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Feel very let down

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eliop
Feel very let down

Can somebody tell me if I'm overreacting?

Today was my ultrasound appt - I was unsure as to why I was having an ultrasound after an MRI, so I mentioned this to my CSN. CSN said she had no idea, but  would let the consultant know,  and that she would get back to me. I heard nothing more of it so presumed it was necessary and went in as instructed. Subsequently, I posted on here and found out that this is routine practice; so:  A) why didnt my Band 7 CSN know this? B) why didnt she let me know it was cancelled?

I turned up today. I took a day off work, lost a days pay, and a days worth of feeling like a normal person. Traffic was terrible and the car park was manic. Went to the dept and was told that the appt had been cancelled. I found this really upsetting. I called the CSN and she didnt pick up. I texted her instead. 30 mins later she responded by text - it's fine, she's probably very busy. It just felt like text was the laziest responce to an error that has cost me money, time, and normality at work. She said she was sorry that the consultant had forgotten to tell me. - I am not sure that it was his job to.

This is the first time I have really cried since diagnosis. I feel like my CSN doesnt care at all. She certainly doesn't seem to have much respect for me. Perhaps she is terribly overworked? Perhaps she is going through some stuff? She also text me at 6.30am on monday to tell me that my MRI would be discussed that day. She text me later on that afternoon to say that my MRI hadnt been processed. - I dont mind that it hadn't been processed, but why text me at 6.30am to tell me it had been?

I just feel let down, scared and sad.  :(

 

 

 

Petesdragon
Petesdragon's picture

I don't think its routine practice. An ultrasound is a quick and easy way to identify if there's a tumour. I can't see why they would do it once they know you have a tumour there. It makes sense that it was cancelled. Not telling you that it was cancelled is an  oversight which must have been very annoying.

Regarding the MDT. Slots at the MDT to discuss patients are booked in advance. Clearly your CNS booked you in and kept you informed but it looks like the MRI wasn't back in time. She wouldn't have known that at 06:30 and I am sure she meant well. 

You have had a frustrating day but that is all it is. Nothing really terrible has happened today. I think all your emotions are in overdrive over the major events in your life and there simply isn't any headspace to deal with minor frustrations. 

You will feel much better once your treatment commences. Your MRI has at least been done so it won't be long now.  

Try hard not to shoot the messengers. There was no malice intended and I am sure they have your best interests at heart. It's just human error in an overpressured service.

Karen x

 

    • Stage 3 Glassy cell adenocarcinoma  1997 (negative smear tests).

Treated with Wertheim's hysterectomy, chemorads.

October 2017- new squamous cell vaginal tumour diagnosed,  probably radiation-induced. 

Total pelvic exenteration on 19th December 2017. 

March 18 Post-op CT scan shows healthy kidneys and successful urostomy and colostomy. No evidence of recurrence. Discharged by urology and colorectal surgeons. 2 down and 2 to go!

June 2018. CT scan shows 2 new pulmonary nodules.  

CT Scan Jan 2019. Nodules gone. No evidence of disease. 

Helen7

I'd really like to know why they do both. I had an ultrasound followed by MRI, different regional area too. By the time I went back after my colposcopy I'd had ultrasound but not MRI, they couldn't tell my staging from it and estimated 2b. My MRI said I was stage one so I had unnecessary additional worry.

I'm sure there must be a reason especially with a struggling NHS. 

You really are at the worst stage and all the anxiety really hits home at this point. Keep yourself busy and I'm sure your follow up will be very soon. Once you get a clear picture it does ease. x

eliop

Thank you. I just hate going into hospitals for no reason. Plus taking time off work. But you're right, it's a squeezed service (I work in the NHS, so I know that much). I just felt a bit let down. 

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Cervical cancer