I’m writing this from the emergency department of the Royal Adelaide Hoapital. Caroline was feeling particularly unwell this morning and despite not having a temperature she wanted to be admitted. She is currently off having a chest X-ray and ward C6 are holding a bed for her. Hopefully it won’t be too long before we are back in familiar territory with familiar nurses and doctors.
So. It has been a hellish eight days or so. Generally I find writing about it quite easy but the past week or so I have had no desire to document the horror of watching C distressed and noticeabley decline in some areas.
Apologies in advance if this jumps all over the place.
I think when I last wrote C had come home from hospital with oxygen. She has weaned herself off that now, but the legacy of having nasal tubes pumping air into her lungs has left her with an unbearably sore and raw, scabby nose that bleeds quite often. Not gushing nosebleeds, but still, it leaves her with a constant taste of iron in her mouth. Her lips are badly cracked but it is her mouth that is causing her unbearable pain. C has hardly been able to sleep the past few nights because her mouth dries out to such a point each breath feels like it’s burning her. The doctor has also told us today that she has mouth ulcers.
For the past few days C has also had trouble with her vision. Everything seems blurry – like her eyes are covered with Vaseline. This is a particularly scary development for Caroline as she can hardly read or watch tv. She is seeing the opthamologists tomorrow to determine what might be causing it.
On top of these problems are night sweats, which require C to change two or three times during the night.
C’s spleen is still enlarged and tender, and although she had a massive build of fluid in her abdomen and legs (she put on eighth kilos in five days despite eating very little) that seems to be more under control.
But by far the worst thing at the moment is the unrelenting fatigue. C literally can’t stay awake for more than 10-15 minutes at a time. She sleeps around 21 hours a day and spends her waking hours lying down. The most she is capable of is showering and going to the toilet. The smallest task tires her. I am doing everything for her as she really can’t even make herself a sandwich. This level of fatigue is devastating for C and she has been very emotional the past week. There have been lots of tears and a worry that it is all getting too much. Initially we thought the pain meds for her spleen were knocking her out but they were adjusted and it hasn’t helped that much.
If you ask C how she feels, she just says she feels totally shit. Worse than she ever has. We are at the hospital hoping for some answers about the fatigue and her eyes, as well to be sure there is nothing going on that we don’t know about.
I hope this makes sense. We are both tired and done in by the emotions
of the past week.