me - 12 months on

holy cow November is the month for anniversaries for me now. It's now been 12 months since my BC diagnosis and surgery and today is my 4th wedding anniversary.

People keep asking me 'so you're ok now?' and I don't know how to answer. I feel physically ok in that I am no longer doing chemo where I feel ill and tired and achy all the time, I've finished radiation and my burns have healed but I'm not ok mentally. I spent so many months concentrating on myself and getting better that going back to 'normal' has been hard. I find myself wondering how I managed before C. The trouble is treatment ended but the scars and physical and mental reminders remain. I can't sit or lay quietly because my thoughts become consumed with the 'what ifs'. What if it comes back? What if I can't have kids? What if the doctor had just run tests sooner when I went in with the lump under my arm? What if I lose my job because of the time off I need to see my doctors?

It's hard not to let these things overcome me and it is getting a little easier and I look forward to the day where I don't have these things stuck in my head and when I can look in a mirror and feel like the old me, the carefree person who was on the verge of having what was going to be the most exciting year/journey of her life. I still pine for what could have been but there's no point in getting myself worked up over it, I choose to think that we're getting additional time to get our lives in order to a good place where it makes things easier in the future.

Onto less depressing matters. We went away last weekend to Busselton so I could cross something off my non-bucket bucket list. I actually went through with it and fell out of a functioning plane at 14000ft. It was the most exhilarating and liberating thing I've done and I felt so calm about it all. I wouldn't have been able to do it if I hadn't lost weight. 48kg gone (hopefully forever but I'm realistic that I may regain some eventually) I can finally do things that I always wanted to or never felt confident enough to do. I actually bought and wore a bikini to the beach, the first in more than 20 years. The next step is hopefully having my breast reconstruction/augmentation and probably a tummy tuck to get rid of all the excess skin around my middle.

I think without having lost the weight my mental state would probably be a lot more fragile as I'd have all those self loathing demons to work against as well as fighting the C. Maybe having the sleeve was what saved my life, maybe if I'd been more insistent earlier in the year when I saw a GP about the lump under my arm the cancer might have been found sooner.

Well I think I've taken enough of everyone's time now with my drivel.

One last thing, seeing as it's my anniversary I just want to say that Christopher (no middle name) Bardsley I think you are the best thing since hot chips (and we both know how much I love hot chips). You make me feel like the most beautiful woman in the world, you give me confidence and pick me up when I'm down and through this absolute prick of a 12 months you've been my rock. I'm so happy that you laugh at the same things I do and that you think my lame quips and jokes are funny. I love that you GET me and I don't have to pretend to be a lady around you cause we laugh at each others farts. I love that you let me get my way 99% of the time. I love that being with you is so easy. You are my air, my life, my love. The last 4 years have definitely had its ups and downs but we're still here and still strong. Here's to many more decades of crazy, stupid love.

holy shit!!!!!!!!!!!!!!!!!!!!

look at me ma!

I actually went out in public with my tummy on show :)

the inner workings of my mind

WARNING: this post deals with a lot of emotion and my feelings on death so please do not read if you think this will make you feel uncomfortable. I don't want offers of help or counselling or your pity. I only wrote this as a way to get it out of my head and so that people can understand more.

well here we are again, I am at number 14 of 30 days of radiation.

Everything has been going well so far, I've had no burning, blistering or discolouring as yet so my fingers are crossed that I may come out with little damage to my skin. The skin around the scar on my breast is tightening so the scar is more pronounced but that honestly doesn't bother me as I see it as my warrior badge. One I will wear proudly to show I survived this bastard of a disease.

I've been left with my thoughts a lot these last 10 odd months, something which can be pretty dangerous. First and foremost in my mind are Kylie and another woman I knew who passed away from breast cancer a few years ago. These have been the only two people in my life that had cancer so I base a lot of my life and whats happening now on what happened with them which I know I shouldn't do as it's only going to make me feel worse but the thought is always there in my mind that this will be what gets me.

I think pretty much every day at least once I have thoughts that I'm going to die because of this and that scares the shit out of me. Some days I wish the cancer had just taken me.

I hear songs on my phone or on the radio and I think 'I must remember to write this down so they can play it at my funeral'. I think what sort of casket I'd like, what type of service it should be, whether I want to be taken back to Kalgoorlie or stay here in Perth. It's a morbid fascination but one I can't help and it actually brings me some peace of mind to know that I will have some input, that a part of me will be in the planning.

A lot of my hatred for this disease is the fact it may take away my ability to have children. Something that we wont know anything about for a couple more years. Don't get me wrong I have thoroughly enjoyed not having any periods for the last 10 months but it also makes me feel less like a woman. I see women I know on Facebook announcing their pregnancies, watching them grow, having their children and raising them and I know that it's something I may never get to experience and I hate them for that even though my problem has nothing to do with them. I hate them for having the things I want, the things that were meant to come to us this year.

I had only just begun to get my life back with my weight loss only to lose it 10 weeks later with my diagnosis. I was so angry and I still am. It's not fair.

Believe me when I saw I will continue to fight this crap, I am not giving up on living my life. I just wanted to share that it's not all rainbows and sunshine in my head.

One thing I want people to really understand is that although my treatment is finishing at the end of the month none of this magically disappears from my life. I wont ever forget this hellish 12 months, I will carry it with me always. The same way I will carry the fear of it coming back.

Remember me?

I've fallen off the wagon with writing these things and I now remember why I began this blog. Not only to have a record for myself but to keep all of you out there in the loop so I'm not repeating myself every other moment with people asking where I am in my treatment.

So here we go.

I had minor surgery on Tuesday to remove the last of the cancerous tissue that surrounded my tumor. My 'margins' should now be clear which means there should be no more cancer in what's left of my poor shriveled booby.

I will have another appointment with a radiation oncologist to get measured for my tattoos (itty bitty ones to mark where I'll get zapped) and hopefully the actual radiation will begin early August. I'll be doing between 5 and 7 weeks where I'll be going in each weekday for treatment.

After that I should be cancer free. Hooray!

I got to meet the inspiring Sam Johnson when he traveled into Perth a couple of weeks ago. I felt rejuvenated after speaking with him.

Been keeping myself busy as much as one can but I want to go back to work (just not my work haha).

Last night we went to the opening of the preview exhibition of 'You Are Beautiful' and I gave a short speech about my story and why I was participating. It's weird to have strangers come up to you and say that you're an inspiration, that I made them cry and want to hug you. But if I can help others then its worth it.

My hair is coming back at a snails pace which I am super happy about. I'm enjoying spending time with my dad while he's here for his treatment even if I do hear the same story about him leaving for Kalgoorlie  as soon as his last zapping is done each time I see him.

At the moment I only have one original fingernail left scratch that I now have none. Makes everyday tasks more difficult that's for sure.

Chris and I are enjoying taking the quad bike out and riding. As much as going fast on it scares me its pretty exhilarating at the same time. We just need to get out there more often.

That's my life up to date now I think.

Peace and love.

at the opening last night

my portrait

realising how much makeup makes me feel normal again

gussied up for the P!nk concert

meeting Sam Johnson

me being me

Welcome back

Wow it's been a while since I did one of these, so long I can't remember when the last was. Or maybe that's my chemo-brain in effect.

Anyways not too much has been happening. Everything has been going swimmingly on the treatment front lately, I've been having chemo at the 3 week intervals as originally planned.
I have my next surgery booked for the beginning of July (more tissue removal and only in for the day) which means I should begin radiation early August bar anything being delayed or recovery from the surgery taking more time.

One thing that I am actually looking forward to is my final chemo this week. It will be nice to have these horrible drugs over with so I can move forward with the next phase, considering I should have been done with chemo at the beginning of April had I not kept getting sick I think I've handled it all pretty well.

I spent nearly a week in Kalgoorlie which was great for reinvigorating me, I've felt so isolated/alone and missing the rest of my family. I caught up with an old friend and learnt how to ride our new quad bike (yup we bought a quad, more on that soon). I spent time playing with my nephews and niece and teaching my sisters how to bake. In all it was just what I needed.

I'm going to leave it here for now as I will probably write another post later in the week.

Sleepless in Secret Harbour

So here we are; it's 12.35am and I'm still awake despite going to bed 3 hours ago. I sit just me or does time seem to move quicker when your lying in bed not able to sleep? I was hoping I'd be able to have an early night tonight as I was up until 2am last night and awake at 8 this morning. That plus I have to be up at 4am today to take Chris to the airport isn't helping my situation at all. I'll most likely try and get some more sleep when I get home but I'm booked in to have my next chemo at 10am and I want to go to a couple of shops before that in case I feel like crap after.

I've been feeling well lately and hooray I wasn't hospitalised after my last treatment which was a nice break. But I've had an extra week off treatment this time (as with all my treatments for varying periods, one was even an extra 4 weeks off!) as my neutrophils (to do with the white blood cells and the bodies immunity to infections) were really low; like 0.9 on Monday and a normal persons is between1.5 and 7. So it's taken me a month to get to this point so I was doubtful when Dr Gan (my medical oncologist) said they would be up to a normal level today. Well waddaya know they're only at 1.1 today.

So naturally this makes me highly paranoid that I will end up back in hospital at some point in the next two weeks. I am seriously becoming a hermit for the first couple of weeks after treatment these days.

I've been truly amazed with the outpouring of kind words and support from the most unexpected of places; old high school acquaintances. The messages have been so lovely but their memories of me have really left me stumped, being told I had a kind face, lovely smile or friendly nature isn't how I remember myself or my high school experience. I always saw myself as the doggy looking overweight loner that people either ignored or made fun. I certainly never thought of myself as being these things that people have described me as. It's been a confidence booster so I thank you.

It's been fantastic having Chris home his last few swings off work. I'm laughing more and having more fun than I thought possible. Still feeling extreme amounts of guilt for all the work he does at home that I don't/can't anymore.

I attended my first BC support group this week and I chose to go to the one aimed for women under 40 as I'm struggling with the feelings I've been having of this making me into an older woman before my time. I had a lovely time and met some beautiful women who have given me a hope I don't think I had before that there will be life after cancer. I'm going to go again next month, my only gripe is its in Leederville and all this travel for appointments etc is starting to take its toll so I'm definitely dreading when the time comes for radiation and I need to go into the city each weekday. I feel for those that work in the city and do it every day.

As some/most of you know my friend Jamaine and I entered a cupcake competition a couple of weeks ago and won which advanced us to the grand final. This too has given me something to look forward to. Not only the competition but spending time with my closest friend. She's one of very few people who know me the best and I'm so grateful to have her in my life as well. Sadly my disease has opened my eyes to the fact that some of the people I counted as really good friends have backed away from me and its sad to see that happen. I realise friendships are two way streets so I am also to blame but I think a little consideration is needed for my situation. The good news is more people have stepped up than backed away and because of my BC I have reconnected with 2 great people and that makes me so happy. So to Rachel and Bethwyn thank you very much for making this sick chook  smile .

I think I'll leave this post here for now. It's 1am and I really need to try and get some sleep. I may add some more to this post tomorrow so stay tuned.

Xoxo
Kirby

my bucket list

now don't go getting your knickers in a twist this is not me telling you all I'm suddenly terminal.

I'm writing these down so I don't forget and to give me something to look forward to doing in the MANY years I expect I still have left after I kick the cancers arse.

I may come back and add to the list as I come up with more things I'd like to experience but for now this is it.

1. Go skydiving
2. Travel through Europe
3. Go back to Bali and renew my vows with Chris
4. Learn to crochet
5. Make a quilt
6. Visit Las Vegas and New York
7. Take a photography course
8. Create my family tree
9. Foster at least one child in need
10. Donate more of my time to worthy causes

jiggly bits

since I started this blog initially as a way to document my progress with my sleeve I thought I'd write another post today seeing as I haven't mentioned my weight loss progress in a while.

So here we are and I am a full 6 months post op now from my sleeve gastrectomy and I have as of this morning lost 39kg.

What goes along with this significant weight loss is a lot of excess skin hence the title of this post. I wobble now more than ever before and I still want to lose at least another 10kg!!!

I started this journey at 131kg with a BMI of 42.7 which put me in 'obese class III', I was sitting between size 20 and 22 clothing and because of my weight I was having issues with my knee joints.

I am at the moment 92kg, my BMI is now 30.04 which is 'obese class I' (only .04 to get into the overweight class', I am now wearing size 16 and 18 clothes and I no longer experience pain in my knees when I climb stairs.

I look forward to going skydiving later this year as I now come under the maximum weight limit.

On the flipside I feel severe shame in how big I let myself get but I share my story to let others that are unhappy with themselves know that they are not alone and they have power to change their life.

I have also come to the realisation that no matter what I think of other fat people and their size it is ultimately up to them how they choose to live their life. Through the help of a friend I have seen the hapiness and joy some obese people experience in their life without the shame or unhappiness of their size.

I think people need to realise that just because they have negative feelings about another persons body or life doesn't necessarily mean that other person feels the same way about themself. It's just like opinions, just because you have one it doesn't mean it's right.

keeping on

it's been a while since my last update and some stuff has happened since then, nothing overly interesting in the grand scheme of things.

I did my second chemo on the 24th Jan and got to spend the weekend with my parents, Carrie and the ever cute Jake. We had a great time catching up, laughing and having nerf wars. A good way to recover and cheer up from Jellys passing. I didn't get fatigued, had minimal nausea and was in a better frame of mind this time around.

Things got a lot worse from there though.

I was admitted to hospital on the 3rd of Feb with febrile neutropenia again, this time we threw in some anaemia, septicemia, clostridium difficle and blood pressure that bottomed out at 30/60 for a couple days. Same as last time, began feeling unwell and feverish and when I checked my temp it was above 38 which means I need to see a doctor as soon as possible.

Spent most of the first night in a exam room in emergency (the beauty of neutropenia is you get kept away from all the other patients) waiting for a room to open up in medical ward. Eventually moved at 1am and by that point I could barely walk on my own as my blood pressure had plummeted.

Now when this happens you need to be given a drug that contains adrenaline and they can only do this in the ICU at Rockingham so it was decided I needed to be moved. This also means complete bed rest to keep the BP stable so lucky me got to have my first catheter and I can't begin to tell you how weird it is to not feel the need to pee or even know when you're actually doing it.

So 5.30 in the morning with only a couple of hours sleep in me (they were doing my BP every half hour and nurses felt no need to be quiet when talking around me and I was trying to sleep) they transferred me from medical to high dependancy unit. They removed my PICC line shortly after and sent segments and blood taken from it for testing to see if that was the source of the infection (it wasn't) so I was back to having canulars put in.

They started me on a bunch of different antibiotics at once so I had 3 canulars in at the same time, right elbow and hand and one in my foot (my veins have all but collapsed).

They monitored my blood pressure for 24 hours to see if it would come back up on it's own but it didn't so I had a central line inserted into my chest Tuesday afternoon. Now if you are ever in a position to require a central line and the doctor assures you it wont hurt don't believe them for a minute. It hurts, from the needle of local they give you to the insertion of the wire it hurts. I think mine was more painful because the wire was scraping my clavical as it went in and I could hear it doing that but they still hurt being done.

Anyways once the line was put in my BP went back to normal before they even started giving me the drug, gotta love adrenaline. They started the drug and my BP stayed up from there on. The following couple of days were pretty uneventful, they slowly lowered the dose of the adrenaline, I developed c-diff from all the antibiotics I was on and I was still bedridden.

By the weekend I was able to get out of bed and sit in a chair and my catheter was removed. They were debating whether to move me back to medical ward or discharge me. Monday morning the doctors decided I was well enough to go home. So after waiting 4 hours for my discharge papers and drugs we were on our way home.

It was pretty boring for a few days after that, we stayed home and just Chris went out when we needed anything. Thursday was interesting though, we headed out to go get mats for my car and then we needed to go to Rocky CIty to get some dvds we'd bought online unlocked. While we were there I decided to check out a clothes shop that was having a sale. I'd already begun to feel unwell before we went into the shop and I really should have not been a complete dumbass and gone and sat straight down after I started feeling faint in the change room but I was a dumbass and waited with Chris at the counter as he paid.

I decided a bit too late that I needed a seat and the last thing I remember after telling Chris I was going to wait outside while he paid was turning to go out the door. I woke up on the floor after that.

This is what Chris tells me happened, I turned to walk to the door and didn't even take one step before I began to fall. The fan I was carrying dropped out of my hand first then I started to topple forward, my arm knocked a clothing rack on the way down and he tried to grab me but it was too late, he did manage to stop me falling completely on my face but I still whacked my face somewhere cause when I came too my upper lip was pretty sore. He says I wasn't out of it for long and when I woke I was surrounded by the shop assistant and a couple of customers.

All in all pretty damn embarrassing.

Needless to say I've been taking it pretty easy since then.

Just a few days later I was back at the doctors with what turned out to be a superficial thrombosis in my right upper arm. I've been having to do blood thinner injections daily since and will be on them until my oncologist says to stop. The clot cleared pretty quickly once I started the drugs and hopefully I wont be having anymore thrombosis.

I saw my oncologist last week as we had to delay chemo again due to the hospital stay and infection. He wanted me to either have another PICC line or a infuser port put in. Well he wanted the PICC but I didn't and suggested the port. I decided against another PICC as I want to be able to go to the beach and go out without worrying about having my arm covered so people dont see the big tubes coming out of my arm.

So in 2 days I am going in for day surgery to have the port inserted in my shoulder, this will be my 4th general knocking out since September and it still freaks me out a little.

Hopefully the healing from this will be quick enough for me to do chemo on the 14th as I will be 6 weeks behind schedule by then and I want to get this over with. The longer treatment takes the longer I'm off work and not earning. As much as I whined about not wanting to go to work being home all day everyday can be just as bad, made worse by the loss of my income.

The good thing about not having had chemo for 5 weeks is I'm feeling pretty damn good at the moment. I have more energy (still a lot less than normal due to all the inactivity), my sense of taste is almost back to normal and I just feel better overall. I even managed to do some baking this weekend which is something I have sorely missed doing for the last few months.

I caught up with my dads sisters and a cousin today which was great as I hadn't seen one aunt since my wedding (I think, chemo brain could be mistaken though) and the last time my other aunt and cousin we didn't really have a chance to catch up and I was still in shock from my diagnosis. It was great to sit around with family and just chat and hear about when my dad was growing up.

So that brings you up to speed. Hope it wasn't a case of TLDR, I know it was a long one.
Fingers crossed for less hospital admissions and fainting episodes in the coming months but then I wouldn't have much to blog about haha.

goodbye Jellybean

I've felt like part of me has been missing this week and really there has been.

I got out of hospital Monday afternoon and spent the evening with Chris and the dogs. Jelly seemed fine that night but by morning she was a lot sicker. Chris had spent a lot of time up and down during the night with her and when I woke just after 7 she had been coughing for a while. (Coughing is a sign in congestive heart failure dogs that their lungs are filling with fluid).

Chris gave her extra medicine in the hopes that would slow her heart and begin to dry out her lungs but it didn't help so around 7.30 we decided to drop her at our local vets to be put on oxygen and for the vet to see her when she got in.

We had already discussed what we would do if she had another coughing episode so we knew in a way what was going to happen, we were just waiting for the vets confirmation. Around 9am Lucy (critical care vet) called Chris and confirmed our worst fears, Jelly had reached the point where medicine would do nothing more for her. We agreed we would head to the vets and do what we needed.

Waiting at the vets was almost as hard as saying goodbye, we decided to pay the bill before we went through to the consult room so that way we could easily leave. We had to sign a consent form for them to give her the drugs but I just couldn't do it, I felt like I was signing her death sentence (which it essentially is) so Chris had to sign.

We were taken through to a consult room to wait while they brought her in, she was still in the oxygen box and looked so sad. Her little heart was working overtime and her chest was pounding. Lucy pulled her out of the box and gave her to me and we could just tell she was struggling to breath and wasn't comfortable. We had a few minutes with her alone to say goodbye and give her hugs.

Lucy came back in after a while and told us what would happen and began administering the drugs. So we sat there and held our girl as her heart slowed and then stopped and she took her last breath, in all it was less than 30 seconds and her pain was over but mine began.

We stayed there and held her for a while longer and said our final goodbyes. Lucy was wonderful through all of this; giving us privacy when we needed it and we could also tell it made her upset as well.

Eventually as much as I wanted to stay there with her I needed to leave so we gave our beautiful girl to Lucy and went home and cried.

We decided to have her cremated and had already picked Lawnswood to come collect her and bring her home. Jelly was delivered home to us on Friday morning and the reality really sunk in that she is gone.

I don't regret the choice we made as it was best for her but I just wish I had more time with her, I feel like I was robbed of those 2 weeks because I was in hospital. It's been difficult adjusting to life without her. Gizmo and Millie are grieving, Gizmo especially has been very quiet since Tuesday and has mostly just slept the days away and refuses to play with Millie.

Jelly was such a big part of our lives and such a big personality. She loved to chase cats and play with Gizmo, she dominated a Weimaraner and took crap from no one. But she loved nothing more than sitting on a lap and having her ears rubbed, she always turned to putty when she had her ears rubbed. 

my beautiful girl

a photo from the shoot we had done in October 2012

in her jammies this last winter, cuddled up with me on the lounge

 

the not happy new year

No witty puns or remarks to be had in this post.

I spent my new year in hospital, 14 days to be exact.

On the 28th December our oldest dog Jellybean became very sick late at night so I spent many hours at Murdoch Emergency Vets with her. We were told her heart murmur had developed into congestive heart failure. Over the rest of the weekend I went back to emergency vets and our local vet after she had more trouble breathing.

I'd been feeling down (energy wise) since the Friday and I was focussing more on looking after my girl than myself but by Monday there was no denying something was wrong, I'd nearly fainted at the vets office and just had zero energy. By the afternoon my temperature reached 39 so I had to head to the hospital.

Now I thought it would be a simple case of doing a couple tests, giving me some drugs and sending me on my way but I was wrong. Turns out I was febrile neutropenic (fevers and no immune system) and that's not a good thing.

So I was admitted that night (New Years Eve) under the impression that I would be there a couple days (wrong again). Thankfully being neutropenic meant I got a private room, don't think I could have survived 14 days in a shared room. Neutropenia is where your neutrophils (to do with your white blood cells and immune system) drop below a normal level. Normal neutrophil levels are between 1.5 and 7.5 and mine were 0.05 when I was admitted.

Not much else happened for a while. I sat around for days while they tried to take blood and put in new cannulas, my veins in my right arm have all pretty much gone caput. So after a week of begging they finally relented and organised for the PICC team to come and put a line in my arm so no more needles.

I had a CT, chest X-rays, ultrasound and a gallium scan (2 trips to Fremantle in ambulances were required for this) and all came back with no result as to where the infection started. All in all they still had pretty much no idea what it was that was making me sick. By sick I mean I felt fine but was having regular high temperatures, on a good day I'd have 2-3 temp spikes a day and on a bad more than 4.

Anyway I pretty much demanded I be discharged on Monday as I had been feeling fine for a couple days and felt no point in being there another 2 days. So at 5pm Monday the 14th January I was finally released from hospital.

My hair began falling out on my third day in hospital so on the Thursday night I had Chris shave my head to reduce the stress I was feeling about it. We were meant to have our fundraising headshave BBQ on the 6th but I was still in hospital so we had to cancel that. My beautiful friend Thanh and Chris's stepdad Darren have both shaved their heads too.

Chris and I with our baldies

Darren - Chris's step dad

Thanh Le