It’s been a while …
Back in October, Ali and I experienced a first – public speaking as a married couple – sharing our Meso Journey at the Meso UK annual conference. It was the first time that I had properly looked back at what we have been through over the last 2 years. Telling the story in 10mins, you realise what a journey it has been, with some major lows, but also some excellent highs – I have outlived the first timeline I was given! …There weren’t many people with a dry eye (including us) but the response & comments after were very overwhelming – thank you to those whom were there!
In December, I was due to see my Surgeon (Mr Waller) for a follow up. Prior to the appointment he put my last scans through his MDT (Multi-Disciplinary Team) meeting to get views on the lymph nodes that are growing slowly. Result were not what we were hoping for. I had an email advising that there is a STABLE lymph gland (stable is good), however this one is in the abdomen! We are focusing on the word stable, however it is worrying because it’s in a different part of the body. There are 2 types of Meso, and now it’s potentially in the abdomen I could have both types!
It’s like the Meso saying to us “you have got back to a ‘new normal’, so I am making a re-appearance to bring you back down to earth!”.
As Mr Waller focuses on surgery he referred me to Dr Jeremy Steele who also speciailes in Meso and experienced with peritoneal Meso (Abdomen). We had a meeting with him just before Christmas in London, and he advised that as I’m not having any symptoms he would wait for the outcome of my next CT scan, and potentially have a PET scan (PET scan shows intensity of the cancer)! It was a very useful meeting as we learned more about options going forward if required and the cost of Immunotherapy – if we have that option and need to fund it ourselves – £6k a dose!
No time is great but this was a bombshell just before Christmas. Yet after the shock again, we decided it was time to try & forget about Meso and to concentrate on enjoying time with Josh & Erin, family & friends. We spent Christmas Day in 3 cities! Morning at home, Liverpool for Christmas dinner with Staley clan, and then late night travel to Sutton Coldfield to spend 2 nights with Alison’s family. Great time had by all! We then spent a week at home celebrating New Year with friends, catching up with people we had not seen for a while, a bit of work for me and some rest!
After a wonderful festive time, it was back to scan anxiety time! It’s awful and doesn’t get any better the more you have! I had my CTscan on 5th Jan and was advised due to Meso potentially being in the abdomen, my oncologist wanted to take my scan results through his MDT meeting. Therefore, I wouldn’t know the results till 1st Feb. This is great to be well looked after but would have been a long wait…..
The great news is that my Oncologist has kindly phoned me (unexpectantly) to advise that results are positive and it’s All Stable! This is amazing news and the best I will get for now! We still go back early February, and need to find out more with regards to the abdomen, however as long as everything is stable we realise how very lucky I currently am. I unfortunately continue to hear of many other Meso warriors where the disease is spreading or those whom unfortunately have passed away, some of whom I have now met and shared experiences with.
My focus now is to continue to enjoy life with family and friends, working and trying to get more time to get back out on the Bike again – getting ready for a new challenge!
Life is a continual rollercoaster for sure and we are very grateful for the time we have. Wishing you all a healthy, happy and fun New Year.
Dave & Ali xx