The weather continues to be perfect in Launceston, though we could do with some rain. The hydrangeas are getting a bit droopy and the seaside daisies are looking frazzled. Ironic that the rabbits ate the seaside daisies when I tried to grow them in Eltham, but they're like a weed here. Not that I want rabbits, mind. Just less strangling of the roses by those innocent-looking daisies.
My chemotherapy will be starting the week after next, they're giving my wound time to heal. It's also giving me time to get organized, filling in paperwork, getting our tax and salary packaging claim forms done, walking every day to boost my fitness, sleeping, spending time with the kids, a little retail therapy, there's still so much to do. I want to pack up my office at work, and make things more comprehensible to whoever they get to backfill my position while I'm on leave.
I've been into work a couple of times to say hello, and to get my leave forms in. It's so good to see people, and to be fussed over. I'm not used to being fussed over, but it's very comforting. I think I'd go mad if I couldn't see a variety of people each day - it's so good to be able to hear about events outside my own little world, to connect with people. It's very isolating, being at home with just Ben, Hannah (Ben's 88yo mum), David, and Nathaniel. A few people have said that they haven't called because they want to give me time to recover. It's actually easier for me to receive phone calls than to make them, even if I can't talk for very long. I do get tired sometimes, but I love hearing from people, and I hope they'll understand if my energy flags during the conversation. Making the time to call people is hard when there are countless tasks and family to occupy me in the home. Visitors are most welcome too, especially when chemo starts, as I may not be able to drive or get out as much as I am at present.
I'm feeling surprised and angry at how tired I still feel, 16 days after the surgery. My cording is painful but not too bad, my seroma keeps coming back, but should settle down soon, my pain is lessening.
I slept in until 1030 this morning, and could have slept longer if the boys hadn't been arguing in the room directly below. I slept again from 330 to 6, again woken by the boys. I only took my pain meds three times today, and have been managing well on one Endone and one panadeine forte. The panadeine has run out, so I'm hoping I'll cope with panadol instead tomorrow. I forgot to ask the surgeon for a new script when I saw her on Friday, still trying to get used to being a patient. I was also feeling guilty because I was telling her medical student about my seroma and how it doesn't hurt to drain it (I can't turn off my teacher inclinations), and she said they'd already seen someone with a seroma that day and she'd shown him how to drain it. I felt a bit foolish, and was reminded of all the patients I've seen who have been a bit difficult, some have had a sense of entitlement, others have been very matter-of-fact and dismissive, and it really struck me that it's a way of coping with an utterly shite-ful situation, a way of trying to maintain a feeling of control when your whole world seems to be out of your control. Not that it ever was, it's always just an illusion, everything is chaos, but we try to impart order and structure onto it to make it less frightening.
I laughed at myself the other day, when I was starting to pity myself and was getting angry over the way I've lost control of my body. I realized it was never under my control, it was just healthy(ish), and now it's not. Or, really, its healthy, only it has to be bombarded with chemicals and radiation to kill any errant tumor cells that will try to kill me if we don't kill them first.
If I try to hang onto the illusion of control I get a sense of panic as I watch the illusion dissolve into the infinite chaos of the universe, so I'll just laugh at it, say 'Riddikulus,' wave my wand and watch the boggart of my fears turn into Professor Snape dressed in drag on roller skates.
Problem with waiting and not keeping busy is having too much time to think.
Last night I was looking up Taxotere, the chemo drug they propose for me, once every three weeks. The drug product info is the usual stuff about properties, indications, contraindications, allergic reactions, side effects (common, uncommon, rare), but there was a lot of very unhelpful stuff on breast cancer networks. Horror stories about dry mouths, nausea, metallic taste, and one poor woman of 38 with stage 3b cancer whose teeth fell out. I'm not going to look at consumer stuff again, I don't need to hear the horror stories, I just need to plan on things to do for the 18 weeks of chemo. It doesn't affect everyone the same way, I'm doing the best I can to prepare myself to cope with it, cognitively, emotionally, physically, socially, practically.
To overcome the horror stories, I looked for "positive chemo stories" and found these helpful/amusing sites. They are the kind of thing I need.
http://www.essentialbaby.com.au/forums/lofiversion/index.php/t250868.html
http://breastcancer.about.com/od/generalsideeffects/tp/Things-To-Do-During-Chemo.htm
http://www.perennialnursery.com/forums/viewtopic.php?f=15&t=56757
http://www.beliefnet.com/Health/2006/02/Six-More-Good-Things-About-Chemotherapy.aspx
I'd better go to sleep now. Please don't worry about me. Writing this blog allows me to update family and friends, but it's not a replacement for personal contact. Please feel free to call, visit, SMS, or email me, or just write in the comments field for these blog posts. It means a lot to me, to hear from the people I love, and that's just about everyone! It gives me strength when I'm feeling scared about the treatments and changes ahead, and helps stop me from feeling lonely.
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.
