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.
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
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
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
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 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
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
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