High days and low days

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Hi

Just putting this out there don't know what order this post will come out in as I am just typing as I think of things so apologies in advance if it is bit mumbled, grammatically incorrect or full of typos.

I had my ONC appointment today - last scan was in OCTOBER yes OCTOBER. although I knew from my BCN that the cancer was stable, this was the first chance to speak to my ONC. I should be happy that I am stable mabel but it just serves as a reminder. I am on my week break from oral chemo so have worked out that I always feel low on my week break, does anyone else have these symptoms?

I am being sent for a further bone and CT scan in Jan so waiting for appointment.  ONC seem pleased at the moment so why am I not?  I think it just serves as a reminder whenever I have to see the ONC of my condition.

I have been on Leterzole since April and over the last few day my leg and particularly my calves are aching.  Calves cramp up.  I have not really had many side effect of Leterzole so far but think this maybe the start.  I know there are people who cannot tolerate this drug so am grateful for this and that the palbocicib appear to have shrunk the tumour.

Enough Maudling now I have things to be thankful for I have just returned from a fantastic 2week holiday - absolutely NO pain the sun and vitamin D did do wonders whilst I was away and I was spoilt rotten.

To completely change the subject now, my partner and I of 15 years are most likely getting married next year - if my divorce comes through (split from ex 19 years ago - long boring story) I want a pyjama wedding. EVERYONE wears PJs even me.  I will have a fancy designer pair.  I just want guests to be comfortable and will be a small registry office and celebration with about 30 people. Is that a stupid idea?

sorry for the  ramble. I hope all is going as good as it can be for my cyber friends  which means YOU

much  love

Iamlyn   

  • FormerMember
    FormerMember in reply to Gragon

    The famous Mexican artist Frida Kahlo attended her first exhibition by being carried in her own bed to it. Still best to think of it as one big slumber party. I wouldn’t even want to attempt sliding down the stairs on a mattress. I have years ago, slid down one or two fancy banister tails.

    One thing...once  the wedding celebrations are over, they haven’t got to get ready for bed!

  • FormerMember
    FormerMember in reply to FormerMember

    Have you looked at Liberty’s of London for pyjamas, ? They do the most beautiful women’s silk pjs imaginable 

    xx

  • Daloni,

    Thank you so much for the recommendation.  I will look in the new year, I am kind of hoping my divorce will be sorted by Feb so will wait a bit before shopping (Ex is refusing to sign papers, or give me an address, not because he want to still be with me because he is a A**e, I have not spoken to him in 18 years !!).

    Anyway enough about me, Daloni I have been following your story with interest and what an amazing person you are, always supporting others and taking time to respond.  I truly hope with all my heart that this trial is going to work for you and will be supporting you all the way.

    Lyn

  • Gragon,

    How funny will steer clear of the mattress.  A pillow fight may be fun though (joking of course).

    Lyn x

  • Also

    I meant to say that goes for each and everyone of you - we are all chugging along preparing for battle and I have said before each of you inspire me to keep moving and keep hoping.  What a lovely group you all are. 

    xx

  • Daloni

    I have just had a browse at Liberty's of London.  OMG they have some beautiful PJ's.  What have you done to me.

    xx

  • FormerMember
    FormerMember in reply to IamLyn

    I have a idea! When Lamlyn gets married, why don’t we wear our pyjamas too? Not if we are at work and such, but for those of us that are home, and we are online here? Why not!

  • JackD

    How funny, I will of course keep you all posted with the progress.  Courts can be very slow and expensive (a licence to print money I think).  But hey that's the chance I took when I married 29 years ago so guess this is what the 'for worse' bit it of those pesky vows.

    x

  • FormerMember
    FormerMember in reply to IamLyn

    Hi

    I am sorry to hear you’re caught up in a divorce. I mean really? Who stands to gain from this? I hope you can get it through without recourse to lawyers. How long ago did you file? If it’s more than a year you can simply divorce him anyway. 

    Meanwhile dream of those lovely silk pjs. Cheaper than a wedding dress! 

    Thank you for your kind words. I think the best way through our own hard times is to reach out and help others. People wiser than me have said this and I have found it to be true. 

    Lots of love xxx

  • Hi Daloni,

    I know right who stands to gain? In my exes warped mind, he does as he is not giving me what I want.

    We have no children together, no property and no financial ties.  I did start the process a long time ago when we were 5 years separated and got the same response.  At that time you had to go through a solicitor and I did not qualify for Legal Aid and the bills were just stupid. So I gave up and just got on with my life.

    The law has changed recently to a do it yourself, in theory it should only take a few months with both parties consent. Of course I don't have his because he is just refusing to sign papers. I have tried to speak with his mother, who incidentally agrees with me it should be sorted by now but he does not want her to give me his address so her hands are also tied.

    He (ex) seems to think it just can be done automatically without his consent or signature. I have my own theory, he is no longer in this country and my belief is he got remarried so does not want to rock any boat. 

    I started the do it yourself process just after diagnosis April 19. I want to be rid of the past and love and protect my wonderful, supportive loving partner. He deserves this and is my best friend.

    So we are now checking progress daily and as soon as divorce is done, I will be donning my Pjs with pride.

    Lyn x