Sleepless ramblings

It was hot and humid yesterday, and it's still 21 degrees at 130 am, with very little breeze to cool the air. I think I woke because it's hot. I've been to the loo, had some Endone and panadeine forte (my favorite pain combo), played a few levels of Gardens of Time (my current game addiction), and I don't feel very sleepy, so here I am, blogging in the wee hours.

We had a pretty good weekend. Buying a new fridge last week has made my kitchen look and feel complete. It's also led to a rearrangement of things in the laundry (to accommodate our old fridge), and the energy to move the TV and sofa in the family area (off the kitchen), so I'm feeling happy with part of the house for the first time in ages. Clearing my paperwork off the dining table also helped, even though it's now in disorganized stacks in the sunroom. I have a theory that our house would be tidier if we had people come to visit at least twice a week. It's amazing how quickly we can tidy things up if we have a deadline (even if things just get stacked away somewhere else). The feeling of neatness is very calming, and serves as constructive procrastination - the feeling that you're doing something useful, even if it involves avoiding the thing you really should be doing (like last year's tax, for example).

Writing about domestic bliss is another form of procrastination. I'm sure you aren't here to read about the secret life of our household ;) So, what am I avoiding?

Hmmmmm...

My chemo starts on Tuesday. I will be seeing my surgeon again In the morning, then the physio in the afternoon. Ben went down to Hobart last night for an all-day meeting that will include dinner tonight. He's planning to drive back early tomorrow morning so that he can be with me for the chemo. I could probably manage with Mum's company, but it would be good to have him there for another set of ears to take in the information about chemotherapy, side effects, precautions, and how the next 24 weeks of my life might be completely stuffed up by this bloody cancer.

I'm not looking forward to the next six months very much at all - I hate fatigue, I hate being stuck inside, I hate being told by every doctor that I can't do the gardening because I can't afford to get a scratch, "as it might get infected." I hate being told I have to wrap myself in cotton wool, avoiding people with infections, avoiding too much sun... I know it's all for a good cause, but it really irks me. There is so much I want to do, and I'm finding it hard to do very much at all. I found an article suggesting that chemo-brain may start even before chemo, and it rings true to me. The stress of being diagnosed, the anxiety about test results, the waiting, the fatigue, dealing with the anxiety of others around me... It all adds up to diminished attentional resources and energy for tasks. You can read the article here:

http://breastcancer.about.com/b/2012/12/19/chemobrain-may-start-before-chemo.htm

My seroma is still doing its thing: filling up, getting drained (6 times and nearly 2 liters of fluid so far), filling up again. It's not as painful as before, but the skin under my scar is thickening up, and looked pretty weird tonight. I asked Dr Google about skin thickening after mastectomy, and he told me it can be a sign of tumour recurrence, but usually months or years after surgery. I should have added "and seroma" to the search terms, because then it would have told me that skin thickening can be a response to the seroma. I'm so glad I have a surgeon and an oncologist who will answer my neurotic text messages on a Sunday evening. Much better than Dr Google (who, I suspect, gained his qualifications online ;)

Overall, however, I think I'm doing okay. I still enjoy company, food, and wine. I feel exhilarated walking around the town with family or friends, I look forward to the future, even to every day of treatment, when I see it as another day closer to having killed any cancer cells that weren't residing in my tumour. I love my family and friends very much, and I feel a greater closeness to and appreciation for every living thing, as every one has their own individual battles to fight. I'm still enjoying the frivolous, and I can't wait for my new hats to arrive. I'm being gentle on myself for my lack of energy, and encouraging myself to set boundaries on tasks within the house and family, even though there's some flack because I'd previously done a lot of things for the kids because it was easier to do them myself and get it right, or quicker to do it myself rather than deal with their petulant arguing. It will be good for them to take more responsibility for their share of work around the house, and we're seeing improvements already.

I'm sad that Dad's younger brother Brian passed away yesterday after many years of back pain, pancreatitis, heart problems, and finally dialysis. He had never complained, always kept his calm sense of humor, and had a wonderful head of soft, fluffy, dark hair even though he was about 80. He spent the last 6 weeks of his life in hospital with an infection that wouldn't go away. He and aunty Lona decided to stop dialysis and commence palliative care, he'd simply had enough. He was a wonderful man, and I want to go to his funeral, even if I'm not supposed to hug anyone for fear of infection. I want to hug Aunty Lona, my cake-decorating guru, I want to see the extended family, and to plan a celebration for later in the year when my treatment is over. I'm sick of seeing them mostly at funerals. It's a part of getting older that really sucks.

There's still no breeze, but I'm starting to feel tired again. I hope I go to sleep quickly, I don't want to cry for all the things I fear, for all the loved ones who have gone. I want to rejoice for the gift and wonder of being alive, for the miracle of love (thanks Annie Lennox for giving me a song to focus on).

Wishing you all peace, love, and joy.

I'm going to be FEC-T

Saw my medical oncologist this morning. He seems nice, but I can't say it was the best hour I've spent recently. I felt really cranky and anxious this morning - seeing him was the next phase in this journey, and makes it seem more real, not some bad dream that I can somehow wake up from.

The list of possible side effects that he listed is daunting: fatigue, aches, nausea, hair loss, nail changes, neutropenia, drop in platelet numbers, liver dysfunction, allergic reactions, cardiotoxic reactions, later risk of haematological cancer (leukemia), need to go to emergency immediately if I get a temperature over 38 degrees.... All things I've read and heard about before, things I know don't happen to everyone, but part of me just wanted to get up and run away. From him, from it, from everything, find a cave somewhere on a hill and pretend it's not happening, that everything is going to be okay. Of course I sat there, I just want to get the treatment started and over with. He could see I was upset and offered me the tissues, saying he could see I was taking it badly. What total crap! It's just the first time the tears have been flowing freely, the first time I've felt this is inescapable, that it's real. I know that sounds strange, coming from someone who has just had their left breast removed and a body that keeps producing fluid to fill the vacant spot. But I could see the tumour on the scans, I could feel the lumpiness and growing tenderness, I knew it had to come out. Chemotherapy is to kill off any micrometasteses, and to protect the remaining breast. I understand and accept the rationale, it just seems a bit more abstract, and I do not want to be sick. I don't like being fatigued. I don't want to be bald like the people I saw this morning, There's too much to do! I would rather have a year off without pay than go through this. It's so bloody unfair, but fairness has nothing to do with it.

Chemo will start next Tuesday morning. Ben has to be in Hobart for a meeting on Monday and Tuesday, so mum will need go take me. The cheerful nurse said it will take about two and a half hours. At least Ben will be home on Tuesday night, and we'll see how I respond. Can't wait. (laughs ironically and decides to sleep for an hour, dreaming about the 6 hats I've ordered).

If you're interested, here's a link to info about FEC-T http://www.macmillan.org.uk/Cancerinformation/Cancertreatment/Treatmenttypes/Chemotherapy/Combinationregimen/FEC-T.aspx

Sounds like fun, fec-ing fun.

Pandora

Panadol proved to be no substitute for the Panadeine Forte that ran out last night. I'm blessed with a kind radiation oncologist who wrote me a script for some more Endone, and some Oxycontin slow release, to keep the pain at bay. I expressed my frustration at how long it was taking to heal, and he gave me a very helpful analogy: if you put a tomato plant in the garden, you don't expect it to bear fruit in one day, or even one week. Recovering from surgery takes time, just like growing things in the garden.

Of course, my impatient mind wants my body to hurry up and defy the laws of nature in its healing capacity, but my heart is in sympathy with my body and is telling my mind to stop being so bossy. My mind worries about that, because in being bossy and busy, it keeps all the troublesome emotions locked in Pandora's box. My mind doesn't like it when they seep out like vapors, bringing tears to my eyes, it makes my mind fear a loss of control. But I know that I need to let the feelings out, that crying isn't a sign of weakness, that I won't lose control, that people won't think less of me. Dad's death last year taught me that I can be strong and keep functioning even when my heart is breaking, and that I needed to allow myself to grieve for all that we lost with his illness, the wonderful grandfather that my boys never truly knew. I also learnt that I need to nurture myself through difficult times, or I am not much good to the people I love.

This week has felt like a lull in the juggernaut that swept me up when I was first told about the lump on January 18th. I've made it through surgery, I've recovered quite well, and the adrenaline surge that kept me going has gone. It feels a bit like bodysurfing a long, turbulent wave, getting dumped, but rising to the surface full of exhilaration at the ride, the unreality of being tossed and pummeled at the bottom, and the joy of still being alive. Now I'm just waiting for the next wave to come. I'd prefer to be out of the water, but I know I need to catch these waves of treatment and make it to the surface each time, even though my body may ache and I will get very tired. People have gone through far worse things and survived, I will make too.

My rad. onc. also gave me helpful and non-scary info on the proposed chemo regime - 3 to 4 treatments with FEC, then 3-4 with Taxotere, followed by radiotherapy to the chest wall and above or below the collarbone. He says the plan is to over-treat, rather than under-treat me. I'm game. I want to be one of the 3/4 stage 2B breast cancer patients who is still alive in five years. Not one of the 25% who is gone.

I'll be meeting my medical oncologist at 9 on Tuesday. Chemo will start next week, and we'll see how I respond to it. I hope to buy a new 700l side-by-side fridge so that I can have room for frozen meals, in case I don't feel up to cooking. It feels a little like I'm preparing for a siege, only I don't have any enemies, and visitors will be permitted and welcome.

Time to meditate and peek in Pandora's box before I go to sleep. According to wiki, Elpis, the spirit of hope, was left at the bottom of the box that Pandora opened. That's a spirit I want to nurture.

Sweet dreams, dear people, and love.

Living vs waiting

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.

Cording

I wish this post was going to be about pretty cording, the type used in upholstery. Sadly, it's about another side effect related to the lymph node clearance done during a mastectomy.
Cording is another name for axillary web syndrome, where cord-like structures develop in the armpit (axillary area) and trace down the arm, or to the chest wall. It's thought to be due to disruption in the flow of lymphatic fluid, and it can go away by itself after 2-4 months, but it can be painful and lead to restricted motion. This is a problem if it occurs before radiotherapy, as the arm has to be above the head for radiotherapy to the chest. There's more technical info about it here: http://www.stepup-speakout.org/Cording_and_Axillary_Web_Syndrome.htm

I developed a cord this afternoon, which was a darned nuisance. I'd been showing off my wonderful range of motion to the people at work this morning, and the physio who saw me yesterday had given me a clean bill of health, with instructions on exercise and skin care to prevent lymphoedema. I then went to the surgeon, who drained off another 300ml of fluid, and went home to try on my new berlei postoperative bra, a gift from the breast cancer people. I wore it today, and it was quite comfortable, though I couldn't get my Dacron-filled prothesis looking right - my seroma was filling again, and by the end of the day, my operated (Dacron) side was looking higher and larger than my unoperated side. Not the most glamorous look, but I don't really at the moment about symmetry.

I don't know why the cording happened - though having a seroma is associated with greater frequency of cording. My new bra was more constricting under the arm than the support singlets I'd been wearing the past two weeks, and I felt there was more puffiness in the skin above the bra than there had been with the singlet - I'll go back to the singlet tomorrow, as it's not as tight and seems to allow the fluid to move more freely. Maybe I did too much today, maybe carrying a school bag for 200m after school contributed, maybe it was going to happen anyway. The limited info about it on the web talks about not stretching the axilla too much in the first 10 days after surgery. Today is day 13, yesterday was the first day I'd put my arms above my head for any period of time. Oh well, makes me take the risk of lymphoedema more seriously, so it's sunscreen every day from now on for me, gentle moisturizers, insect repellant at night (to avoid bites that might get infected), compression sleeves for flying, and gentle massage only.

I managed to get into the physio tonight, she massaged the cording gently and used the laser. The tightness in the cord diminished, but it's still sore under my arm, and I hope it isn't stiff tomorrow. I'll keep doing my exercises to maintain my range, and will be seeing the physio again on Monday. It's a bloody nuisance, the recurring seroma is uncomfortable enough! I have been getting by on one Endone and one panadeine forte for the last day, I hope I don't need to ramp up the pain relief again. There are so many things I want to finish before chemo starts in less than two weeks.

Now to sleep, perchance to dream...Though I'm not sure I want to dream about my evening viewing, involving Blackadder II and Bob. it might be a little disturbing if Lord Flashart shows up in my dreams, or if I see bearded Baldrick in a dress...ewww!

Juice

Another lovely day in Launceston! Took the kids to school, lined up another walking buddy, went to work to photocopy some medical documents and sort out my leave arrangements, caught up with 9 wonderful people at work, bought a slow juicer, had a visit from a cousin, drank apple and carrot juice... Now feeling tired, but have to collect boys from school, get new school shoes for David (his black shoes are suddenly too small), and get my eyes tested. I'm so glad my cousin brought a roast chook for lunch, that will make dinner easier to prepare, as I think I'll need a nap when we get back! I've only had one endone and one panadeine forte today as well. The seroma fluid was contributing to the pain.

I saw my surgeon last night, she drained another 300ml from my seroma, and said she'll see me again on Friday. She said that seromas can take 4-8 weeks to resolve, so I have 2 to 6 weeks left. Lucky it doesn't hurt to have it drained, though the suction does feel funny when the fluid level drops. I could feel the fluid being sucked away under my skin with my hand, it felt like a hot water bottle being emptied. Quite surreal.

If chemo starts in 2 weeks, and I will be having 6 treatments, one every 3 weeks, followed by 5 to 6 weeks of radiotherapy, then there are about 26 weeks to go until my treatment is over - as long as I keep healthy and my blood counts don't mean chemo has to be delayed.

Hence the juicer. We're going to start each day with a family drink of apple, carrot, celery, beetroot and ginger juice, with a little broccoli added for me. I'm told this mix is good for keeping winter colds at bay. If we can all stay healthy, and I'll boost my immune system with some other herbal preparations, I should be nearly finished with treatment by my birthday in August. Then I can have the rest of the year to recuperate, or return to work part-time...I'm blessed with very lovely work colleagues and a fantastic career, though my family are even more wonderful than that. Can't wait to see the boys again, in 20 minutes...they're growing up so quickly, but they still give the best hugs.

Cloches

Some of my favorites - might order one soon...but I'll have to do some more research, and make a decision!

Not too keen on turbans or scarves, though beanies are good, and I bought a lovely deep purple one from macpac last year. It should keep me warm in the winter. I'm hoping to do lots of walking each day, and am lining up walking buddies so that I can enjoy the company of others while I do it. I won't be walking much today, though. The tramadol I took last night helped me sleep and eliminated the pain, the one I took this morning totally knocked me out and I'm feeling a bit dizzy and zombie-like. Looking forward to going down the stairs v-e-r-y s-l-o-w-l-y.

Hair

I'm starting to feel a little sad at the prospect of losing my hair. I spent all last year growing it to collarbone length, and just as it's got there, it's going to be falling out! This is also irritating because wavy hair has started to come back into fashion, and for the first time in my life, mine was behaving itself well when allowed to go wavy.

When it was shorter, the waves were just ridiculous. Undisciplined, unshapely. So when I learnt to straighten it with the hairdryer, I regretted all those childhood and adolescent years when I hated my wavy hair and felt ugly because I didn't have long straight hair like the other girls. I was never taught, and never asked, how to straighten my hair because mum told me how lucky I was to have wavy hair. I thought I should be grateful for what God had given me, and that I shouldn't try to change it.

So it seems very ironic that I should soon lose my hair, now that I'm finally happy with it, and able to control it to suit me. It's also ironic that it is likely to grow back fuzzier and curlier than before.

At least I have a beautiful natural hair wig to use. I got David to try it on after school - he thought it was fun to dress up as a "hippy"; I was given a glimpse of what I might have looked like if I'd had long hair as a kid (David seems to resemble me a lot, only I think he's far more attractive), and it also gave me glimpse of what a daughter may have looked like. I imagined how having had long hair at school would have helped me feel more normal, less of an ugly freak with horrible short wavy hair, how that might have improved my self-esteem, and how it would probably have changed who I am today. I'm glad for all the difficulties I encountered. The bullying wasn't fun, I had some pretty low times, but it all made me stronger and helped me get to where I am now.

So when my hair starts to fall out, I'm going to tie it in lengths, cut it off, donate it for wigs, shave my head smooth, and rejoice in finally getting my Sinead O'Connor smooth look. I'll pull up some of her songs on YouTube, and rather than getting maudlin over 'nothing compares 2u,' I will sing my heart out to 'troy' and her other gutsy songs from The Lion and the Cobra album, and I'll be glad for everyone who has struggled with adversity. (I'll also be glad that I haven't felt compelled to sing such angst-ridden songs for over 20 years;)

I'll enjoy flipping the lovely layered wig around, and wearing beanies at home to keep warm, and when my hair starts to grow back fuzzy, I'll cover it in classic, stylish hats and cloches (there are some great ones in the USA). I'll be getting stronger still, and calmer, and more focused on making the most of this wonderful life, and in loving and appreciating every living thing I encounter.

PS (if my obstetrician could hear me, he'd probably say that's the last sentence is the opiates talking, like he did when I said I felt euphoric after Nathaniel was born... Cynical savant!)

Sweet dreams!

I love Mondays

Today was a great day. I slept deeply last night, and woke feeling refreshed, first time in ages!
One unexpected benefit of having to sleep on my back is that I no longer wake in the middle of the night because my arm has gone painfully to sleep. I feel so cosy lying between my two side pillows, it's a little like being in a hammock, but without the wonderful rocking feeling.

It was another perfect day in Launceston. Cool to start with, then warming up to a pleasant day in the mid-twenties with a gentle breeze to make things more interesting.

The boys got to school on time and happy, and I bumped into a friend who was able to join me for a coffee, such a wonderful way to start the day! I then collected an insurance form from my GP, which included the mammogram and ultrasound report from 12 months ago. There wasn't any abnormality or hint of abnormality in those scans, just dense, fibrous tissue and a number of cysts. So it's good that I kept asking questions and had the repeat mammogram and ultrasound this year. And I feel so blessed that my tumour hasn't spread to the lymph nodes or elsewhere.

After a lovely deep nap at home with Po-Po, another lovely friend came and took me for a drive before taking me out to lunch. More good food and company, She also brought a lovely natural hair wig on loan from a friend in Melbourne, who is generously sharing her wisdom and support after having gone through breast cancer last year. I am so blessed to have such wonderful, sensible, supportive, good-humored friends!

My GP gave me scripts for more endone and some tramadol, as there has been an increase in pain recently, either because of the seroma (which needs draining again tomorrow), or because of healing in the nerves that were damaged during the surgery. It's very strange to rock up to a chemist with scripts for opiate-based pain relief and to be fussed over! I wasn't expecting to be treated with suspicion, but I'm not used to having strangers fuss over me. It feels good.

So I'm feeling comfortable tonight after taking 2 endone at 5, and a tramadol at 830. I hope it sees me through the night. I'm looking forward to sleep on this cool and peaceful evening, and I will summon memories of my wonderful father to mark the anniversary of his final hours in this life.

Sleepy musings

I can't believe how tired I feel.

I knew having a mastectomy was major surgery, but so was the emergency caesarean I had with David 11 years ago in April. I bounced back from that okay - was driving within a week, no major pain issues a week after hospital. I thought this operation would be the same. I guess I didn't count on my greater age, the fact that it was done under general anaesthesia, rather than an epidural, the fact that I was under for nearly 4 hours, and the possible cumulative effect of it being my second GA in 4 months.

Anyway, I'm exhausted.

And yes, I should be turning off the iPad and going to sleep, but I'm not feeling a sleep window open just now. So I thought I'd write some text to counteract the recent pictorial posts regarding my left breast.

My radiation oncologist is happy with how my wound it healing, and said we should start chemo in 2 weeks - so that means the week beginning the 24th of February. I asked him which day of the week is best, having heard that it can take a few days for the side effects of chemo to kick in. He said it varies between people, so I guess I just need to choose a day and hope for limited side effects.

I asked him if there was anything we could have done last year to pick up this cancer before it got to this stage, like doing a core biopsy in a couple of areas of tissue. He said that core biopsies damage the tissue and affect subsequent imaging studies through scarring. Last year, despite my left breast being lumpier than the right, there weren't any changes visible on ultrasound. And MRI, even this year, didn't pick up the full extent of the tumour. The MRI suggested three masses, but on pathology it was one large mass, with some areas of ductal carcinoma in situ. He reminded us how hindsight makes us imagine that things we know now should have been known then, or makes us forget that technology available now may not have been available then.

I feel incredibly lucky that there were no necrotic (dead) areas in the tumour, and no evidence of vascular or lymphatic infiltration of the cancer cells, and all of my lymph nodes were negative (clear) on routine histopathology. So while it's frustrating that it wasn't detected last year, when in was worried about it, we have a very good outcome, given the tumour size. With chemo and radiotherapy, and a prophylactic mastectomy on the other side next year, I should get through this and have no recurrence.

February 12th marks the anniversary of Dad's death. Today marks the anniversary of the last time I saw him alive. I told him I'd go and see him again the next day, but I chickened out. I didn't believe he would die, I thought that not seeing him would make him live longer. He passed away around 530 in the morning, a nurse was with him, and I was able to sit with him from 6am until Mum arrived. Our last hour together, one year ago today, was lovely. I held his hand, stroked his head, sang songs to him, and told him how much I loved him, how he was the best father in the world, and how glad I was to have him as my father. I told him not to fear the transition ahead, because he would be met with love and joy by all his wonderful family who had gone before him. Gwen, Merle, Monty, Hilton, Adye, Frank, Jack, Deseree, their spouses, his parents, Aunties May, Olive, & Eileen, Uncle Roy and uncle Huon, his cousin Louis, Mum's mother and father, and all her side of the family. So many loving souls waiting to greet him on the other side, Harvey Donald, the "favourite uncle" to all his nieces and nephews, some of whom have already passed on.

I sensed Dad in our kitchen the other night, when I was home from hospital and worried about what lies ahead. It was probably my imagination, but I could sense him and my cousin Marita, and dear old Roger raising a toast to me and Dad said "don't worry, girl, it's not your time to come over here yet."

I'm glad I've had a year to mourn Dad, and to grow stronger with the other losses and challenges that last year brought. I feel that I can face this year with greater energy and strength than I would have had if I'd been diagnosed last year. I'm feeling more grounded and centered in myself than I ever have before, and despite dreams where I tearfully engage orcs and goblins in mortal combat, I feel a sense of calmness most of the time. The love from others is helping so much, I'm getting emotionally stronger each day.

Now to sleep, and to start getting physically fitter before chemo starts.

My-my-my-my-seroma

Seroma definition: a collection of fluid under the skin

In reality: squishy, growing, looks just like a boob. A common side effect after mastectomy.

Drains are inserted at the end of surgery to remove the fluid. When the output decreases to a certain amount, the drains are removed. I had one removed on day 3, and the other removed in day 4 after surgery. Some women go home with drains in, but the risk of infection increases the longer the drains stay in, my surgeon drained 60 ml with a syringe on day 5, and said she'd prefer not to drain less than 100-150ml because of the risk of infection with draining too often.

I took the first picture on Friday, when i wondered if i should get it drained again. By yesterday, the amount of fluid had increased to the point that my skin was stretched and getting uncomfortable. When I lay flat, all the fluid went to my armpit, which started to ache at the edge of the surgical area. I guess the fluid was pressing on skin and underlying tissue that hadn't been separated during surgery. The second shot was taken this morning, when it was very uncomfortable. So it was a relief to have over 400 ml drained today, though the second black and white shot shows that it was hard for her to get all the fluid out. The final shot, taken tonight, probably doesn't show the further growth clearly, but it's grown from in cup size from AA to A again today. Like a bizarre, accelerated unilateral puberty, though without the hormonal flucutations and peer pressure;)

Biggest nuisance is the increased pain from this. My left armpit has been feeling numb (good not to feel the needle going in to drain it), but now the area behind the armpit is sore, and under where the breast was.

I've been keeping track of my pain meds on the fridge, and though I wanted to have 2 panadol and 2 endone before bed, that would have put me 2 over my daily panadol limit. So I had one of each and expect to repeat that during the night. I hope the pain goes away soon, I'm surprised at how tired I feel. Very comfy sleeping on my back, though.

An unexpected journey

It was another beautiful day in Launceston. A slight breeze ruffled the trees, and the sun brought a lazy warmth to the air.

I spent the day in the house, dozing with our 15yo Tibetan spaniel, first upstairs in the morning, then downstairs where it is cooler in the afternoon. I didn't get lots of sleep, but I needed the rest. I'm surprised by how tired I feel, and how I am interested in resting above all other things. I didn't expect to feel this way - I've never been good at lazing around, and I didn't realise that having the surgery would make me feel fatigued and sore for this long. I'm also surprised at how I'm accepting my body's need for rest, and I'm feeling quite protective towards myself.

The seroma under my mastectomy scar has filled up again overnight, but it's not uncomfortable. The worst discomfort comes from the prickly numb sensation under my arm and on my side. I'm still doing my exercises, and have a pretty good range of motion in my arm, but I expect to be bossed around by the physio when I have my first session next week. I love physios, it's their job to be bossy, and I have liked every physio I've ever met (even though I feel a bit intimidated by their bossiness;)

One wonderful thing that has happened since the diagnosis is that I now enjoy snuggling up with our poor little dog, and I feel great delight with other people's dogs, especially the two sweet puppies that I've met in the last fortnight. Perhaps is shift has come because I'm feeling vulnerable and recognizing that I need other people to support me.

Before the diagnosis, I was trying to battle on through all the adversity that has been coming my way, and having to deal with an incontinent, deaf, blind, confused and circling dog when he had lymphoma last year was just too much. I couldn't let myself get upset about him, and I could rarely relax enough to enjoy sitting with him and patting him. I felt that I had enough people and things to worry about - the boys, Ben, his mum, my mum, my cousin as she kept fighting her cancer, the conference, work, the invisible stigma of brain disorders, the fact that so many people I've loved have died - without getting caught up in feeling for a sick dog. I was irritated by his illness, poor thing, and while I didn't want him to suffer, I couldn't allow myself to feel too much for him. I wasn't comfortable with feeling this way, but I had to do it to survive.

Last year was really tough, but it's strengthened me for the treatments ahead. I know that I can keep functioning when my heart is broken, that I can and will cry when I need to, that I'll be irritable and hyper-sensitive to noise and stimulation and children ignoring me, that I just need to play the piano or go for a walk or phone a friend, or simply breathe, to chill out. I've also discovered that it's okay to feel lost, afraid, and confused when wondering about the future, because the future isn't written. If I focus on the present moment, everything will be ok, even if it's not as expected.

Merde, I hope so!

I worry that I'm talking myself into believing a rosy picture of the world again, as I always do, because it helps me to cope with the challenges I'm facing. Damn you, author of Pollyanna, whose name I can't remember and am too tired to google. And thank you. It's good to have a lifetime of practice putting a positive spin on things, even if my other skills aren't well-developed.

Anyway, I feel good that I'm now cherishing the chance to snuggle up with my sweet little dog, and I know it signifies a shift in how I'm coping with adversity. All the love and support I've been getting has opened my fearful heart, and it's now sending love to every living thing throughout the universe. In opening my heart, I no longer resent his need to be held before he sleeps (which is for most if the day, he is an old dog). I just need to be able to let go of my frustration at children who keep wanting me to do things for them when I'm feeling unwell... More breathing, and a good night's sleep is in order.

This hobbit doesn't want to leave her comfortable home on the hill any time soon.

Good news

I saw my surgeon again today, the pathology results were back, and all 15 of my lymph nodes were clear, including the one identified by the sentinel node biopsy. Such a relief! We went out for dinner at Stillwater to celebrate, and started to plan our first overseas post-therapy trip: fly to Singapore, take the train through Malaysia to Bangkok, then go to Burma before it becomes too touristy. Ben pulled up some photos of the beautiful stupas in Burma, it looks idyllic. And now that Aung San Suu Kyi is out of prison, I don't have the same qualms about visiting there.

Practically though, we won't be able to go until next year - my infusaport will be in for 12 months after chemo finishes, and will need regular flushing with saline to prevent thrombosis, not something I would want to worry about while travelling through SE Asia. After Asia, we'll do a grand tour in reverse: Greece, Italy, Hungary (to see Elizabeth), Germany (to check out the town of Bardenhagen), France, England, and then Scotland to trace my Scottish roots. Spain and Portugal will also need attention, as will Scandinavia, especially LegoLand :)

Other good news: I only had one tumour. The MRI suggested three, but the pathology indicated it was just one 7cm whopper, impossible to palpate externally because of the thick fibrocystic tissue above it. It's incredible that it hasn't spread to the lymph nodes, given the size, but maybe my dense breast tissue made it grow slowly and prevented it from spreading. Let's hope so!

Given the size and location of the tumour (outer lower, outer upper, and inner upper quadrants), I'll need to have radiotherapy after chemo, to ensure that there is no spread to the lymph nodes that run more along the central axis, up to and past my collarbone. While irradiating this area will increase the risk of lymphedema, I guess I'd rather risk lymphedema than cancer recurrence. And I don't like the direction the more central lymph nodes take: straight up. I've seen enough scans, patients, and pathology specimens of cerebral metastases to make me very keen to avoid them... Even the ones that looked like green jelly beans when the pathologist sliced through the brain of a man who'd been jaundiced at death. I'd rather give jelly beans to the kids to eat, than have them grow in my head.

So my dressings have been removed (nice straight scars, healing neatly), my first seroma drained, and a celebratory meal at Stillwater enjoyed with a greater lightness of heart than I've felt for weeks. I'd meant to share the Stillwater voucher, given to me after our ccn conference last year, with my conference committee, but I think they'll understand. Ben and the boys suffered my regular preoccupation with the conference for much of last year, and they deserved to enjoy a feast as much as my committee. I'll just meet with the committee there at a later date:)

If you've never heard of a seroma, here's brief explanation and amusing story: it's a build of fluid under the wound site, a mixture of blood and serum. I had two drains in after surgery to drain the fluid away, the first was removed on Sunday, and the second yesterday. Neither had been draining much fluid over the previous 24hours. So it was strange to hear my chest squelching when David hugged me after school last night, and it was even stranger to look down and see a bulge forming under the scar, almost as if my breast was trying to regrow itself!

The seroma wasn't uncomfortable, and it didn't hurt when my surgeon drained off 60ml this afternoon - one good thing about having post surgical numbness to the chest. I didnt feel the needle go in at all. The numbness is also a weird feeling - there's a loss of sensation, but also a kind of hypersensitivity in the skin under and behind my arm, a bit like the feeling you get when sensation is returning after a limb has gone to sleep. Not entirely pleasant, or unpleasant. I'm gently stroking the skin at times to get it reacquainted with sensation, as it hurts sometimes.

Speaking of sleep, I'll be turning in now. I have our lovely king-size memory foam bed to myself, and I'm working hard on developing good sleep hygiene. It's bliss to be able to sleep uninterrupted by loving children (who ended up sleeping on, or next to a single futon on the floor with Ben last night! I trust they'll stay in their own beds tonight).

Thanks to everyone who has sent me cards, emails, texts, and letters. They've given me so much joy and strength in the last weeks. And the flowers! I've never had so many!

As one kind person wrote in a card "there is only this moment."

May every one of your moments be blessed with love, joy, and contentment.

Sleep well.

Seeing in colour

after much discussion with my friends, I'm going to share some images with you, in the hope that they may be of educational value.

I took some pictures of my doomed breast on Wednesday night, as it's suggested to be helpful for the grieving process, and when time comes for reconstruction.

The special effect feature of the Camera+ app allowed a better view of the contour change in my now defunct left breast, visible when taken from below, with arm above head. I've included screen shots of the various special colour effects from the app, as they show contours not easily visible to the naked eye.

I hope that a colourful pastiche of part of a cancerous breast will be viewed as educational, rather than offensive or titillating (pardon the pun ;)

The nipple was permanantly perky, or retracted, for the last 8 months, and increasingly so before the surgery. It was more retracted in the lower half, and the contour changes evident in these images wasn't visible when my arm was at my side. They also weren't so clear when I looked in the mirror.

Nipple retraction is considered a warning sign for breast cancer. It was like the nipple was attached to the underlying tissue, so when I raised my arm, as I did for this shot, the lower part of the nipple moved up with the beast tissue. This doesn't happen on my normal side.

You can see similar contour changes in a painting by Reubens, though her arm is by her side. There has been dispute over whether or not the changes he painted were due to breast cancer. In my case, it's not disputed. The tumours were not palpable from above, the tissue just felt lumpy. My surgeon said she could feel them from underneath the breast tissue during the operation.

So if you have dense, lumpy breasts, please don't give up asking about them, and don't give up examining them regularly. If you notice any changes, particularly in the skin or nipple, please see your doctor, and if your ultrasound and mammogram are normal but you're still concerned, think about paying for a breast MRI, which may have detected my tumours earlier.

PS I accidentally posted one of these to Facebook when I was trying to text it to my cousin (the horror!). I managed to delete it before anyone saw it (I hope)!. I don't want to get banned from Facebook just now, it's a source of welcome support and distraction:) and I don't know why they're opposed to breasts, but allow all sorts of obscene and offensive language.

Day 3 after surgery

I'm feeling more tired than I expected. A bit achey, especially my upper arm. The pain hasn't been too bad. I haven't had any endone today, though its probably time for more panadol.

I slept really well last night, woke up feeling bright and ready to jump out of bed. Until I remembered that I now have the chest of a 10 year-old on one side, and how tired I got yesterday after a rotten night's sleep and a lot of visitors.

I'm taking it easy today, reading The Hobbit, have had three naps, a little outing with Ben and the boys, and not so many visitors.

The surgeon came a little while ago, said my breast weighed 800 g, and that one of the drains could come out. A strange feeling, having a 25cm long tube pulled out of my chest, like a huge worm reluctantly being evicted under my supporting hand. No pain though :)

It felt good, sitting on my bed with my shirt only half-on. The feeling of the breeze on my breastless torso reminded me of being a little kid, able to run around topless without a care in the world. Apart from more discomfort, I wouldn't mind if the other breast were gone too. No more feeling lopsided, no worrying about what might happen in the other side while I have chemo... But I doubt I'd be able to go out topless.

I'm looking forward to going home tomorrow, though I wish I wasn't so darned tired. I'm feeling a bit angry as well, this is an unwelcome disruption. I'm glad we've caught it early. I know it would have needed treatment if it had been caught earlier. I know we can't choose these things. But it's a bloody nuisance. I wanted a quiet year with my family, not another year of illness and disruption.
But you can't always get what you want, and, if the Stones are correct, sometimes you get what you need. Great.

Last year seemed bad enough, with dad dying 12 months ago, our dog getting lymphoma and going blind, my dear cousin bravely trying to keep life normal while her cancer took it away from her. Getting through all of that has strengthened me for the times ahead, and I'm grateful for that.

The surgery

I'm feeling surprisingly good, and so darned happy to be alive!

The cynical part of me worried that maybe I'd made enough progress in this life and that I'd check out during surgery yesterday, so it was a relief to struggle to wakefulness in the recovery room at 630 last night, 4 hours after I'd been joking with the anesthetist about... Something that seemed incredibly witty at the time, but was obviously so bad that he put me out before I was fully in the theatre (smart move).

Yesterday got off to a slightly rocky start - I woke at 430, wrote an email to my wonderful neuropsych colleagues, took my thyroxine at 530 so that I could have a good breakfast at 7, went back to sleep, and woke at 728, two minutes before I was supposed to start fasting! I ran downstairs, deflecting childish requests to play with my iPhone and iPad, to search the fridge for something I could scoff in two minutes. Cold pizza (one bite), two cold chicken kickers (surprisingly tasty) and a sustagen - that's all I had for breakfast. I'd meant to have a leisurely coffee, omlette with smoked salmon, and a yoghurt. I was starving by the time we got to the hospital at 1130, but wasn't hungry after the surgery. I just had a horribly dry mouth, which was relieved by the ambrosial taste of crushed ice with blackcurrant cordial on top. Who knew something so simple could be so good? (apart from a wise nurse...now the secret it out, I hope they won't have to shoot me;)

The hours before going to hospital flew by - labeling pencils and texts for Nathaniel's first pencil case, filling in long-overdue medicare and pet insurance claim forms, writing a list of the boys' favourite foods for Ben...it was good to keep busy, it helped a lot.

Ben and the boys stayed with me until after 12, then the doctors came to say hello. Lovely cheerful people on the team, much more pleasant than my last GA at another hospital, where only the admitting nurse and orderly were friendly - the staff in the operating suite just looked straight through me,and I was wheeled into a theatre of unsmiling faces. On that occasion, I was very drowsy after the procedure, which didn't stop a nurse from encouraging me to get up and dressed when I still needed to sleep. I tried to stand, and felt dizzy, and another nurse said I should go back to sleep. An hour later, the first nurse came back and told me I needed to get up and sit in one of the armchairs while she called Ben to collect me. I struggled to stay awake in the chair, and slept for another 5 hours when I got home. I know it was a day procedure, but there were lots of empty beds in the suite, and I felt like the nurse just wanted to get me out of the bed so that she could make it, irrespective of how I was doing. So it was great to be fussed over and cared for so well after yesterday's surgery. One nurse said I earnt three gold stars...I'm not sure why...maybe it's because I was, and am, feeling incredibly happy and content that the surgery is over.

I have a neat lateral wound running from the midline to my armpit, and a couple of drainage tubes. It only hurts if I move my arm rapidly. I also have an infusaport attached under my right clavicle. That one hurts a bit more.I felt pretty dopey last night, and I slept pretty well, in 30-60 minute bursts - they had me on a PCA machine (patient controlled analgesia), so they were doing hourly obs and I had to have oxygen, which was a bit irritating. As was sleeping on my back. My back thought so too, and went into spasm around 420. It was a good time to call the nurse, get up, and make a trip to the loo. It felt like a major achievement, even though I felt dizzy and staggered backwards a couple of times, like Dad used to when his gait was failing. Such delight in being on my feet, in eating and drinking, and sleeping.

I've had a great day, with flowers and visitors and chocolates, and now I'm settling down to sleep. Every day is a day closer to beating this thing, and I am feeling so much love for, and from others. It is wonderful to be alive,.