My first chemo appointment was scheduled for 815 on Tuesday last week. They say it's good for people to keep track of how they respond, to help with planning future treatments. So here goes...
I felt pretty anxious about having chemo. All the knowledge and rationalization in the world doesn't overcome a very primitive (& realistic) fear about letting someone put poisonous chemicals into your body.
I had woken at 430am, but decided to go back to sleep until David was sure to wake me at 630. He always does, always has. I dozed, and dreamt that I was late for my chemo. I woke up in that dream and dreamt that I was really late for my chemo, that someone was telling me it was 930am. I forced my eyes open to find the kids sleeping either side of me, and David's watch showing the time as 718. Damn! It's hard to get everyone ready for school on a normal day if we get up at 7, 720 was really going to be a struggle.
The initial plan was for mum to take the boys to school, and Ben to take me for my 815 appointment. The boys were anxious too, so I suggested mum take me and Ben take them, but with our chaotic, rushed start to the day, the kids were getting more anxious. In the end, Ben decided to let them have the day at home, so they could see that I would be okay. So mum stayed home with the boys and Hannah, and Ben took me to the Holman Clinic. All good so far.
At the Holman Clinic I was the first person in the waiting room. All good. I sent Ben off to get me a chai latte (I don't enjoy even Stella's wonderful coffee since I was diagnosed), and a bircher museli (my regular work breakfast). A chirpy nurse called Fiona came to escort me to the chemo room, and my friend Brooke dropped by, making sure she didn't spend too long in the chairs in case they tried to infuse here again too (she'd been treated there a few years ago and has been a constant source of inspiration to me, wonderful woman!). Ben came back, they gave me a premed tablet to help with the nausea, and then they set me up for my first infusion of fluids and anti emetics. Despite having a local anesthetic at my infusaport, it stung when they accessed it!
Amazing how anxiety heightens pain... I'm usually fine with needles and blood tests, yet I found myself in tears when bloods were taken the day before, and it felt like there was stinging under the skin when the initial fluids were going into the infusaport. Chemo nurse Fiona had told me to let them know if there was any discomfort, as it's important to be sure the drugs are going into the vein, and not under the skin. So I told her, she and the doctor had a look at me, and booked me in for an Xray at 1130, where they would inject some dye to confirm where the port was emptying. This gave us an hour and a half to go home, check on the boys, run some errands in town (including getting my new multifocals, another sign of age!), eat some bircher museli (they hadnt had any at 830) and then go for the Xray.
There was a long wait for the Xray, but at least I knew the radiologist (the father of one of David's friends, who gave a brilliant session on neuroimaging for neuropsychs at our conference last year). The Xray showed the dye pumping nicely where it should, so I was reassured that the chemo wasn't going to end up in the wrong place. A kind radiology nurse patted my hand and told me that things are never straightforward for people who work in hospitals, they always seem to have more complications than other people, but not to worry, just keep asking questions, they'd look after me, everything would be ok. I felt paradoxically reassured by this interaction. Her bedside manner and kindness was calming, even though her words seemed to be harbingers of doom!
So, 5 hours after jolting out of sleep, I finally started the chemo. Drank 2-3 liters of water over the time, as per my pre-reading that recommends 2-3 litres per day for the first two days. Ben told me to stop drinking so much, I think he thought it was excessive. And he was sick of taking me to the loo ;)
Felt very tired during chemo, but didn't want to sleep because the nurses were giving me lots of useful info. Ben had a nice time reading something or other, and we were home around 230. I felt okay, so I dispensed Hannan's medications for the next two weeks (irritating necessity brought about by overly rigid pharmacist who refuses to put fish oil, panadol osteo, Vit D, Caltrate and Ferrograd C into the Webster packs because you're "not allowed" to put more than 7 meds in one). Did a little bit of preparation for school lunches, a little paperwork, and finally lay down for a nap at 5ish. Immediately felt like crap. A bit like you feel when you're getting the flu - achy all over, a bit dizzy, needed to go to the toilet, didn't feel like drinking. Not nauseous, just unwell. I tried to sleep, but kept waking up with a sense of malaise. I didn't want to make a fuss, but they'd said to go back to hospital if I felt unwell. I was also feeling scared. So I asked Ben to take me to the hospital.
Luckily they fast-track chemo patients through emergency (to avoid contact with infectious patients) and I was put into a quiet area. They said I was dehydrated (!!!), and I ended up being admitted overnight, given 3 litres of IV fluids and anti-emetics. I rested at home on Wednesday, and even managed an evening walk.
Thursday was ok, Mum took me to the surgeon at noon, and 500 ml was drained from my seroma. It was almost flat on that side again, and it's been filling up only slowly since then.
Friday was ok too, if going to the fifth funeral in one year is okay. Dear old uncle Brian had a lovely send-off, and there were lots of cousins and other family there. I pigged out on Finney's little chocolate eclairs, they were fantastic! Just the kind of high-calorie food another wise Fiona says I need. But I didn't feel up to staying, it was good to go and to see people, I just couldn't get caught up in the gathering.
Ben took me to school-mate Fiona's place, and we went for a walk around the school before she took us to the boys' swimming lesson at 330. Friday was my most embarrassing day so far - two episodes of urinary incontinence - though nobody knew until now. (i think i wrote a warning about warts and all about a month ago). I met another friend at swimming, a physiotherapist, and she talked about extruser muscles and pelvic floors and all sorts of things. I didn't have a UTI (urinary tract infection), and it hasn't recurred since, but it was bewildering to be walking along and suddenly wetting myself. Aren't your glad I shared that?
Saturday was utter crap. I had severe abdominal pains, and worked out that I hadn't had a proper BM since wednesday. I never knew constipation could be so painful. It was as bad as labour pains, only my whole abdomen was gripped in a crampy spasm of pain. All day. Only relieved by lying flat with my knees elevated. And getting started on movicol. I was nearly going to go to the hospital again, but decided to enjoy the beautiful day with a walk at Seaport and a chance to eat. Mud's confit chicken was delicious, as usual, and the wonders of movicol, combined with walking and the gastro-colonic reflex made me feel better - when we got home.
I must have looked a sight walking back to the car, one arm around Ben's shoulder, the other clutched across my guts. Two young inebriates, dressed for a party in reflective shades, shorts, and construction hats, came up and asked me if I'd had too much beef vindaloo. I said 'no, chemotherapy', three times before they stopped going on about vindaloo. One of them said sorry, then his mate warned me that too much vindaloo is bad too.
I slept well Saturday night, despite frequent trips to the bathroom, and felt proud of myself for not going to hospital with constipation.
Sunday ( day 5) I was exhausted. I slept all morning, had little appetite, moved downstairs to a cooler bedroom, decided to have a bath because my thighs were aching, took my temperature (38), went to hospital. Had some tests, a litre of fluids, antibiotics, medicine for oral thrush (great!), instructions to gargle salt water frequently, drink fluids, take anti-emetics, wean self slowly off endone and panadeine forte, and have my bloods done again on day 8 - the nadir when my white cell count will be lowest is yet to come. What fun!
I am developing strong feelings of affection for my medical oncologist. He introduced me to my new favourite medicine - Movicol - and he came to see me in emergency yesterday. He is kind and sympathetic, and very supportive. He's giving me lots of practical advice and reassurance, and I think I'll get through okay with him looking after me. It's also great to have the love and support of so many other people. I'll get through it, though it isn't something I hoped for in my life.
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.
