Cancer, brain fog & disbelief

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Hi Im Tina,

I was found to have peritoneal cancer in January of this year.  Had 3 & a half rounds of chemo, then a sizeable de bulking operation ( woke up with something akin to a full length zip gracing my abdomen) .. Followed by 3 more rounds of chemo.  
Im now on a 3 weekly course of Avastin for the next year or so. 
Ended up in hospital for 11 days a couple of weeks back with acute proctal colitis plus a small anal fistula..  Caused ‘probably’ by chemo..  After discharge I had a meeting with my consultant who informed me that it could have been caused by c-diff ?  This shocked me as I’d at no time been told that I had c-diff, no barrier nursing took place & id only had one instance of diarrhoea..  but hey ho apparently they found the c-diff gene.  Since then I’ve been downing Yacult like a thing possessed, changed my diet to low /soluble roughage and watching everything bowel related like a hawk.. 

So…. How’s everyone’s brain fog doing?  I’m finding it unbelievably annoying & so frustrating..  I’ve changed from being ‘the organiser’ to a pathetic numpty who’s scared of filling in simple forms.  The thought of starting the process of sorting mums estate terrifies me , mum passed away this April. 

Im not sure whether I’m a coward, but although I know I’m terminal ( horrible word!)  I just don’t want to know how much time I have..  right now I feel ignorance is bliss. 
Well I did until I tried to book travel insurance today -  I was feeling great that my consultant gave me a thumbs up for ten days in Germany to visit relatives..   First insurance company refused me because I’m terminal. Then phoned McMillan who said the insurance companies would likely ask whether I had a minimum of 6 months to live. ( second insurance company I called confirmed this) ..  So now I’ve left phone msgs and emails with my specialist nurses and am absolutely terrified that the answer will be that I’ve not got 6 months..   

I nursed my little sister till she fell asleep in my arms September 2020. She had ovarian cancer & I thought I knew how she felt because I’d been to every consultation &  every treatment with her … I didn’t have a clue, and I’m constantly thinking of all the ‘wrong’ things I likely said to her, things I would have done differently if only I’d really  ‘known’.  But I don’t think anyone except those in this ‘club’ actually know what it’s like.  

Sorry for writing a book … I’ll shut up now xxx

  • Hi Chelle

    please see my reply to Annette.. I’m confused and worried x

  • Is this the same insurance company that you called previously? I wonder if they have said this because you previously answered yes to the terminal question and have that on record. 

    I have never answered yes to the terminal question, although I am incurable. 

    Have you had a look at the groupTravel insurance forum for cancer patients 

    There is lots of advice and recommendations there. 

    xx 

    Chelle 

    Try to be a rainbow,in somebody else's cloud
    Maya Angelou

    Community Champion badge
  • Hi.. yes it’s All clear, but they didn’t even start a file or quote before plus it was a different person so basically started  from fresh.. 

  • Hi Tina, I think Chelle is right,even if you spoke to a different person, they log all calls so that if someone calls back, it will let them know you have called before and how you answered questions. As far as the question they asked you, my answer would have been " no one knows when they will die or how they will die, so the question must be hypothetical!"

    I would call someone you haven't called before and then you answer NO when they ask are you Terminal?

    I'm sorry you are having this problem. The Post Chelle has put the link to is very informative so I'd look there before phoning anyone else!

    good luck!

    Love Annette x

    Yesterday is History, Tomorrow is a Mystery, Today is a Gift!!!
  • Hi.. I just thought I’d let you know that I managed to find an insurance company and spend a lovely if quiet time in Germany Blush
    I’m now back home .

    I found ‘Media travel insurance’ they were very helpful, very precise and put my mind at ease.  Certainly not cheap as the price was just under £ 900 but as I’d phoned a specialist cancer insurance who told me they require full doctors paperwork & would charge over £1000, I wasn’t too surprised.. 

  • That is great to hear Tina! I am so glad you managed to get away and had a lovely time x 

    Chelle 

    Try to be a rainbow,in somebody else's cloud
    Maya Angelou

    Community Champion badge
  • Great news  . Hope you had a lovely time.

    A x

  • Hi Tina,  I'm so pleased you made it to Germany and had a great time. Hopefully next time when your diagnosis is further away, you may get your insurance a bit cheaper!

    Love Annette x

    Yesterday is History, Tomorrow is a Mystery, Today is a Gift!!!
  • Hi Tina, just finished reading your blog and history, our stories are very similar, so similar you had me crying and smiling throughout. I can see you cared for and loved your little sister, that was far more important to her than any misunderstanding. wanting to know. or not to. how long you have is a up to you .I was told at diagnosis how long i had. i  never even asked, took me a few weeks to come to terms with it. RT HT and cancer really messed me up physically and emotionally so now i have much less body hair, a pair of breasts developing and can cry for England, not sure i am 100% male anymore I have known f or 18 months now how long i am supposed to have left but take very little notice, time is too precious, I am happy you got away to see family, i have not been anywhere for 2 years "hospitals do not count". but going to see family in Scotland soon. thankfully no insurance.so hey ho from one pathetic numpty to another i really wish wish you well, from a fellow club member. take care..

  • Hi Eddie

    Thank you for responding to my ramblings ! 
    So the Uber emotional bit is affecting you too?  I was sort of ok until fairly recently, now I find myself crying at just about anything, I seem to have become hyper sensitive to other peoples plight whether on the news or elsewhere.  I also have days where suddenly reality and the fact that I actually have got cancer hits me.  Ten diving into sorting mums estate / probate etc becomes very appealing ( which it isn’t normally) ..

    I take it that whatever hormone treatment you’re on has cause you to develop breasts?  Or have you had other treatments that have messed with your hormones?  I’m sorry hun, that’s just an added whammy.  

    Im a 70 year old with fluff for hair on my head and (gasp) on the sides of my face !!  I feel like a friendly type of gremlin or fluff ball Rolling eyes

    I hope you have the best time in Scotland , enjoy every minute!! 

    sending you a big hug,

    Tina x