Birthdays and 'spoons' and questions

4 minute read time.

Deri had a BRILLIANT birthday yesterday (Sunday) ! :)) Cake and playbarns and presents, and just much fabness. Some great pics LOL! She loved her day and her fun and her gifts :))

Today, a friend who lives in America, asked me about whether or not illness can cause isolation at all, in any way... she asked this after I sent her that spoons link that Hils posted - see how useful it was Hils? :)


Hmmm....... isolation... on some levels, yes, absolutely. Because friends/family/partners etc can sympathise, and try to help, and be loving, and get upset for you, or feel helpless and try to be useful, but if they haven't got, or had, what you have, then none of them can ''be'' right IN there with you, they can't take it away for you, nobody can stop the occasional and out-of-the-blue grip of panic, or brief moments of sadness, or surges of anger at 'why me' that can appear ... I have now got my head around the fact that 3 cycles of chemo didn't magically make my lumps disappear, that it's likely to need 6 cycles. The other 5 day option they mentioned still freaks me out.

And I noticed this weekend, that the right hand side of my neck is firm and slightly swollen again... is that due to me drinking alcohol last Sat and this Sat night? Or is the stubborn lump playing up? Or is it just part of the process? Will I be ok in time for Xmas? Will I be weak and feeble over the holidays? If chemo continues through Dec, I am due the day before Bronwen's birthday - how crap is that?? I may ask if we can tweak the dates! How can I have no spoons available on the day of my daughters birthday? Fuck off cancer you bastard!

And people will say, oh. she'll understand, and at least you'll be there even if you're in bed, and she won't mind, and we'll take her out for you etc... but, part of her WILL mind, because her mum will be poorly and I WILL mind because how fucking unfair!


And I have been positive, and thought good thoughts, and laughed at it, and stopped smoking and not had even a glass of wine since August, and eaten broccoli and tomatoes til they come out of my ears, and given up sugar too!


And having found the Macland has been fabulous, coz everyone here is living what I'm living, and we make silly jokes ehich others may wince or frown at, and we KNOW what we all mean when we describe 'stuff', and we all cheer each other up, and well, YOU all know how bloody useful it all is!! And I'm lucky coz my 'real world' friends have ALL been amazing too! Nobody has been awkward or weird, they have all just rallied around and been SO supportive. I have been flooded with offers of support, help, assistance, shopping, childcare, food, hypnotherapy even!

And you lovely lot, well, I am LUCKY to know such top notch folk like YOU!! :)))  AND, another weird but very nice side-effect is that I actually met one of my Macland friends in person, (added bonus she brings her own sausages) and will do so again when we can both manage to be awake/mobile on the same day LOL!


It is the most surreal experience of my life. I am blessed to have you all. I am lucky that the cancer I am dealing with is not terminal, can be treated, that I have the personality I have too I guess, I am sure some others cope worse or better, but I'm doing ok so far!
But, I'm not brave. People have said that I am, but, I have no choice. I HAVE to get on with it! So I am. Some people have said I'm an inspiration. That made me cry. And I didn't know what to do with that!  You don't know how much you can deal with until you're dealt your hand, you think??
I want to be well, I want to well soon, and I know I WILL be, but I can be impatient!! ;)


You know what annoyed me the other night? A chap I know from Glanusk, very nice in lots of ways, asked me how I was. I said I was doing well thanks. ''Good girl, that's the way" Good girl??!! I know, I know, he meant well, but really!?!
And, I'm bald, it doesn't suit me, I'm not cute or sexy or quirky being bald! I have a double chin, I'm curvy! And, my neck is still misshapen from the lymphoma. I don't hide, I don't usually feel self conscious, and I am sure most people don't give a sh*t LOL! But it screams ''cancer!'' , you can't pretend like you can with fibromyalgia :)

Did that answer my friend's questions?? :) I don't know, maybe it did, but it was a good opportunity to have a rant ;))

Oh, one more thing ....................... THANK YOU!!  Because, all my friends, old and new, near and far, are helping me get through all this so much more easily, and I will always be immensely grateful for that.

(and if you got this far, well done for not nodding off!!)

Xxxxxxxxxxxxxxxxxxxxx

Anonymous
  • FormerMember
    FormerMember

    Thanks Odin ;) xxx

    ~~~~~~~~~~~~~~~~~~~~

    OH. There we are then... it's onto BEACOPP for me! They have very kindly said that I don't have to go in for 5 days , if I behave myself :))

    So, either this Monday, or following Monday, depending on when I get my new biopsy (to check it is still Hodgkins and hasn't mutated), I begin the 21 days cycle. have drugs to take at home from day 1, but also come in as an out patient for an infusion (some will be long days) days 1/2/3, then take more pills at home, then back in day 8, then more pills at home, then a week off anything, then start again. At least 2 cycles.

    So NO work at ALL fo rme for at least 2 months, maybe 3!?! Wow. I will be highly suseptable to infection so no hanging round in centres like mine, or schools, or any large public gathering etc.

    Much mooching about on sofas and beds then, feeling more bleugh, but kicking Lumpy's arse big time one hopes :)

     

  • FormerMember
    FormerMember

    It sounds major, but if they think it'll work then hell, yeah.

    I'm doing rather more lounging myself than I really like. Meh. But, again, means to an end.

    *hugs*

    xxx

  • FormerMember
    FormerMember

    Hi Cariad

    If that's what you gotta do then that's what you've gotta do.  And although this is huge you can and you know it.

    Stay away from  crowdy places, forget out worky place, mooch a lot but please try not to feel too bleugh!  And I sincerely hope that Lump's arse gets kicked into oblivion.

    Much love,

    Nin xxxx

  • FormerMember
    FormerMember

    Hi Cariad,

    No work for 2-3 months? Jammy! You'll have loads of time to spend on your kids, your crafts and yourself - not exactly for the best of reasons but hey, nothing's perfect. Thinking of you, courage mon brave, etc.

    Love & hugs,

    Annie  xxx

  • FormerMember
    FormerMember

    Hi Cariad,

    A girls gotta do what a girls  gotta do and at least there's the bonus of no work and wow! What a cancer card.

    We're with you all the way so whilst lounging around like LM's big sis keep in touch and you can't be bleugh on here!

    Love and cwtches,

    Odin xxx

    Can a Norse God give cwtches?