Wednesday, 22 August 2012

Second chance

I'm stuck for words (a first for me!) as to how I should start this blog post.  This whole journey has sparked so many emotions, too many to list and this past week has been no exception.  In fact it has probably been one of the toughest, since receiving my diagnosis.  Much earlier in the year (and in line with the D-Care trial I am involved with), I was notified that my CT scan and Bone scan would take place on Monday 20th August.  Initially this seemed like a long time away so I didn't ponder the idea too much and just got on with enjoying life.

As the months turned into weeks and the weeks into days, I started to become more and more anxious.  The idea of having scans, triggers many emotions for me.  My last scans were performed a few days after receiving my breast cancer diagnosis (14 months ago) and I just have so many negative associations with this time.  Just the idea of walking back into the same rooms with the same noises, same smells, same doctors triggers so many difficult emotions - it really is hard to describe.   

Thankfully by the time the actual 'scan' day arrived I was able to keep my emotions in check.  I felt like I was on autopilot!  I was there to do a job and was trying to remain as positive and upbeat as possible.  Ryan spent the day with me and we enjoyed a nice lunch in the city in between scans.  I was very relieved when I arrived home that evening and was quietly hoping Wednesday would bring me the results I had been hoping for.  Unfortunately due to all of the radioactive fluid that was injected into my system for the scans, I was not able to kiss my girls, cuddle them or let them get too close to me that evening which made me sad, especially after such a big day.

The following day (Tuesday) was to be another emotional day for myself and Ryan.  Earlier the previous week, Ryan's beloved Nan passed away at the age of 89.  She was a really wonderful woman and treated me as one of her own grandchildren.  Her funeral was held yesterday and was a beautiful celebration of her amazing life.  She was a very much loved Nan and we will all miss her so much.  Not long after my diagnosis last year she gave me a beautiful little bluebird ornament that she said would bring me good luck.  It is always taken with me (in my handbag) and I will treasure it even more so now.  

This brings me back to today!  My appointment with my Oncologist was at 2.30pm and it honestly couldn't have come any quicker - I was so eager to find out the results.  She greeted us with a big smile so I assumed the news must be good.  My bone scan came back with 'no obvious aggressive bony lesions' and my CT scan showed 'no evidence of metastatic disease'.  In simple terms, this means no spread of cancer to other parts of the body.  What  a relief!!!!!!!!!!!  You honestly couldn't wipe the smile off my face.  It was the exact response I had been hoping for.  Of course there is always that sickening feeling of recurrence but I will just try to keep going and remain as positive as ever.  My Oncologist (whilst very happy with these results), reminded us that she won't say that I am 'cancer free' until I am 10 years post diagnosis with my age being a huge factor.  There is always that chance it may return down the track but I plan on proving that I will live a very happy and healthy life until I am at least 89 - following in Nan's footsteps!

Wow - this past week really has been rather crazy.  Last Friday I received a call from Genetics WA to advise that after 6 months, my gene test results had been finalised.  My result came back as 'Inconclusive' to the BRCA1 or BRCA2 gene.  To tell you the truth I still don't know how I feel about this.  To give you some background the outcome is only ever positive or inconclusive (never negative).  The reason for this is that whilst I may not have the faulty BRCA1 or BRCA2 gene, I may very well have another faulty gene that has not yet been recognised, hence being inconclusive.  Whilst I am relieved I don't have either of these faulty genes, I am also a little disappointed.  I know that seems ridiculous but I suppose for me, if I had been 'positive' to one of the genes it would have been the answer as to why I was diagnosed with breast cancer and more importantly why I was diagnosed at such young age.    Now I am left with the feeling of 'why me' - not in the sense of 'poor me' but more in relation to 'what did I do differently' or 'was it something I didn't do', etc.  There will forever be a question mark.  On the positive, I am thankful that my daughters will most likely not have this gene either.

Over the past few months I have been slowly trying to clean up my act.  It is a definite work in progress but we are getting there slowly but surely.  I have been trying to eliminate all (or at least most) of the chemicals in my life - everything from products in the shower (shampoo, conditioner, soap, etc) to facial products (moisturisers, make up, toothpaste) and then onto such things as dishwashing liquid, window cleaner, etc.  The chemicals in our lives are never-ending.... it's frightening!

I continue to attend my wonderful support group and will be travelling to Sydney in October (with my pink sister, Rachel) to attend the BCNA National Conference.  Whilst it will only be a brief visit (a couple of days for the conference), I am thrilled to be able to attend and listen to some fantastic guest speakers.  The gala dinner also sounds amazing - right on Sydney Harbour!!

Ironically just days before my scans I attended an informative seminar on 'Fear of Recurrence' at St John of God Hospital, Subiaco.  I found it very helpful and picked up quite a few techniques to deal with negative thoughts and feelings.  For me, the most common thought I have, is associated with the risk of the cancer returning.  Most of the time I can deal with these feelings but I can't deny that at times the feelings can be overwhelming.  It is at these times that I see cancer as deadly, if not now, then it will happen later. 

Once again, I would like to take this opportunity to thank each and every one of you for all that you have done and continue to do for me and my family.  I am so very thankful for the love and support we receive - we really do have he most amazing support crew and we love you all very much.  I know that Nan would be having a glass of champagne for me right now!

My girls are tucked in their beds fast asleep tonight and I am so thankful they are the age they are.  They have been so resilient throughout this journey and I hope they never have to endure what I have been through.  I had to laugh this afternoon when I gave Jaz a big hug and told her I had some exciting news; that there was no more cancer in Mum's body.  I then burst into tears (out of sheer relief I think!) and she responded with 'does that mean they gave your boobie back?'  I thought this was very sweet :)  The poor thing must have been so confused though as she went on to ask why I was crying if I had such exciting news.

I feel like tonight is the start of my 'new life'... my 2nd chance so to speak.  First on the agenda is planning another girls trip with my sis - I am thinking Singapore this time!!


Sunday, 17 June 2012

Breast Cancer - one year on....

This week marks a very big anniversary in my life - one year on from my breast cancer diagnosis.  I still remember the phone conversation I had with my doctor exactly one year ago, like it was yesterday.  The first thing she asked was if anyone was home with me and I knew then that the news wasn't going to be good.  In reflection the past 12 months has been the most challenging of my life - physically, emotionally and mentally.  In another sense, it has also been the most rewarding.  My family and friends have always been important to me but I have come to appreciate that they really are the be all and end all in life - nothing seems worthwhile without them.  I have also made some special friends through this journey that I never would have had the chance to meet otherwise and I am so grateful for this.

Isn't this so strange; I woke up yesterday morning with my stomach churning - exactly the feeling I was experiencing this time last year when I was eagerly awaiting my test results.  I also just happened to look up at the clock at 3.20pm and recall this was the time, exactly 12 months ago where I was trying to call Ryan and my family to let them know the news. It was quite strange for me to be doing this as it is the same thing I (and probably all other mothers out there) do on my girls birthdays. Look at the clock and think, been in labour for 1, 3, 5 hours now. Then obviously at the exact time one of my girls was born. Was odd to be doing the same thing but thinking of the day I was told I had breast cancer.

I see it fitting that I update everyone on my 1 year anniversary.  My last blog entry was posted in January 2012 when I had completed my final radiation appointment, this marking the end of my treatment, hopefully forever.  Thankfully it didn't take too long to recover from the radiation but it was extremely important I kept covered up from the sun during the summer months.  This may sound like a reasonably easy thing to do, but we love the beach and I found this very difficult and frustrating at times!  The skin on my chest and under my arm is looking really good now although the 'tan' I have from the radiation is still very obvious.  

Since finishing my treatment, I have been keeping myself busy both with work and socially.  I tried to work as much as I could during my treatment which was a really nice distraction and kept things as normal as possible.  However I decided earlier this year to reduce my workload from 3 days a week to 2 days a week and I will continue to do this until Baylee is full time at school.  I love what I do and am so grateful for my wonderful (and flexible) bosses and work friends - they are amazing!

The past few months has seen me research the ways of improving my immune system.  This may seem trivial to most of you but there must have been a time in my life, a trigger, where the cells in my body became cancerous and my immune system was not able to fight them off.  Many believe diet and nutrition play a huge part, along with getting adequate sleep each night, regular exercise and minimising stress. I have also been looking at all the beauty products I use, from shampoo and conditioner to toothpaste and moisturisers, and have switched nearly all of them to organic brands. Green tea has also become my new favourite drink (it has so many wonderful qualities) which is a far cry from 12 months ago when I used to enjoy a DC on the rocks (diet coke!) every now and then. I haven't touched one since receiving my diagnosis!

Unfortunately, despite my attempts to rebuild my immune system I have still picked up a number of colds and sinus infections.  Only 4 weeks ago I came down with a sinus infection which needed antibiotics to clear up (I was really trying to avoid taking antibiotics so was a little disappointed when I was prescribed them).  It was around this time that I started to experience some pain in my chest, in particular my ribs.  I just put the discomfort down to all of the coughing I was doing in conjunction with the sinus infection.  When this worsened to the point where I was wincing in pain each time I coughed, I raced straight off to the doctor.  I am sure they think I am a bloody hypochondriac but unfortunately this is now reality for me.  Anything that is not quite right needs to be checked without hesitation.  My doctor could easily locate the inflammation (7th rib to be exact!) and I was advised to continue with my antibiotics and to start taking anti-inflammatries to reduce the pain and swelling.  Should it not subside or clear up within 2 - 3 days, I was advised to contact my Oncologist to bring my scans forward.  Must admit, this frightened me but thankfully the pain disappeared and I haven't experienced any discomfort since - phew!

On the topic of scans, I am booked in to have my CT scan and Bone scan on 20th August 2012.  Whilst this is still a good couple of months away, I can't help but feel anxious about it.  It is going to be a long day and will no doubt be very draining.  Unfortunately the worse thing will be the agonising wait before I receive the results - 2 full days!

I met with my Oncologist, Arlene Chan a couple of months ago and we spoke about statistics of recurrence, among other things.  She advised that at this point in my life there is a 33% chance the cancer will return (with the odds improving each year that goes by) and she went on to say that she won't say I am cancer free for at least 10 years.  I really wish she had dropped one of the 3's and just said 3% chance!  Needless to say, it all makes it very real again.  I just have to keep thinking that there is a 66% chance it won't return and please pray and hope that this is the case. 

Well my hair is doing weird and wonderful things.  Weird because I am having to learn how to style short hair (a first!), as well as deal with a wave that has decided to grow (another first!), but wonderful because I have hair again!  My hairdresser and I experimented with a darker colour a few months ago but I really disliked it so we recently coloured it back to my usual blonde which I much prefer!

The next major step in my journey (apart from the big scans in August) is my reconstructive surgery.  As mentioned in a previous blog entry, I have decided to have my left breast removed and a double reconstruction performed.  The main reason for this is a precautionary measure to eliminate the cancer ever returning in my left breast (the odds are far greater now that I have had breast cancer in my right).  I met with a fantastic plastic surgeon, Tony Connell, who specialises in breast reconstructive surgery and I couldn't have been happier with our initial consultation.  He really gave me hope and what I mean by that is the hope to look and feel normal again. I don't want to wear a prothesis for the rest of my life! I wish I could wear beautiful bras and wear young and modern bathers again.  The reconstructive procedure is quite gruelling and is known as latissimus dorsi breast reconstruction.  In a nutshell they will move part of my back muscle and rotate it around to my chest wall (on both sides).  Once the muscle is stitched in place, Tony will insert tissue expanders which will gradually be inflated over a 3 - 4 month period (to 'stretch' the skin).  Following this, the expanders will be removed and permanent implants placed under the muscle.  I am looking at having this done next February.

I am also very mindful that in the next few weeks I could be receiving the results from the gene testing I had done earlier in the year.  I am very anxious about what the result will be but it won't affect my decision in relation to having my other breast removed.  Should the result be positive to BRAC1 or BRCA2, I will seriously consider having a hysterectomy performed as having this gene increases my chance of ovarian cancer too - bloody great!

I continue to attend my support group meetings and really enjoy seeing the girls every month.  They are all so lovely and it gives us a good opportunity to chat about all things that concern, worry and affect us and we sometimes have guest speakers come along.  It is run through Breast Cancer Care WA and they always have a councillor on hand for us should we need them.  Whilst on the topic of Breast Cancer Care WA, this coming Friday 22nd June is Purple Bra Day and it would be wonderful if you could all donate whatever you can to this wonderful cause.  Breast Cancer Care WA is a  charity that provides personalised emotional, practical and financial support and care to people affected by breast cancer.  BCCWA receives no government funding, soley relying on the generosity of the WA community in order to provide its range of services at no charge.  

Earlier in the year, my car acquired a nice new set of pink number plates!  After much deliberation I decided to purchase the plates with the full cost being donated to National Breast Cancer Foundation (NBCF) and I chose the numbers 611 to represent the month and year of my diagnosis.  Needless to say, it is very easy to spot my car in the car park now!

I also would like to thank all of my wonderful friends who sent cards and messages, marking the first anniversary of my diagnosis.  You have all played a part in helping me to  remain positive and giving me a reason to love life and to keep smiling.  

In finishing, I would like to share some photos from our recent trip to Bali.  We had a wonderful time with my parents, my sister Lizzy and her family, Ryan's parents and brother.  This holiday was booked after my 2nd chemo treatment so it was a trip I had been looking forward to for a very long time.  We had an amazing time and it lived up to all expectations!

 Ryan and I with Liz, Steve and Kyle at Ku De Ta (Seminyak, Bali)

Ryan and I enjoying a drink at Potato Head (Seminyak, Bali) 

My little family in the entry foyer of our beautiful hotel (InterContinental, Jimbaran Bay)

Our families enjoying Pre Dinner Drinks at Ku De Ta

Thursday, 26 January 2012

New Beginnings

Everybody wants happiness.  Nobody wants pain.
But you can't have a rainbow, without a little rain.

I did it!!!  After 2 bouts of surgery, 6 rounds of chemo and 25 session of radiation, I did it!!  I am ecstatic to say that I finished all of my treatment on Thursday 12th January 2012 - another date I don't think I will ever forget.  It nearly didn't happen though.  On Monday 9th January I arrived early for my radiation appointment as I wanted to see the nurses prior to the treatment.  My skin was so badly burnt (even more so than the last photo saved on my blog) and I was very concerned about it.  The nurse on duty was lovely but was also very worried about my burns and asked me to go home and return later in the morning - once the doctor had arrived.  I arrived home to Ryan and just burst into tears.  I just couldn't believe  there maybe a chance I would have to stop the treatment when I was only 4 sessions away from the finish line.  Ryan returned with me later that morning and I saw the doctor, who after assessing the burns, was happy for me to continue as long as I was very careful over the next few days.  If it had been any longer than 4 days they definitely would have made me stop and return at a later date.  It was crucial I gave the area regular salt water soaks and used the special prescribed creams to help the area heal but more importantly, to avoid the onset of infection.  I also had to visit the nurses before and after each session for them to dress the burns.  

I can definitely say that I was one of the unlucky ones who burnt quite badly throughout this process.  I found it interesting to hear from the nurses that it is impossible for them to pick exactly who will burn and who won't.  The radiographers were saying that they may have a dark skinned lady burn quite badly one day and the next day a very fair lady who doesn't burn at all! 

I really can't tell you how I felt walking out for the last time - there were so many mixed emotions..... sore, relief, happiness, sadness, etc.  Ryan asked me how I would like to celebrate the end of my treatment and all I really wanted to do was to go down to the beach and enjoy some Moet and this is exactly what we did!  Our wonderful families joined us and it was perfect.

We continued the celebrations by heading down to Busselton for a little camping holiday a couple of days after my last radiation treatment.  We really enjoy camping and we had a fantastic time!  Some lovely friends joined us and Ryan's parents came down for a night also.    The weather was amazing, in fact the first couple of days were really hot so I had to be super careful my burns weren't exposed to the sun in any way.

We arrived home from camping just in time to celebrate our 9th wedding anniversary!  My lovely sister Lizzy came over and looked after our girls whilst we enjoyed an amazing 6 course degustation menu at Fraser's in Kings Park.  It was absolutely fantastic and I highly recommend it!  It was a lovely way to celebrate a year that was definitely one of our hardest and one we will never forget.  I can't thank Ryan enough for absolutely everything he does for me and our girls - he is wonderful!

On Thursday 19th January, I had my 'follow up' consultation with my surgeon, Dr Willsher.  We spoke about my Chemo treatment and radiation and he checked my mastectomy scar and burns.  We then spoke about reconstructive surgery and my decision to have my other breast removed at the time of this surgery.  I really want to try and take the element of risk  away and my surgeon is happy with my decision and supports me all the way (especially due to my age).  I hope to have this done in late July / early August 2012.  I want to give my body a really good rest from all of my treatment before I head back into hospital for more surgery.  It is quite a major operation and I will be in hospital for at least 10 days and will take approx 6 weeks to recover - something I am really not looking forward to.  

Now that all of my treatment is finished, the question I am asked on a regular basis is 'where to from here'?  Unfortunately I won't know if all of my treatment has worked until June 2012.  Exactly 12 months after my diagnosis and 6 months after my treatment, I will need to go and have all of my scans done again.  No doubt this is going to be a tough day and I just hope I am drinking a glass of champagne at the end of it!

Once again I am extremely grateful for everyone's wonderful support and I must thank Hayles & Neil, Lizzy & Stevie and Trace & Darren for the lovely flowers and for Dee & Heath for the beautiful gift box I received on celebrating the end of my treatment. I feel very special - thank you!  

It is a strange and sometimes frightening feeling not having any current treatment.  I am sure some people may think that because I am out of the stages of having treatment, I am fine.  I'm not sure how I feel about this as I'm sure I will still have some sad days now and then.  My support group often speaks about feelings especially when treatment is over.  Treatment is kind of like a safety net - surely nothing can happen to us when on treatment?!

I really want to close this post with a status a friend recently wrote on Facebook (thanks Alsy!) - it perfectly sums up how I feel.

I am a very lucky girl that can quite proudly say if you measure my wealth by how many amazing friendships I have, then I would be a billionaire ten times over!

Ryan and I toasting the end of my 
treatment and new beginnings

Ryan and I celebrating 9 very happy years

Ryan and I at Tami's 30th Birthday 
(wish I had some eyelashes!)

My inspiration - my gorgeous little family at 
Jaz's surf life saving (Scarboro SLS nippers!)

Sunday, 8 January 2012

Burnt to a crisp

I hope you all had a wonderful Christmas with your family and friends and I hope 2012 brings you lots of love, fun and happiness but more importantly I hope it brings you all excellent health!

I was very happy to see 2011 come to an end - in fact, it couldn't come quick enough.  I never in my wildest dreams thought it would turn out the way it did and it certainly did turn my life upside down and inside out!  

Unfortunately my treatment didn't finish in 2011 which is a shame.  It will finish on Thursday 12th January 2012 at 8.15am!  My treatment card was finalised today (showing my very last radiation time) and noted underneath was 'finished - well done!'  Unfortunately though, radiation hasn't been a walk in the park like I thought it might have been (compared to Chemo anyway).  The first few weeks were fine and I thought I might breeze through the treatment but I am doing it tough now.  The burns are horrendous and with 21 sessions complete, part of my skin is like charcoal.  My poor burnt skin is now peeling back to show raw pink skin and it makes me sick to think that tomorrow they will have to perform the 22nd radiation treatment on my raw pink skin.  To say this is going to hurt is going to be an understatement.  I have been doing everything as instructed, following all of the do's and don'ts, so I have just been one of the unlucky ones.  The pain has also been affecting my sleep as I can't roll over on my right side - it is too painful.  I just can't wait for it to all be over.  Bring on Thursday!!!!  Although I am burnt, sore and tired, I will miss my radiographers.  They are all so lovely and made me as comfortable as possible throughout my treatment, however I really hope I never have to see them again - in a medical environment anyway!  WARNING - I have attached a photo of my burns below.

Some good news to come out of my radiation treatment is that I haven't developed Lymphodema which was a big worry for me as I had quite a few problems with my arm during Chemo.  In fact, it seems that radiation has helped with the cording and at the moment you can't see (and I can't feel) any cording in my arm.  It feels great and I haven't had to wear my pressure glove every day.  I will still be having a check up with my Physio just after radiation is finished, but I am feeling good. 

Just prior to Christmas, Ryan commenced 5 weeks of annual leave.  It has been so fantastic having him home with us especially over the Christmas and New Year break.  He primarily took the time off so he could help with the girls whilst I have radiation each day but we have made sure we have been spending lots of quality time together down at the beach, going to the movies, catching up with friends and we have a camping holiday booked for next weekend down in Busselton which we are really looking forward to!

It has now been close to 4 weeks since I started taking Tamoxifen (the drug I need to take every day for the next 5 years) and it seems I have picked up a couple of side effects.  These being; a cough, dizziness and light headedness - lucky me!  Thankfully they aren't affecting my day to day activities but I will need to bring these up with my Surgeon and Oncologist in the coming weeks.

I am very happy to broadcast that my hair has started to grow back - hallelujah!  It would be close to 0.5cm long now, although very thin and whispy, so I will be wearing my scarves and hats for quite some time yet.  I keep telling Ryan the best way to stimulate the hair follicles is with regular head massages but he isn't buying it!  How ironic is this though ...... the day my hair started to grow back, my eyelashes and eyebrows fell out :(  Can you believe it!  I honestly thought I was going to be lucky and not lose them especially as it has been nearly 2 months since my last Chemo session.  Needless to say, not feeling very attractive at the moment!

Well, I best sign off for now and put the bottle of Moet in the fridge to chill for Thursday!

 Christmas Day - 2011

Jasmine and Baylee - 
opening presents on Christmas morning 2011 

Some of my very painful burns - 
after 21 radiotherapy treatments