Hotel de Barry

Hi kids!

Last time I updated things weren't looking too good, but true to form Dad's done a complete 180.
Sorry I haven't updated for ages again, but we wanted to sort everything out before I posted.

Dad has gone in to palliative care in Murdoch (which is the south end of whoop-whoop when coming from our place near the Swan Valley). I'm not going to go into great detail as to why Dad is now in palliative care, but it wasn't working having Dad at home. We couldn't give him the care he needs, and moving Dad to Murdoch was reccommended to us by his pain-management team at Royal Perth, since his pain is becoming a lot more unmanageable. I will not have anyone question why Dad, Mum and I, as a family, have decided to do this. I will not have anyone make the assumption we have abandonded Dad, or given up on him. Some people have been hinting quite un-subltely that it's not the right thing to do, and all I will say is that you have no idea what it is like at home, so until you do (and I hope to whatever diety you believe in that you never have to), don't pretend to be an expert on, or totally cool with, caring for someone who could quite possibly bleed to death at any moment (and who has now had 4 bleeds in a month, with one of those at home). Let me tell you, it's not easy, for Dad, Mum, or myself.
 EDIT: and I'd also like to say thank you to everyone who has been supporting Dad, Mum and I through this decision, whether it be in the form of a hug, an email or some kind words. It makes it a lot easier for us knowing we have people who understand, or at the very least see, where we are coming from.

Moving on, the hospice is a 45 minute drive in no traffic, and at least a 1hr 15min drive in peak hour- pain in the bum, yes, but the place is amazing. Dad has his own spacious room (it's as big as our living room!), complete with his own private bathroom, a flat-screen TV, bar fridge, carved headboard for his hospital bed and ceiling-to-floor windows with access to a paved courtyard. The courtyard has about 10 outdoor settings, and leads to manicured lawns with pergolas for picnics. In the complex, there are "conversation areas" scattered throughout, with armchairs and fish tanks and water features. There is also a "family room" with a large flat screen TV, vending machines, fully functional kitchen (for guests to prepare food in), and leading out from this is a kids play area (with better playground equipment than most schools!) and a BBQ area with a whopper of a BBQ. All the staff are AMAZING, to say the least, and in the four days we've been here every staff member has popped their head in to say hello and have a chat. There are no visiting hours, and they can roll in some beds for Mum and I to sleep on, would we like to stay the night.

For those who would like to contact Dad, he's connected to the internet, so you can email him or message him on Facebook. If you'd like to visit Dad, please contact me and I'll give you the address.

Another Rollercoaster Ride

Hi All.

Dad's had another turn.
On Sunday (2^nd January 2011), Dad had a small haemorrhage at home. It was only a small amount of blood he lost (think the "normal" persons nosebleed), but it scared the shit out of Mum and I (and Dad, obviously). We called Silver Chain and waited 45 minutes for them to come out (since our rep was in Maddington- she made bloody good time, too!) and check him out. It stopped by itself, so we went on with life as usual (although we were even more cautious as usual).

Dad still wasn't feeling 100% for the rest of the day, and he woke up yesterday (Monday 3^rd January) still feeling off. He slept a lot of the day yesterday and about 6.00pm he woke up from yet another nap really feeling off. A little bit after that he suddenly said he felt cold, and started shivering uncontrollably (to the point of almost convulsing). Mum took his temperature and it was something like 38degrees (which is high- according to the nursing staff, anything over 37degrees is something to worry about). We were getting ready to drive him to the emergency department when he suddenly said he was super, super cold. We took his temperature again and it had hit 39.4degrees. We called an ambulance (which got here in record time!) and they carted him off to the ED.

We spent about 5 hours in the ED while the doctors ran tests, took bloods, etc. They called his oncologist and it was decided Dad would be admitted to hospital (Ward 10A, where he was last time). By the time we got up there and got Dad settled, Mum and I got home about 2.00am.

We got back into the hospital early this morning to catch the doctors. Dad wasn't looking too well (his fever keeps spiking then dropping from about 39.35 down to 37 and then back up) and he was really hot to touch.

Mid-to-late morning, Dad started haemorrhaging again. It wasn't a large bleed; it was smaller than the first two but greater in volume than the third on Sunday (I wasn't there for this; I'd just gone to my Aunty Robyn's to try and get a couple of hours sleep after weeks of Mum and I not sleeping). Ever since, he's been in and out of lucidity. Sometimes if you ask him the same question twice in a row he'll give you two different answers, or just doesn't understand what you're asking him. He is very weak.

According to Dad's oncologist, he will be in hospital indefinately- there is no way they can send Dad home the way he is (Dad's pushing to move his arm, let alone his whole body, anyway; he is bed-ridden).

I will keep you all posted, but as you all understand, I will hold off posting for a few hours, or even days, once I get news as I will ensure Dad's extended family in Queensland are informed so they don't have to find out through the internet.

I would once again like to thank everybody who reads the blog, whether or not you email me or leave a comment, for your thoughts, support and love. You are all amazing, wonderful people who make this crappy situation a little better for Mum, Dad and myself.

Until next time,

Being Lazy

Hi everyone!

I'm so sorry for the lack of updates again- I've been so lazy between Christmas and New Year (ah, who am I kidding? I'm just lazy in general...).

Dad has been behaving himself so far- he's giving cheek again, but I'm not going to complain about that!! He is still getting tired quite easily, but he is slowly becoming even stronger. We went out last night to my grandparents house for an hour or two and Dad really enjoyed it- besides trips to the hospital, that was one of the only times he's been outside the house! Dad also drove down to the shops yesterday (which are about a kilometre from our place) along the back streets- I know I say it in almost every blog post, but he really is the most amazing, strong man.

Dad started chemo again on Thursday 30^th December 2010. It's a gentler dose from the previous one he was on, and the drug is normally used for treating breast cancer, but apparently throat cancers also respond very well to it. So far, Dad has been fine with it. He's not experienced any side effects (yet), so fingers crossed all will be well in that regard, however, he does have to watch it for up to three weeks.

That's all the news so far- I hope your christmas and new year were wonderful and happy, and may your 2011 bring you health, joy and love.

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.