Can things really get any worse????

kellerman
kellerman Member Posts: 741
edited 23. May 2014, 13:34 in Living with Arthritis archive
Hope you are all having a sunny bank holiday. I know this is not on topic but I need to let off steam and you lot are my best bet.
Last Monday I went for my normal onco check up and well the big C is back with a vengence. Last years chemo did not work and now its spread so the only option is to try the drugs I had a bad reaction to but not with the hope of a cure just as pallative care.
I know I'm a tough old bird but this time I'm freaking out. If I can't tolerate these drugs....well theres nothing else. Also while I'm going through this treatment what do I do with John? I've tried to explain to him but he just doesn't get it. After all I've fought it 3 times before but somehow I have the feeling this isn't going to be so simple.
We have never had any contact with a social worker so now I am thinking its a good time to start...but where?I must get things sorted but my heads all over the place. I have paper work to catch up on today.
I'm still suffering all my other aches and pains mainly lower back and knees and of course the dreaded feet which have a mind of their own.
Sorry to bother you lovely people with my woes I know you all have problems of your own. Any advice about social services would be gratefully recieved...think my mind has gone blank.
Love and pain free day as possible. May xx
«13

Comments

  • mig
    mig Member Posts: 7,154
    edited 30. Nov -1, 00:00
    Oh May my love I want so much to help not with just words with practical things as well but that's not possible all I can do is send love and hugs,inadequate I know but they are sent with a true heart. Mig (((((())))))
  • barbara12
    barbara12 Member Posts: 21,281
    edited 30. Nov -1, 00:00
    Oh lovey..I am so glad you are talking us lots..we are always here for you ...I don't mind one bit listening if it helps just a little..
    You go to your GP and ask for a social workers ..they will have the relevant numbers for these service , I can only imagine your worry about John, and its no used saying don't... ..please keep in touch and let us know how you get on...(((((()))) xx
    Love
    Barbara
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Oh May. :cry: I am so sorry, like Mig I wish I could be of practical help but there is little that I can do. I can, however, be here (as are also your cyber friends) to listen and advise as best we can. I think your GP is your first port-of-call and also MacMillan, please contact them. ((( ))) xxx DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • villier
    villier Member Posts: 4,426
    edited 30. Nov -1, 00:00
    Oh May, like the rest Iwish i could help at least we can listen. GP and Macmillan as soon as you are able they should get you the help you need, keep talking if it helps sending some gentle (((()))) 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
  • bubbadog
    bubbadog Member Posts: 5,544
    edited 30. Nov -1, 00:00
    May I wish I was there with you so I could give you a real hug and not this cyber (()). My Aunt is battling Cancer and is having Chemo and I know what that can do to you after for a few days. I can only imagine what must going through your head at the moment. I agree with villier we are here for support but you need to see your G.P and Macmillan as soon as you can so you can get all the help you and your O.H will need to get through this tuff time. Thinking of you.
  • dibdab
    dibdab Member Posts: 1,498
    edited 30. Nov -1, 00:00
    May that's just awful news, words are so inadequate but I'm glad that you feel able to pour stuff out here- we can at least listen and hold you in our thoughts and prayers.

    I wonder whether your hospital could put you in touch with the appropriate social work department? That's the route we got support for dad and mum as his carer.

    Sending hugs ((((((((((( )))))))))))).

    Every blessing

    Deb xx
  • Numptydumpty
    Numptydumpty Member Posts: 6,417
    edited 30. Nov -1, 00:00
    Dear May, I think the others have said it all.
    Yes, I would suggest talking to your GP as your first step, they must know where to go/what to do next!
    It's little wonder your head's all over the place, who's wouldn't be?!
    I do hope you are able to get stuff sorted, and then concentrate on yourself.
    Good luck lovely lady, ((((()))))
    Numpty
  • Doubleouch
    Doubleouch Member Posts: 33
    edited 30. Nov -1, 00:00
    Dear May
    So sorry to hear your news
    Can only echo what others have said
    You are in my thought and keeping fingers crossed for you
    x
  • dachshund
    dachshund Member Posts: 9,183
    edited 30. Nov -1, 00:00
    Hello May
    you are a very brave lady and you must be worn out. you need help for you and your husband.
    please see your doctor he will know what to do.
    ((((((((may))))))) thinking of you.
    joan xx
    take care
    joan xx
  • nearlybionic
    nearlybionic Member Posts: 1,899
    edited 30. Nov -1, 00:00
    HI May
    I am so sorry to read your post. No wonder you are worried , for yourself and your treatment and about care for John. I wish I could offer `physical` help. I think that people have already given good advice re contacting your GP or MacMillan nurse for a referral to a social worker, but you can also self refer directly to your local Social Care department. But I hope whichever path you choose to get a social worker, that you get the support and help you both need quickly so you can concentrate on getting through your treatment.
    I am thinking of you xx
    NB
  • Starburst
    Starburst Member Posts: 2,546
    edited 30. Nov -1, 00:00
    Oh May, I am so sorry and sad to hear your news. Sending gentle hugs to you (((((May))))). Being just a few weeks away from being a qualified social worker, I can offer some help on the practical side of things. Most local authorities offer phone assessments for social services and you can self refer. Macmillan are fantastic and if you're not already, I would urge you to get in touch. That said, in terms of practical care and support in addition to equipment, your local council are also worth getting in touch with. You do need to hit some 'buzz words' and say certain things on the phone so I am more than happy with helping you in regards to that, so feel free to PM me if you have any trouble or for anything really.

    All the very best to you xx
  • hileena111
    hileena111 Member Posts: 7,099
    edited 30. Nov -1, 00:00
    Hi Petal
    I'm so sorry to hear this......I was so sure the chemo would work...I know the problems you had with the tablets :(
    I cant really help with the social worker I'm sorry. You've had a lot of good advice. The other thing I thought of is the Arthritis Care Helpline.....They will be open tomorrow. :roll:
    I know this is the big C but you have a lot of arthritis as well so they could probably signpost you in the right direction. :?
    You possibly still have my email address...feel free to email me or to pm me again. :)
    Once again I'm so sorry......but this is the place to let off steam and if you want to let off steam to me go ahead and pm/email.....I have done it enough with you :wink:
    Just sending you lots of {{{{{{{}}}}}}}......If there is anything I can do let me know....we were going to meet before all this started and I'm still here to come to you if necessary.
    I hope you cant get things sorted out with John as well.
    Take care pet
    Love
    Hileena
  • kellerman
    kellerman Member Posts: 741
    edited 30. Nov -1, 00:00
    Oh Thank you thank you all. You've no idea how much it means to me to be able to talk to my virtual friends as I'm finding it difficult to talk to family and friends face to face. My best friend I have had for many years as we went to school together and I haven't even told her.
    I think my family have the idea that I'm ok and it will all go away. Well...it might if I can tolerate these drugs..not a cure but kill it off for a few more years. But this is a big if however we'll give it a go.
    I will contact the GP tomorrow and see what she says. When you are like us and never had to deal with Social Services its a bit daunting not knowing where to turn.
    It really is so kind of you all to take the time to answer and I thank you again for all you hugs and kind thoughts.
    Please take care of yourselves and I'll keep you updated. Love May xx
  • barbara12
    barbara12 Member Posts: 21,281
    edited 30. Nov -1, 00:00
    May its good to know we are helping in a little way, Its always easier to talk to people that are not related or close friends..someone else mentioned Macmillan nurses..they were a godsend for me when my brothers was ill they took all the worry away of sorting the stuff you are talking about, his wife was very poorly they helped with everything...the best bit was a nurse coming in for his wife...sending you many positive hugs that the meds work for you,,,wish I could give them for real..((((())))xx
    Love
    Barbara
  • applerose
    applerose Member Posts: 3,621
    edited 30. Nov -1, 00:00
    May, I think the others have said everything. Come on here as much as you need to. We are here to listen and offer any help and advice we can. Your GP will get the ball rolling. Take as much help as you are offered for yourself and John. (((hugs)))
    Christine
  • Numptydumpty
    Numptydumpty Member Posts: 6,417
    edited 30. Nov -1, 00:00
    May, as difficult as it might be, I think it could be a good idea to talk to your friend. You need all the support you can get at the moment, and surely she'd want to give you that. I know how hard it can be to talk to those close to us about things that scare us, but it can help take some pressure off. A problem shared and all that.
    Of course that's just my opinion, I'm not in your situation and I may be reading this all wrong.
    We are here for you whenever you need us, and will help in any way we can.
    I'm sure we all wish we could do more for you.
    You are very much in my thoughts.
    Numpty
  • DebbieT
    DebbieT Member Posts: 1,033
    edited 30. Nov -1, 00:00
    Oh May, I'm so sad to read ure post, Uve been thru so much already, this all seems so unfair!! :(

    I think all of the advise is spot on. My Dad & Mum were put in touch with everyone thru the hospital but it was vastly different circumstances, I think ringing them directly or a GP referral sounds a much kinder & gentler introduction!!

    I think ure family need their blinkers removing so they can offer you the emotional & physical support you need. As pleased as I am that talking on here has helped, I do think that 'on hand' support from loved ones is a must!!
    Like Numpty has said, telling ure friend, tho hard, will probably be the best place to start huni.
    We'll all be there, in ure pockets!!

    Masses of ((((((Hugs)))))) Take care.

    Xxx xxX
    Healing Hugs
    Debbie.x
  • fortuna
    fortuna Member Posts: 149
    edited 30. Nov -1, 00:00
    I echo everyone else's comments and pray that you get some really useful help from Social Services.
    Fortuna x
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello May, I am thinking of you and John very much. ((((( ))))) x DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • hileena111
    hileena111 Member Posts: 7,099
    edited 30. Nov -1, 00:00
    Morning Pet,
    Sending you more (((((())))))

    Love
    Hileena :)
  • dachshund
    dachshund Member Posts: 9,183
    edited 30. Nov -1, 00:00
    Hello May
    i hope you have found some one who can help you both.
    i will be thinking about you.
    take care ((((((((may and john))))))))
    joan xx
    take care
    joan xx
  • mig
    mig Member Posts: 7,154
    edited 30. Nov -1, 00:00
    Thinking of you.(((((()))))) Mig
  • barbara12
    barbara12 Member Posts: 21,281
    edited 30. Nov -1, 00:00
    May I know I have already posted but just to say we are always here,I do hope you get all the help you need.... (((()))) xx
    Love
    Barbara
  • villier
    villier Member Posts: 4,426
    edited 30. Nov -1, 00:00
    Thinking of you both, hope you have managed to get contacts for help (((())))...........................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
    Just popping in to say I'm thinking of you. (((hugs)))
    Christine

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