Christopher135MPS

For cancers with longer prognoses, how do you help your patients deal with the fact that they still need to do “normal” things, like go to work, when they know they’re going to have less time on earth than most people?

I’ll likely die in my forties, fifties if I’m lucky. I’m currently in my late thirties. I was diagnosed in my late twenties. Stopping work wasn’t an option - I still need to pay for accommodation, food, transport, not to mention trying to have money to enjoy my life.

But I feel like I’m just burning up what little time I have. It feels like some kind of cruel joke that my life will be shorter than most, but that I have to spend what time I get on mundane shit because I’m living longer than most cancer patients.

I’m not trying ti sound ungrateful - my diffuse astrocytoma is way better than a GBM. but this just eats at me. All I want to do is explore the world and travel and spend time with my family. Things I’d normally do after a successful career and retirement. But I won’t be retiring? My life insurance isn’t accessible until two doctors say I’ve only got two years left to live.

That’s kind of you to say :) the hug would be nice :) I try to focus on the positives and remind myself how it could be worse. Six months post diagnosis I had my first craniotomy. I woke up with zero neurological deficits. On the ward bed across from me was a man who had a GBM, he’d basically had a hemispherectomy (half brain removed). He couldn’t eat, could barely mobilise, barely talk. He would have died that same year. I’m still alive nearly ten years later.

I lost one of my best friends last year to stage four oesophageal cancer. He got four months from diagnosis to death. His presenting symptom was a sore neck. He went from healthy and symptom free to dead in four months.

So there’s lots of ways I could be worse off. But I recently started having seizures, so I can’t drive at the moment, I already lost my dream job to the diagnosis because of medical fitness, and now I’m losing the job I don’t like but I tolerate because it keeps me in healthcare, so I’m doing desk/admin duties, I can’t even pick up my baby nephew because I might seize while holding him and drop him.

So I’m just dealing with some extra shit at the moment and it’s hard. I get to have regular MRI’s and every time so far they say “no worries! Good news! Keep going about your life”. But one day I’ll have an MRI and they’ll say “sorry, we’re so sorry, but your tumour has advanced and you have 12-14 months to live. And during that time the tumour will rampage through your brain, causing neurological deficits and seizures”.

And I’m supposed to go to work while waiting for that day? What the fuck?

Just like there are legal excuses to assault, there are legal excuses to discriminate. For example, a fire department is not obligated to hire people with one leg.

Thanks for taking the time to reply Monica :) I really appreciate it.