Current CA125 level: 11
Current pain level: high
Mood: weary and uncertain
have been on a bit of a roller coaster since I last wrote. Everything
had been starting to get better since the hysterectomy last July and I
was starting to feel physically stronger. Then a few months ago the pain
came back and it's been getting worse ever since.
had some residual abdominal pain since the hysterectomy but day-to-day
things had started to become a bit easier, like walking Molly to school
and carrying Tess around. I got to Christmas feeling positive about the
future and hopeful that hospital admissions were finally behind me. Then
in January I noticed the pain getting worse. It started becoming more
frequent and sharper. And after a few weeks I started to feel bloated
and uncomfortable, and was finding eating meals difficult. After a month
things hadn't improved, and with pain, bloating and feeling full all
symptoms of ovarian cancer
I phoned my oncology nurse at the hospital. She immediately got me an
appointment and a couple of days later, at the start of March, I went to
see my oncologist.
By the time I went to the appointment I was
in a lot of pain. My oncologist took one look at me when I walked, or
rather slowly shuffled into his room and said I needed to be admitted
into hospital. I'd been expecting him to send me for a scan so it was a
shock to be admitted on the spot. I was totally unprepared for being
back in hospital and hated that, for the second time, the girls would
have to cope with me disappearing into hospital without warning. I was
also really worried the cancer may have come back or that I might have
another pelvic infection, and I was convinced I was going to end up
having surgery again.
Thankfully, a CT scan and an
ultrasound scan the next day showed there were no abnormalities, and my CA125 blood test
came back at 11, well within the normal range. (CA125 is the chemical
in your blood that is sometimes produced by ovarian cancer
cells and therefore can be an indicator of ovarian cancer. The upper
range of normal is 35.) It was such a relief - no cancer and no surgery!
But with the reason for the pain still unknown, it was decided I should
be referred to a specialist oncology surgeon for further investigation.
Eventually, after five days of pain management, I was discharged and
got to come home - it was so good to be back with the girls!
week after coming home I got a surprise call from the hospital asking me
to go for an MRI scan the following day. It was one of those sickening moments when you get
an unexpected hospital call and are left panicking about what it means.
But my oncology nurse phoned later that day and explained the new
oncology surgeon wanted me to have one so he could look at what was
going on. Panic over!
I had my appointment and finally got to
meet him yesterday. He was very nice, although greeted me by saying I
was famous and that he'd been hearing about me since my surgery last
year - not really what you want to hear! In medical land it's sometimes
better if they don't know about you - if they talk about you it's
because there's problems or because you're an unusual case, something
I've been told many times! Anyway, he said at the moment there's no
clear reason for all the pain but that, given where it is, he would
expect it to be caused by either the bowel, bladder or remaining ovary.
He said looking at my notes he'd considered malignancy, bladder or
kidney stones, or infection. But there's no clear evidence of any of
those from my scans. So, rather than proceeding straight to surgery he
wants to put me in a chemically-induced menopause for 3-4 months. If
that alleviates the pain then the problem is more likely to be coming
from my ovary than anywhere else. Being put into the menopause will also
stop the flare up of any endometriosis, which could be adding to the
In the next week or so my GP will start giving me a monthly
injection of Prostap-SR.
Because it prevents the production of oestrogen and effectively shuts
down your ovaries (or ovary in my case), it's likely to bring all the
typical symptoms of menopause: hot flushes, night sweats, headaches etc.
Not exactly a lot of fun and I can't say I'm particularly looking
forward to it. But on the positive side it might reduce or even get rid
of the pain, and as I'm writing this with a hot water bottle practically
strapped to me to try and ease the pain, that's got to be worth it. In
3-4 months I'll go back to see my surgeon again and, based on how the
injections have been, the decision will be made about whether or not to
Looking ahead I feel pretty weary at what's to come. Not
only am I facing a chemical menopause, but on the other side of that
there's the prospect of more major surgery. And in the meantime there's
no guarantee the injections will even stop the pain. Trying to carry on
day-to-day with chronic pain is utterly exhausting, and having the
hospital back in my life so regularly is hard to accept in many ways.
I'm 8.5 years on from first getting ill with the symptoms of ovarian
cancer and still it's a dominant feature in my life. But then I know how
lucky that makes me - many people diagnosed with ovarian cancer don't
get to go on and do 8.5 years of living.