On being mindful…

A few weeks ago I had a conversation with someone I had only recently met. We spoke for a very long time about a great deal of things, and then we got to travel and holidays. 3 days later we had plane tickets and an itinerary in our inboxes.

 

My friend Claudia gave me the, ‘who is this person and how can we be sure he won’t kidnap you’ speech but it didn’t stop me going through with it. (Okay, to be fair, Said Person is the cousin of another good friend- and she would personally murder him if I had to go missing, so- I was safe).

 

Mafia Island, off the coast of Tanzania was our destination. A Resort named Pole Pole (which means slowly slowly in Swahili) sounded like the kind of place that relaxation and happiness would be found. I think I just had no idea just how MUCH relaxation and happiness I would find there.

 

Two days before our trip I visited my psychiatrist, Kim. We spoke of general topics like chemo and alternative treatments, you know – as you do. And then she gave me some of the best advice she has ever given me… she said that while I lie on the beach, if anything cancer related pops into my head – be mindful. By mindful, she means be in the moment, smell, really smell the air, feel the sun on my skin, listen to all the sounds around me- the water, the birds, the wind. Be in the moment. Be grateful for the moment and be happy in the moment.

 

I know I have written about stuff like this in my last blogs – but to be honest I am also only human and I think I needed someone to tell ME to be here.

 

I can honestly tell you that those two little words, ‘be mindful’ made the world of difference on our trip. To a certain degree we are both naturally happy and carefree people, and together we seem to be even more happy and carefree, but there were definitely times when one of us would think of things back at home, like work, and in that instant you feel the pressure of reality back on your shoulders. As soon as one of us left the island even for a second, we would remind each other to ‘be mindful’ and in an instant it was like putting a filter on an Instagram photo- everything got instantly better. I thought of my treatments once or twice, and as I was snapped back to the present moment I was so aware of how beautiful the setting that I was in actually was. How peaceful it felt. How holiday-like it was to be sipping a Pina Colada and looking out at palm trees. How easily this person made me smile and how really, really happy I felt inside.

 

I have been to amazing places in my time, but I have never been as present and in the moment as I was on this trip – and I can, without doubt, say that it was the best holiday of my life. How can an island holiday be bad in the first place, you may ask? Well, small things that would usually annoy some people- we didn’t let them annoy us or change our moods, we just appreciated all of it. It was windy on some days, we didn’t care. It rained once or twice, oh well. In fact it poured on us for 30 minutes while we were on a boat with just our swimming costumes and a towel for protection- drenched and freezing with 5 hours left of the trip, we just looked at each other and had a laugh. Happiness is a choice. It really is. It is not easy all of the time, but nothing is. I promise you though, next time something goes wrong or you stub your toe- don’t let it ruin your day, accept it and get on with being happy.

 

We all know the stories and the theories that stress has a strong link to Cancer. And it is with this in mind that my next alternative treatment plan comes into play. If stress can cause cancer, then I plan to beat it with its own worst enemy. Happiness.

 

Don’t laugh. If the negative can cause something, why can’t the positive fix it?

 

At work the other day, and after 4 days of struggling with my chemo side effects and really not feeling too great, I went to work and was met by a comment from a colleague along the lines of, ‘You look fantastic,’ to which I replied with a smile, ‘I’m trying a new thing, it’s called happiness’. She replied, ‘This Happy thing – it’s working for you!’. It made me smile.

 

On our time on Mafia Island we took a day trip to Chole Island, 2km wide and with a population of 800 people it took us an hour or two to navigate our way from and back to the bar… while walking, the man leading the tour looked at Mark and I as we took photos and laughed between ourselves at random things, and in his broken second language English he described us as being ‘Severely Happy’.

 

I have tumours in my chest, I am running out of veins on my arms, the chemotherapy that has been shrinking the cancer has now finished, I have no idea what is next in store for me… but do you know what? I have never been happier. Nothing is guaranteed in this life, it is a scary thought I know – trust me. But when you make peace with that and you make it your mission to appreciate what you have and that you are here, to not sweat the small stuff and not worry too much about the stuff that you can’t control – like the future, then being happy or being sad become your choices.

 

Be mindful… choose to be happy. And if you can – be severely happy x

on living now, and not then or when…

lightness

It’s one of those cliché lines that people mention in conversation and paste on their Facebook status’s – but it is one of the hardest thing to really do. It’s hard for several reasons. 1) we like to dream 2) we are consumed with our careers and work 3) we have forgotten just how incredible lucky and blessed we actually are. Well, that is what I would put it down to atleast…

 

I remember having a conversation with my aunt, years ago, about living in the now and how do you balance actual life and living in the now with things like planning for retirement or a new car in 2 years’ time. I don’t think it is wrong to plan for a future, and I seem to remember her giving the same advice, you can plan for the future and have an idea of where you want to be or go, but don’t put so much into the future and where you want to be in ten years’ time, that you put your current life – the now- on hold. I am one of those crazy people that believes quite strongly in synchronicity and serendipity. For those reasons I have always struggled with having a 5 or 10 year plan ; I like to be able to go with the wind, to a certain extent- and I think I have always been quite good at jumping into the wind – often to the horror of my friends, as they can quite recently attest to I am sure.

 

So we like to dream – dream away! But if one day, happiness shows up on your doorstep in the form of someone you didn’t plan on meeting at that point in your life, or perhaps you get a phone call with a job offer in an area you were not looking for. There are two things you can do. One would be to dig your heals in and say ‘screw you signs’ I have a plan that will make me happy when I achieve it. Or you could say ‘this makes me happy, now, now is real’ and who knows what will happen in the next weeks, months or years- you have no guarantee on health, happiness, wealth or anything really. But now, right now- my best advice (within reason) is that if something makes you happy – stick with it. God forbid you have a good time and enjoy your days here on earth. Imagine going home and not complaining about your job because you jumped into the wind and are enjoying 8 hours of your day for the first time in years. Imagine.

 

That kind of flows onto my second reason as to why we struggle to live in the now, the fact that we are so consumed with our careers. I live in Johannesburg – here, majority of people are driven by their careers; how much they earn, what car they drive, what neighbourhood they live in, which private school they came from- it all revolves around money, money that comes from having a good job. Jobs are strange things. I have been lucky and have always done what I loved- and I can honestly say that. But the thing with work is that you are always thinking in the future… I know in my line of business I am. A year ago I was planning what new role in the business I wanted. So much so that I think I practically checked out of my actual job- it is easy to do. Not ideal- but easy. In my industry we go from launch to launch, we plan our year in month one. I used to run my life around launches and work schedules – making sure that no holidays coincided, I remember being asked if I would consider changing roles, and based on what was launching 2 years (TWO YEARS) down the line, I said no. The irony is, that two years later is currently now, and I am not involved in the launch after all. Looking back, I should have done what would have made me happy at that time, instead I worried so much about my career I put my happiness on the backburner. Luckily this is an easy example because the comparison is such that I could have worked with Lindt milk chocolate, but I am now having to work with Lindt white chocolate. So, I got lucky- but I can still see where I missed a few signs along the way.

 

Careers are important, work is important- it got me out of bed and into the real world more often than I would like to admit. But I also recognise now, that working until midnight, missing friends parties, traveling over important times and stressing about what car I drive – means so very little when it comes to what is important. And what is important? Well, for everyone it must be different- perhaps you have children that you don’t see because they are asleep by the time you get home. Trust me- this much I know- if you never went back to work, they would probably replace you within 30 days. If you never went back home – your kids would never be able to replace you. It’s something I have seen first hand- I disappeared for 6 months ; work continued without me; I wasn’t replaced, but my teammates juggled my tasks and life continued. It was a humbling experience. It is why now, if I want to take a vacation… hell, if I want to take TWO vacations within a one month timeframe- I will, in fact – I am – because being happy and being here now is what matters. Me going away during a low peak time at work, where nothing will be compromised in my absence – is OKAY. You get XX amount of leave days in a year for a reason. You don’t get paid double if you don’t take them.

 

Do what you love and love what you do – but don’t put your work in front of your family and what makes your heart happy. If you died tomorrow with 40 days of leave unaccounted for, R2million in your bank account and 1000 LinkedIn contacts – you won’t be able to do anything with any of it. But in those 20 seconds when your life flashes before your eyes – you don’t want it to be images of canteens and meeting rooms, you want it to be of happy memories and beautiful places, delicious food and moments filled with love and laughter. Well, I do at least. So just balance it out. Live in the now.

 

My third reason as to why people struggle to live in the now, is because I feel that people have forgotten how lucky and how blessed they actually are. It seems like everyone struggles to be happy with what they have- they always want what is on the other side of the fence. Come at sit in the Oncology waiting room- even I have sat there being grateful for what I have because someone has it worse than me. If you have someone in your life, hell – if you don’t have someone in your life, if you have good friends and a healthy family. If YOU are healthy – just sit back, take a breath, say a silent thank you to the universe and appreciate it.

 

I had all of that at one stage too – then I found a lump in my breast and it changed – nothing. It changed nothing. I still have all those things, just like you do- except I don’t know for how long I will have them for, so I appreciate them more every single day. But the thing is – you don’t know how long you will have them for either, but somehow some people ignore that fact – maybe because it is an inconvenient realization to have. I have been told I have limited time here – but I am still here. I don’t let it consume my life – in fact I get annoyed when people put a Cancer sign around my neck- I don’t put ‘old age’ signs or ‘heart attack’ signs around yours – we all have to die, and it is not as depressing as you think it is – TRUST ME – I have come pretty close twice, I have wished it once or twice and I have cried about it two hundred times- each time I have felt an incredible calm about it – because I have no regrets in my life. I wouldn’t change any of the heart aches, any of the jobs I have had, and of the friendships I have formed. I am very, very lucky in that regard. And I don’t say it lightly- I have really been lower than low and I have weighed up living and dying, and I have made peace with dying, perhaps that is why because I didn’t give up or why my body didn’t give in – perhaps that is why I appreciate everything so much more, I get to add to my 20 seconds that flash before my eyes – and I choose happy things.

 

I hope you choose happy things too x

 

I reflect on things daily – and I have to type them here as a way of kinda saying ‘ok thoughts, I hear you’ now let me be. There isn’t a day that I don’t deal with one or other thought about what I am going through– I have scars on my body that remind me, even when I am lucky enough to forget. I have a tiny layer of fluff on my body now– new hairs- I complained today to a friend, that I hope my hair doesn’t grow back in patches, I should just be grateful it is growing back at all. So now I am. Hair on my body is a sign of a healthy body – I shaved my legs for the first time in a few months, this week. It helped me feel normal – I then got dressed in front of a mirror, saw my scars, saw my figure, saw my bald head – and in that moment, in those moments- it takes a lot to not collapse on my bed and cry – it takes a conscious decision to get on with just getting dressed and going to work. But I do. And if I can put my big girl pants on each day, so can you. And you must. Passing up the opportunity to be happy is a wasted day. And I am not saying skip to work with a bunch of flowers in your hand… sometimes my happy moment is just having breakfast with a friend at work. The happy part is that I CAN have breakfast with him.

 

Be here, now. And be happy here and now x

 

 

(Quote attached is by Iain Thomas at http://www.iwrotethisforyou.me )

 

on being a Cancer statistic…

It’s not always easy being the one who has to deal with this stupid Cancer thing day in and day out. Sometimes I wish I could just hang it over a coat rack for a few hours every now and then. It is the heaviest, ugliest and itchiest wet blanket I have ever had to drag around. Ever.

 

6 months ago, via a friend, I heard about another girl my age who was diagnosed with Breast Cancer. I remember reading his skype message and having tears in my eyes, just because I knew what she was in for – and I felt sorry for her. During the last – jeez, almost 2 years now, I have had some incredible friends tell me how they wish they could swap places with me, they wish they could take this from me, or they wish they could do chemotherapy for me. The truth is, even if I could swap for just 1 hour of cancer-free-ness, if it meant that ANYONE I loved had to go through it, I would rather have a month of Sundays dealing with it myself. There is no one in this universe that I would wish Cancer and all its accessories, on.

 

Last Friday at my 8th Cisplatin chemo session, I finally met up with the girl who my friend had told me about… it was her last chemotherapy session. She had just finished the Red Devil & Taxol regime that I finished in June 2013. The one that didn’t work on me. Talk about an Awkward Turtle moment. I wanted to be happy for her and positive for her, but at the same time I am jealous that she is healthier than I am and that she has finished her chemo, why cant I finish my chemo soon too? It’s not a jealous that makes me want to throw rocks at her. It’s a jealous that you can only feel when you are in our shoes – and I know she will know how I feel. Jealousy implies that you have something I want or desire…. How crazy that I could want her cancer and her journey. I bet you aren’t jealous of her OR me. Then a funny thing happened- she is busy with a documentary around her treatment, and so we sat down for a casual interview… the first word out of her mouth were something along the lines of, “Tyne, when I see you and I hear about what you have gone through and are still going through, it makes me grateful for where I am and for what I have,”. That was a strange thing for me to hear, it made me happy and it made me sad at the same time. You think you have it bad sitting in traffic and wondering what to cook for dinner tonight – I am the reality check to others around me at the Oncology ward that no matter how crap a time they are having, it can still be worse – be grateful.

 

This beautiful girl has been nailed by chemotherapy, has felt every emotion under the sun, now has to have a mastectomy and skin sparing reconstruction then needs to do radiation – and she is still grateful.

 

She inspired me.

 

We ended up sitting around all talking, and as I spoke to more of the women next to me and told them that I was back because my Cancer came back- I could see the fear in their eyes, the one lady literally welled up. It was not a nice thing to tell them- in fact it is something I have been hesitant to do, and probably why I never talk to the ladies next to me anymore… I don’t want to wet their blankets with mine. But as we sat there, I looked around and there were probably 6 or 7 of us, and I thought to myself that out of 6 women, it is probably bound to recur in at least 1… I was that 1 for that group of 6. And as I realised that, I also realised that if I could swap blankets with them – I wouldn’t. I wouldn’t even want a stranger to go through what I go through. I am doing okay, I am still laughing, still smiling – still coping. This is my blanket. Sounds horribly cliché but, that saying that you only get given what you can handle- jeeeez what bull… and don’t get me started on how I could also handle winning the lotto, but that hasn’t happened yet! I digress, my point is, that while I carry this blasted blanket I am still determined that some good come from it, that it is not all just a horrible waste of time for all involved. I don’t think I am going to reinvent the Chemotherapy regime for Triple Negative breast cancers, in fact I asked my oncologist on Friday if there has been ANY update on trials ANYWHERE in the world, she said nope, she said that it is easier for them to trial hormone influenced breast cancers, because they know what to look for.

 

Awesome, is what I thought. Those ladies already HAVE pills to take to try and help. I have nothing. Stupid Pharmaceutical trials – #YourDoingItWrong

 

I feel guilty when I speak to others and tell them my first treatment failed me- but I also know, that I carry my wet blanket better than other people in that oncology ward – and because of that, I don’t feel guilty telling a select few people, about my recurrence. So many women there come up to me and tell me how proud they are of me for doing the whole bald thing, how they are too shy… I tell them that it’s only awkward because not enough white women do it, I tell them I am trying to fix it for them 🙂 . Truth is, second time around losing my hair, I can’t be bothered to try hide it, I hate it, I cringe when I see photos, I feel like Gollum from the lord of the rings, but when I walk into a room I hold my head higher than usual because F#CK CANCER, I’m bald and full of tumours but I am alive – that is how basic my level of appreciation is – being alive and being happy, is all that matters. Everything else can get back in line.

 

So, my blog today is for the 6 women I met last week who are all soon to be finished with chemotherapy, they will throw their F#ck You Cancer Parties, and they will get drunk on tequila (and regret it) just like I did. And in 3 months time when they have their next CT Scan, and they get the all clear, perhaps I will meet up with them and have a F#ck You Still, Cancer party – because I can 🙂

On a week or two of quiet time…

My last blog was 2 months ago… and true to form, silence is usually a sign that something is not quite right…

 

Two months ago I went through the dreaded week of having my CT scan, then having to wait a week for the results. I also was told I would be finishing Cisplatin- the chemotherapy that has been shrinking my cancer (albeit murdering me in the process). You can try, as you read this, to imagine what it feels like to live through that week. But you cannot understand. At school I can remember feeling anxious and nervous on the drive to school before a big Friday morning test- multiply that feeling by a million and you are still nowhere near the feelings I dealt with during that week.

 

In the end, the results were positive – the tumours, all five of them that are now documented, had shrunk further. I know this is good news – I just wish they weren’t there at all. Seeing their sizes was like naming a pet – it makes it real and yours. I really found it hard to jump that hurdle. Georgia, my oncologist, didn’t make it any easier for me when she explained the results and said they are fantastic, but asked me if I could handle a few more doses of Cisplatin. ‘Can I handle a few more doses?’ I asked myself. Well, I am still alive, so despite my protests, it has not killed me. Irony being that if I said no, that decision may kill me. So I said Yes. Of course. But I said yes with a lump in my throat and tears in my eyes because I know that for the chance of the chemo shrinking these darn tumours more, I risk feeling my worst, like I have done over some of the past 6 months. It was not an easy decision but it was an obvious one, at the same time.

 

While all of this was going on, some changes at work were upon me. I don’t need to mention if they were good or bad – but just saying the word ‘change’ should be enough ; when my life is a place of as much instability as it is, a place like work that has been so consistent and full of non-change, rattled my cage slightly, when it was shaken up. Even though all the shaking was done with my best interests at heart- I felt like the universe was testing me again –

 

Well, the universe won – because over the same week or two period, my hair fell out again. Every last one. Okay, I lie. 99.9% fell out. In clumps. In tufts. In handfuls when I pulled it and in handfuls when I didn’t. I honestly never thought I was have to shave it off again – I was not quite prepared.

 

I cried. A lot. I didn’t just cry for this hair, I cried for what I went through in December 2012 over again. It reminded me of a horrible, horrible time, and it threw me from being two haircuts into an actual hair style, and it nailed me to feeling naked, vulnerable and looking like a cancer patient again. So I cried some more. Why did it fall out? Technically the chemo I am on, is NOT meant to cause it to– scientifically though, enough poison of any kind in ones body can cause all kinds of things – so I think that had something to do with it. When I asked my oncologist what the @#)@$ hell was going on… do you know what she said to me? (this is at the same time as she conveyed my CT Scan results and asked me if I could do more Cisplatin)… she said that perhaps I am stressed.

 

No comment.

 Image

Bald and freezing in the Johannesburg winter – I feel like a Who in Horton Hears a Who, “I am here, I am here, I am here”. And I am still lucky to be so. I live in somewhat of a Swarovski crystal house… it is a fragile place there is no doubt, and there are dangers to letting people in and being one of those people that gets let in. And I still make mistakes like normal people who live in brick houses do – just like you do. But sometimes the universe – even though it kicks you when you are down and takes your hair from you when you least expect it while making you do more crappy chemo than you care to, sometimes it has silver linings. Silver linings that make one day of happy, worth all the days of crappy.

 

And from where I am sitting, it is the silver linings that keep me going – because all that really, really matters, more than money, more than old age, more than how much I hate drinking green juice more than anything, is being happy- now. 

  

Marry your best friend – Anonymous

Marry your best friend. I do not say that lightly. Really, truly find the strongest, happiest friendship in the person you fall in love with. Someone who speaks highly of you. Someone you can laugh with. The kind of laughs that make your belly ache, and your nose snort. The embarrassing, earnest, healing kind of laughs. Wit is important. Life is too short not to love someone who lets you be a fool with them. Make sure they are somebody who lets you cry, too. Despair will come. Find someone that you want to be there with you through those times. Most importantly, marry the one that makes passion, love, and madness combine and course through you. A love that will never dilute – even when the waters get deep, and dark.

I was lucky enough to be at two very happy peoples wedding this past week – one of the readings was of the above. I wish it for me, and I wish it for you x

 

 

on the questions you asked me to answer about cancer, and stuff…

A reminder that the below answers are my answers, they may not be true to everyone and they are definitely not professional medical opinions… but I guess any answer at this point is probably one up from what you have currently… baby steps are good…

 

How do I support a friend who has Cancer? I don’t know what to say or do

This was asked by a friend who lives overseas- my response would be to just keep in touch. From Facebook messages, likes and comments to Whatsapp conversations – just touch base. It has been strange but a lot of my support has come from people who do not live within a 10km radius of my house. Friends in Cape Town, family in Holland and Durban – people who can’t just stop by. Just a message letting you know that they are thinking about you goes a long way. I often find that it feels like I have dropped out of society, probably because I can’t always attend social things like braais or drinks after work- random messages that show you are still thought of, go a long way. I’d rather decline 20 invites than my friends not invite me at all.

 

I have been lucky enough to not need much support with lifts to and from Chemo, my mom lives on my road and has all the time in the world to drive me, Miss Daisy. Perhaps this is something you could offer someone else, if you ever met someone else having chemo. I remember I had a few offers from people at work, and I always thought it was a really kind gesture – it sucks feeling that you are a burden, so offering – often – is not a bad thing.

 

My other bit of advice is just be there- be the same friend you were before. Don’t stop calling or texting. Yes it gets tiring updating 10 friends a week on the same story, but after the tears there are always laughs at something – and it’s those laughs that make it worth it. I am the type of person that when I am not feeling my best, I go quiet and I stay home… friends can pick up on this – GO to their house, force them to let you in. My friends can ask me ‘can I come over?’ and I will say no… if I haven’t seen you for over a month, you need to just arrive with a milkshake, even if it is just for 5 minutes. It is not easy asking for help or letting people know that you are not okay- it is not easy being strong all the time.

 

And, just be normal. Just because I am sick or having a crap time on chemo- doesn’t mean you need to walk on eggshells around me. Ask me how I am, tell me you are thinking of me, but then also tell me how drunk you got last night, or what you got at the shops or who you ran into. Just because for some days of the week I feel a bit down, doesn’t mean you need to say the right thing… there IS NO right thing. Anything is fine. Just be normal.

 

Oh, and also, having cancer is now my norm. Chemo is part of my routine- like gym and Sunday lunch with your gran is for you. And I am okay with it. It isn’t scary, it doesn’t make me cry, and I don’t feel special for having to have it – my life is a bit different to yours, but just because you do Piano lessons, doesn’t mean it is all we should talk about.

 

 

How sick does chemotherapy make you? Why can’t you man up and keep on working through the nausea?

The truth is, chemotherapy affects every single person differently. There are generally a list of 10-20 side effects per chemo type, but if 10 people were in a room, we would all have a different selection of effects that pertain to us. So, to answer the question of why cant one man up and work through it? I guess some people could… I couldn’t. I still cant – it doesn’t make me any less of a (wo)man because of it.

 

How sick does chemo make you? I’ve used this analogy a hundred times, probably because I KNOW people my age can relate- the day or two after chemotherapy feels like the worst hangover of your life. You know the kind when you wake up and throw up instantly, it feels like that – except you can’t throw up, because you are actually just nauseas- not sick. So, the feeling you have just before you throw up? That cold shiver and the feeling in your tummy? You have that, none stop for 2 to 7 days sometimes. Pregnant women can relate to this I believe. Then on top of this nausea, some other side effects I have had are aches and pains – my muscles and joints have felt like I have run a marathon AND had flu at the same time. The chemo I am on now, has effects on my ears – they ring constantly. It feels like I live in lala land because my right ear will ‘zing’ then my left, none stop and all day. On top of this (and this all happens at once) you try to eat things, but the things you used to love are not appealing – the ulcers in your mouth and on your tongue make half the food feel like lemon on an open wound. Everything tastes off. The Red Devil chemo I had, had nasty effects on my senses- smells could make me sick, food tasted like wood; the canteen at work was a mine field of torturous smells and sights of foods I had no desire to eat.

 

You also feel insanely tired; with every cell in your body being nailed- your body is burning energy just keeping your healthy cells going – you cant make it through a work day like you used to. Thinking is tiring – TRUST ME. If I had to be in meetings and use my brain, I could last a couple hours max but if I sat quietly at my desk just nailing emails- I could last more.

 

If someone you know can work through a day while they are on tough chemo – they are superstars. For me- going to work was a saving grace from the nothingness happening in my flat. Surrounded by bottles and boxes of medicine – my desk with its demanding to do list and emails were and still are a welcome distraction. I go to work as soon as my body tells me it can – and I take my body home as soon as it tells me to, not listening to my body will land me in bed for 24hrs sleeping the following day. It’s a fine line working out how much work is too much- I hope everyone can have the support that I have had at work in this regards.

 

 

Would I suggest girls going for genetic testing if their moms or grandmothers have had cancer?

Truth is- my mom had had breast cancer twice when I went for a mammogram and genetic counselling at age 29. You can do it online, you fill in a million pages of family tree information and then they ask you some questions – I was told that unless someone else in my family had cancer, there is no reason that I would be likely to get it. I went for genetic testing… they didn’t see any red flags. I guess cancer doesn’t play by those rules.

 

My advice would be and my comment is, that if your mom or grandmother has or had cancer- like breast cancer, then do like I did – be aware of it and check your girls out 10 times more often than your friend who has no family history. Checks became part of my daily or weekly routine; shower time – soap up and do a quick check. As a woman you know what was there the week before and what is new today- it’s just one of those things. I knew to look out for changes in shape, nipple discharge of any kind and obviously lumps and bumps. I had found a lump before, under my arm, but it turned out to be a fatty cyst (biiig relief!) funny thing is – well, it is not that funny, but when I found my lump under my arm (remember that I found it by just rubbing body cream down my side; the lump was on the outer edge of my breast- size of my thumb nail) but the week or two weeks before that I had done a self-examination – I had gently squeezed my left nipple- and tiny spots of blood came out.

 

Yip. And apologies for the overshare- but you asked for answers.

 

I don’t think I have ever mentioned that before – or admitted it – I guess overshare has no relevance on my blog anymore. But yeah, I had a really early warning sign – I KNEW that nipple discharge was a bad sign. What did I do? I convinced myself it was nothing and I must have squeezed too hard. It couldn’t be cancer. It was a mistake. Luckily for me I guess, I found the lump not too long afterwards. But yeah I was one of those crazy people who finds a sign and ignores it. I kick myself because of that. Now, when I find a mole that looks like it has changed by a fraction of a millimetre I am at the Doctor checking it out. Please – if you show ANY sign of ANYTHING that could be cancerous, check it out… it’s the early detection that saves your life.

 

I think that our generation, with our woollies food that lasts 10 days and all the fizzy drinks we drink – our chances of cancer are higher than our moms and grandmothers were – so genetic testing isn’t enough to be 100% factual, will you or wont you. Just know your body, check your body, and think positively while you do so- I never felt my breasts thinking ‘Oh God I will find cancer today’ it was just a routine check, like brushing your hair, you don’t brush it fearing how much will fall out or if it will turn grey while you do so! Being aware and being cautious is all you need to do.

 

A question about how can chemotherapy not work…

Easily I guess. Just like how sometimes you can start your car but the battery is dead. Nothing has 100% success rate, because nothing is 100% the same. Cancer is the devil – Oncologists are the closest people to understanding it- but I think other than that, they only maybe understand 48% of it. In a broad generalisation of chemo, there are only like 6 types available… but think of how many cancers you can have. The treatment options are limited to variations of different cocktails all made of the same ingredients – at some point, sadly, it may not work as we wished it would. Reality is something that gets sucked up into the cancer conundrum – when you are diagnosed, or someone you love is diagnosed, it doesn’t matter what the reality is, you become so desperate to find a cure that you will do anything and you believe anything – look at how close I came to flying to Houston to a clinic that has as many bad things going for it as it does good things (but I have discussed that in detail before). Hope is a powerful thing – but you can’t lose track of reality, and sometimes the reality of the situation is that perhaps the cancer is too far gone to cure. Perhaps people just need something to blame. Perhaps it isn’t the chemo that failed… perhaps the cancer just won.

 

Why don’t doctors come forward with everything they know?

I don’t know. That is my honest answer. But having been on the receiving end of only half the story, and having moaned about it to a few people, I have had some advice which may have kind of perhaps made sense.

 

Perhaps they don’t tell us everything, because they don’t know. Like my estimated time left based on my situation. There IS a rough statistic of 3-5 years. But my oncologist wouldn’t even tell me that (I went to a second oncologist who perhaps found it easier to tell me because she didn’t know me), but even being told this, there are still the odd few that die within days of rediagnosis or that live to be 98 years old – it is JUST a rough statistic… somehow, perhaps in my deluded anti-depressant fuelled mind, I plan very much to be that odd ball statistic that grew the curve… 98 may be excessive, but late 70s would be grand. Another reason that someone who commented on my blog pointed out, perhaps they don’t tell us because we don’t need to know. If it meant no difference to my health, why would the doctor explain just how badly my chest was infected with Cancer. Georgia told me that she couldn’t operate, that I couldn’t have a lung transplant, and that the cancer was in both lungs. What I found out later by taking a dictionary to my CT scan results was that I had a 10cm x 5cm tumour in my pleural lining and innumerable (too many to count) smaller tumours in both my lungs… why didn’t she tell me how bad it was? Well, I was pretty bummed just at the news, perhaps she felt it would be a kick in the ribs to hear the truth. A bit like when parents tell you that Fluffy ran away… fluffy was put down or was hit by a car – he didn’t simply wander off. But it is easier to digest that perhaps he just ran away.

 

I think the trick is to get to a point with your doctors whereby they understand how much to share with you, and that you find GOOD alternate sources of information. Google is not one.

 

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That is pretty much the gist of the questions I got, I expected so many more ‘medical’ questions – but no, most of them were similar to the above. I hope my answers shed a bit of light in an otherwise very dark area x

 

Because I always post a picture, and because I couldn’t find a relevant picture for the above post – you get to see my amazing cat, Charlie, when he was a kitten – taking on something bigger and scarier than he was, much like each of us have to do, in our own ways, every day x

 

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on what happens next…

In 10 days I will have the last dose of Cisplatin – the chemotherapy that has been giving me a rough time since December when I had my first dose. Cisplatin, or Sicksplatin as I have been referring to it, and I, have a love-hate relationship. I love it because it is part of the treatment that has shrunk my 10cm x 5cm tumour to 3cm x 2cm… but I hate it because it sent me spinning through some really dark times while its side-effects judo chopped my whole mind and body around my bedroom for 5 days at a time.

 

Why am I stopping it if it is working? I don’t have a choice. The stuff is so toxic to my body that I can’t physically have any more of it. The effects on my organs – and my ears, oddly enough – means that it is limited to X amount of doses. I think I will have had 6 in total. Scary to think that this thing that has helped ‘save me’ is also something that has the potential to destroy me – or damage me considerably, at least.

 

What does stopping this chemo mean for me? Well, I guess only time will tell. Ironically, even stopping it leaves me with conflicted thoughts on the topic. On one side I am thrilled I won’t need to struggle through nausea for days on end… but on the other, more serious side, yeah, I am pretty petrified that the cancer grows back. I am on a combination of 2 chemo’s at the moment, one which kills the cancer cells (cisplatin) and one that stops cancer cells reforming (gemzar)… what happens if it is the cisplatin that has been doing all the hard work, shrinking my tumour, clearing my lungs.

 

It’s a scary thing to think about.

 

I can feel that even though I don’t want to think about it – it has a way of creeping into my mind. I’ve been getting really tired lately, like falling asleep by 7h30PM tired – my mind spins instantly to something must be wrong. In the mornings, now that it is getting cooler, my chest has been a tiny bit tight ; something that for me, an asthmatic, is completely normal for this time of year, but instantly my mind wonders what is going on inside my lungs, even though I haven’t needed to use an inhaler for months. Each time I have a cup of tea, I wonder if the tea spoon or two of sugar I add to it, is doing more damage than I know. This past week I didn’t eat as healthy as I should have, eating main meals during lunch at the work canteen and letting dinner be just a slice of toast or cereal. Each time, the following day I wonder what damage I have done to my body. How can my body be fighting off cancer if I am not putting in to it the rocket fuel it needs.

 

The mind can be evil when it wants to be.

 

But the mind can be the total opposite, when it needs to be, too. Despite my week of unhealthy eating, I have been feeling happier and (honestly) healthier than I have felt in a few years. The friends I see tell me how well I look, perhaps it has something to do with the fact that out from absolute nowhere and at a time when I was completely not expecting to- I met someone. Well, I ‘re-met’ someone whom I first met 3 years ago at a best friends’ wedding.

 

We started talking again in December when I got really sick and decided to meet up- to take a timeout from life and to settle the dust of the past. It turned in to more. It turned in to something I could never have imagined in, well, in this situation. Take a step back and think of all of this from my perspective. When my last relationship ended I was convinced that I would never meet anyone ever again, not because I don’t get out and not because I didn’t want to, but because firstly, I have Stage IV metastatic breast cancer that has spread to my lungs (not something every girl you meet, has) also just getting me out from behind the 10ft wall I have built around me could be impossible for said suitor. I believed that even if someone managed to get me to let them in, I have such hang ups about my scars and the way that my body now looks and feels, I was convinced I would never feel pretty or beautiful ever again. Ever again are strong words – and they are no over exaggeration. I had pretty much made peace with it all.

 

Then this person came around and made me feel everything and more. Why am I going on about this? Because feeling like I do, I feel like I have more reason to fight this stupid cancer that is playing hide-and-go-seek in my body. A month ago, I had my work as a motivating factor, I had Charlie my (most amazing) cat and I had a hundred great memories and experiences from my 31 years here. Now suddenly those hundred things are not enough. I want a hundred more.

 

Now more than ever I am so conscious of how short life can be- look how quickly my life changed in December, but also look how quickly my life changed 4 weeks ago when this person walked into it again. It has taught me that life is never over… just when I thought my book was written. I have told a few people the full story, and you would be amazed how many have had a tear in their eye. It sounds completely lame, but my story was written- I was behind my own ten foot wall, I had no guaranteed future for anyone to invest in – and now, suddenly, I have a new chance at happiness. Funnily enough, the best thing about being in my situation, and by my situation I refer to the general stats of life expectancy being 3-5 years on average. But the best thing about being me right now? I am not going to waste time faffing around with things that don’t matter. I am not going to get caught up in admin, in stupid emotions or fears or hang ups anymore. There is this one person who makes me happy and to me, for a very long time now, being happy is all that matters. For me – anything less than happiness is a waste of time.

 

Perhaps that is the silver lining of being in my situation – appreciation of and for happiness.

 

I think it is one of life’s little cruel lessons – when you have all the time in the world, you waste it and when you have limited time you are desperate for more.

 

Chemotherapy now is a means to an end, it is now a way for me to have one more day here – and one day is better than no day at this point. I finish one course in 10 days, I am going to keep my mind focused on the happy thoughts of what the next couple months have in store for me, instead of thinking about what could come from the end of this treatment.

 

This person knows the risks involved in getting close to me, he knows he is in for some tough times (considerably tougher than most would even THINK about getting involved in) but he wants to be next to me while I go through them. And that makes me- even with everything I have going on- the luckiest girl in the world.

 

Take nothing for granted. Do what you can to be happy x

 

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on losing my Dad, 10 years ago…

It was the14-04-2004 and it was early on Election Day – I worked at Red Bull and we had a busy day planned of giving product to people waiting in long lines at polling stations. I woke up early and went through to the lounge, to collect the map book so that my teammate and I could navigate the streets of Johannesburg… a map book… my how times have changed. My Dad was in the lounge, watching TV- not a strange thing for 6am on a week day. I think I may have mumbled a few words to him while I made my way between rooms. He didn’t say much in return- he was just kind of stuck on the news I guess.

 

I packed the car with enough liquid wings to fuel the nation, and I went to tell my mom that I was off on my way, it was maybe 06h30am and I had to pick Pat up en route to the first stop of the day. I yelled goodbye in the usual carefree way a 21 year old would yell to their parent… but I said to my mom, “Dad’s being weird”.

 

With that I flicked my long hair over my shoulder grabbed a cheesy CD and was off.

 

I don’t think it was even 8am and we had to stop past my house to get more stock for the car. We pulled into my driveway – laughing about something stupid I have no doubt. My mom was at the entrance gate, in her dressing gown and in a state. Much more than that I don’t really remember. I think she said, “Your father is dead”. It didn’t make any sense, the words went in one ear and were spat out without being acknowledged. That was it. That was the moment my life changed forever.

 

We had a long brick path up to my front door – I didn’t go further than it. I never went inside. My Dad was still in the lounge – where I had seen him watching TV not even 2 hours earlier. It didn’t make any sense. My brother was in the shower. Not only did I lose my Dad that day – I lost my brother. We have still never spoken about what happened that morning.

 

When someone dies – time stands still.

 

My neighbour – who is more like my other brother (being a common name, my friends and I have affectionately named him Brother John). I remember him hugging me. And I remember watching the coroners van drive away from Number 25, and up along Garden road until it was out of sight. None of it made sense.

 

We all kind of lost the plot that day. Unless you are prepared for death – I am not sure how else one is supposed to act. You don’t simply handle things like this with grace.

 

Soon afterwards, with the demise of my family as I knew it, I threw my-self into my work (hey, noticing some trends here). I worked night time shifts – going to clubs and parties, getting drunk and not caring. I stopped hanging out with close friends and chose work and strangers over real emotions. Inevitably getting boozed and crying my eyes out most evenings. Hey, I was 21, I recovered quickly the next day, and who was going to tell me to stop.

 

In the strangest turn of events, some of the strangers who I filled my time with, have since become some of my closest friends. And the work that I threw myself into, rewarded me with growth and a positive name in the industry- if I hadn’t thrown myself into my work then, I would not be where I am now. My time spent at work events allowed me to be someone other than the poor girl whose dad died just a few weeks ago. I was confident and bubbly – I could hold conversations and I could have fun. I met people who I would never have met had my life not changed 10 years ago today.

 

My Dad left me, not because he wanted to- but because the universe needed him elsewhere. He would have schooled any boyfriend I have since met – and you would all have been incredibly lucky to have met him. He was larger than life and could tell more jokes than you could ever remember. He had a brain like an encyclopaedia and a heart bigger than most could imagine. He messed up and made some bad choices – I’ve done the same and probably still will. But he made me who I am, my dimples? His. My blue eyes? His. The way I wear my heart on my sleeve? His doing.

 

I overheard my mom tell a friend in December, when I was really ill, that the reason my Dad isn’t here now, is probably because he wouldn’t have been able to handle what is happening to me. Probably the only reason that I can agree with as to why my Dad left me that day.

 

Dad. It’s okay. There isn’t time for tears with what I am going through- we gotta just get on with it. Plus I cry enough for both of us. I’ve turned into a mild alcoholic- okay okay, not fair – I am a strong supporter of alcohol – and I appreciate it very much. I regret throwing so many of your things away. Your collection of TinTin books. Your wine labels. The stamps. I am proud of our name and I wish there were more of us – 3 Lankwardens in South Africa is not fair to the legacy you deserve. And with my current situation nothing pains more than the thought of your name ending here.

 

Was it selfish of the universe to give me no warning of my Dads passing? No. It was a hard lesson of ignorance learned on my part. You shouldn’t be given a ‘death date’ in order to appreciate the people around you. I learnt a hard lesson that day – not sure my family learnt the same lesson – we are not exactly all the closer for it.

 

Life is short.

It is short if you are told your time is limited – like I have been.

But you are stupid if you think that just because you aren’t me, that you and the time of your loved ones isn’t limited.

 

Don’t wait for the day when you pop home quickly, and your mom is in her dressing gown in tears… don’t take the people in your life for granted. Don’t brush them off with a ‘love you – bye’. If you love them. Spend time with them. I often think about how I will plan my funeral (hey, a girl has to pass time you know) and sometimes I get angry thinking of the people who may attend… I almost want to put a caveat on my funeral. If you haven’t spent time with me and spoken to me then you shouldn’t come and cry about my departure… cry now – cry happy tears because we can still share them together – I am here, I am alive there is no need to miss me or be sad for me or anything but have a laugh and perhaps a glass of champagne with me x
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