3/4's through journey - getting very travel weary!!!

Well, haven't I been slack!!  I've been getting all these queries from people about my blog:

• Are you OK, Kay?
• Where are you at?
• How have you been?

And, me being very travel weary at this stage of my journey, have been ignoring your queries!!!! 

I've actually started this blog about 4 weeks ago, so will now update it and finish it!!!

So, where am I at!!!

I've had my surgery (lumpectomy and axillary clearance - 15 lymph nodes removed).  The surgery itself went pretty well without a hitch.  Apart from a slight hiccup in the morning (going up to the operating theatre twice -first time in error, second time to have the operation).  I was in hospital overnight and was walking shakily to the loo about 2 hours after waking up.  I won't tell you the gory bits - but basically, I have two scars - the one on the breast is very minimal and the one under my arm is about 7 cm.  6 weeks after surgery, I'm having no problems except I have some numbness under my arm and my arm aches at the end of each day.

The results of surgery:

• At time of diagnosis - 4 cm Grade 3 cancer (aggressive) + cancer in lymph gland
• At time of surgery - 1 cm area of Grade 1 cells (no mass) and no cancer in lymph glands.  The tumour had responded so well to the chemotherapy which was the best outcome that could be expected.

Now - Cancer Free!!!!!!  Barbarelle the Breast Bitch Bump is dead!!!!

Yeeahaa, yahooo, bloody ripper!!!  You will say!!!  And, yes, I should say as well!!  I thought once I was told that I was cancer free, I'd be shouting from the hills - however, I'm not feeling very yeehaa, yahhoo, bloody ripper as yet!

Couple of reasons:

I think I've been on this journey for so long, I can't quite reconcile that I'm now cancer free.  To be honest, I still feel that there is something wrong and can't quite accept that its gone.  Don't really trust that all of the cells are dead. 

+ I'm stilll going through treatment - radiotherapy every day (except weekends) for 6 weeks.  I've had 5 so far so am counting down, 25, 24, 23 etc etc etc etc......

+ I'm on a nasty pill called Tamoxifen which marches the body into menopause (quickly). The side effects are, that I can self-combust every hour or so with hot flushes, I have bone aches and my left thumb has frozen (you don't know how often you use your left thumb until you can't) + I'm now a grumpy old lady with mood swings (don't take right of way off me or watch it!!!

+ I'm still feeling like crap!!!  Body feels like I'm 80 (sorry, slight exaggeration - 79).

So, I've been feeling very down of late and have been enjoying a brief stay (keeping with journey theme) at Kay's Self Pity Lodge.  Its a pretty comfy lodge but I'm concerned that I might stay there too long!!!

On a positive note (don't worry - I still have my sense of humour and am not down 100% of the time)

I had my sister Kris stay over the surgery time and it was lovely to be looked after and coddled a bit!!  I must admit, I miss having some extra attention at the moment!

I now am getting my hair back (see photo) and now have eyebrows and very short eye-lashes!  On a negative note, I noticed on the weekend after looking into a magnifying mirror with glasses on, that I had a fine fuzz of baby fluff on my face and looked a bit like Father Christmas.  So, got the scissors out + also plucked my eyebrows for the first time in 6 months.

Also, on Monday I decided to go scarf/wig/hat free.  Hot flushes and head coverings don't mix!  Feel much cooler without anything.  Plus everyone tells me I have a fabulous head!!

I'm back at work - and enjoying being back in the midst of things - although I must admit, working full time is getting a bit tough!  One doctor told me that I had to remain calm to minimise the hot flushes!!  Well, you try being a CEO of an organisation and then drive into the city every day, find a pack, wrestle with traffic and then get zapped by radiotherapy!!  And you try and remain calm!!!  Bloody hec!!! (here comes a self combustion episode!).

So, although back at work - I'm still taking it a bit easy.  Im now finishing this off at work in between reading a 50 page report!

I can also start gardening etc and enjoyed planting some tomatoes last week.  Perth is starting to have some nice spring weather (fingers crossed) so will start enjoying getting out and about a bit more.  Its been a pretty miserable winter.

So, as I said, sorry about delay in blog entries.  To be honest, its been very pleasing that you are all enjoying reading them so much.  Many of you have commented on my writing skills (you never know - a new career!!).  For my family, they already know this - but my hero as a child was Ita Buttrose.  I always wanted to be a journalist!

So, that's it for the time being.  I will try and send one more blog to let you know when I've reached my final destination  - Health and definitely cancer free!!!

Love Kay

First stage of my journey IS OVER

Yippee, Yahoo, Hooray, Woo Hoo, Bloody Ripper, Bonza, X$##& Fantastic!!!

6 down NONE TO GO

As you may be able to sense, I’m a little bit excited that I’ve just finished my last chemotherapy session yesterday!!  Just a little bit pleased, actually, I feel like I should burst into a song and a tap

dance (but I don’t have the energy). 

Now all I have to do is put up with the next week of feeling yuk and then enjoy gradually feeling back to normal.

I’m going to try and plan a little celebration this time in three weeks because for the last six X three weeks, it’s been something I’ve dreaded.  Waking up, knowing that you have to go and get poisoned isn’t very pleasant, and then you walk into the hospital and get even more depressed.  Then you get hooked up and have all these yucky feelings in your body. 

However, looking on the bright side – the lump has shrunk, the chemotherapy did exactly what it was suppose to do.  Compared to other people, I cruised through.  Nearly everyone I talked to, or eavesdropped (you do a lot of that whilst being poisoned) has had nothing significant happen to them. 

Lady next to me yesterday, had severe mouth ulcers and couldn’t eat.  Another lady couldn’t wear her dentures because of ulcers.  Someone else got incredible reflux and found it difficult to eat.  Another lady got an infection (didn’t say where) and as really sick.  A few blogs I read, people ended up in hospital with pneumonia    So, I was really lucky.

You can’t really complain (but I still will) of

·         having a somewhat yucky stomach for at the first week (cross between slight sea-sickness and morning sickness  - or so I’ve been told)

·         bowel issues (don’t worry I won’t elaborate, except shopping centre toilets are not the place to have them,

·         no energy – can’t believe how my fitness levels have dropped – and considering that I didn’t have a high level of fitness, you can imagine how low it is.  I now am a fan of park benches, seats outside coles. 

·         no hair (oh how I’d love to have my hair back – my hair envy dreams are increasing – the other night, I had a lousy hair colouring episode, but at least my hair was long.  (Actually, Kris – it was your fault, you were dying my hair and you didn’t do a great job)

·         drippy right nostril , weepy right eye (don’t know why just my right side is drippy and weepy).  Apparently my drippy nostril is because of a lack of nasal hairs and my weepy right eye may be over compensating because it things that it’s a ‘dry eye’.

·         + to top it all off, enforced menopause, which has meant hot flushes, sleepless nights and a little bit of depression.

Really, in the bigger picture of things, it wasn’t too bad……..

However, as you can see by the next two photos, my veins were starting to rebel with needles.  I had a student phlebotomist taking blood and she needed three attempts and then a call from a more experienced person.  So, result – two pricks in one arm before a successful attempt in the other arm (which resulted in a bruise)



Left Arm - two pricks + chemo bruise




Right Arm  - successful vein, blood tests



And then, for the drip for the chemo – also a fair bit of bruising.  So, my veins will be pleased for a bit of a break.

So, where too from here:

No action for the next few weeks.  Until I have a surgeons appointment 12 July.  Then, they’ll tell me the surgery plan (dates, what, how etc) – expected to be late July, early August.  They usually wait a month or so from chemo so that my immune system and general health can improve. 

Being able to garden!!!  I am so looking forward to being able to plant some seedlings in about 6 weeks.  Oh for the smell of soil!! 

Back at work on a part time basis from 29^th June (my birthday present)!  Actually I’m really looking forward to it.  I hope my team is as well!!  I’d say there’ll be a fair bit of adjusting for all, they are used to me not being there!!

But, there’ll be a transition phase…….I’m going to take it fairly easily for the first few weeks because I think it will be a bit of a shock going from doing nothing back to doing something.  Also, I’m not sure how long this energy depletion will last.  The oncologist said probably another 5 – 6 weeks at least.  I also don’t want any stress to build up which impedes anything. 

I’ll then have to take some more time off for the surgery and then about one month after 6 weeks of radiotherapy.  Apparently I can combine this with work – it only takes about 30 minutes per session, so apart from travel, parking etc, might only be over an hour each day.

So, not much really to say apart from:

 

(Apologies for side view - wouldn't flip for some reason)



NO MORE BLOODY CHEMO

IST STAGE OF MY JOURNEY IS OVER, AND NOW FOR THE NEXT STAGE……

Thanks to all my readers, and thanks to all who’ve been thinking about me, supporting me and generally wishing me well…. So far, it’s worked!!

Images from Chemo ward

Firstly, fabulous news.

The oncologist couldn't find the lump!!!!!! So Barbarella the breast bump bitch has shrunk to oblivion (I loved that word when I was a teenager, very dramatic). He said it was a fabulous result and very promising for surgery. Less invasive. Still have to have all the lymph glands removed but he explained a bit better so I feel less uneasy about it.

Im in the chemo ward, hooked up with all the chemicals dripping. Here are some photos so that you can see what its like. I didn't take any photos of people because I thought that was a bit invasive.

Sitting listening to meditation music (currently pan flutes) having a very hot flush, and feeling the chemicals going through. Drinking soda water to try and calm the tummy down. I can't explain the chemo rush except you have a cold chemical feel in your brain???

About 15 people having chemo. More women than men. A mixture of people. An older lady with a brown beanie. Her grandson (nice looking electrical instrumentation guy) is keeping her company. She's not reading or anything. She's just looking around and when one of the nurses asks her how she is, she replies "im fine lovey"

Lady next to me, comes down from York each chem session (1.5 to 2 hours drive). I can't imagine having to put up with bumps and corners after chemo.

There was a guy here before that had the same birthday as me. The nurse recognised it because hers is just before mine. She's my favorite nurse. She gave me my first chemo and has a fabulous bedside manner. No surprisingly, she's a queenslander and a cancerian!

Also next to me is a Japanese couple. She's very young and looks about 5 months pregnant. Can't imagine what it would be like being pregnant and having cancer. It really makes me feel like I have so much less to complain about.

In fact, when you think about this place is all very humbling and makes you think about complaining less, and one of my favorites sayings is already DON'T SWEAT THE SMALL STUFF. I think that will be my new mantra because so many people get stressed about alot of very unimportant stuff.

What else....
Here's some personal stuff. So if you don't want to here about Kay's biological functions then skip next paragraph or two.
I'm menopausal!!! Why do they call it MENopausal. And for that matter MENstruating. I think some man doctor named them thinking they were gifts to women. One you are a woman and fertile and well, the other barren and old!!!
so, just when I was feeling like I was ready to have a child (only joking) I now am barren and sterile. But will save a fortune on sanitary products (again) is the name of the product saying that we are unsanitary???

Apparently I will have most of the symptoms whilst going thru treatment. Its also the best for the tumor because it's estrogen receptive so they don't warn any of that around.

Hot flushes.....

Mmmm. Not sure if I'm getting hot or cold flushes or even if you can get cold flushes. Basically, all this sweat comes out and then I feel cold. Because I'm bald, once the sweat arrives, feel like someone's put a bag of cold peas on my scalp.

So all night I alternate between my woollen sleep cap (yes, very much out off "little house on the prairie) and being bald. Its interesting (and I'm sure the readers will be as well) that the only place I don't sweat is under the arms. So, my theory is.....

The tale of Barberella and how she influenced my sweat glands

My lymph glands who have been bombarded with chemicals, are talking to my under arm sweat glands.

Sweat glands, sensing hot flush coming up, prepares to react, takes a deep breath and gets ready to squirt out the sweat. The lymph glands look on anxiously and exclaims "don't, keep absolutely quiet!" The sweat glands look quizzically and their team leader asks "why"?
"Well" number 1 lymph gland replies "Its like this. We have spent the last few years sitting around, doing just what was expected from us and basically having an easy time. And then, this bitch called Barberella came to us and said "Boy, have I got a deal for you. I can show you a way to get bigger and fatter and basically have a whale of a time. I'm just about to invade Kay's breast and with you on board we can conquer and take over the whole body"

He (I can't think of a having a female lymph gland) continued " well, it all sounded cosher. All we had to do was take on a few cancer cells, pass it down the line and then let nature takes its course. We were doing it well, very covertly so not to attract attention. But Barberella got too big for her boots and tried to grow too quickly. Kay obviously noticed and raced straight to Breastscreen".

Anyway to cut a long sorry story short. We were having a pretty cushy life and then all of these nasty chemicals have attacked us. Most of us have suffered pretty lethal wounds a few of us are just surviving but I don't think it'll be long... Anyway, there going to cut us all out so there'll be nothing left"

"so, my advice to you, is keep your heads down, don't squirt out that sweat. Otherwise you'll also be a casualty of barberella's megalomanic campaign"

Apparently, the sweat glands were scared shittless and made an overwhelming vote to remain sweat less for the next couple of months.

So, now you know how my brain works. For my family, they all know that I can be a bit strange, but for co-workers and newer friends, you'll be getting to know me a bit more. Don't worry - I'm still sane!

What next
Well, I've just had the 5 of 6 chemo - all going very well. It's day two (didn't obviously finish this whilst having chemo)and still have all of the anti-nausea stuff in my system so not feeling too bad. The next 3 days are my worse and basically I run out of energy and feel like crap. So that's what's next for me...

It helps me by thinking that all of these chemicals are storming all of the cancer cells in my body and I often picture a small "Luke Skywalker" - the good chemical going through all of my veins saying " I have the force"!! And he's blasting all of the bad guys.. It helps.

So, that's it for now. Hope you enjoyed the update.

Love Kay

+ Luke Skywalker and a very sad, depleted Barbarella the breast bump bitch!!!!

Mid Journey Reflections

Well, its been a few weeks since my last blog and because I haven’t really done anything that exciting, I thought I’d take the opportunity to have some self-reflections!  Oh no, you say – “Kay self reflecting’, that’s going to be a bit painful”

However to put your mind at rest, I’m going to balance it with:

Some pretty serious reflections

Some not so serious reflections

And some pretty stupid reflections……..

So, here goes.

Some pretty serious reflections

·         Cancer’s pretty serious shit (well, that’s my opinion to date!).  Its funny when you have cancer and you talk to other people with cancer, you get lots of different interpretations of what it’s like to have cancer….

One lady – Basically, whilst receiving chemo, wanted life to be totally normal, so lived entirely as if nothing had changed.  Didn’t change her routine much.  Didn’t really tell many people that she was sick.

Another lady – got a real shock, immediately changed her life, went and moved in with her daughter and looked at her daughter for much of her decision making.

Another great lady (me) – took it very seriously.  Sometimes she felt that it was ruling her life (but then thought that it was so important that it probably should) She found it difficult thinking of much else, and wanted to know more and understand what was happening to her body.  Basically, she reacted to this issue, like she reacts to other issues – she wanted to take control (she’s a bit of a control freak). 

I sometimes wonder whether I’ve approached this the right way – whether I should have tried to live ‘a normal life’ or whether I’ve gone too much the other way, and become a little too focused on the disease.  I suppose it reflects me – I’m never ‘a middle of the road’ person. I’m either one or the other.

·         Family DNA is really strong…..

As you all know, I’ve had visits by two siblings – my older sister Kris, then my older brother Greg.  Its funny, that I’ve probably spent less time with both of them over the past ten years, than most of my friends etc, but, as soon as they walked in the door, I immediately felt loved, more secure and totally at ease.  There were no feelings of ‘strangeness’ – it just felt right!! It goes to show, that whatever happened when you were a child really sticks with you.  The family ties are really strong….

The BEST experience of this has been the opportunity to have 1 on 1 time with each of them.  How often do you actually spend 1 on 1 time with siblings, with no other relatives around? 

Real quality time at a time when I needed real quality time!  Although I couldn’t get Kris to clean out all my cupboards, and I had to watch lots of ABC and Rugby league with Greg, I thought I’d tell you…..

I have the best family (brother, sisters, nieces and nephews) and they are all really great people (just like me!!)  As I said, family DNA is really strong.

Slightly less serious reflections

·         Wow, your body is pretty resilient.  To think that you get bombarded with toxic waste every three weeks, and then your body can recover from that, really reiterates how special, all the cells, protons, and other icky bits are – the body really is a complex machine that we should look after.  I now wish that I was a bit more gentle on my body over the past 50 years.  After all of this is over, I hope that I remember how special my body is.  I’m not going to go overboard – but I’m going to try and look after it a bit more.  Healthier food, more activity and a really good work/life balance.    

·         A hot water bottle, wheat-pack or electric blanket cannot compete with the warmth and snuggleness of my cat Sonny.  My heart sometimes skips a beat when, after 5 minutes of me lying down, he jumps up on the bed, does his twirly-whirly position thing and then lies down in the crook of my side, so close, he then stretches his paw so that it curls over my hip, and then goes to sleep.  Immediately I feel warm and also very special  I love my cat to bits and he loves me!!

·         I keep telling everyone that I’m a pretty nice person, but I’m now noticing, that most people agree with me…..that I am a pretty nice person!!  From a work point of view, having people’s respect and admiration has always been important for me.  I know it sounds a bit big-headed but that’s the way I am…. Anyway, I’ve felt pretty ‘shuffed’ that so many work colleagues have passed on best wishes, or asked after me etc.  I’ve been ‘missed’ and I like that.  Now all I have to do, is when I get back to work, live up to my fantastic reputation!!  Shouldn’t be that difficult – I know how good I am!!

Pretty stupid reflections

·         Why do they sell so much ‘Funeral Insurance” on daytime TV? Do they think - people are at home watching TV and they’ll see the ad, and then think….Oh, I must get funeral insurance now…..Do daytime television producers, schedulers think that everyone watching have an IQ of 85?  I can’t believe the amount of crap on morning TV. Now don’t get me talking about the “Aaah Bra”.  I think they should call it ‘the Fuck Off Aaah Bra!”

·         Best advise I can give you….Don’t eat nuts or grainy bread, the day before diarrhea starts….(I don’t think I have to elaborate)

·         Hair-brushing is instinctive.  I feel like I haven’t completed my ‘toilette’ without brushing my hair.  My hair brush was on the sink the other day and I instinctively picked it up to brush my hair.  I’m also starting to have dreams with hair – and my hair is always blowing in the wind….  I think I have a bad case of hair-envy….

·         I think I must be sick……I didn’t think that toes could feel so cold.  When I was a kid, Mum could never get me to wear socks to bed or wear shoes when it was cold.  My feet were always really warm and I’d kick the socks off during the night.  Well, not now, at the moment, I feel like I have no blood in my toes and even with slippers on, they are freezing.  I’ve been trying to coax Sonny into sleeping on my feet but he won’t be in it.  Probably not very comfortable.

• Tomato skin is difficult to digest. 

Well, that's it - I've 'self reflected' and do I feel good!!  Actually, because I have so much time on my hands, I'm doing quite a  lot of self-reflection and its  not that bad a thing do do.   I can recommend it.

Back to Business

For those of you, who I may not be seeing often - I had my 4th chemo last Tuesday - same as usual - everything went reasonably well and again, whilst not pleasant it was 'doable'.  I must admit, though that it was really difficult to walk into the hospital again.  I started feeling sick even before I got hooked up.  Power of suggestion!

So, I have two more to go.  Then surgery, possibly late July/August.  I will know a date at my next Surgeon's appointment mid July.   

I've asked for another two months off work, so will basically be on leave for the entire chemotherapy experience.  I thought it was best to concentrate on getting better and I couldn't really reconcile with going to work when I was only feeling 50% well. 

Apart from that - I'm fine.  Feeling reasonably strong.  Still bored (so appreciate any social diversions  - home or out (if I'm able).  

Hope you are all well

Lots of love

A self-reflecting Kay

Journey - nearly half way there!!!

Three down, three to go!!!

It seems strange that you tend to time your life around chemotherapy sessions, but it seems the way to go.  It really is very routine like - you know how you are going to feel on day 2 (OK), 3 (Shit) or 4 (semi-shit) and when you are going to start feeling  a bit more normal.

Its now day 5 and apart from having a case of the hand shakes, and feeling a bit fragile, I'm starting to feel a bit better.  The lethargy seems to have gone and now just have general tiredness.  Feeling a tiny bit nauseous today for some reason but not too bad.

Big Brother's visit

Greg arrived last Saturday for a couple of weeks visit which was lovely.   I introduced him to Perth's sunset by having dinner at Cocos in South Perth.  Its right beside the Swan River and the views are spectacular.  We watched the sun go down and the city lights come up.  Lovely.

Sunday, we had a bit of a tourist day and went down to Fremantle and visited the Maritime museum plus had a drive around. 

We also went to Kings Park (which for anyone that hasn't been to Perth) is absolutely wonderful.  Greg was very impressed.

Then, Monday was spent getting ready for Tuesday (chemo day)!! - shopping, making sure that I had food that would be appetising etc. 

Greg has been very good carer and cooked dinner for me each night.  He has been very patient whilst I've been having my marathon sleeps.  He's already read 3 books and anything else he can put his hands on.

He's also been very accepting of my crap TV diet.  When I've wanted to watch home and away and the Biggest loser (yes, I know, I watch crap)  - for those of you who know Greg, probably can't believe that he sits there quitely while I get my nightly does of crap TV. 

But, I returned the favour by watching 2 hours of Rugby league without complaining.  I even did a very week 'hey' when a try was scored!   

Tuesday's chemo session

Very very long day.  Went into the hospital at 8.30 - got home around 4pm (after stop at the Vets to pick up cat food).  It was incredibly busy and the nurses were really run off their feet.  Lots of waiting this time.  Waited to see oncologist - waited between bags that had finished dripping and needed replacement. 

No problems with the treatment, although it is not really very pleasant.  Always feel incredibly toxic and invaded after the visit. 

Asked the oncologist lots of questions regarding immune system etc - wanted to know chances of catching stuff.  Apparently the risk is with bacterial infections rather than virus's although catching a cold can be a problem.  The oncologist still won't recommend gardening (tried to get an exemption!!) but did say that I could probably do pottery - long as I was careful about cuts!!)

Apparently my body is recovering very well from the chemo bombardment - that is, the white, red and platelets are recovering between sessions.  My levels weren't that much lower than someone who wasn't having chemo.  So, that's great news.   So, whatever I'm doing is working - not sure what it is though!!

I am trying to eat reasonably well, having heaps of sleep (my ears get sore from lying on them all the time) and I'm pretty relaxed.  So..... all good. 

The Next Week

Well, as I said, I'm starting to feel a bit human  so hopefully will be able to do a few more things.  As I said before, you have to plan all of your life around chemo and how you are feeling.  Will start feeling back to normal by next Thursday, so we have a trip planned to Cerventes which is about 2 hours north of Perth.  We're going to stay overnight at the local motel.  Cerventes is where all of the Rock Lobsters come from and is also home to the Pinnacles.  

Will be nice to get out of Perth - I haven't been away from the house since early March. 

Then Greg leaves on Sunday and I have one week of feeling well - so am planning to go down to Pam and Nicki's at Dunsborough for a couple of nights of R & R. I'm looking forward to their hammock, sitting under the trees near the beach and being spoilt with Nicki's cooking!!

So, that's all for now.    Things are going well (although very slowly!!)

Lots of love Kay

Photos

Warm (Panda hat - courtesy of Cheryl and Brad who brought it back from Melbourne for me)Bald (Head gets really cold) - luckily I still have my eyebrows but have lost a few eyelashes.
Trying to be fashionable (with scarf)

Reasonably smooth sailing

Thought I'd do a quick update as its been a week or so since last blog.

Happy to hear that people aren't thinking it too boring and self absorbing.  One of the things about chemo is that it takes away my brain's theasauras.  So, I'm not writing at my usual fantastic level at the moment.  The amount of times I'm trying to think of a particular word and can't come up with it. Very frustrating.

SECOND CHEMO

Now on day 6 from last chemo. Wasn't as nervous this time and although still not a pleasant experience, it all went smoothly. The oncologist was pleased with my reaction to the first dose. All my blood cells, kidneys etc recovered ok and the side effects were manageable. So all good. After the chemo, I always feel a bit 'invaded' because you know you've got all this crap running through your body and that it's highly toxic, however, it's also highly toxic to the bump, so I have to keep reminding myself of this..

I don't know how I'll feel with number 4 or 5 chemo because it's such a long process.  Hard to keep feeling positive!

Kris came with me which was nice. Nice to be a bit spoilt. Tried not to milk it too much but did get all meals etc handed to me (lovely). I was appreciative of it, and showed my appreciation by spilling a whole plate of tomato soup over the kitchen floor.  Bugger because it was yummy soup.

Kris had a first as well. She injected me the next day (in the belly). I thought that was terribly brave (for both of us) and she didn't hurt a bit. that injection is supposed to help red blood cells recover.

Also, we removed the rest of my hair and I got a number 0. My hair was coming out sporadically - bald around the sides where I sleep on it and still there on top. All I had to do was grab the hair in my hands and it was coming out. So thought it would be best gone. Less hair to vacuum. Feels quite strange (but clean) and I now really look like a cancer patient.

SURGEONS APPT

Also had a follow up appointment with the surgeon's side kick. The aim of this was to see how I'm responding to the chemo and how the lumps responding. Good news!! The doctor found it difficult to locate all of the tumor. The actual mass (width wise) hasn't shrunk, but the proportions have and it has softened considerably. She was very pleased with that. Considering it was only 3.5 weeks since chemo, it's a good sign. So basically, as my body is responding, they are going to continue with the chemo (for the six rounds) and then operate. Looks like it will be late July, early August.

So, whilst I was there, I had another ultrasound, and with an injection, they placed two titanium markers in the lump so that when they'd operate, they'll know what to remove. They are about the size of uncooked grain of rice. Apparently, I won't buzz if I go through airport which would be a bit embarrassing.  I won't go into details of the injection, but needless to say, watching a thin needle going into your breast (via ultrasound screen) was a bit yucky.  Didn't hurt though because I asked for a double dose of local. 

NOW

So, my sister kris flew out Friday which is a bit of a bummer. Was a bit morose and sorry for myself but also realistic that I can't have someone here all the time. Sonny has given me a couple of extra cuddles to make up for it and Pippa popped in and took me to get some DVDs and also had a cuppa. Slept 12 hours Friday night. And have slept for about 3 each day.  The weekend was in the midst of the tired period. Apart from that though, don't feel too bad. Actually quite surprised.  Having one more day at home, and planning to go out tomorrow.  Feel very housebound. 

Have appetite, although for smaller portions and only a little bit icky in the stomach. Have a bit of a headache, but only a constant hum. No sweats so far (fingers crossed) but today has been quiet cool. Last chemo 39' this chemo 22. Much more bearable.

NEXT WEEK

Got to find a project to do. Bummer not being able to garden, so i need to find something to occupy my time. Kris suggested scrapbooking, but I could think of nothing worse. So, need to get creative brain out (albeit clouded).  Am thinking of doing some wall art - you never know, might get my own exhibition (doubt it). 


GOOD NEWS
Just got a phone call from income protection insurance.  Claim has been approved and will get my first payment on 4th May.  So that makes me feel MUCH  better.  It was really easy and very pleased that I didn't have to go through rigmarol.

So, that's about it for now. 

A feeling pretty good (but bored) Kay xxxx

First couple hurdles covered

And they weren't toooo bad (the hurdles) So, it's now 14 days since my first chemo, and thank goodness, the memories are fading....

So, what do I remember....

• I remember sweating about 10 litres of water every night and I learnt that a wet tea towel, although not a fashion statement, is an essential item to wear around the head while watching tv (thanks sylvia for the hint).
• I remember thinking that I'd fall over if someone pushed me, because I felt so weak and that what I knew as tiredness, was simply weariness, because I now know what tiredness is.
• I can now also remember my teen age years when I had pimples, because my face broke out in pimples.  I could easily do a before "proactive acne " commercial at the moment.  Doesn't look good. 
• I also learnt that plain yoghurt and tap water are laced with salt. And that I really enjoy watermelon and icy cold grapes.

I also had some pleasing sideffects from the cortisone. For the first time in months, my muscles felt relaxed and my sinuses were really clear. So, for someone that generally feels as stiff as an ironing board, it was a nice feeling.  Interesting that aches and pains have only come back in the last few days. I had a massage the other day, and the masseur commented on my muscles, not feeling as rock hard as they do usually do. 

So, overall although the first week was not pleasant, if I only feel this one week out of three, then I can handle it. (She says after only one chemo session!!!)

Second week.....

Started feeling better around day 6/7. Still felt tired but got appetite back and only was sweating about two liters of water per day and finally relinquished the tea towel.

Kris (my sister) arrived day 8 and it was so good to see her. Great welcome at the airport by me bursting into tears.

Don't know whether it was Kris, but I started feeling better each day (I'm sure it was Kris!!) Still required an afternooon nap and a sleep in, but really nearly felt back to normal.  Felt like I was on holiday.  After all of the stress of the last couple of months, it was a great feeling.  Really needed it!

Both Kris and I felt like we were a bit fake - she'd come over to help me (and I didn't really need it).

But I'm trying to convince her how better I'd feel if she cleaned out my cupboards and did the windows.  For some reason, she's not believing me.  Selfish some sisters are aren't they!!!

Hair loss.......

As you can see by attached photos, I decided to pre-empt hair loss on pillows by shaving it all off. After spending hours lamenting the loss of my hair, it ended up being relatively painless. 

I'm sure that Kris was pleased that she didn't have a hysterical sister on her hands, because for some reason, I had worked myself up for this and thought that I was going to be quite upset.  This was one reason kris came over when she did.  

Went to this place called "Curley Sues" and although I hope that none of you have to go through this, I'd really recommend Curley Sues.  They sell wigs, hats, scarves etc and are extremely helpful and emphathetic.   Anyway, originally we had planned to buy a wig, and then go to my regular hairdresser later that day and get hair shaved off etc.  But Curley Sue's provided the whole service and to make it even better, the lady that shaved the hair off, had also had breast cancer so was very nice about it all.  She was very bubbly and sort of diverted my attention from the first 'swoosh' of the razor.  Both Kris and I also hadn't of thought that I didn't really need to get it all off at that time and could go for a number 4.  So, it wasn't as traumatic as having a bald head.

Kris was on hand with the camera and apart from me having a bit of an initial cry, it came off pretty well. Then they fit the wig and cut it etc to suit.  So, as you can see it looks pretty similiar to my usual style and really, apart from me knowing its not mine, doesn't look as bad.

But it is a bit unusual to wear and it hurts a bit  - it needs stretching so I haven't been wearing it all the time.  Plus its a bit hot.  So, even though I didn't think I'd be able to, I have gone to the shops wearing one of my hats and still feel like it looks OK.  Does feel a bit odd but.

Third week
Really, I'm back to normal.  Still got the pimples, still am having a nana nap but apart from that, pretty good.

However, today, my scalp has become quite sensitive and if I pull at my hair (the stubble), its coming out.  So Kris, says not to pull!!  So, it looks like I'll be moulting over the next few days. 

So, that's it for now.  Going to enjoy the next few days (great weather here in Perth) and then get ready for next Tuesday (next session). 

Thanks also for everyone's good thoughts - its been lovely getting the emails and SMS's etc. 

Bye for now....

Kay xx

Chemo, an interesting stop on my journey

Well, when a nurse says "here come your ants in you pants" you know you are in for an interesting experience. To explain...they give you a drug that quickly follows with extreme itching in your places where number 1s & 2s are usually from. When asked why that happens, they couldn't explain! Luckily it lasted only a minute or two.... So, saw doctor first and he measured the lump (2mm change but could be error because only manually measured). Went thru procedure and filled out my insurance claim. Nice guy. He has studied for 17 years to be where're he is. Went in st 10.30 and left at 2. Pippa had a look at the time but I must admit I was feeling quite apprehensive. I was glad that pip was there ( yeah pip!!) Got drip in left hand. Had 1 liter saline,red stuff, another bag of stuff and then another bag of stuff. Nurese was lovely and went thru everything with me. It's a big room with lots of comfy chairs. Probably about 20 people wine thru with me and I took the longest. BC treatment can take a while. Generally she said about 2.5 hours but I think they took it slow for my first time. Started feeling clammy and sweaty around half way but that was ok. Not sure I had a small alertly reaction with last drug. Got itchy arm and face. Wasnt sure whether it was physco semantic (sic) but they took know changes and gave me an antihistamine and some cortisone. So with that and anti nausea drugs I'm full of shit! But hey, that bloody lump is now going "what the #%*£? Is this!!!!!! Yeahhhhhhh So tomorrow, I have to go to local surgery and have another injection (anti allergy) they said I could do it to myself. Jab intummy fat. But was worried whether I had enough so thought a professional should do the first one. Also have to continue with anti nauseas for couple of days. So I feel ok now, bit funny in the tummy but ok. Had some avocado for tea and it tasted yuk. Side effect is a metallic taste in mouth. They say to use plastic cutlery because metal spoons etc can make it worse. Anyway. Ended updating tea with mostly fingers. Have a shopping list to do. So, all ok so far. As u may have guessed from tone of email, I feel more positive. Let's see kwhat the next couple of days bring. Byrne for now The incredibly chemically toxic Kay (with a lump that's goin ahhhhhhhhhhh!!!) Sorry for no paragraphs for some reason didn't work

Next Stop, Chemo

Not really in the mood for being creative - so apologies for the 'dullness' of the narrative.  Feeling a bit blahhy....

Went to oncologist yesterday.  Dr Andrew Redfern.  Really nice guy - fairly young.  Very easy to understand and has a really nice way about himself.  Didn't feel uncomfortable at all.

First Chemo starts next Tuesday 6th.  Apparently I'm undertaking a reasonably typical treatment regime.  I looked on the web for some information that explained it all fairly clearly and came across this link.  This really replicates the information he gave me. 

http://www.macmillan.org.uk/Cancerinformation/Cancertreatment/Treatmenttypes/Chemotherapy/Combinationregimen/TAC.aspx

So, I'm in for 6 treatments every 21 days of a treatment they call TAC.    The actual treatment only takes a few hours, however there's a bit of rigmorole prior and after that and then of course, its how I handle the side effects.  I must admit, I've heard (and read) lots of variations of experiences - some reasonable, some bad and all in between.  So really, I just have to wait to see how it impacts me. 

I've decided to take some time off work (2 months).  Luckily I have income protection insurance - I have to go one month without work prior to claiming but after that, at least I know my mortgage will get paid.  It really is a great relief to know I don't have to worry about it.  I'll have to be a bit carefull finance wise as I only get a percentage of my wage, but its more than manageable. 

So, I've spoken to my Chair & Vice-Chair and nearly everything's worked out.  I just have to finalise a few bits and pieces and go through things with my staff.  They are going to be doing a bit more and then I've pulled out of a few committees etc that I'm on.  Its all fairly manageable thank goodness.  Makes me feel a bit superflous but I can handle that. 

So, that's about all for now.  I'll do another update after my first round of chemo. 

I know I'll probably be at home, waiting for all of the side effects and thinking the worst.   I know I did that years ago (many years ago, in my wilder teenage days), after smoking some herbal stuff and waiting to see if I got any buzz.  Ended up, it was a dud... Hopefully this will be too....

Lots of love
Kay

Shit - what a journey!

Well, seeing I'm going to be on this incredible journey, I thought I'd do what I did when I went overseas for my long trip, and start up a blog....that way, all my friends and family can keep up to date with what I'm up to and....

 

 

If I'm having a shit time - I'm going to let you know know so that you can 'ramp' up the sympathy and 'attention'.
If I'm having a good time - you can still ramp up the 'attention'
And if there's no change - you can still ramp up the 'attention'.

 

 

So, I think you've guessed it...I'm going to wring this out for all of the attention I can get!!

 

 

No seriously, because I live by myself - and although Sonny is great (fantastic)  on cuddles etc, he's not very good on the practical stuff (ie support, company, diversion).

 

 

So, I'm going to looking for some of that from everyone else.  Sorry!!

 

I can't believe that only four weeks ago, I hadn't found the lump.  And had no idea.  I had actually registered on "E Harmony" and this year was going to be my year of perhaps getting out a bit more and even going on the odd date or two.  I was also thinking about renting out my spare room to an overseas student -to bring in some extra $$ and have some company. Yes, Kay was actually thinking of dating....

 

So, in the space of a few weeks things have changed slightly (understatement, its been a gargantuan change).  The past couple of weeks have been like a whirlwind.  Doctors appointments, tests, crying episodes, more tests, crying.  I think my heart has been beating twice as fast since then.  And my stomach muscles have been in knots. 

Amazing what stress can do for you.  I thought I was actually doing OK (physically) but realised by how tired I felt that the stress was actually doing to me.  I was so tired!!

 

This weekend, was probably the closest to normality for me - actually felt quite sane and in control.  Still very tired (long nanna naps) but a bit more relaxed.  Had lunch with a friend on Saturday and did some gardening on Sunday - planted some celery so that I can have some carrot and celery juice in 3 months. 

So, here's where I'm at.

• There are no secondaries (yeah, big yeah, huge yeah!!). I had imagined the worse so this is great news
• The lump is about 4 cm and its labelled as a Grade 3 cancer, which is aggressive and grows fast.  Its in my lymph gland (hence the worry about secondaries)
• There is a chance that they can 'conserve' my breast (love that term) so they are going to try and shrink the tumour first with Chemo, then a lumpectomy (if it shrinks), then radiotherapy to finally kill the little #@^%$.
• I'm in for about 6 months of shit!
• A bonus is that the chemo will also probably bring forward menopause so I'll look forward to the sweats etc as well but no more periods...

 My appointment with the oncologist is Monday the 27th and chemo will probably start the following week.  I'll know more on the 27th about timelines etc.  At this stage, chemo usually goes for about 3-6 months.  You get chemo once per week, have two weeks break, repeat, etc

I haven't formally made a decision about work - whether I should give it up (Thank goodness, I have income protection insurance) or whether I should try to rally on.... I'm talking to my boss next week + getting some further information before I make any decisions.  Because my job holds quite a lot of responsibility, I'm not sure whether I want to take that on.  However, it might also be my 'dose of normality' that I need. 

So, this is the first blog!!  I'll try not to be too depressing in the future, but I thought it important that:

1. you all know what I'm up to and how I'm feeling
2. I think its also going to be good for me to 'unload'  I already feel better after penning this. 

So, bye for now..... I'll update you all when I know a bit more.

PS.  I've named the lump "Barbarella the Breast Bump".  I originally called it Barbara the breast bump, but thought that anyone named Barbara might be offended.  I hope there's no Barbarella out there.