Could I really be this unlucky?

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  • phoenixoxo
    phoenixoxo Member Posts: 625
    edited 30. Nov -1, 00:00
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    Hi again, thistlegirl,

    I'm so glad you've got a good doctor. She seems prepared to help you through this, and I know how important it is to feel that you've someone on your side. And you're both right, of course, to stay positive, though it's only natural to feel concerned too.

    I understand from my rheumatologist that there is indeed some thought on a link between auto-immune arthritis and lymphoma, and also between medication for auto-immune arthritis and lymphoma. I asked him about the latest research on this following an introduction to my most recent anti-TNF treatment by the specialist nurse: 'Now, I have to warn you, there is an increased risk of lymphoma, but, well, there's an increased risk for you anyway.'

    As for telling your family, I think you'll know when the time is right. I'll be another in your pocket come Monday :)

    Best wishes,
    Phee
    PsA (psoriatic arthritis) and other things since 1990. Happy to help when I can :-)
  • thistlegirl
    thistlegirl Member Posts: 229
    edited 30. Nov -1, 00:00
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    I need to sew some more pockets on my jeans for Monday. Thank you everybody. xx

    So another doctor called me tonight. I was referred to him when the lumps first appeared and he was the one who did the biopsy. He just got the results himself and wanted to see how I was doing but he didn't know if I had been told. It went a bit like this.
    Me "yes I talked to my doc about the biopsy results"
    Doc ".........so....what did she tell you...?"

    My rhumy doc conversation went the same way. I guess they didn't want to put their foot in it if I didn't already know.

    Yet again he was nice and caring, he said he was very surprised by the results but neither confirmed or denied and hoped I got some news on Monday. He was surprised that I am only getting a head and neck CT as the lump on my stomach is where the biopsy came from I will try to remember to ask the doc on monday about it I am going to write stuff down over the weekend to ask him.

    Another day another doctor but no result yet, but it is nice that the doctors have called and showed they care.

    I am doing a fused glass course this weekend, I booked it before things got tough but I am thankful for it as it will keep me busy. Although after a week of keeping busy all I want to do is sleep.

    One more day at work then it is the weekend. Today was tough at work, getting hard to act as if all is well but it is preferable to the conversations that I would have to have if I was honest with them. You guys are here when I need you and when I am ready to talk. That is what I need at the moment.

    Thanks again

    Thistle
  • kentishlady
    kentishlady Member Posts: 809
    edited 30. Nov -1, 00:00
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    Hi ThIstle. Am glad to know that the docs are being caring to you as that will help you. I do hope you enjoy your course tomorrow, it sounds great. I love most types of crafts but have not tried anything like that. It's a good idea to write your questions down before appointments, I usually do (if I remember to take the list with me!).

    We will all be with you, even if we are jammed in your pockets like sardines. Take care of yourself. Beryl. xx
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    It sounds to me as if you are in very good hands doc-wise, I hope you enjoy your week-end (the course sounds interesting) and I will be thinking of you over the next few days and weeks. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Toots
    Toots Member Posts: 483
    edited 30. Nov -1, 00:00
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    Try to have a good weekend Thistle, will be thinking of you Monday x
    Toots x
  • phoenixoxo
    phoenixoxo Member Posts: 625
    edited 30. Nov -1, 00:00
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    Hi thistlegirl,

    For what it's worth, I think you're doing brilliantly. I hope you've had a reasonable day at work and I trust you'll enjoy the fused glass course :)

    Best wishes,
    Phee
    PsA (psoriatic arthritis) and other things since 1990. Happy to help when I can :-)
  • stickywicket
    stickywicket Member Posts: 27,719
    edited 30. Nov -1, 00:00
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    I, too, think you're coping extremely well and shall be there for you on Monday.

    My experience of docs is that, if you ask questions they will answer them but if you don't ask they will presume you don't want to know. I always want to know so I do ask.

    I hope you thoroughly enjoy your weekend.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • destiny0321
    destiny0321 Member Posts: 88
    edited 30. Nov -1, 00:00
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    hi thistle new on here & just read about you i hope &pray that all is going well. & that you enjoyed the glass course i am a crafty person as well cross stitching ect. again i pray all will be ok will keep watching destiny
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Hello thistle, I hope the week-end went well and gave you a chance to 'get away' from it all for at least a few hours. 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
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    I have cancer. I have a rare form of cancer- subcutaneous panniculitis - like T cell lymphoma. Lymphoma but not in the Lymph nodes.
    The first case they have seen in 12 years, nobody is surprised it is rare, my body never goes for the boring option.
    I managed to tell my family face to face. I asked the doc to write the info down so was able to give my dad the paper when I couldn't say it. It feels good to tell them.
    My family is great- still in shock but they can deal with it, we are all very close and they have been great throughout my Arthritis life and I know they will be there now.


    My treatment depends on when they find in CT scans and PET tests to see if there are anymore lumps then the 2 that I have found. They also took a dozen tubes of blood from me.
    I have an appointment in 3 weeks when they should have all the results and he wants to start treatment within 4 weeks from now.

    10 year survival rate ranges from 90%-60% depending on what they find and treatment needed.
    Treatment can be lots of steroids or chemotherapy depending what they find.

    Going to see my GP tomorrow-she is in a meeting all day but is going to see me before- she is amazing.

    I am not pleased with the result but I am pleased that it has finally been diagnosed and is no longer hanging over my head.

    Thanks for filling my pockets, I think I will keep you all there for a while. It is therapy to write it down and your comments mean a lot.

    Oh and it is thought to be linked to people with connective tissue disorders- If the dics told you straight off what is linked with Arthur it would be a much different conversation

    Thistle
  • stickywicket
    stickywicket Member Posts: 27,719
    edited 30. Nov -1, 00:00
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    This is not what you wanted to hear, thistlegirl, but, as you so rightly point out, you now know the score so can start to deal with things. Even better, the docs are on the ball and the wheels are already in motion.

    Well done on telling your family. I remember you were concerned about this but now it's all out in the open and you will have their support which is good.

    Of course we are here to help in any way we can.

    I think you've dealt with all this brilliantly so far.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • kentishlady
    kentishlady Member Posts: 809
    edited 30. Nov -1, 00:00
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    Oh Thistle, I have just seen your post and am so, so sorry to hear your news. Am so pleased you have found the courage to tell your family and I am sure you will all get through this together. I will be in your pocket the whole time (you won't be able to get rid of me!) and I am sure the others will all be on permanent pocket duties too.

    Am pleased to know that your dr is being so good and that your appointments are soon. The sooner they can start the treatment the better it will be for you.

    My thoughts and prayers are with you. Take care of yourself. Please keep us updatedwith your progress and remember we are all here to support you.

    Beryl (((()))) xx
  • CathrynJane
    CathrynJane Member Posts: 7
    edited 30. Nov -1, 00:00
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    Dear Thistle. I'm new here, but I feel I know you so well. I know everyone will be here for you. all the very best to you.

    Cathy.
  • Megrose489
    Megrose489 Member Posts: 776
    edited 30. Nov -1, 00:00
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    Very sorry to hear your news, Thistlegirl. Stay positive and you know we're all behind you and thinking about you.

    Well done on telling your family. I'm sure they will be a huge support to you.

    Be kind to yourself and take care.

    Meg (now on permanent pocket duty) :)
  • kentishlady
    kentishlady Member Posts: 809
    edited 30. Nov -1, 00:00
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    Hello Thistle. Just dropping by to see how you are today and to let you know I am thinking of you. Sending a few ((((())))) to help you along just a little. Be kind to yourself and take care. Beryl. xx
  • Toots
    Toots Member Posts: 483
    edited 30. Nov -1, 00:00
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    I'm so sorry to hear your news Thistle, sending gentle hugs your way. I'm really glad you've managed to talk to your family and to hear that they will be supportive. Your doc sounds brilliant and it's good to know that your treatment will start relatively quickly. Please stay in touch xxx
    Toots x
  • phoenixoxo
    phoenixoxo Member Posts: 625
    edited 30. Nov -1, 00:00
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    Hi Thistle,

    My thoughts are with you. Well done for telling your family, especially for thinking of asking the doc to write down the info for you.

    Well done too for just getting through the day yesterday, getting all the info and having all those blood tests. I've a feeling you’ll have very full pockets for the treatment that follows :)

    Best wishes,
    Phee
    PsA (psoriatic arthritis) and other things since 1990. Happy to help when I can :-)
  • Starburst
    Starburst Member Posts: 2,546
    edited 30. Nov -1, 00:00
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    ((((((Thistle)))))) You don't even need to ask; just let us know the time and place and we promise to fill your pockets. Thinking of you. x
  • stickywicket
    stickywicket Member Posts: 27,719
    edited 30. Nov -1, 00:00
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    Hello again. I just wanted to say I'm thinking of you.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • kentishlady
    kentishlady Member Posts: 809
    edited 30. Nov -1, 00:00
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    Am thinking of you too, Thistle. (((()))) Beryl. xx
  • thistlegirl
    thistlegirl Member Posts: 229
    edited 30. Nov -1, 00:00
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    hi everyone, my head is mush and sleep is evasive. I am a high school teacher in Scotland. the gp signed me off work til after my first lot of scans on Monday so I can get my head around this. I left a message at work saying I would be off but not why and now my head of dept and friend is calling to see whats up. I can't think or talk about it without tears at the moment so avoiding him at the mo.
    my dad thinks work would keep me busy, he doesn't get that you don't get a minute to yourself as a teacher and until I control my emotions better I cant be there. my work is great, kids and teachers but dealing with them is too much at the moment.
    work knows if I am off it is serious, when I was seizing up 2 years ago I dragged myself in on crutches and 3 types of pain killers, I only stopped when I was hospitalised, only realising then that i was stupid. I am not doing that this time my body needs to be strong to fight this thing. although the kids did get away with more having a doped out teacher-probably shouldn't have driven though!
    The timing really sucks, it is the first year of new courses and exams here and nobody is ready, my dept is only me and the boss and so I have been doing the planning for 2 different courses. my boss said a couple of weeks ago that he would be in trouble ifni went off as I had done the planning. I have linked with a couple of neighbouring schools and we have been working together so I hope they will help out.

    My name is Jenny by the way, you are helping me so much it seems silly that you don't know my name.
  • frogmorton
    frogmorton Member Posts: 29,485
    edited 30. Nov -1, 00:00
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    Gosh Jenny

    I am so sorry I missed this.

    I am so glad you have managed to tell your family and that they have been as fantastic as you probably hoped for.

    I can totally understand why you can't be at work just now, your Dad probably wants things to be as 'normal' as possible for you. I agree though it's not good to get upset in front of the kids, for them or you.

    Work will manage without you, but it sounds to me as though you are highly valued there which is lovely :)

    You take care - us lot are here for you

    Love

    Toni xxx
  • kentishlady
    kentishlady Member Posts: 809
    edited 30. Nov -1, 00:00
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    Hi Jenny. Can understand why you are concerned about work, but you really MUST think of yourself first. Wait until you feel ready to go back to work. Your Dad means well and yes, work can sometimes take your mind off problems, but you don't want to overtire yourself as you need to be as strong as possible before starting your treatment. Teaching is tiring (as I am always hearing from one of my friends).
    Give yourself as much time as you need. I am sure everyone at your school will give you all the support they can, but you will need to be brave and tell them, as you did your family. The more people you have supporting you, the better it will be for you.

    Take care of yourself. A few more (((()))) to help you along. Beryl. xx
  • 19smp59
    19smp59 Member Posts: 105
    edited 30. Nov -1, 00:00
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    Hi Jenny

    Just caught up on this thread and wanted to say how dreadfully sorry I am to hear your news. You are totally right, going into work at the moment, isn't a good idea, like you say you need to keep strong. The school will manage as well, so don't be worrying about that, you just need to concentrate on yourself.

    I am really in awe at how brave you are and how well you seem to be dealing with this, but then it seems like you have been dealing with serious illness all your life.

    I'm sure you will have lots of ups and downs over the next few months but I really hope you manage to keep your positive spirit, if not all but most of the time.

    I don't know you but I really do wish you all the very best, let us know how you are getting on, I'm sure lots of people on here would love to know how you are doing.

    Good luck, very, very best wishes, Suzanne x
  • phoenixoxo
    phoenixoxo Member Posts: 625
    edited 30. Nov -1, 00:00
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    Hi Jenny,

    I can't add much to the wise words above, just letting you know that I'm thinking of you. From experience I know it's difficult to wind down from work, especially when co-workers aren't completely aware of the situation. But telling your family was a huge step and I'm sure you'll manage to get through this too :)

    Best wishes,
    Phee
    PsA (psoriatic arthritis) and other things since 1990. Happy to help when I can :-)
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