Edited version ... sorry everyone 😢
Hello dear @outlander and thanks so much for continuing to think of me here. I should take more care in updating things here, but it gets too hard sometimes with things also going awry with my own MH.
You were asking how things went with hubbys latest specialist appointment in the regional city hospital early last week. As you were aware, I had also injured my back and was in considerable pain at the time, so was not looking forward to the long drive there and back. Managed to get through it all, but knocked me around a bit physically for a while and I was taking some strong pain meds to enable me to continue to function. Definitely on the improve now though.
So ... the latest specialist for hubby. In summary ... he has been diagnosed with another rare and potentially life threatening condition. Just another one to add to the other rare disorders he has. This one probably wont mean much to anyone, and its not something I'd ever heard of before ... hypophysitis. Its a condition which affects the pituitary gland which is located at the base of the brain. Given he has had ongoing brain inflamation (encephalitis) its of little surprise I guess that its also affecting other bits and pieces around the brain. Basically the immunotherapy treatment hubby had for his stage Iv cancer, has succeeded in causing inflamation in his brain and now his pituitary gland. The encephalitis is a continuing problem and his meds have been increased again. As the pituitary gland is the overall governing body which makes the other endocrine glands function properly, it means that both his thyroid and his adrenal gland is no longer producing the hormones the body needs to function properly. As you know, the adrenal gland produces our cortisol and that is vital, and of course also has a major affect on our MH.
So more meds ... increase in some steriod ones (urgh) plus a new one started 2 days ago. All in time for our upcoming trip to Perth to visit his sick Dad. So many medications, all taken different times of the day, some with food, some an hour before food. And the newest one needs to be kept refrigerated! Complicates things when we are travelling to Perth next week. Hoping hubby does not have any bad reactions to this newest one, and that within a couple of weeks he may start to show some improvements.
Got some bad news yesterday regarding hubbys younger brother who lives in country WA. He has Bipolar and is on medications for it, has been for about 25 years now I think. Generally well controlled, but dreadful if he goes off his meds. He lives alone in a small flat and is on a DSP. He is a nice fellow, gets lonely I think, and phones us daily. He has been really looking forward to our visit next week.
Yesterday hubby and I were out at a couple of hubbys medical appointments when he would normally have phoned. But we didnt miss any calls from him, and hubby tried to phone him in the afternoon. There was no answer, but we didnt worry too much because its also the day he usually visits his dad in a nursing home. Then late pm yesterday we got word that he had been taken to his City hospital. He'd a bad fall the previous night and had lain half the night and most of yesterday on the floor. He was discovered by another of the residents at the flat complex where he lives. He's now in intensive care, and its been almost impossible to get any information. All we know at this stage is that he has been put on dialysis because his kidneys had shut down due to being on the ground for so long. We dont know what caused the fall at this stage. So its really upsetting and frustrating right now. Hoping we can get some info today.
So our visit next week is pretty timely, as now its a FIL in a nursing home who is becoming progressively frail at 93 years of age, and now a BIL with who knows whats wrong in ICU, and for who knows how long.
Just to add to the mix, my Dad has been sounding really down this week. Not sure whats going on there, but he did admit to having had another fall. Thankfully only minor and apparently no damage done. But perhaps he is just feeling more vulnerable right now. And lonely too of course. I spoke to my brother and he agreed that he seems really down and something not right this week too. He took him to his GP on Wednesday and Dad is to have some blood tests and likely an injection of iron I think it is. Maybe that will help. From what I can gather from Dad when I spoke to him today, he is not eating very well either, which is a concern. Normally he has a good apetite. And he is not sleeping either. Anyway, my brother has insisted that Dad goes out the the farm this long weekend and spend some time with him and his family. He will go out today and back home again on Monday.
So now I have to get ready for this trip to WA. So much to organise. At least I am all stocked up on necessary and life-saving meds for hubby. Will start to throw a few things into a bag over the weekend. We go by train into Sydney and then fly to Perth the following day. Same on our return journey. Organised it as relaxed and non rushed as I could. Just have to get hubby there and back now. As he mental and physical condition varies from day to day I'm never sure of what I will need to contend with. The airport will be difficult, lots of walking, waiting, etc. May need to arrange wheelchair for the airport bit. Transfers from train to hotel, hotel to airport etc will be via taxi ... door to door. Expensive but necessary.
Feeling really overwhelmed with it all. Feeling quite sick actually, but I suspect its just anxiety.
@outlander @Shaz51 @Faith-and-Hope @Zoe7 @Peri and anyone else interested. Peri I will be thinking of you when I am in beautiful Perth.
Sherry 💕
