I am now day 19 Post Hysterectomy. I had my surgery on the Friday afternoon, and back to ward to recover. My surgery was done by a lovely surgeon who I saw before surgery once. Now the story behind this was as follows:
I saw the first surgeon who did the Biopsy and Hysteroscopy, I then saw her in clinic where she told me I had Grade 1 Endometrial Cancer. She then said she was going on holiday for a week and gave me a couple of contact numbers. This surgeon had booked my Scans the day before she saw me for results, so she was on the ball. I was booked for a CT scan and MRI scan. I told her that I wouldnt be able to do MRI Scan as I am Claustrophobic. The last time I needed one I had to do sedation. As this takes longer to book (Needs Anaesthetist) she decided to proceed with just CT scan. I went for this and even that took me all my time to do, but the fear of having this cancer out as soon as possible overrode the fear of the CT.
I got the scan quite fast as I called my CNS and said the consultant I saw was away on holiday and I hadn't received my appointment for the scan yet. She called me back and arranged the Scan for the next day.
She also arranged for my results to be discussed at the following MDT Cancer meeting that Thursday. This was the same week the consultant I saw was on holiday. I thought it would have been delayed, but another consultant took over and read the results. I was then given an appointment to come in and see another consultant. Now i had asked for my surgery to be booked at a different hospital as I didnt want to go to theatre in a hospital I worked in and knew everyone.
I saw the consultant who discussed the results with me, it turned out that day the computer system was down and he couldnt read what the previous consultant had discussed with me. I told him not to worry as she told me and I remember. I told hime she had said it was in the Endometrium and invaded hte muscle of the womb. He looked at me very confused. He then asked my name and DOB. Told me yes he had the right person and then told me it was not as invasive as I had been told. It was in the Endometrium, as glad as I was about that I didnt understand why I had been told differently.
The Consultant asked if I wanted him to do the surgery , I said I didnt mind who did it as long as I had an experienced consultant. Then a letter came in for date of surgery, at the hospital I worked in, I called and asked why? Due to waiting list constrictions that was the next available date. I wasent going to complain as I wanted the surgery ASAP. But the anaesthetist had rwad my notes and decided weekend surgery with limited staff was not safe on this operation and I was rebooked to original hospital I wanted.
So day of surgery I walked into the ward at 11am, but no bed available so had to wait a while. I was prepared for surgery and told there would be a bed on my return. I saw the anaesthetist beforehand and told him I was claustrophobic and even having the face mask on made me anxious. Well he must have told the consultant anaesthetist as he gave me some of the drug for putting you to sleep and I felt the face mask on and couldn't care less.
When I woke up I was propped up on my back, in pain, but got more painkillers. I slept that way the 3 days I was in hospital, it is impossible to sleep on your side due to pain and I felt like everything was moving. The next day at 6am the nurse comes into the ward to refill the water jugs and open the blinds. Breakfast was 7am, then we were all asked to sit up so the beds could be made. Later on that day a nurse came to take me to the shower, the shower room was in the bay and there were visitors. When I went in I asked her to lock the door, she said she couldn't as they didn't lock them in case they had to get in, I said she was in there with me so it didn't matter. The sower didn't even have a curtain so if you opened the door it was looking straight into the ward. that happened only once, after that I showered myself.
Getting dried and dressed was ok as the nurse helped me dry places I could reach. I had brought in a nightdress that was stretchy and had little straps, this made it easy to get on. The wards can be hot so it was much better. The surgical stockings are a task and a half to get on, these were to remain on I was initially told for 28 days, I was also to have daily injections of an Anti Coagulant, for 28 days.
So day 2 on ward the ward round happened, and in comes a consultant (Not the one who operated)and x2 junior doctors. I asked where my consultant was, to be told her had left after my surgery to go to another hospital to start two weeks of surgery. I asked about the details of the operation, the consutant said in the notes it did not say anything untoward happened, I asked if my Cervix was also removed, he said oh I cant answer that I will get some one to read your notes, I was like exactly!. I f I had seen the consultant who operated I could have asked these questions. So I had come out of surgery with a drain in and a catheter.
He told me both could come out, which I was happy about. The drain was somewhat uncomfortable to come out, but quick, and the catheter was fine. I was told I had to pee on my own before going home. So I started to drink and went to the loo, not much really came out. I had a bladder scan afterwards only to be told less than half my bladder emptied. So I had to try again, so I did and still the same. I unfortunately then had to go home with a catheter in for a further two weeks to let my bladder recover. I was gutted at this as they are so cumbersome.
I admit I did have a bit of a wobbly at the thought of dealing with all this at home, they told me I could stay in another night to get used to using it, but I didn't see that it would help me any as I was going home with it in. So I packed up my bag and with mymedications and catheter supplies I went home utterly exhausted. That night I went to bed I had to remove the tube from the catheter that keeps your day bag open/shut and connect a night bag. When I got into bed and tried to lie on my side I realised this was not going to work, the pain was too much. I only had 4 pillows which were not enough, but had to make do that night. I sent my husband to the shops the next day and he came back with a further 8 pillows. three under my knees and the rest propped me up. The next day I realised my arms were sore, and this was because they had no support. The next night I put a pillow under each arm and was much better the next morning.
Now I was a bit OCD regarding my bowels as I didnt want them to stop working also. They didnt work for the first 2 days, but the hospital sent me home with medication for them, which I used and on day 3 they moved, to this day they are still not right yet, but they are moving.
Now the catheter bag was really getting me down, I never felt like I was recovering while I had it in and two weeks seemed an awful long time to keep it in. I persevered untill I started to feel pain with it, I called the ward and told them, their instant reply was Phone your GP, I said I was not doing that as this was not a GP problem. I told them where I lived a Gynae ward there was closer and I would call them, this was the ward I was going to, to get my catheter out. I called them and told them the problem and they said I could come in and get the catheter out and try, this was 4 days before it was due to come out, I was absolutely ecstatic.
I went into the ward the next day and they took it out, but I had to do a trial without it, I had to drink one cup of water every hour, my input and output were measured, also had bladder scans. While there I also asked them to cut flush to the skin the dissolvable stitches are the areas were becoming red and inflammed. this they did. I also asked them to test my urine as I was sure I had a urine infection, Ths they also did and I did have an infection and was prescribed antibiotics. 4hrs later and my bladder was working again and I left the hospital without the catheter HURRAH!!
I also had an episode of breathlessness prior to my above post. I did call and leave a message with the CNS, turned out she was actually on holiday and someone else was supposed to be picking up messages, but didn't get mine. As it is I didnt wait anyway and called the ward, this was the first occasion where they said to call my GP, which I did. I was seen that afternoon and then sent over to the hospital. After being assessed by the doctor they decided to do a CT scan. I went down and I think because I had little energy, just after surgery, my claustrophobia just didnt allow me. SO back up to the ward I went, they asked if I would try gain with 10mg Diazepam and 10mg Oramorph, I said yes worth a try but said I probably wont be able to as the adrenaline kicks in and the table effects wear off. Well that is exactly what happened. So I was booked to go to another hospital for an upright scan. Two days later I went in , oh and the doctors gave me prophylactic anti coagulant to treat incase of a blood clot. It took three doctors 10 attempts to get a canulae in to give the dye, it didint work. They got a consultant down who did it in one go, he then proceeeded to tell me that was the first time in a year he had done that, I was just relieved and laughed. I got the scan which was clear. Back home to recover.
This is my story up to date, I hope it helps inform others at their different stages. I am waiting on final results for staging to see if I need further treatment. I have to say my first consultant did ask if I bled after surgery, to which I said yes for 4 days. She looked at me with a moment of silence. I know she thinks there may be cancer cells in my cervix because of this. If there are this would stage me at 2 and I would need further treatment, I am wholly expecting this to be the case. It does seem odd that you go into hospital for examination and that treatment can increase the staging of the cancer and add in further treatment. Wish it could be done without the need for biopsy.
Thank You for reading
Nina
