Saturday, December 15, 2012

This and That

October has come and gone already and wow did it go by fast!

The events I attended and spoke at were pretty cool but the Red Cross Children's hospital was most definitely my favorite.

The day after chemo I felt as amped as can be, put my bandanna on and drove on down to the childrens hospital with a boot full of goodie bags and childrens books. Simple things such as bubbles and playdough made these kids smile from ear to ear. While I loved briefly hanging out with these kids it made me want to volunteer more in simple ways - my heart went out to them however. The kids and the parents. My diagnosis and 'money' situation seem so trivial compared to these familes. Some of these little patients have been here everyday for the last 6 - 8 months receiving treatment everyday. Most of these kids are from afar and their moms have not left their side since they had been there. The families don't get to go home due to money situations and they barely have more than a set of clothes to change into. If you are reading this and you live in the area (and are able to) please consider donating old clothes/ toiletries (like soap, deo and toothpaste) to the hospital. These families and children could really do with the help.

Once finished with the kids I went on home to my better half only to literally have my system crash on me. I had felt the worst of all during this cycle of treatment. It took me ages to get back to normal and I was so nauseous I didn't know what to do with myself - I was emotional as hell just because I felt so sorry for myself this time around.

A week or so later some friends, N and me had a mini week getaway. We spent some time at Mc Daddy's trailer park in the Elgin valley and 2 nights on a little holding in the mountains just off Villiersdorp. No cell phones, no pc's, tv or reception. It Was perfect.  Lots of time spent with everyone around a fire place, sleeping late, time to reflect, drinking some wine and having some good chatter among friends. Just what the doctor ordered!

A few days later N and myself went on another little fun road trip for my good friend (and cancer buddy/ fellow fighter) Helens Wedding. Her wedding was happening all in Maaitjiesfontein. A 1 road town about 3 1/2 hours away from CT. I don't think I have ever shed so many tears at a wedding. I felt so humbled to have to witness such a special day of 2 beautiful souls being married. I am so proud of how far she has come and to see love have no boundaries - even if 1 is diagnosed with cancer. The wedding was so beautiful and the guests were all so welcoming. People had come from far and wide across the world just to witness this beautiful day.  To put the cherry on this beautiful and emotional day I felt humbled simply because regardless of not really knowing anyone - everyone seemed to know about me and thanked me for fighting through this fight with Helen. My friend - if you are reading this...I am so grateful that our paths crossed and that we got to be such good friends. You have always inspired me and given me hope when I was down or shared some wise words with me along the way. I am so happy to be fighting this fight with you and I would not have it any other way. For a sneak peak at what this special day looked like you can check it out on *some advice - you may want to grab some tissues....*

Moving along a bit...I recently went for a PET scan. You remember the one I had before where they inject you with radioactive juices? After a pretty sleepless night I went to my doctors office to hear the results. I was a nervous wreck the entire day long. I think I just about tried to stay clear of everyone for the fear of biting everyone's head off. My poor N - sorry my love.... So anyways - my doctor was not too happy about the results. The report was a bit inconclusive. She could see my liver mets were down a bit and something was visible on my lung lining but that was about it. My doctor was not happy about this so sent me for a CT scan the next day.

I don't think I have mentioned to you all but my older (and only) brother will be getting married to his beautiful fiance, Irma. Due to the fact that they live in the UK we were asked to try scout out some venues for them. I had a few places booked to view that morning just before the scan. On visiting the first wine farm venue I tried to ignore this feeling I had in my side. It felt almost like I had a stich. All of a sudden while talking to the manager of this place, I felt a bit of a 'release' of this pang and all of a sudden my heart race was racing and I felt like I was going to pass out. Nobody noticed but as soon as we were left to ourselves I told my mom that I really was not feeling well all of a sudden. Things just got so strange. I took 10 steps and I would be out of breath. We fueled up with some (ever so healthy) Mc Donalds to try fuel some sugars up but I still felt odd. I went and had the scan and thought afterwards I would pop in at my doctors office and get one of the nurses to check my vitals. My blood pressure was up and my heart was racing! Because my doc was not available the nurse said she would make my doc aware of what was going on and if I was still feeling ill in the morning that I should go and get my blood pressure checked again and if it was still the same we would get it all sorted out.

An hour or so later just as I was relaxing on the couch when my doctor called me to say that the radiologist had called her to tell her I needed some urgent medical attention. I had blood clots again in my lungs! I was instructed to try sort out hospital admissions as soon as I could and get my rear end to hospital STAT. Once in hospital it was explained to me that I would most probably be put on Clexane injections and even wharfarin Blood thinners. Just when I thought I was getting all settled my doc took my pulse and had me admitted to ICU for the night. My heart was racing which caused some great concern for him. Can I just state the obvious here on how bad my luck is?

I was in hospital for 4 nights, 1 night being in the ICU. It felt silly to be there but as soon as I would get up and walk to the bathroom or something I was simply exhausted. Blood clots leave you very out of breath. It felt silly due to the fact that I was simply there for observation and to receive an injection in the morning and evening (which I could have done myself...). I got out on the Monday afternoon being instructed to be extremely careful and have plenty of rest. On having a final check up from my doctor I was told I had a bit of an infection in the lining of my lungs. My right lobe of my lung was terribly sore and I was coughing quite badly. 

After about a week I started to feel a bit more myself again. My energy was slightly returning and I could walk around my home without having to rest every 10 steps. I now have to go for weekly blood INR tests and pathcare sends me dosage amounts saying when I should take my wharfarin tablets. My levels have been up and down like a rollercoaster since getting out of hospiatl - I really hope it normalises soon

Wednesday, October 3, 2012

1 year anni of no 'leftie'

Can you believe that last week on the 26th of September was my 1 year anniversary for having my mastectomy? Do I miss it - yes indeed! however I don't miss the cancer that was in it. It has taken me a really long time to be comfortable with my 'situation' since a year ago but I must say the last year has flown by tremendously and what tears I shed for not being able to get my immediate reconstruction done is a thing of the past. Don't get me wrong - I still want to bribe my doctor so we can go ahead to get some 'silly boobies' (silicone boobs) put in but I am OK with knowing it'll be in the next stage or 2 instead. For now I'll still check that my prosthesis is in line with the real boob every 20 mins while in public but what's most important is to get rid of the 'c' in my liver.

I must say that I really am feeling good. I can feel I am really fatigued lately from all the treatment but maybe that's because I have been very much on the go lately with the magazine and fundraising events.

My magazine is officially out and I am so impressed with the first issue! I have received so many comments about how it turned out and I have even received feedback from some government hospitals thanking me. Nothing can warm your heart up better than that! I'm quite excited to dive into my December issue. For those of you who have not seen it - check it out! You can view the e-book at  the bottom of the page.

With October being Breast Cancer awareness month it's certainly one to be keeping me busy. On Friday night I will be shaving people hair at the shavathon/ sprayathon at the Sunningdale Market. I was quite surprised but I was also cordially invited by the CEO of Spar to be a guest at the Spar Ladies Breast Cancer awareness breakfast. It's promised to be a hell of a lot of spoiling which I am rather looking forward to! Sunday BreastBuddies is hosting a 'Icons of the 80's' show in honour of Pink Drive who do some amazing work in spreading awareness. Last but not least - next Friday on Bandana day my friend Sheryl aka Mrs Western Cape will be visiting the kids at Red Cross hospital for a morning of spoiling the kiddies, entertaining them with a clown and  taking them some goodie bags. I cannot wait! The cause feels so incredibly close to my heart (and always has been) but I often think 'if I feel like I have been hit by a bus from chemo and like I have a 5 day hangover of note then how the hell must a child feel?'. That cannot be easy and this is why we want to bring some smiles and a laugh or two to the kids who could probably need it most.

I'm holding fingers but next week should be my last chemo session - Can only hope we can move onto the next step into the future then!

Monday, September 10, 2012

4 down - 2 to go!

Past the halfway mark through this treatment at least - well I certainly hope. Last time my doc pushed me for more on the red devil. Lets just hope that this works for once and for all. I often wonder - how much can I really take here?

Before you all think 'don't give up' - it's not like that. I'd die fighting for anything and often like to prove people's just that sometimes I think jeez already...enough. It's not something you can help thinking with so many people around me being affected by cancer. Not everyone receives good news all the time with cancer. There is always the good and the bad...unfortunately lately I am hearing more bad from friends and family with cancer. It makes my blood boil at times because it just isn't fair.

My misdiagnosis case carries on - I got some good news from my lawyer the other day that there is a very good chance that the doctor who misdiagnosed me wants to settle. I have had to gather all my reports, scans, x-rays, salary slips etc for a further inspection so they can get to the bottom of this. It's been such a long process so far. I asked my lawyer the other day 'what happens with the doctor in the end?' - can you believe all that happens is their insurance goes up? I thought that was rather shocking - not even a rap on the knuckles?

Great news :) !! I was completely scared as hell at first because this new chemo gives me pains in the kidney/ abdominal area to such an extent that it made me stress the cancer had grown. Turns out that the new chemo is actually working and I had a 30% reduction in my lesion in the liver. Woot woot!!! The wait for my results that day was torture because I didn't know what the hell to expect. My poor mother knew my concern and even attempted to take me to breakfast as well as shopping to get my mind off of the situation. When we got to my oncologists office and she read out the report to me I almost sat waiting to hear something bad had appeared. When she looked up at me and I officially realised she was finished I was ecstatic. You have no idea what a relief it is to know that the chemo is working. 

My hair is growing nicely - this chemo has made it thin a little bit but it's still nice and thick on my head. It was getting to be a bit of an unimaginable length to work with until I figured I could pin my fringe back and even sport a mini ponytail :) The little things in life make you so happy I tell you! I found myself at Pick 'n Pay getting excited to buy some clips the other day. Everybody keeps telling me to get my hair trimmed at the hairdresser and it will grow faster that way, but every time I have visited the hair dresser they hack off a few months of growth. Think I will rather wait until it's a bit longer where I can have a proper style. For now am thrilled that I haven't lost it so far with this chemo *touches wood*

Our magazine will be hitting shelves soon - nervous but yet excited! Watch this space for a link to it!

Friday, June 15, 2012


Today, 2 years ago I was told the horrific news that changed my life. 'Your tumor tested to be Malignant - I am sorry. You have cancer...'. 

It has been a hell of a roller coaster of a ride at times but during these 2 years I have experienced so much, met some amazing people, taught me to fight like hell and live every day with gratitude, Wonder and Hope. It's bizarre to say but sometimes I still look at the crappy days I have and I think 'is this really happening? How am I still standing?'. Am much as the news settled and is a reality - it still feels like a dream at times.

I have had so much happen to me in the last few weeks. I apologize for my lack of updates but I have just been so busy and caught up with all the events and personal issues in my life I really have not had the time.

I start with the whole process of  getting things right with my medical aid. They managed to authorize my next chemo plan (hooray!) but they did not however allow me to have the pill form of one of my drugs (Vinorelbine) so now I have to go in for the drip on the 8th day after my initial chemo. It's ok - just a bit of  a mission. At the end of the day it is a bit silly however. If you think about it actually works out more expensive to have to go to the chemo ward for the assistance of the nurses / pay for needles and the meds. Really is a bit ludacris. 

So after getting all this authorized and wanting to start my new treatment (because I was in quite a bit of pain from the pain transfer) I got a call from the nurses asking if I still had my port in. This is something they removed when I had my mastectomy. Should have seen a problem on the horizon....They would not administor the Vinorelbine unless I had one put in again due to the drug burning your veins really badly. Charming thought aint that? Operation 'Get a port as quick as possible' started and I immediately got on the phone with my surgeon who made an urgent after hours appointment to see me so we could have it put in as quick as possible. I had him consult me (bless his soul) and managed to shuffle his diary around and cancel some appointments so he could insert the port in on the next Tuesday. Didn't expect that to be so easy! I have the worlds best surgeon. He is the one that broke the news of my cancer to me in the first place so I wasn't too fond of him in the first place....but over our consultations and ops I have certainly grown very fond of him. He is almost a retired man coming up to his 70's, he knows all about my family, is old school as hell - does not even own a pc in his office but best of all that I really appreciate about him - is he has all the time in the world for his patients and he goes the extra few miles for his patients. He talks the hind leg off a donkey but the fact that he will walk to the end of the earth for you gives any doctor 10 thumbs up. That's a quality hard to find!

Tuesday came. I had to be booked in at Milnerton Hospital in the afternoon for the port insertion. It's not a very long procedure however it can be very complex. They have to find a good artery to work with (that's really hard to find considering my veins are completely buggered from chemo). From there they follow that artery into the heart valve - thread a few devices through the artery making very sure not to nik anything in the process. A tiny cut somewhere can take hours to mend and involve you having unwanted drains and lung damage. They then have to place the port in such a position where it may not move whatsoever. After all that is done they flush it all out to prevent clogging and clotting. I have heard so many horror stories that involve ports dislodging and getting tangled up in the lungs and ribs. Scary with the stuff that can go wrong.

It's a good thing I have the port now because I have never seen anyone so stressed as my aneathatist that day. Due to my veins being totally botched up there is normally quite the struggle to find a vein. Now you know it's bad when an aneathatist paces up and down the theater all stressed out because he can't find anything. I was prodded, tied up with bands, slapped like a druggie would do to themselves and generally made very stressed. All this hurt like hell because he tried several times going in blindly - he then looked at me after pacing up and down again and threatened to use my toes. 'Oh no you don't! Mr. I suggest you find something in my arm and in my arm only' I said - the mere thought made my stomach turn! I think he saw how serious I was then he gave it another try. He ended up finding a teeeeeny vein with a pediatric needle. Thank heavens because I think you would have needed at least 5 people to hold me down if they dared to try my veins. So once the drugs were running I always try fight the sleep as best as possible and I check the theater staff working like busy bees. As this is all going on and feeling very high I get told - 'could you possibly sit up please. The ECG monitor is not hooked up to you properly' - 'Are you for real here!? - you have just drugged me and I'm about to go to sleep' *drugged up half asleep slur tone. They managed to push me up with me wobbling a bit around (very close to falling off) and soon after I woke up with the op finished and complete.   

I started chemo the next week allowing me to have some recovery/ healing time. The new chemo is definitely no walk in the park. I was given only a small dose and was left horribly nauseous not knowing what to do with myself. Day 3 I thought I was alright so I was very excited to go to my friends 30th. An hour before I felt terrible. I was a white sheet and quite ill. My blood levels were horribly low and I almost feinted several times. So much for going out. A week later I was still quite bad having plenty of rest and dizzy spells. My doctor has prescribed me plenty of magnesium to make it better. I have recently started getting some ringing in my ears as well. At random intervals I experience ringing known as tinnitus. It's quite annoying and makes me feel a little bit crazy at times - hope it's not to stay (can become permanent).

With all this going on I have been trying to get the ball rolling with the magazine. It's lots of hard work but with dedication we'll make it succeed.

A friend of mine told my story to a client of hers who wanted to offer me some special alternative treatment to help me with healing. I thought of everything as very arb at first but decided to take this lovely man up on his offer in wanting to sponsor me. You never know!? He knew this man that is retired and worked as a professor at Stellenbosch university. This man - Mr Haye believes in the power of healing through the magnetic fields in your body. He has various methods using magnets. He uses salts to neutralize your body acids, magnets to realign your body up and doing various things to oxygenate your body. All good things really and things that could certainly not harm you in any way. He showed us various ways (Helen came with me to observe) to oxygenate  your system (because oxygen kills off cancer of course). The one way is to put peppermint aromatherapy oil on your hands. Just rub a drop in - breathe it in on your hands and exhale while bent  almost putting your head between your knees. You do this about 5 times. Another way is using a coke bottle with a drop of peppermint oil again in water (about 1/3 of a coke bottle filled). There is a long straw like contraption in the bottle and what you do is you blow bubbles exhaling and then you breathe the air through the straw - picking the straw out of the water. You breathing in pure oxygenated air and it completely clears up your breathing tracts. On showing this contraption to us and how to use it I could not help but crack up laughing. On taking a rest I looked up to see the others doing it and I packed out laughing because all your heard was *bubble bubble bubble* - the sound of a hubbly/ bong. It looked like we were hitting a bong together with this old man!. It was so hard to be serious doing this. I learnt a hell of a lot from this man however - simply too much to write at this point. We were shown many experiments on how to test negative magnetic fields etc.

Must be off - thanks for the follows.

Monday, May 21, 2012

the 'not so positive' post

It's been a hectic rollercoaster ride for the last 2 weeks. Sometimes I think God just needs to give me a bigger plate for all the stuff I put up with - either that or apparently I am Super Woman...some nicer powers besides emotional strength, hope and positivity Would be nice – just saying…

This blog begins off with me telling you about my mom. She had been suffering some pain in the liver/ Gall bladder area. She left it until she went up for her follow up check at the doctor 2 days later. On telling her oncologist that she had this pain she was told to go for a CT scan. While at work she messaged me that she was waiting for results and she had to go to the doctor. Something had been found - I could hear by the tone of her voice that this was not good. I rushed home just thinking the whole way - if this is cancer rearing it's ugly friggen head again then I think I am just going to throw in the towel because I simply cannot do this anymore... enough is enough! 2 days passed by and we got the proper results - thank Lord they were just 2 very large cysts caused from her radiation therapy. Cancer and cysts actually look very much the same. The doctors were extremely concerned due to the positioning of the cysts. They were situated in the area of lymph glands where she was operated on. If that were  cancer it could easily have gone through those glands and into her blood stream and spread elsewhere. Thank heavens she is alright tho. It felt like the biggest weight had been taken off my shoulders.

Moving onto more negative dear friend Helen who I always talk so highly about got some disturbing news too. She had told me that she had been having terrible migrane attacks. She Told her trial doctors and they agreed to monitor it for a week then they would send her for a MRI scan. The migranes persisted and we all started to get worried. She had the MRI and sadley the cancer had spread to her brain. 2 buggers were found situated ontop of her cranium and 1 smaller 1 near her brainstem. Now I have known Helen from the start of her diagnosis and never have I ever met a stronger person and I am so honoured to know her and call her my friend/ cancer buddy because all we do is motivate each other to kick cancers butt!She has an amazing fiance at her side and her mom has flown down from Germany. Helen my buddy – you can do it and I wish you well through all this crap. With Helens news it really got me thinking though – cancer is complete b*tch and I wish it on no one. Helen is also the healthiest person I know – she takes her dog every day for a long walk in the vineyards, goes for runs and cycle rides, eats healthy as hell…Helen – you make me look bad!! It’s tough to put up such a fight and see cancer spreading.

Ok – so I don’t like to post bad things on my blog because I want it to be something positive to Uplift and inspire people but I got some bad news too. Almost 2 weeks back I woke up with extreme Chest pain – I called my doctors and they said it was probably a reflux attack and just to take Some Gaviscon. That evening the pain still was not away – I messaged my doctor and because Of my previous blood clots she instructed me to go to the Emergency Room to be checked over Immediately! After being prodded, poked, x-rayed, ECG’d and injected with pain cocktails they Simply put it down to inflammation and gave me pain meds. The pain was eased a bit but Still bad so my doctor instructed to see me – examined me and sent me for a CT scan. My problem Was either a cracked rib or alternatively transferred pain from my liver (your liver and shoulder area At the first rib share the same sensory nerves). Unfortunately my scan revealed that my chemo had not Worked and my liver lesion was almost double in size. [insert swear word here once again]. As I sat there In absolute shock I started to panic – what happens when I run out of options? My doctor – the amazing Lady she is immediately cracked down to making a plan of action. Choices – A) Red Devil combined with Something else and Cistaplin – also known as the ‘penicillin of chemo’s’ combined with a drug called Nevalbine. At first thought she wanted me to go back onto the Red Devil to where I said ‘will I loose my Hair all over again?’ ‘please cover the bag – the sight of it makes me ill’, ‘I’ll do whatever you want me to’ And then I raised some concern with her ‘I’m 2 worried that I start resisting again like last time… - do we really have to Go down this road again?’. Don’t get me wrong – I’ll ask how high when she says jump but this was Just a concern for me which made her think further…The end result plan was to put me on Cistaplin. ‘You won’t like me very much’ she told me but of course I told her ‘lay it on and bring it’. I don’t care How crap I may feel (Ok that’s a bit of a lie) but I just want to be rid of this and kick it to the curb.  I hope And pray that all will be good and this chemo is going to get rid of the alien cells in my body….for good! It may sound as cheesy as hell but as I told Helen – Cancer has messed with the wrong girls – the boxing Gloves are on!! Ding Ding…game on!

I may start chemo this week or the next – depending on my ‘glorious’ medical aid. I want to stat it ASAP But at the same time I’m not looking forward to the expected nausea. Apparently this chemo is a bit worse Than the bastard, Red Devil. I Will just have to take it all a day at a time and concentrate on greater things To come.

Next Thursday should be my last day at RE/MAX. I Cannot wait until I venture off working on my magazine. It’s so exciting and Nicky and myself are itching to officially get this off the ground. All our ground work Is out so far and our websites/ forum are all getting there.

To the ‘REMAXIDIANS’ Who keep up to date with my blog – thank you for all the amazing support you have Always shown me.

Thursday, April 12, 2012

Exciting New Projects Up Ahead

Not too much has happened in the last month with regards to my health. Maybe that's a good thing ;-)

The effects of my chemo tablets haven't been too horrendous. In my 3rd week/ rest week of not taking tablets I was quite weak and nauseous with a low blood count but nothing as bad as the Red Devil. Thank heavens!

So - with my last blog post I had some exciting news brewing. Drum roll please.....

I am going to be starting a magazine together with My Choice Publishing and our first Issue will be out in August. I am so ecstatic with this new project. A little about the magazine - It's Cancer related of course and it's specifically made up for patients in this 'journey' we all have in common. It'll be a free A5 magazine available at all oncology units, government hospitals and cancer related doctors. It'll be filled up with inspirational stories, tips, advice, doctors columns and details of advertisers to aid a patients life a bit 'better' for example: contacts for wigs and prosthesis's, healthy meals that can be delivered to your home if you're not feeling well enough, nutrition supplements...The list is quite long but I think you get the idea. We are hoping that some big corporate groups will be supporting this venture to make it the Ultimate success. There is nothing out there like it and this magazine is not only for breast cancer. We don't want to discriminate...this is for all kinds of cancer because at the end of the day we are all fighting the same fight.

All this was thought of by me when I was on leave. I originally thought up a website idea and a few days later I thought no way - we need a magazine that' s free and distributed within western cape. Now I have many ideas all the time but this one just felt so, soooo right. I immediately contacted Nicky from My Choice Publishing who I have known personally for a while and she absolutely LOVED the idea and offered to help me with this new 'vision'. Throughout my own journey I have always enjoyed helping people with the same dreaded disease whether it be through means of support or giving them handy contacts or tips. This is my new proud project and I am already so proud of what is to come. Wish me luck!

Thursday, March 22, 2012

New Meds

I have had amazing past week with family. My brother and his girlfriend were down from UK as well as some of my cousins. We had some great family time together; went to Hermanus for 2 days, did Wine tasting, went to Spier, Loads of braaing, Celebrated my moms bday, went dune bugging. Was really amazing and a nice rest away from all the drama.

On coming back from Hermanus the chemo centre had called asking me to come in the next day
to start my chemo meds. Xeloda had been miraculously approved on
my medical aid, however I am now without a receptor blocker because that was just too expensive to authorise. Always something I Suppose!

We had to speak to the doctor just so he could explain the meds. 8 tablets to be taken a day (4 in the morning and 4 in the evening). Will most probably experience some nausea, low blood counts, upset stomach, hand and foot syndrome which is pins and needles sensation on the hand and feet and it gets very sensitive and sore, red and sometimes cracks and peels.The things are manageable and you have meds/ creams to counteract it but it depends on the severity of it all.

As I was talking to the chemo nurses while they explained everything to me in the chemo room I happened to see a patient receiving Red Devil Chemo. Instantly I became really nauseous and literally had to turn around with my back to everyone so I would not see it. It's amazing how much your brain associates the meds to nausea and you feel instantly ill. It took me about an hour to feel normal again after leaving the chemo room. I completely dislike red now and lucky me our house is red themed. Feel sick just writing about it. Bleaugh.

So now I have been on the meds for going onto 2 weeks now. Not feeling 2 much except for sore bones once again. I feel like I'm a 90 year old woman with the aches and pains. The nurses still seem to think it's the Zometa Bone juice. They holding off it for a while just because it caused so much pain the last time. I'll be getting those sessions every 2 months instead just so my body does not take on too much strain.

Have some business plans brewing at the moment so watch this space ;) As shitty as being diagnosed with the Big C it has inspired me to do a few things.

Monday, March 5, 2012


Scrap the previous post that I did earlier today - it appears that I am not allowed to be on the trial because I have had a second line of treatment (being my red devil chemo).

My trial doctor is fighting it out with the German company that is performing the trials. Seems to be a hectic disagreement lost in translation from both parties.

Right now I am {insert swear word here and here and here and here} M.A.D. Universe - cut me some freaking slack will you!?!

Trials and Tribulations

So since my last blog posting it seems as if the whole world has passed by in a complete blur.

I have been caught up with just so much and had so many hassles with medical aid it's been unbelievably frustrating. Medical aids are really stressful to deal with - especially mine it seems.

My doctor gave me 2 options originally:

1. To take part in the trial which is testing a drug called Navelbine or,
2. Go privately and have Xeloda & a drug called Tykerb.

My decision making process was quite easy. The Trials department pay so much attention to what's going on in your body and they observe you on a weekly basis. This is the kind of care anyone could really ask for at the end of the day - besides. It's free! No more niggling and fighting with medical aids for authorisation of scans. Regardless though my Oncologist tried to authorise my other option just in case I didn't qualify for the trial. Surprise - they would not authorize it so option 1 it was!

I am still in the screening process but I will most probably start the new chemo in close on 2 weeks. It sounds like  a bit of an 'easier' chemo but as experienced throughout my journey we all know I am 'special' and the crappy stuff normally happens to me... for example:

Last Thursday I was scheduled to have some Bone Juice (medical name: Zometa) administered through a drip. Now - I was told before that this drug didn't really have symptoms for this  Bone Juice. Only a few handful of people really feel joint pain similar to the feeling of having flu. Was I one of the poor 'handful' of people to get this symptom? You guessed it - Lucky ol me. Having flu like symtoms was putting it very mildly. Day 1...sure. Call it flu - day 2 got worse and really uncomfortable. I had pains that felt almost like strong growing pains. Day 3- extreme pain. 1 minute I was watching the grammys - the next minute my better half found me collapsed in a bundle with my butt in the air on the bed crying in pain. Now I had been taking myprodols like they were smarties for those few days and they didn't do much except for take some of the edge off. I managed to call the doctor on call *stiffling through tears might I add* and she prescribed something else to try help. If that didn't help I would have been admitted into hospital. Thankfully by the next day the pain was about 80% gone and I was back to my normal self.

Unfortunately now with trials there is a law in the agreement contract that should you be of 'child bearing abilities' that you have to use a double contraceptive method. My options were a diaphragm and condoms or have the IUD copper T inserted into my 'lady nether regions'. Now - my options were quite limited because believe it or not we don't have diaphragms in SA so IUD it was. Until I have this done trial will not even touch me with treatment. Sounds harsh but makes sense with chemo being extremely dangerous to a fetus or infant.

I will have my various scans administered this week so they can measure out my leisons before they begin. This is how they keep track of your progress. 

Excitement amounts at the moment. My brother will be coming down in a few days to do the Argus cycle tour and visit good ol home. It's always great to have the family together. Hopefully I will get a few days off with him before he goes back.

Speaking of the Argus cycle tour. My good friend Helen who I call my cancer twin (sounds harsh but we have the exact same diagnosis and going through the same tribulations) will be doing the Argus with her fiance and they will be raising funds for BreastBuddies and the Pink Drive. I am so proud of her and how strong willed she is. Unfortunately my body is not as 'fit' as her but I hope to be doing the 110km race with her in the future. Good luck my warrior friend!

If anybody would like to help her raise funds for the cause give me a shout. For those of you who want to join the cheering in this race...The entire area of Hout Bay will be 'turned pink' for the big climb up Chapmans or as the Pink Drive are calling it 'The Climb for Cancer'. It's going to be a lot of fun if you're thinking of watching the race.

Friday, February 3, 2012

Here we go again...

Yesterday was quite a long day for me. I went through to my moms where we made our way to the PET scan centre. After much waiting and seing people be called up but not to return it was my turn.I was ushered through to a recovery room where I waitied for my radioactive drip. Struggling to find a vein as per usual the doctor eventually found a vein in my wrist. It all made me think really - This radioactive drip...would I gain super spidy powers so I could climb walls and make webs apear from my fingertips? Would I glow in the dark?? Alas - nothing quite as exciting. The injection of the actual radioactive juice was plugged into my drip via 1 hell of a contraption - it looked like something you would find on a workshop table in a garage. Confused, I looked at the doctor and asked 'whats the need for the contraption?'. 'I can't touch it, I deal with so much of this on a daily basis that it's a bit too dangerous'. Ermmmm - and you're injecting that into me? Gee thanks!

After waiting about a hour and  a half it was my turn next - I climbed on up to the machine and was told it would take 20 minutes of going in and out scanning my entire body. My nerves were shot until this point. Everything from here and out I was leaving in the big man aboves hands. 

The results would be ready by the time I went to my oncologist.

Woke up this morning with a really nervous stomach - please, please may this go right for me for once. It would be so nice to know I was in remission.

Alas, on sitting down with my mom and my doctor she revealed results that I did in actual fact have cancer in my liver again and a really small leison in my groin area that she was not too worried about. I'm not sure how but I managed to keep my calm and discuss how we were going to get through this. There were a few options but it looks like I may go on trial again for chemo. At the moment I'm still quite frustrated with life. Take a few steps forward - take a few steps back. It's just so f*&%ng irritating. When will this be done with already?

I will fight it and never give up of course - just my day of frustrations and venting. Warning - not good company at the moment and may bite anyones head off at any given time.

Will update everyone once I have talked things over with the trials team sometime next week. There are a few options with chemo so we shall have to see.

Friday, January 27, 2012

Just come back from an amazing cruise this week. We managed to get a good deal on Groupon for the 2 of us and left Thursday night from CT to Durban for 3 nights. Wish I were still on it! It was so amazing just having some time to relax, no phone signal, lay out on the sun deck, spending time with my hunni and friends, to be waited on hand and foot and having the occasional swim. The coolest thing of the trip was celebrating my finishing of treatment - Yaaaay! We spent a day in Durban as well at Ushaka Marine World and stayed in a nice Hotel on the beach. Was a short 3 day off work holiday. Hopefully I can take a few more days off when my brother is down in March. Can't wait to see him!

On The Thursday of our departure day I said goodbye to my last radiation session. 45 sessions overall were done. My skin was not too happy with me I must say. Over Christmas period my skin got a bit of a break. My neck area looked terrible with skin peeling and how red it was. Skin is still healing from my last few sessions. The skin almost looks a bit dirty from the radiation. Still peeling a bit but it will get better.

My radiation nurse saw my skin on the last session and told me I should not wear a bra. I looked at her with complete disbelief. 'Where do you expect my prosthesis to go if I don't have a bra?'. 'Don't wear it, you should not have a bra on because it will irritate your skin even more'. 'Errrrrm - do you know how lopsided I will look?'. "It's ok, it's not forever' she says. My reply was 'Do you know what it's like to be so young and have 1 boob only that you look like a deformed freak? Do you really expect me to walk out in public and work like that?, do you have any idea how many stares you get? Walking out my house without a prosthesis is not an option my dear!' Really now...I like to feel normal as possible and not like a 1 boobed freak thank you very much. I have gotten used to it but looking at your mutated chest is not a pretty thing.

After a lot of struggle with the medical aid I finally got authorised for my PET scan. After doing some questioning with some old trial nurses I bumped into they told me that the technology down here is quite more advanced than what they have in Joburg and Pretoria hence being cheaper and more likely be authorised. They managed to negotiate a rate of R10 000 instead of R18 000 and I would not have to pay in a cent. What a relief. Helps to complain and speak to people higher at Discovery I guess. Don't ever throw in the towel when it comes to medical aid. May that be my advice to any of you!

On Board The MSC Melody with my <3

I am really nervous just thinking about having the scan. It'll be on the 1rst of Feb and the reason of course would be to see if anything has grown at all and what really is in my liver now. On the sonar scan there was a shadow of some sort left over but it did not appear to be cancer according to the doctors. It'll take a day to reveal the results - most probably the longest day of my life!. Just so nervous about it because I worry something is growing. I know I always will in any case but there's always that little thing that plays on the back of your mind saying what if? The writer, Lisa Lynch who inspired me to start blogging after her fight with breast cancer recently revealed that she now has cancer that spread to her brain and bones. I read her blog now and still as amazing as she writes it's sad to see her not really have a fighting chance left. It's scarey and I felt like a bus had hit me when I read the news - she was my inspiration to kick cancer up the ass and change my whole attitude. I will remain positive as hell and people seem to think - you're over it. Live your life and be happy - stop stressing. You never do though and it seems as if it's only a cancer survivor/ fighter who understands that.

Please keep me in your thoughts on the 1rst of Feb - will keep positive and hope that I have the Big Man above looking out for me.

Wednesday, January 11, 2012

I had to giggle at myself driving the other day. I was getting ready for work the other day and on my way 2 blocks down the road I look down and notice I'm ever so lopsided on my chest. I forgot my fake boob at home. This was something I simply had to go back home and fetch - my 'deformed' form would never go un noticed!

Theres moments like this and onces where I loose it in my house because if it's too hot I just whip it out and throw it somewhere. Then, just as I am about to go out I'm frantically looking for it. The thought came across to many girls I know growing up and saying 'If only books were detachable' - naaaaah. No thanks. Here - have this one!

With this hot weather it's a bit torturous at times. It's either so hot to have the prosthesis is/ not being able to wear low cut tops & dresses outside of home and not being able to wear a swimsuit so I can take a dip in a a friends pool. Think I might invest in a surfers rash top so I can maybe go to the beach or swim at my moms place if I have the need.

With the new year upon us it made me think quite a bit about what I want out of this year - something has gotta change and fast. I see this year as a fresh start where my 'clock' goes back to the beginning and I can make some change for the months ahead. I may be freakishly unfit but that's got to change - I started doing a bit of walking to get slowly fit. I'm eating a bit better and trying to make changes in my life for the good.

In a conversation the other day with my better half we were talking about the last year and a half we have been through. It's been bladey rough for us and now we're just trying to look forward and hope for the best. The thing is - it's better said than done. It's not so easy to 'undefine' yourself
because now I have the challenge of staying cancer free, I want to write my book and we're going to have to get through this lawsuit as well. It's not something you can just transform from - it's a very long process and what I have been through has defined who I am majorly now. It's quite strange.

I'm sitting with the frustrations at the moment with my Medical Aid - nothing in the world makes me as stressed out as them. My doctor wanted me to have a PET scan done in this month 
so we can define what my treatment plan will be. Discovery calls me yesterday and says 'sorry, your application got declined because there is nobody in the western cape who can carry out this scan on the network.' Uh hem - excuse me? What would I have to do in order to get one? ' Well - you would have to live in Pretoria or Joburg'. I beg your parden? How is it that Nobody in CT has ever needed to have a PET scan done here? Regardless of things I called my broker up 
to sort it all out - my nerves are shot every time I speak to them.  I feel like I am dealing with  complete bafoons. Not a chance I can afford about R20 000 for a scan!