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’!!

Treatment Room

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

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