I hear you too Nick and Skypup. Today was my 3 year cancerversary. I'm still spending nights in hospital, mainly by choice, but go home every day. I'm getting my hospital bed at home on Monday, and have managed to ditch the syringe driver for oral meds. I still have a subcutaneous butterfly to use for morphine break through, but I don't need that much. I may be able to change it to oral liquid morphine and not have any things stuck in me. Should I be happy I might be home soon on only oral meds and a patch instead of dying a few weeks ago like they thought I might? I guess so. But sometimes it just seems like delaying the inevitable. Or can I recover enough to go back to living life as I was before? I hope so. But for how long?
Before my recent problems, I knew things were not great, but day to day life wasn't too bad that I could live in the moment (except when the pain flared up) and things were ok. But since then, my mortality has be thrust into my face, and then slowly taken away and replaced with some hope. I feel better (but weaker, I have lost almost 20kg), my pain is controlled, I'm hopefully treating my cancer and I may get back to a place were I cannot worry if my time is up within a few weeks or not. But has anything really changed?
I have a friend who was diagnosed with lymphoma before I was diagnosed with cancer. It was a rare and aggressive type, and he wasn't given a good prognosis. At the last moment before bone marrow transplant, he went into spontaneous remission for over 3 years. Then a few weeks ago it came back. Donor now found, and he is going through the full on chemo to kill his immune system before his transplant. So although things are grim, he does have hope for a full recovery. Something that isn't afforded to us.
Sorry if I don't make sense, but it felt good to ramble on a bit. Excuse typos if I made any.
Stage IVb age 37 Nov11
1 year NED
lymph node, lung, spine, rib and liver mets
GNAQ Q209P mutation > Mekinist Jul14
Radiation bone mets Aug14
FOLFIRI Nov14 >
Home Xmas 14