Cancer Research UK main site

The Fear

Balibee
Offline

Not me but my husband. A cough that wouldn't clear; xray, ultrasound, ct scan. Now tomorrow is a biopsy. Everything so far is terrifying.  I seem to remember only about ten words from the consultation on Friday: lung cancer, secondary, kidney tumour, inoperable. 

Then he said there was nothing he could say until the biopsy. I'm not sure there's much else he can say. Today I went to work and couldn't say anything because they would only ask questions I couldn't answer.  Now we have to wait in limbo over Christmas trying to create some kind of normal when I don't think we'll ever know normal again. I've read everything I could find and I wish I could unread it all. My husband wishes he'd never gone near the doctor. 

  • Offline in reply to Balibee
    Hi Balibee, so sorry to hear, it appears you are really being mucked about and not receiving the service level as listed in all the protocols / timelines that should be followed for cancer patients. Service simply just not good enough and no duty of care bring followed. Time for serious complaint Midge 2
  • Offline in reply to Midge2
    I wrote a reply but it got lost... you'd never guess my whole working life is spent wandering around this kind of technology! So we got a call on Monday from the first, respiratory specialist, back at last from his Christmas holiday. He was terribly apologetic and said my husband would get sent directly to the specialist cancer hospital to get treatmemt plans sorted with further tests done afterwards. But that was then and here we are at Wednesday and my husband is now off work just feeling ill and I think as much of is is just heartsick as anything else. He was back at the gp this morning who is sending him for yet another drain as the pleural fluids have built up again and the cough is destroying him. Waiting is a four letter word to us now.
  • Offline in reply to Balibee
    As you say some news but stalled again. I am amazed you are being treated so poorly. Perhaps it's time for your GP to start making some calls . If I was being treated like this I would be kicking off in a big way. Feel so sorry for you. I went private for all my treatments and the speed on all was very good. My be worth thinking about. midge2
  • Offline in reply to Midge2
    Balibee. How are things ? midge 2
  • Offline in reply to Midge2

    Hi Midge.

    Better but not much different. He went in for the drain but they kept him in and did a pleurodesis. It's helped a bit. But while in, the doctors pushed and got a date at last with an oncologist, who we saw on Thursday one day shy of SEVEN weeks since initial diagnosis. 

    But now we kind of know why. The lung cancer is strange. It's not acting like either primary or secondary. The kidney cancer is papillary. But I can't find much on that to understand the difference yet. 

    So we're back to waiting. Another ct scan and a needle biopsy of the kidney. And the next consultation 3 weeks on Thursday.  And still no answers, no treatment plan. I sort of understand- they want to be dead right with the diagnosis to allow them to be spot on with the treatment.  My husband is dead tired all the time, and dreadfully breathless- but not Ill.  Not failing. They feel they have the time to take the time to get it right. 

    But we're waiting. Still parked in the sidings. 

    Thank you for asking, Midge. 

  • Offline in reply to Balibee
    Hi Balibee Sorry I have been off line for a bit. How have matters progressed ? Does your husband have a treatment plan ? How are you coping ? Things ok ish with me next scan due early April but having some left field issues that they are treating. Best midge 2

Speak to a nurse

Quick links

Follow us

Registered with Fundraising Regulator (logo)
Cancer Research UK is a registered charity in England and Wales (1089464), Scotland (SC041666), the Isle of Man (1103) and Jersey (247). A company limited by guarantee. Registered company in England and Wales (4325234) and the Isle of Man (5713F). Registered address: 2 Redman Place, London, E20 1JQ.