I don't expect anyone to read this. However it's almost 2 am, I can't sleep yet I'm so very tired. I'm fed up of googling my cancer, or worrying that I've pulled a muscle near my scar - I thought getting my thoughts down might be therapy...
I've always thought I suffered from IBS, but when this started to feel a little worse I went to my nurse in May. We discussed what it might be and I had a blood test for coeliac disease, and she booked me an appointment with the female Dr at the practice to discuss it further.
On the day of the appointment the lead Dr at the practice called me up saying that I didn't need the appointment because the results had shown I wasn't coeliac but my thyroid was under active. He cancelled my appointment telling me to get another blood test in a few weeks. I was annoyed at this, I had wanted to see the female Dr but the shock of the call meant I didn't question it.
I return and see the lead (male) Dr a few weeks later, as I walk in he tells me I'm overweight. While this is true I know I've been eating well and going to the gym, I've lost weight. He starts me on thyroxine. I start to notice bloating, I'm no longer loosing weight and really should be now I'm in medication. I think I have IBS, so I go to the doctors. I'm in the room 30 seconds, he doesn't look at or touch me but gives me IBS medication.
The medication is awful. I can't eat, I feel rough, I look pregnant. I go back less than two weeks later: he busily signs prescriptions whilst talking to me. He does a referral to the gastro Doctor, gives me more medication, still doesn't look at my stomach. I get worse, I look 9 months pregnant with triplets, I go back to the doctor a 4th time and it's only now he looks at / touches my stomach. He sends me for an urgent ultrasound and blood test. The next working day he calls me in and tells me to go to A&E. I'm admitted to the gynae ward that afternoon. This has taken two months.
All the doctors at the hospital can tell this is a gynae issue BY LOOKING AT MY STOMACH! Why couldn't the GP?
Anyway I have two CT scans and 14 litres of fluid drained off my abdomen. I've never lost weight so quickly.
I'm assigned a Macmillan nurse, and I'm terrified. I see the consultant for the first time, they opt for a laparoscopic biopsy. They fear this is bad: they think it's stage 3c and that I'll need aggressive treatment. I ask him if I'm going to die. They don't answer. However he says if when they get all the results it's anything other than what he thinks it might be hell want to give me a big hug.
They remove my right ovary and the 12cm tumour during the biopsy, plus another 2 litres of fluid. I'm lucky the tumour is low grade, but they've seen another tumour on my left ovary and other masses / spots e.g. In the peritoneum. The doctor says the best option is a total hysterectomy, that they can't really save any fertility because of the size of the tumour and spread: I'm 32. I have no children or partner - I've always focused on my career.
I have the surgery, and except for a small infection in the would heal well. The doctor is pleased, he's got everything he could see. When I see him he hugs me: I'm not going to die.
They think it's now actually stage 1c3 or 3a2 depending on how they look at things. The tumour on my left ovary was borderline only, but they found microscopic traces of the low grade stuff in the fluid and fatty tissue and peritoneum. So I need chemotherapy to mop this up and reduce the risk of it coming back. Though when I think of it no one has said what the chances are of it coming back, any ideas?
I see the oncologist. He tries to explain carboplatin vs carboplatin and taxol. I say I just want the best chance of clearing it all up and no relapse. I'm having the combined, even though borderline/ low grade stuff doesn't really respond to chemo. I guess it's belts and braces, it's their best chance of being sure.
So it's now a week since treatment one, I've cut my hair short - had some side effects, but apart from being knackered I think I'm ok - but I'm paranoid about EVERYTHING. How do people cope with the paranoia of getting an infection?
I'm also having hot flashes. I've been told I can't have HRT as the tumours were oestrogen and progesterone receptive, so I can look forward to osteoporosis GREAT! Something else to look forward to.
I know I'm lucky. I know I'm going to get through this. I know my surgeon is pleased and relieved. But boy it's hard. I can't work (I'm a teacher and kids are germ factories), I'm a carer for an elderly relative and although my friends are fantastic I feel alone, and scared - scared about what kind of life I'm going to have. I know I'm lucky to have a future, but I want it to be worth it and that's a lot of pressure.
