Busy couple of weeks coming up

FormerMember
FormerMember
  • 249 replies
  • 46 subscribers
  • 191307 views

hi folks 

today I saw the urologist. The oncologists at the trials unit at UCLH are concerned about my kidney function and reckon the stent in my ureter is blocked. With the amount of pain I’m in, it wouldn’t surprise me. So they referred me to urology. But that’s at the local hospital. 

Today I saw the consultant urologist at my local hospital in Maidstone and he agreed. But he’s not sure the kidney is working at all so his plan is a test involving an injection of a radioactive isotope which they then track through the kidneys. If the kidney is working, he’ll replace the stent. That’s a day case procedure but involves a general anaesthetic. 

All that needs to take place before October 16 when I am due to start an immunotherapy trial. I also have to fit in a CT scan, a fancy blood test that requires a team from Cancer Research labs to come out with special kit and a biopsy. 

So it looks like I’ll either be waiting for hospital appointments or in hospital for much of the next fortnight. 

Bother. 

  • FormerMember
    FormerMember in reply to FormerMember

    FFS Daloni, how infuriating and frustrating for you and totally avoidable. You're not creating extra work for them with an official complaint, they did that all by themselves and this should be flagged up so that the system can be improved. Maybe there's another way of doing that? You're hugely invested in this and the practical and psychological preparations are immense, forget temper tantrum, there is such a thing as justifiable homicide!!!

    I hope the wedding goes really well and you're able to enjoy it Daloni, gutted on your behalf and sending a massive hug. Lots of love xx

  • Hi Daloni

    First, I didn't want to "like" your post but I know you'll understand that I meant "Aaaaargh Daloni!"

    Such a waste of time all round, and with a little forward thinking, Monday could easily be your day for the operation. I would be inclined to complain, and then the same situation would hopefully not occur to others. But it's your call.

    Have a great time at the wedding, Daloni, and also at the poo collection lol. 

    Tvman xx

    Love life and family.
  • Hi Daloni

    What a horrible time for you with something that could have been avoided. I cant understand that the psychological as well as the physical effects of these delays have on people at their most vulnerable arent realised. As a retired nurse I know complaints make work but they also highlight need for change in systems and forward planning.

    Have a lovely family time at your nieces wedding xx

  • Hi

    I'm with   and I think that's a horrible guilt trip to lay at your door. 

    That sister should know better than to use those words. She may well be exhausted but they're caring for very poorly people, not selling bread. The consequences are too devestating. Not on. How on earth can things change if those in the privileged positions of changing them don't know the full extent of the problems. Rant over.  You're very gracious Daloni. 

    Enjoy the wedding, how precious. Hoping the family notice your daughter's needs and next week is a little easier. Kindness and puppies all round. 

    Lots of love 

    X

  • FormerMember
    FormerMember in reply to Gobaith

    Thanks peeps! I’m going to put everything to do with hospitals to one side for a few days. I’ve made it through the Friday traffic from Kent to Shropshire in one piece. We’ve had a lovely family plus bridesmaids dinner. I remembered everything I needed to bring. I am now in my hotel room in an old coaching inn. I’ve lucked out with the room and have a bed the size of a football pitch. I exaggerate - but not much. Aaah bliss 

    xx

  • FormerMember
    FormerMember in reply to FormerMember

    You deserve Daloni, hope you sleep well.  Enjoy the wedding and for a few brief moments forget all the complete crap you're having to deal with xx

  • There should be another button apart from the "like" button but don't think a "don't like" button is the right thing either!

    Its so frustrating when professionals tell you something is urgent and you believe them, then all of a sudden they change the goalposts and think it's alright! It's not fair!

    About the complaint! I told my oncologist I was going to complain officially about the waiting time for her clinic, which was over three hours. She said "oh great, I've been asking for additional clinics for months and they won't entertain it, please do write, they don't listen to us". Two months after I wrote, she had an extra four clinics and her part time nurse went full time, which she had been asking for, for over a year! So you write away, but not until you've had a great weekend at the wedding!

    Love Annette x

    Yesterday is History, Tomorrow is a Mystery, Today is a Gift!!!
  • Have a great weekend Daloni.

    love and hugs,

    Gragon xx

  • Hi

    This may not be in the right place but I'm tired and I have to get up at 6.30 in the morning. Reason? I'm going to Peterborough to stay with my daughter for a week. Most of you will remember that she miscarried 2 weeks ago and I've had to wait because I can't travel alone. I've been waiting 2 weeks to give her what she calls a special daddy hug. She's 33 but still my wee girl Slight smile

    I'm probably going to be quiet for a while but it's hard to be without a message from my friends.

    See you later folks.

    Tvman x

    Love life and family.
  • FormerMember
    FormerMember in reply to tvman

    Hi 

    Safe journey. Have a good old cuddle and maybe a little cry. Then dry the tears and do something nice. 
    love and hugs xxx