PINK High Tea Party

I had a wonderful afternoon on Sunday when my closest girlfriends came over for a PINK high tea party; a mini event to celebrate my hair loss as well as to have a bit of fun and a giggle over some games; all with the theme of breasts! It was so lovely to sit over a high tea (yes posh sarnies, scones (courtesy of mum; thanks ma!!), friands, chocolate orange cake and some delicious PINK cupcakes (generously donated by Poppy Cakes at the Emporium - thanks Chris and Theo!!)

It was a true ladies feast all complemented with some pink bubbles! I was feeling a little tired so I skipped the bubbles but I had such a lovely time playing some games and having great laughs and conversations!

It was a really special day for me as my big sis was over for the day, it was the first time everyone saw me with no hair and since we got engaged, so there was lots to celebrate! And I must thank my wonderful UK family for the delivery of the amazing champagne for the party (thank you Linnie B and John!)

Here are some memoirs of the day. I want to thank my beautiful friends and family for making the day really lovely and special for me.... and I am so thrilled that my fundraising site has nearly hit $2,500. Thank you so so much to everyone who has donated to the cause of cancer research. I am so delighted with all of the support everyone has shown me. http://www.everydayhero.com.au/susie_johnson

THANK YOU from the bottom of my heart. xx

Shell having fun spinning Joey!

Nomes was getting head spins after all the turns!

Joey missed the nipple but the line up was accurate!

There were sweets in this bra and everyone had to guess the number!

Milena picking her prize

Our Big Announcement

Last Thursday, we had a fairly normal day. We had popped out to pick up a few things and it was the day my gorgeous partner had planned to cook me a nice dinner; something which he has done fairly regularly over the past 7 years.

He prepared a delicious three course meal in our home and it was really lovely as it was the first time we had sat down to a long gourmet dinner since this ordeal began and it was also the first day my hair began to fall out, so it was really nice to sit, relax and not think about that!

Just after our fabulous lamb main course, he came out with a little photo album which had memories of our last seven years, four months, three weeks and one day together! There were photos of all of our trips, tickets to helicopter flights in NY, Wimbledon, the Bolshoi Ballet and much much more......and it immediately brought a tear to my eyes... it was so nice to remember all of our wonderful times and it reminded me of how lucky we have been to have experienced all of these amazing things together... and we are still only 35! We have had so much fun over the past seven years and to have had the experience to live on the other side of the world and meet the man of my dreams overshadows everything that is happening to me right now.

He then came out with a beautiful red velvet cake in the shape of a love heart, which was our dessert. He then asked me to cut into it and as I did, I struck something inside there..... he then took the knife and cut into it and pulled out a little bag with a small box inside it.... it was at this moment, I went into shock! He then pulled out the box and opened it up and all I remember seeing was an exquisite yellow diamond; something I have always wanted..... he then got down on one knee and asked me to marry him...... it brings tears to my eyes five days later..... it was very romantic and very perfect and of course I said yes immediately!

We are both absolutely delighted and it will be something to really look forward to in 2011 when all of this will be over. We are getting the ring designed and made and it will be my dream ring; it's beautiful!

I have always had a little joke with some of my friends who have been in serious relationships whereby I ask them if I need to go 'hat shopping' yet.... as many ladies wear hats to weddings in the UK..... so now I have two reasons to go hat shopping.......

Losing the Locks

My oncologist predicted I would lose my hair 2.5weeks after my first chemo treatment, which would mean I would start losing it this week. I was feeling really good last Thursday and went to have a shower at around lunchtime and it's where it all began...... I lost my first 'clump' of hair. It was fine and it didn't seem to be falling out during the day, so I decided to wait and see how it goes.

On Friday, I lost a few clumps of hair and on Saturday, as we were getting ready to go for lunch (to celebrate Dad's b'day) I got out of the shower and my hair was literally a matted mess! I couldn't get my comb through it, despite me having washed and conditioned it; it felt like a dead mess...... and I lost half a bag of hair, so I decided to take matters into my own hand and call my hairdresser....he very kindly offered to do 'the shave' at the end of the day while there were no other clients int the salon. We went to lunch knowing it would be my last few hours with hair for a long time... a weird feeling!

So it came to 5pm and I began to feel really nervous... we had been busy up until then so I didn't really have time to think about it. It was very emotional on our way to the salon; I couldn't quite believe it was happening.... my hairdresser also obviously didn't like having to do it either but he was so kind and put me at ease immediately and it turned out to be nowhere near as bad as I thought it would be.... I just kept thinking that I would NEVER be shaving my head again in this lifetime, so it was a once in a lifetime experience AND more importantly, it was one step closer to the end of this life challenge! About 30mins later, I had no hair left.....AND I don't look as bad as I thought I would.... what I did realise is how much space my hair took up as my hat was far too big for me.....

Joey was down on Sunday with some new hat prototypes..... she made two gorgeous new styles (which she is going to teach me in a couple of weeks) and the hat which she thought was too small (which JUST fits on her five year old son) actually fits me perfectly! So I obviously have a small head, which means I may even be able to shop in the children's dept for some new hats!

So all is going ok with the new hairstyle (or headstyle) and the only comment I would make is that I have noticed how sensitive the skin is; particularly at the back of my neck. I have had to put lots of moisturiser on it and it seems to be fine, however, I know I will need to be very careful in summer as this is raw skin that has never seen daylight.

I have also been going to the drawer for my hair tie before my shower; purely out of habit and I haven't quite gotten used to the fact that I can wet my head under the shower without having to go through all the layers of care; conditioning, hair products, combing, drying etc so that has felt strange. I will pack all of my ribbons, hair ties, hair dryer away this week.

I have now officially begun my journey as a bald woman and it will be four - six months of living like this. The good thing is that as you cannot see your head as you walk around, I have forgotten a few times that I have no hair... and I'm much quicker getting ready as it's so easy washing your scalp, moisturising it and putting a hat on your head!

I had my close friends come over on Sunday for my PINK high tea party, which was a fundraising initiative for cancer research and I will write more about that now....but it was really nice that none of them looked at me strangely and in fact, they didn't make a big deal out of my new look at all so I really appreciated that! We had lots of fun......one of my friends little girls said that she loved my new hair cut... and was very sincere apparently so that was really sweet....

Unveiling of the Sewing Room

Well after a week of not blogging, I'm back AND I have plenty of news to tell..... firstly I had a really good second week. While I wasn't doing much each day, I was feeling really good generally, however, I did slip backwards yesterday having been quite busy for a few days in a row.... so it has hit me how sensitive my immune system is and as soon as I feel a sore throat, fatigue coming on, I need to rest my body..... after a restful day yesterday, I'm feeling much better today......

So here is the new sewing room as promised. It hasn't been getting as great a workout as I would have liked, however, I have put together a few new hat combos which I'm not convinced I will wear or liek as yet but here they are for your comments.

Help Me To 'Make A Difference'

As you know, this week marks my final week with hair. I'm not sure whether I'll make it to the end of the week but I am really hoping so as we are celebrating my Dad's birthday on Saturday over lunch at a restaurant (please hair, hold on until then!!!).

Obviously I am very upset about this loss which I think could possibly be the most difficult part of the challenge over the next six months. While I have endured surgery and one chemo treatment so far, the reality is that no one from the outside in can tell that I'm sick; with my hair loss, everyone will notice! Let's just say that a couple of weeks ago my new hat/scarf collection was being pulled out of the drawer every day for a bit of an experiment...... for the past two weeks they have been out of sight as the reality is hitting me hard that this is my last week of looking well..... like Susie!

I feel this is a really defining moment for me as it will take a lot of courage to walk outside and not care what other people think.... and possibly get used to being stared at regularly! (hence the reason why I'm now seriously contemplating a wig).

Rather than simply being upset about it, I have decided to take control and create an opportunity for other people from it..... so I have created an online fundraising website at http://www.everydayhero.com.au/susie_johnson and I am asking all of you to make a small donation towards Queensland's leading cancer research agency Cancer Council Queensland. If we can all contribute to finding alternative treatments to chemo more quickly, it will be hugely rewarding to know that we have prevented someone from having to go through the ordeal of chemo. The reality is that if there was an alternative treatment available, I would not have to endure the pain and sickness that chemo brings, nor would I lose my hair!

I am also hosting a small PINK high tea party on Sunday with my close friends to celebrate either the final days of having my hair or possibly the first day of not having any! I am looking forward to that.

I have had a super week end of feeling really great. I have had my first hat order (from my sister!) so I'm feeling loved and it was great to spend the week end doing normal things and feeling so happy!

I promise that my next update will have pics of my new hats and the sewing room!

One Week On....

I have woken up today and I'm so happy!! I am feeling on top of the world.... for the first time in many weeks, I feel almost normal, which is such a gratifying feeling for me right now. If I continue to feel like this for the next two weeks, I will be one very happy lady!

We completed our sewing room yesterday which was really exciting. I will post pics today. I have a lovely view of the city as I sew, which I'm sure I will appreciate every time I sew the wrong pieces of fabric together - which happens quite regularly! I take a look at the view, grab the quick unpick and off I go!!! I have to say that I find sewing a bit of a science; you have to learn which side of the fabric to pin to which side, which has been a challenge for my brain this week that's for sure. But it keeps me amused and I enjoy doing it, so that is the main thing right now!

We actually went out yesterday for a lovely walk along the waterfront at Sandgate and we also had lunch; what a treat! It felt SO amazingly good to be outside in the sun and dining, particularly as it was one of my good friends' b'day in NZ (Happy b'day Kyles!!) so it was nice to get out and celebrate the beautiful day and this special occasion.

Quite a few people have been asking about my eating habits and whether I feel like eating. I have to say that I have been extremely conscious of what I'm putting into my body over the past week, but I have also found that I have had really big cravings for certain foods! The other day, I had a massive craving for meatballs (I haven't had meatballs for years by the way!) so we found a great recipe full of fresh herbs and veges in Jamie Oliver's cookbook and Matty prepared them for dinner; they went down a treat!

It's true that you feel full really quickly and if I have a sandwhich for lunch, I'm really full. It is recommended that you have 5-6 small meals a day; I have been having about 3 small meals a day which I find satisfies me.

I have also found that I have had no desire to eat any junk food. I NEVER thought the day would come where I wouldn't look forward to a piece of dark LINDT chocolate after dinner.... well I haven't had any for weeks as I just don't feel like it. This is the same with any other treats including wine..... but I'm sure as I improve, my tastebuds will return and I will feel like coming back to all these little treats that I enjoy.

It's funny that some people have talked about gaining weight during chemo and this is something I was really afraid of. I'm not sure how this would happen so far, as my appetite has been much smaller and I have definately shaved a good 5kgs off over the past few weeks..... so my challenge will be to eat enough so I don't lose too much weight (thank god it's not the other way round!!) over the next six months. I'm confident I will be able to manage this quite well though so it's not something I'm worried about any more.

My big sis arrives from NZ tonight so I'm very excited to see her; particularly as I'm feeling so good. It will be great to have a weekend full of fun, laughs and normal things!

One Step Forward, Two Steps Backward - where did that light go?!

Well I know that anyone who knows me will not want to read this, however, the reality is that yesterday I took a big backward slide; BIG TIME! I felt absolutely terrible from the minute I opened my eyes to the time I went to sleep. It was the first day I haven't left the house or spoken to anyone as I felt dreadful!

Initiatlly I felt very upset and frustrated, however, I continued to receive so many positive words of encouragement throughout the day and the reality set in that this is going to be my life for the next six months; and I'm going to have to learn to take both good and bad days as I cannot take my health for granted any more.

On reflection I realised how much I don't like it when things don't go my way (it wasn't quite a tantrum; I just fully expected to feel better than the day before) and it hit me that this experience will teach me patience and discipline (two skills I really need to work on!!) and to really slow down and take it easy on my body. I now know that there will be good and bad days and that the not so good days will make the good ones really fabulous.

I am feeling better today; not brilliant but I will be able to go for a walk which I know I will really enjoy. I will be smelling the roses on that walk, that's for sure.

Thank you to everyone who sent me texts and messages yesterday; you got me through a tough day....

Finally I wanted to share with you this picture from a friend in London....thanks Paul!!

Seeing the Light after Treatment No 1

Well today (day 3 after first chemo treatment) is a bit of a momentous occasion for me personally as I am very proud to report that I made it back to the gym this morning after four weeks of illness. I awoke at 2am last night with chronic bowel pain (sorry for you with weak stomachs but constipation is a fairly common side effect of chemo with all of the nausea medication you have to take; but I agree it's a horrible topic to talk about; sorry!) so I got up and took some of my medication and did some research on how I can alleviate this issue.

I have been so conscious of eating only fresh, healthy high fibre foods and I was doing everything they tell you to do; but the one thing that I didn't think I was working hard enough on was exercise..... so after a very sleepless night, I got up at 6am and tootled off to the gym and began my mission! I have to say that it was extremely satisfying for me, particularly when I broke into a jog for the first time; the endorphines kicked in and I realised for the very first time that I am going to have to physically and mentally fight this disease! I felt like I was getting one step closer with every footstep and that was such a gratifying feeling for me. So 4kms later ( a very slow 4kms I must add), I returned home elated; woke Matty up to tell him my exciting news, called mum (and by the way it immediately fixed my initial problem!!) and realised that I feel better today than I did yesterday; I am making progress and it's fast; so I'm lucky!

I now figure that if I have one chronic day each treatment, knowing that I will feel much better day on day, I will be ok, although I'm sure it won't stop the anxiety before that third Friday each time!

There is still no sign of my hair falling out and I am secretly fantasising that I may be THE one in a million who doesn't lose their hair, but I know it will happen in the next two weeks; to be honest it won't be painful so at this stage, I don't care that it will fall out; as long as it doesn't feel like Saturday....

We are in the process of decorating the new sewing room today so we will be working on some fabric canvasses to hang on the wall and in the next couple of days, my new hobby room will be complete and I'll post some pics.....

Stay tuned.... I am working on securing a 'guest' blogger this week which I'm sure will arouse great interest!

Post My Very First Chemo Treatment

I have learnt a very important life lesson over the past 36 hours; I can no longer take my health for granted ever again.

After a relatively painless process of actually getting the chemo inserted into me ( I'm having Adriamycic and Cyclophosphamide for the first four times and Docetaxel for the last four times) I felt relatively positive about the ease of the process.

And then my world came crashing down around me literally with a thud in the middle of that evening. I had heard that many chemo patients do not fully absorb it for a few days so I thought I'd have at least a day up my sleeve to do something nice....

Well that was not the case for me; mine went straight into my blood stream and hit me with a vengeance all night Friday and all day yesterday. I got up at 1.30am to go to the bathroom and have a drink and I was numb with pain! I then woke up at about 6am, came to check my emails and couldn't even muster up the energy to reply to any! I gauged myself with ginger tea and my anti nausea tablets as well as multi vitamins and every other vitamin I could find and went back to bed.

One of the best pieces of advice my oncologist gave me was to drink as much fluid as I possibly could so that I could get these poisons out of my body as fast as possible. I had hit rock bottom and had never felt so nauseous, fatigued, dizzy and generally sick in all of my life (in medical terms I was a zero out of ten). My mind broke down for little while as I was so upset as to how horrible this disease was making me feel for the first time. Surgery was painful but this felt so much worse to me. My darling partner consoled me (as always) and I instantly put it into perspective and just realised I needed to get through the day; as this HAD to be the worst of it.

I woke at about 11.30am and felt a little better. I got up and had some avocado on toast and some more fluids, which made me feel instantly better (to about a one out of ten but that was good).

I had a shower and I was determined to see if I could go for a walk as I thought the fresh air would help me feel better too, so Matty and I went down to the waterfront at Sandgate and went for a short walk; I actually felt pretty good walking in the sunshine and fresh air (with one of my new hats as you cannot have too much sun during chemo). By the end, I was exhausted and we came home and I went straight to bed and slept all afternoon. I woke at about 4.30pm when Mum visited and dropped off some dinner and some new sewing bits (thanks ma!!) and then went back to bed at 6pm.....

So that is a summary of what I will refer to as my first day of hell. BUT I'm so so pleased to say that after my day of rest and drinking lots of fluids (I went to the bathroom no less than eight times during the night) I feel SO much better today. I'm about a five out of ten today but compared to yesterday, I feel like a million dollars! So I'm praying that yesterday was the worst of it and while I'm likely to feel fatigued over the coming weeks, I hope that I don't feel that sickness again until next round (I will be making the most of every day I feel ok that's for sure!).

In the words of Lance Armstrong, Pain is temporaray, quitting is permanent! While I had the shock of my life yesterday as to how depleted one can feel (remembering that I rarely get sick so I probably have a very low pain threshold to begin with) if I have one bad day like yesterday for seven more rounds, I will be ok as I know how to manage it - lots of goodness, rest and fluids....and attention from my lovely partner and family!

I still haven't fully realised why I have been put on this journey yet but I am sure of one thing. I will come out the other end very strong and confident in my ability to tackle life challenges and I will never take the life of myself or anyone else around me for granted. One of the things that got me through yesterday without a doubt were all the wishes, messages, thoughts and love that have completely overwhelmed me over the past few weeks. They all felt so powerful yesterday and I know they will continue to give me a lot of strength and positive energy; a necessity for beating this rotten disease. I thank each and every person who has taken the time to get in touch and send me your heartfelt messages; they have made a difference. They have truly warmed my heart.

Onwards and upwards from here..... one treatment down, seven to go!

Just Before My First Chemo Treatment

Well I woke this morning feeling like in one respect, that this was going to be the last day of feeling good for a very long time..... but I also felt that at the end of the day I would be one down, seven to go.... and one step closer to ridding this aweful disease from my body!

I kept myself busy today and we went for a nice walk before my afternoon appnt at The Wesley. I made another hat this morning and read quite a bit (I'm so close to finishing The Girl with the Dragon Tattoo) so the morning went quite quickly.

I now have a sewing room..... Matty and I purchased an old style table yesterday and we have sanded it back and painted it with a limewash finish and it looks fabulous in our room. I was also very spoilt yesterday when my lovely parents arrived with a new flash sewing machine (which looks far too high tech for me at the moment!!) to sit on my table, so it was very exciting that I now have a hobby room.... I have found that even on the days when I feel tired, there is always something I can do in sewing, but I think I'm going to have to divert away from hats fairly soon as I can imagine they will bore me in a few weeks time! (but if you would like one, let me know!!)

So I have just arrived home from my first chemo session. I was really scared and anxious about it and didn't really know what to expect. The first thing that hit me was all of the old bald people in there having their treatment.... oh god, I'm going to look like that next month!!! (but i didn't see any fabulous head scarves!)

The treatment went for about 4 hours today. They take a blood test first and get the results back from that - approx 30mins, then I took an anti nausia drug and had to wait for one hour until they put the chemo drugs into me..... so after the long wait, they began putting them in.... I could feel them instantly and they sent a warm feeling through my arm.... I had signs of feeling a bit dizzy by the time it was finished.... but now that I'm home, it feels like a normal friday evening - I feel a bit light headed from a few glasses of champas!!!! But obviously I haven't had the champas (boy I wish I had!). But if these toxins make me feel like I've had a few glasses, I think they will become my good friend! On a serious not, I have been advised to drink plenty of liquids to get the poison out of my body as quickly as possible (we are thinking of having an all night movie party so I can stay up and drink water!!!)

While we were sitting there, we were givin all of these forms which explain all of the side effects of chemo - that makes depressing reading let me tell you!! The lovely nurse offered to put a Chemo DVD on for me to which I kindly declined..... I figure I will find out myself soon enough and I want to talk happy things for as many moments in my life until I'm physically or mentally unable to....

Thank you for all of your wishes and thoughts which are continuing to flood in. I love receiving your calls, messages and emails, Please do forgive me if I am not great at responding to calls/messages over the next few days as I am not sure how I will be feeling so we are very much taking each day as it comes right now.

So I have completed chemo Number 1! This is all about getting to the end so now that it has begun, the countdown is on...... the next stage is hair loss.... did I say last week that hair was overrated?? I didn't mean that actually......because the reality has hit me today I will lose my hair and that really saddens me.....

Keeping my brain active

It is very true that I am terrible at relaxing and/or sitting still. My darling partner has commented that it has been a full time job ensuring that I don't do anything (not actually doing everything for me!!) as my natural tendancy is to keep active!

So I put my thinking cap on last week about things that I could possibly entertain myself with aside from reading, walking, playing board games and of course chatting to my fabulous friends! AND I came up with the idea of experimenting with making my own hats...... (I haven't used a sewing machine since I was at school and while I have great vision when it comes to fashion, I have no drawing skills and am quite impatient; this was going to be a great challenge for me!). Before I knew it, Mum was over with the sewing machine and I was all set to go!

My lovely best friend Joey came down on the week end (she is highly qualified at all of the things I'm hopeless at e.g. cooking and sewing) and I had purchased some patterns (that is a story in itself trying to figure out where the patterns were and how you actually interpret them; all with the help of my partner!). I have to say that I had very low expectations of myself; knowing that this would not come naturally to me!

Joey was so patient and she taught me so much in just a few hours. We made two hats together (she did most of the sewing actually) and guess what? They actually look like the photo!! AND when she left, I was able to make one all on my own (the black one). I know you will all be curious to see them, so here is a pic below:

They are not quite up to 'Alannah' standard but it was a great fun way to keep busy and occupied. We also purchased some beautiful fabrics to make some more (this is the experimenting fabric) so I'm excited about this new found hobby; and huge thanks to Joey for your patience and help in creating something that I'm really happy with! You brightened up my day and made me feel so happy!!

Egg Pick Up Day

Well today marks the end of a fairly easy process for us. As there is a chance I may become post menopausal after chemo, we were advised to ensure that we cover all bases for having children a little further down the track; something which I recommend all women think about seriously. I have learnt that as a 35 year old, the natural birth rate for me was only 29%! So we are pleased to have gone through the process (it is very easy compared to surgery!).

We have completed a long week of self injections - up to three per day, so I can now say that I have well and truly conquered my needle phobia! I was so excited to complete my final injections and my poor tummy is very bruised; but aside from that, it's a small price to pay and we are now guaranteed of being able to have children.....(and I have completely surprised myself as on day one of self injections, I thought I was going to pass out!)

We had a great team looking after us at Queensland Fertility Group and we had quite a few laughs with our excellent specialist; who was an absolute crack up..... I won't go into details of that but he came out with some hilarious comments!!! In addition though, they have been extremely kind and caring, so they have made it as easy as possible for us.

I also heard late yesterday that chemo will now start on Friday afternoon.... so we have one extra day to prepare ourselves!

Hair IS overrated - preparing to lose my curly locks.

With chemo to begin in less than one week, I'm now preparing for the two side effects which my oncologist says will be most apparent; fatigue and hair loss!

While I'm not going to be able to control my fatigue levels, I am going to think back to all of the mornings whereby I have awoken and been so tired, I have thought " I cannot possibly do a run this morning".... and guess what? After an argument with the sheets, I pull myself out of bed and I'm at the gym 10mins later running..... and I feel good! This is the mindset I will adopt from here on in(bearing in mind there may be days where it's actually not possible to get out of bed for a run or I may have to reside to a walk instead). But every one of us feels tired early in the mornings and I know that when I nudge myself, it always makes me feel so good!

I'm not quite up to getting back into the gym yet after surgery however, we have been walking the surrounding hills for an hour each day, so I am feeling pretty ok. I am hoping to get back into the gym to do a couple of runs this week before chemo as I know that will make me feel positive and fit.

Approximately one week after each chemo session (there will be eight in total), my white blood cells will be extremely low, so I need to be very careful about hygeine and physical environments.... apparently a sniffle can tranform into a life threatening situation, so this will be really important to be aware of.

As for the hair loss, my Alannah headscarves arrived on Friday evening, along with some beautiful hats which my big sis purchased for me in NZ (thanks shelly bells!); I was so excited, it felt like Xmas all over! My Alannah scarves are so fabulous that I'm now actually looking forward to wearing them!

My gorgeous and kind hairdresser has offered to come to our house and shave my head, which is something I decided to do a while ago (thanks emma!). I think it will be far less traumatic for me and we are going to keep the hair and one of our friends will make a porcelain doll using my hair with it; how beautiful! I have been informed that your hair may grow back completely differently. My nurse actually scared me when she said it may grow back red and straight! (I am hoping it comes back blonde and curly obviously). I don't feel that I need to reinvent myself just yet...

My collection is looking pretty darned gorgeous actually and I have hats/scarves for all occasions; even for swimming at the beach and bedtime.

AND I'm thinking about how much less time it will take me to get ready in the bathroom each day! I will park my comb which has been with me since I was about 12 and literally travelled the world with me. I will also temporarily part ways with my hairdryer; something which also comes everywhere with me.... AND I will have more space in my suitcase for shopping when we do go away on hols; how exciting!

We did go wig shopping a couple of weeks ago.... I was informed Starkles is the place to go.... I tried on a few different options but I found it difficult because as soon as the lady saw me ( she was very sweet), she said that no matter what I have, it will look completely different to how I look now as there is no wig similar to my hair. I quite liked a short blonde style, however as I still had my hair, I couldn't escape the feeling that I was getting ready for a fancy dress party!! So it was a bit too weird as I felt like a completely different person, so I have decided to wait until I lose all of my hair and then reconsider the options. (I also have nightmares about it blowing off my head on a windy day!!).

So I have come to the conclusion that who actually needs hair and how many women have the opportunity to get away with shaving their head in their life?? It may even feel liberating....particularly in our warm climate! And as everyone says Sinead O'Connor looked gorgeous with a shaved head (I'm not sure I will have the perfect round mound that she had!).

So I have accepted that losing my hair will provide new opportunities for me but I also know deep down that I will be VERY excited about the day it begins to grow back which will be around January 2011.... (please god, don't let it come back red and straight!)

Before Chemo

Well we met with my oncologist for the first time last night (since meeting in hospital) who explained the follow up treatment with us. Now, I have been doing a bit of my own research about chemo and there are some complete horror stories out there. I have also just finished Lance Armstrong's cancer story.... if you haven't read it, he had chemo in the first instance which did not affect him at all. He was up riding 300kms the next day and did not feel any side effects at all... he then went on to have the 'horror story' chemo which would scare anyone with cancer as it completely knocked him out for months on end..... there was no exercise at all and he could barely leave the house! Now I would never like to compare my physical being to that of Lance's (yes 7km runs do not compare to the 'Tour'!!), however, I have been thinking that I definately want to be in the first camp, not the latter!

So I have been given my drug treatment and my lovely oncologist has explained everything to me in great detail. I can tell he is a very kind man who is positive (which I loved) but he was also very honest in explaining what is going to happen to me; something which I really appreciated. 

One of the things that I have struggled with this week is deciding whether or not to research and find out more about the unknown... I have had conversations with former breast cancer patients and carried out some internet research and while some of the info is very useful, it can also be a very scary thing to read some of the horror stories associated with chemo..... after scaring myself this week, I have now decided that I simply need to wait and see how I respond to it.

So with my drug treatment, the biggest side effects are fatigue and hair loss. Everyone deals with treatment differently but it was explained that there is no doubt that my youth and health will stand me in good stead; that is what I wanted to hear!!!

I have clearly resolved the hair loss issue; oh I forgot to tell you that I received my first ebay hat yesterday; it was 99c and it's actually quite nice... it won't be seen on the catwalk or at work but it will be a comfy little weekend hat; and for 99c I only need to wear it once! A good bargain for a new hat (I forgot to mention they charge $10 for postage but it's still a bargain!).

So my programme is yet to be confirmed however the oncologist is happy for me to start chemo next week. It is a public holiday on Wed so I will most likely start on Thursday. Feeling quite scared about it which I think is natural. I will be continuing the journey into unknown territory but I am content with knowing more about it and am pleased that I am 'moving forward' (in the words of our PM; sorry Julia, I couldn't resist!).

Finally; thank you for your overwhelming response to my journey; it has given me great strength and warmed my heart.

What you can do to help

Well, as you know I have been completely overwhelmed by the so many inspirational, positive and hopeful messages that I have received over the past few weeks; each and every one of them has brightened up my day, so thank you to all of my wonderful friends and family.

So many of my friends are asking if they can do anything for us right now.... isn't that so great; I mean I have never had so many people fussing over me before; I feel so so loved!

While I have LOVED all the flowers that have arrived, a close second is all of the text messages, emails, conversations and visits I have had in the past week. The biggest thing that is keeping me feeling so positive are these encouraging thoughts and wishes. I know it may sound so simple but there is nothing better right now (apart from receiving my new hat collection in the post of course!!) than being able to read all of the wonderfully inspirational messages I have received.

So if you are wondering what to do, then just call, text, email and keep sending your positive thoughts to your loved one; they mean so so much during this time and they are so gratefully received!

It's times like these when you realise how many generous, loving and kind hearted people in the world and I am so happy to be surrounded by them; so thank you if you are one of them to me! xx

The Opportunity - building your hat/scarf collection

Now, many of my friends know that I LOVE shopping and I take my wardrobe very seriously..... so now, instead of getting up each morning, washing my hair, blowdrying it, putting lots of conditioners etc into it, I will spend this time 'dressing my head'.

I began by searching the internet for hats/scarves..... now we always knew it would be challenging to live up to my expectations but it was grim..... I felt really depressed!!! What was going to compliment my Alannah Hill wardrobe???

So I decided to take matters into my own hands. I emailed Alannah Hill and explained my situation. I asked whether they would have any previous summer/spring hats in their head office that I could purchase from them directly. The marketing manager wrote back to me instantly. She explained that they have just done a photo shoot for the new season's collection in which they featured head scarves.... oh my god, I was sooooo excited! I replied and said I would love to purchase them from her to which she wrote back the next day to say that Alannah would love to give them to me; as a gift! This made my day, my week!!! I was going to be the new owner of a limited edition headscarf collection all designed by Alannah Hill. I felt honoured!

It has been encounters like this that have really touched me. I was so appreciative of this amazing generousity from Alannah Hill and from all of my friends and contacts from everywhere. That said, I have six -12 months of headwear to collect, so I still had to keep shopping.....

I hope this list of contacts will save you some time. Here are the best websites I have come across to purchase new headwear to date....

http://www.headcovers.com/ - I had a selection of hats delivered from here; some were really great and others were disappointing.

http://www.alannahhill.com.au/ - there is not a big selection on her website but the hats in her store are simply gorgeous. Perfect for special occasions and work.

http://www.bestwigoutlet.com/ - you have to search through this site but there are a couple of little gems

http://www.ebay.com.au/ - there is a surprising number of new hats, particularly that are shipped from Hong Kong; some very cheap, casual hats on offer. I had never been an ebay fan before now.... they are all new and you can purchase for up to $3! They are the same as hats you would purchase in DJ's for $30!

http://www.internationalwig.com/default.asp - again you need to search hard, but there are a couple of great hats on here

http://shop.nordstrom.com/?origin=tab-logo - some great designer hats but they charge a lot of shipping. If you purchase, buy a few to make the shipping costs worthwhile.

http://www.tlcdirect.org/products/sku-7707__dept-23.html - this sleep cap is quite beautiful but I haven't purchased it.... yet!!

http://www.hatsinthebelfry.com/ - I haven't purchased from here yet but the cloche hats are quite beautiful for dressy occasions.

http://www.hatsandhair.co.uk/christineheadwearcollection - I love the scarf and ribbon combo

http://www.etsy.com/shop/annmag?section_id=5104608&page=2 - some very cute handmade winter hats

Dealing with the emotions

As someone who is not a very outwardly emotional person, I have cried more in the past three weeks than throughout my entire life! To begin with, I could not fathom this was happening to me... why me.... what could I have done....this is going to ruin my career and my life..... and a million other negative thoughts. But I realised one thing very quickly. I was overwhelmed with love and support from my friends, family, colleagues and people I have met all over the world. The response was instant and I immediately drew strength from the words of encouragement and positivity to begin telling myself 'I can get through this'.

At first, I remember being so upset that I felt like my heart had been broken. Nothing has ever reduced me to level of devastation I felt. I was gutted. I have had an amazing life where everything has gone so right. I have travelled, I have great friends and family and I have such a beautiful partner, this just didn't seem fair! I felt like this for about 1-2 days. Then things started to change.

Everyone was so supportive and I decided to take a big picture look at my life. Yes, I had been blessed with pretty well much a perfect life, but maybe this was going to be part of that journey.... maybe this was going to MAKE me slow down, smell the roses and rediscover all of the wonderful people and things I have in my life. Maybe this was going to present an opportunity.... and to this day, I feel that I have been put in this position for a reason. To learn more about myself, what's important to me and my life and to unlock the emotions that I have not drawn upon for a long time.

This is my chance rediscovery!!!

My full results

On the last morning in hospital, I met my oncologist who gave me the results. They were not so great. The main tumor was in fact over 7cms (they thought it was only 3cms) and there were two-three other tumors. It was also discovered that I had cancer in 11 of my 22 lymph glands, so it is likely that while my full bone scans have come back clear, that there may be micro cells in my body which cannot be detected from today's technology. While I expected this result, I was still shocked....

The oncologist (who was amazingly empathetic while explaining this to me) told me that the only way for me to be cancer free forever is to have chemotherapy. This was devastating news! I have heard a lot about chemo and the side effects and I was particularly distraught at losing my hair (I have light blonde naturally curly hair which is a very distinguishable feature of me). I was informed that after my first chemo treatment, my hair would fall out within about 3 days approximately two weeks after that treatment...... oh no what will I do!!!

To be honest, I wasn't so worried about the side effects. I am young and I am hoping this holds me in good stead when it happens and that I'll be able to ride through it. I was worried about looking like a sickly, pale person that everyone would stare at wherever she went! The other major drawback was that there is a one in three chance that I may become post menapausal; something I definately did not want to happen.

He then proceeded to inform me that I will then need radiation treatment which will follow the chemo. So this is a longer journey that I expected but one that I know I can conquer; with all of the love and support I have surrounding me, how can I possibly fail at this?!

Post Surgery - What it is like

I was informed by my surgeon that the surgery is not a very painful one, so I expected to come home and feel pretty ok instantly. I personally found the reality very different.

The day I arrived home from hospital, I felt on top of the world. Smelling the fresh air and the garden and leaving hospital for our beautiful home was such a wonderful feeling. I was free!! We had so many bouquets of flowers, our house literally resembled a florist and each and every bouquet I received brightened up my day just a little bit more.

Since the day I got home, I have been going for daily walks; not very long walks but we started going around the block and have increased it gradually from there. Exercise (light walking) has really helped me to feel positive and it has been a great opportunity for my partner and I to get out and chat about things and enjoy the simple things in life like fresh air.

My chest area has been quite painful. For the first week and a half,  all of the sensations and tenderness was much more painful that I envisaged. As I had a full mastectomy and axillary clearance, I think it has awakened the nerves under my arms a lot more than just a mastectomy but I felt quite a strong throbbing pain for days when I returned home. I have found it very hard to sit still so my partner insisted that I keep as still as possible and rest up, to see if that made a difference.

So I rested and rested...... in between playing lots of board games, (which have become the highlight of my days!!!) writing my journal (I have two others), reading books (including Lance Armstrong's journey with cancer) and being determined not to get lured into viewing daytime TV (sorry Oprah!).

I would receive daily gifts; gifts from friends and gifts from the Breast Cancer Network Australia. I received the 'My Journey' kit which I have found invaluable. I love the journal which really helps to keep everything together as we now have loads of appointments to organise and attend to. I also received a fabulous new Berlei bra and prosthesis, which again brought a big smile to my face.

I think it's really important to keep busy but while having a good balance of rest. I've had so many visits from friends and some days, I haven't felt like visits and I have been open with our friends and they completely understand.

Give yourself two weeks to feel better. Your body needs time to rest and while the pain may be unbearable at times, just lie down and read a book and try not to think about it. I had what looked like a big golf ball under my arm but after a couple of days of rest, it has gone down a lot and my surgeon will drain any excess fluid in my weekly visit to him.

I am now feeling quite good (still pretty tender) and hey, it's a great opportunity to get really pampered and looked after.... my partner has become the housewife and I think secretly, he's loving it!!!!

My message to all young women

As I write about this journey three weeks into it, I still cannot rationalise that I have breast cancer. I have been feeling absolutely fine. I am a high energy person who has religiously exercised almost every day for the past 15 years and I am very conscious about living a healthy lifestyle. And now that I'm recovering from surgery, I find it hard to take that I am now suffering all this pain when I have never felt ill in the first place.

Never in a million years would I have ever suspected or known that I have breast cancer. I had never had my breasts checked; in fact I like so many other 20 and 30 year old women, didn't even realise I needed to have my breasts checked. I lived in London for over seven years, where GPs do not carry out checks on women under 40 years. In fact, I was completely surprised when my GP said she was going to check my breasts as I had never heard of 30 year old women checking their breasts!

Luckily she did as I realise that this could have been far worse if she hadn't have discovered the lump. When she pointed out the lump (which was not visible) I could feel it and it was big... but I had never felt it myself, nor had my partner.

To this day, I would have thought that surely I would feel some symptoms of illness; afterall this is cancer; a life threatening illness! It must make you feel something....... the reality is that it doesn't. I ran 7kms the day before I went into surgery; that is how great I was feeling.

So if you are in your 30's or even 20's and reading this, PLEASE go and have a breast check as soon as possible. It may save your life....

Surgery

Before I knew it, was sitting in the hospital reception area waiting to be admitted for surgery. I was completely and utterly terrified about what lay ahead. My parents, sister and partner were there with me and we were all making small talk to help pass the time a bit quicker.

Shortly afterwards, I was taken up to the waiting room and dressed in one of those stunning fashionable gowns (a long way from my usual stylish Alannah Hill wardrobe) and given a bed in another waiting area. I said goodbye to my partner (feeling numb) and got wheeled through to the next waiting room.

It was here that everything hit me.... this was the last time I was going to have two breasts, it was the last time I was going to be normal, I had left work so suddenly, I HAD BREAST CANCER. I started crying and could not stop. Thankfully, one of the astute nurses spotted I was upset and brought over a box of Kleenex. I finished it soon after!!! I just needed to be put out and as soon as possible.

I barely remember going into the theatre and the next I rememember was looking at my partner and being wheeled through the narrow corridors of the hospital and into my room.

When I came round, I instantly felt pain. I was basically chained to the bed with drips, drains and leg pumps to ensure that I don't get a blood clot, so I felt like I was in a straight jacket!

I was in hospital for four days and while the pain wasn't excruciating, it wasn't overly pleasant. My sister had flown over from NZ and was regularly visiting with my partner, parents and friends..... so I had a pretty full schedule really and with all of the visitors, it was a great way to forget the pain!

I left the hospital at the end of the four day period.... stepped outside into the fresh air for the first time all week and was standing there for no longer than two minutes and the unbelievable happened....a bird pooped on my head!!! But it was very kind in that it missed my hair (which took significant energy to wash with one arm!!) and got my white headband..... I knew someone was looking down on me and that I was going to be ok....

What does breast cancer mean - the verdict

The day after I was told I have breast cancer, I met with my GP who was extremely compassionate and who has been calling me regularly to see how I am doing. She referred me to a surgeon who I was lucky to meet that evening.


At this point, my body was numb with anxiety and terror. I had barely visited a hospital, rarely got sick and was aware that the mere sight of needles makes my stomach crawl! I did have a sleepless night the evening before and I did what many people warn you not to do; got up in the middle of the night and researched breast cancer on the internet..... in hindsight I am pleased that I did it because I had been given some very technical terms from the specialist e.g. multi focal and didn't know what they meant. While the readings were quite horrific, I got an indication that this was very serious and that serious immediate action needed to happen.

The overwhelming feeling was one of shock. How could this possibly happen to me? I'm only 35 years old and have been feeling absolutely no symptoms of illness whatsoever. I had been going to the gym every day, running and doing high energy activity and feeling great! I was really excited about what was happening at work as all of the great projects we had been working on were coming to fruition starting this week end. Everything was great with my partner, so I was feeling on top of the world. I soon realised that I was going to be moving into unknown territory and this was a very daunting thought!

My mum, my partner and I met with my surgeon, (who was lovely) that evening. He gave me the news that the only way to treat this was to have a mastectomy and complete axillary clearance; oh my god, this was too much to fathom..... I was completely and utterly devastated for the first time in my life.....and it was happening in one week's time!

My amazing friends

The day after it was confirmed I had breast cancer, I started calling my close friends. I was inconsolable and so visibly upset, that they too could not believe the news. I personally found it extremely difficult to tell my close friends. They were so upset with me, so many of them crying on the phone with me and it hit home how many wonderful friends and people I have in my life.

While my friends were in complete shock, the overwhelming response was;

"Suse, you are strong and a fighter. You will be ok with this and you can fight it. If anyone can do it, you can!"

I heard these words over and over again and it then started to change my feelings towards this ordeal. One of my best friends travelled for over two hours to visit me a couple of evening's later after a full day of teaching and she said

"Who cares about your breast. They don't define you  and your personality. No one cares if you don't have a breast. We just want you to live and be a part of our lives"

Those words meant the world to me (thanks Joey!). My partner is the most amazing man, who has been so supportive and loving and he too did not care in the least if I have one breast. This was a big step for me to realise that it's beneath the surface that counts and that losing a breast was not the worst thing in the world that could happen.

The flowers, wishes, presents and cards came pouring in from everywhere. I was completely overwhelmed with the level of love and support around me and to this day, I thank each and every one of my beautiful friends and family for their love and support.

Telling my family

It had just been confirmed that I have multi focal breast cancer. Not knowing much about the disease, I didn't really appreciate what was ahead. But first I had to tell my family and partner.

I called my partner on the way home from work to tell him the news had just come in. I was feeling so shocked and I was crying and crying.... I asked him to invite my parents around straight away so they would all be there when I arrived.

When I got in, my parents arrived soon after and I told them the news that I had cancer. We were all so devastated and the room was filled with tears and at that point, I wished that the GP had never found it. I was so distraught. How dare something so life changing enter my life so quickly and destroy the amazing life I've had for the past 35 years.....

I spoke to my sister in NZ who was also completely devastated and in shock.

At this point, I didn't know how I was going to get through this terrifying ordeal. It was so much bigger than anything I had ever encountered!

Receiving life changing news

I have never imagined myself to be someone who would ever receive life changing news; I mean, you read about these stories all the time and you empathise with people who are going through traumas, however you never really understand what they are going through until it happens to you.

Just over three weeks ago, I went to see a GP for my annual doctor visit. The main purpose of my visit was to fulfill an annual prescription, so you can imagine the surprise I got when the GP insisted on doing a breast check; something I have never been offered nor had before. The GP found a lump and asked me to get it checked out as soon as I can.

Two days later, I was at a specialist having a mammogram (and oh yes, they are as awkward as everyone says they are!), ultra sound and then biopsies. I had ducked out of the office believing I was going to be one hour. So focused on getting back to the office within the hour, I realised it was going to take much longer than the hour I envisaged when two hours later, the specialist didn't even look like letting me go! I had no idea what was going through her mind.....I cleared my meetings for the rest of that day.

After all of the needles and prodding (yes I felt like a pin cushion!) I decided to ask the specialist a few more questions. After asking her once innocent question, I got this response;

"Susie, what we are seeing here today is extremely worrying to us which is why we are being so agressive with you today. You have abnormalities that we can see, which are not in line with benign tumours and there is a high chance that when we receive the results tomorrow, it will be confirmed that you have breast cancer"

I was stunned and lost for words. What, how, why...... what does this mean?
The results were confirmed the following day (after I spent the day in the office convincing myself this couldn't be possible) that I had multi focal breast cancer. I broke down and felt like my entire world had come crashing down on top of me....

This was the beginning of what I didn't realise would become a life changing journey for me....