Author: Gaye Howe

(You can comment on by clicking on the entry title)

Okay, it is now Day 10 of my last cycle of AC – that’s Doxyrubicin and Cyclophosmamide to be exact, colloquially known as the Red Devil – and, while it hasn’t been as bad as I feared it could be, it’s knocked me about a bit and taken me much longer to come up for air.  At the moment, even water gives me indigestion and I have as much energy as the koala slothing in the tree outside.  But I am slowly improving which is the main thing.

Lots of appointments this week, mostly to do with recovery.  I’ve still got the cording happening, although I’m slowly getting more movement so I was back to the physio for laser therapy on Thursday.  I’ve also had to have blood tests to see how fit I am for rehab.  Yesterday, I had an ECG to check my heart (chemo can do nasty things, apparently) and, although the girl doing it kept a poker face, I wasn’t too concerned.  However, my next appointment at the rehab place included testing my current fitness levels to devise a programme for me and the physio was reluctant to put me on the exercise bike because my resting heart rate was concerningly high.  Now, of course, I’m worried and I won’t find out for another couple of weeks when my oncologist is back from his holidays and I have another appointment with him!  Hopefully, it’s just a temporary side effect.

The blonde me is still getting comments – I feel a bit like I’m from an episode of The Avengers (the 1960s English series, that is).  I’m sure I remember my friends’ Mum having hair very similar in colour and style.

I feel like I have missed so much of the school holidays with the kids as I’ve spent so much of it in bed or feeling sick but I guess there’s still a week left and at least a couple of days of sunshine in that so we’ll have to try to make the most of it.

Eleven more days until I can officially say that I made it through the AC Chemo, then it’s on to 12 weekly cycles of Paclitaxel which, while it has it’s own side effects, is supposed to be much easier to tolerate for most people.  So, I can almost tick one treatment off and get ready for the next.

(Please click on entry title to add comments)

Please forgive any typos as I’m just coming out of chemo day and the fingers/brain connection doesn’t work so well…  This is something that has been bothering me for a few weeks so I’m getting it online for all of my friends and family and hopefully for you all to pass on to others.

GET YOURSELF CHECKED FOR BREAST CANCER.

You’ve probably heard the stats; 1 in 8 Australian women before aged 85; 49 per day; over 17000 Australian women per year (and nearly 300 men).  That’s a pretty wide ranging bullet.  Some of those people will have family history – many of them haven’t.

Different states (and countries) do things a little differently.  In South Australia you are eligible for a free breastscreen from age 50 (earlier I believe if there’s significant family history).  There is no excuse not to do it.  It takes so little time.  Yes, I know you’re busy with everything else and I know that you’re scared about what might be found.  But believe me, whatever may be there is not going to go away by not finding out and the sooner something is discovered, the easier the treatment.  And breast cancer can be treated – with treatments improving all the time.

And by all means do you own checks at home in between.  But not all breast cancers are lumps so find yourself a bright mirror and examine your breasts – nipples bleeding or retracted or flattened; check your skin, under and over, and look for anything that doesn’t look right – flattening, dimpling, pulling, whatever and go to your GP.  If your GP dismisses it, take it further.  Many are great with this but unfortunately some can be dismissive.

The pics a bit over the top but shows a good range of symptoms

Breast cancer can strike from teens and upwards but seems to become more common in the late 40s and up – an age group that I know many of you are reaching or have arrived into.  If you are in the lower age group you may need more than a screening mammogram so if you hear “dense breasts” mentioned, then follow it up and ask for an ultrasound at least.

In my particular case, my cancer did not present as anything I could see or feel.  My screening appointment mammographer (amazingly eagle-eyed ) saw something she didn’t quite like the look of so I was referred for a recall.  My particular little bundle of joy, Invasive Lobular Carcinoma, never forms lumps as instead it travels along the planes of the tissue.  It was seen clearer on ultrasound, barely at all on a CT Scan.  But it was there and already spreading.  My worst news – but for this sort of cancer, caught early.  It’s often not found until already well into the rest of the body.  My current prognosis – cancer gone but chemo, radiation and hormones to mop up any micrometastes that may have escaped.

Am I pleased to be going through this?  Well, any of you who have been following this blog will know that I’m raging most of the time.  Am I thankful that this has been picked up, being treated, although oh so brutally, and that hopefully I have the opportunity to see my kids grow up and to enjoy my life after this interlude is over?  Absolutely.

So, my hope is that those of you who are reading this, make an appointment if it’s time for a screen (honestly it’ll take about 30mins out of your day), and if you’re not due or yet eligible, go on checking your breasts regularly.  This goes for the blokes, too – not so many of you get breast cancer but I believe that the ones that do usually leave it late.  And if you find something – do something about it.  And pass this on to your friends and family.  There’s no excuse good enough not do it.

 

(Please click on entry title to add comment)

Life goes on and I’m in the better part of the treatment cycle.  We went to the shack for the Easter break, spending it with Dave’s family but for the first time, without his Dad which was sad.  However, the weather was beautiful, the tide remained fairly high most of the time and I managed (as did others) to get out in the kayak a bit as well as change my walk venue from roadside to seaside – no worry about cars out on the sand.  And I read a couple of books out on the verandah.  The beach is definitely soothing to the soul.

My appointment with the lymphoedema physio paid off as I’ve definitely got better movement in my arm and the good news is that there’s no evidence of fluid buildup, but I do have to get my strength back slowly.  And apparently, gentle kayaking is good for that!

I am in the better part of the chemo cycle which sometimes makes me feel a bit of a fraud, but then I overdo it and realise that I’m really not as well as I think.  I picked up the kids from school the other day and as I had to wait for sport to finish, I called in to the office to see everyone which was really nice.  But just hanging out chatting and then the drive, left me so tired.

I got a wig yesterday – not sure how I feel about it but figured that if I was going to wear one I might as well have a change so I’m going to be blonde sometimes!

Counting down now to the last of the vicious chemo – my final dose is next Thursday.  Some say that the last one is as bad as the first so I need to make sure that I’m as fit and well as possible going into it.  Not so easy with all of the bugs going around.  Then it’s on to the second part of the chemo treatment which is 12 weekly doses of Taxol.  It’s not supposed to be as bad for most people but can have significant side effects so not sure I’m ready to see how it goes.

(Please click on entry title to comment)

I’m sitting here at 4:30am on Sunday morning, listening to the rain pelting down, and thinking about the last week and the week to come.  The weather we’ve had is just a reflection of the rollercoaster of events.  Last week’s beach excursion seems so long ago.

The week started with a small celebration for Elena’s birthday.  A couple of weeks early as chemo will affect my staying power on the actual day.  She had a couple of friends for a sleepover and I’m still paying for the hike that I took them on up the back.  I may be able to walk 5km but apparently not on 45 degree inclines.

On Tuesday, I finally met my distant American cousin, Wendy.  The US connection is due to my great great grandfather’s brother taking his family and following a prophet to Michigan.  We had a very nice day – some kangaroos made an appearance but the koalas and echidnas were running late it seems, as they didn’t show themselves until later.

Later that evening, David’s Dad passed away.  Expected, and very much a welcome release, but still hard for everyone.  Much of the rest of the week was concerned with funeral arrangements although David was ambulanced to hospital on Thursday with what was diagnosed as a possible kidney stone.  He’s fine now, it seems.  (And note to RAH food outlets – if you’re going to charge a small fortune for a roll, the avocado should not be crunchy!)

Personally, the days have been up and down.  I have tolerated the chemo much better this time with only minor issues once the worst of it was out of my system, but I’m, oh so tired.  I tried to read a book yesterday afternoon and dropped it twice in as many minutes because I’d fallen asleep.  Gave up then and had a nanna nap.  But then, I’m awake at 2am and can’t get back to sleep without medicating.

And it seems that I’m in the group for whom the cold caps only partially work.  I knew that I would get some thinning, which I have been since the first treatment, but on Wednesday I noticed that I’ve got a bald patch on top.  I’m really thinking that I don’t want to go through the hours of torture of having my head frozen if it’s not going to work properly.  And it does freeze … last time the nurse had to wait to take the cap off because it was stuck to my hair with ice!  So it may be beanies and wigs for me.

On Friday, a lady came up to fit me for prosthetics and bathers.  Which is amazing – we can’t even get tradies to come here.  Got some lovely new bathers so I’m ready for swimming now without scaring the crowds.

Yesterday, I went to a special cancer workshop on makeup and wigs, etc.  I was looking forward to it as I thought that I would get some tips on tricks to overcome the effects of chemo.  I was surprised at how very anxious I was going into the workshop with a bunch of strangers and I don’t really know why – it’s not the way I would normally feel.  But nothing’s normal these days.  I did get a bag of makeup, mostly up-market brands, and I can honestly say now that $35 lipsticks are absolutely no better than the $5 variety that I usually buy, and that follows for most of the products.

The week ahead is going to be a busy one and there’s always things I’m trying to get done before chemo knocks me out.  We have Ted’s funeral tomorrow which will be a long and, no doubt, emotional day.  On Tuesday, I have a review with the surgeon and I have a list of questions ready for that.  I’m also waiting to hear about an appointment with an exercise physiologist and I need to arrange an appointment to deal with cording from the surgery but I doubt I’ll get time to do it.  Then, on Thursday, I have my 3rd chemo treatment which I’m quietly dreading.  While I’m having that, my wonderful friend, Sheryl, is stepping into the breach and driving halfway across Adelaide to pick Elena up and take her to the primary schools state swimming championships at Marion.  Which is wonderful because she would have been devastated not to be able to take part (Elena that is, not Sheryl).

I’m really not looking forward to the chemo diffusion but I keep telling myself I’m halfway through the nasty stuff and if measuring in time, I’m quarter of the way through this part of treatment.  Onward and upward…

(Please click on entry title to add comment)

Yesterday was a day of contrasts.

It was my in-laws’ 56th wedding anniversary and my father-in-law’s birthday.  Of course, we went down to visit but as Ted is under palliative care at home, it wasn’t the celebration that it would normally be.  More a recognition, I guess, of the years that have got both him and Jenny to now.  A hard time for everyone and my thoughts and love are with them, and with my sister-in-law, Wendy who is taking so much of the burden on her shoulders.

From their house, and being a 35oC day, we continued on to the beach for the late afternoon.  Since the diagnosis, I have been to the beach once, which was a couple of days before the first surgery.  And, as a beach girl from way back, I have spent the summer desperately wanting to be there, and resentful of losing the opportunity.  Most of the last 3 1/2 months have been spent being unwell in some way, recovering from being unwell, or preparing to be unwell – and absolutely no swimming allowed.  Those of you who have been following this blog will have noticed a definite negativity colouring recent entries.

Well, yesterday we went to the beach!  We spent hours lounging around in the water (only Semaphore – I’m not up for big waves, yet).  The kids all decided to have fun and be part of it and there’s never any guarantee of that with teens and tweens.  But they knew how important it was to me and rose to the occasion.   It was wonderful.  Even queuing for 30 minutes in the fish shop wasn’t a burden.  We took the food back to the foreshore and ate our fish and chips with the sun low in the sky and finally left after watching the sunset.  One of those simple but perfect family times and a bit of normal after so much that hasn’t been normal.  I’ve known that I’ve been yearning to go to the beach for weeks but I just didn’t realise the restorative effect it would have on me.  I think the bandicoots have left the building for the immediate duration.  I think I have some of my positivity back.

So, I’m sorry if I’ve been bringing people down with my gloomy posts, lately.  Thank you if you’re still putting up with me.  It’s obvious that I need to factor in the occasional time like yesterday.

(Please click on entry title to leave comment)

This might be a long post as I’ve been feeling a little philosophical today.  Possibly brought on by my husband who, in his CFS role attended a fatality nearby yesterday, and thinking that who knows when things are going to be over for you.  Possibly brought on by a fellow breast cancer network member’s discussion over words and their meaning that I read at 5am this morning when, as usual, I wasn’t sleeping, and that awful, awful term used for breast cancer, “a journey”, .  More than likely, a bit of both, with some other stuff thrown into the mix just to churn it up.

For me, words have always been important – their shape, their meaning, their sound…words, wonderful words.  For me breast cancer has certainly not been a “journey”.  I’ve disliked that euphemism ever since diagnosis (hadn’t thought about it before that).  For me, a journey has positive overtones and I’m not finding an awful lot positive about this at the moment – although that may come.  It certainly has been a life experience.  But I call it what it is – cancer.  Is it a death sentence?  That I don’t know, yet.  According to the surgeon, it is almost certainly not and the torture at times being inflicted on my body is supposed to make that more certain.  However, it has been for some around me.   But then, life is a death sentence and you can be driving down the road, doing the right thing and suddenly another car flies out of nowhere and you are gone.  Maybe, you were perfectly healthy, maybe not.  But your friends and family will still be left wanting and wondering.  One of the most difficult things I find about cancer is being taken out of time and place.  It is all consuming.  Three months ago, I was planning our summer holidays, then “WHAM“!  I felt perfectly healthy until the cancer was treated and my/our world tilted on it’s axis.  Who am I and what meaning do I have in my life? – at least the “my life” that I want to recognise.  And how will I shape that life back to something real for me once this is done; assuming that it is ever done?  I really resent the time it is taking from my life and my family’s lives and the impact it will have in the short and the long-term.  I resent the fact that the person who has never been happy without a book in hand has only been able to read one book in 4 weeks.  Will I still be able to be the weird mum who jumps on the skateboard or climbs the ropes over Taronga (almost ended in disaster, that one)?  And when do I stop feeling like an invalid?…participating in the world from the sidelines because I can’t do this or stay awake for that.  I can only hope that it has some positives in the end as any true life experience should.

But I know that someone, out of the blue, never made it home to her family or friends last night, through no fault of her own, and there are many variations of those someones out there.  I’m still here in whatever shape or form that currently resembles.

…And my daughter’s friend’s mum saw me this morning and pulled over to say she’d heard my news and was I okay, which was lovely.

…And a gorgeous, bright, happy bunch of flowers arrived this afternoon from my work colleagues and made me smile when I needed it.

…And generous strangers have my back (because they’re doing it, too) on the online network when I can’t sleep in the early hours of the morning.

…And my wonderful family are struggling through this with me.

It still doesn’t help me to recognise myself or my direction but I suppose, as long as I’m heading somewhere and have some control over what that might be, I hope I will have some say in who I become, even if it’s not who I was.

(Please click on entry title to add comments)

Well, I think that I’ve survived the second chemo infusion much better than the first.  Lack of trauma from the first port debacle has no doubt helped that.  I think the excercise I was able to put in before the second treatment and the different drugs they’ve given me to combat the nausea have done a lot.  The down side of that is a lot of sleeping but that’s better than the alternative of last time.  The other weird thing is that I can no longer really touch-type – hopefully that’s a temporary thing as I wasn’t really doing much of this by Day 5 last time so maybe it’ll come back.

I managed my first 5 km walk yesterday – painfully slowly so will see how today goes.  I’m absolutely convinced that it helps.  I want to access some other services to get back to normal as soon as I am able.  2 of the nastiest treatments down now – 2 to go.  Then I get to see how I respond to the rest.

My 16 year old is now the proud owner of a learners’ permit and I still haven’t had a chance to go in the car with him.  I did get the obligatory photograph with the “L”s though.

Francesca turned 13 yesterday and I managed to spend a bit of time with her while I wasn’t asleep.  Not ideal but better than it would have been during last treatment when I felt so sick the whole time.  She seem to take it okay but a very subdued birthday compared to others.  Her purple cake turned out Tardis Blue (oops- bad coordination with the food colouring) as can still be attested by my blue fingers but she took it in very good form.  Not much left, now.

Crossing my fingers that this treatment continues in the way it is going.  It’s seeming mostly doable but that could be because I’m sleeping so much.  Cold cap wasn’t so bad last time although I had to wait quite a while to get it off as there was so much ice built up on my hair.  However, I am thinning a lot so may have to make a decision before next time as to whether to bother continuing.

A quick entry to say that 2nd chemo treatment went smoothly.  The whole team knew how things had gone before and were both careful and reassuring.  The cold cap was bearable.  The pre-meds were tweaked to help stop the nausea I had during last treatment and I’ve got the stronger stuff for at home.  I know that the meds will wear off at some point but at the moment, I don’t feel too bad, just extremely tired.

And a big thank you to the Alexander family and to Wes and Cass for looking after our kids after school.

(Click on entry title to add comments)

Okay… it’s the night before the 2nd chemotherapy treatment.  I’m feeling very anxious as the plan is to use the port tomorrow.  I’m about 95% sure that the doctor is right and it will all work fine.  But obviously not completely convinced.  I know they will want me to take something for anxiety but I don’t really want anything that will mask pain as that is my best indicator that things aren’t right.

Oh, and even with the cold cap, my hair started falling out on Sunday.  Not much, so it may be just what is expected, but I guess I’ll find out over the next few days.  The cold cap was pretty painful last time so I don’t know whether I want it to work or not.  I wouldn’t be devastated if it didn’t work but I’d rather know sooner than later.  It was as much to spare the kids as anything else.  I told them that if I went bald that I might get my head tattooed with henna – mixed responses at that!

Well, by this time tomorrow I’ll know how the port worked and I’ll no doubt be feeling awful.  I seem to be missing some positivity in these last posts.  Chemotherapy is not fun.