Hi everyone.
Apologies, this will be a long one because I just want to write it all down.
Back in November I had an extreme menstrual bleed that landed me in A&E. My periods have always been dodgy as I have PCOS but this was extremely unusual. They sent me home with some TXA and the promise of a referral to the heavy period clinic. I had another big bleed (but not as big) around 10 days or so later so I called the Gynae unit at my local hospital. They got me in to see a clinician that weekend. She went through my symptoms and I let her know i have an extensive family history of various cancers including my maternal aunt having cervial cancer when she was only 27. She assured me that it was most likely polyps and referred me to surgery to have a hysteroscopy, myosyre, and a mirena coil inserted (to help with heavy periods). I was to have this under a general because I could not tolerate a speculum (even child size) due to what I suspect is vaginismus. I was put in a 3 month waiting list. I got my date 7 months later.
On 9th June I went in for my procedure and was told that the anesthetist that day was uncomfortable with me having a general because my BMI was 60. I had a spinal block and sedation instead. After the procedure, I was told a uterine and a cervical polyp was removed, a biopsy was taken, and the coil has been successfully fitted. They said the polyps were the most likely cause of the bleeding. I was sent home with 3 weeks of provera and 10 days of TXA. I was not given a date for a follow up as they wanted to wait for my histology results to come in.
On 25th July I was sick of waiting and called the medical secretary for my surgeon to ask about a follow up as I had been consistently bleeding since a couple days before the procedure (when my period started). She apologised and said that I had come though an unusual pathway and wasn't actually a gynae patient. She arranged me a follow up appointment for 7th August.
My appointment in the 7th was at 3pm. I needed to leave work early for it. My mum was taking my sister to the dentist so she could not attend and my best friend and flatmate works odd hours so it was during his sleep time (he also has a horrible cold so I wanted him to stay home and get his rest). I went alone thinking everything would be fine.
I didn't think much of it when time was ticking on. It got near 4pm and I was then taken for height and weight. I was then told to sit outside a particular room while the nurse went in with a member of my surgeon's team to review my notes. She came out a few minutes later and moved me to a different waiting area stating that the consultant (surgeon) would see me instead. At 4.30 I went in to see my the consultant. I realised that I actually knew her personally through a choir we both attend. We sit on the same row. I apologised that I didn't recognise her when she did my surgery and laughed that I'd been under sedation for a minute or two when we spoke. She gestured to the other people in the room (a resident doctor and a nurse) and let them know that I keep her afloat in certain songs and she really missed me a couple weeks ago when I missed a session and she and the rest of the back row struggles with a song that me and my flatmate know well! Then we got to it. She asked me how I had been feeling. I explained about the bleeding and some period pain. I showed her the chart I'd kept on the back of my mirena insertion booklet.
She then told me that at certain kinds of appointments most people would like someone with them so would I like to call someone in? I said I came alone and its OK I can do this myself. I knew at that point something was wrong. I could feel a weight in my stomach. She explained that my biopsy showed cancerous cells and that I have uterine (endometrial) cancer. She apologised that I had not been contacted. She said that I was never referred through a suspected cancer pathway and no one expected an otherwise healthy (though very overweight) 30/31 year old to have cancer. She explained that the results had only been seen at the review before my appointment despite having had them since the end of June. She let me know that I will need an MRI in the next 2-3 weeks and that I will need a hysterectomy.
In order to have this hysterectomy I will need to lose at least 6 stone to be in a safer zone. She has referred me to fast track bariatrics to help with that. In the mean time I will be on provera 3x a day for at least 3 months and will need to have a hysteroscopy/myosure/mirena change every 3 months. Due to my issues, this will be done under spinal block each time. I was then handed a card by what I now know was the oncology nurse in the room with details to call her for support. My next procedure is to be booked for around the beginning of September.
I left the appointment in what I feel like was a state of shock. I found myself laughing on the way to the hospital pharmacy to collect the provera. I felt like I was going to have a panic attack while waiting for my number to be called. I left and immediately drove to my mums. I tried to form what I was going to say on the journey. My mum has an atypical neuroendocrine tumour in her lung with metastases in her pelvis. It is not curable but manageable with lanreotide injections. I have been her "tour manager" for her appointments and procedures for the last almost 2 years. How was I going to tell her that I have cancer too?
Usually when I just pop by her house we chat in the car so I don't get covered in dog hair from her yellow lab. I think she knew something was wrong when I asked to go sit inside. I told her and there were brief tears but we are practical women so she started writing everything down including expected tests, procedures and time scales. She went and told my brother who lives with her. He is autistic and she is his carer. He understood and patted my head before going back up to his room.
I had an agonising wait when I got home. I knew telling my best friend would be harder than my mum. I let him sleep until his usual time of 21.45. I didn't want to wake him early. He deserves a few more hours of peace (and with that horrible cold, the rest). I woke him up with a cup of tea and some lemsip (he can't do tablets, really, a 32 year old gay man!) and let him slowly come back to the waking world before telling him. He was devasted that he had not insisted more on coming with me to the appointment. I told him that if I had any idea I'd be getting that diagnosis that I would have made sure I wasn't alone. I also reminded him that he is currently dripping with snot and would probably not have been very welcome! He let me cry and held my hand until I went to bed.
I went to work yesterday and didn't tell anyone. I plan to speak to my direct line manager on Monday as he was on leave yesterday. I called mum yesterday morning and got upset about everything carrying on as normal. I know it's irrational but it felt like everything should stop for a minute to give me some time to process. She made me laugh saying that she had me beat with her technically terminal diagnosis (we're just like that) and I felt able to get though the day. It was weird at work just knowing and I found my patience to be thin at times with difficult or demanding clients (I work in drug and alcohol recovery).
I'm trying to keep a positive outlook while we move forward with tests and procedures. I don't know how long I had had this for or what my staging will be but I'll take each day as it comes
If you made it this far, thank you for listening. If anyone has any tips or tricks for this waiting game of a process, please let me know.
Thank you x
