Stage 4 hope 11 1/2 years later !

I normally put up a post each year after mum’s scans but I got sidetracked this year .

A lot of new people facing the uncertainty of a stage 4 diagnosis. A little encouragement to those starting out , learning to live life in spite of a difficult diagnosis and learning where possible how to face a chronic condition . 
This was mum celebrating her tenth anniversary. Poor guy at the back carrying the load as he does on so many , many occasions. I do normally row but thought there was a good chance I would hit mum in the face . 

Keep pushing forward where possible !

  • Fantastic and a great step forward .

    This is such a big and difficult system to navigate but despite it all I think you have done an amazing job of moving this forward on your own ! I am really proud of you as I know it was a rotten week for sure !

    You are actually quite skilled at self advocacy despite it being hard !

    Anyway that was such a quick response! What a lift !

    Hope you have a nice time with your sister today ! 
    So nice of your parents wanting to support you but you still have this under your control !

    Take care ,

    Court 

  • Many thanks Court, 

    That is very kind of you. 

    I will try to get the email address of the oncologist tomorrow. Yes I had a nice walk with my sister. We got a bit wet in the rain but saw a double rainbow so that was lovely. My other sister came in the morning so that was lovely. They are both being so kind, and I know want to do what's best for me without upsetting me. I am taking my best friend who is a nurse with me on Wednesday so that will be good. I was just too stunned really to ask any coherent questions at the last apt, all I kept thinking was I don't want to die just yet. And they were telling me to visit the hospice. Anyway I just have to wait and see what happens next. I have put a message about the lonsurf on here so I will see if I get any replies. I have had a good chat with process on BCUK so that was lovely. And others there have been very supportive and helpful.

    Going to see the new Bond film tomorrow pm!

    Xx 

    Best wishes 
    LouLoubelle64
  • Great idea to take your best friend ! That’s perfect .

    Great you are getting support . That’s the amazing thing about the forums !

    How was Bond ! I will need to go and see it soon !

    Right now I am trying to get all the outside jobs tied up at my parents  before it’s too cold !

    Take care ,

    Court 

  • Hi we too are intending to go to see James Bond tomorrow going early afternoon so hopefully can keep away from others trying to not catch anything right now. Hope you enjoyed it louloubelle64.  It has forecast bad weather here tomorrow so hope it’s not too bad for you doing outside jobs court.. we are trying to keep occupied as best we can. To keep the mind  demons from spoiling good day.  Yes forums are great for support from people who just get it! Xx

  • All the best for your appointment tomorrow  I shall be thinking of you .

    hope you enjoyed James Bond ! Seems to be a good movie !

    Got lots of garden jobs done at my parents and my own so feeling good !

    Still a lot to do but makes you feel better ! 
    take care ,

    Court

  • Hi Court,

    Yes I hope I get on OK tomorrow. I took your good advice and emailed the questions to the nurse ahead of time. She will send them on to the consultant. I will let you know how it goes. The film was very loud, quite scary and too long tbh. And I can see why they didn't release it during the pandemic. It wasn't like the Bond films of old that's all I will say. It was a welcome distraction though so that's good.

    Hope you got all your jobs done outside!

    Xx 

    Best wishes 
    LouLoubelle64
  • Hi Process, yes it is great to have these forums isn't it. There is truly some amazing people on them. I will let you know how it goes tomorrow. Scared and anxious about it, it will be OK I am sure. I just think I need to start the lonsurf as soon as possible. But the apt system is backed up as we all know. Hope you and hubby are doing OK.

    Xx 

    Best wishes 
    LouLoubelle64
  • Just updating one aspect as true stage 4 Hope has to be in research so all can benefit !

    Mum’s scans and cell info has safely made its way to Oxford ! Next step is samples and bloods I think ! More info is in the post and I will be able to read more about the form this research is taking ! 

    Think we are all willing the scientists  on to make a breakthrough at some stage in the near future !

    Have a good day !

    Court 

  • Yes definitely Court. I have done some research on the BCUK site and it seems that the best chance for me as KRAS mutant is to have the lonsurf and avastin. But as Avastin is not available on the NHS at present I am not sure how I can access it. I have read of people having shrinkage of their tumours with lonsurf also. So still holding on to hope. Especially as I feel well at the moment. I had to go to the GP yesterday as didn't have a good few days, he was lovely and said I was probably in delayed shock at my diagnosis /prognosis. I have all my letters and CT scan results now from the GP so I am interested to know what the private oncologist says next week. Hope you and family especially your lovely mum are all well.

    Xx 

    Best wishes 
    LouLoubelle64
  • Hi, sorry but why won't they give you avast in if it would help you, I prob being bit of a novice asking this 

    Bud xx

    Xxxxx
    Bud 18