Hi @Former-Member and thanks so much for keeping me in your thoughts, as you do so many of us here. I do apologise for not updating this thread in a while. I have been having such a hard time of it personally these past couple of months with my own PTSD, and that has been taking most of my attention up until the last couple of weeks. But that has settled somewhat now, and I again need to concentrate on others in my life who need me.
Hubby has been showing all the signs of a likely recurrence of the Encephalitis which had him hospitalised for a month last April. It's hard to know, because some of the symptoms are similar to Parkinson's Disease. He's had numerous falls in the past 2 weeks. Much the same as this time last year when he was being treated for his cancer with Immunotherapy. And that caused colitis and then encephalitis (brain inflammation). Saw his GP last week and he wants him to see his neurologist asap. We have none locally. The one we have been seeing comes up from Sydney to a town some 45mins from here, once a month. He's not back here until early April, still a couple of weeks away. I spoke to hubby's Oncologist a little over a week ago and expressed my concerns about the possibility of encephalitis setting in again as he continues to wean off the high dosages of anti-inflammatory medication used to treat it last year. The Onco agrees that he is a prime candidate for a recurrence, and also said we need to see his Neurologist asap. Meanwhile if his condition declines further, I am to get him immediately to the Emergency Dept at our local hospital. Thing is, it's been a slow decline over the past couple of weeks. Initially just small signs - eg more frequent falls, headaches, sore stiff neck, pale in colour, glazed vacant eyes, hallucinations, periods of paranoia, confusion, forgetfulness. But he doesn't have a temperature so far, which is one good thing.
I really just want someone to do some tests to try to rule out encephalitis! Untreated encephalitis can cause irreparable brain damage. Unfortunately all this could also be quickly developing Parkinson's Disease, which has been hastened by his bout of encephalitis last year. Am I imagining all these symptoms and blowing them out of all proportion? I think not, they are there and they are real, whatever the cause. I recall constantly telling them this time last year about similar symptoms, and they did nothing about it. It took his collapse at home last April, to finally be taken seriously. Even then it took them over 2 weeks in hospital until they correctly diagnosed him with encephalitis. Now ... I just don't know, I dont want the same thing to happen as last year.
I've still been getting very little sleep, as I find myself constantly on alert as hubby is up and down out of bed numerous times at night. Its always a concern that he will have another fall or I'm needed in some other way.
I so badly needed a break. Hubby had been really keen to get away with his mates late last week for a few days, his first break from either home or hospital in about 20 months. Unfortunately his paranoia convinced him I was trying to sabotage his health to prevent him going. If only he knew how much I wanted him to be well enough to go! For him as well as for me. So I took it upon myself to increase his medication dosage several days prior to his scheduled departure. This was in the hope that it may help to stabilise him, rather than continue to go slowly downhill. And with luck, to pick him up enough to be safe to go away as planned. Thankfully it helped him quite a bit over the days prior to his trip, and he was able to go last Thursday. His long time good friend who lives across the road from us was his carer for the 4 days he was away. I drilled it into him all of his different meds, and what they are all for, and also gave him a rundown on things he will need assistance with. He has been in good hands, and his friend has been taking good care of him thankfully. I have phoned hubby a couple of times each day, and he sounds so happy to be among some of his friends and acquaintances whom he hasnt seen for a couple of years. So any risks to him going, have been well and truly offset by the benefits he has had by going. I am really pleased for him.
I really want someone else to make these medication decisions about medications etc, someone who knows such as a medical professional ... not me. I just get the feeling that I'm being fobbed off and hubby put into the too-hard basket. The oncologist doesn't want to know because his cancer is now in remission. Yes, the treatment caused the encephalitis, so he has an interest, but that's about it. With immunotherapy it's something he can add to his study papers I guess. But he can't assess his neurological state or treat it. I've already upped his strong anti-inflammation medications (which is what they'd do if encephalitis was confirmed) but this is off my own bat, and I do not like that. I'm stuck between a rock and a hard place ... and don't know what else I can do.
I've done very little the past 3 days while hubby has been absent. Just trying to get some decent sleep at last, eating if or when I feel like it. Spending time with little Holly. I feel like I have done very little in fact, completely non-productive. But maybe thats as it should be? I still feel terribly tired though, I had thought I'd feel better in that regard. But no. Hubby will arrive home mid afternoon today, so it will all start over again. Hopefully we can keep him stable until such time as we see the neurologist for assessment in two and a half weeks time. Seems so long away.
Last Wednesday my Mum was diagnosed with cancer of the spleen after numerous urgently arranged scans and tests. She has an 8cm and a 2.5cm tumour on the spleen. They do not know if it is primary or secondary. But cancer of the spleen is very rare, and the more likely is that it's metastasised from breast cancer. She had breast cancer some 2 years ago and had a mastectomy at that time. She tells me she is 82, old and ready to die. Essentially she is giving up. I tell her that 82 isn't considered that old these days. I told her she needs to wait until she sees a specialist to determine if the cancer is primary or secondary, fast or slow growing, what treatment options are available and the likely prognosis with or without treatment. Removal of the spleen is an option I believe, if no other cancers are found. Though that leaves the person very prone to any infection afterwards. The spleen is a filtering organ within the lymphatic system of the body. They are waiting on further tests to rule out other cancers in her body, which may well have a bearing on any decision.
My brother broke some surprising news to me two weeks ago as well. They are pregnant! Unplanned and very unexpected. They are both still in shock. My brother will be 56 next month, his wife is 45 but turns 46 around the time of expected delivery. Their other kids (both boys) are 20 and almost 18. Their youngest child, my little niece, would have been 15 at the end of next month had she not died in the car crash going on 4 years ago. My SIL had thought she was going through early menopause, but when seeing her GP a couple of weeks ago, it was confirmed that she was almost 2 months pregnant. So much for being on the pill! Anyway, due to her age, they now need to have a heap of tests, scans and ultrasounds to check for birth defects or abnormalities. They had a major test last Thursday which may well determine what they decide to do. So it's a really worrying time for them as they go through all this. They should get their results later this week. Given her age there is also a much higher risk of miscarriage in the first trimester. It will likely mean she will need to give up working, which will not help their precarious financial situation either. They so certainly did not need any of this to add to their many existing troubles.
Perhaps this is a completely unexpected and most unlikely blessing for them. Ideally all tests are good and they have a healthy baby come October. But ... if it turns out that they need to terminate for any reason, or lose the baby, then it is just another tragedy, on top of their former trauma around the loss of their daughter. Something that they really do not need, and possibly cannot cope with. For now, they are not making any decisions, they will wait until all results are in, and then make an informed decision on what to do. So much for them both to consider. Not the least being that they will be 77 and 66 when this child turns 21. But I suppose that is not unusual these days.
I recall 18 months ago I was dealing with the double whammy of hubbys diagnosis of metastatic cancer in his lungs, and Mums diagnosis of breast cancer, both coming in the same week. And now, once again, both are dealing with serious health issues at the same time. This bad news may be offset with the prospect of new life, possibly with a healthy baby on the way. My family are desperate for a piece of good news. I hope and pray that this bub may be it.
@Faith-and-Hope @Shaz51 @Zoe7 @Starta @Peri @outlander @Former-Member @Sophia1 and any other readers.
Sherry 🌸
