Advice

Hi

I don't have any experience with mesothelioma, as I had a different type of cancer, but I noticed that your post hadn't had any responses so far.

Probably the best people to ask, with your dad's permission, would be his hospital team. Everyone responds differently and they know all your dad's medical details. Does your dad have a CNS (cancer nurse specialist) as they are usually very knowledgeable and can answer questions? 

When you have a minute, it would be really useful if you could pop something about your dad's journey so far into your profile as it really helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

x

thank you and ive done this now to thanks all so new 

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. If you have access to one, visit/call a Maggie's Centre - it's not just for the patient, but for the relatives as well; if lockdown prevents a face-to-face meeting, the counsellor will phone you as often as you want. 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. 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. He'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 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 diagnosis 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 comforting. Take care and stay strong. x