I spent most of last week in hospital. I was muddle-headed on Monday, accidentally taking my lunch-time medications twice, and was worried that I'd doubled up on some medications in the webster pack I'd assembled for myself of prescription and supplementary medications. I pulled out a master list (18 tablets and capsules to take each morning) and checked each cell - sure enough, there were sometimes 10 Vitamin D tablets instead of 5, and a couple of times there were 2 Tamoxifen tablets instead of 1). I wondered how people with worse cognition than mine managed their medications, and was glad that the pharmacist was coming the next day to do a home medications review, and to look after dispensing my meds and supplements into a webster pack for me, it was so overwhelming.
On Tuesday, I felt horribly nauseous and had diarrhoea. Mum was taking me to my radiotherapy, but I texted ahead to see if I should go to emergency, I felt so awful. For the first time I could understand why some people refuse to continue with chemotherapy. Ben met us at the clinic. My rad onc said to come to the Holman Clinic, they could manage me quicker there. I had my radiation, and then was taken to a clinic room to lie down. I refused to enter the room because it had a strong and awful metallic smell, that only I could smell. The smell also permeated my mouth. I went into my rad onc's room, which was vacant, and the smell wasn't so bad, but it was still there. I wondered if I was having an aura, which is a warning people with epilepsy sometimes get before having a seizure. Auras can come like a funny taste or a smell, and I was getting both. My rad onc said the nausea was possibly due to cerebral oedema, so he sent me up for a CT brain, which scared the hell out of me, immediately thinking the worst and not wanting to discover that my tumours had been regrowing. After the CT, I asked the poor radiographer if she'd really scanned me, or if she was lying - I remember her putting the cannula in my orbital fossa for the contrast, I remember the hotness and metallic tastes of the iodine, but I don't remember having the scan - CT's are so silent compared to MRIs. I felt awful for being so paranoid, but I was so confused and so scared and I wanted to know my scans were okay. Back at the clinic, the good news was that there was no significant oedema or sign of tumour regrowth. I was told increase my dexamethasone back to 4 mg three times a day, and to increase my dose of sodium valproate.
Mum took me home where I rested, I think, and she left when Ben brought the boys home from school after 3. I was lying in bed when I felt my face begin to twitch on the left hand side, then my left arm began to twitch. I managed to call out to Ben, luckily he heard, and the last thing I remember was him calling an ambulance after telling David to run next door to get the neighbour to come and sit with him and Nathaniel while he went to the hospital. Next thing I knew, the ambulance man was there, Ben was telling him my left side had been jerking, my right side had been rigid, and that my face had started to turn blue during the seizure. He said I had been unconscious for about 2 minutes.
A bumpy stretcher-ride up our back staircase later, and I was in the ambulance on my way to the LGH. I can't remember much about the ride, or much about anything from the days that followed. I was in from Tuesday until Friday, and was pretty sedated and confused for much of the time. I lost my appetite, had bouts of nausea, and was surprised to sleep well despite the increased dexamethasone. I asked to see the neurologist, who said to increase my dose of Epilum (sodium valproate) from 200 tds to 700 sustained release BD. It turns out that valproate can cause nausea and sedation, which settles after a month or so. Great.
I've gotten pretty good at accepting the things I cannot change, having courage to change the things I can, and finding the serenity to know the difference, but I hate feeling nauseous and sedated, like I do right now. It's really awful to feel like your guts are churning and that you might dry retch at any moment. It's also unpleasant to feel physically drained and mentally depleted. I feel like I'm having to push my clear thoughts through porridge in a sieve.
I spent Saturday night in emergency after spiking a temperature of 38 that evening. My full blood count was okay, and I was allowed to return home this morning, bruised from the attempt to cannulate the back of my right hand (the vein tissued again), and wondering if it's a good idea to drive to Hobart on Tuesday to see my neurosurgeon for the scheduled review. We were going to drive down after RT on Tuesday and stay overnight, doing the return 2.5 hour drive on Wednesday. Maybe we'll call him tomorrow and see.
I'd better sleep now. Ben is out the back assembling the new trampoline with the boys and our visitors, and last Tuesday was a important lesson to me in the importance of resting to avoid lowering my seizure threshold through fatigue. I'd been feeling so alert, so good; I'd been doing maybe too much around the house, sorting things, having fun. But I hadn't been resting enough, and it was just a seizure waiting to happen. Scar tissue from surgery can cause seizures, so the important thing is to not have another one. I need to be more patient, more gentle with myself, and to give in and rest more often.
I'm so glad I have a roster of friends and family coming to be my companion for all but the next week. A former student is here with her 7yo daughter for the weekend, and it's lovely to have another woman in the house to help with sorting the boys' clothes, doing the laundry, making tea, and just talk to. We had a fantastic lunch at Fresh, a vegetarian restaurant in Charles St, followed by a pleasant stroll and sit in Princess' Park, opposite, where the kids played hide and seek while we admired the old conifers and rhododendrons.
It's not going to be easy, but I can make it through this. The prayers and supports of so many people are behind me, and I want to do so much good when my treatment is over. I will be able to use my experience as a patient with my knowledge as a neuropsychologist to improve education, understanding and supports for patients and their families. I've wanted to help pepople all my life, andto understand brain disorders since I was maybe 12 - I didn't mean to go to this extent to do it, but if it makes a difference, It will be worth it..
Thanks for following this topsy-turvy adventure, and for the emails, cards, letters, and gifts people have sent. It's nice to be in your thoughts, and you're in mine too. I'd far rather be healthy and fancy-free than going through this, but they say that things like this are sent to make us stronger. It's certainly been transformative for me, and I hope to live many decades to be able to use this experience, and my knowledge, to help improve things for others.
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.
