Radioactive!

A massive thank you from the bottom of our hearts for all the love and support you have all given us, the messsges, offers of help etc. It means so much to the four of us and gives us huge strength to face the challenges ahead. 

Aim of the blog is to keep everyone updated – thanks for your continued messages asking what’s happening -along with hopefully helping others going through similar situations. This time I have also started taking photos!

The speed & care I have received from NHS has been excellent so far. 

First up was Lung Function test at Wythenshaw Hospital on Tuesday 21st Feb. Various breathing exercise to see how strong the right lung is, to see if it will be able to cope with the planned treatment.

I then met with my Meso UK nurse and had a good talk through on what to expect etc. 

Wednesday I was up early for 8am PET scan at Wigan Royal Infirmary. It’s starts with “radioactive Sugar” put through your body via cannulae. Then rest for an hour whilst this is sent round the body.

After the 1hr it was time for PET scan which lasted about 20mins. I just laid there closed my eyes, and let the machine do its magic. Overall it was very straightforward and weirdly quite relaxing.

Apparently I was radioactive for 8hrs afterwards, and needed to stay away from kids – any excuse!! Sorry Ali! 😀

Those who remember my earlier blogs, there was always a poo story….. so apparently I needed to ensure I flush twice for 24 hrs afterwards as when you empty it’s radioactive! 😂😂

Next steps we now await these further results with appointment on 1st March with my Oncologist.  I have also  been referred to Manchester Christie hospital to see a specialist on the SABR radiotherapy procedure and await appointment. 

We will continue to update through the blog. Thanks again for all your love and support. 

Lots of love 

Dave & Ali xx

Left ‘lung space’ behaving, right lung not!!!

A huge shock to us but unfortunately, my February CT scan shows that on my right lung, I have a different lung cancer now – non smokers lung cancer called adenocarcinoma! Hopefully because I’ve been back on 3 monthly scans they have caught it early as it’s small!!!

For people with 2 lungs, biopsies & surgery would be performed, but they cannot risk that with me just having the right lung left! Therefore, current plan is to have a PET scan, lung function tests & if all ok to proceed with intense radiotherapy – SABR @ The Christie’s.

In addition, also showing they think are 2 small Meso nodules on my right lung, but as they are incredibly small we may just have to sit & wait with them a bit longer to see how they behave & if it’s definitely Meso! (PET scan may tell us more!).

It’s a big shock to us all & not really typical of Meso patients to get this second type of cancer but then I haven’t been typical from the start!! So deep breaths! We remain incredibly grateful to our Meso oncologist, Meso nurses, the NHS and we take each day as it comes!

Some of you may also be aware that Alison has had a rough 6months struggling with severe headaches, dizziness, neck & ear pain, muscle weakness, fatigue, coughing etc & not being able to get out bed for quite a lot of days missing out on so much – totally unlike her!

Literally as we got the call from my oncologist for me, we were waiting to see Ali’s neurologist!! After chest CT, 3 brain MRIs, spinal MRI she has been diagnosed with Chiari Malformation triggered by long covid, a straight spine & bulging discs contributing to everything. Hopefully, now with the diagnosis, medication, physio etc we can gradually get her back to her normal active self!

It breaks your heart to have to tell your own kids that you have cancer & now a ‘new’ one too, but at 13&15, we are talking very openly about it all. For those close to us, living near us, kids who are friends with our kids etc please do feel comfortable talking about it with us all, with your kids too, explaining it. It’s not nice, it’s not easy, we may get emotional but all emotions serve a purpose!

We will keep you posted with progress! And I know we may sound repetitive, but we really do thank our family, our friends for all your love, support, friendship, prayers, keeping us going, lifts etc for kids, it’s means so much to the four of us.

Best wishes
Dave & Ali xx

7 Years & Stable

We feel very fortunate that I have now hit 7years since my Meso diagnosis! Wow putting in writing makes it feel even more real! Something we genuinely could only dream about & hope for 7 years ago, having been given 12/18months to live.

Back on 3 monthly scans since its return last September, but this has been the longest wait for results since diagnosis. We really feel for all the NHS staff & all others awaiting appointments, results etc. 6.5 weeks since CT-Scan but I received a call from my Meso nurse last night to confirm results are stable. No current growth! Beyond relieved & very grateful.

We can finally relax & look forward to Christmas celebrations. 

Best wishes to you all, thanks for all your support & wishing you all hope and good health this festive time.

Dave & Ali.

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 46^th 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