It's been just over 2 weeks since my operation.

I am slowly getting back to my old routine and very much happy to be getting back to that.

My pain is subsiding and today was the first time attempting to drive. Hooray! It's quite sore but I'll get there and in the swing soon enough. Not having my own 'independence' has certainly been hard.

For the last 2 weeks I have been paying my doctor regular visits so he can check up on my drains as well as do some aspiration (sucking out build up fluid out with a syringe). The skin and area is very much numb still. Feels very much like this area isn't really part of my body. It just looks so foreign and without my 'softy' in looks very deformed. Just can't get used to it. It's so hard to get dressed now because everything hugs your body in a certain way and it's litrally impossible to make your boobs look the same. It's just so frustarting and lopsided. I cannot wait to have reconstruction done! *unknown time period still - sigh...

On a great note my surgeon is extremely happy with my progress. He thinks I have come so far and done so well in the meantime. When disecting my nodes they actually noticed that my nodes were clear of cancer. The chemo had killed it all off. I was thrilled to hear such news. The nodes were just fibrous from all the chemo toxins. Every time my doctor does some aspiration he sends the fluid away and everytime he is happy to report that the results come back clear showing that all the cancer is cut out and gone away. The thought makes me so happy. All we have to worry about now is getting through radiation as well as RFA treatment. Happy days - we can almost see a finish line!

hospital and recovery time

I got out of hospital this Monday. As supportive as all my loved ones and friends were for visiting me I started getting frustrated and sad with the whole situation. The doctor let me go home on the reason that he thought I would be better off at home with myself or my family emptying my own drains rather than the nurses doing it wrong every time. They broke one of them (woops).

The pain has been quite bad and I can't use my arm too much. They had quite a field day moving my muscles around. The op was actually pretty much complicated in the end actually - On doing administrations with one of the head nurses you had to write out to your knowledge what you thought the doctor would be doing so I wrote down 'Bi lateral mastectomy, node disection and taking out my port' On signing the note off the nurse said 'according to theatre you are having just your left side removed'. I was so frustrated on the news. According to my doctor I could only have the effected side removed due to the fact of my alien blood clots that had invaded my lungs. No1 had discussed this with me however. I was livered! On having to get used to the idea of having no breasts at all - I now had to look defromed and only have 1? really now??? I understood the terms in the end but wow - due to doctors being on holiday it wasn't discussed with me that I would have only one disected in the end. Not brilliant news at all in the slightest. I was wheeled off thankfully very calm with the help of premeds. Upon entering theatre and seeing all the equipment they were about to use just sent me off in a downward spiral - thankfully I was put to sleep very soon after.

On waking up I was suddenly very confused. I was shivering to such an extent my teeth were chattering and the nursing staff were telling my family and Nigel that they had to say their quick goodbyes so they could get me stabilized. I was in ICU. Great....The surgery was much longer than anticipated. What was supposed to be just 2 hours lasted 6 hours on the table. The doctor had struggled to take my nodes out beause of my muscles. My body had gone into a bit of shock and according to my nurse I was breathing a bit funny so they had to monitor me very closely for that evening. That night the pain was quite bad. Felt like I had been shot through my shoulder and my throat was so dry from the pipes that had been in my mouth and down my throat that all I could do was have ice chips given to me the whole night. By morning I was a bit better and I was given my first meal in a day. I felt a bit like a invalid to an extent because I had to have a nurse feed me because I couldn't move my arms or lift my body. It's terrible feeling so incompetent. Thankfully later that day I was put back into my ward - Thats when my sea of flowers, cards, phone calls, balloons and messages started. Wow - I have so many people who care. It's just too overwhelming...

I spent from Wednesday to Monday in hospital and my family and visitors kept me quite busy with visits the whole time. Was a good thing I suppose because it kept my mind busy instead of thinking of my amputated lady lump. When my guests wern't there I was sleeping, having my blood pressure checked or visiting my dear friend who was 2 doors up from my room who had been in a motor bike accident. Very convenient!

I learn a valuable lesson the first day being out of ICU. If a nurse asks you to say what your pain is on a scale of 1-10 do not answer 7-8. This may be a trick question. If you answer this you get a suppository and there is no changing your answer! If you answer 5 and below you don't get anything. 6 or 7 is a pill. 7-8 a suppository and 9-10 is an injection. Injections were only given to me at night when I was about to go to sleep. That was the best pain killer which lasted me quite a while - they gave me Pethadine. Aaaah how I miss it. 

Now that I am out of hospital I get silly pain pills that don't do much at all. I had to ask the doctor for something extra because my arm is still so sore. I still have my drain which I hope to loose today. Been carrying it around since the op and I am really getting tired of it now. I'm down to about 40ml every 12hrs which is apparently a good thing. Changing into day clothes has been a real hastle in the past few days. Every morning I have been struggling to find something to wear due to the fact that it looks ever so obvious that I am 1 boobed now. So eventually on finding something to wear on Wednesday I begged my mom if we couldn't find a solution somewhere to make me look more 'symetrical'. We found a shop called Storm in  A G cup which cater for bigger laddies and prosthesis fittings. I needed a prosthesis stat! Sadly they could not give me one because I still have drains and major swelling so we opted for the next best thing. A big old lady bra with no wiring and a insert called  a 'softy' to make me look 'normal'. In about 6 weeks I can get a prosthesis until I get my reconstruction done.

A week before my big day I had a photoshoot done. Something very out of character for me considering it was mostly without clothes on but I wanted to commemorate and document what I was about to go through. It seemed for some reason like a very big step for me - letting go almost. The photographer and myself have chosen to document before, during and after reconstruction. Should be quite interesting. Many people asked why I was having it done and my answer was to the extent of the fact that I can't go back on something like

a mastectomy and therefore wanted pics for various reasons. We may decide to use them for an exhibit, use them in a publication I have been pondering on or even just for my own.

 So thats it ladies and gentleman - next chapter closed and well...almost dusted... 

It's the Big Day

(I wrote this on my notes on my Blackberry on the day of my op 28th of Sep)


It's 6:30am and I can't go back to sleep. Today is the day of my mastectomy. I really and honestly
didn't think this day would ever get here. Now that it is here though you'd swear I was taking pills
to be calm or something. I worry throughout this that I'm just numb to it all instead of calm and I'll get rained on with all my self pitty when I least expect it. Yes - through this whole ordeal I occasionally have a melt down but shortly after I pull up my socks and look to the 'horizon'. I know how important it is to look at the main goal here - 2 be healthy.


I worry what I am going to look like with no more boobs. What was once seen as 'perfection' growing up in the opinions of old boyfriends and friends and the envied of all...is now being surgically removed. It all seems very surreal. It gets me down that I'm not immediately having reconstruction done but it's something I will have to get over. All very hard. I will have to do with the 'chicken fillet' inserts for a while. Sh*t - scares me how self conscious I am. No matter how much preparing I do I have no idea how well this is all going to go down.


I think I am going to climb back into bed now and snuggle up with my better half seen that it's going to be a while before I can do it again. As soon as I am out of hospital I will be at my moms recuperating for a while. My older brother is coming down for holiday and my mom is off so they can drive me around and take care of me while Nigel is at work.

Hard hitting realities

Still awaiting dates from doctors -

I however got a call from my plastic surgeon this morning. I don't know how I'm going to get through this but basically my plastic surgeon dosn't want to go ahead with the reconstruction part of my surgery. My doctors concerns are that the radiation treatment is going to ruin my new 'works of art' and do some strange things to my skin by completely changing the shape as well as making the surgery longer than 4 hrs long putting myself at danger for the cancer spreading. Studies basically show that if a patient is open on the table longer thean 4 hours the cancer is known to metastisze further.

It's come as such a big shock because all this time I have thought - 'it'll all be fine - I'll wake up with new boobs like nothing ever happend'. Not anymore....I'm really scared at the reality of it all. I know it's all for my good but since becoming a woman I was always told I had the best boobs around. I never saw them as perfect (a little 2 big for me) but they were one of the better features I have. Ok - that sounds terrible.

Some how I just have to convince myself that it's not permanent for long and that eventually down the line I will have new breasts. If I were much older I don't think this would be an emotional and mental issue. Just got to get my mind around it all and lean on everyone for support.

Bye Bye chemo!

I really am getting bad at updating my posts lately. Just so much been happening! Birthdays, events,moms chemo...it never ends.

I had my last chemo last Monday and yes...it is officially my last chemo I can say this time. So once again we close this chapter and move onto the next step. Dates still to be finalised with my team of doctors.

Yesterday I went for my CT scan to see where we were all going. Sadly - there was no more

shrinking but we did come across a sneaky new thing that has arisen. I now have newcomers

to my lungs (not cancer) but blood clots. My doc seems to think it's from my port so they are 

going to take that out when I have my mastectomy done. Nice news huh? came completely 

by surprise. I now have to inject myself every night in the stomach up until my op. Hopefully 

they will work their way out in the next few weeks but just have to keep our eyes out for it in

the meantime. Last night was my first time having to inject myself but Nigel stepped up to the

plate and said he wanted to do it for me. Bless his soul. We psyched ourselves up for ages and

youtubed (don't laugh - there was no nurse available at the chemist) how to inject yourself because we simply had no clue. Eventually we did it and we both lived to tell the story :-p wasn't so bad after all.

As nervous as I am still about having this major op I will be excited to have this over with. After my op  (about 4 weeks after) my doctor wants to send me for RFDA treatement which is basically sticking a probe in my side and 'microwaving' the spot while I'm under. My doctor seems to think I'll be fine for a while. Just have to have regular check ups to see if theres re occurence in my liver. Need to get into a nice fitness and eating regime and include all the necessary supplements. It's weird I'm excited for everything to put it behind me but yet I'm kind of scared because I know I'm going to be a hypocondriac thinking everything will be cancer related. How does 1 get through that?

While I was going through my last treatment last week - 2 days later my mother had her first. She seemed alright at first but 2 days later it knocked her for a 6. Achey bones, nausea, extreme headaches, dizzy spells and very low BP. Felt so bad for her because I didn't get it that bad. I am glad it's all out and this chemo for her is all precautionary but seems so brutal for something that isn't there. 

Our BreastBuddies Mad Hatters Tea was such a wonderful success. I think everyone had some fun. Thank you to all who helped out. We met lots of new wonderful people and made some great contacts to carry on spreading awareness.

my world has gone crazy

Feeling overwhelmed is a bit of a understatement at the moment - so much happening and going on!

 

My Last treatment has finally come and gone and I am feeling more human again (other than the immense tiredness as usual) - yay!

I felt a bit lost leaving the chemo room - it's quite a strange feeling. The nurses were saying how I was almost part of the furniture I had been there so long. The 1 thing I liked about getting chemo (and probably the only thing) had to be speaking to new and old patients. On my last session there was a middle aged lady who came in half way through my session who was incredibly emotional and kept crying - this was me just a year ago so I decided to talk to her. I gave her tips, told my story and at the end of it gave her some hope and positivity. She messaged me a few days later hoping to talk again as I had given her a good outlook on the whole situation and whenever she is to go through a tough time she will just think of my friendly smile. There is nothing more rewarding hearing that kind of thing. That 's why I enjoy working with Breast Buddies :)

So just 2 days after my ghastly chemo I was laying with the hideous after effects of chemo and marathon watching Greys Anatomy when I noticed some 'animal' looking hair that is continuously stuck on my face. Didn't think 2 much of it until I came to wash my hair - Oh M Geeeeeeeee I am loosing my hair again. Insert swear word here please. Seriously?? My last treatment and this glorious thing happens? I was considering sporting the 'pixie look' the following week. Meh – there goes that idea.

Ok - now let me just tell you that everything written above this line is now officially old - my life has taken another big giant U turn and things are still now dragging out. 

3 weeks ago (yes I know it's been very long since I last wrote) I visited my new plastic surgeon Dr. Hilde Meyer. She looked me over and scheduled me for the 27th of July for my double mastectomy. It became a bit of a reality slap right there and then. This whole entire process has an eventual end and I was almost there! It was so incredibly scary. Everything had been done in stages - I finished my chemo and now I'm about to have my lady bits lobbed off. I'd been excited to have everything cut out of me (being the cancer) but now this feeling was something entirely different. It was reality.

Next issue coming up would be my CT scan. I arrived there prompt and early meeting my mom and drinking that hideous liquid that 1 has to drink before the scan. It seems my veins have officially gone on strike because it took them about 35 mins to find a vein. Can you say human pin cushion? was really sore! Anyways - skipping to the results part. My breast lesions is now down to 1.9 (started off at about 3.3) and my liver lesions shrunk a fraction as well. I was happy - although a bit disappointed that it wasn't more. On my way to visiting a friend having chemo that day my doctors associate called me saying 'congrats on the scan however sorry - We want to delay your operation and push you just 2 more treatments because your liver mets shrunk a little bit’ (comparing to the last time where it didn't). Altho this is all good news I was a bit upset in some ways. Thought I had kicked the red devil away for quite some time. So now I start chemo again and my op is pushed aside till this hurdle is over (once again).

Onto further news - Last Friday was officially the worst day ever for 2011. Not only was our loyal family boxer dog 'Roxy' in the animal hospital for tearing a muscle in her leg and being in the utmost pain but at about 3pm I received the worlds worst phone call saying 'We're at the hospital - mom has been diagnosed with endometrial cancer'. Of all the people in the world - why does it have to be the most kind hearted people who ever walked across the face of the planet? She was scheduled for an emergency hysterectomy for Monday morning first thing. That whole weekend felt like an emotional blur - physically and emotionally I was done. Many people who were close to me were done. Cancer is an incredibly scary deal and it’s starting to scare the s*it out of my family.

Monday morning my mom was taken into hospital where her gynae explained the procedure to us. They would take her whole uterus out as well as the fat and glands that surrounded it. After hearing the news update that the doctor said he had taken everything out I felt a hell of a lot more better. All we had to do was wait on the pathology reports to hear how far it spread and then hear the outcome of everything ie treatment. We got the results back now but they don’t reveal 2 much other than the fact that she’s incredibly lucky. The cancer spread just to her uterus wall and no further.

It's incredibly weird how everything happened but she is ever so lucky. The story kind of goes like this. After my CT scan my mother went in to her weigh less class where she had heard a story of somebody who had been spotting for over 2 years and they didn't bother to check it out. Turns out they had a very rare form of cancer. My mom had been spotting for 2 months but not continuously – she had a pap smear just 2 months or so before and everything was in the clear. On hearing this story she went back to the doctor asking what was the reason for the spotting if she was in the clear? The doctor examined her only to find 1 big mess inside. Meraculously the doc called the gynae at Panorama for a further check up and to take some tests and she managed to get an immediate booking that had just been cancelled. Normally you wait 3 months for this kind of thing…On getting results back of course she got the big news and was rushed off for a CT scan.

It’s weird that we both sitting with this kind of thing now. Never heard of 2 family members having cancer at the same time. Sure – she’s off a lot better as she stands right now but can you imagine if she has to have chemo too? She’ll only be hearing about whether she will have treatment in about 4 weeks but luckily I have been scheduled in with her oncologist on Monday so I plan on poking and prodding her for answers :-p

Thank you to all the people who have shown their support in this last crappy week – it’s meant a lot to me and my family.

just 1 more

as much as thinking 'Just 1 more...' is so exciting I just wanna cringe at the thought of having 1 more. I don't know why but the more I have I just think....seriously - theres more? The mere thought makes you go green!

On the note of 1 more that brings a mere reality that it brings the 'big surgery' very close by. The doctor would like me to have my surgery 3 weeks after my last chemo. As excited as I am to have this primary 'b*itch of a cancer' cut out it's a bit of a reality slap thinking how close it all is. I need to meet up with a new plastic surgeon and discuss the various options of having new 'mounds' upon my chest. Here is hoping they do a 'tram flap' which is a bit of a complicated procedure by the looks of it but it's basically fat used from your stomach (yay!! stuipd chemo has caused me to put on quite a bit) as well as a muscle that is brought up from behind your back/ stomach area. I'll attach a picture below. Do yourself a favour and don't google image it - looks terrible and super sore!

We have moved into our new home - we're absoloutely loving the space. It's been so awesome and my body aches seem more 'happy'. I think the many stairs did no justice whatsover on my achey bones. It hurt just waking up in the morning and the 3 flights of stairs as well as a flight in our own flat took it's toll.

It seems like my lawyers seems to be coming to a bit of a decision in the malpractice issue. They struggling to come up with proof that the cancer grew a certain amount within the 5 months after being diagnosed officially (from seing the GP in the first place) so it looks like they making a demand for trauma, medical expenses etc etc. No figures but even thinking about it still makes me upset because at the end of the day no amount of money can make up for what has happend. If I saw this doctor again I think I'd have to have a army hold me back and my mouth sown shut. It makes me so upset that someones stuipid decissions could have such a toll on my life. I would have probably been over this, I probably would have been in stage 1, It wouldn't have spread and I could have had a very strong chance of a healthy life ahead of me with kids and all. Everything is questioned now and we'll never quite know so we just gotta have faith in God that all will be ok and he has a plan. 

None the less as sh*t as it all seems from time to time - I will never give up fighting the fight. Everything happens for a reason.