Back into hospital

I was admitted back into Port Macquarie Base Hospital on Friday 2nd November. I had a routine appointment with my Radiation Oncologist but had not been well in the last week, suffering from shortness of breath. He took one look at me and decided that I wasn’t going home that day (let’s just say I wasn’t surprised). In a matter of minutes I was in the nurses station at the Radiation Clinic having my obs checked, which showed my oxygen saturation level was at 77% when it normally sits somewhere between 95-100%. Breathing had become very difficult so I was put on oxygen and because I had a fever the IV antibiotics started as well.

I was later moved up to the ward and the steady flow of nurses and doctors started. For the first time since I was diagnosed I was really scared. What was happening, why couldn’t I breath properly, is this the end? By the next day there had been no improvement and with the gas on I was still struggling to breath. A nurse from ICU saw me about hooking me up to a high flow oxygen machine, which we decided would be a good idea. It took sometime to get me comfortable and get my breathing back under control but I think the medical staff were not ever very happy that I was making any progress. This part of my hospital stay is hard to recall, I was out of it for most of the day. On Saturday afternoon I had a visit from my Medical Oncologist who, as always is very straight forward with me, in the nicest way!ūüôā He told me I need to start thinking about what I want and don’t want when it comes to medical intervention and then had a chat to Chris to advise he should call the immediate family to let them know what was happening. Yes, my medical team believed my time was up – well I’m not ready to die, I’ll show them!

With an overnight stay in ICU to monitor my progress on the high flow oxygen machine and then a further 5 days getting stronger and weaning off the oxygen I was ready to go home by Thursday afternoon. I was completely off the oxygen, walking comfortably and feeling pretty good (with some help of that lovely red stuff they keep transfusing into me!)

I know this wasn’t just a scary time for me, I could see the fear in all those around me but felt comforted by the fact that both our immediate families were by my bedside, we almost had to set up a roster system as there are so many¬†Curries!ūüôā

Anyway, I am home again and feeling good. Noah is enjoying me being up and about and we’ve had lots of fun this past week. Whilst I will continue this fight for as long as I can my priority is to make happy memories for Noah and spend quality time with my family and friends.

Until next time…

L xx

I think drama likes me!

Well it’s been an action packed week here. ¬†Last Saturday I was just sitting on the lounge minding my own business while Chris and Noah were doing a spot of gardening. ¬†I decided to get up off the lounge to see how they were progressing when I soon realised that I couldn’t get up – strange feeling really. ¬†I called out to Chris who got me standing but then I couldn’t walk anywhere, this is the second time this has happened and it doesn’t get any easier.

Chris and I discussed what we should do, both knowing that I really should get up to the hospital but the thought of sitting in emergency waiting is very unappealing. ¬†So we called the Palliative Care team who have just taken us on and a lovely on call nurse came out to the house and arranged for an ambulance to come and take me to the hospital. ¬†Noah thought it was all very exciting, especially the part where they strapped me down with the seatbelts on the stretcher then put me “into the boot” of the ambulance.

Not long after I got settled in the ED ward at Port Base Hospital, Chris and Noah arrived. ¬†We then arranged for a friend to take Noah while the doctors and nurses worked out what they were going to do with me. ¬†First thing was an injection of steroids to reduce any inflammation around the spinal cord and hopefully get me walking again. ¬†This did help and I was starting to walk assisted within the hour. Then the decision was made to have an emergency MRI scan of the spine, which I was okay with, however there were no technicians available to perform the scan. ¬†By early evening I am being told by two ED doctors that I will have to go to John Hunter Hospital for the emergency scan as it could come down to the fact that left untreated I may not walk again! ¬†Talk about not trying to panic, I burst into tears proclaiming that I can’t go down to Newcastle by myself, knowing that Chris had to be Noah at this time. ¬†So of course, we called my wonderful parents who dropped everything so that they could meet me in Newcastle when I got there, little did we know it would be 11:30pm at night that I arrived at John Hunter Hospital – apparently that’s how long it takes to organise an air ambulance! ¬†Upon arrival at John Hunter Hospital I¬†inquired¬†as to when I would be having the MRI scan, to be told by a nurse “Well it won’t happen tonight, we would’ve had to call someone in!” ¬†Ahhh, hello, what part of EMERGENCY MRI SCAN do they not understand? That’s the only reason why I’m here!!

After a restless night in the ED at John Hunter Hospital watching young, drunk, bashed guys being bandaged up and told to lay down and shut up, I was finally taken to a ward at 6:30am Sunday morning.  And from that point onwards, trying to get home was like trying to break out of Alcatraz!

I was finally taken for an MRI scan at 1pm on Sunday but made the mistake of falling asleep during quiet time and missed getting the results from the scan until much later in the night. ¬†The scan didn’t show anything new and they were now talking about doing a CT scan of my brain. ¬†I explained that I’d had that done in the last couple of weeks at Port so could they get the pictures from there? ¬†That was fine, they would follow that up on Monday. ¬†All day Monday nothing happened – no tests, just lots of visits from various doctors to tell me they couldn’t find anything new. ¬†Monday night I’m told that instead of a CT scan on my brain, they want to do an MRI of my brain, then maybe a lumbar puncture, as the disease could have spread inside the spinal cord and I could be here for another two to three days. ¬†At this point I’m now under two different teams, the¬†Orthopedics team and the Neurological team and you¬†can only imagine the stress that we are all starting to feel right about now – I just want to get home, ¬†Chris just wants me to be at home and Noah saw me at Port Base Hospital on Saturday and isn’t sure where I am right now!!

The MRI scan on my brain was performed first thing Tuesday morning and Chris and Peter (my brother-in-law) drove down from Port Macquarie with a mission to not leave the hospital without me. ¬†The scan didn’t reveal anything and all other neurological testing was coming back normal. ¬†Finally the Orthopedics team gave me the all clear however as only the Neurological Registrar had cleared me and not his boss, I was forced to leave “against medical advice” – what a rebel, hey?

You’ll be glad to know I made it home in one piece and have since seen my local doctors who are working with me on getting what appears to be nerve pain under control.

The treatment that I talked about in my previous post (radiotherapy by injection)  will go ahead at some point, however my blood counts (haemoglobin, platelets and white cells) have been low and these all need to be sitting at normal levels for the treatment to happen. I had a blood transfusion a little over a week ago and that has helped my haemoglobin but the others need to come up as well, which hopefully they will over the next week or two.

We’re all hoping for a quieter week this week……

Love to you all xx L

It’s been way too long….

It’s so hard to believe that my last post was on 31st August. So much has happenend and so much has changed in those 5 weeks and I’m finally at a place now where I am ready to share with you all.¬† Make sure you’re comfortable, it’s a long post.

On 10th September, I finished the third round of radiotherapy, which was targeted to T2-T3 (upper spine), T10-L4 (lower spine) and in front of the kidney. This treatment knocked me around a bit more than the previous ones.  All my side effects were quite delayed with this treatment and made eating and drinking especially difficult for a number of weeks.  As the side effects subsided, I was then faced with a loss of appetite, which is still with me today.  I guess this is just a sign that the disease is active and at some point it was going to happen.

On 19th September, I was back at the hospital to see my Radiation Oncologist, as I had been experiencing bad headaches daily.¬† Mind you, this is only 9 days after the last treatment has finished and I’m¬†really not feeling very flash.¬†My doctor wants to do a scan of my brain and my skull. I jokingly comment that I hope they find something inside the skull!! :)¬† Two days later the results are back and there is a tumour the size and thickness of a 20 cent piece on the left side of my skull, which is growing between the outer and inner bone of the skull strucutre. We talk about treatment, which again would be targeted radiotherapy to the left side of the head.¬† Geez, I’m going to be glowing for sure with all this radiation inside of me!¬† Then my doctor asks if I would think about having another test done.¬† I¬†said it depends on what they are hoping to find.¬† He wants me to have a full body bone scan because his theory is that now the cancer has gone back to the bone (ie, it’s now in the skull), there is likely to be more tumours in my other bones.¬† I’m happy to do this because it means they are actually being a little more proactive, rather than waiting for me to present with symptons and then commence treatment.

On Monday 24th September, I had the bone scan.  This involved having a die injected into my vein, then I had come back 2.5 hours later and have the scanm, which was pretty straightforward Рlay on a bed completely still while they scan from my toes to my skull.

On Thursday 27th September the results are in so Chris and I head off to see the doctor.¬† He explains to us that there are quite a number of “hot spots”, which most likely are tumours.¬† The only other explanation for them is arthritis and after he showed me where they were we knew it couldn’t be arthritis as I have no pain in those areas.¬† So there is activity in the skull, which I already knew, pelvis, ribs, thoracic (upper spine), lumbar spine and left thigh bone, just above the knee.¬† It’s scary to think how active and quickly this disease is spreading, it’s no wonder I feel bloody awful!!¬† My doctor then explained to us another form of radiotherapy, which is particularly good for people with metastatic bone cancer.¬† It’s an internal form of treatment, which involves a high dose radioactive drug given into a vein.¬† The drug spreads throughout the skeleton and is to go to the areas where there is disease and kill it off.¬† There will be a¬†time of isolation afterwards, as I will be highly radioactive but just how long, we don’t know until we meet with the specialist tomorrow.¬†The other good thing about this treatment is that it can be repeated in 3 to 6 months if necessary.¬† We need to travel down to Newcastle tomorrow to see the specialist at the Calvary Mater Hospital and that’s where the treatment would take place as well – it’s not done in Port Macquarie.

That pretty much covers all the boring medical stuff…..

In the last few weeks we’ve been very fortunate to have had lots of out of the region visitors either staying or popping in for a catch up.¬† Thanks to my Uncle & Aunt (Kevin & Marjorie) for visiting.¬† Chris got the opportunity to play a round of golf and didn’t he feel it the next day! I’m glad you guys got to enjoy some yummy desserts at the Rivermark Cafe, while I sat on watching…..(this was the start of my loss of appetite).¬† Thanks to Sandra, David and Hayley, we really enjoyed having you here, it was lovely to catch up and I also learnt that Noah now likes Honey King Prawns!!¬† Thanks to Sue, Kellie and Cheryl for the girly weekend.¬† I really enjoyed your company but geez, it took me a few days to recover.¬† Thanks to Jannah, Sue and Ray for stopping by for lunch, in between destinations.¬† Again, so great to catch up and Jannah, you finally got to meet Noah, even if only briefly (Noah was very caught up with his little girlfriend that lives across the road).¬† Thanks to my Mum and Dad who are staying with us at the moment. They also brought along my little nephew Alex and it’s always nice to see the boys playing together – they really do have a lovely little relationship, despite the fact they don’t get to see each other very often.

I also want to thank our local friends who continue to support us by dropping off beautiful meals.  The freezer has never looked so healthy!

Chris and I made the decision for him to go from full time to casual work with the Good Guys.¬† He now works only one day a week, usually a Wednesday and he applied to become my full time carer, which was granted.¬† I applied for a Disability Support Pension, which was also granted so with this money from Centrelink it means that we’re able to¬†continue living where we are.¬†¬†Since this change back in September you’ll be glad to know that we haven’t killed each other¬†and¬†that I’m so very grateful to have him at home with me, as each day I seem to be a little more weaker than the last.¬† It’s also been very beneficial for¬†Chris and Noah’s relationship with Chris not so stressed and having¬†a lot more time to spend with Noah.

I guess you’re wondering¬†how my emotional wellbeing is.¬† I’ve returned to regular meditation, which makes a huge difference.¬† I always feel relaxed, uplifted, positive and that I can take on the world at the end of a session.¬† There have been a lot of tears shed over the past month but I’m a firm believer that that is also¬†good therapy.¬† The thing that I really struggle with is the physical changes to my body, that’s what really seems to make it real for me.¬† For the last 5 weeks I’ve struggled with the side effects of radiotherapy,¬†a general feeling of unwellness,¬†increased weakness in the legs and¬†loss of appetite.¬† I have come to realise that if I need help, I need to ask for it and accept it.¬† If I can’t do something anymore, like physically pick up Noah for a cuddle, we just need to find another way – cuddles on the lounge are even betterūüôā.¬† It’s extremely frustrating to lose some of your independence but I am getting better at it and I’m getting a lot better at asking for help and accepting help when it is offered.

Finally a big thank you to the girls who came along to High Tea on Saturday.  We had such a great afternoon drinking champagne, eating lots of little sweet treats and enjoying lots of giggles (I think the champagne probably helped with that!). Thanks, Fi, Cristeen, Vicki, Kay, Helga, Melzey, Anna and Mum.

I’m going to leave you with this quote “When I get sad, I stop being sad and be awesome instead!”

Love and best wishes to you all.

L xoxo


Please cancer, give me a break!!

Three weeks after finishing radiotherapy on the area around my diaphragm, I’ve again started radiotherapy on two areas, the upper and lower spine. ¬†After a bit of stiffness in the back and my right hip for the last couple of weeks I took myself off to my radiation oncologist on Monday, hoping that I may have just pulled a muscle while swimming in Fiji! ¬†He ordered an MRI scan for the next day and by the morning of the scan I was not walking! ¬†This was one of the scariest things I’ve ever faced, being totally immobile. ¬†The MRI scan was conducted on Tuesday and I knew straight away something wasn’t right. The scan took a bit longer than they had first said it would and obviously my doctor was there looking on because he ordered to have some more pictures taken under a contrast dye to make sure everything was covered. ¬†My radiation oncologist then broke the new to us. ¬†(Chris was with me as well as Mum & Dad, who had been up for the weekend for a wedding.) ¬†We’ve found 4 new tumours, 1 in the upper thorax of the spine (just outside the original treated area), 2 in the lower spine (lumbar region) and 1 in front of my right kidney. ¬†It was explained that treatment needed to start straight away as one of the tumours was pressing on the spinal cord, which was what was causing my loss of mobility. ¬†So there we were, slapped in the face again with the news that you just don’t want to hear, and really only one of option, which was more radiotherapy. ¬†I know that this is what I am faced with for the rest of my life, the spread of cancer – I’m not stupid or in denial. I would just like it to give me a bit of a break in between to be able to fully recover. Selfish?? I don’t think so!

My wonderful husband has taken the next couple of weeks off work while I undergo treatment and it is so lovely to have him home. ¬†The day to day tasks around the house I’m finding more difficult to do, so to have my very own house husband is just wonderful!!

Anyway, on a much lighter note, we had a wonderful holiday on Treasure Island in Fiji. We had 8 wonderful days relaxing poolside, playing putt putt golf, eating, drinking cocktails and swimming.  It was a wonderful way to recuperate after my last round of radiotherapy, the warmth of the sunshine was so healing, exactly what I needed. Noah had the longest 4th birthday on record, which commenced before we left for Fiji, when he received all his presents from the family. Then on the 3rd day in Fiji, it was his actual birthday where he was spoilt with a big chocolate cake, singing from the staff and lots of kisses from the Fijian ladies. I hope you enjoy the photos!

My first haircut and colour in over a year.

I enjoyed a haircut and colour just recently, the first one since about April last year. I showed a picture to my hairdresser of what I want to achieve and she actually agreed it was¬†achievable, which is a first for me – I usually always want the hairstyle that just won’t work with my hair!

I have to say a big thank you to Lisa, my hairdresser, who painstakingly set foils into my full head of hair. This is a very big job when there is not much hair to work with.

Take a look at the picture of my new hair (it’s not a great photo but you should get the idea) and let me know what you think. It really is nice to have my hair back…..ūüôā

More radiotherapy and other bits & bobs…..

I started two weeks of radiotherapy on Monday. Most of the area that they need to “zap” is outside what was “zapped” back in February. This is good news, as there was every possibility that the new tumour wouldn’t be able to be treated. ¬†The issue was, whether to treat before we go to Fiji or after we return? As the tumour will continue to grow without any treatment it was decided that I could receive all the required treatment prior to going away. I will have my last treatment the morning before we fly out to Fiji and the expectation is that I will experience minimal side effects, just like last time.

The other piece of good news is that the original tumour has not started to grow and remains the same size it was when scanned at the end of treatment earlier in the year.

For those of you who have been following my blog, you will know that Noah was having issues sleeping through the night and I’m very happy to report that after 4 months of walking him back to bed up to 4 times through the night, he is now sleeping soundly through the night. YAY!! This didn’t come without trying lots of different strategies and of course, the reward chart did it. It’s amazing what kids will do for a rewardūüôā

A couple of weekends ago we enjoyed a weekend in the Blue Mountains with family and friends to celebrate Christmas in July. The kids got a visit from Santa and they were in heaven with the lolly buffet! ¬†The same weekend we also caught up with some old friends and it was fun watching all the kids running around together on their property. Noah even got to drive the ride on lawn mower, he thought he was pretty good! ¬†We’ve known this family since I was about 5 or 6 years old so to see our kids playing around, like we used to when we were kids really is special. To finish off the weekend Chris & I with some friends went to see INXS in concert. It was a great way to finish the weekend for a couple of die hard INXS fans!!

I will post some photos later of the weekend, unfortunately I am not that organised tonight.

L xx

The next stage

I received some news today, the kind of news I’ve been dreading. “Your recent CT scan shows a new mass near your diaphragm”. That would explain the pain I’ve been experiencing in that region for the last couple of weeks.

After a couple of weeks of unexplained “new” pain I bit the bullet and made an appointment to see my oncologist. He referred me to have a CT scan so he could see what was going on and the results are in…..

The news doesn’t come as a shock, more of an inconvenience really, I’ve been enjoying life!

So, sometime in the next couple of weeks I will meet with my radiation oncologist who will advise whether or not he can treat the new mass. It will all depend on if the new mass is in an area that is outside the area they treated earlier in the year. As the mass is on the right side of my body and I was previously treated on the left side there is a fair chance they will be able to, but I don’t know for ¬†sure yet.

I continue to fight the fight and keep the faith that a cure or miracle is around the corner for me.

Love to you all

L xx

Quilts 4 Kids

Today I came across this wonderful organisation who make quilts from donated cross stitch squares for children with life threatening or life long illnesses. They are called Quilts 4 Kids¬†and you have to check out the website to see what they’re all about.

These are the types of people that inspire me – those who come up with these wonderful ideas to make a real difference in children’s lives with the simplest of things.

Apparently, the waiting list for children to receive these quilts is currently at 3 months, which means they need a lot more people to sew some squares. I’ve just registered to cross stitch my first square and if you would like to do something for a very deserving child then you should register as well. Don’t worry if you can’t cross stitch, or don’t know how to, this could be the opportunity you need to learn. Since you only need to sew a small square (no larger than 23cm) it’s great for beginners!

SEW….get to it, it will make you feel good!!ūüôā

Yes, I’m still here…..

I know, I know, I know, I’ve been a little quiet on the blogging front lately. ¬†There’s no excuse really, I’ve just been focusing my energy on other things of late. I’ve been doing a lot of sewing and have had a number of orders to get through as well as getting enough stock together for the local markets. This has been keeping me very busy in my spare time.

We’ve also been busy planning a Fijian holiday and am very happy to report that we are now all booked in for a week on Treasure Island in August. We explained to Noah that we were going on a family holiday to celebrate his 4th birthday, showed him the resort’s website and he is very excited and looking forward to it, as are Chris & I. I think Noah is actually more excited by the fact he gets to go on a plane, a bus and then a boat to get to the islandūüôā.

We continue to deal nightly with Noah waking 2 to 3 times through the night and the interrupted sleep is starting to take it’s toll. We’ve pretty much exhausted all our options with different strategies etc so will need to seek some professional help in the coming weeks should it continue.

I had a check up with my oncologist a couple of weeks ago and he’s very happy with how things are going for me at the moment. He applauded me for coming through the treatment so well as according to him, they really hit me hard with the chemo and radiotherapy. There’s no talk of another CT scan at this stage. To be perfectly honest I rather not know what size the tumour is, as long as I’m feeling well then I’m happy and I can get on with my life. I go back to see my oncologist in another 8 weeks but should I not feel well or get persistent unexplained pain elsewhere then I need to see him.

Hope you’re all enjoying your long weekend. Noah & I are sitting here together trying to keep warm. He’s watching the Wiggles while I’m on the computer. While I’ve got this time available to spend on the computer I must sort out the music in my iTunes. I really struggle with this program……I read Steve Jobs’ biography not that long ago and he said that iTunes was one of the most seamless and easy programs to use, of course he’s going to say that since he invented it, but I have to disagree! I’ve had nothing but trouble since converting to iTunes, perhaps one day it’ll make sense to me……

Take care, until next time.

L xxx

Happy Birthday to Hubby!

Today we’ve celebrated Chris’ birthday and I can’t actually recall the last time he didn’t have to work on his birthday….

We’d had wonderful plans for the three of us to go for a picnic since the weather had been so good over the last few weeks. “Had” being the operative word because today was one of those cold and dreary rainy days.

Anyway, I will summarise Chris’ 39th birthday for you and you can decide if he’s one lucky bugger or not.

Chris woke up in bed by himself. I was asleep with Noah in Noah’s room (no, things have not improved with Noah’s constant waking) and as soon as we woke Noah remembered that it was Daddy’s birthday. “Let’s go and jump on Daddy and yell, wake up Daddy, it’s your birthday!” Noah says to me, so that’s what we did. Then of course, according to Noah, it’s time to open the presents. When you become a parent, gone are the days of opening your own presents, or blowing out your birthday candles…..So, Noah opened all Chris’ pressies. Chris then asked Noah if he knew how old he was today, to which Noah replied “no”. Chris then tells him, “Daddy’s 39”. Noah had a very surprised look on his face and said “are you tricking me?” No, Daddy’s 39…..

I make Chris a coffee, he’s still in bed. Then he gets up and makes us all breakfast. I realise when I’m eating the breakfast that has just been cooked for me, that it would’ve been nice if I cooked it. So to make up for it, I clean out the cat poop from the litter tray in the laundry!

After brekkie, I get ready to go to my former workplace to do some consulting work and Chris is in charge of taking Noah to his swimming lesson.

Since the picnic idea was washed out with the rain, I buy fish and chips and a birthday cake on the way home. Upon arriving home I find that Chris has set up the Playstation 3 (the birthday present) and is trying to beat Michael Schumacher at his own game!

The rest of the day is spent with Noah hanging off me while I’m trying to sew, because I haven’t got any stock for the markets that I’m supposed to be selling at in a little over a week, and Chris playing the Playstation….

Happy Birthday honey, love you loads. You don’t look a day older since the day I met you back when we were 32! xxx


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