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Everything is Pink

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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.

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It’s My Birthday! One Year on from Chemo…

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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The Secret Suckiness Of Life After Breast Cancer – someone else’s words

I’m posting this as much so I can refer to it when things are getting me down, as for any other reason.  It really does feel like this most of the time and in a very weird way, it’s heartening to know that it’s not just me.  Of course, I am grateful to be alive or I wouldn’t be putting up with the shit that is ongoing treatment, but recovery is not being back to normal.  I now live with chronic pain and discomfort, as well as the fear of recurrence and new things to make life uncomfortable.  If you’re reading this, it’s not a whingefest and I don’t expect anything other than awareness that this is what it’s like.  (And I doubt very much it’s only breast cancer survivors who feel this way but that’s all I can talk about.)

The Secret Suckiness Of Life After Breast Cancer

JUDITH BASYA
OCTOBER 17, 2017, 9:00 AM
Now that I’m two years past chemo and have a full-ish head of hair, people no longer tilt their heads and make meaningful eye contact when they ask how I’m doing. They pose the question casually, as they would to anyone else, and we exchange the usual pleasantries. Then, maybe, they lower their voice or touch my arm and ask how I’m really doing.
How much truth can I slip in before they change the subject? Should I try to be funny? I usually go with the gratitude-but-challenges script they expect, then see if they’ll grant me the space to get real. “I’m happy to be alive, of course, but my current life compared to my old one sucks [note frown]. I mean, I’m still dealing with a lot of side effects [note eyes wandering] — but don’t worry, nothing I can’t solve by smiling a lot!”
Complaining is always awkward, but complaining about cancer gets you more side-eye than a priest at a pro-choice rally. People prefer to hear about drama they can help with, like decoding texts from a toxic ex. Scary diseases should be avoided in polite conversation, because, well, we’d all like to avoid them, but this goes doubly if you’re a cancer survivor: You’ve survived, after all.
Nevertheless, I persist.
“So, I take this one pill called tamoxifen to prevent another recurrence, and a dozen more pills to deal with the side effects of the tamoxifen, but now the sleeping pill isn’t working as well and I’ve tried all the other options, so…”
“Better tired than dead,” they’ll tell me. They’re right, and indeed I am grateful to still be here. Yet my life as it was, the one I envisioned and built and paid my dues for, is gone and not coming back. In my new life I have a fraction of my old energy, chronic nausea, no libido, uncontrollable irritability taking its toll on my husband and kids, osteoporosis limiting my outdoor activities, a beard on my face, and a brain so foggy… I forgot what I was going to say.
Oh, yeah: that I’m grieving. Grieving now, almost three years later, because I had to get through chemo and targeted therapy and multiple surgeries first, then I spent two years experimenting with how best to manage on this brutal drug, until I finally realized that any managing I did — of the meds as well as the scars and trauma of cancer itself — wasn’t going to bring me back to my old life. I’d just be managing this one for the duration. Which seems like the kind of thing you ought be able to vent about.
In my old life, I was a full-time writer. Now, even with medication to help me focus, I’m lucky to eek out an article a week. I’ve taken up photography to fill in the gaps, and my husband has a stable job keeping us afloat; so I’m not whining. But after years of calling myself a journalist, who am I now? With all these aches and pains and insomnia, can I reinvent myself before it’s time to retire? And why is my situation only to be discussed in therapy, while other people’s job woes are acceptable dinner-table fodder?
Because to survive breast cancer, the marketing gods will have us believe, is to thrive! Ever visit a breast-cancer website? More smiles than a dentist’s office. The women in colorful head wraps are smiling, their doctors are smiling, a young woman so beautiful she makes you want to go bald is smiling. And the survivors with their exciting new short haircuts, they grin, sun-washed faces like they’ve just returned from a wellness resort. There’s no fear of recurrence in their eyes, no hint of any long-term issues or complications. This airbrushed reality is held over the rest of us, setting us up to sound bitter or lazy if we aren’t 100% happy as soon as we’ve “beat” the disease (and what does that mean, exactly?).
For me, it can mean the world is no longer looking at me, with my asymmetrical cleavage and chin hair and refusal to pretend that post-cancer life is all pink and pretty. It means I lost friends who couldn’t take the heat, and I struggle to find time for the good ones because I absolutely must go to bed early, even just to toss and turn, if I want any hope of functioning the next day.
Since I found my first lump in 2010 (there were a total of three between then and my bilateral mastectomy in 2015), I have been lucky — a word I utterly hate in this context — to live near top-notch cancer hospitals and to nab appointments with pioneers in the field (calling moments after somebody else cancelled type of luck, hence my willingness to call it such). I’ve had no serious complications, no infections, no procedures that didn’t yield the expected results, no allergic reactions, no fertility concerns (I already had kids), and none of the potential side effects at which you can’t throw yet another drug. My point being that even with such a fortuitous run-in with it, breast cancer savages much more than breasts.
I bear multiple scars in every quadrant of my body. My brain is soup (except when a new ache or itch might be cancer again, then I’m lucid as hell). My liver protests the slightest sip of a cocktail. I can’t Rollerblade with my children because I fear shattering my bones if I fall. And this is just the wreckage from surgery and chemo. Hormone therapy, which according to the latest research I should endure for 10 years, piles on the insults: stiffening my joints, cramping my muscles, wrinkling my skin, making sex painful (if I’m even in the mood) (and by the way my fake boobs are numb), and growing hair on my cheeks and chin. Meanwhile, hair’s still missing from my brows and lashes.
My biggest challenge, though, is staying sane under the pressure to keep all this a secret.. Without estrogen and progesterone, I’m a miserable, volatile beast. One anti-depressant — out of six that I’ve tried — takes the edge off, barely (and causes a tertiary set of problems, but I give up). I don’t recognize myself in the mirror, especially if I’m naked, but I don’t feel like myself anymore to begin with, so I guess that works. Or would work, if I lived in my own private universe. In the real world it takes a toll on everybody around me. My husband has lost the woman he married. My daughters are relearning how to get what they want from me, which sounds cute but is actually heartbreaking.
A few nights ago my car was broken into — no big deal, but I teared up when I realized my favorite sunglasses were gone: an oversized pair that I relied on through chemo to camouflage my bald eyes and forehead.
“Maybe it’s a sign that you’re done with cancer,” my teenager said, giving me a sweet hug. I didn’t contradict her. Sometimes, the hardest part of life after cancer is moments like this, when I wish I could keep the suckiness a secret from people I love.
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February 2019

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Not much to say, really as life just goes on…

I’ve been struggling a lot, mentally as well as physically, with the changes the hormone therapy has had on my body.  I feel as if I’ve aged at least 20 years.  It’s officially 6 months today and supposedly that’s when all the symptoms should have appeared.  And appear they have although I know, and my oncologist has said, that I have gotten off really well.  However, my feet and legs throb of an evening and I often have to apply heat to bear it.  I can barely get out of the car.  When I stand up, I hobble like an old Japanese lady with bound feet for minutes until the stiffness and pain settles.  I can’t grip things properly or take my weight on my arms to push myself up if I’m kneeling or squatting.  My knuckles are thickening with arthritis already – God knows what they’ll be like in 5 years, and how much of this will reverse once I’m off the drug.  During the heat wave recently, my wedding and engagement rings were cutting into my finger but I couldn’t get them off over the knuckle.  I had to wait until the temperature dropped and painfully work them off.  The skin under them was left red and peeling.

The oncologist has suggested glucosamine for a month – apparently, it works for some to alleviate symptoms but does nothing for others.  If no joy, it may be off to a rheumatoid specialist.  Oh my – more doctors.  This disease just keeps on giving.

I’ve been back at work for a few weeks now after the holidays and it is definitely taking it’s toll as I am exhausted.  Oh well, only 8 weeks to go until the end of term!  Ha!

I’m whinging a lot, aren’t I?

At least I only have to drive to one place each day (or James drives) as Elena started high school last week.  She’s in Year 8, Francesca’s in Year 9 and James is in Year 12.  I think we’re in for an interesting year.

Yesterday was the 10th anniversary of Black Saturday and there have been a few things on telly about the survivors.  It has been interesting to hear about the post-trauma recovery of some.  Bringing it back to BC – trauma is trauma regardless of the cause and it certainly has parallels.

February is always an emotionally mixed month for me.  Last week on the 1st marked 19 years since Mum died and I still miss her all the time.  The following day was James’ 17th birthday – don’t know how that happened…surely it was only yesterday that he was a toddler.   David turned 50 on Tuesday – don’t know where that time went, either.  And Sunday will be the 20th anniversary of my big sister, Lori’s death from breast cancer – thinking of you, Lolly Lamb.

I shall now drag my aching body from this chair and hobble out to get ready for work.

 

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And so this is Christmas…

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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.

 

 

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Scanxiety Update

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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Scanxiety?

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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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Loose Ends

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I’ve been putting off writing this entry because I’m a little at sea after the last couple of weeks and I’m not really sure where my thoughts are.

With active treatment over, it has been time to try to recover as much as possible and get ready to re-enter the world as I used to know it.  There have also been review appointments to deal with which have been a mixed bag.

I saw the surgeon a couple of weeks ago for my 6 month review post-surgery.  He’s very happy with how things have gone and seems to be under the (mis?)apprehension that I have coped really well with the treatment.  I would hate to be someone who didn’t cope!  However, I think that is part of his manner – he does make you feel like he’s completely focused on you and your treatment.  So, he answered all of my questions.  This time, when I mentioned anxiety about the other breast, he didn’t dismiss it but said that he understood and that if it became too much, I could consider taking it off at the same time if I was going in for reconstruction (that’s because they can only do the tummy fat surgery once).  Then he dropped a bombshell.  I was quite happily going along thinking that the reason my cancer got so advanced was that it had been sneakily growing as lobular carcinoma does, but very slowly as the biopsy marker showed a Ki67 result of less than 10% (double-dutch, but means slow).  My surgeon pointed out on my path report the word “pleomorphic”.  That means that the cancer was extremely fast-spreading – from zero to 4.5mm and into 3 nodes, it may have only taken 12 months, perhaps as long as 2 years at the absolute outside.  I honestly don’t know whether that was mentioned at the beginning as there was so much to take in then.  I felt, and still feel, as if the rug has been ripped out from under me.  I am reeling from this and my anxiety level has definitely gone up a good few notches.

We also discussed (as mentioned above) the possibility of reconstruction.  It would be a lot less expensive than I thought and I do trust him to ensure that it would be done well, although I know that it’s never perfect.  Now that the warmer weather is upon us and the summer clothes are in the shops, I have held back the tears on a number of occasions when I’ve realised how restricted I am now in what I can wear.  And that I’m going to be sweltering under a lump of silicon to look “normal”…  I wonder what Taryn Brumfitt and her “Embrace” movement would make of that?  Then I think of what the impact of major surgery would be on my poor body that has been through so much this year.  Of course, it’s not all about clothes and I do have a split personality thing about the body image.  But I feel like I’m in a no-win situation, here.

I have also had to make my appointment at the end of November for my first mammogram since the fateful one.  It’ll be the 3D variety this time.  I have to say that I’m trying to block out too much thinking about that.  I suspect that come the time, I will be a quivering mess and no doubt, there will be tears.

On a positive note, I seem to be adjusting to the hormone therapy relatively well.  Some minor side effects (I think they’re related to it) but not the crippling issues that some women have.  And the burns from the radiation have almost gone.  I have to be extra careful in the sun for a while – probably to some extent, forever.  I had my review with the radiation oncologist on Tuesday and he was very happy with my recovery.  Apparently, I can look forward to shooting pains as the nerves try to regenerate.

I finally got the port out recently, too.  As it was to be done under local, I drove myself down to the hospital for a 7am checkin.  I looked to the right while the surgeon did a lot of pulling and tugging and we chatted about the vinyl I was selling and which bands we liked when we were young.  It was all over by 9am and I was on my way home about 30 minutes later.  It was quite sore for a few days and I have to admit to being a bit anxious about walking around with a healing hole in the major vein next to my heart, but I’ve survived so far.

I’ve been a bit more sociable recently, too.  A couple of weekends ago, I was the proverbial butterfly!  A local breast cancer fundraiser on the Friday night (where I met James’ Maths teacher – it’s Adelaide – go figure).  On the Saturday night I was able to treat my lovely friend Katy to the movies (using the gift voucher that work gave me) as a very small thank you for her very big support this year.  We went to see “Ladies in Black” which was truly delightful.  It’s the only word for it.  I kept finding myself smiling throughout.  And on the Sunday, I met the “girls” (we’ve known each other for nearly 40 years so girls is a bit of a stretch) for our long overdue Christmas in July which we renamed Spring Fling for the occasion!  A lovely weekend but oh so exhausting.

I’ve also touched base with people at work to try to prepare myself (and them) for my return next term.  I’m looking forward to it but I know that it’s going to be a big shock to the system.

Today I’m off to the Annual St Andrew’s Hospital Breast Cancer Luncheon (ooooh – sounds posh?) at Prince Alfred College.  No idea what it’s about but I suspect they’ll be wanting money from me at some stage in the proceedings.  Or am I being cynical?

One thing that I am enjoying is the school holidays.  For the first time since the diagnosis, I am able to actually feel like I can be part of them, too.

Of course, this is October so I should remind everyone that it is Breast Cancer Awareness Month.  There is a recent campaign going on to remind women that, although Breastscreen pushes the screening at 50, you are actually entitled to a free breast screen from 40.  So book in, lovely ladies, if you’re not already doing it.

This brings to mind the new campaign with Serena Williams and the reprise of the “I Touch Myself” song for the ad.  Really?  I have to ask, “why”?  When the group of Aussie women singers did it, it was as a practical tribute to Chrissie.  I have to say that I don’t think this new campaign is particularly well thought out – just lazy.  And do we need another big money reminder of the value of feeling for lumps?  Not to say that it should be forgotten but I do believe it’s time to focus on other aspects of self-examination.  Too many women don’t realise that a lot of breast cancer does not show as lumps.  Skin dimpling, inverted nipple, redness, persistent itch, pain, a slight thickening under the skin (apparently, I had that but I couldn’t feel it and the doctor at Breastscreen wasn’t positive she could, either) – these are all common symptoms without there being a palpable lump.  Surely, it’s time to move on with different advertising – women are dying out there because they never found a lump and didn’t recognise the other symptoms.

Please, please, please, go and book your screening mammogram if you haven’t had one!  And now I will climb down from my soapbox.

All in all, very mixed emotions this time.

 

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Birthday Memoriam: Lori

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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.

 

 

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Recovering

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…