@Zoe7 @Mumi @outlander @Shaz51 @Faith-and-Hope @Sam3 @Starta @Peri @BlueBay @Sophia1@Former-Member
Sorry folks, its another long update from me after being somewhat quiet over the past week.
It's been another difficult week. Just as I'm through my worst month of February and the hope that I will start to be less triggered and be able to finally get some half decent sleep and get back to some normality. But the past week has simply continued to deliver bad and worrying news. Darcy, I have included you here as well, because this post relates also to my carers side, but didnt want to duplicate. I hope thats okay. There shouldnt be anything triggering to anyone in this post.
Hubby has started showing all the signs of a possible recurrence of the Encephalitis which had him hospitalised all of last April. It's hard to know, because some of the symptoms are similar to Parkinson's Disease. He has had numerous falls in the past 10 days. That's 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). Last March was a roller coaster, all the way down and seemingly no way back up. I honestly do not want to allow hubby to go down that same path now. Saw his GP last week and he wants him to see a neuro asap, but we have none locally. One comes up from Sydney to a town 45mins from here once a month. Cannot get in until April. I spoke to hubbys Oncologist last Thursday and expressed my concerns about the possibility of encephalitis setting in again as he continues to wean off the Prednisone meds which was used to treat it last year. He remains only on a very low dose currently, possibly not enough to mask the symptoms of any possible recurrence. The Onco agrees that he is a prime candidate for a recurrence and the after effects of immunotherapy can last for years, even after no longer under therapy. So he is pushing to get him in to see a neuro asap to assess the likelihood. Meanwhile if his condition declines further, I am to get him immediately to the Emergency Dept at our local hospital. Trouble 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, vague, forgetfull. But he doesn't have a temperature so far, so that's one good thing. Though sometimes they only have a mild temp in the early stages. I really just want someone to do some tests and rule out encephalitis! Is that too much to ask? Untreated encephalitis can cause irreparable brain damage. Unfortunately all this could equally be as a result of fast developing Parkinson's Disease, which has been hastened by his bout of encephalitis last year. Normally it is a slow regression for people with Parkinsons Disease. His sudden decline in mental and physical ability is not indicative of parkinsons. But, am I imagining all these symptoms and blowing them up out of all proportion? I recall constantly telling them this time last year about similar symptoms, and they did nothing about it. It took hubby's collapse at home early one morning early last April, and me unable to help him up, thus calling an ambulance to take him to hospital. Even then it took them 2 weeks before they correctly diagnosed him with encephalitis. Now ... I just don't know. Perhaps I'm panicking over nothing. Perhaps my own poor state of ptsd-induced anxiety and lack of sleep over the past month has contributed to my concerns.
Even though my nightmares and flashbacks have subsided, I am still getting no sleep. Instead, I am constantly on the alert in case hubby tries to get out of bed and has another fall or calls out to me for help. I so badly need a break. He was really keen to get away with his mates later this week, his first break from either home or hospital in about 20 months. But unless he makes a swift turnaround, that is not going to happen. It was going to be a few days break for me as well as him. But right now, it's looking highly unlikely,and would be foolhardy of him to go. He thinks I'm trying to sabotage him to prevent him going. If only he knew how much I want him to be well enough to go! For him as well as for me. This is his paranoia setting in. I have taken it upon myself to increase his strong anti-inflammatory meds in the hope that it may help to at least keep him stable, rather than continue to go into decline. I started that yesterday, but so far little change. I want someone else to make the decisions, someone who knows ... and that's not me. I just get the feeling that I'm being fobbed off. The oncologist doesn't want to know because his cancer is in remission. Yes, the treatment caused the encephalitis, so he has an interest, but thats all. Admittedly he can't assess or treat the neurological effects. But we cannot get in to see the neuro! Stuck ... and not knowing what to do. Meanwhile, hubby is talking about where he wants his ashes scattered, who he wants to do his eulogy and what music he wants played at his funeral.
On Monday I heard from my Mum that she needs to have a stack of scans and tests done. Her latest blood tests have indicated a likely spread of cancer. She had a mastectomy in mid 2017, and she is convinced that cancer has now spread to her bones. With her blood tests, it is certainly a possibility, but it could also be something innocuous and easily fixed. They got her in very quickly for CT Scans and bone scans last Wednesday. No results yet, but likely to get them next week when she next sees her GP. This coming week she has more blood tests and a mammogram. She tells me she is 82, old and ready to die. Essentially she has given up. I tell her that 82 isn't old and that she needs to wait and see what all her scans determine before giving up like that. But I can see that if it is cancer, she will be not seeking treatment, it will be allowed to run its course. I accept that decision, as I expect I would be the same. So now I have both Mum and Hubby talking about dying. And my Dad remains seriously compromised after his stroke last year, and reliant on my Mum for his care.
I alluded to some news regarding my brother and his wife in my update last week. They are pregnant! Unplanned and very unexpected. They are both still in shock. My brother is 55, his wife 45. Their 2 sons are now 20 and 18. Dear little Emma, their youngest child, would have been 15 next month had it not been for the car accident in which she died almost 4 years ago. My SIL had thought she was going through early menopause, but when seeing the Dr, it was confirmed that she was pregnant. So much for being on the pill! So now they are having to have a lot of tests scans and ultrasounds done to check for birth defects or abnormalities. It's a really worrying time for them as they go through all this. The likelihood of getting pregnant at 45 and while not trying (on the pill), is fairly remote. And it also greatly increases the chances of birth defects, hence all the recommended tests. But ... maybe this is a completely unexpected and unlikely blessing for them? And us. Unfortunately if it turns out that they need to terminate or she miscarries (very possible for older mums), then it is just another tragedy, on top of their former trauma. Clearly something that they 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 to consider for them.
I do have one piece of good news for the week ... I got my self-collect cervical screening test results back last week. All clear! I am naturally relieved, but also surprised. I had been thinking the worst .. of course.
Sherry 💕
