The post I wrote when the prognosis was bad

It's been four months since the surgery and the scar looks great. There is no more leaking and my ear has even started tingling and so I might get feeling back after all. There is a dip but because it's behind the ear it's not really noticeable. I am feeling great and very blessed.

We are telling our story over and over. I am frequently asked about it. I shared the story at my company staff meeting, it will be published in the local press, John is sharing it as part of his new role with the startup CancerAid. We feel that it's important to share it and it's a great way to remind us of what is important.

So here is the post I had written after we received the new of my diagnosis. We are still thrilled and very grateful that the tumour was benign and will never forget the experience, but I also think it's good to remember how we were feeling and what we were planning to do with limited years - after all a long life is never guaranteed.....

When someone tells you that you have 7 to 12 years to live it's actually quite hard to believe and takes some time to sink in. I'm actually not sure it has entirely.

The things that run through your mind are endless. You think about your husband, your girls, their futures and how you will cope not being there for them and sharing in their lives. You think about things you want to make sure you do with them and for them. You think about death and wonder how you will feel when you get to the other side if you're not ready and not really willing to go. You think about how you are going to get on with all the day to day things when you know it doesn't really matter but still has to be done. You wonder how you are going to send your child to school if she doesn't want to go (hopefully she will) and how you will manage to discipline when all you want to do is hold them and give them everything they want......

It's endless.

And regardless of how you feel and what you think (or are trying not to think) you have to be prepared and you have to do everything you can for them while you can.

These are things that are now on my to do list:
 - Write letters and make videos for each of the girls' birthdays
 - Write letters and make videos for significant events in the girls lives: school exams, boyfriends, learning to drive, missions if they choose to serve, university, job interviews, engagements, weddings, births of their own babies, navigating motherhood.
 - Write letters and make videos for John
 - Write letters for my parents and brother and sisters and closest friends
 - Make sure my journal is up to date
 - Make sure the baby books, family photo books etc are all finished or up to date
 - Plan annual family photos
 - Plan holidays and fun things to do together
 - Write a will
 - Talk with John about his future.

Just thinking about this is making me cry......the thought of missing important events in their lives and even the day to day small stuff and not being there for my girls is painful. To be honest I try not to think about it but I am going to have to and I am going to make sure I do all of the things listed above. If you have any other ideas I'd love to hear them.

And that was the post, at least what I had written before our miracle. I prayed and prayed that I would get to live until my girls are grown and now I get to! I cannot tell you exactly how that feels. I cannot tell you the joy I feel that I get to experience all the big and little things with them, and with John. And now I pray with thanks every day.

And now my task is to remember. Remember to do all the things on that list in some form. Remember to never take life for granted. Remember that growing old is a gift. Remember to live as though I will not live forever. And remember what is most important!

Thank you for sharing our journey with us.
Rach

The kindness

I wanted to thank you all and tell you about the kindness. The kindness that came so easily from so many of you. The kindness that meant so much to us at that difficult time. The kindness that made a massive difference when things were hard.

John said "You really see the best of humanity when things get tough." And it's true. People are amazing! You are amazing! You came to our aid in so many different ways. Rallied around us and supported us in ways we really needed (without asking) and in ways we didn't realise we needed.

We were, and continue to feel, overwhelmed.

I know many of you, far away, wanted to do more and felt you could not do enough. Let me tell me just how important your prayers and fasts were to us. And let's be honest - they worked!

Our favourite stories came from a few of you who shared your experiences (or your children's experiences) of praying for us. The relief and joy and gratitude that your prayers were answered. And answered so quickly and in the way everyone was hoping and wishing for. Thank you for sharing these with us.

For everyone who prayed, for everyone who fasted, for everyone who sent messages, for everyone who called, made us meals, brought treats, care packages, fruit, vegetables, gifts, cards, flowers, plants, food gift cards, sent blankets, even loaned their cars. For everyone who visited, offered to visit, flew (our Mums) and planned to fly (my sisters) across the world. For everyone who looked after our girls. For everyone who cried with us, for us, because of us.

Thank you!

You may never know how much it means.

Thank you for being part of our miracle. 

Post surgery recovery

It has been more than two weeks since surgery and I am healing well.

There were a few minor complications but certainly nothing to complain about.

As the tumour was in the parotid gland (the main salivary gland) it means that since it was removed I have been salivating and collecting fluid in the wound. Whenever I salivate (any time I eat or even anticipate eating) fluid has leaked from the wound - nice!

I was on a diet of bland food at first but this didn't stop me salivating completely. At first the fluid would build up in my neck and cause a lot of pressure. It didn't feel nice. After two weeks it settled down and while there was no more pressure or pain there was still leaking.

At the follow-up appointment (where the girls also met Dr Ch'ng and Elle thanked her) it looked a little infected and so a course of antibiotics was prescribed with nice large dressings applying pressure. It should settle down in a few more weeks.

The incision goes down in front of my ear and then curves round just behind and under my ear. The feeling in my ear is slowly coming back and I may or may not regain full feeling. Again not an issue.

Here it is two days following surgery in between dressing changes:


Here it is one week following surgery:


Here it is two weeks out and post follow-up with the well healed scar in front of the ear and the nice large dressing adding pressure to help resolve the collection of fluid:


And here it is four days later (yesterday):

It looks even better today!

Following this type of surgery patients are often left with a dip in their neck where the tumour and gland once were. This is solved by filling the space with fat from elsewhere (tummy usually). Ideally it is done at the same time the tumour is removed but because the plan was that I would have radiotherapy they were waiting to do this until this was finished.

The surgeon, who was convinced the tumour was benign at the time of removal, wanted to go ahead with this procedure and called the pathologist. Because the pathologist was so certain of the initial diagnosis it didn't go ahead and once the new diagnosis was confirmed another surgery was planned to do this. The great news is I don't have much of a dip and will not be having further surgery!

Any dip will be a reminder that life is precious and every day counts. I certainly won't complain about that.

Life is good! 

The pathology

So here's the story about the pathology.

People keep asking how they could have got it wrong. The thing is they didn't - at least not completely.

The pathology from the original biopsy gave the diagnosis of Adenoid Cystic Carcinoma (ACC). The pathologist was certain. Once the tumour was removed and sent for analysis it came back benign (amazing). John started work with the head and neck surgical team the Monday following my surgery (crazy huh?) and was in the team meeting that morning where my case was discussed. The tumour was an Adenoid Cystic pleomorphic adenoma. A very uncommon benign tumour that has histological features that look exactly the same as ACC! The last one documented was back in 2003. The hospital will use it as a great learning case for all their trainees going forward and it will be presented and published.

So whether you believe it was an honest mistake or a miracle is up to you. Personally, I'm going for miracle!

And I'm grateful. Grateful for the experience (even though it was really hard for a while) and grateful for the way it has changed us.

Changed forever

The past two days have been full of gratitude, prayers of thanks and celebrations (with resting in between, I promise).

I started writing a few posts to put down my thoughts about what, at that time, was our new reality. It was very difficult to write about (especially when it didn't feel real and I was struggling to admit it was the truth) and reading over things again makes me even more grateful and just lost for words. I will post them soon.

I first want to write about the lessons we have learned from this journey.

Our miracle means that I will not need radiotherapy and I will also not need 6 monthly CT scans and MRIs for the rest of my life. It also means that I will not die in the next 5-10 years!

A friend suggested we celebrate the 9th September as a new birthday and I think we will (it is also my parents wedding anniversary). The day I was given back my life. We will have a huge party in 10 years time!

In fact I think I will feel like celebrating every year, every day even, to celebrate being with John and having the gift of getting to raise our girls.

When it came down to it that was all I wanted.

All I wanted was to raise and be there for my beautiful girls and to grow old with John.

Elle is 2 (3 in November) and Kate turned 1 in July (she is 14 months today). The thought of 5 or 10 years was an impossible one, one I could not even entertain. I kept thinking if I could make it until they're grown, until they're adults with lives of their own, I would be happy. And then I would think about their children and who would be there to take care of them when they have babies, and a million other things, and it just wasn't enough.

As John and I talked through things, changed our plans and our priorities, this is what mattered most, actually this is ALL that mattered:

• Time together as a family
• Raising happy, kind, considerate and intelligent girls
• Time with our extended families

That's it! Nothing more.

And this made us change things. John changed all his plans for his medical career. We thought about where we want to raise the girls, where we can create happy, lasting memories, how we can pay off student debt quickly so we can have flexibility to go where we want and do what we want, together. I'll be forever grateful for the sacrifices John made and was willing (and still is willing) to make.

We are having new discussions now and the great thing is that even though I have my life back our priorities are the same and maybe our new plans will remain just that. Our new plans.

You see, life will never be the same for so many reasons. And now all them are good ones!

Here we are yesterday, at the beach, getting some family time and sunshine. Our first picture to celebrate no cancer.

Our miracle

I'm not sure where to start. I'll start with the incredible news we received today.

The tumour is benign!

I slept very well last night (the nurses were very kind and decided not to interrupt me in the night to take my vital signs). I was feeling great this morning, the drain was taken out and I was discharged. Having a doctor for a husband has proved very handy indeed and things happened quickly and smoothly. It also meant I received lots of visitors and lots of special treatment. Thanks John!

It was wonderful to be home and back with John, Mum and the girls. Our friend Felicity took Elle out with her kids for the morning and she had a great time. I settled back in and rested. While we were having lunch the surgeon called John. Once they had finished talking this is how the conversation went:

Me: looking curiously at John.....
John: The pathology is back. You have a benign pleomorphic adenoma
Me: You mean I don't have cancer?
John: Yes!
Me: You mean I will die when I'm old?
John: Yes!

Needless to say we were in shock and amazed and so so grateful. It's only just starting to sink in now, hours later. We called family (woke them up) and friends and were just amazed. The surgeon called John again and she is just as thrilled as we were. We called her later as well and I talked to her to thank her. This is when things became more real.

Dr Ch'ng said that she was thrilled and relieved for us. She and her husband had been talking about us and feeling pretty desperate (they also have two young children). She said she would have given me 5-10 years (starting to sink in now). As she was performing the surgery she prayed. She said the tumour did not look cancerous and looked like other benign tumours she had removed. She called the pathologist that analysed the biopsy results and the pathologist said she was certain it was Adenoid Cystic Carcinoma. Dr Ch'ng wasn't convinced. She asked for the pathology on the tumour to be rushed through and it was. It came back today and she called straight away - the tumour is benign. It is a pleomorphic adenoma. I do not have cancer!

This news is an answer to prayers.....to so many prayers! We have said many prayers of thanks today. I feel that I have been given a second chance, that I have been given my life back. I don't know that I can put my emotions into words right now.

I will write more tomorrow. I also have other posts to finish, posts about how I was feeling about the diagnosis and about how our lives had changed forever.

What I can say is that our lives will never be the same and that we will never take life for granted anymore! Thank you. Just thank you everyone. 

Surgery

I am truly overwhelmed by all the love, support, prayers and fasts in my behalf and for my family. Thank you. We feel blessed, comforted and sustained.

Surgery was a success.

We left early on Wednesday morning (yesterday) and got prepped. The team was fantastic. I was feeling calm and happy.

Not long after arriving in theatre the room went dizzy, the surgeon, Dr Sydney Ch’ng, said hello and that’s the last I remember until John was holding my hand and calling my name. It was so nice he was able to put on scrubs and come into recovery. It’s rough coming round after a general anesthetic and so it was reassuring to have John there.

This is before I came round, and then right after.

Once I was back on the ward I was feeling good. Pain was minimal. I had a drip which they have taken out today and a drain from the gland which is clear today and will be removed tomorrow.

Surgery took about three hours. The tumour was very well encapsulated (good news) and was all removed. There was a fair bit of tugging on the mandibular branch of the facial nerve so some temporary facial paralysis was a risk but I’m delighted to report that there is none and all the nerves are intact.

I slept well and have had a good day today. Even got a shower (avoiding the left side of my face and neck). John, Mum and the girls came in to visit and it was wonderful to see them. They are coping really well with all of this and loved moving the bed up and down and meeting all the Drs and nurses and Dada’s colleagues.

John’s dermatology team came to visit with flowers and balloons for the girls. The Blacks also came to visit and so did Claire.

Tomorrow they will remove the drain and then I can go home. We wait a week for the pathology where we will get more information and the stage of the tumour.  

Once I have healed I will start a 6 week course of radiotherapy, 15 minute sessions, every day.

I am so grateful this has been successful. Prayer works. I really am feeling great. Thank you everyone. 

What is Adenoid Cystic Cacinoma (ACC)?

Have you heard of it? I hadn't. John hadn't either. In fact I think only one person who heard the news had heard of it. So here's some basic information in case you're wondering.

Contrary to its name it does not involve the adenoids. It occurs mainly in the salivary glands, the major one being the parotid gland. The tumour I have is in my left parotid gland. 

"Due to its slow growth, ACC has a relatively indolent but relentless course. Unlike most carcinomas, most patients with ACC survive for 5 years, only to have tumors recur and progress. (See: http://www.oralcancerfoundation.org/facts/rare/ac/)

Currently the best treatment is surgical resection (removal) and postoperative radiotherapy. 

It is rare. 2 or 3 in a million. There have only been 60 cases in Australia since 1950. 

The good news is that it is generally a slow growing cancer. 

The bad news is that it has high propensity to recur locally and in other parts of the body and for distant metastasis. This can occur decades after initial diagnosis. If there is metastasis there is no treatment. Because of this the literature gives an 8 to 15 year survival rate! This is information that I cannot entertain right now. John and I have been making some life decisions and changing plans because of this but I am determined to live a long and happy life with John and my girls! More on this later too.

The whirlwind that happened next

My work days are Monday to Wednesday and so the girls and I were having a relaxing morning playing before a play date in the park with friends when John called with the news. Adenoid Cystic Carcinoma (ACC). It is low-grade (slow growing) and that is good news.

Of course it didn't sink in, I'm not entirely sure it really has, even now. It is still very surreal as I have no symptoms and feel just fine.

John had done a very brief search for some information as neither of us had heard of it previously, and it wasn't great news. I sent messages to my family to see who, if anyone, was awake and talked first to Hannah and then to Mum and Dad  (and everyone else and John's family too as the day went on). They too did a lot of searches to get more information. My neighbour, and good friend, Claire ran across the road to give me a hug and see what she could do.

The girls were a great distraction and didn't give me time to look into it further or think about it too much, so off we went to play in the park. In the afternoon it was Elle's swimming lesson and we went out to dinner following that and tried to process it all. John had to work on Saturday and did more reading. He definitely felt the weight of the diagnosis before I did! He finished late, 11pm, came home and filled me in, we cried.

The following weeks were a whirlwind of tests and appointments.

The next Monday (1^st August) we had an appointment with the doctor who confirmed the diagnosis and called the hospital for an appointment with a head and neck surgeon / oncologist. John was already onto it and we had chosen the surgeon (there are three) we would most like (though honestly they are all brilliant and we would have been happy with any of them). An appointment was secured for the following Thursday but John used his connections and we were able to get an appointment the following day. The surgeon squeezed us in. I was grateful for this as it was all now becoming real for me too.

The appointment with the surgeon was great. Our surgeon, Dr Sydney Ch’ng is brilliant and I feel lucky to have her. She talked us through everything (it is very rare – 2/3 in a million, I am young to have this, we do not know what causes it etc etc). The tumour is in my left parotid gland. The main facial nerve runs through this gland. She examined my face, neck, throat and lymph nodes and all looked good so far (it was not protruding into my throat, no enlarged lymph nodes, no facial paralysis) but the mass felt bigger than 13mm, possibly as a result of bleeding following the biopsy. Surgery is required to remove it and is tricky because of the close proximity to the facial nerve.

Following the appointment I had blood taken, the following day I had CT scans of my head and neck, the following week I had MRI scans of my head and neck.

Here is the first of my war wounds.

The CT scans showed that no lymph nodes have been affected which is really good news and hopefully means it has not spread. The MRI scans showed that the tumour is well demarked and not too close to the facial nerve. It also showed no spread to the nerves.

Here are two of the MRI images - see that white circle on the right, that's the tumour.

This image shows its size. 16mm here, bigger following the biopsy.

The following Friday night Claire babysat so John and I could go out for dessert and talk some more. John had printed a LOT of medical information and papers about ACC and it was pretty depressing reading. More on that in the next post.

The following week the head and neck team met to discuss my case with all the test and scan results so far. Here they discussed a plan for surgery and treatment.

Meanwhile our families and friends were rallying around. We had treats, flowers, care packages and meals delivered. Visitors, calls and messages of love and support and hope. It really was incredible and we felt loved!

The diagnosis

One of the most common questions I am asked is what lead to the diagnosis and how I found it, so I thought I'd start with that.

I have a small lump behind my left ear, in the top of my neck. It's not very big. I noticed it a while ago, didn't think too much of it (with two young girls who spend three days a week in daycare colds and such are a common occurrence in our family and I assumed it was an enlarged lymph node), but I did mention it to our family doctor at an appointment following the birth of baby Kate. The GP examined me and checked surrounding lymph nodes and told me to monitor it and return if it grows in size or doesn't go away.

It didn't, though I didn't think it had grown, and so mentioned it again at another routine appointment with baby Kate.  Now I should mention here that we have a really great family doctor. John did his GP rotation with him as a medical student and liked him so much that we registered with him as a family. I am glad we did. At the appointment he examined me again and thought it might have grown slightly. He wanted to check it out to see what it was and so arranged for me to have an ultrasound. This happened a few days later (21st July) and off I went with the girls. The sonographer was great, so great in fact that after we had left Elle said she wanted to be a sonographer when she grew up (she usually wants to be a tooth fairy)! The sonographer said it didn't look good and the doctor would want a biopsy. Sure enough, a few hours later the doctor called and said he was very concerned. The ultrasound showed a lump about 13mm in size, it had a blood flow and signs of calcification. None of these are good signs. He had me booked in for a biopsy three days later. He also called John. Once John got home for the day he took a good look at the ultrasound pictures and was also concerned. At this stage I wasn't too concerned. Nothing to worry about yet.

The biopsy was on Monday morning. I watched on the screen as they stuck and jiggled a needle around in my neck. Afterwards I felt like I had been to the dentist as half of my face was numb. Nothing to do now but wait. Results take about 5 days. The pathology was done at Royal Prince Alfred Hospital in Sydney (RPA) which is where John works and so each day he called down to see if the results were in. They took 4 days and on Friday morning John called - the results were in.

The diagnosis was Adenoid Cystic Carcinoma (ACC).