Category: Breast cancer

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Well, we’re almost at the end of October – Breast Cancer Awareness Month.  While I’m really not in to the wash of pink and the positive spin (and triviality?) that it conveys, there is still an underlying message here that I would like my sisters across the world to understand and that is that breast cancer can strike any of us.

Most breast cancers aren’t genetic.  I think the figure is somewhere around 90% that aren’t.  Certain lifestyle factors can play a part.  Alcohol is certainly one of them but stress can be another that leaves you open (as it does for many chronic diseases).  Hmmm…alcohol and stress…double whammy…  And being overweight, etc, etc…  But there are many women out there who have lived exemplary lives in the health stakes, staying fit, eating the right food, etc. who still get breast cancer for no other reason than that they are female.  Unfortunately, our sex is by far the major risk factor to this disease.

So, what I am asking you, my friend, is to get to know your breasts and the potential signal that something is wrong.  Yes, we all know about lumps but did you know that many breast cancers do not present as lumps?  Maybe a fifth or more.  Or that sometimes the lumps are too deep to feel?

What should you be concerned about apart from lumps?  A slight thickening in the breast, dimpling or puckering of the skin, flattening of the nipple or discharge from the nipple, pain, itching, redness, scaliness – basically anything that looks or feels not-quite-right.  And don’t forget under the arms.  There’s a great graphic floating around with lemons – check it out.

And do you know that in many countries, including Australia, mammograms are free from 40 years old (although often only advertised from 50).  Yes, they may be embarrassing.  Yes, they can be uncomfortable or more than a bit painful.  Yes, you are busy.  But believe me, breast cancer trumps all of those.  So get thee to a breast screening clinic if you haven’t already done so.  And when you have it done, ask about your breast density.  Dense breasts can make it hard to pick out the cancer so it’s worth knowing about and, at present in Australia, only WA Breastscreen make it standard practice to advise women of this.  If you find something of concern after you have had a mammogram, see your GP – mammos aren’t infallible and cancers grow.

And if you’re younger than 40 and notice something, follow it up and don’t be brushed off.  So many GPs are, unfortunately, not as aware as they should be.  (And don’t be brushed off if you’re older, either.)

So, tell your sisters, your daughters, your mothers, your nieces and your friends.  Don’t forget the men, either.  While it’s far less common , men do get breast cancer (approx. 18000 women pa in Australia compared to approx. 250 men pa), and often don’t recognise the problem or their GP doesn’t – this leads to men being diagnosed at late stage cancer.

It’s scary stuff but much scarier if you don’t do something about it.

That’s my bit for Think Pink.

Okay…so it’s my 56th birthday today (I spent most of 55 thinking I was already 56 – what a waste).  Happy Birthday to me!  And it’s been just over a year since I finished chemo, almost a year since I had radiotherapy, and 363 days since I started on Letrozole.  Where am I now?

I’m not really sure, to be honest.  Life goes on with all of the stuff that was happening before and now the cancer is old news (unless it comes back, of course).  The problem is that it’s not over and never will be.

The Letrozole that I will probably be on for another 4, 9, 14 or 19 years has had a devastating effect on my body.  It’s brought on arthritis that was always going to happen but nowhere near as soon.  It’s also causing major issues with my joints and the soft tissue in between.  Some days I struggle to put on my socks and there have been times that the kids have had to help me out of the car.  I’ve also put on weight from it and it seems that no amount of exercise is improving my muscle strength.  And this is only a maybe as far as preventing recurrence.  But it’s the only maybe there is, so I will persevere with it.  I know that a lot of women stop taking it (there’s a huge compliance problem with it and researchers scratch there heads wondering why, mostly ignoring the reports of the severity of the side effects) – they say that quality of life is more important.  I agree that it’s important and I feel that I’m only half the person I should be but my kids will take half a mum over no mum so that’s my answer.

There are also some permanent leftovers from chemo, radiation and surgery.  The skin around the area is tight from the radiation, worsened by my body’s attempts to deal with the surgery trauma.  I still have no feeling under and down the top of my arm, and parts of my right foot are still affected by peripheral neuropathy.  Rollerskating a couple of months ago was an interesting exercise given that I was pushing off with that foot and couldn’t feel it.  I was also shocked at how scared I was to get out on the rink but I did it.

Then there’s the emotional/psychological side.  There’s a huge pressure for cancer survivors to “make it all worthwhile”…we’re supposed to have some sort of epiphany and make our lives count.  What a bloody guilt trip!  Personally, I’m just trying to cope here and get on with what I need to.  Add to that, a memory that’s like one of those old string bags, a resilience level that you could trip over, and the struggle to recognise the stranger in the mirror…well, it’s all a bit of a mess.

It sounds doom and gloom, doesn’t it?  And it feels it at times.  I recently learned that a close colleague had died from breast cancer – she was diagnosed a few months before me.  I know that this is very much an outcome that I could be facing but I will not go gently into that dark night.  But the only weapons I have are those that the medical profession provide and they are woefully pitiful both in side effects and efficacy.

On the other hand, I’m here and I don’t intend to go anywhere soon (unless it’s somewhere sunny – August 7 is turning on it’s usual rain).  So, Happy Birthday to me!

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This morning, 12 months ago, I was preparing to go into hospital for my first surgery and this is the day it all became real.  Prior to that I was in a fog.

So, this is the famous “journey” that gets talked about – at least my version of it.  Lumpectomy with sentinel node removed (that was what I went in for a year ago) – I was recovering okay from that but with a lot of pain and numbness (yes, it does appear you can have both) from the node removal.  Path reports back were not good so back into surgery on 8 January to have a mastectomy and more nodes removed as the cancer was on the move and quickly.  It seems that the surgeon was able to get it all that time.  Recovery much tougher and I developed cording.  Pretty annoyed that I wasn’t able to swim all summer due to the risk of infection.  And feeling overwhelmed by the cancer diagnosis and the fact that it’s now more serious and I was facing chemo as well as radiation.  More surgery to have the portacath inserted at the end of January and in for my first chemo treatment at the beginning of February which turned into an absolute debacle.  Tried again a couple of days later and thus began the 6 month dark tunnel of chemo treatment.  Survived that only to be fried for three weeks having radiotherapy.   And started 5, 7 or 10 years on hormone therapy.  A few weeks to get over things, get the port out and back to work.  Three weeks ago, I had my 12 month scans and was declared still cancer free or as much as they can tell from a mammogram.

So, I’m considered NED (no evidence of disease) and I’ve finished active treatment.  Where am I now?  I’m all better – right?  Here is the picture of what all better looks like:

• Exhaustion like I’ve never experienced pre-BC
• Ongoing gut stuff
• Constant joint pain from hormone therapy
• Menopausal symptoms to the nth degree also from hormone therapy
• Ongoing cording problems
• Skin and muscle tightness from radiation
• Cognitive and memory problems
• Anxiety and depression (go figure)
• Lack of resilience (yes, you can make me cry really easily)
• Physical fitness has gone to hell
• Haven’t had a full night’s sleep in over a year (anaesthetic & chemo drugs don’t count)
• Hearing deterioration (probably from chemo)
• Probably others I can’t remember (see cognitive and memory problems)

So, all better – right?  But I have made it through the year and I guess that makes me a survivor.  To all intents and purposes, the cancer is gone and today is the only day I can know about.  What happens tomorrow is in the unknown.  All I do know is that I have done everything I could.  If I die from this or something else in the near future, it won’t have been worth it.  If I see my kids grow up and, even better, if I get to know them as mature adults, it will have been worth every symptom.

I’ve had some tough times this year, and my family has suffered those tough times with me.  It has reminded me that there are some very generous people around me who have supported me and my family throughout.  Some of these people I knew very well before BC, some were acquaintances and colleagues, others I had never met.  Some did their thing face-to-face while others have given virtual support.  I don’t have to name them because they know who they are and what they have done with their words, food and other, very needed, practical help.  (And it would probably be like Gwynneth Paltrow at the Oscars – the list would go on…and on…)

I probably won’t post as much on this blog now if things continue the way they seem to be going although I may put the odd one up – it’s become as much of a journal for me as a way of communication.  If I hadn’t been doing this, there would have been so much lost in the fog of treatment.

It’s been a busy few weeks leading up to today with appointments and Elena’s Year 7 graduation – it’ll be nice to have all 3 kids in the same school next year – and, of course, Christmas (bah, humbug!).  But now I’m on leave for a few weeks and looking forward to a much-needed rest – well, at least once the ridiculous rush of the festive season is over.  I plan to spend lots of time in and around the water this year.

A safe and happy Christmas and best wishes for 2019 to you and yours.

A quickie just to say that all is good.

I had a bad moment on Monday when I was called back in for an unexpected ultrasound that took forever.  The radiographer was trying to be upbeat and chatty but I was feeling resigned that something had been found.  Then, I was called back in to speak to the doctor only to be told that as they couldn’t get hold of my screens from last year from Breastscreen, and as the breast was dense, she wanted to be extra careful.  All good.  The poor radiographer apoligised to me as she must have known what I was thinking and was not allowed to say that it looked okay.

Saw the surgeon on Tuesday and he confirmed that the screen looked fine, and that the mastectomy site passes inspection.  He also checked out near my collarbone where I have wondered if there was some swelling – slight and probably caused by the radiation.

We had a very brief discussion about reconstruction as I’m still not sure what I want to do.  According to him, a very interesting op to do but not a lot of fun from the patient’s perspective.  A really big operation – something in the vicinity of 10 hours, I think, and a long recovery due to the tummy incisions.  He believes that I would have a good outcome but it would be a big deal.

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It’s been awhile since I’ve posted here.  I’ve been back at work now for 6 weeks and let me tell you, this survivorship thing is fucking hard (yes, the language is necessary).  I am so tired.  I’m dragging myself to the end of the week.  If I don’t do anything but try to recover on the weekend, then I feel like I’m not even living and if I do do something, then I’m shattered.  Four and a half weeks to go – not sure if I’m going to make it.  I’ve never longed for holidays so much in my life.

Apart from that, how am I faring?  Not sure.  People ask and I say that I’m doing well but really, that’s a bit of a gloss-over.  I’m standing and I’m going through the motions but I really don’t know where I am.

Busy, busy, busy at work with the end of the year.  I was just thinking to myself a couple of weeks ago that I’m not getting enough time to exercise as I’m too tired when I get home.  Well, the next day the books started pouring back in – I spent it lifting armloads of books, cranking the compactus handles, and climbing up and down the step-stool.  I could barely move by the end of the day – I think I’m getting my weight-bearing exercise if nothing else!  It’s tapered off a bit but will start again today with the Year 10s and 11s having final exams.  (Poor James was supposed to be studying on the weekend and ended up losing a lot of it to gastro or food poisoning.)

Well, it’s coming up to 1 year since my diagnosis and that means I’m due for my 12 month scan.  I’m going in this morning to St Andrews to have a 3D mammogram (it’s got a fancy name but that’s essentially what it is).  And tomorrow afternoon, I see the surgeon, Jim Kollias, for the results.  I’m not sure how I’m feeling about it.  I should be anxious, I guess (they call it scanxiety) and probably I am, although I don’t really feel it.  It’s not that I’m really positive but nor am I negative – more fatalistic.  Whether that will continue, who knows?  I was discussing recurrence with my oncologist, Tony Michele, a few weeks ago as I was feeling very on edge about the pleomorphic aspect of the cancer at the time and that that meant it may have only been there for 12 months.  This is the gist of his response:

Firstly, they can only estimate how long the cancer has been there – there is no test that works backwards. My prognosis is good and the numbers are on my side against a recurrence.  With Letrozole (the drug I’m on for possibly 10 years), it is even better.  Obviously, these are statistics and while statistics tell a story, they don’t help the individual.  He said that he knew for me, there is only “cancer” or “NED” (no evidence of disease).  But at this stage, I have to believe in NED until it is shown to be otherwise.  Because living, thinking every twinge or pain is a recurrence, is no way to live.  And between him and my surgeon, they will be monitoring me closely.  He also said that he knew that trying to live without anxiety of recurrence wasn’t an easy thing to do but that it was really important for my mental health to try.  His final words on the topic were that the best thing I could do to help prevent a recurrence was exercise and fitness but at this stage I had done everything I could do and that now it was time to try to get back to living.

Am I back to living?  I don’t know.  What will the scans show?  I don’t know that either.  Will my Zen state disappear and I become a blithering mess by tomorrow afternoon?  Quite possibly.

On another tack, I was at my exercise class on Friday night and the guest speaker was a breast reconstruction nurse.  She was very honest and it was good to be able to bombard her with questions and also to hear the questions that others asked.  I have never been sure whether I will go down that path as the thought of more surgery is rather overwhelming.  I left thinking that I hate being flat and I hate the idea of a reconstruction.  Stamp foot here and someone please wave a magic wand!

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A short post to remember my big sister, Lori, on what would have been her 65th birthday – my clever, funny, frustrating, beautiful, tragic sister.  This year, as I sat in the same places she sat so long ago with her breast cancer treatment, I have felt her presence as if there was a ghostly underlay on reality.  Some of the tears I have shed this year have also been tears for her.

The photo I have posted was meant to be another one of the two of us but I can’t find it (and that’s upsetting) so I’m just going to go with this one and replace it at a later date. This is how she often is in my memory – about 20 years old with the future ahead of her.

Friends, pals, buddies, kindred spirits – SISTERS!  Happy 65th Birthday, Lolly Lamb.  You’re remembered and deeply missed.

It may take more than one sitting to complete this post as lots of thoughts meander through my brain…

I have been reflecting a bit on recovery.  It’s been a bit of a rude revelation.  I knew that it would take a few weeks to get over chemo and that there was also the likelihood of some burning and fatigue from the radiation, but for some reason I had the idea in my head that by now I’d be full steam ahead.  That is definitely not the case.  It is a very slow process and not the linear incremental progression that I expected.  I have good days when I almost feel like I’m back to normal, and then I slip back for a day or two – sometimes nausea, sometimes extreme tiredness, and sometimes, like yesterday, an irrational inability to do anything but the most essential tasks.  If anyone asks me how I’m going, I can answer briefly but then I turn into an anti-social mute with no ability to elaborate on anything.  And the aching legs at the end of the day…

That said, I had my review appointment with the oncologist on Thursday and he is happy with how I’m going.  He also told me that it’s going to take some time for the effects of the chemotherapy to work it’s way out of my system.  So, my expectations have been rather unrealistic.

I also had the port flushed on Thursday so that it doesn’t clot up.  The great news about it is that the oncologist has given the okay for it to come out!  I see the surgeon in a couple of weeks for my review with him and will discuss then when it can be removed.  It’s definitely served it’s purpose and saved my veins but I cannot wait to see the back of it.  On the other hand, it will be removed using only a local and I’m not feeling so good about that.  The idea of being awake and aware while someone removes a device sewn into a major vein near my heart does not fill me with confidence.

2 DAYS LATER – I went for a walk first thing yesterday morning and as usual it also became a cerebral exercise.  Everyone told me at the beginning that I should seek some sort of counselling (the mental effects of a breast cancer diagnosis is likened to having PTSD) but until a few weeks ago, I just wasn’t ready to talk to anybody.  Of course, when I was, I couldn’t get into see anyone and, after weeks of getting nowhere, I was starting to feel rather desperate.  However, the CFS came to the rescue with their SPAM service and I was able to make an appointment with a psychologist the very next day.  Poor woman – I think she must have been wondering what struck her as I regurgitated a slew of thoughts and feelings about the last 9 months, but I’m hoping she’s used to it.  I was pondering this as I was walking yesterday and it occurred to me that thoughts can be like a load of soggy washing in a clothes dryer  – spinning around, tangling up but going nowhere fast.  Seeing the psychologist is like having to take that heavy load of washing outside, shake things out and hang them on the line in the sunlight.  Hopefully, I will get to the stage where I can take them off, fold them and put them away.

The other thought that came to me on my walk was about James and his walking ability.  Last weekend he walked from our place, met up with the Heysen Trail over the ridge and walked almost to Castambul, along the other side of Kangaroo Creek Dam.  I don’t know exactly how far that is but, although it’s mostly downhill, there’s a lot of hills to climb as you go.  He got down to Montacute Reserve…then he walked back…uphill.  I would love to do that (well, maybe not the return journey) but I wonder if I will ever be fit enough again.  I think it was three years ago that he and I did the Pioneer Womens’ Trail from Hahndorf to Beaumont, which due to some track washouts at the end, was about 26km.  Something to aim for, maybe.

So, they are my thoughts on the recovery process so far.  It is happening but is not as straightforward as I thought it would be and positive thinking only takes you so far.  I’m starting to really dislike the term “new normal” that seems to be the buzz word.  I don’t know how to describe this sorting out business but new normal seems to trivialise things – a way to box it up and tie a bow on.  Anyway, until the next exciting instalment…

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(Me under the rad machine at RAH – unflattering and blurry – taken by the radiologist)

It’s been just over 8 months since the first surgery and I finally finished active treatment yesterday!  Wooohoooo!!!!

It has been a very long 8 months (nearly 9 since diagnosis) – 2 surgeries either side of Christmas, 6 months of chemotherapy that left me just surviving, and now 3 weeks of radiotherapy which was pretty easy.  I’ve had to recover from the surgeries, deal with the side effects of chemo and trot myself in to the City every day for rads plus all of the myriad appointments that come along with it – regular physio to deal with the cording, scans and blood tests, ECG to make sure the chemo wasn’t messing with my heart, rehab exercise to regain strength…  It’s like being in a dim tunnel and not being able to look either side; just move forward and hope there’s light at the end.  I still have some of the side effects from chemo (numbness in my toes, indigestion and oedema) and my skin will keep reacting to the radiation for up to 3 weeks but I’m hoping it won’t be too bad.  I still get tired but the radiation will have contributed to that.  And I know the anxiety will get me when it is time to have checkups – scanxiety, they call it – and probably in between… I doubt that will ever leave me.

A few days ago, I went back through this blog and I realised what a valuable record this is for me.  I have never been a diary writer but I am very glad that I started this.  Some things had receded into vague memories while others were as fresh and traumatic as when they were happening.  It was interesting (and affirming in that I hadn’t imagined it), how my mood, confidence and positivity had altered during the course of treatment.  I wondered beforehand if I had really felt so okay as I remembered feeling after surgery as it seems like it must have been another person, but the blog entries confirm it, as they confirm the emotions I was experiencing at different times.  And, of course, we lost Dave’s Dad during the early days of me having chemo.  Reading that entry now it seems a little like it wasn’t a big deal, but, of course, it was – I wasn’t being callous, just reluctant at the time to write too much as it seemed like an intrusion into the family’s grief.  For all that it was his time and he was suffering, it was very hard and he is very much missed.  I just wish that his death could have been quicker and gentler.  The other thing that going through the blog highlighted (and it’s not something I have forgotten) is how much support I have received from my family and friends, from neighbours and colleagues – from well-wishes to gifts and food – it has all helped cushion me from the harsh edges of this experience.  And the women I have met on the BCNA network who are also going through this, some who have become online friends, and who have not only given me real support but have sent me hats and scarves and even a wig.

I’m not kidding myself that this is by any means over and I know that I will come down off this high, but I feel like I have gotten through something huge and made it out the other side, more or less intact.  I know that I have changed and I don’t yet quite know what those changes are going to mean.  I feel a subtle shift inside.  I do know that I cannot, and will not, allow myself to get as stressed by things that I have no power to change.  At the moment, that is my only real goal.  I only have this life and, while I’m not planning to go out and change the world, I need to focus on enjoying my time.

But enough of this –  I am done!  (Okay, I’ve got 5-10 years of hormone therapy and lot’s more appointments, but let’s not go there now.)  I left the hospital to go out into an unseasonal August Adelaide day of 26oC – the sun was shining and I could not get the smile off my face.  I don’t think I’ve smiled like that for months.  Got home and sat outside (suitably covered against the risk of sunburn on the radiated area) and ate a chocolate cream doughnut for lunch!  Time to get on with life!

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Well, the rain is pouring down outside and it reminds me of the line from the poem I learnt in Prep (Reception to those of you who didn’t go to school aeons ago in SA) – “the daffodils dance in the sun and the rain”…  Yesterday, I glanced out of the kitchen window and noticed that my daffodils are starting to flower.  I ventured outside and saw the yellow heads appearing across the hillside, poking up in clumps through the grass below the house where a tiny James and I planted bulbs so many years ago.

Daffodils have a very special place in my family story and in my heart.  My Dad lived for his family and his garden (not sure it was always in that order).   He grew vegetables because that’s what you were supposed to do but he loved to grow flowers.  As the daffs came out around the time of my sister, Lori’s birthday, they were always considered to be her flower.  This had an added poignancy given that they later became the symbol of the Cancer Council.  Lori has seemed like a shadow following me this year as I travel in her long ago footsteps, sitting in the same hospitals and waiting for the same results.  Seeing the daffodils is both a joy and a sorrow, and I must admit to shedding some tears.

My birthday flowers were violets but unfortunately this year, my violets became quite lost in the weeds that have taken over the garden.

Yesterday must have been the day for polar emotions because I laughed out loud at the hospital when I was waiting for the lift.  Luckily, no-one was there at the time.  Usually, after my radiation appointment, if I have to wait for the lift, I’m either helping someone with directions or I just vague out.  Well, yesterday I actually looked around me and studied the sketched murals on the walls.  One of the most noticeable elements in the main mural was a hair clipper and I thought how appropriate that was given that it was outside of the radiation oncology area.  Then I noticed the other parts of the pictures – cattle dog, motorbike, barbed wire, etc. and I realised that it wasn’t a hair clipper at all but was sheep shears!  I had to laugh!  I realise that it is just carrying on the themes of SA that they have in the hospital (the ceilings of the radiation rooms have beautiful outback and gumtree scenes) but I think they could have thought that one through a bit better.

As for radiation, I’m almost halfway through and going okay.  My skin is getting a bit itchy in one place but hopefully that will settle down before I go back on Monday.