Gaye’s blog

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Well, I’m sitting here in the cooling house at 5am in the morning – the fire has gone out and I suspect that it’s probably around 2oC outside but I don’t want to put the air conditioner on or relight the fire in case I wake the kids.

It’s the morning after Paclitaxol No. 8 so I’ve made it 2/3 of the way through this part of the chemo treatment.  Woohoo!  Coping mostly okay at present although I wish the tell-tale tingles in my fingers and toes would stop.  That’s the thing that’s most likely to pause or stop the treatment if anything does.  Tony Michele, my oncologist, was happy to do the treatment yesterday as last week it was still mild and intermittent, but that can change at any time.  He explained that when the chemo starts affecting the longest nerves in the body, which are the ones that run to the fingers and toes, that’s a sign to proceed with extreme caution.  If the issue becomes constant, I will have to have a break to recover and possibly lower the dose, or stop altogether to prevent the possibility of the neuropathy becoming permanent.  I’m hoping that I can make it at least until No. 9 before that happens (best case would be all the way to 12) as that’s the magic number – the last 3 are just extra insurance.  But apparently, it’s pretty common for this to happen.  Fingers crossed – while I can still cross them!

On Wednesday, I had an appointment with a genetic oncologist.  I don’t know what type of breast cancer my sister, Lori, had and I haven’t been able to find out details, but it’s always been in the back of my mind as to whether it might be familial.  Given that 1 in 8 women will get breast cancer, the specialists have been quick to point out that it is highly likely that it’s just coincidence.  But I have still been anxious and concerned that if it is genetic, I may have a time bomb waiting to go off in the other breast and that even with increased monitoring, it may be difficult to detect early.  Even when it was discovered, my cancer was hard to see in all of the tests.

To get to the point, the genetic oncologist discussed my family history (which is a mess of generations and unknowns – apparently not uncommon as cancer was often not talked about) but her main point was that Lori was 32 when diagnosed which is really young, I am 54 which apparently is still on the young side, Lori constitutes 100% of my siblings, and in her opinion, this is highly likely to have some genetic basis.  Most people know of the BRCA 1 & 2 genes that predispose to breast cancer but there are a number of others, and it seems only about 1/4 of these have been truly attributed to breast cancer.  There are a lot more genes that are likely or possibles that are still considered to be “normal” until proven otherwise.

The upshot of this is that I get to decide whether to take the blood test to see what I am dealing with.  The results from the test could be conclusive or could go in the “wait and see until we know more” box.  The results could be scary stuff but could also tell me whether I’m at a high risk of developing another primary in the left breast, ovarian cancer, or should be getting screened for other types of cancer more carefully.  Of course, these genes just predispose us to cancers, with lesser or greater propensity, and I suspect that as years go by, it’ll be found that most of us have some of them – it’s just whether the link is found and followed.

While in some ways this news just confirmed what has been lurking in the back of my mind for a long time (and to be honest, a murky fear for many years), I was surprised how shaky I was after the appointment, and now, how surreal it feels to hear this stated by an expert in the field.  I guess that you get so used to being told that you’re jumping at shadows that when someone with a torch shows you that some of those shadows really might be monsters, it takes a bit of getting used to.

It has actually been quite a long and tiring week – more so than usual.  And looking at the time, I should probably think about turning that air conditioner on to get the chill off the house for when the kids get up.

 

 

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Okay…so lot’s of poor me’s in recent blog entries but this is how things stand, medically and physically, at the moment:

The oncologist says I’m doing very well (huh?) – my blood tests show that everything is getting nicely knocked out without being at critical levels where they have to intervene.

I am so breathless and tired because my bone marrow is being suppressed, which means in turn that it’s not producing enough red blood cells to oxygenate my blood.  Hence, haemoglobin levels are way down (normal is 150 whatevers, critical is 90, and I’m sitting just above 100) meaning that I’ve not got enough oxygen getting around.  If it gets too low, I’ll need a transfusion.  Sadly enough, that’s reassuring as there’s a distinct cause and effect and mechanism for treating it.

Nausea and aching bones are just annoying side effects of the chemo and should go away once I’m finished.

Not so good is that the signs of peripheral neuropathy are stepping up.  At the moment, this is still just pins & needles, on and off, in my fingers and toes but, particularly since the 7th treatment, it has been more on than off.  The danger with this is that it can turn into numbness in the extremities and if ignored, can become permanent.

Everything is cumulative on this treatment and as it is every 7 days, there is not much time for recovery.  I’m usually just starting to feel human and it’s time to go in for the next one.  On Thursday, the Registrar said that, if it gets too much worse, they may look at giving me a week off to recover some resilience.  I’ll do what I’m told but I really don’t want a week off – I just want to get this over with.  Even worse though, would be that the treatment could be stopped.  No-one is saying that, but I know and they know that it is a possibility.  I’m down for 12 treatments but apparently 9 is the magic number – the rest are just insurance.  Mind you, the hope is that this whole chemo business is just insurance and that there are no cancer cells left from surgery to kill.

The oncologist also told me that I won’t be returning to work at the beginning of Term 3 as I so naively hoped.  Maybe during the latter half of the term, maybe not.  Some will depend on whether the chemo time has to be extended, then there’s recovery, then there’s radiotherapy for an unknown time.  I say unknown because I thought I’d been told 15 days, David thought it was 20, and the oncologist thought it could be more.  I’ll find out more when I go for my appointment with the radiation oncologist in July.  And after that, I will be put on a course of hormone therapy drugs which are likely to need tweaking before the dose is right and liveable.  That’s the next 10 years sorted!

I really do want to get through the chemo, though – all of it.  It is such a draining business, both physically and emotionally.  It feels like it’s never-ending and that this is all there is and all there ever will be.  No matter how much I try to be normal, I have no energy or motivation, positivity has gone out the window, and life seems so bleak.  It’s hard to believe that 6 months ago, before the diagnosis, I felt well and had plans.

Oh dear, I started so well and it seem the bandicoots have moved back in…

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It occurred to me on this frosty morning, musing about it being the first day of Winter, that it also marks 6 months since I stepped onto this rollercoaster.  Exactly 6 months ago, I was rushing around at work, feeling slightly ill with apprehension, trying to get things done so that I could leave early for the recall appointment at Breastscreen.  Little did I know…  Did I have some inkling?  Maybe.  I know that I tried to tidy up any loose ends in the hectic time before the school holidays, making sure that orders were put through, etc.

I remember trying to be positive and not always succeeding, and feeling terribly frightened at the appointment as I was pushed and prodded and had chunks taken out of me.

In some ways, I can’t believe that it has been 6 months but in other ways it feels as if life has always been like this.  A lurch from one treatment to the next with little to look forward to but more treatment.

I started off with bewilderment and fear – swinging from numbness to disbelief to tears, always to a background of white noise in my brain.  Surgery, while scary, was okay – it felt manageable and it was a relief to get the cancer cut out.  I felt fairly strong emotionally, and relatively positive after that.  Chemotherapy, however, has gradually worn me down and I’m only halfway through it.  I do struggle to maintain any positivity, and I feel as if there is a constant shadow over me.  I wonder who I am going to be when this treatment is over and, is it going to be successful?  The doctors seem to think so but I’m not altogether sure that I believe them. Would I feel better or worse if I knew more about my sister, Lori’s cancer?  I look around me and hear people talking about 10, 20, etc years in the future and wonder whether I will be part of that.  And it does scare me.  I know there’s no life guarantees for anyone, but breast cancer is concrete not abstract.  I know there are people in a far worse position than I am but I still feel rage and despair about this.  Why me?  (Someone has to be the 1 in 8, of course, so why not me.)

I realise that my blog is tending towards doom and gloom these days and I think sometimes that I should lighten up and not bring anyone reading it down.  But then, this is real and, while my aim is still to update anyone interested, it’s also a record of my experience.

So, 9 out of 16 chemo treatments down and hopefully, 7 weeks to go (fingers crossed that I can make it to the end).  And maybe some answers about genetics in the meantime.  Then, it’ll be on to radiation for 3 weeks and I’m hoping that doesn’t make me feel so awful.

Just so over it!

 

 

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Okay, so on Thursday I went in for No. 4 of the taxol part of this regime.  My appointment was extra early so getting the kids of to school and then over to the clinic was a bit of a challenge but of course, the bonus would be getting out of there early.  So you would think…  The first part of it went okay – bloods taken, first appointment for my oncologist so no waiting there – then I get told that there’s a problem with the bloods and they have to be sent off for further testing.  “Go away, have a coffee and come back later.”  Well, I don’t know for sure how long “later” ended up being (somewhere around 1 1/2 hours, I think) but for most of that I was on the verge of tears.  Who’d have thought I’d be upset at the thought of not having chemo?  I hate it, but it seems I hate the idea of not having it, or it being delayed even more.  Well, finally the results came back and I’m not even really sure what it was all about except that it wasn’t anything to do with me.  Chemo went ahead and even quicker than usual as I no longer have the pre-meds.

A couple of dozen eggs and a bucket of persimmons greeted us at the back door when we got home!  (Thank you, Janet – don’t know if you’ll see this in Nepal? but enjoy your travels!)

This treatment has taken a bit more out of me.  After the usual chaos of school pickup and meals, etc, I fell asleep on the couch at about 6:30pm only to wake up about an hour later and take myself off to bed until after 4am.  I felt really good then and happy to do the school run.

I had booked Elena and I on the high school tour that day so she could get a feel for classes next year.  I went into the Hub (where I work) to say hello and it got me thinking that maybe I could be doing a day a week or something like that as I do miss working.  However, by the time we were halfway around the tour, I was surreptitiously leaning on lockers for support, then I had to get Elena back to her school.  By the time I was driving home, I was seriously concentrating on just getting there.  So, maybe no work, just yet.  I do envy those people who just seem to cruise through chemo.  I know I’ve been fairly lucky with the side effects so far (fingers crossed), but I don’t know how people can do a productive day at work with it.

So, I’m quarter of the way through the taxol part of the treatment (with some expected pricklings in the fingers and toes but no serious side effects as yet), halfway through the total doses of poison, and I think around two thirds, timewise, through the chemo treatment (the brain refuses to calculate properly).  While I’m not enjoying it at all (let’s face it – chemo is crap), I really want to stay well enough to complete the treatment.  And be well enough afterwards to be able to enjoy life.  So, everyone please send any positive thoughts to my poor fingers and toes!

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These thoughts started as a response to a discussion on the online network but I felt that it’s importance to me meant it needed it’s own spotlight.  The discussion was about disclosing a breast cancer diagnosis to others or whether to keep it secret from some.   That started a train of thought on my part that if someone has a problem dealing with me having breast cancer that is their issue…I can’t deal with their hangups, too.

The only concession I make is head covering when I’m out of the house and a prosthesis “in public” – that is more about being sensitive to my immediate family than me caring what the world at large thinks.   Though, I get the odd weird comment if I’m not wearing a wig.

I do wish that “out and proud” was more socially acceptable.  Given that 1 in 8 Australian women get breast cancer (predicted 18,000 women this year), I wonder how many of us are walking around wearing an uncomfortable prosthesis or going under the reconstructive knife just to appease social norms.   Will I go down the reconstruction path?  Possibly.  But not because I have a problem with my self-image.

I know there’s been exhibitions, etc, of women with mastectomies but unfortunately, even with the best intentions, I think they edge towards the label of “freak show”.  What would happen if it was just normal to see women without a breast/s?  Would the world stop or fall apart, or would our society accept that shit happens and there goes a survivor?  Yes, I’d love to be as I was but I’m not and that’s just the way it has to be.  At the moment, I’ve got an ugly scar that’s giving me a bit of grief but that will fade…and anyway, it’s a badge of survival.

And to take it further, maybe the idea of a mammogram would not be quite so frightening to other women if seeing the possible end results of a positive one was the norm and not the end of the world.

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It’s early on Friday morning and I had my second taxol chemo yesterday.  So far so good.  While recovery from the first one saw me dreadfully tired and feeling ill on and off, it wasn’t as bad as the nasty stuff.  Just feeling better in time for the second one!

I’ve lost most of my hair except for a fine fuzz and most of my eyebrows and eyelashes – not happy about the bald-faced, chemo-turtle look… I don’t go out of the house without drawing my eyebrows on, but it’s getting harder to follow the lines.  I’ll be doing that for awhile yet as this chemo regime is also hard on the hair.  But I do have some fun with the wigs and scarves.  I was at my rehab exercise place the other day and one of the physios didn’t recognise me.  She worked out that it was because I had a different brightly coloured cap on than the last time she saw me.  I told  her that without hair, I didn’t have to keep the same look every day and could mix it up a bit.  I tend to only use the wig when I’m “out in public” – scarves and beanies the rest of the time and nothing at home unless my poor head gets cold.

Mother’s Day is on Sunday and I really had thought that I would walk in the Mother’s Day Classic this year ( a silly expectation).  Last time I did it was in my sister, Lori’s name, and I had James (a 3 year old at the time) in a stroller, Francesca (a nearly 3 month old in a sling), and I was probably pregnant with Elena but didn’t know it.  Four weeks ago, I would have been fine to do it because I was managing a 5km walk every day but the last AC chemo knocked me so much and I haven’t managed to get my cardio fitness back up.  I’m still getting very breathless when I do anything exercisey and my resting heart rate is on a rollercoaster.  I don’t think it would be a good look to get halfway round the course and have to call the paramedics!  And, of course, I would have the 30km drive home afterwards which knocks me enough.  So, on the calendar for next year…

Mother’s Day will be a bit emotional, I think.  On one hand, I have never really thought of it as particularly special – more of a marketing gimmick – particularly since losing my Mum.  I’ve always told the kids that it’s not a big deal.  But this year I’m finding that it’s a bit of a marker.  While I know that if the cancer hadn’t been found, I would be still thinking the same as before and no doubt would be feeling a whole lot healthier, I also know that I would be facing far fewer Mother’s Days than I expected.  My hope is that my kids will have many years of thinking, “Damn – Mum will expect to see me on Sunday!”  …though if they’re parents themselves, I’ll let them off and they can see me on Saturday instead!

Anyway, life goes on around chemo and trying to conserve what energy reserves I have.  School planning for next year for Elena, James needs new uniform, dentists need to be seen, kids’ social activities to happen, physio programmes done to get back to strength… At least I don’t have to worry about what to feed the kids for lunch or snacks at the moment.  My fridge contains sausage rolls from my talented neighbour, Janet – I just have to control them from scoffing them all at once.  Thanks, Janet!

I’m also looking forward to next weekend when my lovely friends, Leonie, Sheryl, Ann and Robin have organised to have High Tea at my place.   Last time I actually saw most of them, was the weekend I was waiting to go to my Breastscreen recall appointment and was completely distracted but didn’t realise it showed so much and I didn’t tell anyone why.  So, it will be wonderful to see you girls again and be a lot more relaxed!  It’s funny saying “girls” at our age but that’s what we were when we all first met – nearly 37 years ago!

Almost time for the family to emerge for the “getting ready for school” rush so I’d better wind up.

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Okay, so it’s 5:30am on Thursday and I’m as prepared as I can be for the next cycle of treatment.  I start the new chemo regime this morning and that will be every Thursday for the next 12 weeks.  That’s the plan, anyway.  Although this one is supposed to be more tolerable than the chemo I’ve already had, side effects can derail it so some people don’t finish the whole thing.  The side effect I’m most worried about is neuropathy in my hands and feet.  Although I don’t relish the idea of 12 weeks of chemo, I also want to complete it to have the best chance, and I certainly don’t want long-term/permanent problems with walking or picking things up.  So, as usual, I’m feeling anxious.

Recovery from the last chemo treatment has been very slow.  I still don’t feel as if I’m ready for the next bout.  It seems to have affected my heart rate as when it was tested for the exercise programme last week, my resting rate was 112 and over.  It seems to have normalised again now but that was worrying.  Hopefully, I will find out the results of the ECG today and fingers crossed that it’s good.  And I’m still so tired.  There’s no real describing to anyone who hasn’t been here but it is so all encompassing that I sometimes feel like sinking to the floor and crying with tiredness (only that would take energy that I don’t have).  Everyone tells me I look well (and don’t get me wrong – I really appreciate it) but they don’t know that I’ve probably rested before going out in public so I have some energy and as soon as I get home, I’ll collapse with exhaustion.

But saying all of that, compared to many, I’m doing well.  I hear so many stories of women who have ended up in hospital with reactions or infections during chemo, or those who turn up at the clinic only to be told that their bloods indicate that they can’t tolerate the chemo this week (at the clinic last time, one woman had come from Yorkes and had to go back home again).  So, I shouldn’t complain as I have managed fairly well, considering.  I’m hopeful that is the case for this next lot.

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Some of you may have seen this as I shared it on facebook but I thought it worth putting the link here, too (further to my lecture post of the 14th April).

When I watched this, it sent me cold… I could relate so well to both panels.  On the left, although it was a recall from screening rather than something I found,  I remember (and still experience) the uncertainty, fear and grief that she displays.  On the right, it’s easy to imagine dismissing symptoms and going on with life as normal.  Because it’s scary.  Because without treatment you don’t feel sick and treatment makes you an invalid.  But not following through does not make the cancer disappear.  And treatment is the only real option.

Please watch it.

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The last lot of chemo is still making it’s presence felt a lot more than previous diffusions so it’s been a slow process recovering this time, but I am getting there.  I just have to be very cautious not to overdue things in my better moments.

I enjoyed the unseasonal sunshine on Sunday – can’t believe we had 3oC+ toward the end of April but the kids and I took advantage of it and went down to beautiful Seacliff to lounge on the beach and hire paddleboards.  I asked for their largest, most stable board and managed the better part of 2 hours (with frequent rests) on the water.  I was very cautious but still thought that I would suffer for it later.  However, the paddling seems to have done the exact opposite and gently stretched the muscles, giving me more movement back in my right arm and shoulder.  Does this mean I get to do more SUPping?

It has been nice to be able to be a bit more involved in the kids’ holiday activities this week as I resented feeling too ill last week, but it does come at a cost to energy levels, etc.  Even just the drive down to town and back can knock me out for awhile.  I am waiting for the results of the ECG too as I am a bit concerned about pushing myself with such a high resting heart rate.

Oh well, need to hope that recovery will continue in time for next week’s rush back to school.  So many appointments for me and the kids – I’m going to be back and forth more times than usual.  And then a new chemo regime on Thursday.