Half way through cemo

According to the nurse I’m half way through through my treatments which now look like they will run on until March. Being tired is the worst side effect followed by confusion which is frustrating.

Since I live in a Northern country the sensitivity to cold can be a problem–especially with outside temperatures always below minus 10 Celsius until maybe mid-March. That said, the major problem is the incessant tingling in my fingers that eventually causes me to drop things when outside. Gloves help a bit, as does paying attention to my grip, and I am able to be outside up to 40 minutes before the tingling turns to real pain. Walking is starting to look possible again and the breathing problems aren’t as bad as I was warned about.

Since I’m going crazy inside I’ll be taking Rebecca’s advice and walking longer distances each day. Was thinking of the bike but though the snow here is pretty sticky and skidding is avoidable but my balance sucks. So no bike.

Treatment schedule originally set for once every two weeks has been disrupted by the chemo lowering my ability to clot blood or reducing my immune cell count. Both of these conditions are hard on my heart which is damaged but also hard to see through all the scar tissue from two open heart surgeries so “monitoring” consists of watching for signs of congestive failure. Simple test: if I lay down and can’t breath my heart has blown again.

Anyway, my new chemo schedule is based on platelet counts to clot my blood and immune cell counts to prevent bacterial infections – the original cause of my heart failure. Three to four weeks between treatments is now the norm.

No word from anyone whether or not all this crap is actually working. Oncology staff at the branch clinic tell me nothing. The bad interview there at the beginning of my treatments when I was so sick has poisoned any relationship with them. They think I’m a fool (being sick is no excuse for being impolite) and I keep contact to a minimum to stay out of trouble. Also, my experience has been that doctors just run in circles when presented with symptoms. They get distracted, panicky and fixed on the wrong diagnosis. This can run on for months, involves a lot of misery and ends with you dying anyway. So I don’t report symptoms but do make sure to get close to an ambulance heading for a real hospital when the end feels near. Chronic-Illness-Chicken is my term for it.

Last thing. The oncologist in charge of my care at the main clinic has dropped my case. Since she has never called to check in the whole 4 months of my treatments. Nor made any other contact beyond a postal note telling me she Does call and her letter quitting my case, it’s hard to determine what this means. Other patients tell me their main Oncologist contacts them at least twice a month so it must be me.

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