I haven’t been on this site for a couple of years, maybe more! I popped on today because I have just been discharged from care as it’s now 5 years since my treatment and I wanted to share the news. I found this forum helpful at the time as there were a few others at similar stages of treatment to me, but as others have said, as we recover and move on we stop coming to this forum.
My cancer was picked up after smear, which to my shame was two years overdue. I was fortunate and was staged at 1b1. The worse part of the whole journey was the week between having my MRI and being given the results. Made worse by being told I’d get a phone call on a certain day…then nobody phoned and by the time I called the hospital there was nobody there who could talk to me. So I called back the next morning and the nurse said she didn’t know why I hadn’t had a call and she’d get back to me within half an hour. Three hours later she finally called back, but in that three hours I had convinced myself that the MRI had shown the cancer was much more advanced than expected. During those three hours my husband also took a call from his employer telling him he was being made redundant! It was the worst, most stressful morning ever.
Anyway, when the nurse finally called she confirmed the staging was 1b1 as expected and that my treatment would be a laparoscopic radical hysterectomy, bilatereral salpingetomy with ovarian conservation and bilateral pelvic node dissection (basically full hysterectomy, but leaving my ovaries, and removal of lymph nodes). That it was unlikely that I would need any further treatment such as chemo, depending on whether they found any cancerous cells in my lymph nodes.
The reason I tell this part of the story, is to reassure anyone who experiences delays in care or communication that it doesn’t necessarily mean bad news, though it can be easy to assume the worst.
I had the surgery and as hoped, didn’t need any further treatment. I found the recovery a bit longer and more difficult than I expected and months later was experiencing some pelvic pain, particularly during sex. I had scans but nothing was found and they suspected it was caused by adhesions. It gradually improved and after a year, maybe two, it resolved completely. I also had some numbness down my right leg for a year or so, but that eventually got better.
About 8 months after the surgery I felt shocked at how unfit I’d become so I bit the bullet and got a personal trainer, who I still see twice a week. I’ve improved my diet and try to eat as healthily as possible, without being mad about it. I feel the fittest and most healthy that I’ve ever been.
I was told that even leaving my ovaries, the hysterectomy might bring my menopause forward a little and over the last year or so I’ve been having perimenopausal symptoms (both physical and mental) so spoke to my GP about HRT. Unfortunately the GP gave me incorrect information about this, including telling me that my cancer was hormone receptive which made her reluctant to prescribe HRT - my oncologist confirmed that this is not the case. However, I really don’t trust my GP now so plan to see a menopause specialist privately, which makes me sad and angry. I also plan on putting in a complaint to my GP surgery.
Five years on, looking back on my experience of having cancer, I appreciate how lucky I was that it was early stage and fairly easily treated. I completely acknowledge that this is unfortunately not everyone’s experience. However, I feel weirdly positive about it all. My friends and family were all amazingly supportive, one friend took the day off work to come to my first appointment with me, others cancelled plans to take me to the pub. My son even came dancing with me! I was very open about my diagnosis, I don’t think I could have coped with being secretive or pretending everything was okay when it wasn’t. The response of those around me made me feel very loved.
My advice would be to be open and honest with the people around you and then have minimal contact with anyone who projects negativity onto you.