Hi there,
Having already reeled off a lengthy spiel in the thymoma cancer group, which seems relatively quiet, I'm turning to you for some help and reassurance.
I won't bore you with all the same details but basically I've fought to where I am now. I have Thymoma. Diagnosed Mar 21. Chemo until Oct 21. Didn't work. Oncologist wrote me off to palliative care. I pushed for referral to Guys. Offered surgery Xmas. Hospitalised Jan due to thymoma problems resulting in Bone marrow problem , aplasia, and receiving weekly blood transfusions. Op was off as too risky but have fought to where we are now, without Oncologist support, which is that Guys now offering surgery. No Cancer care in that time, 'Mary' as I call her now spreading to left lung pleura. Surgery is big, long and risky and will remove my right lung. I don't want an operation BUT I don't feel I have an option. I'm only 51, adult family and hubby, and I don't want to die! I feel I've got to give it a go, else Mary wins without a fight, and I suffer in the process. I'm feeling terrified,scared and alone (even tho surrounded with love).
Hi Chestnut and welcome to the Online Community although I am sorry to see you joining us and to hear about your ongoing journey.
I have been on my rare blood cancer rollercoaster for over 23 years now and have had a few run-ins with the threat of palliative care but I am still around. You are having a challenging time and I do hope that you can navigate to a satisfactory outcome.
As you know the Community has various support groups (discussion rooms) and let’s hope that someone pick up on your post in the Thymus cancer group.
You may also want to look at the Lung, secondary cancer group. These are safe places to talk to others who may have a similar diagnosis, treatment experience, to ask questions and get support.
Macmillan have many support services so do check out the Macmillan Support Line is open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. These services provide cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear.
We also have our Ask an Expert section but do allow a few working days for a reply.
Talking to people face to face can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing.
Give me a shout if you need further help.
Best regards.
Although my type of cancer is incurable I am doing good and living a full life.
You are spot on that it’s good to talk with others navigating the cancer journey.
Do check for a local Maggie's Centre near you as these folks are truly amazing. When I say ‘local’ I am in Inverness and I regularly talk with folks in our local centre who have done a 2-3 hr drive from the North West of Scotland as this is how much they see the support available from the team to mean to them.
