Hi All
Following a fantastic family holiday in Mexico, we returned last Tuesday, and same day I had my 3-month CT scan! Talk about being back to reality but at least all the washing, together with work, kids football matches etc etc kept us busy to try to reduce the scan anxiety!
We’ve received excellent news – my mesothelioma cancer is currently stable! No change over the last 6months now. So incredibly happy and hugely relieved.
I have a follow up in May in regards to my radiotherapy last year for the Adenocarcinoma Cancer in my right lung, but this hopefully is more of a routine appointment as scan shows that as stable too!
Next scan is towards end of August.
Thanks again for all your support.
Watch this space for further announcements on the Meso Ball!
Lots of love
Dave & Ali xx
6 Months to go
🗓️ 6 months to go!
🎟️ Tickets on sale from start of May!
💷 Tables of 10 for £650 or individual tickets for £65pp!
🎁 Sponsorship & auction/raffle prizes much appreciated!
🎵🥂🎉 💃🏻looking forward to raising vital funds for Mesothelioma UK with you!
Save the Date
Watch this space for further details.
Rock Solid!
Firstly, thank you very much for all your words of support and advice further to my last blog – much appreciated.
I feel incredibly fortunate as a meso patient to still be alive after 8 years despite typical meso prognosis, yet it is hard with no clear treatment path.
So throughout the end of last year, we sought a second opinion, researched heaps, had very helpful calls with Meso Uk and the fabulous nurses and received lots of supportive and very informative advice from Ali’s work colleagues.
When the time is right, Immunotherapy is my next course of treatment, but we learnt I can’t access the double drug of Immunotherapy via NHS as I am now classed as ‘2nd line treatment’. Thus, we were fortunate to transfer to a private consultant via my works insurance, met pre-Christmas and talked through pros and cons of Immunotherapy with 1 lung too, or ‘watch & wait’. We proceeded by having a scan now last week to see if there was growth and then we would possibly treat.
We were able to have results this week and hugely relieved to say that both the non small cell lung cancer in my right lung and the meso tumours in the space where my left lung was, are stable or as the specialist said “rock solid”!
We’ve been on this journey for just over 8 years and the emotions continue to be a huge rollercoaster. Right now we’re over the moon– this gives us 3 more months of no tests/appointments – we can plan again!!
As always we’re incredibly grateful to the Meso specialists, the Meso nurses, the NHS, the Christie’s and our fantastic friends and family who keep us all sane and put up with us!! We are also so incredibly proud of our kids who cope so well on this rollercoaster with us, together with navigating teenage life! They love rollercoasters, but this is one you would never chose your kids to ride!!
Best wishes to everyone and thank you!
Dave & Alison xxx
Ps – If you havent yet watched, you can see me on Defenders UK raising awareness. I am on at start, middle & end!
Tough Decisions
People ask if we think about my meso everyday, and some days we do manage to just get on with life but the last month has been very tough!
As written about many a time before, scan time is so tough and I had a few weeks prior to my latest scan, where I had some pain & was very fatigued.
Anyway, this time due to my second cancer, I could have my CT at the Christie’s so results turnaround was super quick (1week) which is hugely appreciated.
Results are mixed, for my adenocarcinoma on my right lung, they are now classing this as stable as the radiotherapy worked as hoped and I have next scan in 6months to monitor. Sadly for the meso though, this was reported as having some growth.
Thus, a week later (this last Thursday), we saw my Oncologist at Wythenshaw. We discussed in detail my options and next steps. There is slow growth of the Meso in the space on where my left lung was, and we discussed benefits/options of treatment or watch and wait still. I have 2 nodules (also known as deposits/tumours) that have grown from:
1) 1.2cm to 1.7cm
2) 3.2cm to 3.7cm.
Treatment options are Chemo or 2nd line Immunotherapy (nivolumab).
As my quality of life in general (apart from fatigue) is okay ish, we all agreed to no treatment yet, and to go back in 6months for scan (unless symptoms/fatigue worsen).
The hard (&good!) thing is that I’m still an anomaly!!! 95% of meso patients globally sadly die within 12-18months of being diagnosed, the EPP operation I had 8 years ago is extremely rare & now suspended in the UK so unlike other cancers, there’s no clear treatment path for people of my ‘young age’!! (48 next week!!)
So now coming away from the appointment, discussing things further, we are re-considering that initial decision – although I’d rather not, should I have treatment now and stop putting off the inevitable? Would this stop the 2 nodules spreading elsewhere?
Thus, using this as an update as we really appreciate all the generous support we have, and also reaching out to fellow mesothelioma patients.
– have any of you had the operation, and then had ‘slow growth’ & watched and waited? – have any of you had more than one operation for mesothelioma?
– are there any of you who are ‘watch & wait’ with slow growth rather than having treatment.
I appreciate this journey is very different for everyone but any advice, thoughts is very welcome.
Many thanks
Dave & Ali xx
Action Mesothelioma Day
Today allows us to reflect and remember those MesoWarriors who have unfortunately lost their lives to this preventable, incurable disease. Our hearts go out to their loved ones, families and friends. We have known many whom are sadly no longer with us from the various Meso meetings & conferences.
This October, I will reach 8 years since diagnosis! With less than 5% globally of people only surviving 5years or more, it reiterates how incredibly fortunate I am, that Im still alive today, with many thanks to risky life saving surgery by Mr Waller at Glenfield Leicester Hospital, the amazing Meso UK nurses, and my fantastic oncologist Dr Paul Taylor at Wythenshaw hospital, together with the amazing love, support & prayers of family & friends.
Currently my Meso is stable having spread to the right lung this last year (originally in my left). I am suffering with a daily cough, breathlessness, fatigue, and general lack of energy. However, we hope this is just the after affects of my recent radiotherapy & not the meso! Next scan is in October to see whether there is any meso development & also to see what results the radiotherapy has had on my new cancer – non smokers lung cancer – Adenocarcinoma .
If you have not already done so yet, please do sign the petition, so we can get to 100,000 signatures. Asbestos is not safe, it’s everywhere & mesothelioma is entirely preventable!
Based on recommendations made last year by the Work and Pensions Committee, we’re asking the government for a central register so that we know where all the asbestos is and in what condition it is. We’re also asking them to set a timeframe for the safe removal of Asbestos, prioritising settings such as schools and hospitals. Please sign our petition:
https://petition.parliament.uk/petitions/635817
Many thanks Dave & Alison xx
Initial Meso results are good
ln brief it’s good news! My Meso full CT Scan report has not been written up yet, but 2 consultants have reviewed it and can’t see any growth in the 2 mesothelioma nodules on the right lung, so huge relief! We do need to wait about 4weeks for the report to be written up but hoping it remains this way. The plan if all is well, is to have a scan in 6months time which would be big relief to go back to that timescale again.
For the adenocarcinoma, which I’ve had the 5 sessions of radiotherapy (SABR) @ the Christie, we have a follow up on 9th June. I will then need a further scan (likely to be end of July) to see if it’s removed the tumour.
I’ve managed ok with the radiotherapy. Nowhere near as bad as the chemo or surgery & just fatigue & a cough as side effects.
So we are initially relieved. It’s been a horrible wait again & really got to us these last few days. We were both very anxious. Scan anxiety never gets easier, it doesn’t matter how many times you have these appointments, the anxiety builds up thinking what’s next.
In addition, we have Josh who was literally sitting his Business GCSE whilst we were at the hospital awaiting these results. What if we then had to go home & tell the kids awful news and he had his DofE Silver presentation that night & then his Maths GCSE the next morning to focus on?! Everything goes through your mind like this & much more & you just want to protect them from it all. On the flip side, after my initial Meso diagnosis we never knew if I’d be alive whilst he sits his GCSEs so whilst we have the anxiety, we also have a lot to extremely grateful for.
Both Josh & Erin are being very resilient & their humour & antics keep us going. Josh has now finished week 1 of GCSEs & so long as he is fed with treats he seems to be coping well!!!!
Thanks so much for all your help during treatment – lifts, sitting with me at treatment, food gifts, continual supportive messages & all your love & prayers it’s forever much appreciated.
Dave & Ali xx
Radiotherapy Update
I had my first of 5 radiotherapy sessions on Thursday to try and remove the adenocarcinoma. (There is still some debate amongst the specialists, whether it’s Meso or Adeno, but we may never know as I can’t have a biopsy!). It’s felt a very long wait from first diagnosis so good to now just get on with it.
Staff at The Christie were amazing. They allowed Erin & Ali in prior to treatment, so Erin could see the machine, & understand what would happen – Josh stayed home ‘GCSE revising’!!
We were 30mins early & they were 45mins late so besides the wait & build up, it was very quick. Set up & treatment took 20mins & I didn’t feel a thing!
I’ve felt abit tired following it, but think that’s all the build up etc. No other side effects yet!
I have 4 more sessions, 3 this week (Mon, Wed & Friday), and last one (hopefully) on Monday 24th April.
I have follow up scans in May to check up on Meso & to see if the radiotherapy has worked.
My Colonoscopy has showed no polyps & after a call this week nothing else sinister from the biopsy (great news) but just inflammation, so have meds to hopefully resolve. Likely to need another colonoscopy -yuk-to ensure medication has worked its magic!
Thank you for your continued, texts, messages, calls, cards, offers for help, it’s so greatly appreciated. We feel very fortunate for all the love & support everyone is giving us.
Thanks so much
Dave & Ali x
The Christie Manchester
Wythenshaw North West Lung Centre, Glenfield (Leicester) Hospital, Wigan NHS and now The Christie Manchester – I’m getting around a bit with my cancers!!!
We spent this morning at The Christie to learn about my next steps. Its felt a long 4 weeks since diagnosis of the adenocarcinoma, and Ali & I have struggled these past few days in particular in anticipation for this next appointment and what the plan is! It doesn’t get any easier no matter how many appointments we have!
However, as soon as we were at The Christie, the lovely staff looked after us very well. It became apparent my Meso Oncologist, from Wythenshaw was also onsite so he came to see us, which was reassuring and it appears they’re all talking about me because I’m so unique!!
However, being unique also means there’s no proven pathway for treatment of the meso & suspected adenocarcinoma and lots to discuss! Due to having just 1 lung, they can’t do the biopsy or surgery which would be preferable, so I will commence SABR Radiotherapy in early April with the aim to ‘cure’ the anedocarcinoma! ‘Cure’ is a huge word to us as on this cancer journey of 7 plus years as we’ve never heard that word! The radiotherapy will most likely be over 2 weeks every other day lasting about 30 minutes. Highly efficient! Main side effect being tiredness and maybe some rib pain (due to its location)!
The mesothelioma nodules will then be reviewed after this treatment with more decisions at that stage.
As with our other NHS teams, the adenocarcinoma team were very thorough, gave us so much time and its all very reassuring knowing we have some of the best in the field liaising and looking after us.
Just as an aside – to keep up with the ‘poo’ stories – we didn’t mention it last time as there’s so much going on, but I’m back at The Christie Tuesday having a colonoscopy and polypectomy due to polyps visible in my bowel following the PET scan – but hopefully all will be okay from that!!
Will post more when treatment starts after some more tests/checks etc – I get ‘tattooed’ ready for my radiotherapy!
Thank you so much for your continued love, best wishes, prayers, generous gifts, support, walks, talks etc with us and with Josh & Erin too. They seem to be coping well. We talk openly now they are older, which is more helpful and we are so proud of how maturely they appear to be handling this. We have tears, upset, laughter, lots of questions and some we can’t answer, but that’s all okay. We do really value the support from friends and family of the kids and encouraging/just acknowledging what they are going through, talking about it with them, so thank you for that also – we know its not easy.
Signing off now to start my ‘low fibre’ diet – after perhaps a beer first – it’s been a long few days!!!
Best wishes
Dave & Ali xx
Good to be unique or not!!!
Thanks very much for messages/calls asking how we’re getting on this week.
Results from lung function tests & PET scan are in: In summary, it confirms findings from my CT scan – there is this new lung cancer on my remaining right lung – Adenocarcinoma.
In addition, there are potential small nodules of Meso on my left, near the heart which we weren’t aware of. So there’s potential ‘little bits of Meso’ on both sides!!! We say potential as they are small & biopsies can’t be performed due to the risk.
Proposal is still to prioritise the Adenocarcinoma, then review the Meso in 2/3 months time.
The Meso is still very tiny & what they deem slow growth so we take hope in that. However, it’s really tough and hard to get our heads around that the Meso is potentially on both sides now, yet we have to sit & wait for treatment! We trust the medics, it’s a positive it’s so slow & small, yet it’s also extremely hard as there’s so little research/knowledge on how best to treat me with being a ‘non typical’ case!
To compare with the adenocarcinoma, we’re in a ‘queue’ now waiting to see a specialist, the treatment appears common & there’s a process to follow which is good, except the waiting as we don’t know when next steps will happen!
Extra irony this week is that Ali has tested positive for Covid for 3rd time! It’s not exactly as if she’s at full health out mixing with lots of people! So she’s back in bed frustrated, sleeping it off & trying to stay away from us!
Kids are doing well. Back in school this week, Josh on second GCSE mocks & they really do help to provide distraction, humour & routine!
Thanks for the overwhelming continued amount of love, offers of support, checking in on us etc you’re all kindly providing to us all. It’s so much appreciated.
Lots of love
Dave & Ali xx
davestaleyblog 