In Limbo........update!

Hello all of you lovely ladies that have replied to me..........just got a phone call from the hospital, my appointment has been cancelled for the 28th, seems the surgeon has decided to go away for a week (bank hols) - absolutely gutted!! Surely he knew he was going on holiday, I made the appointment weeks ago. Does anyone know if I can ring and ask for CT scan results myself to give me an indication of which way things are likely to swing in favor of - Operation or more chemo? Many thanks Lyn x

[coksd]

in the hospital i attend its the oncologist that gives the results the gyne -onco attends the MDT to give input and compare scan results with radiologists and the prob discuss if you are suitable for surgery if he attends the meeting before holidays maybe the oncologist could meet you tell them you are unhappy to wait I would cause uproar with them if it was me- tell them its not good for you to be this stressed. I have put in so many complaints about the way I have been dealt with and have got a few issues sorted out. Get your GP onto them too that the wait is too much they should have known his holiday schedule before arranging scans and follow ups. good luck

[Hidden in reply to coksd]

Just found out that my Oncologist is also away the same week...........disbelief!!!!! I am definitely going to have a massive moan to them all, as so unprofessional of them! I have decided to try and relax and enjoy the extra week of no chemo no op, guess it will all come back soon enough. Lyn x

[Scummings1 in reply to Hidden]

Can you get access to your own records? Is there a patient portal?

[Alifit]

Hi Lyn. That is rubbish. I would phone the consultant’s secretary and see if there is any way he can see you sooner. My team work across all their patients, so they start the list at the beginning of the day, seeing the next person until they’ve finished. Perhaps there is another consultant who can see you.

I’m not sure they will let you have the results before you see them - they would argue that imaging and ‘doctor speak’ is open to misinterpretation, therefore possibly causing alarm.

I think you have a good case to complain - surely they understand the level of anxiety we feel whilst waiting. Call your CNS too. Have they given you another date?

Take care, Ali x

[Petrolhead]

Hi Lyn

Appalling behaviour without arranging for you to see someone else.

My hospital (Russels Hall Dudley) have a “patient access records department “

Maybe your hospital does too. Might be worth asking. I have got copies of stuff this way. I recently had a biopsy for a suspicious thing on my kidney and got a copy of the biopsy result before I saw the consultant. (Benign yay!!! )Greatly put my mind at rest.

Try ringing your consultants secretary and see what you can get.

Best of luck

Fay

[Maus123 in reply to Petrolhead]

Glad it's benign. Xx. Maus

[Cropcrop in reply to Petrolhead]

Good result for you Fay ❤️Xx Jane

[dryden1]

Hi, Really sorry to hear this is happening to you, Really not on. I Agree with the other suggestions you could. phone your specialist nurse or the Consultants secretary and explain the situation . I am not sure I would want the results of a scan over the phone but I would want the earliest appointment after the consultant as come back from holiday . Chris

[Hidden]

So sorry. Don’t think you will be able to get result without consultation (you can ask for copies then). Ring secretary of consultant. You may be able to get appointment with oncologist who would/ should be able to discuss scan results with you. Certainly any future scan would be discussed with oncologist

[Hidden]

I would ring the CNS not good to keep you or any of us in suspense but if you are now happy to let things go and get an early apt when he comes back well, that is fine too,

[Maus123]

That blows, sorry Lyn.

Still.. for such an important update I would want to make sure the news is given by (and options discussed with) my own oncologist/surgeon if at all possible. Maybe another experienced onc consultant / oncologist .. maybe. But else I'd say waiting another week may be the better choice for such a critical message, even with the wait being near unbearable.

What if whoever gets on the phone isnt fully briefed on your case and blurts out something that isn't right, could be misunderstood or causes you lots of unnecessary stress? Just a thought..

Meanwhile I cross my fingers for good scan results for you, and possible surgery soon. Xx. Maus

[LittleSan]

Limbo time creates anxiety. I'd chase if at all possible. Hope you get sorted soon. Xxx

[Howick01]

Take some consolation in the fact that August is the changeover month for doctors so your team will have an extra week of learning the job!!!!

Hope all goes well with you 🌻🌻🌻🌻🌻

[Seasun36-uk]

I wonder if your GP can pull a few strings for you Lyn? Lxx

[Hidden]

Morning Seasun - I have decided to try and turn the negatives into positives, a lot of the ladies on hear suggested distraction which I didn't think was possible with my current state of mind but I am enjoying looking for things to do, I am organizing days out! We are National Trust Members and intend to take full advantage, Dinner somewhere nice on the way home, It will be the 4th of September before I even know it...........Hopefully. Hoping you all have a fantastic long weekend. Lyn x

[Cropcrop]

It’s hardly very professional to leave you with nobody you can contact. Do you have a CNS who can access the results or maybe your GP could find out on your behalf. I hope you get some answers sooner rather than later lovely ❤️Xx Jane