PALS

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Hi,

Having an interesting time. I attended a consult at the Royal Free, where I saw a consultant from the RF and a radiology consultant from UCH. The upshot was that the consultant from UCH wanted to do a biopsy followed by an ablation, or sabr radiotherapy. I wasn't going to die from the tumour on my right kidney, but it had grown and needed an intervention.

I received summary letters from both Consultants, but no biopsy date. Three weeks went by and I contacted PALS UCH about contact details and was told it could take 10 days (My Nurses at Barts have been involved). 10 days passed, no contact, so I sent a reminder to UCH today, no reply. E mailed PALS  RF and received a full reply that it has been followed up. Jeez, what a difference. Just to clarify, I've been under UCH before and had nothing but frustration on the admin side and I am.concerned about falling between the cracks having been a number of hospitals at the same time (I'm currently under 4). I just amazed at the difference between the two teams.

  • Hi IanW

    I am sorry to hear of your kidney cancer.

    I can understand your frustration in having to chase up both hospitals and there clearly is a difference between both teams. I am glad you have had a response from PALS RF and it is being followed up for you. 

    I hope that you will get some answers soon as to when the biopsy can take place. I understand your worry about falling through the cracks whilst being under 4 different hospitals. Perhaps your GP could also follow up for you if you dont hear something soon. 

    I wish you well for your biopsy. 

    In the meantime, please do give the Support Line a call if you need to talk things through. It can be really tough dealing with all the admin related appointments etc.

    Jane

           

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Hi

    Thank you. Luckily enough the Royal Free got it sorted and I have a pre op assessment on Monday 14th July at UCH. Only problem I have is chronic anxiety when it comes to having my blood pressure taken. I have told and I'll see what happens. 

    You can stick needles in me, scans etc, and no problems, but when comes to BP, it can be a nightmare. All started when I had a bladder resection and the anaesthetist wanted to stop the procedure. The Urologist stepped in and overruled and everything went fine.

    It doesn't matter where you go, there you are
  • That's great that you have your appointment through for Monday. I hope it goes well.

    I am the same with blood pressure- always goes sky high when they take it. I always find the cuffs are unpleasantly tight and get bruises from them.  During chemo I used to have to do it at home and bring the reading in each time. Maybe that could help if you have access to a monitor. 

           

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Hi

    I used to monitor, which helped, but I recently moved house and restarted monitoring again. Unfortunately, my readings got wiped off when I got a new phone. I would have started again, but I've so many trips to the hospital, plus helping my daughter buy a house, that I never got back to it. I did one reading a few weeks back, which was 141/80 in the morning and dropped to 132/80 in the evening.

    The fear I get is that the procedure will not go ahead, thanks to my previous experience. When I had chemo, my BP would be high, but drop about four minutes after the bag was attached.

    Thankfully the med teams are more aware of this condition. 

    It doesn't matter where you go, there you are
  • My mum has kidney cancer & had to go through PALS to get her biopsy sorted, as one hospital sent the wrong paperwork to another hospital, which delayed her biopsy by 2 weeks.

  • Hi all,

    Biopsy looks like it's going ahead on 21Jul 2025 at UCH. I had a quick chat with my GP yesterday and I'm on beta blockers to lower BP and anxiety and seems to be working.

    It doesn't matter where you go, there you are