Kidney cancer update and brain mets

  • 2 replies
  • 53 subscribers
  • 228 views

An update on things. I was out at the coast last year on a day trip with my son, when I collapsed, but still aware of my surroundings and then taken by ambiance to the local hospital, where I had some tests, including scans. Not long after I was seeing my oncologist. My cancer had gone to my brain. That was a shock. I have been given tablets to stop any seizures, which I had at the time of my incident. Touch wood, nothing has happened since.  I was on Cabozantinib, which was replaced with Everolimus, which isn't working according to my oncologist. I have a other scan coming up, so who knows. I am also on Denosumab for bones. I was never one much for tablets before all of this, even Paracetamol, only as a last resort. I'm not one for giving up on things, whatever it is, and wondering if anyone else is going through similar things. There is only me and my 3 children, all adults, early, mid and late twenties. I do have a brother near by who never bothers to keep in touch, though I've e tried too many times, though I do have a good neighbour. My late mum knew the family and saw them growing up.  It just seems never ending. My oncologist first said I am a walking miracle, then it feels like I am being written off with the letter she sent after the recent appointment.

  • Hi Ormebeau

    I'm sorry to read your story...it must have been very scary when you collapsed when you were out.

    Even if your oncologist's letter wasn't encouraging, you may get better news when you see her again to discus the scan results. She may suggest trying another drug, or a different treatment. Don't give up hope!

    Yes, taking medications it can feel like they are taking over your life! I hope you can find the time to do things that you used to do, to maintain a sense of your 'normal' life.

    Have you thought about reaching out for support or companionship? This forum is great for connecting with others who are going through similar experiences to you. There are Maggie's centres and Macmillan centres, and other independent cancer support groups around the UK. There may be one near you that you can visit. It certainly helps to spend time with others!

    I hope you keep posting here, and get to know many of the people who use the forum. 

    xxxx Kate

  • Hi  ,thanks for posting, 

    Our stories are quite similar, I also fell over a couple of years ago, which led to the discovery of brain metastasis a few weeks later.  Also unable to drive now.

    And our kids are similar ages, but I  do have my supportive wife, which really helps.  We share the same attitude to pils!  I've just switched from cabozantinib to everolimus combined with another therapy. No idea yet if it'll help.  My eyes are affected now, giving me double vision and dizziness.

    I've had a couple of letters which are upsetting, they seem to use very formal language when writing but I guess it's understandable. I'm getting a visit from the local palliative care team next week which I am not looking forward to, feels a bit final.

    I understand how you're feeling, I often feel the same way.  All I can really do is make memories with my wife and family and I focus on trying to keep doing things around the house, focussing on what I can do rather than what I can't and trying to stay ahead of things.  Energy levels are a problem but I keep telling myself that I mustn't give up just cause it's hard.

    I have told our kids everything but I don't get much response.  I'm not too sure how to speak to them, all suggestions welcomed.