We are *hoping* to be travelling tomorrow, ending up in Florida by Friday evening. Visiting with Minions, and doing our VIP tour meeting Santa, and the Grinch and doing Universal parks after hours stuff.
I mean, we could still be thwarted by strikes and delays, but we are going to try!
We have club level so the cancer-food-sleep issues one can always get a drink and or a snack.
His consultant has told us to make the most of the chance, since the treatment, testing third new cancer whirl begins afresh in January.
SO, fingers crossed.
I had to put my tests off til January, cos kids illness, so I am a bit cross.
But most importantly, all my lovely people, wishing you a restful, and peaceful holiday season, with the kind of joy and hope for health that works for each of you.
I would not have made it through this year without you all, so, THANK YOU
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Thank you! We are home again! OMG Florida was COLD! Like ZERO DEGREES cold! Still, Miss M travelled very well over all, and the Army got us through border control faster than usual, and our specific train home was NOT cancelled, so, all that was good. DH is really NOT well enough for such endeavours, and we will not be making any more trips, but, we all managed to do some fun things, and make memories.
Oh my Buddy, wow, I hope everything works out brilliantly and to plan.
I hope it isn't too stressful for you taking responsibility for all the planning and implementing of it all.
You are fully entitled to feeling more than a bit cross that your tests have had to be put off till the new year because of the illnesses of others again.
Fingers and toes crossed for you, don't you worry I can still drink hot chocolate and eat shortbread and Heroes with my digits crossed.
Such lovely sentiments that I also wish you a very restful, and peaceful holiday season, with the kind of joy and hope for health that works for each of you in your family.
I also would not have made it through this year without you, so, THANK YOU
Thank you! I hope your Christmas has been good thus far? All the logistics of our trip were perfectly straightforward.
We DO need to actually accept that DH is no longer for travelling. And actually the more ill / anxious etc he is, the more cruel he will be. I am planning to e mail his CNS tomorrow, I *really* need to have somewhere to talk about everything openly. He *is* allowed to need things, but, actually, that doesn't negate anyone else's needs.
Oh, I am so glad all your hard work in planning your holiday went smoothly.
I think that your words are so true that when a person feels more ill/anxious/etc. they can be very cruel, but it is so cutting, unwarranted, unfair, unloving, uncaring etc, etc. and it would get me to the bone.
Unfortunately when people get so self absorbed by the fear and out of controllness of their own situation they often bite out at others and yes, their nearest and dearest who they should be eternally grateful to caring for them and giving up their whole life to be always there for them.
Yes, you definitely deserve to get therapy for yourself and perhaps your new years resolution could be to look after yourself as well as you look after others.
I believe you have tests to be ordered in the new year.
Our Christmas went as as well as it could because John's sister died of Motor Neuron Disease and Covid a couple of days before. Her funeral is not till 31 Jan. We went to his family yesterday and John's nephew and niece have been absolutely wonderful and are amicably organising everything.
Please let us know what the CNS says
I will raise my hot chocolate to you on New Years Eve
Please keep using us when things get tough. xxxxxxxxxxxxxxxxxxxx
I found the holiday to be upsetting and exhausting. Because, while I KNOW it's not his fault he is tired, and can't hear, and needs specific food at specific times, and is autistic so cannot alter his planned schedule for anything, he is actually an adult, and he now ALSO cannot accommodate the children needing different things from him. So, my whole holiday was trying to make sure no one felt hurt or missed out, or had time for things. Sometimes I just couldn't be enough person to cover ALL the needs at once, and that meant someone got told off by him.
Mostly, this makes me sad, because I KNOW we cannot go on another holiday. But ALSO it makes me sad because, his need to have his needs acknowledged and met is now greater than his wish to find ways to still communicate with me or be with us.
I know this is because he is more ill, but, it would be nice to have a relationship and not just a care responsibility.
I'm so sorry it was so difficult for you especially when you have your own anxieties regarding health and the upcoming tests. You're in an impossible situation and my heart goes out to you. Definitely contact the CNS and seek that support you need so much. My admiration for you is beyond words though I know that will be of small comfort.
Do please try to get at least a short amount of time away from everyone whenever you can. No phone with you, just even five or ten minutes to yourself for a tiny break. You do need to care for yourself before you can be expected to care for anyone else.
As for DH, good manners do not permit me to make my opinion public. Yes, autism is a pig of a condition as I know from personal experience but, he IS an adult and ought to be able to exercise a modicum of self control. He must be so very frustrated and scared but, it's grossly unfair of him to punish you and his children this way.
He's fortunate to have you. In your position I would be asking him if he would rather be alone and if not, to consider the impact his behaviour is having.
Oh, you must be so, so exhausted emotionally, mentally, physically and practically being piggy in the middle on your long awaited holiday and trying to keep everyone happy and then getting cutting remarks with no feeling of warmth, yes, you are worth so much more than that.
Cancer can be all consuming for the person who has it and it all consumes the family through no fault of their own. You certainly didn't sign up for it.
Counselling and this forum are probably the only places that will really understand you, other people just cannot understand.
Sending you a great big supply of virtual hugs to use when needed and just shout and I will send you another supply. xxxxxx
Honestly, I typed out a long response with some of the examples where he just couldn't cope with any one else needing anything, but I felt bad for complaining about him so I deleted it. I try to understand what he needs and make sure it is provided, it's not his fault he is ill. But, by the same token, it's no one else's fault either, and no one else deserves to not have their needs met.
I just don't know what to do anymore. It's so lonely and impossible. I end up just choosing which person I mind yelling at me less at any given moment, and trying not to mind missing / not having whatever I have to give up to minimise the number of people with cause to complain at me.
Dear Drunk Jam, You really deserve for things to work like good clockwork and for you all to have a wonderful time, and as restful as it can be. Happy Christmas in the warm, and alll the best for 2023
Thank you! Everything went as well as possible, all except for the warm - No warm to be had I'm afraid. I mean, we're Welsh people so we packed ourselves up in lots of layers and had fun anyway!
Ah! The hardy flexible Welsh - nothing to beat them. Glad you all had a good time and maybe stocked up some strength for upcoming trials. Happy New 2023 - may it bring all things positive
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