Hi all,
Not sure what I’m expecting, other than I’m feeling very alone & quite isolated. I went back & forth to my gp with swollen joints my ankles knees fingers wrists, my back hurt as did my hips. My gp sent off bloods but I didn’t have any arthritis markers, but they sent a referral for me to be seen at a local hospital, after almost 9 months of waiting & being almost unable to walk, I paid to see a private rheumatologist who diagnosed me with rheumatoid arthritis & explained not every one has markers & those who don’t tend to fair better on treatment. He wrote to my gp & the hospital with his findings. A few days later I had a phone call from the local hospital & an appointment a few days later. They discussed treatment scanned all of my joints & the last thing was a torso X-ray, whilst in the room the radiographer advised she was unsure if my rheumatologist would want another X-ray SSE went away 2 mins later took another X-ray & I was allowed to go home.
The following Monday my mobile rang, it was my rheumatologist not the pharmacy team as expected, they couldn’t start me on the treatment because they thought I could have lung cancer.
I was diagnosed with stage 4 lung cancer May last year, I was going to have surgery to remove the top lobe after radiotherapy, but the final scan of my body was my brain & a tumour was found near my brain stem, so surgery wasn’t an option & I was given 12-18 months to live. I had staging done at the beginning of May & again at the end of May & my cancer had almost doubled in size & was 11.7x9x6 cms.
I had SRS treatment for my brain tumour, then 4days later started 10 rounds of radiotherapy to my right lung, no-one advised how painful it would be as the cancer initially expanded. I was given slow release morphine plus liquid which helped with th pain, but I struggled to sleep for what seemed like weeks.
i had a break of about 4/5 weeks before starting 2 types of chemotherapy plus immunotherapy of which I had 4 rounds. I now have just immunotherapy every 6 weeks for up to another year as long as it holds my cancer at bay & I continue to tolerate it.
My oncologists is of the opinion that my cancer kicked off at the same time as my rheumatoid arthritis 10 months before I was diagnosed. Had I not had to wait so long to be seen for my arthritis I’d not be terminal. In between time just as I started chemotherapy my then partner was not supportive, was unloving totally uncaring, became totally self obsessed or maybe I’d not noticed, told me as soon as I was gone he’d sell the house we’d chosen together & move, days after I was given my prognosis, he had me in tears so often telling me I was the uncaring & unloving one, when I’d attended almost all appointments alone, so I ended the relationship & have continued my treatment alone with my dog, who’s been my strength & purpose.
i saw my oncologist Friday, my right lung is stable but I have an infection in my left lung, so I’m on antibiotics, results of my brain scans aren’t through yet. The last ones showed another brain tumour, I had more CT’s & MRI’s a new mask made & 2 days later the hospital rang to say the SRS treatment wouldn’t be going ahead because the new brain tumour had shrunk to being almost invisible, so I’m hoping it’ll be the same & not an issue.
I’ve treatment next week as long as my bloods are ok. …
