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

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£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

Scan Results Feb 2017

Hi All

Thanks for your kind wishes for today. Ive had my CT scan results and they have reported a growth from 5mm (June 16) to 11mm in a nodule that they have found. They advise it’s not big enough to warrant treatment currently but we will now need to have a scan in 3months to see if there is any further growth. When asked if it was cancerous they can’t say either way.

Unfortunately, they couldn’t give us any answers about this growth, because we were unable to see our regular Oncologist (whose on a well deserved holiday) and so now, after feeling so strong and positive recently, we are very anxious.

I asked why the nodule wasn’t mentioned previously and she advised it was probably because it was so small and there nothing to compare it to. They also advised the CT scan was noisy, but couldn’t say why or what impact this would have.

We now await an appointment with Mr Waller in Leicester on the 14th (very Romantic!), and hoping he will be able to tell us more. We were always advised it would come back and we try to stay positive, but it is very difficult at times and we were at least hoping for a 6month CT scan break this time!

We do still hold hope though that if this nodule is the start of it again, it is caught early enough, I’m being monitored, and hopefully with all the trials going on & immunotherapy, a cure will be found soon.

We will update once we know more. No doubt tomorrow we will feel better. There are many ups and downs in life and we have had more Ups. That’s what I am holding onto and making sure we have more ups going forward!

Lots of love
Dave & Ali
Sent from my iPhone

Happy New Year

Apologies as it’s been over 3 months since my last blog and many of you have been kindly asking for an update. Well firstly, I do hope you have all had a fantastic Christmas and wish you all a happy & healthy 2017!

So going back to work in September was tougher than I thought it would be. After being off for 8 days short of 1 year, it was a shock to the system. Everyone at work has made me feel so welcome and Barclays have been so supportive. I returned on a rehab programme building up my hours and by mid November I was up to full time hours with time split between the office and home working. After focussing on increasing the hours, it was then time to focus on the concentration levels and increasing the workload. Early symptoms are tiredness and headaches but I’m getting there.

It was also much more mentally challenging than I had expected. It’s hard to adapt and accept that I was not the person as I was before and up to normal speed. I was probably more hard on myself than I needed to be and came to realise that in many ways it was like starting a new job and to pace myself.

Outside of work I have been doing my best to keep up with balancing work/ family life and exercise! Exercise was going well up until Christmas(!!), but I have started again this week with Pilates! Although Ali had her hip op & has been recovering (we’ve decided she is a better carer & I’m a better patient!!!) we have had a good few months celebrating family birthdays as well as my own and doing normal family activities which previously we had often taken for granted (footy with the kids, parks etc). Finally, I had my belated 40th boys weekend away in the lakes involving beers, walking, food and more beers in stunning clear winter weather! We were also very fortunate to have a great family trip to Goodison Park and a meet & greet with the everton players! Josh, Erin & myself loved it, Erin managed not to tell them Ali supported Man U & Ali went along politely!!!! Thank you to a fab friend for kindly arranging this – we first heard about this possibility driving down to Leicester ahead of my operation & it cheered me up no end.

The last few months have brought up a lot of anniversary’s … this time a year ago etc…. which is hard and emotional at times for Ali and I but it also makes us feel very proud of how far we have come. You as our family & friends keep us all positive which is very much appreciated.

January is now scan anxiety month with results early Feb – which we are already thinking about! I have decided to go and see a Macmillan key worker to see what help they can give with regards to scan anxiety, and coping mechanisms with living with a terminal illness. We have been through some low moments of adapting back to some ‘normality’ and I want to seek support to see if there are ways of coping better with it.

I feel 2017 is going to be a great year though. I’m hoping to do some fundraising/awareness campaign and making lots of precious memories with family and friends. We also hope 2017 is a break through year for those suffering from mesothelioma and indeed all cancers.

Thanks for all your continued support.

Dave & Ali xx