Cancer, brain fog & disbelief

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

  • Oh my!  What can I say to that?  Sending hugs to you as an individual, but you also articulate that there's a part of cancer that only we can appreciate.   Yes terminal is not appropriate.  The clinicians now use "treatable" and "curable" much softer words.  Although from my experience the pensions and insurance space are yet to get on the same page.  

    You are not a coward.  No one knows how much time you have left so refusing to engage in this space is a choice to be respected.  Everyone is free to choose the approach best suited to their coping strategy and general approach to life.  I don't ask my consultants "how long" either.  No point!

    I can't get travel insurance at the moment either.  Their business strategy conflicts with my lived experience.   I am definitely not a travel insurance high risk but I fall the wrong side of critical questions. " Terminal " from a travel insurance definition means that your consultant has had a conversation with you that your time is limited and get your affairs in order, what does the end game look like to you etc  You don't articulate that you are in this space in your post because you are now reaching out to them saying "which side of 6 months ".   Incurable and treatable isn't terminable.   There's no cure for my cancer either.  I'm treatable but not terminal.  

    No need to apologise for writing a book.  People make a living out of it!  It's what the forum is for.  Lots of love to you! 

  • Oh Tina,

    You have had a terrible time with loosing your sister and then your mum. Now you are fighting for yourself. I do think you are spot on by saying you never really know until it happens to you!

    I am insured by Staysure and I have never once to them said terminal but "incurable"! On original diagnosis I phoned over ten companies that said No Thanks, one was going to charge £9,000 for a holiday in Spain, then I managed to get one called MIA but they do not insure people over 70. I have been with StaySure for some time now and they always ask "is your GP or Specialist OK with you travelling" I put Yes because I have already asked my oncologist. A holiday sounds as if it's just what you need, especially when you are visiting relatives, so they are worth a try but remember to say Incurable!

    Regarding your mum's estate, do you have someone who can help you with it all, or if you can afford it, hire a lawyer! Good luck!

    Love Annette x

    Yesterday is History, Tomorrow is a Mystery, Today is a Gift!!!
  • Thank you for your kind words Mmum.. You actually made me snap out of panic mode and gave me a more sensible approach / thought path. 

    You are right, although I’ve been told that I’m now ‘palliative’, I’ve not been given the ‘time to get your affairs in order’ chat.
     
    I should have known, as I was there when my sister was told she had ‘short months’..

    Time to get my sensible head on Thumbsup x  

  • Hi Annette..

    It was MIA who rejected me as soon as I was asked if I was ‘terminal’  (their words not mine). Apparently they used to cover people with a terminal prognosis but don’t anymore Rolling eyes..

    Both Macmillan and ‘All clear’ insurance said that the question I need to be able to answer is whether I’ll still be around for a minimum of 6 months..  No getting around that one no matter which words I use. 

    The chap I spoke to at All Clear insurance had such difficulty asking me the question that I felt sorry for him, he sounded so young and was super apologetic before even asking..

    Regarding mums estate,  My brother and I are executor’s & he lives in Germany.. Also I had to sort my sisters estate when she passed and even though I used a solicitor, the stack of forms / questionnaires I had to fill in was ridiculous.  I’m actually thinking of copying the paperwork when I do get it, & filling in one set for myself to save my boys the headache of sorting it when it comes to my stuff.. 

  • Hi  

    I'm sorry to read of your diagnosis but a very warm welcome to the group. I'm also sorry about your mum and sister. You're right though, no one really knows how it feels to be in this situation unless you're in it. We all know, in this group and you'll find a lot of friendly support here. I feel for you in feeling overwhelmed by the paperwork that a death brings about. I've recently closed down 2 private pensions so that there is less for my husband to do when I die. Who knows when that will be. I'm currently stable after treatment but my only line of treatment is chemo. You made me smile at the - something akin to a full length zip. I'd not heard it described like that before but you're right! 

    There is a group about travel insurance, this is the link  Travel insurance forum for cancer patients 

    Some insurances have checklists online, that may be easier than the phone, if you are able to. I hope you are able to get something booked, a few days away is a nice break from the norm.

    A x

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  • Don’t be so hard on yourself Tina. I bet a lot of us have been there. I hope you find an insurer with a heart! It’s bad enough that we’re in this situation, without being ripped off by insurance companies. They rely on us being too scared to risk travelling without it. X

  • Hi Tina I got travel insurance quote from Insurance with for my cancer, quit reasonable, then this time added diabetes to it and it jumped sky high. Give them a go, hope you get a decent price xx

    Moi

  • Hi Tina, In my opinion, that was the mistake you made when you phoned them. In actual fact none of us are terminal, we are all incurable, so if they ask me are you terminal, I say NO Incurable! Maybe try that the next time you call an insurance place.

    I do hope you get sorted out and get to see your relatives in Germany!

    Love Annette x

    Yesterday is History, Tomorrow is a Mystery, Today is a Gift!!!
  •   The word terminal has been used in a different context in more recent years. It used to be when you were incurable you were terminal. This is not the case anymore, because now so many people are living much longer lives on treatment than ever before. 

    I agree with Annette, you haven’t been told you have x amount of weeks,  so you are not terminal you are incurable, and if you are having treatment, the terminology is incurable but treatable. Getting the wording correct for travel insurance is so important, and never use the word terminal unless your oncologist has told you so…..and to be fair he probably wouldn’t give you the go ahead to travel if you were. 

    Chelle 

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

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  • Hi… the quest for travel insurance continues..

    I phoned my specialist nurse. She said they don’t use the word terminal, to them it means having a very short time to live ie days.. 

    So she said answer ‘No’.. great I though Thumbsup

    so I called ‘All clear’ insurance again.  
    I answered no to the terminal question, I was then asked ‘so that means my life has not been shortened by the cancer & I wont die of the cancer’..  

    In Travel insurance terms ‘terminal’ means that I will eventually die of the cancer / that it will shorten my life.. even if I’ve still got years! 

    Giving a wrong answer can & will invalidate the insurance. 

    To me the insurance means that I wont be stuck without help or have to sell my house to cover the cost of treatment should I need it.  
     Now what?? 


    Tina - confused and worried ….