It was 6 weeks before I got my biopsy results.
6 weeks of torture! 6 weeks of crying and feeling sorry for myself. 6 weeks of planning my funeral.
After my surgery I had spent the time mostly sleeping. It was surprising how little I could do. Yes, I was in pain, but everything was so awkward even going to the toilet was causing me problems. If only they had cut the other way, along my bikini line, it would have made things a little easier.
My mother in law had broken her pelvis a few years before and had one of those pressure cushions. Wow did that come in handy a few weeks of mostly sitting can cause your rear end some discomfort issues. Especially when you have to sleep, sat upright, on a recliner sofa. It was impossible to lie down for the first two weeks and most certainly impossible to get up from lieing down position. I seriously do not know what I would have done if it hadn't been for my husband.
I remember being on the sofa as comfortable as you can be after such a massive surgery and needing the toilet. The problem was how do you get up? How on earth do you use your legs, which by the way were perfectly fine, to push the recliner back down. It is unbelievable how much we use our stomach muscle to do. My stomach muscles were sliced through and only beginning to heal. I felt so useless having to call my husband from the kitchen where he was getting food for us to just push down the recliner so I could spend the next 10 minutes getting up the stairs to the toilet. How I wished we had a downstairs toilet.
I had the local nurses come to my house every other day to check on me and make sure my scar was healing properly. After ten days I had to have my staples removed. I was not looking forward to it not one little bit. But it had to be done and I just had to suck it up and let the nurse get on with it. To be honest it actually wasn't that bad yes it was a little painful but I had endured much worse pain. It was a good job really as I had 56 staples in total. I wonder now why I never took any photos of those staples while holding my stomach together and also after they were out. There were just so many of them. I remember being amazed at how much skin had actually been pulled in tight and the 1cm staple was now 3 cm of skin. No wonder those things were pulling and making the skin red and sore.
After two weeks I was able to move a little easier I even went to bed at night although I was still almost upright propped up on lots of pillows. I couldn't leave the house and as it was summer I was at least able to sit out in the garden and get some sun on my face. I did try to got out once or twice but after just 30 minutes out I would be wiped out for the rest of the day. I hated the exhaustion that came with the recovery. No one told me it would be that bad.
4 weeks after the surgery I started to get upset, annoyed, angry, frustrated and every other emotion you can think of. Why hadn't anyone contacted me. I wanted to know what the results from the biopsies were. No, I needed to know what they were. As did my husband.
I actually hadn't heard anything from the hospital at all. I could not bear to wait any longer so I telephoned my consultants nurse to ask if my results were back. She asked me to leave it with her and she would come back to me later in the day.
Just before 4pm I got the call. I was terrified to hear what she had to say. When Lyn told me that it was good news all the results came back negative for cancer relief washed over me and I started to cry. Then she told me that the endometriosis had also be confirmed from the biopsies. As I didn't have cancer I had now been transferred to a new gynae rather than the oncologist that had done my surgery. I thanked her for phoning me back with the results and hung up the phone.
My husband had been vacuuming upstairs when the phone had rung and hadn't heard any of what had just happened. I slowly made my way up the stairs with tears streaming down my face and grabbed a hold of him. It is funny how I remember these strange details. He had no idea what was wrong with me and I had to try and explain that there was nothing wrong and I had just spoken with the nurse and I didn't have cancer. I could see the worry lift from his face.
Now we just had to wait for a follow up with the new consultant to find out what would happen next. So we did just that. We waited. And while we waited I googled and searched for information on endometriosis. I found support groups on facebook where I found a lot of information and it was somewhere I could ask questions and other women who actually had this disease were able to answer me. From experience's they had had themselves.
After feeling alone for so long I was beginning to realise that were thousands of other women out there who were suffering in pain and silence just the way I had been. I was gaining a whole new group of friends. Friends who I have never met and likely never will. Still friends that will be there for me when I need them. Just as I will be here for them. My endo sisters. I love my unbiological sisters.
Wow. What an amazing post. Having gone through seven surgeries for endo now (one hip-to-hip), I could totally relate with your description of recovery. No one outside our world seems to understand how bad it sucks. I can't imagine compounding that with the fear of cancer. I'm so sorry you had to go through that. If you ever want to commiserate, I have a blog at http://theprincessandthepeestick.blogspot.com. Good luck with everything.
ReplyDeleteThank you Princess! I am following your blog. I love how you are setting it out, if only life were the fairytale we all hope for.
ReplyDeleteYour journey is heartbreaking... I'm thinking of you.
ReplyDeleteI left an award for you on my blog.
http://lifelovelivininit.blogspot.com/2011/02/it-feels-like-im-living.html