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Posted: Wed Jan 23, 2019 4:31 pm
by Theresa Upton
So we waited for 2 1/2 hours today to be told that they could not give me the results of the scan I had on Saturday. I knew that the scan would not have been reported on by today but I was told that all the images would be on my file and the oncologist would be able to tell me something...……….nope, she said that she was not qualified to read scans...…….she wasn't prepared to pull up the images from my scan in October and compare them with the images from the scan on Saturday. Things got slightly heated when I was told that results cannot be given over the telephone so I may have to wait another 2 weeks. My oncologist has been off sick since November and I have seen 4 different oncologists since that time, the one today was really inexperienced and apart from agreeing to chemo tomorrow couldn't answer any of the questions we put to her today. I must say that my care until today has been excellent, I really feel let down by today events.

Re: Disapointed

Posted: Wed Jan 23, 2019 7:42 pm
by Annabelle
Oh Theresa I was so sorry to read this, I came on here tonight especially to see how you got on and hoping for good news, my heart goes out to disappointing, I dont think that some people in the medical profession realise what you go through mentally before these appointments, totally unacceptable, we know how you feel, my husbands appointment to see his Oncologist last week was cancelled but we were not told...3 sleepless nights (scanxiety) 3 hour, 56 mile round trip for nothing...

Re: Disappointed

Posted: Wed Jan 23, 2019 7:58 pm
by Theresa Upton
I just feel a bit numb, I was hoping for news that would support how well I feel and look...……….still I am doing OK and I will have to be patient.
You travel a long way for appointments and I think I would be soooo annoyed if I travelled all that way just to be sent home again. I was trying to explain to the oncologist and nurse today that when you know that you have a short time left in this world every day counts, you want to know what is going on with your body but you don't want to be hanging around hospitals longer than is necessary...…… seemed to fall on deaf ears. I hope you get to see the oncologist soon, I have chemo tomorrow so will push for some answers...………...they couldn't even tell me about my white blood cells or tumour markers today.
Take care and let me know how you get on

Re: Disapointed

Posted: Wed Jan 23, 2019 8:33 pm
by Annabelle
I will Theressa, good luck tomorrow and I hope you get the answers you are looking for, its seems like it is some sort of secret sometimes, my favourite question from the medics is “do you have any questions”? My answer is what would you be asking if it was you or a loved one going through this?
Hope all goes well tomorrow.
Ann W

Re: Disapointed

Posted: Wed Jan 23, 2019 8:38 pm
by KeithKerry
Chin up Theresa

Kerry has had at least two scan results given over the phone to her, so it can be done. Perhaps it's a local policy for the hospital that you attend. If it is, it's an incredibly insensitive and unkind thing to do to make you wait yet another two weeks. It's not as if you're waiting to find out if a fractured collar bone has healed neatly.

You should feed your experiences back to PALS if you can.

Re: Disapointed

Posted: Wed Jan 23, 2019 10:00 pm
by Theresa Upton
Thank you Keith, I have written a letter of complaint, I have tried to be gentle because staff are so busy but I have raised a number of issues. I spend so much time waiting around in the hospital and time is very precious, I feel more could be done by telephone and better planning. I am also worried that very unwell people are expected to sit in hospitals where infections just breed. Lets see what happens with the letter I have emailed to them.

Re: Disapointed

Posted: Thu Jan 24, 2019 5:16 pm
by toodotty
Hi Theresa,
I am so sorry to hear about your disappointment. I had exactly the same, a week after my scan we turned up for review and it hadn't been done. I told the Oncologist in no uncertain terms that I was not impressed, my husband had taken a day off work and quite frankly it was just not good enough. I was also disappointed that it was the junior that had been left to break the news to me, how cowardly of my Oncologist not to face me directly. I did apologise to her and explained that I knew that it wasn't her fault but that it was unacceptable that this should occur and that I would be making a complaint, which I subsequently did. The next day she rang me to say that she had acquired the results which were looking positive as the tumours on the periterneum had gone. I was so emotionally shredded that I burst into tears. Do use PALS it will help you in the future and other patients as well.

Of greatest importance is how you feel and it is wonderful that you are feeling so well. Read that as the best indicator of how you are getting on.