At the Meso Patient & Carer day it was inspiring to hear other patients stories (Tim Stokes & Liam Bradley); along with the experts speaking on the tremendous amount of current work going on, the trials, the research etc which gives all of us Meso warriors hope for the future.
At both conferences the National Meso audit results (2014-16) were highlighted and the key stats which stood out for me are:
7192 diagnosed during audit period
84% of pleural Meso occurs in Males
Average patient age is 75
104 patients are below the age of 54
Only 40% had chemo
4% have radical surgery
Out of 7192 patients I am only one of two people who had full lung removal!
38% patients survive 1 year
7% patients survive 3 years
This week another milestone was achieved for us as I passed the 3 year mark! Looking at the above stats it still shows how incredible lucky we are!
Therefore it added to the emotion today that we were able to share our 3 year journey at the NLCFN forum at the International Centre in Telford. The aim was to inform those present of our journey and hopefully to continue to inspire attendees to continue the great work everyone is doing to help us as Meso patients and carers. Our presentation was based around the following quote (thanks Caroline Cartwright ) that has stuck with me since the start of diagnosis and will do going forward :
Just a quick update to share fantastic news; I had an X-ray today (first one in 6months) and a follow up appointment. The Oncologist advises X-ray is clear, and he doesn’t want to see me again for another 6 months! Such a huge relief! Scan anxiety is still horrendous!
We had a good conversation with our oncologist who took time out to discuss how we were both feeling and coping. I advised days go by now when I do forget I have it, but then it unfortunately hits home when fellow Meso warriors are either passing away or going through more treatment. We also discussed current trials and how compared to 10 years ago there are a lot more trials and the potentials of immunotherapy. Encouraging signs but still a lot of research to go! However there is hope, I believe one day it will be cured and hopefully I will be around to see that!
Currently I am one of the more fortunate ones nearly 3 years on from diagnosis! We’ve had a lovely summer celebrating my dads 70th, my In-laws Golden Wedding Anniversary, we’ve just had a great family holiday, I get to see Joshua finish primary school and shortly start high school and Erin turn 9 soon! None of these milestones seemed possible at the end of October 2015!
“Start by doing what’s necessary; then do what’s possible; and suddenly you are doing the impossible” Francis of Assisi
Lots of love, continued thanks to family & friends and our best wishes to fellow Meso warriors and those impacted by cancer.
Dave & Ali x
Today is Mesothelioma Awareness day and I attended a moving ceremony in Albert square, with about 150 people who have either lost loved ones or currently suffering with this awful disease. A lady told us her story of loosing her husband (aged 60) within 12 months of diagnosis and 3 MPs spoke about the need for more research, removing it safely from all buildings & schools, and raising awareness of the dangers of asbestos.
Therefore, I thought this is a good opportunity to give an update and spread awareness;
Currently alls very well, I am symptom free and one of the few lucky ones. Life is good (just struggling a bit with 1 lung & the heat but us British always love to say something on the weather!), kids are keeping us busy and we are enjoying spending time with family and friends. My next Scan is in August, and now we are at six monthly scans, it helps so much to avoid the scan anxiety. Some days I even forget I have it and I so wish that could be the same for all Meso Warriors.
Last week, I was asked to do a 10 minute video for the British Lung Foundation, who were holding the first conference of a Mesothelioma Research Network, bringing together researchers and healthcare professionals from across the country. As well as telling them my journey I was asked:
“What message do you have for scientists and healthcare professionals who are researching mesothelioma and treating people who have this condition?”I have attached this and please share far & wide for awareness (It was a last minute request as unfortunately a Meso warrior was not well enough to attend, I did this in 1 take quickly in my lunch break so apologies in advance)!
Unfortunately not everyone is aware of the dangers of asbestos and think “it won’t happen to me”! Very sadly death from mesothelioma is still on the increase. In the UK, it is still present in 85% of schools, no asbestos is safe asbestos and more people die from Mesothelioma in the UK than on the UK roads!
Please, please do all you can to help find a cure, and do everything possible to prevent you, family, friends & anyone else, being exposed to asbestos. It is not worth the risk!
At this time we think of those who are no longer with us, their family and friends and current Meso patients worldwide. Dave & Alison Staley xx
Hi all, it’s quite fitting on World Cancer Day, that I share some fabulous news. For the first time in 4 years (Pre-diagnosis with biopsies etc not knowing it was Meso) I have gone from 3-month checkups or less to 6months!!!! My Oncologist re-confirmed my recent results and advised the lymph gland now 12mm (previously 19mm)and no concerns on the abdomen! It now means we can relax and avoid scan anxiety for awhile! He advised 1 CT scan has the equivalent radiation of 50 X-rays, and since I have had many CT scans, we need to be careful! In addition my scans over the last 12 months have thrown up some red-herrings that have caused more scan anxiety than required. Thus, next visit is August, and that’s only an X-ray!
As I write this though we know we are fortunate, there are many others who unfortunately are undergoing treatment, or sadly haven’t got such positive news, some of whom we have become good friends with. We send our very best wishes, this Mesothelioma, as-well as all cancers certainly are a rollercoaster!
We are extremely grateful to all the medical experts and carers whom continue to work so hard for all cancers. Here’s to more research, treatment & a cure!!!
Dave & Ali
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
It’s been a great six months, feeling the fittest & healthiest in years, family trip of a lifetime to Disney & the US, lots of family & friends time, completing 2 amazing 100 Bike rides, and raising a huge £12,763.13 towards the BLF & Meso UK aiming to find a cure.
Well sometimes life likes to throw a spanner in the works, especially when it comes to life with cancer …
Today’s results could have been better, we were hoping for 3 or 6 month scan break, but a lymph node has grown by 3mm to 19mm and is likely the Meso is slowly growing back! However, there was a slight growth & very slight decline earlier this year so for now they will observe!!
Also there are some concerns around my left kidney, but they need to do further examinations to fully understand what this is. It is not normally a common link with Meso-so fingers crossed. We are holding onto the fact that I am feeling well and currently have no symptoms or pain whatsoever.
We have overcome challenges before and we will get through this but just feeling a bit set back again which we have to get use to with cancer! Will keep you updated!
Again if you can kindly be discreet around the kids it would be much appreciated, as at this stage with not having clarity, we won’t be saying anything more to them.
For fellow Meso warriors, Ali & I will be presenting at the conference next Friday, so hopefully see you there!
Lots of love Dave & Ali x
I just wanted to say a massive thank you to everyone for your very generous donations towards Mesothelioma UK & BLF. We have raised an incredible £12,474.38 which is absolutely amazing. I never dreamt we could raise this amount of money or awareness so thank you.
The ride itself was amazing. Seeing family & friends around the route, along with all the crowds definitely helped spur us on. The last 20 miles were very tough, with legs & other bodily parts aching…… but the support of the crowds, knowing family & friends were at the finish line, along with thoughts of “I have been through much worse”, inspired me to finish. There was no way I was giving up, even if I had to be carried over the line!
To finish riding down the mall and seeing Ali & the kids was a very proud & emotional moment!
I now have the cycling bug, and have signed up to complete 100 miles around Birmingham on Sept 23rd. This is to ensure I keep the fitness going and hopefully to keep raising the awareness (and money if you haven’t donated, and are able to).
On the 13th October, Ali & I will be guest speakers at the National Mesothelioma UK Patient & career day. It will be a first for us! A double act sharing our journey as patient and carer with the aim of helping & inspiring others.
Thanks for all your continued support it means so much to us all.
Lots of love
Dave, Ali Josh & Erin.
Training has been going really well (except for odd blip of nasty stomach bug these last 2 days) and I’m up for the challenge this Sunday! Ali & I did a tough emotional 30 minute interview with ITV to raise awareness to remove asbestos from buildings as no asbestos is safe! It is still in up to 85% of our UK schools and it’s a myth that untouched asbestos is safe! I’m not sure when it is on this week @ 6pm but here it is:
A massive thank you for all donations so far, with an incredible £6k raised. If you haven’t yet donated and would like to please click on the following link.
Last week I had an X-ray and all was good. Back in August/Sept for a CT scan which will be the true test.
Thanks for all your amazing support.
Today was the last “big training ride” before the Ride100 in 2 weeks. It’s now rest and a few short rides to keep the legs ticking over.
There are so many of you to thank on this journey, but just want to mention a few:
My wonderful wife(& kids) for being very supportive and becoming a cyclist widow -Todays 5hr ride took me to a grand total of 104hrs & 40min of training – an average of 7hrs per week with a total distance of 1341 miles travelled!
Jane at cyclebuddie.co.uk for all the weekly training sessions and expert advice to get me up the hills- currently 200ft short of hitting the magic 50,000ft of total climbing!
Simon and Emma for completing the 100 miles last year and inspiring me to do it this year (though maybe I should not thank you until its over!!!)- Simon & Steve (& their wives and families too) for the constant support and encouragement and whom will get me over the finish line in 2 weeks!!
Every single one of you for your kind comments, asking how the training is going, & for helping me raise a grand total of £4375 so far! I appreciate there are so many worthy causes that need vital funds, so it really is very much appreciated.
I can’t thank you enough,