bit more positive

1 minute read time.

Had a long hard week last week, Had MIBG scan on tue and wed, and CT scan on thur,  All went ok, just tiring.

Don't seem to have good days on wednesdays though.  Last wed was not a good day.  I had thought i was seeing the work councillor and then discovered that my boss had made a mess when arranging the appointments, she had arranged a group session for when i was out having my scan, but hadn't told either myself or the councillor that i wouldn't be there! i was fuming as i had got myself ready to talk to her.

then went for scan which was ok, i even fell asleep whilst having it and kicked the machine by accident. oops! got home though to my new dog (had her a month, 4yr rescue) had decided to destroy my favourite rug and one of favourite tops.  she ahd got bored and ripped them to shreds.  i then went on to poor boiling water over my hand whilst cooking tea! broke down after that but felt better for crying.

it seems to build up and build up hten overtake in a flood of emotion. am getting more used to the idea of my treatment and am handling my emotions bit better each day.

i have reached a point where i am comfortable talking about what is going on and think this is how i work through it.  only problem is that my friends seem to find it hard to listen and try to change the subject which is frustrating as i can't do with having it pushed under the carpet.  whats the point! its here and here to stay for a while.

i am fed up of people getting all serious and maudlin with me, i want to laugh and be cheerful, it woukld be really easy for meto go back into pit of depression, i was there last year and it would be easy to go again.  i understand it must be hard for everyone else but surely i have the right to be a little selfish for once and if i want to talk surely that gives the right to at least have my friends listen to me.

no appointments this week, get my power port fitted next tuesday,  think chemo will start soon after. 

Anonymous
  • FormerMember
    FormerMember

    hey chicken, i'm here to laugh with you and you can talk as much as you like, i'll listen :)  If i do change the subject tell me because I can talk for england and dont't always notice :\

    ha ha ha my first bloggy bit :)  lots more to come

    Love ya lots

    xxx

  • FormerMember
    FormerMember

    Hi Helen - I sent you a private message last week as I saw you had commented on my last blog - what chemo are you going to have?  I started another 6 month course of Temozolomide last Friday.

    Know what you mean about things building up and then you sort of 'crack' happens to me all the time. Chin up love,  Jeanie x

  • FormerMember
    FormerMember

    Hi Jeanie.

    Nice to hear from you. i have double checked my private messages and have not recieved one ?

    i still don't know what types of chemo i will be getting just that i will be getting 3 types. had a few more scans so hopefully with be seeing the oncologist soon and things will get moving.

    i am having my port fitted next week, so after that there shouldn't be any reason for things to be on hold any longer.

    am more positive at the minute than have been, still have ups and downs, but sure we all do.

    how are things going with you and your family? sorry to hear you are starting some more chemo, you definitely been in for the long haul haven't you xx

    your positivity inspires me every time i read something you have written xx

    love and hugs xx

  • FormerMember
    FormerMember

    Hi Helen,

    Would be interested to know what kind of chemo you are having - I had a long chat with oncologist last Friday, and he said there are a few other drugs they are starting to use as well as Temozolomide, which is reassuring.   Sorry to be a pain, but did you say you proved negative for MIBG and octreotide?  I can't remember, chemo brain I guess.

    I was very disappointed that I had to have chemo again, as it's only one tumour that has grown, in my liver, and I was hoping there would be an alternative treatment.  But the only thing that's a possibility is cyberknife radiotherapy - which they would only consider once the tumour has been shrunk down again.  So I had no choice really.

    My son is ok - he has a check-up in June, and then hopefully a scan in October again.

    Never thought of myself as a positive person!  Always remember one of the doctors saying to me 'I think you are a bit of a negative person' after I'd listed all the things that could go wrong!

    Chin up, keep in touch x  

  • FormerMember
    FormerMember

    Hi Jeanie

    My Oncologist did tell me the kinds of chemo i will be on but when he told me it was in the same conversation of first telling me i wouldbe having chemo so i didn't take in a lot of details.  once i know i will let you know.  i just remeber him saying they will be giving me 3 types at once.  i am having my port fitted next week so once that is fitted i should be having another meeting with him and my chemo nurse, so should know more then.

    i had the octreotide in october and everything was clear.  it was the mri in february that found the lump in my liver, then had a PET, which they found lump in my hip from.  Then had MIBG and CT and these are the ones waiting for results from.  the oncologist wanted to do more scans on my bones as they have been concentrating on my abdomen.

    With my tumour in my liver they were going to operate on it, could they not do this with yours?  they have only now decided to start the chemo due to the growth in my hip. they said if it was just the liver then surgery would be the best option of making sure they remove it all, but they didn't want to have to do both chemo and surgery so just gone with the chemo.

    i haven't heard of cyberknife radiotherapy- its name makes it sound rather brutal?

    i think sometimes people can confuse being practical with being negative.  i always like to know what is the worse that could happen then if it happens i can't be disappointed.  i think that is possibly how i have been dealing with it all, if you keep thinking that everything is going to fine then when it isn't it really knocks you.  

    don't know if my logic makes any sense. it does to me lol.

    am hoping to get a little holiday in before the treatment starts so fingers crossed. xx

    keep in touch xx