I'm writing from the oncology ward at Launceston General Hospital, 23 hours after I came here with a fever. I've been on IV antibiotics, and will be in here for 3 or 4 days until my white cells rise enough for me to go home on oral antibiotics.
I was tired on the weekend, which I attributed to staying up past midnight on friday reading the latest Phryne Fisher novel. It's frivolous and entertaining, and I've always found it hard to put down a good book. I only wish the ABC would make a range of clothes, hats, accesories and shoes available based on the tv series. I lust after her wardrobe very badly.
I went for a half-hour walk with David on Saturday, he wanted to see how long it would take to walk to his school - we made it as far as City Park, where Ben and Nathaniel picked us up. School would probably be another 15-20 minutes - it would make us very fit to walk there each day, but I was pooped. Walking down steep hills uses muscles that aren't often challenged :) I slept solidly for a couple of hours on Saturday afternoon, with a visit from a dear friend who lives in Hobart, and I slept well again from 1030 to 530 on saturday night. David had a birthday party on Saturday, and came home tired and grumpy, complaining of a sore throat. He came and slept with me around 2 am, as he often does. I've never been great at sending him back to his bed, and I was so tired I just hoped I wouldn't catch anything from him.
Sunday morning was spent taking a walk with a friend from work, who had breast cancer 4 years ago. She told me that it's not advised to shave your head when the hair starts falling out, as the follicles aren't pushing new hair through, and the hair can get stuck under the skin. The thought of a scalp with ingrown hairs doesn't appeal to me, so I'll just get it clipped really short when it starts to fall out.
I slept for 2 or 3 hours on Sunday afternoon, and still felt tired, but I get so hungry, I needed to get up and cook dinner. The boys, who were really well-behaved all weekend, were very noisy and boisterous. I feel sad that they have missed out on going to the beach and having much outdoor fun this summer. They're happy to play inside, but they have so much energy to burn, I need them to get tired. I'll see if I can arrange for them to spend time with their friends each weekend. I don't have the energy to take them out, and Ben always seems to have work to do when he's at home. Anyway, the noise got a little too much in the house, so I took Ginny for a walk in the park, enjoying the rainbow and the smattering of rain that started to fall. Back at home I felt a bit hot. Our Braun ear thermometer said 38.2, 38.4, 37.6. It's so unreliable, seems to give a 0.6 range in measures from one person. Our other thermometer said my temperature was 37.5, +/- 0.1. Then I stood up to take the boys to bed at 830, and started shivering, even though I felt hot. I called my oncologist, who said I should go to emergency.
The thermometer at the triage desk said my temp was 37.1, but inside emergency it was 38.7. I felt awful - shivery, hot and cold, achy all over. My throat was sore, I was getting an earache, and my sinuses started to fill up. It took 1.5 hours before they started the IV antibiotics, the poor boys were falling asleep on the floor in my cubicle, and asking if they could stay home tomorrow.
I had a pretty lousy night. My temperature got up to 39.2, my blood pressure dropped as low as 86/53, and has been up and down all day. It goes up when I get IV fluids, then down again when the fluids stop. I feel drained and dizzy when it's low, though I've been okay to walk to the bathroom (the fluids seem to go straight to my bladder). I remember my BP dropping as low as 50 over something when I was having my kids, I think because I'd had epidurals for both. It's a strange feeling, you lack the energy to be worried about having such a low BP, though you know it's not good. I finally managed to sleep around 330 am, I was afraid to go to sleep for a while, my breathing was shallow and i was afraid that I'd die if i went to sleep (totally irrational, but very real). I also found it hard to sleep because I was waiting for the medical consultant to see me, as promised. I'm not sure if he did come, or if I dreamt that he did. I remember someone coming and saying they had read my file and didn't need to examine me, saying that I wouldn't be able to pronounce his name, so I looked at his name badge and asked if Sukhdeep was pronounced a little like Sundeep. I guess it must have happened, but it felt like a dream.
My surgeon drained my seroma this morning, 200ml of clear fluid. It had swollen up yesterday and was red and painful last night, this became less with the antibiotics. They took a sample from my seroma, and have done blood cultures and tested me for MRSA, giving me some vancomycin just in case. One of the lovely old physicians here speculates that most of the staff probably have MRSA, so it will be interesting to see if I do. I hope not! I don't need it. I'm still neutropenic, and my liver functions are a little "deranged", possibly due to the chemo. I might need to have a liver ultrasound and sinus CT if they don't improve. What joy! At least it won't involve more injections, I'm beginning to feel like a pin cushion, and they can't access all the lovely veins on my left side because of the risk of lymphedema. The back of my hand is tender from being cannulated twice in a week, and I'm finding needles quite painful. They've accessed my infusaport now, and it's not uncomfortable, after an initial stinging sensation when they needled it.
It's now 845, my temperature has dropped below 38, my bp is better, and I'm getting tired again. It was lovely to see my boys for a brief visit tonight. They didn't like wearing masks and not being able to hug me, and I really wanted to hug them. We just had to satisfied with holding hands. I miss them so much, I wish I wasn't sick, I hate being away from them. But I know this is the best place to be, and they'll cope without me. And hopefully I'll sail through the rest of my treatment. Though I now know why some people refuse to persist with chemotherapy.
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.
