6 Months

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

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Happy New Year

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

Spanner in the Works

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

£12,474.38 – WOW

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.

ITV Granada News…

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:

http://www.itv.com/news/granada/update/2017-07-24/campaign-to-remove-asbestos-from-schools-and-workplaces/

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.
(http://www.virginmoneygiving.com/DavidStaley)

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.

 

 

2 Weeks to go

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,

Dave x

http://m.virginmoneygiving.com/DavidStaley

 

One lung, One life, One hundred miles

66 days to go…. if you are able to donate we would really appreciate it. I am hoping to get some local or national publicity (watch this space)! If anyone can help promote in anyway please let me know.

I never thought this would be possible, and to be in the position to attempt it, is amazing.

I’m fundraising for British Lung Foundation and Mesothelioma UK Charitable Trust.

Please help me make a difference by making a donation to my Virgin Money Giving page.

To find out more about what I’m doing and why, please visit http://www.virginmoneygiving.com/DavidStaley

where you can also sponsor me online.

Don’t forget to tick the box to reclaim Gift Aid on your donation if you’re a UK tax payer. Virgin Money Giving will pass this on in full to charity, making your donation go even further.

Thanks for all your support
Dave & Ali

xxx

http://bit.ly/2qhfK3G

First Cycling Sportive

“One lung, One life, 100 miles”

Well not quite 100, but today I cycled 54miles, 4450ft in 4hrs 38! It was my first sportif “cycle for Amy”, which included a hilly ride up brickworks & the cat & fiddle! Part of the training plan for Ride 100! Thanks to Stephen Colley (Kath Colley) for his support to get me round and Alison Staley & kids for their support & encouragement. Many times during the pain today, I thought how fortunate I am to be in the position to complete this challenge and that I have gone through much worse pain! Just over a year ago, I struggled to walk down the drive after chemo and 18 months ago I needed the help of a Zimmer frame in hospital. Very Proud moment today!

“Start by doing what’s necessary; then do what’s possible; and suddenly you are doing the impossible”. Francis of Assisi

I will be sharing my fundraising page this week for the Bike100 to spread awareness, and inspire others.

Never give up on your hopes and dreams!

 

18 Months on!

18 months on from diagnosis, and according to average statistics for mesothelioma, unfortunately less than 40% make it past this point. However each and everyone of us Meso Warriors are different, and I have never believed this statistic would be me, I wouldn’t let it. You only have to look at the inspirational Lou Williams who sadly passed away this week after 14years of battling this awful disease, yet raising so much awareness.

I had my CT scan last week, and today was results day! It has been a very anxious/stressful wait and although we are getting used to this ‘new normal’ it never gets easier when you pull up outside the hospital! However, the wait at the hospital was helped by seeing two other Meso Warriors and their partners whom we got to know @ chemo, both looking extremely well. Thank you for helping to keep us calm and distracted and we wish you all a great well deserved holiday.

Well, it was good news – the scan results show the 1 lymph node has decreased from 11mm to 9mm. There are currently no other signs of the cancer, they say the Lymph node is not a significant concern at present, and may be a result from my major surgery still. We know we will never get the all clear but words cannot describe how much this means to us. It is a huge huge relief. I will still go back in 3 months but this time for for an X-ray and follow up.

So over the last few months of having completed the pulmonary rehab course (highly recommend for all Meso Warriors, no matter what stage/age you are), I have started cycling. More will be revealed, but I am planning to raise money by completing the London Ride 100 in July! 100 miles starting at the Olympic Stadium, across the Surrey hills, climbing a total over 4000ft (leith Hill & boxhill), and finishing along the mall! I was so inspired last year supporting my brother in law Simon & Alison’s best mate Emma complete this and back then I was so determined this was something I had to do, so this is my goal. Supporting me will be my long time great mate Steve & Simon. Watch this space!

I couldn’t have done any of this without the support of my wonderful wife. Over the last 18 months she has been an absolute rock. Not only supporting me and the kids but working full time, and in April this year been rewarded with a promotion to HR Director EMEA. To do this as well as everything else going on, is a massive achievement and one that makes me so very proud, and how lucky I am that she said ” I do” almost 13 years ago.

That’s the soppy stuff over with. Apologies in advance as you will be hearing lots more from me to help raise funds now over the next few months. If anyone has any ideas, or wants to help with fundraising /publicity please do let me know.

Thanks again for all your continued support to Ali & I & for helping with our kids too whom are doing so well and make us proud. My diagnosis is still very difficult at many times for us and it really makes us appreciate every day. Thank you to you all, it is very much appreciated.

Dave & Ali xx

Quick Update

Thank you so much for your very kind wishes and messages of support for today – a different kind of Valentine’s day (though typically we would normally be at work so at least we saw each other today)!!

Apologies for the brief update, it’s been a long day but we got more clarity from this appointment which was helpful! Our surgeon reviewed the CT scan and he said my remaining lung looked good and so too do the lymph nodes. He couldn’t see the nodule that the radiologist had reported, but unfortunately he also didn’t have that report to analyse it further. He recommended a PET scan to review it further and we are back with our regular Oncologist locally Thursday, so we will request this.

Our surgeon reiterated to me that I am on borrowed time, I should literally wake up and say “s*** I’m alive” and literally live each day like it’s my last as the mesothelioma will return, it’s just a question of when!

Its very very hard to hear this, but it’s what we’ve been adjusting too now since the diagnosis 14 months ago so we just continue to take each day as it comes, be very grateful for it and take great strength from yourselves as our family and friends and from other survivor stories too.

Thank you so very much for your continued support, it honestly means so much to us both.
Dave & Ali x