Our journey Living with kidney cancer

2 minute read time.

My brother was diagnosed with rcc last april,2010 after invesigations into heamaturia and heavy feeling legs! No other symptoms were present.

 During investigations into bladder infection! (i wish) and a CT scan it was discvered he had a 10cm tumor on his right kidney with vena cava involvement, he was fast tracked to the christie and to withington hospital with a wiew to urgent surgery (Nephrectomy) However this was deemed not safe at present so the docs did a pocedure called Embolisation to stop the blood supply to his kidney in hope that the nasty thing would shrink, i was with my brother throughout this operation in theatre, he was amazing, so so brave i talked  his ted stockings loose and all went well, things seemed gradually better, less blood in water, weight gained, for a few weeks.

The frank heamaturia returned with large blood clots so we went to hospital and he was admitted, the operation was repeated as the docs could see vessels missed first time, so off we went again.

 This was so bitter sweet for me, as i am a nurse and was absoloutly amazed and priveliged to see such a procedure done, however this was my sweetheart brother whom i adore and have an amazing relationship with, i had to trust the medical team to do what i couldnt.

I dont think i stopped crying for days and days, but i was as strong as an ox when with my R. Result it worked and things got a bit better for several weeks he gained strenghth and weight, he was started on Sutent, this gave him 4 months of stabillity, then scan showed progression in lymph nodes, the sutent was withdrawn and we were offered Temsirolimus trial at the Christie in Manchester, of course we have nothing to lose so took this chance both for R and for all of us for the future.

 He has faced this with such grit and bravery, the trial has been tough and have recently had a 2 weeks break due to awful side effects, his 1st scan since starting the trial is on tuesday11th Jan, i am terrified for him, i am routing for stability at least, for shrinkage at best, thats the only way we can possibly have nepherctomy with a lesser risk, R is very fatigued and aching at the moment and blood clots and bleeding are back, i am exhausted looking for a pathway to help and ease his trauma and pain.

To be continued.... Love and hope to all XXX Pati

 

Anonymous
  • FormerMember
    FormerMember

    I did it, i am a blogger!

  • FormerMember
    FormerMember

    hi patti

    everyone here is on a journey hun and its the hardest journey we have ever been on in our lifes but you know on here there are the most wonderful kind caring people who know exactly how you are feeling i have my good  days and my bad days like everyone else but there is always someone to give me support love and hugs when i need them which is often

    my love and thoughts are with you all right now keep smiling although i know its hard

    take care

    love jen xxxxx

  • FormerMember
    FormerMember

    Hi Jen,

    Thankyou so much for your kind words, today is a good day for R and therfor us all in our house, weve been out for a walk together with our 3 children the distraction did us all good.

    I think i read that you have a hospital appt this week too, i do hope you get the answers and a way forward Jen, i am routing for you, where do you have your treatment? hope to speak soon.

    Love Pati X

  • FormerMember
    FormerMember

    Hi Pati,

    I wish you and R all the best for the future. Hope all goes well with his tests and treatment.

    Take care and be safe Big Hugs Love Sarsfield.xx

  • FormerMember
    FormerMember

    Hi,

    thankyou for your good wishes sarsfield, Hugs to you too xx

    Well my R is driven insane with painful itching, oh so awful for him the rash from drugs is picking up speed again, although not as bad as before the break, he is very tired due to disturbed sleep with itching. Hope to do drugs review tommorrow whilst at hospital for the scary scary scan. I can here him getting up now, heres hoping he is a bit more rested, my poor R x I urgently need the trial to work and continue for him, then often think; my god i cant believe  im wishing for him to have the drugs that seem to be killing him, in order to save him ARRRRRGGGHHHH!!!! this is so cruel, so wrong. Ok now im going to go look at last summers photos of all the amazing days out etc, i must get positive, Love to al XX Pati X