Category Archives: Uncategorized

Stable & very very relieved!

You would think that after 6.5years of regular scans we would get used to the wait, but every time the scananxiety seems to get more stressful especially as we’re back to 3 monthly & the cancer is inside you! Your mind still runs away with what ifs & will our life suddenly change to rounds of chemo etc again! 

Scan was 7th June, results were due 30th June but we found out that day results were delayed with staff shortages.  However the great Manchester Meso team have called & results are positive – I am stable! No further current growth!!

Beyond relieved & very grateful. Back in October for next scan & now back to making memories! 

Best wishes to all. 

Dave & Ali.

Stable results

Hi All

It’s been a while since our last update, but in brief my Meso is STABLE!

I had a scan 6 weeks ago to get to the bottom of a blood clot on my splenic vein. After a 5 week delay on results, it was confirmed the blood clot is no longer there and nothing to worry about. 

I then had my 3 month Meso scan 2 weeks ago, and results were reported within a week which is the quickest of all time! They confirmed the nodule near my chest wall has grown slightly from 6-10mm, but as so small in Meso terms they class it as ‘Stable’. The lump on my scar tissue is still present, but as it doesn’t show on my CT scan and I feel well, they are not concerned.  Therefore, back in 3months for another CT scan! 

I feel fortunate I didn’t suffer too much with COVID & my 1 lung, I am now back at work, and everything going well. Holidays and activities booked to keep on making those memories with family and friends and appreciating what we have.

Lots of love

Dave & Ali xxx

Meso Update

Hope everyone is managing to stay safe & well and all have had good festive celebrations?

Quick update as many of you have kindly asked: After my last update in October when we unfortunately found out my Meso had returned, we had meetings with various specialists to determine the best approach. It was agreed by all that it was best to wait for the next scan & see how the cancer progresses. Options would be immunotherapy or chemotherapy, not any further surgery.

It’s not easy to deal with ‘watch & wait’, it is very tough when you know you have cancer inside you but it has spurred me on to get back exercising again with Pilates, indoor cycling – zwift etc (& stops Ali nagging me to do so!!! ). I am also attending weekly counselling which was tough at start as thought provoking but I’ve stuck with it & it’s starting to help. Some days are better than others. Like the saying now with COVID, its been a sharp reminder that we need to learn to live with my Meso too!

I had my scan on 12th Dec and results day was last Thursday 13th Jan. Great news in that the cancer is stable & following further discussion with my Oncologist yesterday they have advised no treatment still due its size and back in 3 months for another scan. With Meso you don’t get many attempts at treatment and so we need to save it for the right time!!

One unknown thou is the scan picked up a blood clot in the Splenic Vein which needs further investigation. So we’re awaiting again, but as I’m not suffering any side effects I’m trying to stay positive. Also, I’ve now ‘ultra boosted’ my immune system in that I’ve just had COVID! Not something we wanted and that has bought its own anxiety, but have been very fortunate, in that as far as were aware it hasn’t got to my one lung so that’s good!

Thanks again for all your love & support 

Dave & Ali
Xx

Almost 6 years & it’s back!

Unfortunately, the Meso has returned!

In 2 weeks I will be hitting my 6 year diagnosis anniversary, so If you told me then that I would still be here in 6 years time right before my 46th birthday, I would have jumped at the chance! And we are still extremely grateful to have had these last 6 years which is absolutely everything for our kids growing up.


Mid September I noticed a lump which was causing me some pain. The Meso team are great and very rapidly I was seen by my Oncologist. A biopsy via ultrasound and CT scan were booked and so the anxiety waiting game began! A follow up telephone appointment was booked for yesterday, however a call on Tuesday asking me to attend the hospital face to face made our anxiety rapidly rise!!

The biospy has confirmed Meso on my scar tissue, and the CT scan shows a further nodule/tumour in some fatty tissue near my chest wall. We take the positive in that they are only small, and at this stage they are advising no immediate treatment. They will observe the growth and any symptoms over the next 3 months and then have further CT scan!

Yesterday, we felt very relived in that we thought it would be straight into treatment and may have spread to my right lung etc. Today, I am now struggling to get my head around the wait and see part, and would rather be doing something productive to treat it! Something we are going to investigate and think on over the next week!

For fellow Meso patients …. if anyone has had experience of wait & see, or have had treatment for small signs of tumours etc, we’d be very interested in your thoughts thanks…

Sorry for so many of you reading this on FB but we made the extremely tough decision to try and keep it within us this last month or so and not tell the kids/risk them over hearing conversations when we had no facts to tell them. This has been extremely hard as we are very open people and feel better when talking but they had just returned to school & Erin settling in at high school. We did tell the kids last night, they’re aware its meso, which is a cancer, but we’ve said its that small, no treatment is required currently and if they/anyone google’s meso – Dad’s is re-writing the rules on this & has already lived past his prognosis!!

For local friends and those with friends of our kids, we encourage you to be open talking about this with us now and with our kids your kids. It is very hard, there will be tears I’m sure but we will be open and work this through as a family together and with your fabulous support as family and friends.


Will keep you posted. Best wishes

Dave & Ali

5 year scan results

It’s been 5years 4months since my diagnosis of Mesothelioma & following my annual CT scan on 23rd January, I received the excellent news today that the scan shows “no evidence of recurrence of cancer”! Huge huge relief and time to celebrate….

Never would we have dreamt of getting to this stage and we remain so incredibly grateful to all the fabulous consultants, specialists, nurses whom have all contributed to me being alive today, together with all the wonderful support from you all as family and friends.

You may remember back in November, I asked if you could all kindly donate to help us celebrate 5years and my lockdown birthday. Thank you so very much as you helped raise over £1600 towards Meso UK! It’s all very much appreciated especially in such difficult times for charities and much needed medical research.

Thanks for your continued support
Dave & Ali xx

5 years ago, yet still alive!

5 years ago tonight (aged 39) I was given the awful diagnosis of 12-18 months to live with a disease called mesothelioma. I was very unlucky to get this diagnosis as I have never knowingly worked with/been exposed to asbestos. However,  I feel incredibly luckily and proud today as I am only one of 5% of people diagnosed who survive 5 years or more! 

None of this would have been achieved without:
*Mr Waller and the Medical team at Leicester Glenfield who removed my left lung etc
*My oncologist (Dr Paul Taylor) and Meso UK nurses(Lorraine / Maireed) at Wythenshaw hospital Manchester who have been immensely helpful throughout Chemo and ongoing support ever since…
*Wonderful support of Family & Friends, who have been there for both myself, Ali  & the kids throughout
* My wonderful wife, Ali who has been there with me every step of the way and words can’t describe how lucky and grateful I am to have her by my side.


There has been plenty of ups and downs over the last 5 years, and the last 8 months have especially been tough with the impact of COVID. 

Mentally, it’s been the toughest since diagnosis.  I have felt very anxious, tired, feeling low, lack of motivation, and a “grumpy old man” at times. Having to shield, the extra worry of being highly vulnerable to COVID, explaining to the kids about mesothelioma, reasons why they can’t do certain things with COVID their friends can etc, brings Meso to the forefront. I have struggled & am currently seeing a counsellor to help me through. I am starting to feel better and getting back to my normal self. I just have to keep reminding myself that if you had told me 5 years ago I would be here, alive in the middle of a pandemic & on the eve of my daughters 11th birthday, I would have snapped your hands off!

Our plan was to celebrate 5 years with a big party & fundraising event, but for obvious reasons that’s sadly not possible.  Hopefully one day soon we will be able to.

However in the meantime, it’s my birthday in a few weeks (19th Nov) and we can’t go to the pub etc to celebrate my 5 years. Therefore, I wondered if instead of buying me a present or a pint(or 2 😂), if you could kindly donate the equivalent to Mesothelioma UK? During the pandemic their income has dropped dramatically and they need all the help we can give as cancer hasn’t stopped with COVID!  Money raised goes towards funding nurses to support current and new patients, along with raising awareness and finding that much needed cure for Meso. 

Thanks again for all your support to all of us, it means so much 
Dave & Ali xxx

https://www.justgiving.com/fundraising/david-staley4

No Sign of Disease

On the 4th Jan I went for my CT scan, and yesterday, 23rd Jan was results day! We have had many scans/waiting for results over the last 6 years from when symptoms started, and it doesn’t get any easier.  In fact this time ‘scan anxiety’ seemed a lot harder.  Up until the weekend, I had sort of managed to forget about it, but the last week has been really tough – even with a new Puppy joining us on News Year Day!
The anxiety/stress builds and the mood changes.  Even Erin asked me a few days ago if I was okay, as I don’t seem myself.  I have not been able to relax or switch off, I have been more ratty and less patient. I have found it very difficult to focus on anything.  I was trying to think positive, and that if you had told me 4 years ago, I would still be alive and ‘just’ be coming for 6 monthly scans and I would suffer stress/anxiety for a few weeks , I would have absolutely snapped your hand off for that. Yet, however hard you try, it doesn’t stop the mind working overtime and thinking the worst and we’re all different too! Ali had been ‘ok’ in the build up, but (& I know she won’t mind me saying as this is reality!), that after finishing work Wednesday, & putting on a front for the kids until bedtime, the tears streamed down Wednesday night & yesterday!
Therefore, yesterday when my oncologist Dr Taylor told me “There is no Sign of Disease”, we were both speechless and tears of joy and relief flowed! A huge, massive weight lifted off our shoulders. I have also been moved to 12 monthly CT scans which is just incredible. 
Again thanks to all of you for all your ongoing support & to the great medical team. It’s not just scan anxiety time when we have ‘wobbles’, it’s in making decisions for our future, in when we plan our working lives, when I’m suddenly ill, have a cough, had stomach problems earlier in the year & was anxious it had spread to peritoneal mesothelioma etc so thank you to all our family and friends for keeping us going!!!

Best wishes 
Dave & Ali xx

1 LUNG FOUR YEARS ON – LIVING WITH MESOTHELIOMA!

4 years ago today, 6 days after my 40th birthday I had my life changing/saving Operation with the removal of my left lung, chest lining & part of my diaphragm! This was following diagnosis just a month earlier of Pleural Mesothelioma. Without the operation, I believe I wouldn’t be here to tell my story! 

There are so many fellow Mesothelioma patients we have met, that sadly are now no longer with us and we think of them and their families and friends. Mike whom I met on my Chemo being the most recent, and he and his wife always had time for us both at chemo & check ups, and were so positive. It really continues to hit home how fortunate I am, as I can only think of a small handful of people who are living with this disease longer than 4 years.  I genuinely believe that being diagnosed at early stages, being young, and having the operation & chemo has saved my life, and enabled me to exceed the 12-18 months life expectancy. 

There are so many of you to thank, but a special thank you has to go to the Medical team for keeping me alive and taking the extreme high risk to do the Operation in the first instance!!:
Professor Woodcock (First consultant following symptoms) 
Dr Shah (BiospySurgeon)
Mr Waller & his team (Mesothelioma Surgeon @ Glenfield hospital)
Dr Paul Taylor (Meso Oncologist who is still looking after me today!). 
Mesothelioma UK Nurses – Lorraine & Maireed.

There are many more medical people, and the list could go on. You know who you are and thank you! …..

Special thank you to my wife and kids, who have been my rock. I’m so lucky to have Ali by my side, and words cannot describe how I feel about her. Without her who knows where I would be… 

When I look back at what has happened and what we have achieved since diagnosis, it makes me very proud and grateful to everyone who has helped me along the way. I wouldn’t wish the last 4 years on anyone, however I have learnt so much about myself, and how resilient as individuals we can be. The love and support people have shown me has exceeded well above anything I could have dreamed of – huge thank you to all our friends and family. The incredible generosity of meals, childcare, donations for my bike rides, my actual bike ride buddies & the long hours of training for both 100mile rides, positive people/quotes/messages, listening to us etc etc! There are so many of you all to thank & name personally but I know that without all of this support, I wouldn’t be where I am today. Erin has almost doubled in age since diagnosis & Josh is now 12-how amazing and what a privilege it is to see them grow up.  

No matter what life throws at you, until that last breathe, never give up, keep believing and have faith. 

“Start my doing what’s necessary, then do what’s possible, and suddenly you are doing the impossible” 

Lots of love Dave xx

P.S (Updated 26.11)
I know so many of you have already but if you would like to donate to help find a cure to Mesothelioma  please donate to https://localgiving.org/fundraising/staleyerasemeso/
I’ve set my own fundraising page and Funds raised go directly to a new charity set up by Paul Cook  (Fellow Young Meso Patient) and his wife Jill. 
ERASE MESO OBJECTIVES 
1. Fund scientific research into mesothelioma to help find a cure or at least a way of maintaining this disease.
2. Raise awareness of mesothelioma.

Relief

It’s been a week where my Mesothelioma has been very much at the front of Alison’s & my thoughts! 

Last Thursday I was privileged to be invited to share my journey at UKATA AGM (UK Asbestos Training Association), at East Midlands Airport.  There were representatives from across the Asbestos  industry, mostly those that train others to increase awareness of Asbestos and the dangers it can cause.  The feedback was overwhelming and hopefully it will inspire those present to continue the great work they do.  It was fitting this was the day before Annual Action Mesothelioma Day, with many articles/events highlighting awareness of this awful disease and our thoughts go out to all those who are less fortunate than me and have lost their lives. 

Today was my 6 monthly Xray and appointment at Wythenshaw NW Lung Centre. We are hugely relieved to share that the Xray was clear and it gives us another 6month break and back in Jan 2020! 

Waiting for the appointment these last few days, walking into the hospital, sat waiting in the waiting room brings all the sickness feeling flooding back and the what ifs and maybes! I’m unlucky to have the disease (we still get odd looks/comments in the waiting room that we are so young!) but so lucky to be showing no signs of the disease currently!
It was Joshua’s 12th birthday celebrations last weekend (due to exams interfering end of June for him!) & Erin is 10 in October – we’re just so thankful that I’m here to share in their lives still which certainly did not seem at all imaginable after diagnosis. 
Please do still continue to spread awareness yourselves about the danger of asbestos. It’s in 700 UK primary schools still, it’s in hospitals, libraries too and if we can prevent  even just 1 person going through anything like we have, then it’s worth it. 
Tomorow Erins school is raising money for Cancer Research UK. Each child will be running 2k, and raising valuable funds to help find a cure for Cancer. We do appreciate many of you have already kindly donated previously & continue to do so as sadly cancer impacts everyone of us, but If you are able to donate it would be very much appreciated. 
Thanks for all your continued support
Dave & Ali xx

Update 39 Months On

Hi All

Happy New Year!
We had a lovely festive period with family & friends, but the last 3 weeks have been tough on us waiting for results following my first full CT scan in 12months!
It’s always been the toughest part waiting/the unknown! Your mind starts playing games with you and every twinge, cold or change in mood/tiredness you start to think the worst! In fact I have just started an 8 week online Mindfulness course (encouraged by my wonderful wife!), to try and help us through these tougher times!
Well the fantastic news is that the CT-scan has shown no change from 12 months ago, and my oncologist has told me he will see me again in 6months! We are ecstatic! If anyone would have had told me 3 and a bit years ago, following the short prognosis I was given, that I would be on no medication/ treatment, leading a normal (ish life) with 1 lung and I would ‘just’ have to go through the scan anxiety, I would have said – “that would be like winning the lottery”!
Our thoughts go out to all those who are not as fortunate, are more advanced with Meso and dealing with other cancer diagnoses too. Please don’t give up hope, there are plenty of success stories out there and continued medical advances. Stay positive # keep believing.
Thanks again for all your kind messages of support
Lots of love
Dave & Ali xx