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

    Hi Ems,

    I don't know what BEACOPP is sorry, but I hope it's good.

    just as Odin has said we're all behind you and giving you loads of support, well when I'm not hard at work that is!

    You take care and fingers crossed for everything.

    Tight Lines

    Tim xxx

  • FormerMember
    FormerMember

    Got to kick this into touch, so we do what it takes....no bravery involved. Not had BEACOPP so can't help you there. All I'll say is to speak up if there is anything you're not sure of, and don't think that any problem you encounter is too small to mention.

    Yes, you are going to need time off work (HURRAH!), but believe me it will involve lots of lying around in frilly undies a la Sunny, and doing very little. You will probably find it too much to read a book or follow a serial on TV, and a good day may be getting out of bed, having a bath, putting on day clothes, and maybe cooking a meal (with help!) If you can accept this you will find it much easier to cope.

    It may also be worthwhile getting in touch with MacMillan to see if you are entitled to Disability Living Allowance, especially as you are relying on others to take kids to school etc. They were brilliant sorting me out and I also qualified for a blue badge to help me get around when I was ill. Not a time to be proud!

    Keep meaning to say that I used Johnsons Baby Shampoo as my hair grew again....I know that you won't be needing that just yet, but something to bear in mind.

    An idea.......Have a pre-BEACOPP party for your girls and mum. Just have a fantastic day doing anything as long as its spent together......silly games, favourite DVD, pizza and lots of Chocolate!

    Love and hugs to all of you

    Mwah! Mwah! Mwah! Mwah! Mwah!  XXXXXXXXXXXX(((((((((())))))))))XXXXXXXXXXXXXXX

  • FormerMember
    FormerMember

    Just seen that you have to have injections in tummy. Do about an hour before bedtime. Make sure you pinch a roll of fat to jab into, and you may need Co-codamol for back pain.....did they mention that you may get back pain?

    xxxxx

  • FormerMember
    FormerMember

    Hi darling cariad ems... sorry I was a bit late catching on that you had said it here... it wasn't showing on the list anywhere and I couldn't find your update again and arrrggghhh! and I was looking for a new blog and you lot were all blabbing on without me... I think I lost my brain at the pool...

    anyway, here now.

    1. whoo hoo you don't have the 5 day thing....

    2. about bloody time you took some time off work my dear. Even I didn't manage to work for months and I am bleedin invincible!! Get in the no work zone... its annoying to start with and then you get in the rountine and then you don't want to go back to work ha ha.

    3. Hope I can see you at some point... and you are not too sick to meet in the hospital (ha ha that sounded daft too sick to be in a hospital) but it would be nice.. I am guessing I will have to go and see the consultant there at some point so might be able to see you too....

    4. Here's to kicking its arse! and if they think that will do it, then lets get kicking ... BOOT!!!

    5. it means you can keep up with us lot too if you're not working. :o)

    6. You are fab.

    that will do for now... catch up again later. xxx

    Oh excpet for bug hugs of course and snuggly cwtches cos you need them too and kig fugs Oh and trollbeads need to be bought in consolation.... to see you through this.

    Little My xxxxxxxxxxxxxx

    ps Odins can give cwtches cos I say so.

     

  • FormerMember
    FormerMember

    Ok, I can't reply to everyone in turn as I'm exhausted and had griping back ache all day!

    But thank you!! I hope you know how very much your support is just the pick-me-up I need. Good thing you don't need to actually pick me up mind you ...

    Anyway. Louise - I just remembered your VERY Useful Advice! Thank you!! :)) And I have had to do the jabs before and have a GREAT of fat so I'll be fine with that! ;) I will try to prepare myself for being a shuffling feeble frilly-knickered version of me :)

    Odin HAS to give cwtchs, it's the law, as a Celtic Viking!

    LM... YOU are the darling! :))

    Tim and Annie and Hils, and , oh ALL of you - THANK YOU!!!

    I love you lot, you're just too fab - and with you beside me, I know I'll get through all this xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx