Hello,
I want to write it all out. For context, I am 21 and have had no previous medical issues.
Last October, I presented with extreme abdominal bloating. I went to the GP and urgent care multiple times, and to a private stomach specialist, who all told me it was constipation. I stopped eating, I could hardly stay awake, and my breathing had diminished.
On the 20th of November, my mum took me back to the GP and forced them to give a solution other than laxatives. They sent us to a&e, and the doctor who examined me immediately flipped his lid. What had been consistently diagnosed as bloating/gas was actually fluid. He was so angry that it had been missed so many times that he wanted their licenses revoked. He did an ultrasound to see where it was coming from, but there was so much fluid that he couldn't see any of my organs. (for context, I am a size 6-8, but with the stomach swelling, I looked nine months pregnant)
I was sent for a CT, told there was an unidentified mass, and was blue-lit to another hospital with a specialist gynaecology ward. The ambulance technicians would talk out loud about the information they had been sent to deliver to the ward, so they wrote it on their gloves to show the nurses. My mum arrived shortly after, and they told us there was a high chance it was cancer.
The next day, they made an incision and inserted a drain into my abdominal cavity to relieve the pressure and to test the fluid for cancer. I don't remember much from the first hospital stay, other than trying to walk down the corridor and collapsing. They couldn't figure out what it was, or how bad it was. I was discharged with a date to see a specialist oncology surgeon to discuss options. They told me they were completely in the dark, that they could see it was large, and that they might open me up just to find out nothing could be done. Because the drain had been removed, the fluid had built back up again, he decided to cancel his personal plans to get me in surgery that week.
He decided to do an open surgery because he needed to deliver the watermelon I had inside me. So my incision is two inches above the bellybutton, and an inch above the labia. I had an epidural to aid recovery. Then there was recovery. The night after my surgery, the PCA and epidural ran out at the same time, although I alerted the nurses, it didn't get refilled until the morning. So I was hours behind on pain relief and incredibly uncomfortable. I was told by night shift staff that I was allowed oral pain relief to bridge the gap, but the bank nurse who took over my care refused me pain relief. She also refused to change the dressings on both cannulas. It seemed to be a prejudice against young women, as another girl across from me, also 21, was refused her migraine medication and pain relief. This nurse later overdosed me by giving me a mix of oral meds and suppositories that she should have known not to. She blamed me for these shortcomings, then, when drawing blood, yelled at my dad to get her a new vial for collection. Just bonkers.
Anyway, they had braced us for the worst, so my family and I decided that we were celebrating our last Christmas together. But we were called back in on Dec 24th to the news that it was stage 1a Sertoli Leydig Ovarian Cancer. Obviously, this is best case scenario, but it just feels bizarre, like the rug was pulled out from under me, then as I've stood on the cancer rug that one's been pulled too.
I have an appointment next week, as they have found that it has been caused by a gene, and will most likely cause issues in the future. We weren't surprised by this as my uncle has had Testicular, skin, and kidney cancer, his mum has skin cancer, and her mum had ovarian cancer, so we have always suspected a genetic predisposition. So I presume I will probably have further surgery soon, either for a hysterectomy, mastectomy, or thyroid stuff.
It's weird to move on. I am so young, I am going to meet so many people, and I don't know at what point to tell them. I miss being a young person. I miss going out and dating and hooking up and just generally being a twenty-one-year-old. I am scared about having relationships and having to tell them, or being intimate, and them asking about the massive scar that runs down the centre of my body. My hair is also falling out now as a stress repsonse which is pretty pants.
I just wanted to rant. I think because I was so quickly diagnosed and then told no further treatment is currently needed, people seem to overlook the fact that this is still an incredibly traumatic event.
Anyways. Just wanted to write it all out.
