Author: Gaye Howe

(Please click on entry title to add comments)

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.

(Please click on entry title to comment)

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…

A very brief entry to say that I had the first chemo treatment yesterday.  They tried the port again to see if it was working.  It seems to be and the oncologist thinks it was probably a needling error rather than equipment failure.  However, it was decided yesterday to give it a rest and use a cannula.

Cold caps were horrendous this time – I was a wimp with that.  Drugs went through okay but made me feel very sick by the end – had to have extra-medication.

I’ve spent most of today on the couch or in bed, trying to ensure I keep up the fluid intake.  Very flat.

(Please click on entry title to comment)

Okay, everyone who’s spoken to me or read the blog knows that my level of anxiety about having the first chemotherapy treatment today was a tad high.  Today’s post is as much about setting things out so I can remember as it is about updating everyone so I am sorry it is so long…

Almost no sleep last night then a short walk in the dark this morning to try to quell the panicky feelings.  David got up and I forgot to wish him a happy birthday.  A flurry of showers, packed lunches and school forms followed by dropping the kids  off to their schools before heading off to Calvary Hospital.

Dave got me to the hospital on time only for there to be confusion about admission which didn’t do my desperately held equilibrium much good.  With admission sorted, I was shown into the day infusion area and the nurses explained everything that was going to happen.  The first thing they had to do was to take the dressings off the port site, clean it up, check and flush the line.  The first sign that things weren’t going right was the intense pain after inserting the needle and trying to flush saline into the site.  The nurse noted and conferred with her colleague after not being able to draw blood from the port (apparently it does happen, occasionally) – her colleague notice that the surgery wound was weeping.  The nurse also wasn’t happy with the angle that the needle had gone in so it was agreed that she would take it out, give local anaesthetic and try again in awhile and she also called the Registrar to check if there were signs of infection (there wasn’t).  After half an hour for the anaesthesia to kick in, we returned to the ward and she tried again with a new needle, which hurt, and then flushed the line with saline which again was really painful.

It was decided that this wasn’t going well and they had to check whether the line was in the vein so I was sent off to x-rays.  (By now it was 12:30 and I was expecting to be finished and out of the hospital by 1:30.)  The film was checked by the radiologist and the oncologist so it was thought to be good to continue.

So, back in the ward and I had the cold cap fitted – expected it to be painful but it was quite alright.  Then came time to administer the steroid.  One of the nurses started to inject it but Dave loudly told her to stop – I was in pain again and he could see the fluid moving under the skin.  The nurse explained that this could just be local trauma (although the swelling was new and the handling of the site had been an hour earlier) and that the x-rays showed that everything was okay so they would go ahead with the IV drip of steroid.  Again, it was painful and Dave was watching like a hawk as he was pretty sure that something was very wrong and that the site was looking more swollen than could be explained by trauma.  He even got the phone out to take a photo of the swelling to see if it really was increasing or if he was just imagining it.  It wasn’t long before he called the nurse over to check it and she fairly quickly conceded that it didn’t look right.  She and the other nurse checked to see if the drip was free dripping (?) and it was but by that time the area on my chest over the port was very raised and while the pain was bearable, it was spreading.  I couldn’t see the site at all – all I knew was the burning and throbbing pains I was getting when anything was injected into the port.  And I was getting more and more frightened.

Anyway, the decision was made to stop and call the oncologist who came over to see me.  It seems that many of these things happen but not altogether and it looks like there is some sort of leak or disconnection with the port.  The saline and the steroid were being injected straight into the tissue!  I was given the choice of continuing with the treatment by cannula this afternoon and going back on Thursday for the port to be investigated.  Or, writing today off, recovering a little, and going back on Thursday to have the port scanned using dye and starting the chemo that afternoon by whichever method.  It looks, though, that the port is defective in some way and I will probably have to have a second op to replace it as something is dodgy there.  When the nurse finally “deneedled” me this afternoon prior to discharge, fluid ran out of the site.  Apparently, this should not happen and shows that the steroid was not going into a vein (or possibly some of it wasn’t going in).

The staff at the hospital were very nice but it became obvious that they hadn’t seen this happen before.  (I felt a bit sorry for the reflexologist who kept popping in to see if I was ready for a foot massage only for me to send away each time.)

If Dave hadn’t been there as my advocate, there is a distinct likelihood that the chemotherapy drug would have also been injected into the tissue as the x-ray had indicated that there was not a problem.  The nurses, of course, do not know me and do not know that I don’t tend to break down at the slightest hint of pain.  Dave, however, does know me better than this and he took on the very uncomfortable role of raising concerns even when he was being told why everything was okay.  For the chemo to have gone into the tissue would have been a seriously awful outcome as there must be absolutely no spillage from the veins.  (Dave and I believe now that the weeping wound was probably the saline seeping out of the weakest point in my skin.)  I don’t know what would have happened if the chemo drug had been administered and I don’t want to even think about the damage it could have caused as I know that I have to face up to Day One of chemo again.

So, in at 9:30am for a straight-forward 4 hour procedure.  Most of the day spent in tears from pain, anxiety and fear.  Discharged from hospital at 3pm in discomfort; emotionally and physically drained, and no closer to starting chemo – just more tests to look forward to, probably more surgery and 2 more days to get anxious about how I’m going to tolerate it.

Tomorrow morning I get to meet my radiation oncologist at the Royal Adelaide Hospital.  Yay for me!!!

Oh…and Happy Birthday, Dave!!!

 

(Please click on entry title to comment)

The beginning of February is always a strange time for me.  Today, James turned 16 and I honestly can’t believe that it has been 16 years since I first held him, and David’s birthday is on Monday (chemo day – sorry, Dave).  On the other hand, yesterday was the 18th anniversary since Mum died and, as always, I miss her so much.  Next Saturday will mark 19 years since my sister, Lori died from metastatic breast cancer and I can’t believe she has been gone so long.  So, this time of the year brings mixed feelings and I never know whether I’m happy or sad.

This week, I haven’t been feeling the best physically, either.  It seems to be a struggle to recover from having the port inserted considering it wasn’t major surgery (although it does enter a major vein next to the heart!).  I suspect it’s just cumulative – my body is probably saying, “enough, already”.

And  chemotherapy is looming on the horizon and getting closer all the time.  When it was a couple of weeks away, I could treat it with some detachment.  Now, I’m seriously scared about how it is going to affect me.  So many side effects from having poison pumped into your veins.  I know it is a choice, but it is also a choice I don’t really have as I don’t want to find out in 5 years that the cancer has returned and the chemo could have prevented it.  I’m  really hoping that I’m one of the few people who tolerate it well.  More realistically, I’m probably going to fall somewhere in the middle ground, which will be absolutely awful.  I know that hundreds of thousands of women have done it before me, so I guess I will get through it but it doesn’t make it any less frightening.  Worse would be to be one of those who don’t tolerate it at all.  I am dreading it.

Right now I am trying to prepare for next week (and the weeks to come).  I have been making meals and freezing them – something I haven’t done since I was 8 months pregnant.  I have also been stocking up on anything that I’m likely to need.  It’s not so easy when you don’t live in the suburbs to get that thing you need from the chemist.

The next time I post to this blog, I will know how the chemo is going to treat me.  I may even know if I need to have radiation afterwards as my appointment with the radiation oncologist is on Tuesday… if I can make it.

 

(Click on entry title to add comments)

Well, I had the port inserted on Saturday which was a fairly quick procedure – in at 11:30am and out by about 5pm.  The hardest thing was the fasting so I was very pleased when the meal tray arrived.  Now, I feel like I have two broken wings as the port was inserted on the left side and is very sore.  Sunday was a bit concerning too as I had a bit of a funny turn.  I started feeling crook while I was watching a movie with the family and ended up with my heart racing and dizziness.  Dave was on to the hospital and doctor, as for awhile there I thought I might need an ambulance, but it eventually came good and I’ve been fine since.  Probably a bug, maybe overdoing things, possibly the extreme heat…who knows.  I had worrying images of having torn the vein doing something.  Panicking for nothing!

It was Francesca’s first day of high school, today and she’s been nervous and excited about it.  I went in with her this morning – she looked so grown up in her new uniform.  It doesn’t seem so long ago that I was taking her to primary school for the first time.  I took the opportunity to attend to some things at work while I was there and to catch up with colleagues.  We’re really so lucky that James and Francesca are at that school and that I am fortunate enough to work there.  The support and generosity of my colleagues made me teary in school today and it is making me teary now as I’m typing this.  So many people came and spoke to me and wished me well.  Others were also able to provide some much needed practical help (much more than I could have thought) which I’m sure they are aware is very much appreciated.  I know that with chemo coming up, day-to-day life is likely to get much tougher and it’s going to be so much harder to keep things “normal” for the kids.  Knowing that the school community is supportive, is so important.

Now I am just counting down to chemo on Monday.  I’ve got the port, filled in the forms, had more blood tests… time will tell as to when I get back to this!

I had my follow-up appointment with the surgeon yesterday.  He’s very happy with the surgery results and the biopsy results.  Apparently, I’ve healed extremely quickly and well – if that’s what this is I’d hate to be someone who doesn’t.  Of course, my healing abilities are about to be knocked out of the park by chemo.  He also believes, as did the oncologist, that the cancer is to all intents and purposes, gone.  Which is great news.  However, since there’s no way of telling if I have any microscopic traces floating around my body waiting to land somewhere and metastasise, there is no choice but to hit me with the wrecking balls of follow-up treatment.  Hopefully one day, there will be a cheap, simple and accurate blood test that can determine if those cells still lurk.  Would I trust it completely?  I don’t know…but maybe we’d be able to opt for a sledgehammer instead of said wrecking ball.

Tomorrow morning I go back into St Andrews for day surgery so a port can be inserted on my chest under the skin.  It will go into a major vein (can’t remember which one) so that the chemo drugs can be administered easily.  This means less trauma as I won’t need a cannula inserted each time and will prevent spillage of the drugs which can lead to ulceration, and will also mean that I won’t be looking at most of the veins in my arm shutting down.  Oh, the joys…

(Please click on entry title to add comments)

I’ve just been on my morning walk which is about the only exercise I can do at the moment and is the only thing that I feel is under my control.  It’s always a time for reflection but this morning I was just irritable.  Possible annoyed because I mixed up my appointment yesterday and those sort of organisational things that I have always been on top of seem to escape me at the moment.  So, rather than an update, this post is going to be a rant so please don’t read if you don’t want to hear me whinge.

My walking started with thinking that I’ve got to organise all of the many papers I’ve collected over the last 6 weeks into something that makes sense which led me to remembering the “My Journey” kit that the Breast Cancer Council gives out.  At first, I found that term slightly ridiculous but now I find it incredibly offensive.  Would anyone dream of telling someone with brain cancer, prostate cancer, blood cancer, that it was a journey?  Of course not!  So why is it okay to use those words to describe breast cancer?  My desperate and pathetic attempts to escape the clutches of the monster from Hell… yes… journey… no!  Excuse me while I have bits of myself cut off, have myself poisoned and irradiated – doesn’t sound like much of a journey, does it?  And while I’m at it, that awful pink lady toilet logo.  I’ve never described myself as a lady and I’ve never been fond of pink with all the girly connotations it has.  It’s all so sweet and twee and slightly patronising.  It says “there, there, you’ll be fine” just don’t make a fuss.  And that leads me on to the rubbish about being strong because women are.  Sorry, to me that just says “put up”.  I’m just a woman.  I’m no stronger than a man.  I take things step by step as otherwise it would be overwhelming; I have times when I’m positive; I have times when I’m teary; I have times when I’m angry as hell.  The only difference is that our culture has this myth about women and their ability to deal with stuff and we all buy into it.

Okay, don’t get me wrong… I’m truly appreciative of the support and care I’ve been able to access and the fundraising and awareness that has enabled treatments to improve and keep improving.  I’ve just never liked being put in a box because I’m female.

End of rant for now.

(Please click on entry title to add comments)

Thursday afternoon, I was sitting in the GP’s waiting room before my appointment and I got  a phone call from the oncologist’s receptionist to say that my referral had been received and could I come in tomorrow afternoon for an appointment.  I said “yes”, got the details, hung up and felt incredibly shaky and ill.  If I hadn’t heard from them, I’d be anxious, but I couldn’t believe the anxiety that knowing I was going the next day made me feel – and it just kept getting worse over the next 24 hours.  I think that you take one leap, struggle to get over that hurdle and it becomes the new normal, and even when you know there’s going to be more to come, that next step still feels shocking and insurmountable.  So, feeling fragile and teary, with a thumping headache and in over 41oC heat, I went to my appointment yesterday.  The whole family came down as we couldn’t leave the kids at home on such a bad fire risk day.  Of course, after rushing there, we had to wait but to be fair, when I finally got in to see the doctor he spent ages with me and never made me feel as if he was pushing me out.

He went through all of the results and scans with me (and Dave who was being my support and other pair of ears), and talked me through the good and the bad of the cancer, and took down a lot of my history and the family history.  So, as it stands, he said that the cancer is gone.  However, as it had spread to the nodes there is a possibility that microscopic cancer cells have gone travelling.  I start 6 months of chemo on 5 February (Dave’s birthday – I feel guilty).  Prior to that I have to have some more blood tests and a cardio test.  I’ve been given the option of cold caps which I have accepted – if I can’t stand them or they don’t work, I can change my mind after the first couple of treatments but it would be nice not to lose my hair. (Although, it’s the eyebrows and eyelashes that bother me more – I’ll have to get better at applying the warpaint.)  Chemo, apparently, will give me approximately 5% better chance of long-term survival – Dave kicked in here with statistical questions about absolute or relative which I would not have thought to ask.  The oncologist, Tony Michele, said that he could plug my details into a predictive analysis test for long-term prognosis but it seems those tools are set up mainly for ductal carcinoma which is by far the more common, and that would skew the results significantly (the wrong way).

I won’t know if I will need radiation until I see the radiation oncologist and I have no idea when that is likely to be.  Regardless, if I have it, it won’t be until after the chemo – so not until at least August, I guess.  Then it will be hormone therapy.

My task now is to get and stay as fit and healthy as I can as that will help me to deal best with the effects of the chemo.

After seeing the specialist and then discussing the logistics with the breast care nurse, I felt like I was in overload.  I’ve been booked in to get my heart checked before the chemo begins as it can affect the heart muscle if it’s already weak.  I also need to decide whether to have a port implanted to deliver the treatment so they don’t have to attack the veins each time.

All this time (about 2 hours) the kids were sitting patiently in the waiting room.  The nurses must have felt sorry for them as they gave them ice-creams before we went back out into the blazing heat.  Further reward came in the shape of a visit to Officeworks to stock up on stationery for school – I just don’t get the excitement of stationery.

More than glad to go to bed last night and draw a line under yesterday.

 

(Click on entry title to comment)

I am still not sleeping particularly well and surviving on painkillers so I’m tending to crash by early afternoon.  I went to lay down today, forgot that I couldn’t turn on to my side and ended up in tears from the agony.  I hadn’t long gotten over that when the phone rang.  The call was from Dr Kollias (surgeon) regarding the biopsy results.  The first thing he said was that it was good news.  Hurray – it’s been a while since I’ve had any of that!  Apparently, it looks like he got all of the offending tissue – there were pre-cancerous cells in it although I don’t really know what that means.  I will find out more next week when I have my follow-up appointment.  Best news though, is that no more of the lymph nodes showed any involvement!  He’s now organising my referral to a medical oncologist (Calvary) and a radiation oncologist (RAH – according to him the equipment is “space age” – Dave queried me on that…1960s? funny boy).   I don’t know if that means chemo or not as I believe it usually comes before the radiotherapy.

Now I just have to work on being able to get my arm above my head without the accompanying agony!