Cancer-versary

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.

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 news...my 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.

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!

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.

FML

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.

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.