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'm glad Deri's birthday went swingingly and that you had enough spoons in  reserve to enjoy it too!

    Yep, having an illness like cancer is lonely, especially if you live on your own. My real friends have been great and have helped out with all the jobs that I've been committed to and even taking the jobs over to save me. They were there when I was low and I could phone them and chat and joke at any time, but few phoned me.

    My BIL, however was a superstar. Even though his wife had breast cancer and was still on tamoxifen and he lived some 70 miles away, I was invited over most weekends and had a room allocated to me for the duration of my treatment. And if I wasn't able to drive, he offered to come and fetch me.

    It wasn't until towards the end of my treatment that I discovered macland and all the wonderful people here. You have been wonderful caring people and I thank you all for just being there.

    Good luck for Bronwen's birthday, I hope you get time off for good behaviour so that you can have a fab time with Bronwen as well.

    Best welsh cwtches,

    Colin xxx

    PS. Cariad, of course you're an inspiration - you've inspired me!

  • FormerMember
    FormerMember

    Ooooooh ello my lovely cariad Ems. Your bring her own sausages friend here :o)

    I am also an inspiration and brave and blah blah shite like that... ha ha ha maybe that's why we get on eh?

    I think you are fab and I think you looked fab with your purple turban and no hair and I thought you were beautiful. You are doubly beautiful on the inside too...

    Your family and your P and us lot doing give a flying fuck whether you are bald or how many chins you have got. We love you and think you are beautiful. So there. And other wise scream cancer why not? Show people you can be bald and have cancer and eat and walk and talk and laugh and be a good girl ha ha that is as classic as my well done you.

    Cancer is shit. We know that and its unfair and all that. Once we get over that one, your lovely daughters will learn courage and strength from this and they will love their birthdays however they are celebrated or not and they will learn so much to stand them in good stead for their own bumpy roads in life that you are helping them. (I was a teenager with a dead dad and a mum with cancer... and I'm ok eh? Might be a bit bonkers, but loony isn't too bad is it? ) I have the courage to face anything in life including my own cancer cos my mum gave me that... so don't worry about your kids.. you are setting them up nicely for their lives.

    5 days. If I can stay in hospital for 7 days, then you can do the 5. (cos I am a big hospital wimp and no one could get in to see me and it was my birthday) I will come and visit you and your girls will be fine with eachother and your mum and if it takes 5 days to kick cancer's arse big time, then bring it on and I will come and see you and bring you tomatoes ha ha (or 2lbs of grapes maybe?) And you will come and visit me when i have to go in again.. You do it, I do it. ok? deal?

    You hang on in there and shout and scream all you like and I am always always here to take that step over to your bumpy road and walk it with you so you are never alone, ever my dear cariad ems

    bug hugs and cwtches to you

    Little Myxxx

     

  • FormerMember
    FormerMember

    *quick hug* as very tired and I always want to write long responses to your posts and don't think I've ever managed it yet.

    That spoons link is, indeed, excellent - glad it was useful!

    xxx

  • FormerMember
    FormerMember

    Well, you have all made me feel gooey and warm and LM made me cry too!

    I can't stay long either Hils, because I am exhausted and cold and wanna curl up with a blankey.

    I will be going into hospital tomorrow but not for chemo, for Big talks about Plan B, so I'll fill you all in then..................................

    Thank you guys n gals xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

  • FormerMember
    FormerMember

    Hi Ems,

    All appendages crossed for tomorrow

    love Colin xxxx