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  • villier
    villier Member Posts: 4,426
    edited 30. Nov -1, 00:00
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    Hope you managed a bit of a rest May, I am glad to see things are a wee bit better thinking of you ((((()))))........................Marie xx
    Smile a while and while you smile
    smile another smile and soon there
    will be miles and miles of smiles
    just because you smiled I wish your
    day is full of Smiles
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Hello May, you are in my thoughts. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • kellerman
    kellerman Member Posts: 741
    edited 30. Nov -1, 00:00
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    Ok It took me 3 attempts to sign in here hands swollen badly today I've forced my rings off.
    OT rang and they are bringing John for a home visit on Thursday. Another step forward but I am now gazing around looking for any hazards that might hinder the progress and why oh why did I empty the wash basket when I know I'll now have to iron everything.
    We have been offered help getting him up showered and dressed which I won't hesitate to accept.
    I've been told his eyesight will never improve...thats going to be a difficult one and his mobility isn't good. Well I can see but my mobility isn't good either. Oh boy what a pair we'll be.
    Had to buy a new hoover on Saturday as mine burned out. The house stunk so thank goodness the windows could be thrown open.
    Daughter is now ok but there is going to be a meeting at the hospital in 6 weeks to discover what went wrong and why she was so ill.
    I'm just thanking my lucky star I still have both of them.
    I do hope that this hot weather eases off for those of you that are affected by it.....me too.
    Take care everyone and your continued support is very much appreciated
    Love and bless you all. May xx
  • hileena111
    hileena111 Member Posts: 7,099
    edited 30. Nov -1, 00:00
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    Hi ay
    Great to hear from you and great to hear your good news.
    It's a big step forward {compared to how you felt} John coming home for a day.
    As for the ironing.....are there no things that could do without ironing?
    Even if they were wet again and taken out immediately they were finished and ironed with hands {not yours I know} would that not help a bit.
    What about any neighbours or friends....do they have any teens that would do it for you for some extra money? Or even someone who takes in ironing? If you did find a friends teenager that would do it they might be able to do other things to help.
    Yes...you take all the help you are offered.
    Glad your daughter is OK and they find out what the underlying cause was.
    Sorry I'm rambling....but you know me from pm's :lol: type things as I think about them...no rhyme or reason :lol:
    The hot weather is awful for me......I'm drained of all energy. My joints are playing up as well.....dreading 4 hours at a Peer Support Table in the Queen Elizabeth hosp Gateshead tomorrow and then a PCC meeting at church.
    Anyway pet you take care of yourself
    How are you? apart from your hands which sound really bad?
    We all keep asking about John and your daughter....this stress can't be helping you

    Love
    Hileena
  • stickywicket
    stickywicket Member Posts: 27,715
    edited 30. Nov -1, 00:00
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    It's lovely to hear from you, May, even though the news is mixed. At least your daughter sounds to be out of the wood now but, yes, they do need to work out which wood.

    I expect having John home will be bitter sweet -and quite difficult. My advice would be one step further than Hileena's ie forget about the ironing. In this hot weather just wearing clothes helps the creases to drop out.

    I hope your poor hands can get a bit of R & R soon. (((())))
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Hello May, it is lovely to see your name. I too am very pleased that you have your husband and daughter with you, and yes, it appears that us auto-immuners are struggling with the heat.

    I have learned over the years to ditch the inessential ironing (i.e. mine) so that has cut it down by some margin. I no longer bother with ironing pillow cases and other bedding so hopefully this might be an approach you could employ? Standards? I used to have them. :wink: You are in my thoughts. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • applerose
    applerose Member Posts: 3,621
    edited 30. Nov -1, 00:00
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    It's good that John is getting home for a visit. Sounds as if he still has a way to go but is going in the right direction. Yes, take all the help you are offered and don't be afraid to ask for more if you need it. I'm glad your daughter is ok now and that they find out what was wrong. Hope you are taking care of yourself. (((hugs)))
    Christine
  • mig
    mig Member Posts: 7,154
    edited 30. Nov -1, 00:00
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    Hi May,hope your home visit goes well,it will be emotional for both of you.Hugs (((()))) Mig
  • kentishlady
    kentishlady Member Posts: 809
    edited 30. Nov -1, 00:00
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    Hello May. It was lovely to hear from you again. Am so glad that your husband is making progress, even if it is slow. Do hope the home visit will go well for you. Good news about your daughter too. Take care of yourself. Am sending some ((())) your way. Beryl
  • dibdab
    dibdab Member Posts: 1,498
    edited 30. Nov -1, 00:00
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    Hello May,

    I'm so pleased that John is moving (slowly) in the right direction, and that your daughter is so much better. I echo all the encouragement to take what ever help is offered, and ask for more if you need to, the medical services have a responsibility to offer you both support-I wonder whether there is any way of asking for some household support to take away the responsibility for ironing etc? I'm with DD- only iron what I absolutely have to, and just lately have taken to using the local ironing shop because all this hot weather is playing havoc with my hands and wrists.

    Keep taking really good care of yourself.

    Deb x
  • stickywicket
    stickywicket Member Posts: 27,715
    edited 30. Nov -1, 00:00
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    I'm still thinking of you all very much, May. Sending love and a few more (((((())))))
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • phoenixoxo
    phoenixoxo Member Posts: 625
    edited 30. Nov -1, 00:00
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    Hello May,

    Sorry, I've only just seen this. I don't have much to add to what the others have said, just that I'm thinking about you too.

    Best wishes,
    Phee
    PsA (psoriatic arthritis) and other things since 1990. Happy to help when I can :-)
  • kellerman
    kellerman Member Posts: 741
    edited 30. Nov -1, 00:00
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    Another update. John will be coming home on Monday PM.
    Care package is in place as he can't see very well and at the home visit 2 ot's helped him downstairs...well most of the time it would only have been me so although we haven't got it yet we are getting a chairlift.
    I must admit it came as a bit of a shock thet he will be allowed home so quickly after the home visit.
    Now the fun will start as he will be frustrated when he can't do much. Thank goodness my neighbours are on holiday for a couple of weeks as they might be hearing a few choice words from this house in the near future. His car will be sold as soon as possible just to take temptation out of his way as he has been told he'll never be able to drive again and even a pint is not allowed.
    Oh boy...looking on the good side no more hospital visiting after this weekend.
    I am seeing the dreaded breast man next Tuesday 30th. This is the one my onco is frightened of.
    Care package gives me 2 4 hour slots a week for someone to stay with John which is to make sure he stays put.
    Also someone will be in each morning to get him up and showered and dressed I just might push for someone at night as well.
    So he can't see much I can't walk much and if my hands don't get any better I can't do much....that about sums it up Should be fun.
    I don't know whether to laugh or cry.
    I hope ypu are all as well as you can be. Please take care and your support has been appreciated so much. Love May xx
  • stickywicket
    stickywicket Member Posts: 27,715
    edited 30. Nov -1, 00:00
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    Oh May! I know it should be good news that John's coming home but...... There are so many buts. Even with the help it will be so hard for both of you. Being at home, John will be so much more aware of how his life has changed and, no doubt, frustrated at being cared for rather than caring, as he was when the chemo had done its worst with your hands. (Yes, I know he drove you mad at times but that's what these good blokes are like.) I don't envy you. I know what Mr SW would be like in the circumstances. Take away his comforting pint, or three, too and....crikey Moses, May, I feel for you :shock:

    Laugh or cry? Most would have drowned in their own tears by now but I suspect you, being you, will be trying to see the humour in it all. Don't try too hard. Even the toughest of us – and you certainly fall into that category – need somewhere, at times, to just weep and mourn what has been lost.

    I shall be driving up to Scotland on 30th and incommunicado (incommunicada?) for some days but you will be very much in my thoughts. I hope all goes well. ((((()))))
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • kellerman
    kellerman Member Posts: 741
    edited 30. Nov -1, 00:00
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    Oh SW we will muddle through somehow. I think a woman has to look at the positives whereas men don't see any.I' have told him he has to do as hes told but his memory isn't great caused again by the bleed.
    The pint is going to annoy him so apart from moving the car any alchohol will have to be removed as well.
    I got very negative when my SIL John's brothers wife offered me nothing but sympathy as she knows only too well how much these brothers are alike.For better or worse and all that comes to mind.
    I've just laughed at myself after spilling a bag of sugar....flipping hands. Just as well he's not home at the moment he'd be standing in it.
    If you see this pathetic woman standing at the side of the motorway on your way to Scotland please at least offer to buy her a coffee...preferably laced with a drop or two of whisky.
  • hileena111
    hileena111 Member Posts: 7,099
    edited 30. Nov -1, 00:00
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    Hi May
    That's great news about John coming home but it must be scarey for you ...certainly to start with.
    Taking away his pint and his car :shock: :shock: :shock: horror of horrors!!!.
    What about the band....any chance that he might get back to that...I know not for a long time but just something to think about.
    Glad you have got some support......hopefully you will get more.
    I'll talk to you soon
    Love
    Hileena
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Oh May. I don't know what to say so shall say nowt. You are very much in my thoughts and will remain so. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • barbara12
    barbara12 Member Posts: 21,281
    edited 30. Nov -1, 00:00
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    May we are all to aware that you dont really like sympathy and in a way that is what keeps you going...you can only take so much, and there is help out there if you shout loud enough..there are quite a few charities do help in the home....so you ask at your GPs...and if I see you at the side of the motorway I will bring you home with me.... :)
    Take care lovey
    We are all here for you (((((()))))xx
    Love
    Barbara
  • villier
    villier Member Posts: 4,426
    edited 30. Nov -1, 00:00
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    May, sorry this is a bit late had computer problems. I am glad that mum and baby have finally got home.

    I am glad for you that you are getting John home and you are not having to come and go to hospital. I would stress that you need help at night as well for that matter in middle of day also, you are going through a terrible time at the moment so the powers that be should be able to fix it.

    You are always on my mind, such a strong, lovely person but it's good to know you have your buddies behind you.............bless you...............take care...............sending lots of love and (((()))) Marie xx
    Smile a while and while you smile
    smile another smile and soon there
    will be miles and miles of smiles
    just because you smiled I wish your
    day is full of Smiles
  • applerose
    applerose Member Posts: 3,621
    edited 30. Nov -1, 00:00
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    It's good news that John will be home on Monday but it will be hard for both of you for a while. Glad you've got some help but ask for more if you feel you might need it. As for not knowing if you want to laugh or cry, do whichever you feel. Maybe a bit of both. You will both feel as if you have lost something and it will take a little while to get used to it. But, at the same time, keep laughing at dropping the sugar. (((hugs)))
    Christine
  • mig
    mig Member Posts: 7,154
    edited 30. Nov -1, 00:00
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    Dear May,I hope you are as well as can be.My hubby had a stroke 10 years ago he can only see straight in front no side vision at all,he also has memory problems sometimes we have the same conversations several times in one day it's very irritating,he also has balance problems and what they call visual spacial problems which means things are not quite where he puts his hand to pick them up,he was lucky he didn't have speech trouble for long.My RA didn't happen till about four years ago so we got used to ( if that's doesn't sound silly) living with his limitations ,neither did I have all your health problems,now we muddle along as best as we can.Im thinking of you and your hubby and wishing you both well. Mig. (((())))
  • kellerman
    kellerman Member Posts: 741
    edited 30. Nov -1, 00:00
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    First of all many many thanks to you all for your selfless support. What a wonderful lot you are.
    I now have some more info from the doc who has been dealing with John.
    He was taken outside to see how he managed. He is walking with one person but towards the right so apparently he walked into the kerb all the time. He will be issued with a stick but this won't help the walking straight. He has to wait 4 months to have an eye test although the doc says it really won't make a deal of difference.
    He can't see the tv and isn't a reader so talking books are not an option at the moment.
    As for the band although he doesn't need music to play everything it takes a bit of pressure to blow a cornet so that too is a no no.
    So basically his life as he knew it is over.That I suppose is why I feel so down myself that life for both of us will change dramatically.
    I'm now the carer instead of the cared for.
    I have done a bit of googling and found a load of local help which is available including carrying a card in case something happens to one of us as it says who to contact in emergency.My own GP has also been very helpful showing me the right direction as this is all new to me.
    We may have to have our food shopping delivered as although I can push a trolley I can't lift bags from the car. My head is going round in circles thinking of all these things at the moment.
    Things could have been worse if someone hadn't been so quick to call an ambulance for him for which I am eternally grateful. It was a lady from our village PO. He had only gone for an evening newspaper!!!!!
    I do hope you all have a good a day as possible and I thank you all from the bottom of my heart. Love May xx
  • kentishlady
    kentishlady Member Posts: 809
    edited 30. Nov -1, 00:00
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    Dear May, it was lovely to hear from you and to know that your husband will be coming home tomorrow. However, I can well understand that you must be feeling apprehensive about it and the changes that have come into your lives. I do hope the care package in place will work well for you both. Am sure you will have good days and not so good, but will be thinking of you and sending lots of (((()))) your way. Take care. Beryl. xx
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    ((((())))) xxxxx DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • maria09
    maria09 Member Posts: 1,905
    edited 30. Nov -1, 00:00
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    Hi May
    It does seem daunting at first it will with time get easier
    As you know my dad is main carer for my mum who had her stroke 2years ago she is bed bound living downstairs and is hoisted out of bed as she can't walk at all
    We found the OT was amazing she got a ceiling hoist sorted and a wet room so mum can be wheeled in and showered
    I did spend 6hrs aday at my mums for the first year as it is really tough t the beginning my dad is a natural carer and does really well considering he's had a heart attack and suffers from asbestosis too
    He gets the same 2days a week for 4 hours as you, he also gets night care as my mum cannot be left on her own as its not safe and my dad can't care for her 24/7 she also has carers 4 times a day for 30mins at a time
    My dad does his shopping on line so,gets it delivered
    He also gets their medication delivered too
    He can get mum into respite care for 2weeks we call it my mums holiday
    When my mum first came home she was assessed overnight on 2 nights by the district nurse team to see if she warranted night care I wonder if they will do it for you too especially if John is restless at night because you need rest too May, have they taken into account your health issues too?
    There is carers resources out there to offer do advice also the stroke association too
    I hope all goes well for Monday
    Try and get as much rest as you can especially as you are suffering too
    Keep us up to date
    Best wishes
    Maria
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