17-04-2019 04:19 PM
I have been meaning to mention that Lapses who is no longer on the forum was able to get a special chair for her dad through DVA that was of help to him which he snoozed in often, not sure if it had a tilt mechanism on it, making it easier for him to get out of. Not sure if something like that would be appropriate for your husband ...
18-04-2019 04:12 PM
tender hugs my @Sherry
sorry I mentioned the triplets my friend xoxo
how are you going
are you ok , we are here for you xoxo
18-04-2019 06:01 PM
Hi Shaz - its okay, you said nothing wrong, although it was terribly sad about the triplets. 😢
My brother and his wife loved the gold plated preserved rose, so I was really glad about that.
It may take up to a month for them to get the autopsy results back as to what caused the death of their baby. They have been told they will hold their baby's remains until they are ready to collect them. They are going to bury her with her big sister, in a seperate section at the base of her grave. So they have to organise that before collection. Emma would have loved a baby sister, and now she can keep her company and they can watch over each other. So sad to have lost both their little girls, it really breaks my heart. They had planned on calling her Charlotte Elizabeth. Such a pretty name. My SIL has been back at work only a few days after her operation. She does cleaning and gardening, so its physical work, and she found it very difficult initially. But seems to be coping a little better now, both mentally and physically.
My Mum has finally received word of an appointment with the cancer specialist in the City, which is an hours drive from where she lives. But its not until the middle of June, so still quite a long wait. But it will require hospitalisation for at least one night as they do tests and biopsies etc. I keep expecting her to back out of it, but so far she is sticking with it. I think it knocked her around a lot with the loss of her impending grandchild. I had hoped it would give her more incentive to accept treatment and live, but that has gone now. I am spending a lot of time phoning her every day trying to encourage her to accept outside help with cleaning, meals, nurses for herself and Dad, etc. So far its falling on deaf ears! But in reality she is not coping and living is becoming much too difficult for her to cope with, without additional help. But I will keep trying. I would like to get down to visit family in the lead up to Mums hospitalisation, but with hubby as unwell as he is, its not likely to happen.
Speaking of hubby. We saw his GP last Thursday. Unfortunately the neurologist had not sent in his report at that stage, so we had to go through everything that he said and pass it all on to the GP as best we could. He too appeared very disappointed and somewhat surprised that the neuro did not want to know anything about it. Anyway the GP after going through all the symptoms hubby has been having has decided that it is almost certain that he is experiencing an immune reaction, and likely autoimmune encephalitis as he did this time last year. Although quite a rare disease, it is not uncommon to suffer a reoccurence of it within 2 years, once you do suffer it. Apparently hubby should have been monitored for it all along since his month long hospitalisation last year. But nobody ever told us and this has never been done. Likely it was the oncologist who gave him the immunotherapy treatment for the cancer, who should have been monitoring it, but I guess he main interest has been the cancer itself. Which is now in remission. As far as he's concerned ... job done! A bit like the neurologist with the Parkinsons Disease treatment.
So the GP has given us a referral to the same neuro in the City hospital who treated him when he was to dreadfully sick last year. That has been sent off and I heard from the neurology Dept on Monday to say that the neuro wants hubby to be admitted for a number of tests to either confirm or rule out encephalitis and to discuss treatment. We have been put in the hands of the bed manager to allocate a bed when one comes available in the neuro ward. We were told it wont be until after Easter, but know nothing more than that. I hope we are given at least a couple of days notice, as I will need to organise accommodation in the city for myself and arrange a carer for Holly. I am so not looking forward to going back for another city stay. I am hoping I may be able to get into the hospital accommodation for out of towners this time. Something I was unable to do last year while there.
So finally we have something being done, someone listening and taking things serious. Oh ... the nurse said that if he worsens or goes into a coma ... to get him to the local A&E asap. I think I knew that one.
So I am really just waiting for word on when, so I can make plans.
18-04-2019 06:26 PM
💜🌺 @Sherry .....
18-04-2019 06:31 PM
18-04-2019 07:14 PM
I am glad you spoke to GP about the neurologist @Sherry and hope things work out so you can stay at hospital family accommodation.
19-04-2019 09:08 AM
Also I see you doing the rounds there @Maggie , always so nice seeing you around. I meant to tag you in my update yesterday, but failed to do so. @Zoe7 I realise you may not be around much for a few days. But I want you to know I am thinking of you and sending you love and care. Sorry that your Lions didnt put up a better performance for you last night. Maybe Parra will do better this weekend? I note that play the Tigers on Monday afternoon. Should win I reckon.
Yes @Darcy hubbys GP was quite sympathetic and understanding about our feelings regarding the other neurologist. And he has clearly taken it upon himself to get things moving in this other direction as soon as possible. Which is great.
Oh I hope so too @Darcy re the patient family hospital accommodation. Last year when I was there for 8 nights in total, I was flitting from one accomm to another almost nightly as I chased available rooms. It was during school holidays last year too, which increased the difficulty in getting accommodation. The problem was made even worse by everything being so unstable and unknown with hubbys condition back then. Initially he went in for an overnighter to perform tests and scans which could not be done at our local hospital. Then they found he had encephalitis and needed urgent treatment for that. After a few days they were meant to trf him back to our local hospital for ongoing treatment. Then he developed a large pulmonary embolism from which we nearly lost him, meaning he had to stay longer. So I would check out of each accomm in the morning, only to find that I was ringing around looking for another place to stay for an indefinite period. It was such a stressful time. Fingers crossed this time it will only be the couple of nights expected.
Happy Easter to those of you whom it is a significant time. Enjoy the chocolate treats ...... 🍫
19-04-2019 09:24 AM
My boys were very disappointing last night @Sherry I found it hard to watch with everything else going on. Hope Parra put up a better shoing on Monday - they didn't play well last week either so I am not expecting them to win either. I am just getting through right now but that is all I can do - very much struggling the last couple of days and will need time to get through all this. There is a lot that still needs to be addressed and sorted out but that cannot happen yet.
19-04-2019 08:02 PM
I have not been able to keep up with what is happening with any of the people I normally correspond with...obviously as I am not on here that often these days...
this is looking after me as in I have no choice...
I could not believe my eyes when I read that you are still on such a fast paced merry go round after all of this time...the medical world has much to answer for...
there are some brilliant specialists...doctors...nurses...nurses aides...admin ...caterers...cleaners...and so on...who work so hard with passion...then there are those who assume that they are the most important aspect and should not have to forward on any information...specialists rarely like talking to other specialists...
fortunately and because I always ask my specialists do send reports to my gp...fresh out of university and has finished final year...hopefully staying in small rural town in hills!..
I can only start to empathise with what you are experiencing...you are one patient lady...life of course keeps on throwing more trauma....I imagine that you are still on auto-pilot..
Feels like the only thing to do without question..
I have been there totally different scenarios...traumas...took it's toll on me even though I was adamant...
You are truly a wonderful loving member of your family and I know that your family want you to take care of you too..
I hope that accommodation and hospital situation sorted out soon and easily...
I say take care and I know that you take care of everyone so...
take care of you too...from all of your many friends here on the forums xxx💚💛💜🐾🌺
25-04-2019 09:37 PM
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