Cycle 6, day11 (at home, recovering)

Saturday 29 June, 2013. 813pm

That's half the year nearly gone. Five months since my mastectomy.  Eleven days since my last dose of chemo, nine days until my radiation starts, daily (Monday-Friday) for four and a half weeks. Then Tamoxifen tablets every day for the next ten years. Early menopause, here I come (though I suspect it's already started, hot flushes aren't fun).

I feel utterly drained of energy. My legs hurt when I climb the stairs, and I had to pull myself up by the railing today after I walked Ginny down to the park, back up the hill, and home. It's a strange thing when people tell me I look well. Looks can be deceiving. I feel like one of those frail old people you see, struggling to walk unassisted. It's going to take a while to get fit again. I get fatigued just taking towels out of the linen cupboard. (good motivation to get very fit after all this is over, I don't want to be a feeble aged person).

I had a very deep sleep today, one of the ones where you wake up and your body feels like lead, and it takes effort to move it, and all your willpower to get out of bed. The process might have taken half an hour, but I was dehydrated and needed to get to the loo, before the combined sluicing effects of lactulose and augmentin duo created a catastrophe. I've started taking Flagyl tonight, because my temperature has been in the 37 - 37.7 range, and Ben thinks Flagyl is stronger against anaerobes than augmentin. Handy to have a doctor in the house, though I think he'd prefer not to have to worry about my health. I'm hoping my temperature stays down, I thought I was leaving hospital for good when I walked out on Thursday.

Ginny and I met a new dog in  the park today, a sweet little silky Maltese terrier called Molly, who wasn't at all fussed by Ginny's huge black furry frame. Ginny licked her ear a few times, which was very cute. Molly's owner was pleasantly chatty, and it turned out that she had breast cancer 10 years ago. She hasn't had a reconstruction, and was surprised to hear that not many people have them even these days (it's 15- 20%, less in regional and rural areas). She said she gets some back and shoulder discomfort from being lopsided, but is quite happy with a silicone prothesis that she can use for swimming and everyday. I asked if she'd taken tamoxifen, she said she had for a couple of years, but the menopausal side-effects were bothersome. She was kind and sympathetic, and said it's hard for people to understand what it's like to go through treatment for cancer. I know I didn't, and I wasn't particularly eager to know, it felt like it might be tempting fate...

While it was nice to meet someone who has made it through breast cancer treatment and survived ten years, I felt rather overwhelmed. I just can't imagine what it will be like to feel normal again. I don't know what I will want to do with my life, other than give my children more time and attention than I have before. 

I'm bothered by David's (year 5) homework at the moment. His teacher likes to give them a choice from a selection of six topic areas to do over the term, and he has to finish three by Wednesday. We went out for lunch today to get one project out of the way ("adventure": try four foods you've never eaten before and write about the experience). Ben helped him finish the "democracy" project last week, but he still needs to do two challenges for one project, and start and finish another task. David would rather be doing maths problems each night, like the other year five classes, as would some of the other kids in his class. One of the other mums agrees with me that homework at this age should be simple, measurable, achievable, realistic, and time-based (SMART - pity I didn't invent the concept), so that the kids can get into the routine of doing homework each night and experience success with it. Another mum tells me that the other year 5 classes might be moving towards it because "it fits with the school's ideals" - as a psychologist, I hate it when ideals are used to justify educational experiments. If a kid is given homework that's too nebulous and easy to put off, it's going to be hard for them to feel like they can ever do a good job with it. I wouldn't mind if they were given one project a term to do, plus daily small tasks, but only doing small projects in nine weeks is counterproductive, especially when my son has my propensity for procrastination. I just wish I didn't have to worry about this at the moment.

It's strange though, (watching skeletal pirates fighting ruthlessly on Pirates of the Caribbean, then giving up when they become mortal again ) we're all here for such a short time, we worry so much about little things - the colour of the paint, our hair, our weight, the future. But when everything is stripped away, the thing that matters most to me is the quality of my relationship with others, and an enormous desire for everyone to be kind to each other. I don't know if I'll be successful in focusing on the important things and being calm about the rest after all this is over, and god knows I still get frustrated with the kids being kids, and with Ben being stroppy, but I hope I'll have the energy and focus to be more patient with and compassionate towards others, and kinder towards myself. Though i don't think I'll be able to stop worrying about my children, and hoping for the best for them.

Risk of breast cancer

An interesting article from the UK's Daily Mail-  

not a publication I recommend for unbiased reporting of social issues, but they have some excellent health and science features

http://www.dailymail.co.uk/health/article-2347665/Whats-YOUR-risk-getting-breast-cancer-What-experts-say-save-life.html

Laughing at pain

Wednesday 26 June, 3pm

I've just had my infusaport removed - and have been allowed to keep it. I think the kids will find it interesting - it looks like something you'd see hovering over alien surfaces on Doctor Who. This little bit of titanium has been attached under my skin for the last six months, making it uncomfortable to lie on my right side.  The tail was inserted in my subclavian vein, allowing toxic chemicals, IV fluids, and antibiotics to go in, and blood to come out. At some stage a bacillus decided to infect it, and since my chemo is over now, I don't need it any more. There has been a steady procession of nurses wanting to look at it. I'm told they can stay in for five years, just needing to be flushed every 6 weeks. If I get cancer again, god forbid, they can put a second one in, but not a third one. So I better not get cancer again!

it was removed under local anaesthetic (which should be called effing stinging anaesthetic out of honesty). Conjuring up my happy place didn't help reduce the sting, but wriggling my toes, flexing my legs (which were following a primal urge to flee), saying ouch, and squeezing the nurses hand did help. A bit. It was not quite as painful as childbirth, severe constipation, or a perianal fissure, but it did hurt. The only way I coped with it was through knowing it would stop me feeling my scar being spliced open. And the local was over quickly (unlike a certain fissure which is being very annoying indeed).

Infected port

8pm, Tuesday 25th of June

And my run of good luck continues.

I'm still in hospital, and the pathology lab just called the ward to say that they've grown a gram-positive organism from my port. So the nurse had just de-needled my port, and I'll have to have a cannula put in my arm for my IV antibiotics. Ouch! More bloody needles (forgive the pun). It's much more comfortable getting infusions through the port, and the back of my hand is still resentful from the last time they put a cannula there and the infusions "tissues" (leaked out of the vein into the surrounding skin. Very ouchy!)

It takes 48 hours for final results from blood cultures to come back from the lab. The cultures they took on Saturday night were negative, as far as I know. Though they were from my arm, not the port (the nurse couldn't draw blood from my port on Saturday night or Sunday morning). It's the cultures they took last night, 24 hours ago, that have grown something. Probably a surface contaminant again. The nurse said they don't want me to end up in ICU after getting a septic shower, though I pointed out that I've had IV ABs and fluids through it for the last 24 hours without a problem (poor nurse, I was giving him a hard time). Still, the needle needed to come out tomorrow anyway, as they only leave them in for a week. So I won't complain, I'll just hope this is the last complication. And that I can get my infusaport  removed before I start radiation. It needs to be flushed every 6 weeks. I'm not keen to have it flushed if it's infected. But I'm not sure I can have it removed while I'm having radiation. 

No point worrying tonight. If my neutrophils have improved enough they might let me go home tomorrow. Though they might wait on the pathology results - the lab will identify the organism and determine drug sensitivities. On past experience that can take longer than 48 hours.

Time to sleep. I've had some amazing dreams while I've been in hospital. The first night I dreamt that I was sleeping on two very squashed and unhealthy-looking people who were stacked on beds below mine. I wanted to help them, but couldn't lift my bed up. Last night I dreamt that I took my kids for a play at a place with a pool, all the parents went for a swim but someone tidied up their clothes and I couldn't find mine - I wasn't starkers, but I felt very exposed. Then I dreamt visitors were at mum and dad's front door, and I couldn't find a thing to wear - there were lots of clothes, but none were mine, or at least not the ones I wanted to wear. There were lots of clothes that I remembered and had discarded over the years, but nothing suitable to put on. A metaphor for my life? Feeling exposed, stripped bare, unsure of what to wear as I step forward to meet the future? The good thing about both dreams last night was the feeling that it didn't matter what I wore, that what I had on was fine, even though I was feeling peculiarly exposed and in unfamiliar apparel, that others didn't care what I wore, even though I felt changed and uncomfortable.

A right royal pain in the ...

Monday 24 June, 912pm

I'm on my last cycle of chemo. Yay! Cheers from the support gallery, over 27 likes to my last blog link on Facebook when I said I was going to beat this thing.

It's great to have the support and encouragement of family and friends, I'm touched that people are still with me after what has seemed like a boring and dispiriting marathon, which started just over six months ago when my husband rang to say the surgeon had been trying to contact me because there was a lump on my ultrasound.

I'm feeling like my life has been turned upside down by the events of this year. The contents of my life are lying all over the floor, the garbage bag that held them is empty, and I need to think carefully about what I want to put back in. There's so much I used to carry around in my life, but not everything was of equal importance. Being completely depleted of energy helps me to prioritize the things that I want to carry forward with me, and they're people, not possessions. My wonderful children, my family, my friends, the people who I love and with whom I want to grow old disgracefully. Nothing much else matters. I want to improve the health and nutrition of my little family so we can all be healthy together, and I want to get rid of the clutter of too many things from our lives. Living in Tasmania helps to curb the temptation to shop as a recreational activity, but we still have too much stuff left from our too big house in Melbourne.

I mustn't get ahead of myself though.

Despite my best efforts and intentions, I'm back in hospital with febrile neutropenia, getting IV antibiotics. 

I thought I'd try something different after the previous cycle of chemo, when I went out with friends on the Saturday, spent saturday night in emergency after getting a fever, went home on sunday, developed rigours, and went back to emergency where they discovered my white cells had fallen rapidly in 24hours, so I was in for three more nights. This time, I thought, I'll rest on the Saturday after chemo and support my immune system. I spent the day in bed, sleeping. My temperature still went up. 

Ok, I thought, I'll not get angry about being admitted. I'll rest and try to get better. My CRP (a measure of infection) was ok, as it had been the time before, but I felt absolutely lousy. It didn't help that a locum consultant had a jocular manner that made me feel trivialized, he hadn't written my drug chart 5 hours after I got there, I had to ask a nurse to get him to write me up for some pain relief. I felt unwell and anxious when my consultant came to see me at lunch time on Sunday, and I wasn't keen to go home, because I was feeling worse than I had on the previous round, and because my neutrophils dropped dramatically on the Sunday the last time.  He agreed to let me stay in emergency (there weren't any beds on the ward), and I slept all day in the plaster room, a small, cold room with a door, away from most of the hubbub of the emergency department. I felt a lot better this morning, but my neutrophils had dropped to 0.1 again. I wanted to go home, and was given strict instructions to return if my temperature rose again. Ben embarrassed me by telling the registrar, resident, and medical student that I had a slight bedsore in my natal cleft (too much time lying on plastic mattresses), and that I'd been constipated, but they didn't offer to examine me (not that I wanted them to, I just wanted to go home, have a bath, and deal with my discomfort myself).

I had a lovely hot bath at home, lunch with Ben, and a sleep in my blissfully comfortable bed. Then I took my temperature: 38.1.  Back to hospital, though this time I came straight to the oncology ward, the next door neighbor looked after the boys. Yet again Ben insisted on talking about my painful bottom, and this time I didn't mind, as I realised it had stopped me sleeping the night before, and was causing me considerable pain and fear of going to the toilet (imagine a pain ten times worse than that caused by the hottest curry you've ever eaten, that doesn't go away).

After consulting Dr Google, I now know a lot more about bottom pain. Piles or hemorrhoids are common, and normal, unless they get inflamed or thrombosed, where a blot clot forms - This needs attention. Anal fissures are also common, and can be chronic or acute - they are a little tear in the muscle. They can be caused by trauma, such as passing a large hard stool. They can heal by themselves, but can also go into spasm, which restricts the blood supply and makes healing more difficult. There are various treatments available to help. People who have them are often fearful of going to the toilet, something I've been experiencing throughout chemo whenever I've become constipated. The problem with having one while neutropenic is that it can be a source of infection. So I'm on a trifecta of broad-spectrum antibiotics, lactulose,  and have been given some lignocaine gel to use as a muscle relaxant. 

I'm still afraid of going to the loo, but glad I fessed up to the pain. It made it very hard to sleep last night, and the colorectal surgeon who came to see me tonight treated it so matter-of-factly that I'm now embarrassed about being embarrassed about it. Though I can still relate to the story of the bush walker who died after a snake bit her bottom, because she was too ashamed to tell her companions.

One thing we all need to get better at is not being embarrassed by our bodies, to ask questions, to seek help, and not worry what the doctor will think of us. If we don't ask or tell about troublesome things, we might end up much worse than embarrassed. Sometimes, not asking the right questions about our bodies can be mortifying. Literally.

Taxotere, last cycle, day 3

641pm

I'm lying in bed, feeling puffed and wrung out, which is one step worse than worn out.

I rested today, but didn't get to have the nap that I needed, and I'm suffering for it.

My plan is to try and avoid hospital through adequate rest, hydration, and nutrition. I've drunk nearly 2litres of water today, plus four milk milos, pear juice, and a chamomile tea. Despite all that, I haven't been running to the loo very much, this drug seems to cause fluid retention, so my face is puffing up a bit.

I was feeling dizzy earlier, lying down helps. I still have a problem with resisting rest, I need to calm my mind.

The new breast cancer nurse gave me some info on breast protheses and reconstruction on Wednesday. I read it today and threw it across the room. I'm not ready to think about the options just now. I'm quite happy to be lopsided, and I'm not aware of any greater discomfort on my right side from the weight of my remaining breast. I can hide my asymmetry under scarves and cardigans, but I frankly don't give a damn if I offend anyone by my lack of symmetry. Although I admire the aesthetic and function  of breasts, I hate the traitorous bastards and sometimes wish I had never had them.

There are a range of external protheses available, but they're not recommended until 4-6 weeks after radiotherapy, which will finish for me in mid August. The thought of going to be fitted for a prosthesis and a bra to accommodate it doesn't appeal to me at all. Nor does the thought of breast reconstruction. More surgery, more pain, more recovery, more potential complications.

I suppose I might change my mind over time, at the moment it's too much information, too soon. I don't need to make a decision for ages, I just need to get through this round without sinking as low as I did last time.

One step, one moment, one thought at a time. That's how I'll get through. Time to meditate.

One more cycle to go

Tuesday 18th June, 918pm

I have my last cycle of chemo tomorrow, something I'm anticipating with a mixture of relief and trepidation. 

I have been feeling exhausted for most of this cycle, with only a few odd days of feeling anything like normal. It's as if some alien device has drained all the energy from my body, or as if I'd been prematurely aged. I have energy and fitness of an unfit octogenarian, and it's a struggle to make it up the gentle steps in our park and to walk up our front path. I had a blissful sleep this afternoon, one that I didn't want to wake up from, only I needed to get dinner ready. It was one of our more healthy meals in recent weeks: chicken korma (from last friday's freezer spree) carrots, peas, corn, and fresh bread. Followed by watermelon. There's been too much reliance on takeaways and party pies lately, but I just haven't had the energy to prepare fresh food.

At least I still seem to have my brain. It's the one part of me that isn't completely kaput. I can't multitask any more, I do fatigue easily, but I can still read, understand, and synthesize a wide variety of texts, and I haven't lost my curiosity, so that's good. There is some research suggesting a loss of white matter volume in women after chemotherapy for breast cancer, but I'm hoping it won't affect me, or if it does, that there was a little spare white matter in this big head of mine...

As chemo comes to an end, I'm feeling grateful for all the things my body used to do that I took for granted. My eyelashes used to prevent the shower water from getting into my eyes. My hair used to keep my head and neck toasty warm. My legs used to be able to walk quickly and strongly for hours. My arms used to allow me to sleep on my side without pain. My skin never used to dry out quickly in response to dehydration. My appetite rarely deserted me. My taste buds delighted in a wide variety of foods. My gut was never sluggish in processing things. My left breast managed to keep a 7cm stage2 invasive ductal carcinoma from invading my lymph nodes or the rest of my body. It's been a pretty good body, even though I haven't looked after it as well as I should have, out of misplaced self-loathing for not having great legs, for being chubby as a child, for not being one of the "pretty" girls at school, for the teasing about my imperfect body in boarding school (surprising there weren't more eating disorders there). I am determined to take better care of my body from now onwards, for as long as my soul needs it for this earthly incarnation. Without it, I'd miss out on this wonderful life and all the dear people in this beautiful world.

I had my radiation planning session yesterday. Had to strip off my upper clothes and put on a lovely gown that opened at the front, so that I could lie in position, arms over head, on a CT scanned for them to mark my chest and take CTs to check where my heart and lungs were in relation to the mastectomy. They used a wax pencil to mark the midline, around my scar, and other areas on  my chest and side. Then I got my first and last tattoos, five single ink dots, two in the midline, three on the side. The one over my sternum stung a lot, and I was reminded of the heavily tattooed nurse who told me that tattoos hurt most over bony areas. The tatt over the diaphragm hurt a little, one under my arm hurt enough to make me kick my leg like a dog having its back scratched (but not so pleasurably!), but the last two, near my mastectomy scar on the side, hardy hurt at all. The advantages of sensory loss!

My medical oncologist was concerned that I'd become neutropenic so quickly after the last dose of chemo. He asked the infectious diseases consultant if I should take prophylactic antibiotics, and they said no. So I just need to be ready to go in to hospital on the weekend. Again.

 I've lost count of my admissions. Was it three in the first cycle, none in the second, and one in each of the subsequent cycles? So at least 6 admissions, with two episodes of febrile neutropenia, and missing out on David's birthday and mothers day. It's been disappointing, but my prognosis is good. I had an early tumour, it hadn't spread, the surgical margins were good, and the only reason I'm having radiotherapy in 4 weeks time is because of the size of it. The chemo should have killed any cancer cells that escaped to other parts of my body, and the radiation will blast any cells that stayed in the general location. Then I'll be on Tamoxifen for at least 10 years, to further suppress any possible residual cancer cells.

I was reading a breast cancer newsletter tonight, and am still in two minds about having a reconstruction. I'm told that the recurrence risk for the second breast is low, but I don't want to have to live with that fear for the rest of my life. Having chemotherapy once has been plenty for me. If I have the other breast removed, but not reconstructed, then the two sides might not heal with an equal profile, so it might be better to get a bilateral reconstruction, though I don't like the idea of further surgery and recovery, or the need to have them replaced every 8-10 years. 

There was a story in the newsletter about a woman who had breast cancer who refused to have chemotherapy because she hadn't been ill, and didn't want to be ill from chemo. She said the tumour had been removed, and that was all the treatment she wanted. I hope for her sake that it was a low-grade tumour that was caught early. Having seen relatives die horribly from cancer that spread after surgery but no chemotherapy, I worry about the ability of cancer cells to spread to other parts of the body. In my case, the chance of recurrence after five years with no chemo was estimated to by 50%, or one in two.  Not good odds at all. Having the chemo I've had reduces the recurrence risk to 5%. One in twenty isn't great, but it's much, much better.

So think of me these next three weeks, I could really do with some cards to cheer me up. I'm hopeless at emails at present, but if you don't mind not getting a response, they're fine. Postal address is PO Box 93, Launceston TAS 7250, email: fiona.bardenhagen@gmail.com

I was pretty down at stages during this last cycle, though I found it good to  acknowledge my feelings, rather then suppressing them in an unhealthy attempt to stay positive at all costs. It's natural to feel angry, upset, and miserable when life serves you lemons. And while lemonade tastes great, it takes effort and a lot of sugar to turn the lemons into lemonade.  

Now to sleep, sweet dreams everyone.

Cycle 5, day 12. On the home stretch

Sunday the 16th of June

I've had a good weekend, though it's been miserably cold, with an icy wind from the south east that has chilled me to the bone. I get particularly cold between the shoulder blades and on top of my head. We're lucky to have a well-heated house, but some drafts still get in and make things unpleasant.

I had lunch with an assortment of old school friends yesterday, it was great to see them again, including one who I hadn't seen for 30 years, a wonderful woman who was a few years ahead of me at school, and who has been a marvelous support through this trying year. One of my boarding-house room-mates came and stayed with us last night, it was fantastic to meet her grown-up daughter and to have breakfast with her this morning. There's something so comforting about reconnecting with old school friends, there's a level of acceptance and affection that heart-warming, and I feel so glad to see them again. 

I have my last dose of chemo in Wednesday, so tomorrow will be spent having a routine pre-chemo blood test, seeing the medical oncologist, and going to get set up for my radiation, including getting four tattoos which act as markers for the radiation treatment,

 I've been reading up on Taxotere and G-CSF again, wondering if there is anything that we can do to prevent another episode of neutropenia, like having the G-CSF the day before chemo. I found an article in Australian Prescriber that recommended against giving chemo and G-CSF on the same day, as "some combinations may increase myelosuppression" - i.e., make matters worse for my white blood cells. Dammit. I'll just have to pack a bag and do my best to protect my immune system for the next week. If I end up in hospital with a fever again, I'll be ready to rest and recover. I'm so glad there's only one more round left, it's been an awful endurance event, and I feel like I'm barely limping at times.

I have to remember to ask about my vision, it's been getting worse over the last few months. I thought it was just because I haven't been using my new multifocals when reading, and that I've been spending too much time trying to read small print on my phone, but visual changes can result from chemo too. Something called cystoid macular oedema, or a build-up of fluid in little cysts on the macular, because Taxotere can cause fluid retention. Fantastic! I'm hoping I don't have it. It's bad enough to have gained 5 kg in the last 6 months. I'm now the heaviest I've ever been, even more than when I was pregnant. At least my jeans still fit, and I'll be walking every day in an effort to fight fatigue and to recondition my poor body. 

Not long to go. Time for sleep.

Feeding the mouse

Thursday 13th June 

I had a great day yesterday, I almost felt normal. It was wonderful, and I tried hard not to overdo it, knowing I'd suffer today. 

I felt okay this morning, Ben and I took the boys to school and enjoyed Nathaniel's assembly, but I forgot to grab my coat and I froze in the bitterly cold southwesterly wind. I'm now sitting on the couch, wrapped up in my down jacket, trying to get warm, and feeling exhausted. 

One more dose of chemo to go.

In the meantime, I'll work on this lovely practice from Rick Hanson.

Got cheese? The Practice  Feed the mouse. Why?  As the nervous system evolved, your brain developed in three stages: * Reptile - Brainstem, focused on avoiding harm * Mammal - Limbic system, focused on approaching rewards * Primate - Cortex, focused on attaching to "us"   Since the brain is integrated, avoiding, approaching, and attaching are accomplished by its parts working together. Nonetheless, each of these functions is particularly served and shaped by the region of the brain that first evolved to handle it.   The last JOT - pet the lizard - was about how to soothe and calm the most ancient structures of the brain, the ones that manage the first emotion of all: fear. This JOT continues the series by focusing on how to help the early mammalian parts of your brain feel rewarded, satisfied, and fulfilled: in a word, fed.   This has many benefits. For starters, when you feel fed - physically, emotionally, conceptually, and even spiritually - you naturally let go of longing, disappointment, frustration, and craving. The hungry heart gets a full meal; goals are attained and the striving for them relaxes; one feels lifted by life as it is. What a relief!   Feeling fed also helps you enjoy positive emotions such as pleasure, contentment, accomplishment, ease, and worth. As Barbara Fredrickson and other researchers have shown, these good feelings reduce stress, help people bounce back from illness and loss, strengthen resilience, draw attention to the big picture, and build inner resources. And when your own cup runneth over, studies have found that you're more inclined to give to others; feeling good helps you do good.   Last, consider this matter in a larger context. Many of us live in an economy that emphasizes endless consumer demand and in a culture that emphasizes endless striving for success and status. Sure, enjoy a nice new sweater and pursue healthy ambitions. But it's also vitally important - both for ourselves and for the planet whose resources we're devouring like kids gorging on cake - that we appreciate the many ways we already have so, SO much. How? In everyday life, draw on opportunities to feel fed - and as you do, really take in these experiences, weaving them into the fabric of your brain and being. For example: * While eating, be aware of the food going into you, becoming a part of you. Take pleasure in eating, and know that you are getting enough.   * While breathing, know that you are getting all the oxygen you need.   * Absorb sights and sounds, smells and touches. Open to the sense of how these benefit you; for instance, recognize that the seeing of a green light, a passage in a book, or a flower is good for you.   * Receive the warmth and help of other people, which comes in many ways, including compassion, kindness, humor, practical aid, and useful information.   * Get a sense of being supported by the natural world: by the ground you walk on, by sunlight and water, by plants and animals, by the universe itself.   *   Feel protected, enabled, and delighted by human craft, ranging from the wheel to the Hubble telescope, with things like glass, paper, refrigerators, the internet, and painkillers in between.   * Be aware of money coming to you, whether it's what you're earning hour by hour or project by project, or the financial support of others (probably in a frame in which you are supporting them in other ways).   * Notice the accomplishment of goals, particularly little ones like washing a dish, making it to work, or pushing "send" on an email. Register the sense of an aim attained, and help yourself feel at least a little rewarded.   * Appreciate how even difficult experiences are bringing good things to you. For example, even though exercise can be uncomfortable, it feeds your muscle fibers, immune system, and heart.   Right now - having read this list just above - let yourself be fed . . . by knowing that many many things can feed you!   Then, from time to time - such as at meals or just before sleep - take a moment to appreciate some of what you've already received. Consider the food you've taken in, the things you've gotten done, the material well-being you do have, the love that's come your way. Sure, we've all sometimes had to slurp a thin soup; but to put these shortfalls in perspective, take a moment to consider how little so many people worldwide have, a billion of whom will go to bed hungry tonight.   As you register the sense of being fed, in one way or another, help it sink down into yourself. Imagine a little furry part of you that's nibbling away at all this "food," chewing and swallowing from a huge, abundant pile of goodies that's greater than anyone - mouse or human - can ever consume. Take your time with the felt sense of absorbing, internalizing, digesting, There's more than enough. Let knowing this sink in again and again.   Turn as well into the present - the only time we are ever truly fed. In the past there may not have been enough, in the future there may not be enough . . . but right now, in what the Buddhist teacher Thich Nhat Hanh calls the Pure Land of this moment, most of us most of the time are buoyed by so many blessings. Falling open and into the Now, being now, fed by simply being, by being itself.   Being fed.

Cycle 5, day 14. The benefits of sleep

I'm feeling much better today, not so tired, no so miserable. It helps that it's a mild, sunny day, warm enough to leave my coat in the car when I walked the boys to school. I'm going to pay some bills this morning, then have a nap before I head back to the clinic to get blood cultures taken from my port and arm, just to make sure my port isn't infected. If it is, it will probably come out, and I'll have my last dose of Taxotere through a vein.

It also helps that I had a couple of good, refreshing, naps on the weekend, which made up for waking at about 230 each morning and having trouble getting back to sleep. My left side is uncomfortable, it seems that I'm getting some sensation back on the inside of my arm and along my side, which is good, but it verges on being painful. Which is tiresome when my energy is as low as it has been.

One good thing I discovered during early-morning reading was some product information about Taxotere, which said that nearly 25% of patients with abnormal liver function tests get febrile neutropenia while on Taxotere, and that the nadir can begin 4 to 7 days after treatment. So there was a 1 in 4 chance that I would get febrile neutropenia on this drug, even with the G-CSF injection on day 2.  I'll be ready for it next time, and hope that there's no delayed nadir, like my radiation oncologist suggested last week. Information like this is incredibly helpful, it takes away the feeling that everything that can go wrong has been going wrong, which was making it hard not to feel sorry for myself.

I realised on Saturday morning that it takes energy to avoid self-pity, but that a sense of perspective helps relieve self-pity.

I was succumbing to a crying spell on Saturday morning when David came up the stairs, saying there was a text message on my phone. I was expecting a text from a very dear friend who was due to have her second child by elective caesarean on Friday. Instead of the expected photo, the message read that their dear baby had died peacefully on Thursday, and that they were still trying to work out what had happened. I only spoke to her last Wednesday, everything was going fine. I am so devastated for their loss, and even now can't imagine how someone would begin to cope with going home from hospital without the baby that they had been looking forward to meeting and falling in love with. My troubles are nothing compared to that loss.

I started reading a book this morning, it's called Your life matters. It talks about the importance of being connected to your true self, being genuine, of working through the feelings associated with having cancer. Sounds fair enough, didn't say anything controversial in the first few chapters. But then it said that many cancer survivors say they never felt as "truly alive" or "real" as they did when they were having cancer treatment. I can't relate to that at all. I feel tired most of the time, which doesn't make me feel truly alive. At times I feel almost normal, but then I do too much, like sitting down at the computer to pay bills and deal with emails for a couple of hours, and I'm utterly exhausted. The fatigue makes me irritable, which makes me feel guilty, so I don't feel "truly alive" in that respect either. The times in my life when I have felt truly alive have been those exhilarating times when the sun is shining, or when the rain is pouring, when I'm with people I love, when I feel like I'm making a difference in the world, or when I'm simply just enjoying the beauty of the world and the company of others. That's what I miss, and what I'm looking forward to - shrugging off the shackles of fatigue and being able to be creatively engaged in and with the world.

Time for my nanna-nap. I'm going to have them religiously from now on.

Cycle 5, day 9. Nadir, schamir.

Friday 7th June

It's a beautiful sunny day in Launceston, but freezing too, even with my down jacket on. I just took Ginny for a gentle walk down the street and back, and had to wear the hood of my jacket, the cold was penetrating my polar fleece beanie. I'm now sitting on the couch, trying to get warm, the jacket is slowly melting the feeling of ice between my shoulder blades and on my scalp.

I went to see my radiation oncologist this morning, he's great to talk to, and is good at asking questions and answering them thoughtfully. I asked him why I became neutropenic so soon after my latest chemo, when the nadir is usually 7-10 days. He said it was a good question, and it was unusual to have a nadir four days after chemo. After asking what medications I was taking, and excluding them as a cause, he said it was possible that it was a delayed nadir from the previous chemo cycle. That is, the white cell production stimulated by the G-CSF after my fourth round of chemo had slowly died off and given me neutropenia after the fifth round. Then my last dose of G-CSF kicked in and boosted my white cells so that they started to rise again. If this is the case, then I might have another neutropenic episode shortly after my final dose of chemo, and again 3.5 weeks after that. I hope not, but it's best to be prepared. 

The other fun thing he told me is that I'm going to feel worse before I feel better. I was telling him how it's so frustrating to be so physically exhausted, though not feeling unwell. I still feel mentally alert, but the lack of energy lowers my tolerance for a lot of things - I get overwhelmed quickly and get snappy. Part of me watches in horror as a snap at people, but the primitive, self-protective part has quicker reflexes. It reminds me of when our dog Tiny got her leg caught in a rabbit trap when I was little, and she bit Dad's finger when he tried to release her. Pain and fear made her bite a person she loved. I feel a bit like that sometimes, or like a wounded animal that snarls at others who come too close. I just want peace and quiet, and no demands.

Rick Hanson, author of Buddha's Brain, talks about three different levels of brain - reptile, mammal, and primate. I'll share one of his practices here, as it's something that might help all of us, whatever our circumstances

Down deep, do you feel at ease? The Practice  Pet the lizard. Why?  I've always liked lizards. Growing up in the outskirts of Los Angeles, I played in the foothills near our home. Sometimes I'd catch a lizard and stroke its belly, so it would relax in my hands, seeming to feel at ease. In my early 20's, I found a lizard one chilly morning in the mountains. It was torpid and still in the cold and let me pick it up. Concerned that it might be freezing to death, I placed it on the shoulder of my turtleneck, where it clung and occasionally moved about for the rest of the day. There was a kind of wordless communication between us, in which the lizard seemed to feel I wouldn't hurt it, and I felt it wouldn't scratch or bite me. After a few hours, I hardly knew it was there, and sometime in the afternoon it left without me realizing it. Now, years later, as I've learned more about how the brain evolved, my odd affinity for lizards has started making sense to me. To simplify a complex journey beginning about 600 million years ago, your brain has developed in three basic stages: · Reptile - Brainstem, focused on avoiding harm · Mammal - Limbic system, focused on approaching rewards · Primate - Cortex, focused on attaching to "us" Of course, the brain is highly integrated, so these three key functions - avoiding, approaching, and attaching - are accomplished by all parts of the brain working together. Nonetheless, each function is particularly served by the region of the brain that first evolved to handle it. This fact has significant implications. For example, in terms of avoiding harm, the brainstem and the structures just on top of it are fast and relatively rigid. Neuroplasticity - the capacity of the brain to learn from experience by changing its structure - increases as you move up both the evolutionary ladder and the layered structures of the brain. Consequently, if you want to help yourself feel less concerned, uneasy, nervous, anxious, or traumatized - feelings and reactions that are highly affected by "reptilian," brainstem-related processes - then you need many, many repetitions of feeling safe, protected, and at ease to leave lasting traces in the brainstem and limbic system structures that produce the first emotion, the most primal one of all: fear. Or to put it a little differently, your inner iguana needs a LOT of petting! How? To begin with, I've found it helps me to appreciate how scared that little lizard inside each one us is. Lizards - and early mammals, emerging about 200 million years ago - that were not continually uneasy and vigilant would fail the first test of life in the wild: eat lunch - don't be lunch - today. So be aware of the ongoing background trickle of anxiety in your mind, the subtle guarding and bracing with people and events as you move through your day. Then, again and again, try to relax some, remind yourself that you are actually alright right now, and send soothing and calming down into the most ancient layers of your mind. Also soothe your own body. Most of the signals coming into the brain originate inside the body, not from out there in the world. Therefore, as your body settles down, that sends feedback up into your brain that all is well - or at least not too bad. Take a deep breath and feel each part of it, noticing that you are basically OK, and letting go of tension and anxiety as you exhale; repeat as you like. Shift your posture - even right now as you read this - to a more comfortable position. As you do activities such as eating, walking, using the bathroom, or going to bed, keep bringing awareness to the fact that you are safe, that necessary things are getting done just fine, that you are alive and well. Throughout, keep taking in the good of these many moments of petting your inner lizard. Register the experience in your body of a softening, calming, and opening; savor it; stay with it for 10-20-30 seconds in a row so that it can transfer to implicit memory. (For more on how to take in the good and defeat the innate negativity bias of the brain - whose unfortunate default setting is to be Velcro for negative experiences but Teflon for positive ones - go to this link.) Some have likened the mind/brain to a kind of committee. Frankly, I think it's more like a jungle! We can't get rid of the critters in there - they're hardwired into the brain - but we can tame and guide them. Then, as the bumper sticker says, they wag more and bark less. Or relax, like a lizard at ease in the sun.

I think my inner lizard is a gecko, like the ones that clung to the roof of a magical place where I stayed in Ubud, Bali, with 270degree views to the east, north, and west. Time to soothe it and coax it onto my shoulder...

Cycle 5, day 8.

Going home today with oral antibiotics and strict instructions to come back to emergency if I get unwell. I should be happy, but I just want to crawl into my own warm bed, and to able to potter around the house when I have the energy. 

I'm so tired of this, so tired. I don't feel unwell, just drained. I know my body needs rest, and I'm resting, but I feel myself resisting giving into rest. I hate being idle. 

I feel a bit like a fire that is burning down, the coals are still glowing, and there's an occasional spark, but the person  tending the fire isn't adding fuel very often. When they do, it burns rapidly and is gone, and the fire yearns for some long-burning logs. 

I guess the analogy of a fire is comforting, as long as I keep the coals burning and conserve my energy, there will be renewed resources ahead. 

It's just so hard to stay positive, to not feel sorry for myself, to resist the waves of anger, guilt, envy, resentment, self-blame, regret, and sadness. I guess this means I need to improve my mindfulness, let the feelings come and go like clouds, blah blah blah. I'm afraid of  giving in to the grief, afraid it will overwhelm me. I don't want to get depressed, I've already felt twinges of the weighty darkness, and irrational anxiety that threatens to consume me. I'm not going to let that happen. I have to keep my head above water, keep floating and watching the clouds go by until I can get out of the water.

Breast cancer seems to be perceived as something that makes you stronger, survivors like Olivia Newton-John present a cheerful face, talking about how glad they are to have gone through the frigging "journey". I can't recall anyone talking about how damned hard it is. The difficulties of treatment are mentioned in hushed tones. Our society wants to hear the happy success stories, the trials of the treatment aren't something to be discussed, it belongs in a mysterious darkness that decent people don't want to know about. 

Yet on television I see horrendously graphic portrayals of murder and man's inhumanity to man. This is acceptable fodder for the masses, but talking about the horrible treatments that people must endure in order to live is not?

It's a crazy world. 

I feel an obligation to be positive, upbeat, cheerful. Stiff upper lip and all that. It's tiring to maintain this attitude, because it means suppressing the miserable feelings that any rational person would expect someone to have in my situation. But I try to maintain a bouyancy in my outlook, so I won't sink into the abyss, and because there's evidence a positive attitude helps with recovery. Bloody hell! If I don't stay positive, my outcome may be worse. What a cruel incentive. Carrot and stick together. And this poor mule just wants a rest.

(some hours later, lying on the couch at home)

For me, going through chemo is a bit like going to fight in a war. People pat the departing soldiers in the back, wish them well in battle, and pray for their safe return. They might send care packs and letters, but there isn't much contact with the soldier during the fighting. The solider might return home briefly for leave, but the battle is fought only with a small squadron. Some are conscripted, some are too young to be fighting, others will join freely. The people at home wonder what is happening on the battlefield, their imaginings fearful, but they don't want the gory details, the stench of mortality is too horrific, too confronting. Far more comfortable to welcome the soldiers home from battle, to commiserate over wounds and losses, to encourage the battle-worn to return to normality, to get on with life, to put the past behind them. Society celebrates the ones who act as if nothing has happened, or who embrace life again without demonstrating the emotional scars or the fears that war will return. They're admired for seeming stronger or wiser for the experience, but it seems indelicate to ask them what it was really like to be in mortal combat, and few are willing to talk about the experience. Perhaps they don't want to relive the fear, the boredom, the sacrifices. Perhaps it's too intimate, like talking about the experience of sex, or of moving one's bowels. It's taboo to talk about some things. 

I don't know if it's taboo to talk about this. I've probably offended some people months ago, some may think this is a form of attention-seeking. It's not. I'm writing this for my friends and family. This is the way I talk to those closest to me, so some of you are getting to know me much better than I'll probably ever know you. 

Returned soldiers find it hard to talk to people who haven't been through it. Far safer to share recollections in hushed tones with other survivors. They'll understand the flashbacks, the aching wounds, the disturbed sleep, the anxiety, though the PTSD symptoms aren't identified as such. I suppose the taboo of talking about horrific experiences is protective, it suppresses the memories, and saves the naive from vicarious trauma. Sharing some of the terrible war stories I've heard from elderly WWII veterans would not help anyone, but they haunt me when I recall them, so I try to keep them locked away, hoping the memory will fade.

As someone going through the battle, I worry that I'll seem like weak if I express my fears. I want to seem strong, resilient, uncomplaing. Nobody likes a whinger. I don't want to to complain. I'd like to be inspiring. I don't want to  put people off having treatment if they ever need it. That's my greatest concern. Chemo is hard, but better than the alternative. I'm grateful for the treatments that are achieving such good outcomes. I just wish the battle was over. I want to feel well again.

Cycle 5, day 7

4:44am 

The problem with being in hospital is watching rubbish tv from a limited selection (abc1, seven, nine, and sbs), and then dreaming about it. I'm not sure what dream woke me, but I think it involved murder on a house renovation site where teams of people were manufacturing intrigue and alliances while refugees went homeless and were attacked by right-wing extremists. At least I never had Bob the Builder dreams when the kids were little! 

It looks like I could be in here for a number of days, so I'm taking it one day at a time, and trying to imagine that my room is in a luxury health retreat, with individualized attention and masseuses who are so good that they're booked out months in advance. Not that it matters, because I get to practice meditation several times each day, relax in the steam room, eat gourmet food, and take scenic walks along the corridor, with views over sun-drenched hills and a beautiful river valley.

If there was a massage school in Launceston, the students should come here to do hand and foot massages on the patients. It might help boost their recovery.

It is interesting to go through chemo and to discover how debilitating it can be. My current hypothesis is that chemo causes fatigue, which reduces working memory (WM) capacity (at my worst, if I'm making a cup of tea for someone, I need to concentrate on that task before I can do anything else, even answering a question). It's like I've gone back to a very old computer which crashes if more than one app is open at a time. It has everything on file, it's just very laggy, and would often prefer to be on standby than doing advanced calculations. Being fatigued and having insight into reduced WM, and a conflict between wanting to rest and wanting to be normal makes me irritable, which irritates my nearest and dearest, which makes me feel bad... Luckily I usually manage to switch into calm mode, though I also feel irritated that my needs aren't being understood, that I need to explain that I'm irritable, and irritated that they're irritated with my irritation!

Deep breathing is a wonderful thing.

I recently met someone who was in hospital for five months, having treatment for leukemia. So I really can't grumble about being here a week or two. And at least I'm giving the microbiologists something to wonder about - they've grown a gram-positive bacillus from my blood. Apparently gram-positive bacilli are rare, gram-positive cocci are more frequent. It could be from surface contamination, but they're giving me good old vancomycin to cover it. I just love four-hour infusions - I'm going to get good at walking the corridor with my infusion machine, and do my bit at challenging stereotypes of people on drips.

I'm going to start writing a list of things I want to do in the months and years after treatment finishes, so that I have something to look at when I'm feeling poorly, and something to add to over time. The one thing I'd really like to do is take the kids to Singapore, travel through Malaysia by train, visit the southern beaches of Thailand (Krabi provence especially), then go to Burma, before it gets ruined by tourism. Maybe towards the end of the year.

I'd better try to get back to sleep. I hope I don't dream of Angelina Jolie again, it's hard to keep up with her.

Hoover dam!

Still in hospital, slept all day today, now legs aching intensely, temperature at 38.8 on my oral thermometer, 37.9 on the hospital ear thermometer. 

Just had a pleasant chat with one of the oncology registrars. My final blood cultures aren't back yet, but I've grown some Gram-negative beasties, so called because their outer membrane is impermeable to the violet dye used to class bacteria as gram-positive or negative. Impermeable membranes means tough little bacteria. And, apparently, at least one week in hospital on IV antibiotics. Maybe two or three weeks. 

What fun!

I've been feeling like a drama queen, I don't know many people who've had breast cancer, but I seem to have had more complications than the ones I do know. So I asked the registrar how many breast cancer patients get admitted like I am. The answer: less than 20%. I'd rather be in the 80% who don't get complications, but I suppose someone has to be the one in five. I just don't want to be away from my kids for so long. For any time at all. I'd rather be at home.

Positive reframe time: 

-some oncologists say that side effects prove that the chemo is working, so any residual cancer cells are currently being obliterated. 

-I have a nice room with a view to the south, where the leaves haven't fallen off two oak trees yet

- I'm in the best place for my condition, and the staff are lovely

- the house is tidy and the bills are paid

- an old friend visited today, it lifts my heart so much to see or hear from the people I love.

- there's only one more dose of chemo left

- I have some Pilates socks for walking around the ward, and I'm going to mask up and go walking as often as I can

Now, how to keep my mind occupied...

I downloaded a sample of Game of Thrones on my iPad, but it's too gory and violent for my current tastes. I need recommendations for inspiring and amusing books, nothing too heavy or taxing.

I hate tv, but if I'm going to be stuck here, I've asked Ben to bring in our little one, so that I can access more channels than the basic four on the hospital system. And I can watch DVDs. 

I don't like being unwell. Every time i need to rest, I'll try to pretend that I'm having a luxurious sleep and that I'm 25 again. When life was relatively simple.

Feel free to email, phone, or visit (if you're well). Raspberries are highly appreciated!

I'm getting sick of this

Back in hospital, the second time in 24 hours. I had a fever at home last night, they admitted me, did blood tests and gave IV antibiotics. Although I felt hot overnight, my temperature stayed below 37.5. I was keen to leave, and was feeling relatively well (not that I can remember what okay feels like), so they let me go at lunchtime. 

I had a lovely lunch at Seaport with Ben and the boys, went home and slept on the couch from 230-4. The boys woke me with noisy playing (sounded like they were murdering each other, interspersed with giggles). I got up, and my teeth promptly started chattering. My temperature was 37.7, and went up to 38.3 over the next half hour. 

I rang my rad onc, and he said I needed to go to emergency. He said that the patients who get into trouble are the ones who get a fever and stay at home to see what happens. He said it was possible that my white cell count had fallen in the last 24 hours, and that I had an infection, even with the G-CSF.

He was right. My white cell count has fallen from 3.0 to 1.7 since yesterday, and my neutrophils are down to 0.5, despite the G-CSF. So I get to have IV antibiotics for a couple of days, and enjoy the company of the lovely staff of the LGH. It's annoying to be unwell, but kind of good to have proof that I am. I was beginning to think I had a sophisticated form of hypochondriasis.

Last night the emergency department sounded like a bizarre symphonic Dante's inferno- the regular beeping of machines, a baby who cried for hours, an elderly lady who was confused and in pain, and the loud questioning of an inebriate who had injured his head. I can't wait for tonight's performance.... 

I never realised how much I took my health for granted. Good health is a precious gift, appreciate it and look after yourselves. Xx