Well what a time it's been! Since writing last I've been to 3 countries! Firstly I took the big kids to Amsterdam, we went on the ferry from Newcastle and had a day in the beautiful city. We managed a lot in a day, the kids were educated in sex drugs and rock and roll! It was when they started cringeing I stopped the sex education, it may have been a bit much 😂 It was so nice to spend good quality time with them, even if it was rocking back and forth on a Geordie Ferry!
Then me and my friends Jane, Lynne, Pam and Lesley went to Lanzarote! It was just what we all needed, 5 days of sunshine, laughter and cocktails. Just what the doctor actually ordered! I arrived back on the Monday evening, had a quick 6 hour round trip to Leicester on Tuesday for a CT scan then off to Brussels on Wednesday morning! Talk about Judith Chalmers! (Kids ask your mam!). The purpose of going to Brussels was to attend the annual European Asbestos Forum, hosted by the amazing Dr Yvonne Waterman. A collaboration by so many in the asbestos industry as well as those in parliament who have an interest in working towards a cleaner, asbestos free future. I got to travel there with the amazing Liz Darlison (CEO of Meso UK), we put the world to rights and had such fun nursey chat (as you do!).
I was presenting my story at the 2 day conference, as was Heather Von St. James (a fellow Meso patient and campaigner). It was so nice to finally put a face to the name! We certainly flew the flag for our fellow Meso patients/survivors/sufferers/warriors/campaigners.
What do we call ourselves? My name badge said one thing, the programme another and it really got me thinking what should my/our title be? People always ask me what title they should use for me in publications and I'm always unsure. These are the definitions of each; each being somewhat appropriate;
Patient: A person receiving or registered to receive medical treatment
Survivor: A person who continues to live, despite nearly dying
Sufferer: A person who is affected by an illness or ailment
Warrior: A brave or experienced soldier or fighter
If I'm honest I don't like any of them! I prefer just being me, Helen, I don't need a title. You see Mesothelioma doesn't define me, it's a disease I have to live with, but it is a very small part of who I am. If I must use any title it would be campaigner.
Campaigner: A person whose intent is to make change to something in society.
Yes, that's a bit of me :-)
We got home from Brussels and fell right into the festivities. I had a festive crafts day with my ACCP ladies, a secret santa night with my council estate friends, a day out in York with Mark and the smallest children, and family xmas days! one with the Marshalls and one with the Bones. I was trying to hold off having my stomach drained until after Xmas but by the third week in December I couldn't tie my shoelaces or shave my ankles! It may have got to the point you didn't know where my ugg boots started and my legs ended! 😂 I was admitted on 20th December and had 5.2 litres of fluid drained, no wonder I was uncomfortable! That's meant I can enjoy Xmas and New Year in my normal clothes (I have 2 sets now, Big kite clobber and regular clobber!). For our anniversary (Dec 28th) me and Mark even had a few days in the lakes where we went to 3 Michelin Star 'L'Enclume' and stayed at the amazing Brimstone Hotel and Spa. Treatment has continued throughout all this and I have had stable disease on scans so far. I have a CT scan on 9th January so will wait and see what that result is and go from there.......
