Home!

Hi guys.

Just a quick update- Dad came home from hospital on Friday night (the 17th of Dec)!!!!!!!!
The nurses and doctors are just so amazed at how strong he is. If you saw him now, you wouldn't know he was sick. Those who saw him after the first bleed and who saw him this weekend were in shock- he looks like a completely different person!

One Thing After Another

Hi everyone.

Dad had been getting so much better after his bleed and subsequent operation- so much better, in fact, the doctors allowed him day-leave from the hospital on Saturday and Sunday, and were going to look at discharging him Monday (today) or Tuesday (tomorrow).

On Saturday we went to Kings Park in Perth and just had a little walk around (with Dad in a wheelchair, as he was still very weak). It wasn't much but for Mum and I, and I hope for Dad, it was just the most blissful day. On Sunday we picked him up from the hospital about 10.00am and took him home for the day. He walked into the house (for the first time in a week and a half) and checked everything- making sure we'd fed the birds, locked his shed up, etc etc. Then he fell asleep in his favourite arm chair for most of the afternoon, on-and-off. Again, it wasn't much, but it was magical, having him home even temporarily.

About 5.00pm our time we decided we'd better take Dad back to the hospital (we didn't want the nurses to tell us off! Haha). He insisted on walking half the way from where we parked the car to his ward, which was so amazing considering we were told that he'd never be "Dad" again after the bleed last Saturday. We'd just gotten him up to bed and settled, when he started bleeding gushing out blood from his nose and mouth.

This time the nurses were ready for it, in terms of knowing what to do with medicines and stuff- they sedated him immediately and gave him a whopping great dose of morphine so he wouldn't feel anything. It had pretty much rendered him unconcious- he was breathing but not awake or aware. About 5 minutes after he started bleeding, the bleeding stopped as soon as it started. The nurses told us to come in and say our goodbyes, as there was no way he'd survive the second bleed, especially as there was nothing they could do surgically and blood transfusions were pointless. We spent all night with him, holding his hand and telling him how much we love him, how proud we are of him, and how amazing he is. At about 11.00pm, something amazing happened. He started moving, and he opened his eyes. By 5.00am this morning, he was lucid, awake and aware. If I thought last Saturday was a miracle, then this was... something else. I can't describe it.

Dad is now awake, and talking, and giving us lots of cheek. He's holding our hands, telling us that he loves us and reminiscing. It's amazing. He is amazing. He is so very, very amazing. I've said it once, and I'll say it a million times again, but I am so in awe of him, and I am so very, very proud of him.

It's a friggin' rollercoaster ride of emotions, going from thinking you've lost your father, to knowing he's ok, to thinking he's coming home, and then thinking you're going to lose him again, to knowing he's alright again, but I wouldn't change it for anything or anyone at all. I wouldn't trade one second of this for all the peace or happiness or riches in the world. I'm trying to make seconds count as years now.

I'll keep you all up-to-date, as always, with how he's going.

The Go

Hi everyone.

Dad's had a turn for the worse. As I said in the last post, Dad went in on Wednesday to start chemo. They settled him the Wednesday afternoon/night, and then Thursday morning he was taken down to Radiology to have a PICC line inserted into his upper arm. This was so the chemo can be pumped into him 24hrs a day without having to fiddle around with a cannula's (needles in the hand). On the Saturday, they decided as he was taking the chemo so well, that he could come home (with the chemo pump attached). He was due for discharge at 10 am Saturday the 4^th of December.

They had to order a cleaning solution for his PICC line (as one of the lines had blocked up) and for some reason it didn't arrive before 10, so he obviously had to stay in longer until they could flush the line. At 3pm he called us and told us to come in, as he was ready to come home and we needed to know how to work the chemo pump before he could go. In the half hour it took Mum and I to get to the hospital, Dad started haemorrhaging, with blood streaming out of his nose and mouth in very large amounts. By the time Mum and I got to the hospital, the nurses and doctor had cleaned him up and the bleeding had stopped. We were there for half an hour and then Dad needed to cough, as he'd swallowed a lot of blood during the first bleed and a little of it had gone into the back of his throat and his lungs. Dad leant forward to cough, and the bleeding started again with Mum and I standing not even a metre away from him.

Without going into gory details, I have never seen so much blood come out of a person. The only way I can describe it is like a tap turning on, from nothing at all to a full-flow instantly. There was no warning. The MedEm (Medical Emergency) doctors and nurses were called in as the ward staff couldn't figure out where all this blood was coming from. They tried to do what they could, but they also couldn't figure out where the bleed was coming from, as they obviously weren't familiar with Dad's case and there was just no time to go through pages and pages of notes from his oncologist, speech pathologist and ENT specialist. They worked on him for about half an hour and still hadn't made any headway, besides pumping six bags of blood into him to replace what he was losing. Mum and I were getting very frustrated, as we could hear everything that was going on, and informed them that as the tumour was on the Carotid artery, there was a chance it was the carotid that had ruptured. Having told them this, they prepped him for surgery and whisked him away to theatre.

We waited for hours for news... about 4 or 5 hours, I honestly can't remember. All I know is that Mum and I were both convinved Dad wouldn't pull through- we (Mum, Dad and I) were told explicitly at the beginning of our fight that if the carotid burst, there was nothing they would be able to do.

At about 11pm we were told that they'd managed to put a stent into the part of the carotid that had ruptured, which had stopped him haemorrhaging. He was alive. Being told that was the single most greatest moment of my life, bar none. The surgeons were worried he might have some brain damage as his brain could have been deprived of oxygen for a while (as the carotid artery takes oxygenated blood to the brain). Thankfully, though, he is alright. He is fully aware of what's going on. He knows what happened.

After the surgeons got him out of theatre, he was taken straight to the High Dependancy Unit, which is where he's been since. He is very, very weak, but at the moment he is ok. Mum and I are spending as much time as we can with him.

When the surgeons spoke to us after they'd put the stent in, I asked how long they would have estimated he would have left. They said before the operation, they would have given him approximately 3 months. Now, after this has happened, they have obviously drastically shortened this expectation. Yes, Dad is aware of it and he doesn't want to talk about it right now. Please respect his wishes and do not bring it up on the off-chance you get to speak with him (no phones allowed in HDU, and he's not able to speak at the moment anyway).

Mum's sisters (my Aunty Robyn and Aunty Donna) came up to the hospital to be with us on the Saturday night, as did my Mum's best friend Karen (who, as far as we are concerned, is family). They were so amazing and stayed with us right through to midnight. They waited so patiently in the corridor for us while Mum and I spent almost 30 minutes with Dad straight after his surgery in HDU. Mum and I were quite upset (as I assume you would be when you watch your father/husband start to bleed out), so my grandparents picked up our car, and Aunty Robyn, Aunty Donna and Aunty Karen drove us home (and Aunty Robyn stayed with us that night to keep us company, as no one slept much).  My grandparents and Aunties have been driving us to and from the hospital every day, which has been a massive help- neither Mum and I have been in any state to get behind the wheel. So thank you to you all.

Thank you everyone for your thoughts, prayers and love. This is a very, very distressing time for Mum and I, and obviously more-so for my father, who is as brave and strong as ever. The doctors couldn't believe how much of a fighter he is- they are all amazed. He is, without a doubt, an absolute hero, and I am a very, very, very proud daughter.

I'm sorry if this post is a bit rambling and incoherant at times, Mum and I spent all day at the hospital again today and we're exhausted. We are doing alright, just taking one day at a time. Like I said earlier, Dad is alright as well. He is very weak, but he knows what's going on, what's happening, what's going to happen... and he still managed to (jokingly) give us "the finger" today, so he mustn't be doing too badly!

Thank you to everyone else for your love, wishes and prayers. They might seem so simple to send or say, but they mean so much to us and make us realise we're not alone- especially for Dad. If you would like to send your well wishes, thoughts and love to Dad, please feel free to email me at jess@andsoourfightbegan.com, and I will pass them on.

Medical Oncology

Hi everyone.

Dad had an appointment with medical oncology (chemo doctors) yesterday. The results of his latest CT scan showed that the cancer has grown, and is now starting to associate with the main vein in his neck (and it has already tightly grown around his carotid artery, like I mentioned in this post). The doctors are happy to give chemo a go for a few cycles, to see how it will affect the tumours growth (it won't shrink it, but hopefully it will slow its growth). They gave Dad two options concerning how they can administer the chemo:
A) A huge "blast" of chemo, non-stop for four days (which he will have to stay in hospital for as they're giving him the drugs 24hrs a day) every month,
B) Just "normal" chemo (i.e. he'll go in as a day patient, have it infused and then go home again).
He can choose to stop treatment at any time, and if the "blast" of chemo makes him feel too sick he can switch to "normal" chemo.
These are only rough explainations- I'm not going to go into a lot of detail as it's just so confusing and hard to explain.

Anyway, Dad chose to have the "blast" chemo. He'll have to have a PIC line inserted into his upper arm, so they can give him the continuous chemo. Depending on how he takes it, for the next cycle there's a possibility he could have it at home and just carry around the chemo pump with him- but we'll see how that goes.

They sent us home and told us to expect a call in the next few days. Today we got a call from the hospital saying they have a bed available for him, so at 2.15 today he's getting admitted and they'll put the PIC line in, and then hopefully they'll start chemo tomorrow.

Dad is starting to get really tired, but he's doing okay.
Thank you for all your love and support.

Sorry we haven't called anyone, there's been no time. I'm writing this as Mum's packing Dad's bag for his hospital trip. Rush rush rush.

Just An Update

Hi Everyone!

So, Dad's had a few appointments in the last few weeks- he had radiology on Tuesday the 16^th of November and medical oncology (Chemotherapy Doctors)the day after. The radiologist said that while they can treat Dad with radiotherapy again, they'd prefer not to, due to the fact they gave him the highest dose they could only 8 years ago. His tissue would still be scarred from the last time, and it could do more harm than good.

Mum and Dad went and saw the medical oncologist on Wednesday the 17^th without me (gotta love having to work!), and they were happy to give Dad a few cycles of chemo, so long as the tumour hadn't grown rapidly. They sent Dad for a CAT scan, which he had today. We won't get the results until next Tuesday.

We've had a little bit of drama- Dad's PEG feeder has been a little bit infected, and so he's had to go on more antibiotics for it. Besides that, though, he's doing really well.

There's not much else to report, but when there is I'll let you all know.

Home is where the heart is...

Hi Everyone!

Big news... Dad came home from the hospital today! He is such a trooper. A few days ago the doctors put a PEG feeder into his stomach to feed him when he needs it (i.e. if he starts having trouble swallowing). He's not allowed to start on solids for a few days (until they put his valve back in so he can speak), but once he is allowed to swallow, the PEG will only be there in case he needs it (he won't have to use it).

Dad is tired but he's good. I'll continue to let you all know what the go is. We've got Dad's twin sister Barb over here at the moment, so he's really enjoying the company (not to mention someone to stir constantly!). I love family visits! :)

Keep safe, be happy and always smile.

Two Days After

Hi guys, sorry I haven't updated the blog as quickly as I said I would.
The news isn't too good and, as you can understand, we wanted all of our family to be told in person, or at least over the phone, what happened before I blogged it.

As you all know, Dad went in for his op on Tuesday the 26th of October. The doctors were very positive about the operation and even said that it would be highly unlikely that they wouldn't be able to carry out the entire procedure. They said that there would be a small chance that the cancer would have spread, but they wouldn't really know until they opened him up. They told us that the later we heard from them, the better, and after about 2.00pm AWST we'd at least know if they could do the operation, or if the cancer had spread and it would be inoperable.

At quarter past two I mentioned to Mum that as we hadn't heard anything, things must be looking up and the operation must be going well. No more than 15 minutes later, the phone started ringing. The surgeons had opened Dad up, looked around, and found that the tumour had started associating with the main blood vessel to Dad's brain (the Carotid artery), and had pretty much wrapped itself around it. A partial dissection (where they cut away part of the tumour) wasn't possible since it would have exacerbated the already fast growth of the tumour, and would have spread it even more. They didn't bother touching Dad's thyroid, either. They closed him up after doing nothing.

This effectively means that there are no other possible curative treatment options for Dad. His illness is terminal. We have spoken to the chemotherapy doctors and they seem to think that they'll be able to give him a very low dose of chemo (once he's all healed from the incisions the surgeons made) to try and stop the growth of the cancer (which will give him more time with us). The dosage would be very low, so he won't be sick at all. Dad obviously needs some time to a) come to terms with the diagnosis and b) decide if he would like to explore the option of chemotherapy.

Dad is doing alright though. Today he was up and about. He's already gone for two walks and a shower, and it's only 12.00pm! He is being so brave.

So for now, that's really about it, and I'll definately keep you all posted.

Please, let this be a reminder to you all to spend time with your loved ones. Cherish them. Love them. TELL THEM HOW MUCH THEY MEAN TO YOU, because you won't always have them here so you can say it to their face. Yes, I know people argue. Everyone does. So argue. But don't say things you know you'll regret later, and don't go to bed angry at each other. Life is too short and precious to waste one more moment than you absolutely have to being angry at someone you love.

Please also let this remind you about how much damage cigarettes and excessive alcohol consumption can do to the human body. The original cancer 8 years ago was caused by Dads lifetime of smoking. He stopped after the first operation in 2002, but it had already caused so much damage. I know it's your own body and you can do with it what you like, but please remember that if you hurt yourself, you also hurt the people who love you and care about you.

I know I've said it in previous posts, but thank you all so much for your love and support. It means so much to us, and especially Dad. My father having cancer, both now and 8 years ago, is the most isolating and lonely experience ever. It's so hard on Mum as well, and I can't even begin to imagine how hard this is for my Dad.

Having to face not having my Dad down the track is so scary, and we're trying to enjoy and cherish every moment we spend together as a family. It sucks so much thinking that if one day I do get married, I won't have my Dad to walk me down the aisle, and when I have kids, they won't get to see for themselves how loving and funny and amazing my Dad is. Having you all sending texts, emails, whatever, makes it just that little bit less lonely and scary for us. It makes us feel like we're not completely alone. So thank you. Thank you so much.

Today

... we got up at 5.30am, and were at the hospital just before 7.00am (AWST). We got Dad ready for pre-op and walked him as far as we were allowed down the corridor before he was taken to the operating theatre.
A few tearful 'I love you's and he was whisked off.

It'll be at least about 4.00pm AWST before we know anything.
When I know, you'll know soon after.

Tomorrow

Hi Everyone,

Dad's operation is tomorrow morning. He has to be at the hospital by 7.00am, and he's the first cab off the rank, so hopefully he'll be in surgery by no later than 8.00am. It's an all-day operation if everything goes smoothly.

Dad had his final appointment at RPH today before the op tomorrow. We met the surgeons- there are two. One is a cancer specialist, and he will be removing the cancerous tissue, and a ring of tissue surrounding it. He will also be taking out part of Dad oesophagus. The other surgeon specialises in reconstructive surgery, so he'll be doing the skin and tissue graft from Dad's left wrist to his throat (for his new oesophagus) and also the skin graft to Dad's wrist from his thigh. Complicated, I know. The surgeons were fantastic though, they answered all my questions quite compehensively, which was really reassuring. They also cracked a joke or two, which I think helped Dad feel more comfortable (which is so important)!

One of my main concerns when we originally found out Dad's oesophagus would be replaced was how he would be able to swallow. I don't know if you're all aware, but when we swallow, there are waves of muscular contractions that push the food down to the stomach, called peristalsis. As the surgeons are going to remove Dad's oesophagus (and the surrounding tissue), the muscles that push food into Dad's stomach will also be removed. I asked the surgeons, and their response was that as Dad still has the top bit of his oesophagus (and therefore the smooth muscle used for peristalsis) he should still be able to get food down pretty well after he's healed. What peristalsis won't be able to do, gravity should. The food might just need to have a bit more moisture so it'll slide down easier (sorry, Dad, guess that means no more dry weetbix for you).

The surgeons are also going to remove Dad's thyroid gland (which controls cell metabolism), which we found out today is also cancerous. Around the thyroid gland are four other glands, called the Parathyroid Glands. These glands control the amount of calcium in the blood and bones. They are apparently quite hard to distinguish from the thyroid or fat during surgery, so there is a chance that these glands will be damaged serverely. Even if one gland is left intact, Dad will be ok, but if they somehow manage to damage all of them, then Dad will have to be on calcium therapy, as well as medication to replace the hormones the thyroid normally produces. After surgery, the amount of calcium in Dads blood will have to be monitored very closely, as that will be an indication as to if they have managed to save or destroy the Parathyroids. If it's not monitored and the calcium in his blood drops below a certain level, he will die. No ifs, buts or maybes. The doctors will be doing at least two blood tests a day, but within a few hours post-op we should know what's happening.

Now, I'm not a religious person at all, but I do believe in a higher power or something. I also believe in the power of the mind. If you all could, please think of us during your prayers to the diety of your choice. Or pray to the Universe, Zeus, whoever or whatever the hell you can. It'll be much appreciated. Dad is a tough bugger, but a little extra help surely can't hurt.

I'd like to thank you all for reading this, even if you don't follow ASOFB on Blogger or whatever. It means a lot to know we're not alone.

I'll post as soon as I know how Dad's operation is going.

Lots of Love,

The Countdown

Hey everyone.

Just a quick update- Dad's operation has been pushed back to the 26th of October, and it is definately on.
The operation basically entails removing part of Dad's oesophagus and a large "ring" of tissue around the tumour. His thyroid gland will also be removed. The second part of the procedure will involve taking a vein from his left arm, and also a flap of skin from the same place, to rebuild his oesophagus. They may have to take some tissue from his leg or chest to "fill" the void left by the removal of the tumour. He will also need a skin-graft on his wrist (they will take skin from his thigh to replace the skin taken from his wrist for his oesophagal reconstruction, and let the wound on his thigh heal by itself).

FYI- They need to use skin from his wrist and not any where else. Not 100% sure why, but I'm learning that there is a method to their madness.

We've had some of the family over- it's been fantastic for Dad and for Mum and I.
We had Patrick over for three days (including Bathurst on the Sunday), and then after he left on Sunday night, we had to prepare for Syd and Bryan's (Bin) arrival on Monday night.
There has been so much shit-stirring and laughter- it's been totally fantastic.
I'm so glad they came over. I love you all <3.

We'll keep you all updated, as much as we can (I'm sorry I've been so lazy with my posting- I'll try and get my butt in to gear and keep you all in the loop).

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Kicking Cancers Butt: The Tour Dates

So, we finally have some dates and details.

Monday 4^th October: Biopsy
Monday 11^th October: Results
Monday 11^th October: Anaesthetist Appointment
Thursday 21^st October: Operation

That's all we know at the moment.
We're all ok.

My Uncle "Pud" (Dad's brother Patrick) is coming over to WA from QLD on Thursday the 7^th to Sunday the 10^th. The next day (Monday 11^th) Dad's other brothers, Syd and Brian, come over and stay til Thursday the 14^th (well it's really 12.05am on Friday, but whatever. It'll be Thursday night when we leave to go to the airport).
Dad's really excited, and so are Mum and I.
It's always nice to have a visit from the family- and the boys will cheer Dad up no end (though I'm sure there will be the usual amount of shit-stirring that inevitably occurs when the Lynch family members congregate, however small the grouping!).
Haha, no seriously, we all can't wait for them to come over.
If you're reading this Uncles Pud, Bin and Syd, we have tea, coffee and biscuits at the ready.

...And The Wait Continues.

After waiting for one and a half hours in the clinic today, we finally got the results of Dad's PET scan:
the cancer hasn't spread. Thank god.
There's a small mass in Dad's thyroid gland, so we are looking at the possibility of another biopsy in the very near future, before they operate, to see what it is.

That's quite literally the only information we got out of today's appointment.
They were supposed to have presented Dad's case to a board of doctors, but they hadn't even gotten around to that almost THREE WEEKS after they got the results. We got the registrar, not the usual surgeon we deal with, and this kid couldn't have been much older than me and was an incompetent imbecile.
We were in and out in under 5 minutes- and he didn't even ask if we had any questions.
He practically turfed us out. Grr.

So like I said, other than that, we have no more news. No operation date, no nothing.
I love how organised our doctors and surgeons are this time round (please note the sarcasm).

Thank you all for your love, prayers and kind words, too. We appreciate them more than you could know.

We'll let you know as soon as we know anything.

The Wait

D-day is Friday.
We'll let you all know when we know.

Please don't all call us; we'll call you.

An Introduction

This blog is not just about cancer, or feelings, or medicine or food.
It is about family. My family.
My family is my Father, Barry, my Mother, Jenni, and myself.
This blog is about my family's fight with cancer.

In December 2002, my father, Barry, was diagnosed with advanced throat cancer. A few days later, he was on the operating table at Royal Perth Hospital (RPH). He was given a laryngectomy (pron. larin-ject-oh-me), which very basically means that surgeons totally removed his voice box, and they also created¹ what is known as a tracheostoma², which sits between his clavicles³. My father chooses to cover his with a "collar", while others will cover theirs with gauze; some will just leave it uncovered.

In short, he was cut from behind his left ear, all the way down to where the stoma² sits, and then all the way up to behind his right ear. The surgeons then took tissue from his chest to rebuild his neck (other wise he would have looked pretty lopsided).

Before the operation (which combined both curative⁴ surgery and reconstructive⁵ surgery) we were given an approximate time-frame for a number of things, like how long he would be in hospital, how long it would take for him to be able to eat, etc. He did it all, and ahead of schedule, too.

Dad is a fighter. He amazed doctors with his sheer determination and mental strength. After being home for a month, he started radiotherapy. While it made him tired and sore, he powered on. Dad was supposed to do heaps of rehabilitation excersises to help with gaining strength back after the surgery on his chest. He took one look at them, thought, "Bugger this for a joke", and set about painting the gutters on our house instead. Yeah, it took him weeks and weeks to finish it, but doing something that was constructive as well as beneficial to his rehabilitation made more sense to him than normal rehab exercises. It also gave him a sense of "normalcy".
My father is a very special man.

After that ride, it took a while for us all to recover. Mum was working two jobs to cover medical bills (since Dad couldn't work for 6 months after the operation), and I wasn't able to help much since I was only 11 at the time. But we got through it, especially with the help of our extended family and friends.

In the middle of 2003, when I was 12, Dad went back to work. It was quite an achievement, as the doctors had expected it to be at least a year before he would have the strength to do it. But he did it.

By late 2003, Mum had started working in a Primary School as an education assistant to children with disabilities- a job she loves and is still doing today.

The years that followed weren't always easy- we all struggled a bit to deal with what had happened. The lifestyle change was huge, especially for Dad, but he pushed on and kept going. We all did.

More years passed and in 2008, I graduated high school. I started University in 2009 and then at the end of that year, I decided to take some time off to work and see what the "real world" was like.

At the start of 2010, Dad started complaining of a sore throat again, and started having trouble swallowing. We initially didn't think much of it, as Dad had been operated on once before to remove scar tissue that was the result of the radical operation he had in 2002. His symptoms were the same as the "scar tissue" episode. By June this year, it had gotten worse, so he went to see his GP again. She referred him straight to his ENT⁷ specialist, who sent him for CAT scans, biopsies and the like.

On this Monday, the 30^th of August 2010, after 8 years in remission, Dad was diagnosed again with throat cancer. It was a primary tumour, which pretty much means it isn't related to his last one; it is a brand new cancer, unlike a secondary tumour, which is an "off shoot" of an older tumour. We were informed that because of Dad's previous radiotherapy treatment, radiotherapy couldn't be used again. Chemotherapy is not an option either, as it only stops metastatic cells from travelling through the circulatory system. Dad would have to go for a P.E.T. scan to see if the cancer had metastasized⁹. If it has, there is not much, if anything, modern medicine can do, except make him comfortable. If the cancer hasn't spread, then they can operate. Surgeons will remove everything they reconstructed the first time around, and take more as well. Dad will lose the top part of his oesophagus¹⁰, which will then be reconstructed with a pieces of skin, arteries and veins from his arm. He will probably never be able to talk or work again. Eating will be much harder, and due to the oesophageal reconstruction, will have to be fed through a tube directly into his stomach for a few months.

Yesterday, the 1^st of Sepetember 2010, Dad went for a PET scan⁸ at Sir Charles Gairdner Hospital. We find out the results soon.

So that's where we're at.
Please feel free to ask questions and leave comments.

I'll keep you all updated.



Explainations and Details
¹. The procedure is called a tracheotomy.
². A tracheostoma is an opening in to the tachea (wind pipe), which leads straight into the lungs. We call it a "Trache" or "Stoma" for short.
³. Collar bones.
⁴. Removal of tumour (when confined to one area).
⁵. Restoration of looks and/or function.
⁶. Voice is achieved though esophageal speech.
⁷. Ear, Nose and Throat.
⁸. Positron Emission Tomography scan.
⁹. Spread.
¹⁰. Tube that food passes through, from mouth to stomach.