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Just a quickie this time…

I’m getting pretty good at this radiation business.  I zip in to the City, find a parking spot at the RAH (you’d be amazed how many people drive around for ages looking for a park close to the lifts when there’s oodles of parks further away), find my way through the labyrinth that is the hospital to radiation oncology, do my thing and then out again.  So far, with most of my appointments (and I can now say that I’m more than one third of the way through), I have been finished around the time my appointment was due to begin.  It’s that quick.

I am starting to notice some of the side effects, and much earlier than I expected to.  My throat is a bit sore on the affected side – a bit like I’m swallowing past something, indigestion has gotten worse, and I am getting tired.  It’s a different type of tiredness than chemo (that was more like a jellyfish – no bones to hold me up); this is more like the extreme tiredness you get when you’re ill.  It just washes over me and I can’t fight it.   No evidence of burns yet, which is great.

I went to school/work yesterday for James’ subject selection interview and took the opportunity to visit and wish everyone a happy SSO Week (and if I didn’t see you, “Happy SSO Week”, enjoy the lunch today and thank you for the lovely gift and balloon that made it’s way to me earlier in the week!).  Everyone was commenting on how well I looked.  Well, I got home, served dinner, then went to bed before 7pm as I just could not stay awake any longer.  And this was after resting between radiation in the morning and heading out to school at 2pm.  I’m really looking forward to be back next term.  I just hope my energy levels have returned.

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After yesterday’s brain regurgitation, I thought I’d should put down a real update on how things are going.

I was spoiled for my birthday on Tuesday.  I had an appointment with the physio in the morning and had some time to kill so I went for a swim which was so good in that it stretched the affected arm out.  I got to the physio and lucked in with the best one (read that as the one with the fingers of steel who can make me cry but gets results).  Later in the day it was family stuff.  I said to the kids not to give me any chocolates for my birthday as chocolate still doesn’t taste great, so I got money to go paddleboarding when the weather’s better.  Can’t wait!  And it’s beneficial for the cording so all good.

I met my lovely friend, Katy, for lunch on Wednesday – thanks, Katy, for lunch and the beautiful pressie!

Yesterday was the first day for radiation.  I was okay about it up until getting ready to go and then the anxiety kicked in a bit.  I think I was more worried that they’d lose me in the hospital again, and I was waiting for an hour to see the nurse, but once I saw her it was a fairly quick process.  Luckily Dave came with me for the first one so that I didn’t have to worry about the logistical stuff as well, and it’s always good to have another pair of ears at an appointment.  I even managed to visit the wig library beforehand and changed my wig so a different look now.  I’m now covered down one side with plastic film.  If it works, it will minimise the skin burns.  I can’t quite get my head around the fact that I have to go back today, and of course, every weekday for 3 weeks.

I also had my review appointment with the oncologist yesterday afternoon.  He’s happy with the progression of most of the side effects and was not unduly concerned with any.  I’ve been given the script for the Aromatase Inhibitor and unfortunately, some of the side effects are quite likely to get worse, although others, I may not get.  He reckons it’ll take a few weeks to get myself sorted on them on top of the effects of radiation and chemo but the sooner I start, the better.  He wants me to have time to adjust and learn to cope with the symptoms and possibly introduce other medication to deal with things if I can’t manage.  I guess that I’d better learn to deal with it as this is for the next 5 years in the first instance!

So, very long day, yesterday.  And now, I’m off to get ready for the next one!

Ciao for now!

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This post is a hard one to write but the thoughts have been tangling up in my head so I need to get them out and sometimes I treat this blog as a diary and a release.   I know that I’ve been grim on this blog many times over the last few months but sometimes things get grim.  I’ll post something later that is more positive about this week when middle of the night thoughts are not swirling around in my mind.   Feel free to not read on…

I’ve had two themes running around in my head and they’ve both come to the fore with a vengeance this week.  I’m not sure I’m going to make sense with this or that I’m going to be able to get it down in one shot but I’m going to give it a go.

I turned 55 on Tuesday.  Funny time of life – too young to be old and too old to be young.  Don’t get me wrong by what I’m going to say – I’m truly grateful to have reached this age because so many people I know, haven’t.  It has made me think a lot about my mortality, though.  On my 54th birthday, I didn’t have any reason in particular to think that I wouldn’t have another 30, 35, 40 years.  I know that death can come at any time, out of the blue, but I felt well and didn’t have any reason to suspect that things were going wrong for me.  Having breast cancer is staring down the gun.  All of a sudden, the idea of death is blatant and the reality is, I don’t know how long I’m likely to have.   My sister, Lori, got the 5-year all clear, only to lose the fight at 13 years post-diagnosis.  After I had the surgery, my surgeon said that I can consider myself cancer-free and that I should be around for many years but I know that this is not certain.  I’m throwing everything I can at this , and as far as my day-to-day health goes, this year is a write-off.  I can only hope that it has been worth the debilitating effects.  But the alternative was never a consideration.

The other thing I want to get down is about getting on with life.  This weekend in Melbourne, along with the Field of Women event at the footy, there is going to be a conference called Plan B (Plan A being life before a breast cancer diagnosis).  While I would have liked to be there, it is not possible, so I will tune in via a webcast.  But one of the sessions is about “finding a new normal”.  I hear a lot about this new normal so I will be interested to hear what is said.  Personally, I can’t imagine anything being normal again.  Every moment, every action, is tainted by the cancer diagnosis – either the disease itself and wondering if/when it’s going to return, or by the treatment and the impact it has on everyday life.  How can there be a normal in that?   I recently read a piece about living post-breast-cancer that I will tack on the end of this because it resonates so loudly.

With these thoughts in my head, I struggle to envisage the future.  I’m hoping that the surgeon is right.  I try to be optimistic about things.  But I know that the reality is that things are uncertain and, while the impression is out there that breast cancer is curable, the actual term that tends to be used is NED – no evidence of disease.  That, of course, has another side and that is that the disease has returned.  And that is living with the sword over your head.

Crippled

I walk around and I carry a big, huge, scary secret inside me.

I feel crippled daily.
I feel crippled by fear, by worry, by anxiety, and by death.

You can’t see it.
I look healthy, albeit tired.
People think I’m doing well.
My cancer, diagnosed, treated and gone, 6 years ago now, is a thing of the past for so many.
But for me? It is ever present.

As I fold laundry, I wonder if the cancer is back.
As I vacuum the living room, I wonder if another friend will receive bad news.
As I read books to my children that contain sad scenes, I cry more than I should, because I’m crying not just for the character in my book, but for my child who has to also bear some of the burden of cancer.

It is ever present.

Every time a doctor sends me for a test, just in case, I can’t sleep.
Every time they need a new scan, I become a ball of worry.
Every time they give me a clean bill of health, I worry they’ve missed something.

Good news.
Bad news.
It’s all fraught with something for me to fret over.

There is an omnipresent weight upon my chest.
At times it feels as if it physically there.
I gasp for air.
I can’t breathe.
I gasp for more air.
Deep breaths, my brain tells my lungs.
Deep breaths.
We can breathe.
There is not actual weight there.
I can breathe just fine.

I know this, in my brain, to be true.

But my heart? My heart is screaming.
Nope, I can’t breathe.
I’m scared.
I’m terrified.
I’m grieving.
I’ve lost another friend.
Another friend’s cancer has spread.
The doctor wants me to get another test.
I’ve got a check-up coming up.
There’s a new lump on my body.
I am not fine.
I am not okay.
I. Can. Not. Breathe.

And frankly brain? You and your facts can go take a long hike.

This dichotomy of my brain and my heart.
This craziness of being both fine and not fine.
This roller coaster of being positive the cancer is back and knowing it is not.
This life of making new great friendships and grieving friends who have passed on.

It takes a toll.
I feel crippled.
It seems too much to deal with it. Too much to face.

And yet, slowly – painfully slowly – I try to face it.
I write. I talk. I take walks. I meditate. I give myself pep talks. I celebrate the small accomplishments.

This is the life after cancer I wasn’t prepared for.
This is the life after cancer they never show in the movies.
This is the life after cancer the fiction books never get around too.
This is the life after cancer that I face.

Every single day.
It’s relentless.
Like the waves on the beach.
It’s always there.

Some days, thankfully, it’s small waves. It’s beautiful waves. The kind you stare it in amazement.
Some days, it’s stormy waves. It’s high waves. Advisories are issued. Stay away from the beach. The waves are dangerous today. They are strong. They are a force to be reckoned with.

And yet, time it marches on.
And I must march on it with it.
Sometimes slowly.
Sometimes unwillingly.

But I march.
This is life.
This is my life.
I try to embrace it.
I’m doing the best I can.
And that is enough.
I will tell myself that is enough.
Over and over and over.
Until I believe it.

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It’s early Monday morning and I can hear outside that we’re finally getting some rain.  It’s going to be an interesting drive to school today.  And this is my last day of being 54 as tomorrow is my birthday.  My last birthday seems much longer than a year ago – it’s in the very distant past.  This year has gone so slowly.  You would think, at my age that was a good thing but not so.  Everyone keeps saying that I’m looking good (that seems to be an effect of the chemo, believe it or not – and lot’s of makeup), but I look in the mirror and I feel like I’ve aged 10 years in 8 months.  Maybe when things settle down and my eyebrows grow back, I’ll feel a bit better about the way I look.

It’s now been 2 1/2 weeks since my last chemo.  I knew the side effects wouldn’t disappear straight away but I had hoped that I would be feeling better than I am.   My gut is still completely off-line (too much info?),  fatigue is debilitating, headaches are bad, and I have an interesting new one – oedema; which has caused me to develop a lovely set of luggage under my eyes!  I’ve never had bags under my eyes – circles, yes – bags, no.  Funnily enough, the side effect that worried me the most, the peripheral neuropathy, seems to be getting better the quickest.  It ramped up for about a week after the last chemo and now is slowly dissipating.  Oh! and I forgot the cording!  How could I forget the cording?  It flared badly after my last chemo and is projecting pain from my underarm through to my wrist – what joy.  I’m seeing the physio for therapy  as I’ve got to get the movement back in it; firstly so I don’t trigger lymphoedema and secondly, because radiotherapy is going to make things tighter.  This is the most expensive treatment I’ve had to have so far.  As I understand it, it’s because lymphoedema treatment does not have an item number under Medicare.  This is one of the hidden after-costs of breast cancer and effects many women.  Actually, it’s one of the hidden costs of any cancer surgery where lymph nodes are removed and it is incredibly debilitating if it sets in.  I mention this because it’s one of the current drives for recognition by the Breast Cancer Network.

I’m still going to my exercise classes and they tell me that their assessment says I’m getting stronger which is good news.  I’m not sure I will be able to go back after this week though because my radiation appointments are likely to clash.  I also went swimming last week at the ARC – slowest 250m I’ve ever done but I felt pretty good about myself afterwards.  And I managed a 5km walk on Saturday morning and a 3k  walk on Sunday morning (that’s my sunrise photo at the top – not the best one but the others were too big to publish).  So, I’m gradually getting my strength back which is good on three levels – just to be fitter again, to reduce the chances of recurrence, and to reduce the likelihood of lymphoedema from doing too much with that arm.  Mind you, this is all done in the morning and then I collapse, completely exhausted, for the rest of the day.  But I do that anyway without the exercise so, no loss.

My poor Francesca has been home from school since last Wednesday with a really bad cold.  I feel so sorry for her and it’s been so hard to keep my distance a bit – all I want to do is hug her close when she’s feeling so poorly.  I hope that my immune system is getting stronger but one of her symptoms is an uncontrollable cough which I just can’t afford to get when I’m going to have to be lying perfectly still.

Radiation starts on Thursday so that will be a new experience for me.  I’ll be having that for 15 days at the RAH  (hopefully they won’t lose me this time),  and hopefully, given that it’s only 15 days, I won’t burn too badly.  And on Thursday I’ll also be seeing my oncologist to review things and to find out what my next step is going to be on this never-ending rollercoaster (dis)assembly line that is breast cancer treatment.

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So, it’s 3:30am on the morning of my last chemo treatment.  I never sleep particularly well and worse each time on the chemo days.  Lucky that it’s the last treatment or I’d be getting up before I went to bed!  I’m really not looking forward to it.  Don’t get me wrong – I don’t want to stop before the end of treatment as I want to know I’ve done the best I can, but it’s worn me down terribly.  Who knew that 6 months could be so long.   I don’t really recover at all now before the each one and I know that it will take every bit of the next 3 weeks to get some energy back.  And it would be so nice to actually taste food again.  I really only taste sweet, salty, bitter and cardboard, now.  No actual flavour.

Yesterday I got the results back from the gene test.  The geneticist said that there’s nothing currently identifiable but that I’ll be put on the review list in case of discoveries.  That’s good news for the kids as it means that it’s unlikely that I have passed anything on to them and if I have, it’s nothing major.  I also had an ECG to monitor how chemo has affected my heart but I don’t know the results of that, yet.

I realise that my posts have been very doom and gloom over the last 6 months.  I wouldn’t blame you for turning off, dear friend – I would too, if I could!  I’m hoping that as the effects of chemo dissipate (and the end of winter comes), I will start to head towards a more positive me, again.  And maybe I might get some eyebrows back…

I’m looking forward to Sunday as I will be catching up with friends for our annual Christmas in July.  I just hope that I can stay awake and with it for the duration!  I must remember not to stand too close to the barbecue if I wear a wig – melting hair is not a good look.

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Back in the early days of treatment – in fact, while I was in hospital after the second surgery – I came across this piece written by a cancer survivor.  I found it very powerful then.  Months later, after two surgeries, almost at the completion of 6 months of chemo and heading towards radiation, I find it speaks even louder.  I thought I’d post it here for two reasons… The first is to give others an idea of what this experience is like.  The second, to remind myself why I’m so exhausted and what I’ve been (and am going) through.

Cancer: the mountain lion in your fridge by Caitlin Feeley

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One of the things that recent events has allowed, and even screamed for, is introspection.

Going on what I’ve observed, it seems that around the six month mark after diagnosis, thoughts and emotions get low, and I’m no exception to this.   I will admit, this is not how I thought the breast cancer treatment would go – how naive was I?  While I knew that chemo was going to be a long and unpleasant experience, I never knew just how long 6 months could drag and at the beginning, I wasn’t slated for chemo, anyway.  When I  got through surgery with my headspace mostly intact (I was definitely wearing my Yellow Hat, at least) I thought I was going to manage this experience reasonably well, emotionally.  It was going to be a few months out of my life and then back to mostly normal.  I knew that I would always be really worried about future recurrence (and losing my sister to this disease did not inspire confidence) but I did not know how far down breast cancer was going to drag me.  I am a planner, a bit of a dreamer, researcher, and generally a positive person.  In fact, I find it really hard when, to go back to de Bono, I have an abundance of Black Hats around me.  While I’m no Pollyanna by any stretch of the imagination, positivity has always gotten me through life, even through some of the darkest times when it’s only been a glimmer in the distance.  I’ve always taken the view that when one door closes, you’ve just got to look for the one that’s about to open somewhere.  I’ve found now, that my positivity has mostly deserted me –  the doors are all locked and the windows painted shut.  Earlier in the year, I posted that I don’t know who I am or who I’m going to be after this.  I still feel that way – is this all it’s ever going to be now?

We recently went to the shack for a few days.  I was longing for a change of scenery and that’s the cheapest and easiest – even the cat can come.  I was overjoyed to be able to do a 4km walk along the beach.  Although I wore thongs to protect the soles of my feet (wasn’t sure that shell cuts would be a good idea at this stage of treatment), the cold at sunrise did not seem to affect the neuropathy.  I haven’t been able to walk any significant distance since the last AC treatment 3 months ago so this was a really big thing.  And, as often happens when I’m walking by myself, my thoughts turned inward.

A few days ago, I completed a SAHMRI survey on emotional and physical well-being after a breast cancer diagnosis.  I’m more than happy to help advance knowledge but the slant of the questions made me think.  It seems a lot of the concern is over how women view their bodies after treatment – “am I still a woman?”.  This aspect of body image isn’t one that disturbs me.  “Are you able to look at yourself in a mirror?”  Yes, I can.  But I can’t see me…and that is what the survey questions didn’t reach.  I look at my body dispassionately.  It’s a long time since I thought that my body was gorgeous (if I ever did) but I’ve always lived quite comfortably in my skin, whatever it’s faults.  Since treatment, my body just seems like a collection of parts that have little to do with me.  Even while I’m struggling with the realities of the chemo side effects and trying to regain strength and movement, I feel completely disassociated with it.  It doesn’t help when there’s parts of it that have no feeling left or scrambled nerves.  (When the nodes are removed, a major nerve is damaged which leads to a whole area around the underarm, upper arm and chest being compromised with regard to sensation.)  I know that seeing the world as if through glass is a major flag for depression – I assume that seeing yourself that way is a bit similar.  And yes, I acknowledge that I am depressed.

I was thrilled to be able to walk at the beach and get out on the kayak, and it was very therapeutic, mentally as well as physically, but it does open the door to emotional analysis.

I’m getting close to the end of chemotherapy now.  Today is scheduled for treatment No. 11 and then next Thursday should be the last.  However, I’m anxious that, due to the peripheral neuropathy in my feet, the doctor may pull the pin on one or both.  I so want this to be over as I’ve really had enough and I’m just dragging myself through the days, but I don’t want to have come this far and feel that I haven’t done as much as possible to defeat this disease.  In the end, I will do what I am told.  Possible permanent nerve damage takes the decision-making out of it.

So, now I’m close to the end of allowing myself to be poisoned and then, in a few weeks, I will present myself to the hospital to be irradiated.  I wonder (and hope) that in some future time, people will look back at this common treatment regimen and shake their heads in disbelief at the barbarity of it.

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Okay, so got my first tatts, yesterday…  Well, actually three tiny dots that are supposed to look like freckles.  They may be small but the story of getting them is, of course, not.

I knew that the day was going to be a long one.  I had an appointment at the Royal Adelaide to see the radiation oncologist at 11:10am – an awkward time that probably meant staying down in town to pick up the kids, and that was going to be a late one anyway as James wasn’t going to finish exams until 4:30pm.  My only thought was whether I was going to cope physically with such a long day.  But, feeling confident and on top of things.  Oh, how the mighty fall…

I got to the hospital in perfect time and almost sailed into a parking space.  I worked out how to do the check-in at the kiosk and found the right reception desk on Level 3 with ease.  I saw that the number on my ticket coincided with a number on the automatic display so I relaxed and chatted with another woman while I waited for further instructions.  After awhile my number turned green with a “go now” message.  I thought I knew where to go from my previous appointment in February but I checked with the receptionist to confirm it and she directed me to the nurse’s station around the corner.  There, I was weighed and ticked off electronically and sent to another waiting room and she told me there was no need to check in there.

Well, I waited and waited, and saw people come and go.  I went up to the desk and asked if I should have checked in with them but was told “no” and that all was good.  Then I waited and waited – and by this time it was past 1pm and more people and come and gone, and staff were taking lunch breaks, and I had seen no sign of my doctor at all.  So, I went back up to the desk and asked how long he was going to be.  Panic stations – he’s not there this week and supposedly there’s no patients booked for his morning clinic!  The receptionist started madly trying to contact someone and after some some running around and phone calls, eventually another woman turned up.  She told me that the doctor who was relieving him was seeing people on Level 2, directly below and if I go down there immediately, I might still catch her.

By this time, my confidence was in tatters, my anxiety levels had peaked and any resilience I had had deserted me.  So, trying hard not to cry but barely succeeding, and wandering around in an increasing state of panic, I went looking for the right lift through tear-blurred eyes.  Straight forward you would think.  The new RAH may be beautiful but straight forward it isn’t.  After walking in circles, I found the lift and the receptionist on Level 2, then promptly burst into tears – couldn’t even get my words out.  She was lovely and found a nurse to take me through once I’d calmed enough to tell her who I was.  The nurse took me through to a consulting room and said that they had been looking for me for hours.  (I’m still not really sure why I was so hard to find as it was obvious that I was in the hospital from the electronic check-in and I did have my phone with me.)  The positive news was that she said that the stuff-up was completely unacceptable and that she was going to report it, so at least someone else may be spared this.  Anyway, the doctor was long gone on her rounds but the nurse tracked her down and after another wait, I finally got the appointment that I was there for – nearly 2pm by now.  Another surprise was that I was supposed to be there for a CT scan and that had been booked for 12:30pm but, of course, I had been up on Level 3 at that time.  Fortunately, they were able to reschedule me for 3pm – I don’t think I could have borne to be told to come back on another day.

An interview with another nurse to go through my particulars and make sure that all the details were correct and then it was time to don the flappy gown and go in for the scan (3:15pm, by now).  Lot’s of careful positioning, texta marks, plastic templates, scan and finally!  3 tiny tattoos for souvenirs!  It’s so they get the same position each time.  Oh, and still tears on and off – way too hard to wind down after all of that – and knowing that I had to try to relax to keep the positioning correct during the scan.

Now, I’m not usually a teary person but it’s demonstrated to me just how low this has brought me emotionally, that something like this can be my complete undoing.  I have no emotional reserves left to draw on.

By the time I got out of the hospital, I just had time to pick Elena up from my mother-in-law’s (so glad she is able to wait there after school) and then get to Glenunga to pick up the other two.  A dash in to get Elena (I’m sorry, Jenny, that I didn’t stop for explanations – no time and I would have probably burst into tears again if I did) then, mercifully, little traffic on the way to the high school.  I got there just in time for Francesca to leave the Hub as it closed and to pick James up from his exam.  I was so glad to be able to hand the wheel over to him on the trip home.

As I said…a very long story for some small tattoos.  I start radiation (if all goes to plan with the remaining chemo treatments) on the 9th of August – 2 days after my 55th birthday – 15 doses/3 weeks, in all.  They must have felt very sorry for me as I’ve been given the perfect appointment slot- a comfortable amount of time after school drop-off.  If I make it to the end, I have 3 more chemo treatments and, as the neuropathy seems to have settled a bit this week, I’m hopeful of getting there and also hopeful that all goes smoothly, now.  No more drama llama.

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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…