Hi I'm new here, so much to say so I'll start at the beginning. In January I had an abnormal smear test result and was sent to the hospital to the colposcopy department where they took a biopsy due to abnormal cells (February) When the results came back I was sent back for a leep procedure (March)and told that I would get my results and may need to go back for another one depending on results. So the first of april I got a phone call asking me to attend the hospital alone (covid lockdown) to see a doctor... I asked her if it was for another leep, she said she didnt know. I then asked why I needed to go up there as it's over an hours drive and she told me it was just routine. I arrived the following morning alone and to be honest a bit nervous, I was taken into a room and told unfortunately it is cancer.... at that moment I didnt know what to do or how to feel! They asked if I was ok, I remember thinking that nothing about this situation is ok, I should have someone beside me to help take in any information and to be there for me. I finally replyed with so what cancer is it? I was told cervical cancer and that I would need a pet can and a mri scan and they get these done asap but due to the lockdown there may be a wait and then depending on the results I may need surgery. I then was taken for blood tests and then sent home. That's when I began living in a whirlwind. I got a phone call that afternoon booking me in for a pet scan for 2 days later... the following day I got a call booking me in for a MRI again for both I was told to go alone! I went for my pet scan and my MRI the following morning and that afternoon I got a call from a surgeon that I needed surgery and they were going to perform a full hysterectomy and take everything away.... I needed to fully isolate for 2 weeks as my surgery would be in 2 weeks time. And again not to forget to come alone. My biggest fear in life was anaesthetic so the thought of surgery terrified me. The night before I wrote letters to my children and family as I believed I wouldn't make it through the anaesthetic! I said goodbye to my partner (who I'm a carer for) and my children and left for my surgery not knowing what was happening or when I'd see anyone again. When I got there I briefly spoke to the surgeon *10 mins) and went down to theatre. Obviously I came round ok and I came home 2 days later, just before coming home I asked if someone could explain did the op go ok etc as nobody had told me anything. I was told all went ok... I would get my results in about 2 weeks and someone would call me. I was send home with nothing else but some pain meds and injections. Not even dressings for my wound. We had to order dressings online as all my local chemists had run out. My wound got infected and I needed antibiotics and 3 weeks later no call. I decided to call my surgeon to be told yeah it looks ok.... I said so you got it all? She said hopefully it looks like it... I'll see you in october!
Since then I've had bleeding.... pain, omg the pain in my pelvic area and back is like nothing I've felt before. My surgeon doesnt reply to my GP, I finally got her to send me for a scan which I had 3 weeks ago and still heard nothing. My appointment has now been changed to January which I'm not happy about as I was meant to have a smear in october. While I appreciate how fast everything moved and how amazing that I got my surgery I still know nothing! I was told just because they took my cancer away it doesnt mean I'm cancer free?? I dont get it..... I've had no one to speak to about all this and no support at all! People tell me I'm entitled to things and to contact my cancer nurse... but I dont have one!! I'm living in pain and barely make it out of bed most days and nobody seems to care! I just feel so overwhelmed with it all. Before cancer I was fit and healthy, now I cant even live a normal life... I just dont know!! And to top it all off I'm also going through a forced menopause!! Life just sucks at the moment!
Sorry for the story and rant!
Hi and a very warm welcome to the online community
I'm very sorry to read that you were diagnosed with cervical cancer and that you are in considerable pain since having surgery.
As you have said, it does sound like everything was acted on really quickly but you've been left with both pain and questions. I can see that you've joined the cervical cancer group which is a great place to ask questions, share experiences and get support.
It is quite right that normally you'd have been assigned a cancer nurse specialist (CNS) who would be the first person you'd contact with questions, or to talk to when you have issues such as the pain you're in. However, as we're not in normal times it may be that the hospital has reassigned the CNSs, but that doesn't help you.
As you have phoned your surgeon in the past, I'd suggest that you phone the contact number that you have and ask to be given the details of your CNS, if there is one. I don't know if the telephone number you have is the surgeon's secretary or direct to the surgeon but leave a message if the phone's not answered. If this doesn't produce any results then I'd get in touch with PALS (Patient Advice and Liaison Service) at your hospital and explain your problems with not being able to speak to your hospital team to them. Part of their job is to help resolve concerns or problems when you're using the NHS.
Sending a supportive ((hug))
"Never regret a day in your life, good days give you happiness, bad days give you experience"
