I've just joined this forum. My beloved husband was diagnosed with epithelioid pleural mesothelioma on 1 April (!) 2020. We met late in life, and it has been a struggle to come to terms with the fact that I will be losing my soulmate well before his time. In addition, he was diagnosed during the first Covid-19 lockdown and it was a very, very difficult time - being forced to shield; desperately trying to secure food deliveries; sanitising absolutely everything that passed through our door (including the post), and we have absolutely no family so we were really on our own. For the first three months or so I was on auto-pilot trying to comprehend the diagnosis and deal with the Covid problems. At the end of the first lockdown my body and mind just collapsed out of sheer exhaustion: I had a bit of a breakdown and am now on antidepressants and in counselling. In addition, our beloved Maine Coon, Saffy, died suddenly at the age of 6: she was eating, playing, drinking, behaving as normal, but then she curled up in her usual spot for a nap and never woke up. Would that we could all go that way. However, it ripped the hearts out of us and made us even more vulnerable. If you have access to one, visit/call a Maggie's Centre. Steve and I visited a cancer counsellor at our local Maggie's and she has made a HUGE difference. Our Macmillan nurse, Nicky, has been a tower of strength. I thought at first that I could cope alone, but I CAN'T, and neither can Steve. The support out there is tremendous, so I urge you to seek out any and all support that's available to you. Meso is a horrific, insidious disease caused by environmental, not lifestyle, conditions. Steve is 62 but we've pinpointed his sole exposure to asbestos as being when he was 16 years old and joined the Merchant Navy. I If you contact your local Asbestos Victims' Support Group, they may be able to put you in touch with law firms who specialise in prosecuting meso cases against the company/companies responsible for negligence: these are no-win no-fee firms, and we have engaged one whose barrister expects to win the case. If we don't win, we won't have lost anything, but if we do then we'll get access to private medical treatment and financial compensation. Steve's just started an EU clinical trial which involves 2 x chemo and 2 x immuno drugs (1 being the trial drug) every 3 weeks for at least 4 treatments. He IS having side-effects (fatigue; skin rash), but is determined to carry on. All I can say is that help is available, and please take it (Macmillan, Cancer UK, Maggie's Centres, Asbestos Victims' Support Groups). Also, we consider ourselves 'lucky' insofar as Steve's death will not be a sudden shock - we are able to plan our lives with his death in mind (we have learned thT AVOIDING THE 'D' word is unhelpful) and have learned to value each day and live for the moment. 'Mindfulness' helps (check it out on the NHS website). I am horribly aware that there are so many people with exactly the same diagnoses and similar short prognoses. Please stay strong and know that you are NOT alone. Mesothelioma UK has a FREE video/DVD which I found very helpful. Also, if you can manage to spend a few pounds on a paperback, Kathryn Mannix's 'With the End in Mind: How to Live and Die Well' is a great book: I and my husband found it informative and very, very comforting. Take care and stay strong. x
Hi TDD and welcome to the online community
I'm sorry to read that your husband was diagnosed with epithelioid pleural mesothelioma earlier this year. I know what a tremendous shock having a cancer diagnosis brings.
Thanks very much for taking the time to tell the group about your experiences and I'm sure they'll find it useful.
Take care x
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Thank you sharing your story.
My father was diagnosed also with epitheliod pleural meso. He has been given a provisional date to start treatment on 17th Dec and we await whether he meets eligibility criteria which gives a 50% of him getting immunotherapy on top of chemo. I’m so scared and overwhelmed at the prospect of loosing my strong, healthy Dad who in a matter of months is thin and frail. I have bought How to live and Die well and am already finding comfort in reading it. Dad has consented for the trial too. Must be the same one. Two chemo drugs of Pemetrexed and Carboplatin + Bevicuizamab and +/- the immuo drug Atezolizomab. Dad too is determined, I just hope he has the inner strength. I feel robbed already that it took the doctors 8 months to reach this diagnosis as he’d have been so much stronger, even if he was diagnosed in just half that time but it’s the past now and I can’t change things. Dad is also going through his Asbestos support group and I hope he might be able to get compensation too. Please feel free to private message, it seems we are in similar situations. Where are you being treated? best wishes
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