesting. It is the area both of us studied but in a very unfortunate situation…. but two minds at it, we got as much out of it as we possibly could. Then we did this……..

And someone said, “Can you all look up at the camera”. Thats when it all became proper head bang for me.

BI…DM remember we did this in Germany !!!

I just took a few deep breaths and carried on.

Some stuff I took away…..

  • For a cancer to be classified as rare, it occurs in 6 out of 100,000 cases. The latest figures show this cancer is no longer rare.
  • I always knew how important ‘coding’ was in my job but actually how the incorrect coding can affect the statistics is a big issue, especially in these cancers where you are dealing with smaller numbers. Coding and miss diagnosis has caused big problems in categorising this particular cancer which in turn makes the figures inaccurate
  • In my opinion, outcomes and statistics are very skewed in a grim way for this disease. Predominantly a cancer affecting over 70’s. I think not. The outcome for a 70yr old versus the outcome for a 40 yr old cannot be measured in the same way. Treatment is very different and general health, fitness, outlook etc is very different.
  • Due to the nature of this cancer, it can go undiagnosed for a number of years. Between us we had one diagnosed at 2 months, me at 18 months and one at 3 years. A very complex disease with many factors affecting its measure.

There was soooo much more, its all now rattling around in my head. I need to step back a little and detox my brain!!

It has been a very heavy week due to a few things and I ended up having my first nightmare last night. I won’t go into the details of it but my eyes are proper pickled today.

Onwards and upwards. Looking forward to a bit of sunshine over the next few days! I have made some new friends this week. It is sooo valuable to share experiences. Everyone trying to stay afloat in same boat with no paddles. All doing so with smiles on the outside facing fears every day on the inside.

A few hugs were shared, mobile numbers swapped and all went off on our merry way….. I’ll leave you with this and just say, we will be working together very soon!!!

4 thoughts on “My brain was fried….

  1. You truly are an inspiration to us all! Thank you again for sharing all your experiences and what a fab day. Sending love and well wishes always x

    Liked by 1 person

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