High days and low days

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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 over 4 years ago in reply to ruthjp

Thank you for replying. First of all I’m sorry that you have lost your mother. I’m glad you were together when she passed away. Your being there must have been a comfort.

My mum would agree about not being able to do the things they used to.But bear with me. Every now and then, an Parkinson’s sufferer will go through their delusional stage where they believe people are trying* to hurt them. My mum most of the time is an wonderful sweet and popular old lady. It depends on how bad her chest infections are, she is getting them all the time. She has difficulty swallowing her drink, food and her own saliva. Problem is, if any of these reaches her lungs, and they do. Then she keeps getting pueomonia. That is the biggest cause of death for Parkinson’s sufferers. She always comes out of her delusional stage, but she keeps getting Pueomonia. Please forgive my misspellings. All I want is for her to be comfortable. Not suffering.

FormerMember over 4 years ago in reply to tvman

Thank you Tvman for sharing your life story of your wife’s aunts. They still in my eyes sounds like wonderful women and they have had good innings. So sad that when the majority of us get old, we don’t retain the mind of all we have witnessed, experienced, and the wisdom. Who knows. Maybe they are still in that wonderful world in their mind. Do you believe we all meet our loved ones that have passed on? The Irish have such a wealth of beliefs, they are the best orally telling the old stories that pass down generation by generation. Even the song Danny Boy, the Londonderry song was old before someone decided to write it down. My mother is superstitious about that song. She and two friends were driving back from RAF Alconbury, singing that song when they ended up in a car crash. My mum and the other passager nearly died. She cannot bear to hear that song and one day she heard me singing the line...the pipes the pipes are calling when she looked at me ashen. Her face was white. I know of all the tales of Ireland. My favourite one is the tragedy of the children of lir. Lot of the books you see in the back ground my my photo have a lot of Irish legends in them. The most horrible one was the husband who thought his wife was an changeling. Oh I could go on about my love of Ireland.