April 26th. 2013. 1115pm
Eleven years ago tonight I was sleeping in a hospital in Melbourne, waiting for my first child to start the process of bring born. He was ten days overdue, so my obstetrician had given me some gel to induce labour at 830 pm. Ben went home to look after his parents, who were staying with us to look after our dogs. He didn't like the look of the trundle bed in my room.
I went to sleep around 930, and woke at about midnight with tummy pains. I went to the loo, twice, then realised I was having contractions. I called the nurse, who said to time the contractions. I called Ben, who said to call back when I was going to the labour room. I timed the contractions diligently, wondering when the nurse would come back. After thirty minutes, I called the nurse again. "My contractions are coming every two minutes, and lasting 90 seconds. If this is labour, I want an epidural. Now. No, don't worry about a wheelchair, I can walk to the labour ward."
I tried to call Ben while being wheeled upstairs, but he'd left the phone off the hook and had gone back to sleep. I was only 4cm dilated, and the baby was in distress. They stopped the contractions with a shot of ventolin, and I remembered to try Ben's mobile. He arrived thirty minutes later, and little David was born by emergency caesarean at 414am. It had taken that long for a theatre to become available. I saw him briefly, but didn't get to hold him. My BP had dropped very low, and I spent a couple of hours in recovery before I was returned to my room. David was wheeled in, crying his little heart out, but the nurse wouldn't let me hold him until she'd done something or other for me first. When I finally held him, he was red and exhausted from crying.
David's temperament is quite different from nathaniel's, a forceps delivery two and a half years later, who was laid on my chest and slept soundly for the first couple of hours in the air. I wonder increasingly if those very early experiences affected the level of anxiety in my boys, and in the way I have parented them. I know I couldn't bear to be parted from David when he was tiny, and he refused to sleep without me next to him until he was 8. Nathaniel has always been a better sleeper, and far less anxious about me leaving the home.
So it's ironic that I'm back in hospital on the eve of David's birthday. I was feeling well, which made me feel very happy, for most of today, and my bone pain had gone. Nathaniel helped me make David's birthday cake, and David helped me make a gooey chocolate slice. We watched penguins of Madagascar on DVD, the boys played games, I spoke to a friend, and didn't overdo things physically. I started to flag around five, when Ben came home, and I asked him to give me an endone, as my thighs were aching again. I went upstairs, meaning to go out to buy David's present, but suddenly felt unwell. My temperature was 37.7, and rose to 38.1 over the next thirty minutes. So we all came down to the hospital, and now I'm lying in a bed in the plaster room, receiving IV fluids and antibiotics.
My temperature has returned to normal, though I started shivering and shaking (rigours) after they needled my infusaport.
I'm feeling a bit better now, and I hope I'll be able to go home tomorrow for David's birthday. I don't think I'm neutropenic, I hope it's not the flu, and I hope it's the last time I have to come into hospital.
It seems that I need to be very careful not to jinx myself- before I was diagnosed, I told Ben how grateful I was that we hadn't had any major health scares. Today I wrote on Facebook that I was feeling great. Just bad luck I guess, though I understand how people throughout time have believed there must be some quixotic force who rules our fates.
Happy birthday, sweet, wonderful David. I'm so proud of you, I love you so much. I will do everything I can to make sure I'm here for you for many more years to cone.
A blog started in 2013 to inform family and friends about my treatment and progress for early breast cancer. Then I went and got two brain tumours,,both GBMs, completely unrelated to the breast cancer, so the blog continues.
Background and overview
I learnt more about the health system from being an inpatient than I had in 20 years of working as a neuropsychologist. I was unexpectedly diagnosed with two brain tumours on 4/9/13. They turned out to be grade IV Gliomas (glioblastoma multiforme (GBM)). After removal of the right parietal and left occipital tumours, I received the standard treatment under the Stupp protocol (combined Temozolamide (TMZ) and conformal radiotherapy 5 days/week for 6 weeks), but the TMZ had to be ceased after 5 weeks because I had started to develop pancytopenia, where more than one of my blood counts had begun to drop. By Christmas 2013, I had become anaemic and needed a couple of blood transfusions. I ended up in hospital for 3 weeks of the 2014 new year after experiencing my first seizure (suggestive of a right temporal lobe focus) on 31/12/13). They were so worried about my bone marrow, they did a biopsy. Luckily, it was all clear of any nasty disorders. It had just been suppressed by the TMZ My blood counts slowly returned to normal with daily injections of GCSF, which stimulate bone marrow function, for several months. For 17 months I was doing better each day, without any physical impairments or major cognitive problems A third brain tumour was found in the right temporal lobe on 2/1/15, and removed 6/1/15, only to reappear on 17/2/15 after I started to feel vague symptoms at the end of 2014. I had my 4th round of brain surgery on 1/3/15, followed by stereotaxic radio surgery of a residual, inoperable, tumour, on 17/4/15. I've been feeling like my old self again since that highly precise form of radiotherapy, and it feels fabulous.
My way of coping.
I choose to live in hope that everything will work out for the best. I've learnt that even though things are sometimes unpleasant, life and love go on forever. I put my faith in the life force that created and unites us all in love, across all time, space, and dimensions. I refuse to succumb to fear, which is an invention of our imaginations. There are an infinite number of things to fear, both in this world an in our imaginations, and most of them never eventuate. I choose not to dwell on them, and to focus instead on counting my many blessings, current and past, and to have faith and hope that if I look after the present moment, the future will look after itself.
If you're reading, and haven't been in touch, please don't be shy, send me a brief private message using the contact form on the right. It's nice to know who's out there. Blogging can leave me feeling a little isolated at times (I used to have recurrent dreams of being out on a limb over a canyon, or of starting to strip off in a crowded waiting room). Your emails are appreciated, although I can't necessarily answer all of them.