Hi there,
I was diagnosed with localised Mesothelioma over a year ago and told I had 9-24 months. The biopsy removed the tumour but I was told when it returns it will take no prisoners. I wasn't offered any other treatment except a decortication (removal of my lung lining) which would give me a year, 'at best' I was told.
I said I'd think about it and the Consultant said he'd set it all out in a letter so I could make an informed decision. Despite several phone calls and emails it's now well over a year and I still haven't had that letter.
In the meantime I had access to my husband's work private health scheme and went to see a private Consultant. He confirmed the diagnosis but said my localised condition was very rare and he didn't recommend decortication. Instead I've been receiving 6-weekly x-rays and scans (alternately) and to date they've been clear.
Having been told my life will only last a short time longer has made every day seem a step closer to the end. With Covid it feels like I will never be able to do any of the things I enjoyed before my diagnosis. I am trying hard to retain a positive attitude but privately it's a very lonely place to be.
I just wondered if anyone out there has had a similar diagnosis. It seems there is very little data on localised Mesothelioma. I don't know how/where I got it as I haven't been in contact with asbestos as far as I know. Also it is rarer in women I understand. I have had no contact from any Oncology services as my NHS Consultant just seems to have dropped me (which is why I went private but even there, if you aren't receiving treatment you don't get access to nurses/counselling etc).
I got Covid last November but it wasn't serious enough to go to hospital so was very worried then. Again, there was no contact from anyone. I just feel very alone in this apart from a six-weekly phone call from my new Consultant.
I seem to have droned on for ages.. sorry. Be good to hear from anyone.
Hi Dobdotcom. A very warm welcome to our corner of the online community. I am so sorry you find yourself here though, in the club that no one wants to join.
It sounds like you have been let down terribly by your oncology team. You can always complain to PALS- Patient Advice and Liaison Service, you can email them with your complaint.
Covid has made a lot of us feel very isolated and lonely. When you know your life expectancy is shortened, it makes it so very cruel. There are so many things we have all missed out on in this past year, and I myself have struggled with this. We can only hope this vaccine will make a change to the situation soon, so we can get on enjoying the time we have.
You have mentioned counselling and I wonder if that is something you may want to consider. One to one counselling is available still, even with the lockdown, they are able to run this service remotely. If you call the Macmillan helpline on 0808 808 00 00 they will be able to put you in contact with someone in your area. The helpline is open 7 days a week from 8am to 8pm.
The group is a very supportive place to be. We are all on our own cancer journey, so we understand what you are feeling. There is always someone here for a chat. If you click on our name, or picture, it will take you to our own profile, where you will see our own personal journey.
Take care
