Went in to fill in forms, and got Biopsy results...

1 minute read time.

Evening folks.

I don't know what the stats are for misdiagnosis, but apparently I DON'T have Hodgkins, I have NON Hodgkins (diffuse T cell blah blah).

So I will have 6 - 8 treatments with this new bag, which isn't strictly chemo, it an anti-body that begins with R. And 3 goes at IGEV, with next week being the 2nd. So I get 'R' this Monday, then the following Wed when I'm home (pop in to ward for morning) then again on 21st, then a week off for xmas ... also will have dates set soon for stem cell extraction.

I feel a bit gutted, as I was just getting my head around have HL! Which may sound stupid, but that's how it is ...

I didn't ask if much difference in prognosis, just went off to get the forms filled in ready for going in. I don't need to go in on Sunday night as I don't have a ''bulky mass'' on my neck this time, so can just turn up 9am on Monday.

I've told my mother what the schedule is but not about change in diagnosis coz I can't deal with her high level anxiety. I just had to chill her out anyway as my 13 yr old was trying to sneak off to stay with her girl friend at a boy's house (differing stories let them down) and I tried joking about teens and my mum turned it into a scary event all about boys and men planning something 'dreadful'. Fucks sake, teens do this type of thing, ie: sneaking, and pulling a fast one. Boys may indeed try it on, but the way she went on she made it sound like a paedophile ring!

Anyway. My 13 yr old has been delivered to her friend's house where her mum is keeping them in!

And I may open the vodka.

That is all xx

Anonymous
  • FormerMember
    FormerMember

    Bloody hell, my lovely fabby lady.... sending you ALL the hugs....

    Wow, that must be a bit of a headf***. Open the vodka and have one from me....cos you are not stupid for feeling that at all, we all would feel the same.

    I wouldn't bother telling your mum as she won't know the difference will she? Wait till you get your head round it and teenage silliness if enough agro for one night.

    Wish I could come over now and give you the biggest squeeziest hug. Here is a virtual one (((((((((ems)))))))))

    My mum had non Hodgkins. They cured her of it. Not sure that is any help to you, but I know since then they have improved treatments too.

    You are fab and gorgeous and lovely and I will come and see you and you will get used to it and new treatment schedule etc and you will get over it. Cos I say so.

    ALL the hugs to you

    Little My xxxxxxxxxxxxxxxxxxxxx

  • FormerMember
    FormerMember

    Oh poo to a misdiagnosis. I'm surprised it has taken so long to do the histology, as within a week of having my op they knew that it was Hodgkins...but then they had a lot of material to test. I should ask a few questions when you go back in, as there is a difference, and you need to be given the correct information. Take a good friend if possible so that they can remember what you don't and they might also know the 'right' questions to ask.

    Don't take Mum! Sounds like mine....and she wonders why I don't tell her when I have hospital appts! How is 17yr old dealing with things, as daughters can be very supportive and sensible.....better than mothers sometimes?

    Ooooh! Boys are only out to make prostitutes of every girl they meet. What an insult to your daughter. As long as she knows how to look after herself, and what to do if some fellow tries it on (a quick knee in the groin works for most persistent)

    Reminds me of a time when my dad tried to show me a judo throw, and instinct took over! He said that he didn't need to worry about me looking after myself. LOL

    Also had a FB conversation with my niece who is off to a party tonight. She got really bladdered recently, so I told her to be careful. She got me back by saying one word....Chester! The weekend before my transplant my sis, self and our hubbies went to Chester and stopped in a very nice hotel. I drank them all under the table!

    Take care Ems, and you hit the choc, and vodka, but don't stay by yourself if possible.

    Louise xxxxxxxxxxxxxx

  • FormerMember
    FormerMember

    Stoopid hospital. Stoopid doctors. Stoopid labs.

    GET IT RIGHT ALREADY.

    Now that they have got it right, they had better be fixing it. Or I shall come over there. Don't even ask me how.

    I am so glad I didn't have kids. They might've grown up like me. NIGHTMARE.

    Lots and lots and lots of wytchy and kallipygian hugses.

    xxxxxxx

  • FormerMember
    FormerMember

    I'll come and get you on my warp speed broomstick that's how Hilary...

    I like the sound of kallipygian hugses... wish I could spell it. but with the state of my bum, better not eh?

    wychy cwthes instead from me... (less washing needed after)

    xxx

     

     

  • FormerMember
    FormerMember

    Yes...it ALL helps, and I love you all very much for all your fab comments.

    I answered phone earlier and it was Lynne and she said 'how are you' and I just dissolved. Then Pam called over so that was good, and I swore a lot haha! I could have called you LM but I got all wobbly again and you trying to translate " andg thrfe yghy *sniff* blugdy grrf nmgh!!" may have proved tricky!

    I NEARLY gave in and had a cig but instead I'm in bed with a glass of Baileys.

    Yup. Lots of questions next week. And they will know, by subtle but clear means, that I am cross too.

    It kinda feels as though I have been diagnosed for first time again, does that make sense?! Each person goes through a process when diagnosed I guess. I went through mine, got head round it all, and got to a point where I realised that you can never second guess or plan much as things, such as treatment, may change. You don't really thing your type of cancer will change! HARUMPH and BASTARDS and BOLLOX and PISSFLAPS !!!!!! So there!

    5 months of being given the wrong kind of chemo is a bit of a piss-off. I may write down a list of questions and give them a copy.

    And I don't WANT to be angry. I don't think it's healthy to be angry for a LONG time, I know it's ok to be angry, and I will certainly be ;)