a problem worse than arthritis??

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  • villier
    villier Member Posts: 4,426
    edited 30. Nov -1, 00:00
    Awww Sue what an attitude and what an amazing family, will certainly be in your pocket tomorrow, good luck......................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
  • Boomer13
    Boomer13 Member Posts: 1,931
    edited 30. Nov -1, 00:00
    Best wishes, Sue. Will be there for you tomorrow.
    ((()))
  • Megrose489
    Megrose489 Member Posts: 782
    edited 30. Nov -1, 00:00
    I'll be thinking about you tomorrow, Sue. ((()))

    Meg
  • phoenixoxo
    phoenixoxo Member Posts: 625
    edited 30. Nov -1, 00:00
    Good luck for tomorrow, Sue :)

    Best wishes,
    Phee
    PsA (psoriatic arthritis) and other things since 1990. Happy to help when I can :-)
  • kentishlady
    kentishlady Member Posts: 809
    edited 30. Nov -1, 00:00
    Hi Sue. How did you get on yesterday? Hope your appointment went well. Have been thinking of you. Take care of yourself. Beryl. (((())))
  • Starburst
    Starburst Member Posts: 2,546
    edited 30. Nov -1, 00:00
    I hope your appointment went well. Your family sound wonderful. I'm sure you'll be beautiful as a baldie. Hair is overrated. :wink: Hope you're ok xx
  • villier
    villier Member Posts: 4,426
    edited 30. Nov -1, 00:00
    Hope it went well yesterday Sue, I am 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
  • kevsue
    kevsue Member Posts: 45
    edited 30. Nov -1, 00:00
    Well, nearly a week later it's time for an update! I saw the consultant on Wednesday last week and rather than provide answers it seemed to raise more questions! He isn't convinced it's primary bone cancer and thinks it's possibly lymphoma. So the next step was a biopsy. Originally this was booked for 4th March. To say I fell into despair at having to wait that long was an understatement. However they phoned me Friday and said I could have it done the next day. So hubby and I travelled the 4 hours on the motorway on a Friday night to get to the national orthopaedic hospital at Stanmore. I had the biopsy under General anaesthetic at 9am and was ready to go home by one! So now it's a waiting game...again!! If it is lymphoma I'm hoping the treatment will be local but my thigh bone is very fragile so I will definitely need surgery on that. I just want some answers but am getting used to waiting ! I have actually started making a patchwork quilt, I will probably finish it before I go back to work, I suspect I will be off for a year. Thank you for all being with me, I will let you know the outcome of the biopsy

    Sue xx
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    I'm sorry that I haven't been keeping up with your on-going troubles but I have read back - yet again it's a case of hurry up and wait which is so frustrating. :( Like everyone else on your thread I too admire your attitude and yes, you're right, we don't know what we can do until we are put to the test. Keep fighting, girl, you'll get through. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • thistlegirl
    thistlegirl Member Posts: 229
    edited 30. Nov -1, 00:00
    You are doing great Sue.
    The waiting is the worst. When I was diagnosed with a Type of Lymphoma I instigated operation keep busy.
    I don't sew but I knit. I also did some fused glass work and stocked up on books and box sets. I had a task that could be picked up for 5 mins and put down-knitting. then I also had a task that could absorb my brain for hours when it couldn't switch off-fused glass and adapting knitting patterns.
    Depending on the state of my brain and body I had something to do.
    Writing on here was a godsend, I hope it is helping you too. I am month 7 of being off work and although I hate being off work I am not rushing back. Our bodies already cope with a lot the the Arthritis, and though I have fought and won against the Cancer for now I now need to get the Arthritis back under control and I need to give my body time to bet "fit"again.

    I hope you get your results soon and until then you rest up and enjoy whatever you find to keep occupied. It is horrible that this id happening to you but your body (and mind) is already trained to fight thanks to the Arthritis so you can do this.

    Jenny
  • phoenixoxo
    phoenixoxo Member Posts: 625
    edited 30. Nov -1, 00:00
    Hi Sue,

    Thanks for updating :)

    I've nothing to add to the wise words of DD and Jenny above, but I hope you've had a reasonable day and that the quilt is progressing well :)

    Best wishes,
    Phee
    PsA (psoriatic arthritis) and other things since 1990. Happy to help when I can :-)
  • kevsue
    kevsue Member Posts: 45
    edited 30. Nov -1, 00:00
    Hi all, eventually got my biopsy results today.....which were inconclusive!!! No cancer was identified by histopathology and no infection by microbiologist!! So it's off to the RNOH at stanmore again for another mri and a different ct scan. Then they may do a bone biopsy as it maybe that the biopsy just didn't pick up enough cancer/infection cells. They can't (or won't!) repair the thigh bone until they know what it is as obviously the treatment would be different. This is just dragging on forever!! The consultant (head of bone related orthopaedic problems in the south of England) has told me I'm a conundrum!! Possibly one in a million (why dont I win the lottery then???) Dare I hope I will have hair for my daughters wedding?? Bit down today as should be in Miami boarding a cruise ship for our long awaited (and saved for years for) holiday in the Caribbean. Now instead of having my 50th in San Juan Puerto Rico, I will be enjoying the delights of the RNOH!! Oh well, as.the saying goes "this time will pass" :) and we did get an insurance refund, might have to do a bit of online shopping........!!!
  • Boomer13
    Boomer13 Member Posts: 1,931
    edited 30. Nov -1, 00:00
    That does sound mysterious, Sue. Sorry you don't have answers yet, it's hard waiting and waiting, isn't it? How are you doing pain-wise?

    Take care,
    Anna
  • kevsue
    kevsue Member Posts: 45
    edited 30. Nov -1, 00:00
    Managing on arthritis painkillers! Naproxen during the day plus co-codamol then tramadol at night. The pain isn't too bad,most of it is from the torn cartilage in my knee which I hope they will repair at some stage!!
    X
  • stickywicket
    stickywicket Member Posts: 27,764
    edited 30. Nov -1, 00:00
    I honestly don't know whether I'd consider that good news or bad, Sue. It's always good to have a name but.... I just hope very much that the outcome is good. Maybe next year for the cruise, eh?
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • Starburst
    Starburst Member Posts: 2,546
    edited 30. Nov -1, 00:00
    ((((Sue)))) how frustrating for you to still not have answers. I can hear your frustration and I understand why but wish I could reach through the screen and take it away. It's a bitter pill to swallow about the cruise but as SW says, hopefully next year or even later in the year if health and weather permits..?

    I'm close to the RNOH and drive past it twice a day, so I'll send positive vibes your way. I really hope that they can give you answers and within that, answers that you want to hear.

    I really admire your attitude. I think we could all stand to take a leaf out of your book.

    "Tough times don't last, tough people do."

    Sending love and positive vibes xx
  • fortuna
    fortuna Member Posts: 149
    edited 30. Nov -1, 00:00
    Sue,
    I think you have the most amazing attitude having been through so many ups and downs. I have everything crossed for you for the best outcome.
    (((( )))) fortuna x
  • kevsue
    kevsue Member Posts: 45
    edited 30. Nov -1, 00:00
    So the latest scans show "Terry tumour" hasn't changed much in the last 6 weeks (got to be good news) but they still don't know.what caused him! So I'm off to Stanmore again this week for an open bone biopsy. Now as you have probably already read it's my 50th birthday on Wednesday....what's the betting on the op is on that day!!! I dare not postpone it if they do arrange it for Wednesday but I will make sure they bring me round from the anaesthetic by singing happy birthday!! One thing for certain I will never forget this :lol: birthday!!!
    Sue x
  • kentishlady
    kentishlady Member Posts: 809
    edited 30. Nov -1, 00:00
    Hello Sue. Do hope all goes well for you this week and hope the further investigation doesn't coincide with your birthday. Will be in your pocket if needed, whenever it is.

    Beryl
  • dibdab
    dibdab Member Posts: 1,498
    edited 30. Nov -1, 00:00
    Hope all goes well for the biopsy, time for answers to allow going forward now.

    Happy birthday in advance! :)

    I'll be thinking sending positive thoughts your way this week.

    Deb x
  • barbara12
    barbara12 Member Posts: 21,281
    edited 30. Nov -1, 00:00
    your a bit of a mystery Sue..but at least you are having all the test, good luck with the bone op..hope its not on your birthday..then you can at least relax for a while and enjoy...(((())) xx
    Love
    Barbara
  • mellivenelli
    mellivenelli Member Posts: 38
    edited 30. Nov -1, 00:00
    thinking of you and hoping that its not on your birthday :D
  • phoenixoxo
    phoenixoxo Member Posts: 625
    edited 30. Nov -1, 00:00
    Hi Sue,

    I'm with the others in hoping the biopsy isn't on your birthday! I'll be happy to perform pocket duties again :)

    Best wishes,
    Phee
    PsA (psoriatic arthritis) and other things since 1990. Happy to help when I can :-)
  • kevsue
    kevsue Member Posts: 45
    edited 30. Nov -1, 00:00
    Guess what everyone - the biopsy is on my birthday!! I have been out for a meal tonight as we have to leave for London tomorrow afternoon. My luck has to change though so I am hoping for a positive outcome!!
    You will all be in my pocket on Wednesday
    Sue x
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Well, it's an unusual way to 'celebrate', that's for sure. :( I hope that all goes well and you fit in a spot of retail therapy along the way. Please let us know, yes? I am thinking of you. ((( ))) DD
    Have you got the despatches? No, I always walk like this. Eddie Braben

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