Neptune Weighted Blanket Review!

Well I should really call this “the sleeping blanket” !!!! For me anyway!!

I’ve had this for a week and all I’ve done is SLEEP!!!!!

Traditionally with the situation I’m in, this amount of constant daily sleep could mean end of life HOWEVER people wouldn’t lay under it all day, every day anyway, unless you’re unwell and in that case it’s a good thing anyway.

AND I checked with my palliative care doctor who reminded me how little sleep I got when i first entered the hospice!!! I’m coming up to being here for three months now can you believe, with doctors not expecting me to see Christmas! So I’ve been very sleep deprived! So he said don’t worry about all the sleep as I obviously need it.

Back to the blanket… 

PROS: sleep sleep sleep! If you’re having trouble sleeping: HIGHLY RECOMMENDED!!!!!! 

I’ve definitely noticed a change in my mood and I’ve not been so aggravated or easily irritable, much more calm and less stressed this week. Less of a bitch if we’ll say it how it is haha! I’m more at ease.

Extremely comfortable – they truly are like a big hug! It’s even highly improved all the fluid retention in my legs due to my kidney failure!

Comes with a winter mink style cover however you can buy a 100% cotton cover separately (extra cost) for summer months.

Covers can be removed and machine washed.

CONS: i have the summer cover on but out of 7 nights I’ve had to kick it off me 2 of those nights as it made me way too hot. Keeping in mind i live in Adelaide and we’ve had some 40+ degree celsius days lately/heat waves so it’s inevitable really.

There are so many on the market (i purchased mine online) and they are quite pricey so you really need to have a good think about what you need it for.

Sleep✔️

Stress✔️

Anxiety✔️

Comfort ✔️

Option to buy summer cover ✔️

RECOMMENDATIONS 

🔶 Use their recommended weight chart! Can’t stress that enough! The charts are so important!

🔶Do NOT go heavier than your recommended weight thinking It”ll work better – it won’t.

🔶Do NOT go lighter because you’re worried about weight. If you’re worried, it won’t be right for you.

🔶I got a 5kg and I think it’s important to realise you won’t have that entire 5kg on one single spot of your body, that weight is dispersed throughout an entire single blanket.

🔶I could only find SINGLE SIZES. Which is fine with me considering I’m living on a hospital mattress. 

🔶I bought mine from Neptune  Blanket:

https://www.neptuneblanket.com.au

🔶Purchased on the 17th December 2018 and not received until the 7th January 2018 which was too long in my opinion (i’m impatient yes haha). They didn’t reply to emails but I’m also mindful of the fact it was the Christmas period and part Christmas office closure.

🔶To be completely transparent, this was NOT GIFTED to me by Neptune, nor “sponsored” or any of that stuff. I’m just a simple gal who as you know likes helping others and raising awareness. If I find something that may help others, I like sharing.

love Sherie

xoxoxox

Why you shouldn’t take the Festive Season for granted.

The festive season is a joyous occasion for many people each year, myself included.

This year however, my “mojitos” have been ice chips with fresh mint leaves, and time spent with my family sitting alongside my bed in the Hospice whilst we all sit and play that agonising waiting game for me to slowly pass away.

On the 22nd November I called an ambulance and taken straight to emergency. I was completely out of breath and shaking like a leaf. I already knew that I had Stage 4 Bowel Cancer. It was diagnosed as Stage 3 around this time in 2013 at only 31 years old. I am only 36 years old and genuinely thought that I had a lot more fuel in my tank, so to speak.

Instead, I have been in the Hospice for over a month now. I have a Christmas tree and decorations set up, and my cat has been given permission to live here with me.

Unfortunately, I’ve had to make a decision to limit my time on my personal social media platforms like Instagram and Facebook. Whilst these platforms have given me a great outlet to spread awareness of this deadly disease, and provide updates for family and friends, during the festive season it is incredibly difficult and tiring to continue in my quest to raise awareness when many people are so pre-occupied. I don’t begrudge them for that, it is meant to be “the most wonderful time of the year” after all.

In the four weeks I have been in here, I have had approximately seven blood transfusions, and have continued to use my social media platforms to encourage and recruit blood donors, no matter how miserable I have been, I have still felt somewhat responsible for raising awareness and trying to get people to do more in aid of people living with cancer.

Whilst in the Hospice slowly fading away, I have managed to help a friend raise over $2000 for his fundraiser for Cancer Council and I have raised more awareness of the need for more blood donors. I have even recruited some brand new donors and reminded old donors to head back to the Red Cross and start giving again.

I don’t want a pat on that back for this, or any sort or reward or parade of honour, I just want to show people that no matter what position you’re in, you’re always in a position to give back.

I have been trying my very best for the past five years since my first diagnosis to be real, open and honest about every facet of this disease, but I am tired.

This time of the year is making me even more tired. My life, my world, it has stopped, it is completely on hold, whilst everyone else’s continues as normal. I would never wish this on anyone, yet I lay here on Christmas Eve still unsure whether I will be able to leave here for a few hours tomorrow to spend Christmas Day with my family.

The main premise here is to give as much as possible, especially at this time of the year. It doesn’t have to all be materialistic – sometimes a listening ear or checking in on someone you haven’t seen or spoken to in a long time means a lot.

But mostly: be GRATEFUL. If you’re happy, healthy, smiling, and getting excited and ready for the big day tomorrow, you have so so much to be grateful for and enjoy it.

What would you do, if this was your last?

What if you knew that certain moments and special occasions would be your last?

Life is so precious, yet so fickle. Some people get prior warning that they’re living their last moments, some people do not. What if you had prior warning? Would you change anything?

Would you change your perspective on life? Your priorities? Your attitude? Think about it. What if this would be your last Christmas, your last birthday, your last family holiday? What if you knew you would never be able to complete all you wanted in life?

It’s a really shitty and traumatic thing to have to constantly think about, isn’t it? Unfortunately, it’s something that plays on many people’s minds on a daily basis.

Will I ever see another Christmas!

Will I ever write a date with 2019 on the end?

Will I forever be 36?

Will I get to celebrate another family member’s birthday?

The “Will I??” list seriously goes on.

I’m not writing this to get “thoughts and prayers” nor receive comments like “stay strong” and “keep fighting”. What I truly want from you all is to live your lives to the best of your ability.

Sweating the small stuff? Let it go.

Stuck in a dead-end job that’s making you miserable, sick and affecting your quality of life? Leave.

In a relationship or friendship that’s making you unhappy, trapped and unfulfilled? Leave.

Feeling as though your life isn’t quite going down the right path, or that you’re struggling with something? Don’t be ashamed to seek help.

Go on that holiday you’ve been dreaming of!

Treasure each day and each moment as a gift, because that’s what it is. Our days, moments and lives are a gift, treat them that way because you never know when they will be taken away from you.

Please stop telling me to “keep fighting” – PART TWO.

When I looked back on my blog posts to see that part ONE of “Please stop telling me to keep fighting” was written over a YEAR AGO now, I couldn’t believe it. If you’re new to my page or missed the post, you can catch up and read part one here:

Please stop telling me to “keep fighting”

It’s crazy to think that after a whole year of fighting fighting fighting, I am still here.

Since my CT scan in April and my colonoscopy in May, with both results showing that I am “stable”, we would all like to HOPE that things would be on the improve, that this cancer life would give me a bit of a break, right?

Wrong. In the space of two months, I’ve had four… yes, FOUR pretty severe partial bowel obstructions, through no fault of my own (no, I didn’t eat something I shouldn’t have). So what causes a partial bowel obstruction if it isn’t the food that I eat? It’s the internal scar tissue, also known as adhesions, that is the issue. When someone has been operated on countless times – and we’re talking full open abdominal surgery here – there’s going to be a lot of internal scar tissue. I have lost count of the amount of times my abdomen has been completely opened up, my insides taken completely out, operated on, pieces cut out, then put back in and stitched back up again.

This scar tissue likes to the attach itself to the bowel, causing an obstruction, and causing the type of pain that I cannot even begin to accurately put into words and describe to you. I like to think that I’ve developed a pretty high pain threshold these days, so even if I were to try and describe it, I wouldn’t do it any justice. It is unbearable, I cannot even stand up straight – let alone stand up at all when I’m in this amount of pain. The best way I can describe it, is like someone has both their hands wrapped around your bowel and they’re giving it a chinese burn – they’re twisting it and twisting it and you feel like your insides are going to either implode OR explode.

So painful bowel obstructions and vomiting up bile are now on my list of things to deal with on a regular basis these days. They occur without any warning whatsoever, in fact I have been at work some days feeling completely fine, and then I’ve gotten home and then that night, it hits me… and they will stay for however long they want. Sometimes they may stay for two or three days, sometimes they may stay for a week to 10 days. With that, follows dehydration, zero appetite, malnourishment and a bevy of other things. Sherie – you should continue to fight those regular bowel obstructions, no matter how much pain you endure and no matter how malnourished they make you and how much they emotionally drain you – you should still be fierce and continue to fight them… NO THANKS.

In comes some newfound pelvic issues, which I don’t want to delve into too much right now because I am still uncertain what exactly is going on. However, these issues include more pain, more discomfort and more soul destroying emotions… but Sherie, you should still be fierce and fight this as well as the bowel obstructions… NO THANKS.

It’s now been four and a half YEARS jumping hurdles. If you had to jump hurdles 24/7 for four and a half years, you’d be tired too right? I know that people mean well, and I know that people don’t often know what to say, but simply expecting someone to “keep fighting” when you don’t know or understand even half of what they’re dealing with, when they can feel that their own body is struggling, it puts us between a rock and a hard place. We ARE fighting, we HAVE been fighting, constantly, 24/7 since the day of our diagnosis.

Nor is cancer ever about giving up. None of this is about giving up. We get thrust into a new world that we had no say in. We are forced into a life shattering situation that we didn’t sign up for. There is no “giving up” when cancer is concerned. We do the bloody best we can given the shitty cards we’ve been dealt.

No one lives forever, but those with cancer, many will have their lives cut short through absolutely no fault of their own. NOT because they gave up, and most definitely not because they “lost their fight”. Nothing makes me shudder more than hearing or reading that someone “lost their fight to cancer”. To me, it is one of the most degrading and devastating things to say to farewell someone who fought like fucking hell to stay alive but their body had other plans. We don’t want to be farwelled and considered as “losing”. We have absolutely no control over what our bodies are doing to us – this is not a win/lose situation here, it’s about trying to make the best out of what we’re given.

In a perfect world, cancer (or any debilitating illness or disease for that matter) wouldn’t exist. We would all be fit and healthy and living happy lives… but that isn’t reality. Cancer DOES exist, this is NOT a perfect world and no one truly knows how long they have left on this earth.

So before you whinge and moan about something petty that your partner/husband/wife has or hasn’t done… be grateful you have one. I unfortunately will never experience true love or marriage. Aside from my family, I will never know what it feels like to have someone love me so deeply and with every ounce of them.

Before you whinge about what little shits your kids have been today, be grateful you have them. I, along with many others, have had motherhood stripped away from me.

Before you whinge about bad traffic, queues at the supermarket, or how cold it is, be grateful you are living a normal life and haven’t been curled up in bed all day with pain and nausea wondering “when does this stop?”.

So please…please, choose your words carefully. I know everyone means well, but sometimes the purest of intentions can make someone unwell feel more shit than they already do. It’s been four and a half years and I am allowed to be tired. My mind, body and soul is so very tired and all I really need or want is your love and thoughtfulness, that’s it. You don’t need to say a thing, other than that you’re here for me and respect whatever decisions I make moving forward.

Thank you… love Sherie xox

Life after cancer – now what??

There’s one thing I find people don’t often hear about or speak about is what is life like after cancer treatment?? What now?? It’s something I’m really struggling with at the moment and it is likely the root of all my stress and anxiety right now. What should I be doing with myself now that my tests, scans and appointments are slowing down?

Photo: a pretty standard day for me as far as stress goes! (stats via wearing my Garmin watch daily).

It’s been almost 4 and a half years since my first diagnosis and almost 1 and a half years since my second diagnosis. The fact that the whole of 2017 was a write-off and that the beginning of 2018 was a little sketchy at times (and still is somewhat) is what makes life really hard to move forward.

Whilst my life had stopped on many occasions, to have surgeries and undertake treatment etc etc… everyone else around me, their lives continued as normal. There has been a huge loss of quality of life, I’ve missed milestones with the ones I love, and not being able to see my friends as much as I would like, has put me out of the loop and it’s overwhelming to try and play “catch-up”.

People don’t talk about it because it’s hard to articulate how difficult it is to get back into the real world once treatment has finished. Friends drop off, so you have to come to terms with the fact that the people you spent a lot of time with pre-cancer, are no longer around.

But in saying that, because of cancer, new people have stepped into my life and I am so grateful for everyone that has reached out to me recently, it’s meant so much. I’ve formed new friendships and I am slowly starting some new beginnings.

There are however some lyrics in my favourite song right now that ring so true to me: “My whole life I feel like a burden, I think too much & I hate it”… that’s exactly how I feel, I don’t want to burden my friends and family, and I have to remind myself that I do deserve happiness and great friendships, I also deserve to be loved.

I’ve taken a big step back into normality by returning to work, which I am really enjoying because I have a great supportive team around me. I started back at work in February just doing 2 x 4 hour shifts a week, now recently I have added another 4 hour shift to my week, so I’m getting there, slowly but surely.

But still… life isn’t the same, and I don’t think it ever will be. How can you simply move on and put 4 and a half years of trauma behind you? And the fear of my future and the fear of the unknown? There are no rule books telling you how to get back into “living” again. Everyone is different so what may work for one, may not work for another.

All I’m going to say is that it’s hard, very hard. I won’t sugar coat it, some days can really suck sometimes. There are days where I’m feeling me again; alive, well, happy! I walk along the boardwalk by the beach, which is my happy place, nothing beats that fresh sea air… but there are still those darker days (like today for example) where all I feel like doing is laying in bed watching Netflix or Foxtel on my iPad and not facing the world. I do not have children, nor do I have a partner, so I don’t even have that daily motivation in my life to get myself up and about and spend my day with my family.

Photo: my bed buddy, Hudson.

It takes time and it’s hard, very hard, especially when at times I’ve mustered up the courage to put myself out there and have asked for some company but I’ve been knocked back, or ignored, for reasons I do not know.

However I will always refer back to my two all time favourite quotes:
HOPE: hope for a brighter day and a better future.
YOU’VE GOT THIS: sometimes I feel like I haven’t, but I do, I’ve been knocked down more times than I can recall, but I’ve always gotten back up again.

You’ve got to always get back up again, no matter how hard it may be, it’s the best thing that we can do to keep on keeping on.

Did I really just meet Ed Sheeran??

Did I? Did that really happen, to me, of all people?

As most of you are aware, I am currently fighting my second bowel cancer diagnosis. I am entering my fifth year fighting this insidious disease and I have only just turned 36 years old. Over four years of complete and utter crap – again, pun intended – and that’s not even counting the fight I’ve had against Crohn’s Disease since I was 15 years old. I no longer know a life without illness. A life of “normality”. An everyday person’s “bad day” would probably be one of my good days.

Anyway, 2017 was a complete shit show – pun intended. However, entering 2018 I felt I had a new lease on life, it genuinely felt like things were improving and we were getting on top of everything, in particular the infection that tried to kill me over the Easter long weekend last year, and has seen me on daily antibiotics for almost a year now. I even had the words “you’ve got this” tattooed on my arm the day before my birthday in early January. I wanted and needed that constant reminder that yes I do indeed have this under control.

Photo: my new “you’ve got this” tattoo.

I can’t even accurately convey to you the level of mental toughness that you need to fight cancer. Physically, the human body is amazing when it comes to healing itself after such trauma. Yes we still endure many life-long side effects however, if you saw me on the street you would have no idea I am fighting cancer, Crohn’s disease and chronic infection. If you had a conversation with me, I will rarely bring it up.

However the mental aspect of fighting cancer, to me, is far more difficult and a lot harder to repair. I entered 2018 thinking I had this in the bag, that 2018 was going to finally be MY year, a year filled with fun, making happy memories and finally some good health… well as good as it can be considering.

Halfway through January, it was time for me to stop the antibiotics to see how I would go. I had two weeks off antibiotics before I fell ill again. So back onto the antibiotics. I finished a one week dose, then this time I only had a mere three or four days off before I got sick yet again. I took another one week dose and once again, when that was finished, I was sick within a matter of days.

It’s looking like I will never be able to get off antibiotics because it appears that this is what’s keeping me alive and well right now. So why don’t I just continue on long-term antibiotics? Good question… for starters, I’ve already been taking them regularly for almost a year now. Eight of those weeks were IV antibiotics administered 24/7. So as you can see, it’s been a long and frustrating road.

Long-term antibiotics come with their own issues too. They damage an already damaged gut (yes I am taking a probiotic) and eventually I will develop a resistance to them. So it’s currently all about choosing the lesser of two evils right now.

So where does Ed Sheeran come into this?
Because he is one amazing guy, that’s why!

Back in May 2017 I was laying in bed, unwell (nothing unusual) and was in an online queue for roughly four hours in an attempt to secure four tickets to his show in Adelaide in March 2018. I didn’t think I’d be successful, but I was, and that alone made my day!

Fast forward 10 months and his concert was approaching, however I had not been in a good way, both mentally and physically. A couple times in the month of February I genuinely believed I wasn’t going to make it to his concert, mostly because it felt like my body was slowly starting to shut down… it still feels that way sometimes. Knowing his concert was coming up was a huge motivation for me to keep on keeping on.

I was (and still am) so sick and tired of being so sick and tired!! Someone in my medical team hasn’t been filling me with much hope for many months now. Some would say she’s a realist and that’s fine, we need to know the truth when it comes to situations like mine, but it got to a point where I felt we were no longer on the same page. She continues to tell me that I need more surgery, however both my surgeon and I have agreed to not operate again. It’s not this specialist’s choice to make regarding surgery, she’s not the surgeon, so it’s really difficult for me when we’re not on the same page regarding so many things. Without going into too much detail nor airing too much dirty laundry, I decided to part ways with this particular specialist. I need someone who I feel is on my team and someone who actually listens to me and believes me. We put our lives into these doctors hands, we are forced into trusting them to stay alive, so when something doesn’t feel right, it is incredibly scary and stressful.

So I’ll be first to admit that I have been struggling… heck, I’ve been struggling since I was 15 years old when my Crohn’s disease diagnosis came through. I honestly don’t remember a life without chronic illness.

Again, where does Ed come into this? I suffer severe insomnia and one night whilst wide awake in bed at probably 3am, about a week before his Adelaide concert, I had an idea… maybe I can try and find someone to organise a meet and greet between he and I… that would most definitely give me the lift that I so desperately needed and wanted. I’m responsible for my own wellbeing and I need to focus on doing things that keep me happy and motivated.

In the 21 years of having severe Crohn’s disease and just over four years of bowel cancer, I’ve not been one to put my story out there purely for any sort of gain, other than to raise awareness and to try and reduce the risk of this happening to anyone else. I have not allowed any GoFundMe’s in my name, ever. There have been no Facebook posts asking for help – other than donations to charities or to share my blog to spread my story for awareness. I don’t hint for freebies… I simply do not and will not use the “cancer card” for any sort of personal or financial gain. This is in no way a criticism of others who do things differently than I, but I just wanted to give you a brief understanding of the type of person that I am… many would call me stubborn and I would say that is spot on.

So how was I going to try and go about this wish of mine when it’s not in my nature to tell someone my sob story to personally gain something out of it? It was hard. I spent ages drafting an email that I felt comfortable with, and in the end I decided to keep it simple. I wrote a brief outline of my situation, said that I had already purchased tickets so I wasn’t asking for anyone to buy them for me. I added the links to my blog page and my Facebook page so they could see that I am genuine, and all I did was ask the question: can I please meet Ed? It was as simple as that. I didn’t beg, I wasn’t over the top, (if anything I played my situation down a bit) and sent it to as many people I could think of: radio stations, charities and tour promoters etc etc…

I will apologise in advance that I won’t be disclosing publicly who ended up responding and organising it for me. I don’t feel it’s appropriate to pass on personal details especially when Ed is still currently in Australia and no doubt would receive thousands of these requests per show. Considering the type of requests that they would receive, I almost felt not worthy of this amazing experience.

So yes… it happened, it actually happened, and I still pinch myself to this day, and look back at my photos to make sure it wasn’t a dream.

I arrived at the venue at 5pm, with my Mum and two sisters. Considering all four of us had purchased tickets and were going together, it was unforgettable that we all experienced this together. At around 6pm the dream came true. I was in a small group of approximately 16 people, most of which were young children that are unwell, and their parents/guardians. We all had our own time with Ed, I can’t really tell you how long I spent with him, nor what we talked about, because it’s all such a blur. What I can tell you however, is that the way he comes across in the media, is exactly the way he is in real life.

He’s normal, he’s down to earth, he’s humble, he’s kind, he’s everything I had expected – if not more – plus he genuinely loves his fans. At the Adelaide concert there were fans camping outside the venue for days in advance, to make sure they got prime position! Ed organised for pizzas to be delivered to them. That act of kindness toward his fans doesn’t even scrape the surface.

Due to the fact his music is all on my phone, I decided to ask him if he would sign my phone, and he did, check this out…….

I love how he put an Aussie spin on it (you’ve BLOODY got this) and that smirk on his face while doing it……..

Once our meet and greet came to a close, my mum, sisters and I went to have dinner, then we returned to watch his show. WOW! I can’t even do him justice by accurately conveying to you how incredible his show was. Just wow! I was in awe for the entire two hour set, singing my stone cold heart out.

I returned home that night absolutely buzzing and on such a high, as well as the day after. I’m not much of a concert-goer because I don’t like crowds, and I don’t particularly like anyone enough to pay $100+ per ticket, especially with my health being so up and down and unpredictable. However Ed is an exception, I would see him perform again in a heartbeat. I would battle Adelaide’s 65,000 strong crowd again to see him.

It has taken me over a week to write this blog post because it has taken me this long to comprehend what actually happened… I ACTUALLY MET ED SHEERAN!!!! The memories will last forever and it felt beautiful to finally experience pure joy and happiness again. Thank you Ed xox

How did re-decorating my living room help with my cancer recovery?

 

When I posted an update to my Facebook page the other day about re-decorating my living room and how much it has helped my recovery, I’m sure I had a few of you scratching your heads wondering “why/how??” … because I would’ve had the exact same thought myself. How on earth does re-decorating a living room help aid in the recovery of cancer???

As many of my fellow cancer warriors would know, and anyone who’s been touched by this disease in one way or another, know that cancer isn’t just a physical battle, but it’s just as much a mental battle too.

The human body can heal and it can bounce back from so much trauma, albeit not completely and many of us are left with permanent scars and other ong issues as a result of surgeries and treatments.

However, no one really speaks too much about mental recovery and how it is just as important and just as challenging as your physical recovery. I couldn’t tell you how many times this year my head wasn’t in the right space and that’s what stopped me from doing many things… it wasn’t always the physical restriction but the mental restriction. I couldn’t tell you not because I’m ashamed, I’m in no way ashamed to admit that I have struggled, I think anyone with two cancer diagnosis’ would struggle, but I couldn’t tell you because I simply lost count. I had lost count because the mind and the body constantly wanted different things and it was very damaging and incredibly frustrating not knowing which one to listen to. On one hand, my body wanted to get up and moving but my mind preferred the comfort of my bed, and at one point I was quite OK with being a recluse. But on the other hand, my mind grew sick and tired of being that recluse and I desperately wanted my life back, but my body and the cancer simply wouldn’t allow it. It was a constant battle between the two, and very rarely did they both align and want the same thing

So how did re-decorating my living space help both my mental AND physical recovery? I touched a little on this in one of my live videos on my Facebook page but I will go into a bit more detail here.

Back in September 2013, I purchased and moved into my very own home. I had been renting for several years and decided to take the leap and buy my first home.

Photo: when I just moved in, this is all I was really able to do. Boring.

 

 

Photo: Then Caroline got the ball rolling and brought in a new coffee table set, rug & bits & pieces to make it look more homely.

Unfortunately, just three months after moving in, my first diagnosis shook my world… Stage 3 Bowel Cancer. Things were bad, very bad, to the point where I required three major surgeries (one was an emergency operation on New Year’s Eve – great way to ring in the new year hey!) between December 2013 and March 2014. I hadn’t even fully recovered from one operation before I was being wheeled in for another. I was so unwell I had to move back in with mum and dad and live with them for at least six months. So I only got to enjoy my new home for three months before cancer kicked me out… what a jerk.

It did cross my mind that I may have to consider selling my beloved first home thanks to this insidious disease. I was unable to work, I knew I had a long recovery ahead of me and I knew I had intensive radiotherapy and chemotherapy “to look forward to*” (*sarcasm) in 2014. I was going to use up all my annual leave and all my sick leave pretty quickly, so how would I pay my mortgage? I had a couple friends offer to start up a “Go Fund Me” page, however still to this day, four years after my first diagnosis, I’ve never allowed one. Stubbornness is in my genes, I don’t like asking for or accepting help, especially financially.

To try and cut a long story short, I was able to keep my home and I moved back in shortly before my chemotherapy commenced in June 2014. I spent six months having weekly chemo infusions and I was sure the chemo would kill me before the cancer did. All I can remember is coming home from my chemo infusion every week, parking myself on my recliner and not moving until it was time for bed.

My chemo made me very ill. I think at one stage I had gotten down to a very unhealthy looking 48kg’s. At 167cm tall, I looked like a skeleton. I couldn’t eat, I was pale and lifeless, I felt sick all the time, I had this constant nausea that never went away, not even after taking the most expensive anti-nauseant wafer especially for cancer patients.

So for six long months, I lived on my recliner watching TV. That was all I could manage. The only memories of my living room were those: feeling sick 24/7, certain that I was slowly dying, nauseated, fatigued, lifeless, and just over it. Great memories to start with in a new home hey??

When I finished and recovered from treatment and returned to work, I carried on with my life the best way I knew how, and I was doing a damn good job of it if I do say so myself.

Then my second cancer diagnosis came along in 2016. I needed more surgery, which meant I had to go back to living at my parents place for several months. I returned to my own home again but it wasn’t until September/October 2017 that I really noticed a terrible shift in my wellbeing and thought “I have to do something about this… but what?”. I was still unwell and still in chronic pain so what was I supposed to do? From when I had surgery in November 2016 to October 2017 (yes, almost a year!!) I spent my days in bed. I’d say I was about 95% bed bound for 11-months, only really leaving the house to attend doctors and specialist appointments and my hyperbaric treatment.

When I started to slowly feel myself getting better, I knew I wanted to move out of my bed and into my living room. If not for the sake of my own sanity, but for the sake of my mobility and my neck, back and spine. My body had gotten so used to me laying down and not used to supporting my body weight, that even sitting upright was difficult.

So I decided to completely redecorate my living room and encourage myself to get out of bed and sit up in there and retrain my body to be upright again and not laying down. I wanted to bring in fresh memories, ones that I didn’t associate with cancer and chemo.

Photo: sold the leather suite for something completely different & added a new print. Modern with colour.

 

My best friend got the ball rolling and bought in a new coffee table, rug and other bits and pieces. Then I sold my barely used leather lounge suite to a lovely family, and with that money I purchased something completely different. It opened up my space so much and made it a lot more lighter and brighter. I hung a new print, added a fake plant, new cushions, some wall art and other bits and pieces and I was done… the re-vamp was complete and it looked nothing like how I remember it, and that’s exactly what I needed.

So the recovery here was removing old memories and creating a new space that was modern, had colour, and somewhere I actually wanted to sit in without always thinking about chemo. Four months ago I wouldn’t have been able to sit through a movie, now I can sit through a two hour dinner and a two hour movie back to back!

Recovery starts the moment you wake up and get out of bed. If you’re waking up and never getting out of bed, you’re not going to get anywhere. Yes, I was very ill for a long time and couldn’t physically get out of bed for the majority of 2017, but as soon as I felt I was ready and as soon as I knew I had a nice bright new living room to walk into each morning, my days no longer needed to be spent in bed, and that was the start of my recovery. Soon after that, my regular beach walks commenced, I saw an osteopath once a week for six weeks to realign my posture, and now I’m doing some gentle restorative yoga.

 

It may seem strange to some, that something as simple as a new living space has made such a positive impact on me, but hey it’s worked and that’s all that matters to me.

Cancer and the gradual (yet confronting) demise of friendships.

Since going through my second cancer diagnosis, I seem to have perfected the art of losing friendships. I could now count on one hand the amount of close friends that I have left.

Whilst I am fully aware that friendship is all about quality not quantity, I just wanted to share a couple of my own experiences as I think it’s important for people to realise that just because I (or anyone else for that matter) have cancer, it doesn’t mean I cannot still be your friend. The things you loved about me pre-cancer, are still there.

Sure, I will admit that there are many times I have had to cancel or reschedule plans, or I am going through long periods of recovery time and can’t see you at all, but it’s not due to me being lazy or being a shit friend, it’s because I’m fighting to stay alive. I am very open and honest about my situation to those closest to me, so if you want or need to know something, I always tell you how it is.

With the vast array of communication tools these days, it’s usually by choice that someone has dropped off the radar. I make a conscious effort to stay in touch on a regular basis with the ones that I love, but friendship is a two-way street, if I’m not getting much from you then you’re not going to get much back from me.

I don’t consider myself to be a high maintenance “sick friend”. I don’t ask anything of anyone – I even struggle to ask my parents for help!! I don’t believe that I am “draining” to be around or to talk to, I am still that same person that brought us together as friends in the first place. I am still me, I just have some extra priorities lumped on me right now.

After my first diagnosis, people slowly started to drop off because I could no longer go out with them. My days of partying and drinking every weekend were over, so I guess that helped seperate the friendships based purely on partying from the friendships based on genuine love.

When I started to recover from my first diagnosis, I actually had to ask to be invited to things again… several times. I would openly put it out there, that I wanted to be invited to catch-ups again, but somehow my message never really got through, and I continued to be left out.

I also had a weird situation when a person I went to high school with some 10+ years ago came out of the woodworks and wanted to be there for me. I thought it strange at first, as we were never friends in school and hadn’t seen one another since we graduated, but she was persistent and desperately wanted to do nice things for me and I thought OK, I am losing friends to cancer so maybe I should allow myself to gain friends due to cancer. This new friend of mine was absolutely fantastic during the first 18-months fighting my first diagnosis and we soon became very close friends. Shortly after I returned to work part-time and I was improving each day, she dropped off the face of the earth and stopped replying to my messages. I still to this day have no idea what happened.

Similar situation with another high school friend who I had met in year 8. We had been such close friends all throughout high school and in our 20’s. We basically grew up together and then one day he just stopped replying to me, ignored my calls and then blocked me on all forms of social media. Again, to this day, I still have no idea why.

Most recently, whilst trying to enjoy my family holiday in Noosa, a holiday I wasn’t sure I’d even make, I was again blocked, deleted and ignored by someone who I considered to be one of my best friends. A friend who I spoke so highly of, a friend who I spoke to and laughed with daily. It was the sort of friendship where we both shared our deepest and darkest stories and secrets. Friendships like that don’t come around very often so I truly cherished that one, but I somehow lost it… and again, I don’t know why.

I of course understand that life gets busy, and I never expect much of anyone, but I will never understand why someone will let a cancer diagnosis tarnish a wonderful friendship. This is a time when cancer patients need their friends the most, and it’s something that you can’t really come back from. How does that age old saying go? If you can’t handle me at my worst, then you don’t get me at my best? It rings so true! You can’t drop off the radar when the going gets tough, then reappear when things are improving, it just doesn’t work like that.

But this is not a “woe is me” post, it’s more so another awareness post, true friends don’t let friends fight cancer alone.

I would however like to finish this off with some positive friendship stories! I have many stories that I won’t even be able to scratch the surface, but I do like to try and remember the positives more than the negatives.

My friend who went and had her first tattoo… a “hope” tattoo to match the one that I got two years ago. We are HOPE sisters for life! She also surprised me with a newly decorated living room that she sneakily arranged whilst I was in Noosa! During my first diagnosis she organised an amazing gift which included a Flight Centre voucher because she knew how much I wanted to go to Fiji to relax and unwind. She has sent me heartwarming videos and gorgeous paintings from her beautiful children, when she knows I am having a rough time. I will never forget being in hospital with sepsis and waiting and wanting to die, when I received a video message from her daughter telling me she loved me and it still to this day brings a tear to my eye. Also simple things like passing on her magazines and tagging me in things online that she knows will make me laugh.

Friends who have baked me delicious sweet treats and scooped me up for the best beach picnics ever! Friends who at the drop of a hat, will rearrange their day so that they can see me because I have woken up one day having a rare “good day” and want to get out of the house for a few hours. Friends who have taken me out for my favourite sweet treats when I’ve actually had an appetite.

Friends who are interstate and have always welcomed me with open arms if I’ve ever needed a quick get away.

And friends who have been consistent and stayed in touch. It doesn’t have to be daily or even weekly, but consistent contact doesn’t go unnoticed. I find happiness and appreciation in the smallest things.

We all know and understand that life gets busy, but don’t forget why you were drawn to our friendship to begin with. Of all things, don’t let something like cancer have even more power and break something that was once so wonderful. Cancer has done enough damage, don’t give it anymore power. #fuckcancer

 

The importance of family holidays when you’re chronically ill

I’ll admit, initially I was going to keep my recent family holiday a secret. I was worried about being judged:
“You can’t be too sick if you’re flying interstate for a holiday”;
“If you can go on a holiday then you can go back to work”… etc etc… I was pre-empting and worried about other peoples thoughts and opinions and I’m not sure why.

Photo: Sisters

I know I don’t need to justify myself to anyone but have decided to write this blog more from the perspective of someone who is chronically ill, and I’m sure many others in similar situations can relate. Also to give those who aren’t unwell, a bit of perspective and understanding of how important it is for people like myself to be able to get away from their day to day existence and actually be able to experience a life and create happy memories with family.

Photo: Me, Mum & Dad – not in a doctors office for a change!!

11-months yesterday, on the 29th November 2016, I was wheeled into the operating theatre with the impression that I would only need 6-8 weeks to recover from surgery after my second cancer diagnosis. Eight hours in surgery (my biggest one yet!) and a week in ICU and another week in the surgical ward, I was sent home still under the impression that I would be back at work within 6-8 weeks.

Photo: Me, sister & brother in-law for Dad’s 70th birthday.

As we all know, things for me did not go to plan post-surgery and I am now 11-months into my recovery. My life is essentially in limbo. I still have cancer and I am in daily chronic pain with a surgical wound that still hasn’t healed and is still susceptible to sepsis. I have tried every avenue to get myself back to my pre-cancer days, but in reality, I will never be that person again. So I have had to accept a new normal. I’ve been thrust into a life that I did not choose, but hey, that’s life isn’t it, that it doesn’t always go to plan for some.

Photo: Me at Eumundi Markets with my friend Zarah who I hadn’t seen for SEVEN YEARS!!

My new normal, has seen me spend almost a year being consumed with complications, infections, medical appointments, treatments, tests … the list goes on. I am merely existing right now, I am not “living”… this sort of living is not normal and can have huge consequences on someone both mentally and physically. Not being able to work, makes me feel like I have no purpose in life. It is hard to make long-term plans, even plans for tomorrow or next week, because I have to live my life one day at a time. I could wake up one day feeling great, then the next day I could be feeling horrible.

Photo: Me & Zarah in Mooloolaba

I have spent 95% of the last 11-months either laying or sitting up in bed. I’ve managed a few outings here and there, but for the most part, my body is now used to laying and sitting and as a result, my strength and mobility is terribly low.

Photo: Bonding with my niece.

The point of this blog post, is to let you all know how important it is for someone who is chronically ill to have a holiday. Not only did it allow me to escape the confines of my own home, but it also allowed me to spend some much needed happy time making memories with my family. Generally, all the time I spend with my parents is either spent commuting to appointments or tests, or waiting around together at the doctors office, it is not quality time. Being able to bond again with my sisters, brother in-laws, niece and nephews was also highly important to me.

Photo: Bonding again with my niece Evie

The chance to also get some sunshine on my pasty white skin, and get my vitamin D levels up, was long awaited. I was also able to be a bit more active each day, I was actually given reason and purpose to get up each morning.

Unfortunately the daily chronic pain is still there, the cancer is still there, the surgical wound still hasn’t healed, and my body struggles to even sit and stand up properly these days because it’s spent so much time laying in bed. This holiday has been so good in so many ways, but as with all holidays, they must come to an end.

Photo: Dad turned 70 while we were away, so we made “70 things we love about him”.

As I sit here writing this in the airport as our flight is delayed, I already have post-holiday blues and don’t know where to now. As much as holidays are wonderful and filled with happiness and memories, there is still that sense of “what now?” with me, and I’m sure many others too.

Photo: Memories! The closest to Africa I’ll get – at Australia Zoo!

What now? Obviously we can’t be permanently on holidays all the time (wouldn’t that be nice!) but the chance to have some time-out from the constant tests and appointments is extremely important, as well as making memories, it’s something so many take for granted but for us, it’s our lifeline, it gives us that much needed push to keep on keeping on.

Photo: So glad we were able to create happy memories for Dad’s 70th!

Photo: Our last family lunch together in Noosa.

Photo: Having some downtime with Zarah.

 

Ashy Bines – Stop Making Cancer Claims!!

Ashy Bines, a qualified personal trainer, has now made two frightening claims (that I am aware of) with regards to cancer.

Firstly, she made un-educated claims that Bowel Cancer is not genetic and said that she is out to prove that it is not genetic. She may have a large following on social media, but it does not mean she knows what she is talking about in all facets of health and wellbeing. There are reputable websites and organisations such as The Cancer Council and Bowel Cancer Australia that say there are definite links to Bowel Cancer being hereditary. Considering Bowel Cancer is the second biggest cancer killer in Australia, it is incredibly dangerous for someone with such a large following to make such false claims.

This video and a well articulated response to her video by YouTuber “What Mia Did Next” can be found here:

https://www.youtube.com/watch?v=T9vwutoddh4

Secondly, she has now said that her diet plan has helped cure someone’s cancer. Yes, you heard right, a diet plan apparently curing cancer. I find it appropriate to remind everyone of the Belle Gibson saga and how extremely dangerous it is to even remotely suggest that diet cures cancer, especially when you are selling diet plans. Video can be found on my facebook page:

https://www.facebook.com/buttwhysherie/

Diet, in some instances, can help prevent certain cancers, but there is absolutely no scientific evidence based around diet being a cancer cure. None. Prevention and cure are two completely different words.

Ashy has a large following, many of whom are highly impressionable young woman, who may take this “cancer cure” claim onboard and go against doctor’s orders, again, much like the Belle Gibson story.

Ashy is not an oncologist, or a bowel surgeon, nor is she even a qualified nutritionist or dietician, so she should not be making any claims whatsoever that anything cures cancer, especially when she has a hidden agenda of trying to sell you something. It is also somewhat offensive to the scientists that are slaving away every single day trying so hard to find that cure that we are all hoping for.

It has almost been four years since my bowel cancer diagnosis and I am still alive today thanks to surgery and medicine, two treatment methods that are scientifically proven to work. Despite the fact I have been down the cancer path twice now, and have experienced first hand what the body has to endure, I would never openly mislead people nor lead them down a dangerous path of thinking they don’t need to be tested or that they can buy a diet plan and be cured. Unless you are a doctor, you should not be giving out mis-information regarding a huge killer such as cancer.

Ashy please stop, just focus on your fitness and leave cancer to the real professionals.