It was only two and a half months ago that I turned 39. My birthday "bash" was great. Cancer was pretty much put to one side, and we all partied like it was 1999, haha. Photos of john and his brothers and me and my ex-workmates. Everyone looked so cheerful and we all really enjoyd each others' company.
Fast forward a month an a half and John is having trouble. So bad he needs a syringe driver and can't remember where the toilet is or how to use a fork. He improved after the steroids were increased to maximum dose. He's still on that dose. I complete an online course for looking after myself while looking after all of these here, but as it ends, the "episodes" that resulted in the driver occur and I am back to square one.
Fast forward another week and we are told dacarbazine stopped working. We could tell, i.e., the rapid decline and need for syringe driver, etc. Ipilimumab is agreed as the next stage of palliative treatment. but first a blood transfusion and some palliative radiotherapy. At the first appointment for "ipi," on the way out, his leg gave way in a strange, jolting-type of way. Bit spooky, but we just rolled with it.
Fast forward another week and his right leg won't do anythigng he wants it to do. He needs help going anywhere, even down the hall. He is developing quite an unhealthy-sounding cough.
A week of antibiotics and radiotherpay later, he is in hospital with severe pneumonia and legs that completely do not work. He cannot feel his bowels nor his penis, so is catheterised and wearing nappies in hospital. He is on oxygen; he is dazed, more so than usual; he is embarassed; he is frustrated; he is scared. The children miss him desperately and have bouts of crying in school where everyone keeps telling me to call if we need anything. I say, "Thank you so much." But I know I will not ring. I don't know them well enough.
He is coming home from hospital tomorrow and I am scared shitless, too. I can only hope I can care for him the way he deserves. Am I capable of looking after all of his needs and the children's? Will I be the carer I would want to have if the shoe were on the other foot? How will we cope?
He has asked me to marry him, properly. I want to, but worry his family will not see it the wayhe or I would see it. Especially his brothers. he has no insurance, no savings, no nothing really. Carers will be paid for by myself. As will the solicitor and fees for his will. But I still fear their response to his making me his executor and giving me lasting power of attorney for the interim.
I am so anxious I cannot sleep most nights. When I do sleep, it is fitful - full of anxious thoughts and dreams. I do not want to feed the fear. I want to be strong, and positive. But where does positive fit in this scenario; this constant barrage of phone calls and visitors and well-wishers and appointments and advice and new equipment.
I need to find my, "This too will pass," face. Put on my "live in the moment" helmet. But I have misplaced these and feel overwhelmed and exhausted.
