Category: Breast cancer

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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.

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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…

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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.

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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.

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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.

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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.

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So, it’s 5am and I’ve been awake since 3am and I just know that by late morning, I’ll be done for the day.  My Mum used to have a saying that we always teased her about.  Whenever she was feeling down, she’d say that she was “as miserable as a bandicoot”.  Well, there seems to be a misery of bandicoots around here sometimes.  At the moment, I’m feeling completely fed up.  While the worst of the chemo effects are gone for the moment (don’t watch this space next week because I probably won’t be able to read let alone type), I’m sick of not being able to sleep, feeling exhausted all of the time, not being able to string two thoughts together, and generally being a waste of space.  My neck and shoulders are aching and giving me constant headaches, the muscles around the mastectomy site hurt, I’ve got nerve damage (temporary? permanent?) under that arm which hurts… I miss work and I’m bored but tiredness, risk of infection, and addled brain (plus the ridiculous rules around income protection) vetoes that.  Infection risk means that I’m going to have to meet my friend in a park on Saturday rather than just chill out at her place (sorry, Katy) – I hope the weather is going to be kind.  And I’ve got my fingers crossed that Sheryl and her Mum aren’t going to come down with sniffles when they wake up this morning as I’m looking forward to seeing them today (Shez – sorry in advance about the yawning.  I promise I will stay awake.)

Since the worst effects of the chemo wore off, I’ve been walking 5km each morning before everyone gets up, while I have a modicum of energy for the day.  Hopefully, apart from the long-term survival benefits, this will have a shorter-term benefit in helping me to tolerate the next chemo treatment in a week’s time (I’m so NOT looking forward to it) and maybe recover a bit quicker.  Apart from this and the morning school run (2 hours return trip), that’s pretty much all I’m up for these days.  As I said…waste of space.  And my poor girls…trying to sort some sort of birthday celebrations for each of them around my chemo treatments and whether or not I’m up for them having a friend or two around.  Not fair! Not fair! Not fair!

Okay, ranting over – bandicoots have obviously moved in for a while.

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Okay, after a very brief comment last week (I think?) to let everyone know that I had finally managed a chemo treatment, I promptly shut down for days.  As the treatment had been done at the end of the day, my wakes and sleeps were totally screwed around.  However, the extra nausea drug they gave at the hospital managed to knock me out pretty well until next morning, when my body took over.  I spent Friday drifting from TV shows to bed and back all day – didn’t feel toooo awful as long as nothing got in the way.

Friday night, though, was a horror story…I couldn’t sleep at all, felt sick the whole night (more so if I was laying down) and everytime I looked at the clock thinking that 30 minutes must have passed, I was lucky to have 5 minutes gone by.  This, pretty much continued through the weekend.  On Sunday, I rang the hospital to see if I could up the nausea meds and was told I could double them.  This helped me limp through to Monday.  Honestly, the best I could describe it as is feeling like a vacuous jellyfish – unable to string two thoughts together and unable to support my body on my spine, all of the time feeling sick.  Couldn’t watch telly, read, talk to anyone and unable to sleep.

I rang the oncology people again on Monday to tell them I was really struggling with this.  By 1pm, a new script had been faxed to a local chemist, including a drug that would deal with the nausea better and included a relaxant.   Hooray!  Hell – I don’t care if they think I’m a looney tune needing to calm down.   Not only to I get to feel more human – I can do it while sleeping!  Someone give the doctor a prize!  (And I mean that – no sarcasm intended.)  Personally, I don’t know why there is no chemo suite somewhere… medically monitored but with all us chemo babies kept drugged to the gills while the poison does it’s dirtiest, then when we’re fit for the land of the living, woken up and sent on our ways.  Makes perfect sense to me.  Anyway, given that I’ve now caught up on days of sleep, the drug is not as effective in that sense but the good thing is that I feel I’ve turned a corner today (Day 8), and while not back to normal, at least heading there.  Today is the first day I’ve been able to actually read an email rather than just knowing it’s something I could handle quite well in my former life.  I’ve even been able to watch “Shetland” and understand it (well mostly, I have to say I still get stuck on the odd accent.)

I know I’ve got to be careful as I’m now inching into the realm of immunosuppression where one little snotty-goblet with poor hygiene could land me in intensive care for days.  So if you have something sniffly – sniffle it the other way from me, please!

My next step is to try to resume some exercise.  I was walking 5 km per day at least prior to chemo but I think I’ve lost a lot of that condition over the past week so I think it’ll be slow progress.

One of these nasties mostly down (2 1/2 more weeks) – 3 more treatments to go!  I’ll worry about the 12 others, later.  This is me being positive…today…don’t ask tomorrow…