Update, "best" and "worse"

Sorry that I have not posted an update re my Pancreatic Cancer diagnosis on top of my CLL, but it has been a very traumatic few weeks, and I have come to realise just how vulnerable the NHS is.

On discharge from hospital I was told I needed a Endoscopic Ultrasound Biopsy and this would take place the following week, in reality it was two weeks, and the result which takes a week was inconclusive, so I would need another one, and this would be 'tomorrow'. This became two weeks, only for it to be cancelled as the only Doctor that can perform this procedure in my NHS area had to go away, so that added another week, it was finally done thursday of this week, and now have to wait five working days for the result.

As you can imagine I am very worried that this time scale has compromised my health.

16 Replies

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  • Just so sorry that you have been messed around so much. 5 weeks on and you are no further forward. It really must be awful for you to cope Ednarose.

    At least you will know next week now. Still a long time to wait though. I hope your family are being a bit more supportive to you.

    My very best wishes are sent to you during this traumatic wait. Take care.


  • My family are really supportive, my husband has been fantastic, he is learning lots of new talents he didn't know he had, my daughters wonderful, although they are finding it very difficult. But we are all coping as best we can, and hoping beyond hope that we could have a good result soon.


  • Hi Rose,

    I was wondering how things were going for you following your last post. These kinds of delays in results and procedures are tortuous and I feel for you trying to cope with them. When my friend was going though similar procedures for her pancreatic cancer, she was subject to delays that I found infuriating and inexplicable! She's now totally in remission and I have to be honest and say the prognosis didn't look good for her initially. So please stay strong. You've already endured enough already but you sound to be made of stronger stuff.

    Hoping that you receive good results soon and I really hope you're coping with the inevitable emotional upheaval this must be causing you and your family.

    Keep in touch with us all Rose.

    Best wishes,


  • The waiting must be awful, very difficult for you and your family.

    Sending very best wishes to you


  • Ednarose, I am very sorry to hear about all the delays, and am trying not to feel angry about it... Hopefully this timescale won't have compromised your health, but the mental/emotional stress caused by these delays is no small thing... I am very grateful for our NHS and reluctant to criticise it, but in this situation I would be tempted to say something stronger than your words that the NHS is very "vulnerable". I'd better not say any more on those lines now, or it won't be helpful to you or anyone else...

    I have great respect for your attitude to all what's happened, and I hope and pray for a good result next week, and for you to have some peace through these coming days of waiting...

    Wishing you well,


  • Just to say you are in my thoughts and prayers Rose .


  • I'm so sorry to hear of your difficulties. May I say that, unfair as it is, if you make a fuss, something may be done - you deserve an apology, at least. It is so difficult to have the strength to do this when in such a position, but they need telling or they (NHS) won't improve.

    Sending you virtual hugs

    Chris in Wales

  • Good morning EdnaRose

    I am so sorry that you are experiencing such awful delays and share your frustration as I have the same problem with appointments to check the progress of clots at the back of my eye.

    Good luck with the test results - sending hugs.


  • I'm so sorry you have delays to cope with on top of uncertainties about your health. It must be emotionally draining for you and your family. Your family sound a fabulous source of support and strength. Keeping everything crossed for a swift and good result for you.

  • Distraction, distraction, distraction. Hope you can plan fun things to keep your mind active. I have discovered adult coloring books when I need my mind to rest. Best of luck. Sending hugs.

  • Those delays would be making me absolutely crazy. It's not like you have a hangnail! Hang in there and be strong.

  • Wishing you all the best.

  • Waiting is one of the hardest things to do. Hopefully this last waiting period will go quickly for you. I agree with Jill4, adult coloring books are extremely relaxing. Just find something that you really enjoy doing and treat yourself. Prayers going up for you. I can only imagine how scary this is on top of the CLL!


  • Wishing you all the best Edna and perhaps a sooner response! So sorry for the delays. It must be so difficult for you all!


  • unknowns are the worst, and delayed procedures are the second worst :(

    wishing you a smoother path from here on in!

  • Hoping you hear your results soon and experience no further delays. You are in our thoughts.


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