By Tammi Nkosi
Looking back, I guess something wasn’t right. Had my first period when l was almost 18. Didn’t have another until l was 32. At 35 began bleeding heavily non stop for weeks and months on end forcing me to stop working altogether. By now my tummy had started swelling this was over a six month period. Went to GPs who dismissed it as fibroids.
Firstly l was told you are putting on weight go on a diet. I had been 65kg all my life till then but weight ballooned to almost 90kg in 6 months. Was told l might polysistic ovarian syndrome, then thyroid was suggested had scans, blood tests done that was not the case. Fibroids were present think he said l had 12 of them. Dad was a Dr and he encouraged l go private and get this investigated further.
Finally got scans etc done privately and l had a massive tumour on one of my ovaries. The radiologists refused to allow me to go home saying if l wasn’t operated on within 48hrs l would die. Well still there was a possibility of me dying during or after the procedure. Was later diagnosed as Germ cell tumour which is cancer of the egg making cells of the ovary. Hear it’s rather rare. I was sent to operating table and they removed ovaries, uterus and cervix. I had some eggs Frozen incase l might want kiddies later.
During the operation cancer cells transferred to the bladder walls were it’s currently at. Again this was risk l was willing to take. During this time l didn’t actually understand what was going on. When oncologist told me l had cancer That was the last word l heard. Everything else he said went unheard as l immediately had a mental block. Only option l had at the time was to slice off bladder walls then operate to remove bladder and replace it with a pouch. I refused the operation as l wasn’t ready for that drastic change, just had a major op and parts removed from my body.
With the Hysterectomy it was hello induced menopause. So all the pretty stuff that goes with it and and cancer pain to deal with. I had 4 bouts of chemo and 15 radiotherapy sessions. That’s left my system overloaded with radiation which is also a cause for weight gain so l try avoid standing near microwaves etc.
Some Dr Friends of mine recommended me for a trial drug. I will call it BX as its still being tested. This drug “freezes” cancer cells hence slowing down growth and their multiplication. Before this drug l had been given maximum 18months to live. Free Trial was only for 2years. After which lf l wanted to continue on drug Id have to pay a kings ransom. £2800 per month- approximately R50k per month. sometimes l have to have double dose meaning it’s dearer.
I’ve been on it for almost 6years now. That doesn’t take away my pain, lm in excruciating pain every second of every minute hour and so on. But l like many cancer suffers in my position have to carry on. We’ve perfected the art of pretending all is well. Sadly people get tired of hearing one say they are in pain. I’ve been labelled drama queen, attention seeker and all sorts of hurtful stuff.
So l like many tend to recoil and deal with our pain alone and quietly. Imagine telling someone you are not well and response is “what now”. One thinks to self ok what now?? I’ve been like this for up to 8 years. Sadly these are people we love dearly who say such.
Because one isn’t admitted in hospital no one takes gravity of our pain seriously and also most of our medication is steroid based not everyone has chemo. Some only have radio therapy, even after chemo we tend to pick up and appear fairly healthy.
This particular drug is composed of scorpion venom and steroid cocktails and l pile on weight like there’s no tomorrow. So l try and keep as active as l possibly can. I swim up to 6km a day and run 5km a day. I’ve learnt not to moan as no one listens anyway. I just get on with it.
Ovarian cancer is usually prevalent in the older ladies hence its so deadly in younger ones cos it’s dismissed as no it can’t be you are too young for that. Just started on Sativex (cannabis) spray which takes pain away but side effects for me were too much l stopped it within a week.
Problem with our culture talking of periods is kinda taboo or yuck. But if you feel your bleeding or pain during that menstrual cycle is abnormal see a gynaecologist. Most importantly don’t let them fob you off. They will say stuff like but you are not anaemic, we will give you tabs to stop periods. All these are temporary solutions that mask the underlaying problem. Even guys pls encourages your sisters mothers partners to get checked out. Only way we can fight this evil. Most of all that emotional support is so crucial. We are already down in the dumps.