But you don’t look sick??

As my luck would have it, I posted a positive video update to my facebook page last Sunday afternoon feeling really pleased and excited that I was about to finish my four week dose of 24/7 IV antibiotics. My inflammatory markers had gone right down, meaning that after almost nine months of ongoing infection and a bout of sepsis, it was looking like we finally had this pesky infection under control.

Photo: me just a couple days ago! Would you see me in the street and think that girl has cancer?

With the infection being under control, my appetite has finally returned and I have regained a couple kilos, which is a good sign for me considering I lost at least 10kg’s post-surgery.

I still have daily pain and need to take regular pain relief, but considering the level of pain I had just a few short months ago, it has definitely improved and isn’t so debilitating. Touch wood. Lets not jinx myself with this now too!

Lately I’ve had people telling me how well I look, which is great, because I love not looking so deathly pale and fragile. However, I decided to write this blog post to help educate people that not everyone’s exterior is a reflection of their interior. Don’t get me wrong, I am glad I “look” well and healthy, but in this world of social media, you only see what I want you to see.

Invisible illness! That’s what they call it, when on the outside it looks like there is nothing wrong, but on the inside, it’s a whole different story. If I were to show you my CT scans, you would see the true mess that is going on inside.

Photo: me about a month ago. Yes there’s some visible weight loss if you knew me pre-cancer, but other than that, nothing really to worry about here hey? Think again 😦

There are many different types of invisible illness: depression, anxiety, PTSD, fybromyalgia, lupus, to name just a very few! Mine? Crohn’s Disease and Bowel Cancer. All that has happened to me (and continues to do so) is mostly all internal. Sure I have plenty of surgical scars, that are hidden underneath clothing and that I am not at all ashamed of, they are proof that I am far greater than whatever tried to kill me! And yes you can see the weight loss, the pale lifeless skin, the sad eyes and lack of energy, but that’s nothing a pretty outfit and make-up can’t fix, as well as a good old fashioned belly laugh! I was lucky enough to not lose my hair so I didn’t look like your “typical cancer patient”. You would have no idea what is going on inside this body of mine – and I don’t blame you, nor do I expect you to, because even I find it hard to grasp the fact that I can look seemingly well on the outside, but on the inside it’s a completely different story.

Photo: I was battling infection here!

It is somewhat soul destroying, to think that you are doing well because you are looking well, and sometimes even feeling well, to have really promising blood results, to feel as though you are finally improving, only to be told that no – nothing has improved, at all… well, not internally anyway. After 32 sessions of intensive hyperbaric oxygen therapy and four weeks attached to IV antibiotics 24 hours a day, 7 days a week, the internal cavity (aka my open wound) has not improved even slightly. It is still open, a big vacant space where the tumour used to be, and still at high risk of becoming infected and turning into sepsis again. Because it was exposed so early on to such serious infection, it just seems to be refusing to heal. There is also a lot of internal “thickening” or “thickened masses” that they don’t know whether it’s cancer or not.

It’s really just a “watch and wait” scenario now. I am continuing the IV antibiotics for another four weeks, and once the new hyperbaric chamber at the new hospital is up and running, I will complete my oxygen therapy. I am focussed on creating happy memories, doing what I can when I can, indulging in self pampering and just taking life one day at a time.

It is hard, really hard, knowing I don’t look sick on the outside, but also knowing on the inside my body is working against me. Every single photo in this blog post, is me with cancer, fighting infection, fighting pain, fighting fatigue. It’s an eye opener, but it’s reality. People are always fighting battles you may know nothing about, and battles that may not be visible, however I choose to be open about this, with hope that I will help educate and create a better understanding.

Photo: me just yesterday, enjoying an incredibly happy moment with my sister, niece & nephew for my niece’s birthday. Memories to cherish!

 

Another year on…

Facebook memories! It has its upsides and its downsides. Upsides being it reminds me of that happy sparkle I had in my eyes and that genuinely happy smile I had pre-cancer. Downsides being it also reminds me of how life has changed since my first diagnosis in 2013, and how unwell I’ve been and all the crap life has thrown at me over the last four or so years.

This time last year, I was genuinely feeling well. I was working in Sports Administration and we were in the throws of the 2016 Rio Olympic Games! I was busy, I didn’t have time to be sick. South Australia’s home grown talent Kyle Chalmers had just broken Australia’s 48-year drought in the men’s 100m freestyle to win GOLD! It was an exciting time for us, and I was busy hassling his coach to make sure Kyle would be available to attend our one big awards event of the year. Surely I would earn some brownie points getting Kyle to attend our event, and that I did, as well as Anna Meares! I was pretty chuffed with myself. In fact, out of the approximate 12 awards we had to hand out, I had managed to get 11 of the award winners to attend on the night, which was a first for many years. I was proud of myself.

Photo: Me with gold medallist and swimming superstar Kyle Chalmers at the event I organised. In this photo, despite knowing I had cancer again and was facing more major life-altering surgery, I still managed to smile, I was proud of myself for powering through!

So I was working 24-hours a week, being kept occupied with the Rio Olympics and taking charge of our major event for the year. I was looking at increasing my hours and trying to get back to full-time again. I was hitting the gym about four times a week to regain my strength and fitness. I was finally back on track after an 18-month hiatus to beat my first cancer diagnosis.

Working in elite sport is a very high paced environment and I had to schedule all my routine medical appointments and tests on Wednesdays, which was my only day off during the week. People were jealous that I “only” worked a 24-hour week, that I had every Wednesday off, but let me tell you, my “days off” were not fun ones… and I was also struggling to get by financially by only working 24-hours a week. If I could manage a normal 37.5 hour week, I would have done it. There was nothing “lucky” at all about my situation.

If Bowel Cancer is going to return, it generally does within the first two years. I had reached the two and a half year mark without recurrence and I had become complacent. I was still keeping up with all my tests and scans to monitor my condition, but the very real feeling of “scanxiety” had definitely subsided, finally!!

That was until a routine CT scan showed a “new mass”. It could’ve just been some scar tissue from the copious amounts of surgeries that I’ve had. I wasn’t worried. However when my surgeon’s office rang telling me that my surgeon wanted to see me, I knew it wasn’t going to be good news. He always told me over the phone that my CT scans were fine, so the fact he wanted to see me, I thought are you f**king kidding me!?!?! This isn’t happening!!

I took Mum to that appointment, and sure enough, he delivered the “recurrence” news and I lost it. I was in absolute disbelief. He wanted me to have a PET scan to confirm it. I went into work the very next day, put on a brave face, and didn’t tell a soul. I went about my business and did my job to the best of my ability.

On another “day off” I had a PET scan and because the “new mass” hadn’t been highlighted as anything to be concerned about, I was absolutely elated and cried happy tears. Thank goodness – a false alarm, talk about dodging a bullet.

However, when I went to see my surgeon again, proud of my PET scan results, he said he was still concerned. Far out. I had gone from being absolutely beside myself, to elated, to now worried again!! Again, I fronted up to work the next day, put my game face on and did my job.

On another “day off” I went into hospital and was put under an anaesthetic so that my surgeon could do a biopsy. A biopsy meant he could get some tissue of this “new mass” and test to see whether it was cancerous or not. I was worried but still hanging onto hope that because the PET scan didn’t highlight it as being a real issue, that maybe it would be OK, it would be benign or just scar tissue.

I went to my next appointment on my own because I was convinced it was all going to be fine. But in true Sherie fashion, and my history of being delivered the dreaded “cancer” word while I am on my own, it was confirmed that yes – it was definitely cancerous. Sometimes PET scans can come back as a “false negative” – and that’s what it did to me unfortunately.

As my surgeon told me the extent of the surgery that I needed to have – one of the biggest I’d had yet – I was in such disbelief. I was feeling fine, how can I have a new tumour?? I was too busy to be sick again! I haven’t told many people this, but as I left that appointment to cross the road to get to my car, I saw a bus coming and for a split second I thought about stepping out in front of it. But you know what the sickening thing was that stopped me?? I thought, knowing my luck, I will survive being hit by a bus and will only end up worse off than I already am. How bad is that?

Again, I fronted up to work the next day, I had so much work to do. Our awards evening was closing in, I had too much to organise and too many things to focus on, to the point where I delayed my surgery so that I could finish organising the event. How I managed to pull it all off, I don’t know, but I did, all while knowing I had cancer again and I was about to go under the knife for the billionth time!

November 29th, 2016 I underwent major 8-hour surgery. I spent one week in intensive care and one week in the surgical ward. I was told it would be a 6-8 week recovery, but secretly I was hoping I would recover earlier considering I was relatively fit and healthy going into this operation, which is a far cry from my previous operations where I’ve been incredibly frail and sick.

However, as we now all know, that initial 6-8 week recovery period is long gone! I am now in my 9th month of recovery, and often wonder if my surgeon was meant to say 6-8 MONTHS, instead of weeks?? Nope, he definitely meant weeks.

So what’s delaying my recovery? A few things. I was discharged from hospital with an infection in my surgical wound. I have been plagued with infection since that operation and most of it would’ve been preventable had I received proper care in the hospital to begin with, and had the then home nurse/s not left dressing inside of the surgical wound thus resulting in sepsis and a second operation over Easter.

My poor body has just been battered with surgeries and with infections. I am now finally on IV antibiotics which I can only HOPE will rid me of this infection once and for all. If the infection clears, the surgical wound will have a better chance to heal. The hyperbaric chamber oxygen therapy is also being used to help my wound to heal.

As there is always “something” when it comes to me – my hyperbaric chamber oxygen therapy will be stopping at the end of next week and I am forced into three weeks break, basically prolonging my recovery unfortunately. There’s nothing I can do about it, as it’s due to the move to the new hospital. There’s a new chamber at the new hospital and staff need to have their training and move equipment across. It’s not their fault, but it is definitely frustrating on my end. I am however trying to look at the positive in this three week break. I am starting to experience some “Barotrauma” symptoms, which include headaches that are lasting all day, everyday. Blood is present when I blow my nose, and my eye site is a lot more blurry than normal. Thankfully all this is reversible once treatment finishes. I am turning my thought process around and thinking this three week break will be what I need. The break will do my sinuses, eyes and head the world of good and help them recover, so that I don’t feel as shit anymore. Plus I will only have eight sessions left once I go on the break, but they will round that up and give me 12 sessions after the break which is a clean two weeks. So the hard yards are already done, I will be on the home stretch once I go back for more.

So much more has happened in the last year or so, but a lot of it isn’t really worth me rehashing and bringing to the surface again as I don’t feel it will do me any good. So until next time……. thank you for reading 🙂

Where are our specialised bowel cancer nurses??

When I was diagnosed with Stage 3 bowel cancer at 31-years of age, it didn’t take long for me to realise that there is very little support for bowel cancer patients. I wasn’t sure whether it was a funding issue at the particular hospital where I had my treatment, but there were no specialised bowel cancer nurses available to me both pre and post-cancer treatment.

My bowel cancer treatment included highly invasive surgery, intensive radiotherapy and chemotherapy. It almost felt like I was the only one going through this sort of cancer, because there was absolutely nothing available to me that I felt I needed. I needed access to a specialised bowel cancer nurse, I had just been diagnosed with the second biggest cancer killer, yet there were no bowel cancer nurses to help guide me through the changes that bowel surgery has on you both physically and mentally.

Yes, I had my oncologist and my surgeon, but their sole job is to organise the treatment and to perform the surgery. Once chemo and surgery and radiotherapy were finished, that was it, there was no advice or support following bowel surgery.

Bowel cancer patients experience many different changes to their body and their bowels post-surgery. Some have had to have their entire large intestine removed, some have woken up from surgery with a temporary or permanent ostomy, some have had sections of their small intestine and/or colon removed. It can be incredibly life-changing surgery for so many, yet access to specialised bowel care nurses is simply not there. There are stomal therapy nurses for those who require an ostomy, but if you do not need an ostomy, you do not get access to a stomal therapist.

The Federal Government has spent $52 million in the last 10 years on specialised breast cancer nurses and $12.1 million on specialised prostate cancer nurses. With bowel cancer still being Australia’s second biggest cancer killer, killing more people each year than prostate cancer or breast cancer, it absolutely astounds me that no similar services have been funded for bowel cancer patients.

In 2017, the estimated amount of new cases of bowel cancer is 16,682! Let that sink in a little… over 16,000 people may be diagnosed with bowel cancer this year, and there is still no funding nor any plan to introduce specialised bowel cancer nurses.

Again, I want to reiterate that this was my experience, and still is my experience. I am currently in the midst of a bowel cancer recurrence. My cancer has returned, three years after my initial diagnosis, and I am still at a loss as to where I can find a nurse who I can go to for advice. I am unsure whether things are different from state to state, or from hospital to hospital, but in a support group that I am part of (that I had to find myself, because again, I was given no advice on where to go to for support) it seems to be a very common issue amongst bowel cancer sufferers in Australia.

I also know of and have spoken to several breast cancer survivors who have had amazing breast care nurses guide them through all facets of their treatment. Even once their treatment had ended, they still had that ongoing support. So I cannot help but wonder, why is my cancer made to look and feel less important and less scary, because it doesn’t warrant that same level of support?

If I want to see a dietician, or a nutritionist, I would like to know who is the best in the field and who has the best knowledge and experience in treating bowel disease. If I am getting new and unfamiliar pain and symptoms, I would like to know if this is a normal process of healing, or should I go and see someone about it, and who? If I have difficulty adjusting to life after cancer, who can I see or talk to about it? If I am struggling with the mental aspect of having cancer, who would be the best person to go to, because again, I would like to know who is the most experienced in treating bowel disease. Specialised bowel cancer nurses could provide a “one stop shop” for people like myself, rather than us trying to source information from various different channels.

All the information and all the knowledge that I have gained throughout my entire ordeal, has been through self-research, speaking with fellow bowel cancer patients, and being pro-active with my own health. I know that there is always going to be some element of having to be pro-active, however I strongly believe that it is about time things changed, we deserve a whole lot more support than what we are currently receiving.

Hyperbaric Chamber Oxygen Therapy

Hyperbaric Chamber Oxygen Therapy – or so my friend Mia and I so aptly call it, the Chamber of Secrets, haha. What goes on in this Chamber of Secrets you ask? Nobody knows! Well, I certainly didn’t, until I started my therapy one week ago today.

I have been asked LOADS of questions about the therapy, but because I am still so new to it, and when I learnt about it to decide whether or not I’d go ahead with it, it was information overload. Plus it can be quite technical stuff!

The following information has been taken directly from the pamphlet provided to me by the Royal Adelaide Hospital (RAH). The following information written in italics is courtesy of the Hyperbaric Medicine Unit.

This unit is a centre of excellence and serves not only as a treatment centre for South Australia, but as the control centre for the National Divers’ Emergency Centre. It collaborates with the Intensive Care Unit as part of the Department of Anaesthesia.

A hyperbaric chamber is built to withstand increased internal pressure. There are two chambers at the RAH. The Drager multiplace is approximately three metres long and two metres in diameter, divided into a smaller outer chamber and a large inner chamber. Two patients can lie in the inner chamber at one time or up to four can sit comfortably. (When I first visited the unit, this was the chamber I saw first and it scared the shit out of me! It looked like it should be a deep dark submarine, I wasn’t sure how I’d cope in there, thankfully I was quickly assured I would not be in that one – phew!).

The walk-in multiplace is a large rectangular chamber of about five metres long, three metres wide and two metres high. Access to this chamber is through a door large enough to walk through or wheel a special hyperbaric trolley. (This is the chamber where I have my treatment).

Hyperbaric Oxygen Therapy is the administration of 100% oxygen in an environment of increased atmospheric pressure. Its purpose is to provide increased amounts of oxygen to the body. It is effective for a number of different medical and surgical conditions, either as a primary treatment (for example, for decompression illness) or as an additional therapy with other treatments, such as antibiotics or surgery.

The air we breathe normally consists of approximately 20% oxygen and 80% nitrogen. During therapy, the pressure is increased two to three times more than normal and you will breathe 100% oxygen. The combination of high concentration of oxygen and increased pressure causes large amounts of oxygen to be dissolved in your blood and other tissues. There can be as much as 10 to 15 times the usual amount of oxygen dissolved in your blood, which then delivers more oxygen to the rest of your body.

Once you are in the chamber and the door is closed, you will hear the noise of air flow as the chamber operator starts a gradual increase in pressure. This is called compression.

Air temperature will increase as the chamber is compressed, but this will settle down once you reach the treatment “depth”.

A nurse who is educated in hyperbaric medicine will remain with you in the chamber throughout the treatment.

Before I had commenced my therapy, I knew very little about it. I knew the chambers were used in emergency situations when divers had come up to sea level too quickly, but otherwise I had no clue.

A number of different problems have been shown to benefit from the therapy, or are under investigation. Some of the most common are decompression illness (also known as the bends), carbon monoxide poisoning, non-healing infected wound (especially in diabetes), osteomyelitis (bone infection), radiation injury to a bone or soft tissue and gas embolisms.

In my case, I am trying the therapy with hope that it will heal a wound that hasn’t healed since surgery in November 2016. My surgeon said my recovery from that operation would be 6-8 WEEKS … I am now 7 and a half MONTHS post-surgery and still haven’t healed. My wound has been exposed to sepsis and ongoing infection, the tissue is so damaged and my whole situation has become so complicated that my own surgeon is out of ideas. I also saw one of Adelaide’s top plastic surgeon’s and he too isn’t really sure what to do about me.

I have also seen one of Adelaide’s top infectious disease specialists in the hope that we can get this ongoing infection under control.

So I am basically hoping like I’ve never hoped before, that this therapy works… I am all out of options.

I am currently six sessions down, with another 34 sessions left to go. It is a huge investment in time, but it is something I am willing to try, even though there is no guarantee at the end of this that it’ll work.

My new routine now consists of getting to the RAH by 10.15am every single day from Monday to Friday, then Saturdays I have to be there by 8.15am. I change into the clothing that they provide, as we have to be wearing 100% cotton in the chamber.

Because of the use of a higher concentration of oxygen inside the chamber, fire safety precautions are essential. You will need to wear 100% cotton clothing. Shoes cannot be worn in the chamber and watches, hearing aids and prosthetic devices also have to be left outside. Please do not wear make-up or any petroleum-based cream. Hair and cosmetics that are oil based are also not allowed.

By 10.30am I enter the chamber with a book and some magazines, as well as several other patients and a nurse. The first five or so minutes while we go into compression stage, are the hardest for me as far as my ears go. It is nothing major, but I have to keep swallowing to help unblock my ears. This is completely normal, the other patients in the chamber with me, as well as the nurse, spend those five minutes unblocking our ears.

Once we have reached treatment depth, which is equivalent to being 10 metres below sea level, the patients are fitted with special dome type helmets that are see through and quite firm around the neck. The nurse does not wear one of these. This allows the patients to get even more oxygen.

Halfway through the treatment we get a short five minute break, our domes are removed and we can have a drink and some biscuits and then they’re put back on. I fill my time reading the many magazines that my friends have dropped off to me, as well as reading books. I am comfortable on a recliner and I am in there for two hours at a time. I don’t find that the time goes slow (probably because it’s still early days for me) nor am I ever uncomfortable in there.

There is a nurse in the chamber at all times, who has direct communication with the specialised doctors, nurses and technicians on the outside. There are also video cameras so that the doctor and technician in charge can see what is happening in the chamber at all times.

Once the two hours is up, we simply leave the chamber, get changed back into our own clothes and leave.

Last week as our treatment was starting to finish up and we were slowing being brought back up to normal atmospheric pressure, I could hear the faint sound of the hospital’s evacuation alarms. I asked the nurse inside, what would happen if we were mid-treatment and the evacuation alarms went off, because we can’t just rip our helmets off and hurry out the chamber, we would need to be slowly brought back to normal pressure. The nurse told me that we are actually safer in the chamber, than out. We would only ever evacuate if the firemen came in and told us it was time we needed to be out.

I also learnt last week that there must be a doctor in there overseeing the treatment at all times. On Friday, the doctor had called in sick, so my treatment was cancelled. There must always specialised nurses and technicians on hand. Never ever do they cut any corners, and they always do safety checks before each session.

At only six sessions in, I cannot tell you if I am noticing an improvement. This is a lengthy process but something I will be sure to keep you all updated on as the weeks progress – wish me luck!

 

Spirits lifted! The power of Social Media.

Social media, it has evolved so much over the years. It certainly has its negatives, with cyber bullying becoming more and more of an issue, so much hatred being spread, and people actually becoming less social, they are so glued to their phones and their social media accounts that they forget to be present and appreciate what and who is around them.

However, it can also have its positives, and I have been lucky enough to experience more of the positives to social media than the negatives. For one, I have found online cancer support groups on facebook, where I can speak to people going through the exact same thing as me and new friendships are formed.

It has also made it easier for me to see what my friends overseas and interstate are up to. Even my friends living here in Adelaide with me, it makes it easier to communicate and tune into their lives if I physically cannot see them. Whether it’s the distance preventing me from seeing a friend, or the cancer making me so sick I cannot get out of bed, social media still allows me to see their photos and see what is happening in their lives whilst my own life feels like it has stopped.

But the most amazing thing happened to me yesterday, thanks to social media! I had a very special visit from a social media entertainer, Jackson O’Doherty. Jackson has over four million (yes, million, that’s not a typo!!) followers on Facebook where he primarily posts funny videos and pranks on his friends. He has almost 300,000 followers on Instagram and goodness knows how many on his Snapchat! He’s quite the lunatic (no offence Jackson, if you’re reading this!) but a good lunatic, he is absolutely hilarious, I share his very crass and very strange sense of humour.

I have been following Jackson online for quite some time now, but I started to notice over the last seven months or so, how much of a big impact he’s made on me. As most would be aware, my cancer returned last year and I had major surgery in November 2016. Since then, I have been dealt blow after blow after blow. Everything that could possibly go wrong, did go wrong.

The pain and suffering and sheer frustration and despair has been constant, for such a long time, so I am not going to lie when I say I had hit an all time low. I was beyond done with life when sepsis hit and nearly killed me over Easter and I had to endure more surgery. When it started to look as though I was finally healing, infection hits again, and I am told by my surgeon that he just doesn’t know what to do with me anymore.

I was at my lowest point, ever. Losing hope and running out of options.

Then Friday night, I am in bed, doing my usual Snapchat stalk and I see Jackson had posted a snapchat at Adelaide airport. I bolted upright in bed and thought to myself ohhh my goodness I HAVE to meet him!!!!!! However when someone with such a large following as Jackson’s, it can be very hard to randomly get in touch, especially when he must receive thousands of random messages per day and comments and likes on his social media platforms.

But you know what? I thought what have I got to lose by trying to reach out, trying to message him? Nothing, absolutely nothing to lose by sending a message. So that’s what I did, I sent him a message with the expectation that I wouldn’t hear back from him. I didn’t expect him to see my message, let alone reply to it, but he did, he actually did! That alone was enough to perk me up.

I briefly told him about my cancer battle and that his funny videos have been brightening my days during such a shitty time in my life. He has the ability to make me smile and laugh by simply being himself, and I needed him to know that. I needed him to know that my days feel less depressing, because I get to see and laugh at his hilarious antics all over snapchat and facebook videos.

There was one particular funny video that he uploaded recently. The night he uploaded it, was the exact same night I was having a particularly hard time with my emotional state. I was well overdue for a meltdown. I had so much pent up anger and frustration over this entire shitty situation of mine, that I let myself have a big cry. I won’t sugarcoat it, it was that ugly sort of cry you do into your pillow and you start to lose your breath. I then open up facebook, still sobbing like a little baby, and see this video Jackson just uploaded and it instantly brought a smile to my face, it stopped the tears and I watched it over and over again. My meltdown had finished.

Here’s the link to that video if you’re interested: https://youtu.be/9HdT0__8NGI

I love the song (such a catchy tune!), loved his dance moves and loved the all-round cleverness of it.

So I asked him if he had any spare time whilst in Adelaide and if I could meet him. This is where I thought I was maybe pushing my luck. He was only here for two nights and was busy shooting content for the brand Ryderwear. I would have absolutely understood if he didn’t have the time, it wouldn’t have made me think any less of him.

But incredibly, he did have the time, well, he MADE the time… for me… little old me, and it was honestly the best afternoon I have had in sooooooo long. We chatted, we laughed, we took photos, we snapchatted, AND he even gave me his iconic pink sweater, the same one he wore in that video.

Later that night, he posted a photo of the two of us to his instagram with some beautiful words. The amount of amazing comments that the post received, were truly heartwarming, and I read every single one. I not only loved the fact that total strangers were sending me love and support and giving me a renewed strength, but I also loved that they could recognise what a good man he is, and the respect he received is truly deserved.

Prior to his visit, I honestly couldn’t tell you the last time I felt such excitement and happiness. His visit was such a selfless act and really lifted my spirits, at a time when I needed it the most. I have so much respect for him, he has such a beautiful heart and I will be on a high over this for a long time.

Social media for the WIN!!

PS: This post gets the first coloured photos for my page, because you need to see the amazing-ness that is the pink sweater!!

 

We have a plan – but there’s a catch!

So I know I may have generated a bit of excitement when I announced on facebook that we FINALLY have a plan to help aid in my recovery, however I really should tell you that it is a very full-on and intense plan. A plan that I don’t quite know how I will handle. I am not excited for it, I am not happy about it, but if I want to regain any sort of quality of life, I have to do it.

Lets fast forward back to mid to late last year. I went on an amazing vacation to Bali with my best friend, I was well and I was happy. I was working part-time and I was about to increase my hours because I still hadn’t been able to work full-time since my first diagnosis, however I was definitely feeling ready to work more.

I was working four 6-hour shifts a week, and on my days off I would spend some time in the gym rebuilding my strength and fitness. It was wonderful, it actually felt like I was finally getting back on my feet again after the first diagnosis knocked me for six for 18-months prior.

Generally, if bowel cancer is going to return, it usually does within the first two years. However, we are closely monitored for five years just in case. This means colonoscopies once a year, and CT scans every six months. So for the first two years, each scan that I had, sent me into a huge state of scanxiety!

As I had made it to the two and a half year mark since my first diagnosis with no spread or recurrence, I had become quite complacent. I continued with my regular scans, however the stress and anxiety had finally eased. It had definitely gotten easier for me, but it was then at that point, that life decided to throw me another curveball.

The CT scan showed a new mass, but this time it wasn’t in my bowel, it was in the pelvic and tailbone region. I was beyond devastated. I then had a PET scan, which ended up showing no active tumours, so my devastation turned into elation. It was such a whirlwind of emotions, but it was still so unsettling that two different scans produced two different results.

My surgeon was still concerned and organised a needle biopsy whilst under anaesthetic. The tissue from this new mass was sent off for testing and it was confirmed cancer. I had major 8-hour surgery on 29 November 2016 and was told to expect a 6 to 8 week recovery.

Now, almost seven months later, I am no where near recovered from that operation. In hindsight, I never would have gone through with the surgery had I known what it would do to me afterwards, but unfortunately there is no way of knowing how the body is going to react after such invasive surgery.

It is a stark contrast from where I was at pre-surgery, to where I am at post-surgery. I am 95% bed-bound, often only leaving the house to attend doctor’s appointments. If I am very lucky, I will be able to venture out for a short walk, or a picnic with close friends, all on very rare occasions. Whilst your life continues as normal, mine has completely stopped. My quality of life is unfortunately very poor right now, and I am so very tired of it, hence my complete and utter despair for some action. How anyone can expect someone to live this way, is beyond me.

So the plan… the extremely daunting plan is to start on some heavy duty antibiotics. As most of you may be aware, I was hospitalised over the Easter long weekend because I was dying of sepsis. I had to endure another operation, as well as have IV antibiotics and then two weeks of oral antibiotics. I thought I had finally kicked the infection to the curb, until just a few weeks ago when it started creeping back.

If you’re thinking I will just need another two week dose of oral antibiotics, you’re very very wrong. The doctors are looking at giving me IV antibiotics for 24 hours a day, 7 days a week, for anywhere between FOUR to EIGHT WEEKS! I guess the positive is that it can be done at home, I won’t need to be in hospital that whole time. However I will have to carry it around with me, as it will be in a bottle attached to a needle that gets inserted into my port. The same port that was used to administer chemo… I knew I didn’t get it removed for a reason, because it will certainly come in handy now!

A nurse will come to my home every single day to change the bottle. However it doesn’t stop there, once the IV course has finished, I would then be looking at taking oral antibiotics for 12-months… yes, TWELVE MONTHS. How my poor gut is going to handle that, I do not know. I honestly don’t even want to think about it right now.

If being attached to IV antibiotics 24/7 for four to eight weeks and then 12-months of oral antibiotics isn’t enough to send me into a rage, lets throw in the plan of hyperbaric chamber oxygen therapy! This is something I only know very little about, but I will learn more in the coming weeks. By going into a hyperbaric chamber, your body is given 100% oxygen, and oxygen helps with wound healing. Ongoing infection from sepsis, and radiation damage has resulted in poor wound healing post-surgery, so the idea is to get me into a hyperbaric chamber and help this tissue repair itself. But there is a catch…

There is only one hospital in South Australia that has hyperbaric chambers and they’re at the Royal Adelaide Hospital (RAH). For the oxygen therapy to work to its full potential, it takes a considerable amount of time. I could very well be looking at 200 hours of oxygen therapy, at two hours per session. So if you do your math, and base it on a five day week, I could be commuting back and forth to the RAH every single day, for FIVE MONTHS.

And it STILL doesn’t stop there. I have also been referred to a plastic surgeon to see if there is any way that he can help repair the damaged tissue. I see him next week so will have more of an idea what’s involved, but yep you guessed it, it will mean more surgery,

See… I wasn’t lying when I said it was full-on and intense. I had honestly reached the end of my coping ability well before Easter when shit hit the fan with sepsis, so I don’t really know how this will all pan out for me, but I am desperate and it is worth a try. I think I just have to write off yet another year as being an absolute shit show and hope that the following year can only get better.

So what should you say to a loved one with cancer?

When I wrote my “please stop telling me to keep fighting” piece, I didn’t believe that it would be worthy enough to be republished by a news outlet, nor did I believe that it would resonate with so many people. It was such a raw and honest piece that generated quite a lot of discussion.

I have been inundated with comments, emails and private messages, all from people who have opened up about their own personal story, and how thankful they are that I spoke up.

I have also received gratitude from people who do not have cancer, but who have a loved one currently going through it, and my piece opened their eyes to the world of what their loved one is going through.

I have also been told, for the first time in a long time, how well I write, and how well I was able to articulate my message. In a previous job of mine, I had a boss who constantly criticised every single thing that I wrote. I had to write meeting minutes, agendas, letters and also write social media content. Every single piece of writing that I completed, it was picked at, and constantly knocked back by my boss, with no feedback or advice given. I am not a journalist by any means, and I have had no formal training in writing, but this role only required very basic writing skills. The criticism continued every single day, for five years, and I soon began to believe it. I started to agree that I was a terrible writer and I eventually lost faith in my ability.

Since I’ve been so unwell, and so incredibly bored, I decided to start writing again, and it has somewhat become therapeutic for me. Questions arose from my last post, asking me “What DO I say then? If people don’t want to hear keep fighting??”.

The answer is really quite simple. You can say “I’m sorry, I don’t know what to say”, because half the time, we don’t know what to say either. Or think back to BEFORE your loved one was diagnosed, what did you talk to them about then? Did you discuss how your days at work were? Did you fill each other in on what you did over the weekend? Did you like talking about what is current in the news? What movies you’ve seen or what TV shows you’ve been watching?

These are normal everyday conversations, this is what you should be saying. We don’t want sympathy, or to see your sad eyes, we want as much normality as possible. We want normal conversation, because after all, we are still that same person you know and love.

In my situation, I did also notice that friends would put their words more into actions. I was incredibly blessed to experience many thoughtful gestures so I compiled a list of things that I know helped ME (obviously keep in mind that what may appeal to one, may not appeal to another. Just draw on your knowledge of your loved one and the ideas will come to you).

• Magazines. The trashy gossip type ones that were quick an easy to read. A friend organised  a subscription so that I had a new magazine to look forward to each week.
• Adult colouring in books (not adult as in R-rated adult haha) – the really nice ones that seem to be everywhere at the moment. They’re specifically designed for adults and not for kids. Also some coloured pencils. I found that colouring in was the only sort of meditation that actually worked for me and genuinely kept my mind off things.
• Text messages or facebook messages. I personally didn’t like phone calls, or any surprise visits at the hospital. I don’t quite understand why people would rock up to a hospital for an unannounced and unplanned visit, but please don’t do it. There’s a constant flow of doctors, surgeons, nurses, physio etc that are in and out of the room at all times, that alone can be exhausting. By sending a text, I could reply at a more convenient time, either after a nap or once my pain was under control.
• When I went through radiotherapy, I was given products like sorbolene cream to help ease my radiation burns. Sugar free lollies because my mouth tasted like metal. Peppermint tea for nausea, Biotene for dry mouth, a heated blanket and cotton socks because I had chemo during winter. I also loved nice toiletries for my hospital stays, think body butter from the Body Shop.
• Home baked treats were always a hit with me, especially because I always lose a lot of weight post-surgery and during treatment.

• If you’re in the position to do so, let them log into your Foxtel Go/Netflix/Stan account, because daytime TV sucks!
• If you have children, get them to draw/paint/scribble a picture to give to your loved one. No gesture is ever too small. Or go one step further and record a cute video message from them on your phone and send it. A friend of mine did this for me recently and it gave me a renewed strength.

We already know that this is hard on you too, but the best thing that you can do is to continue being you. Don’t overthink your words, don’t get awkward, just continue being a friend, the best way you know how.

Amelia

Three years ago, shortly after my first bowel cancer diagnosis, I met Amelia in an online support group. She too had just been diagnosed with Bowel Cancer and we were the same age. We instantly clicked. We shared our stories and our experiences. She was the biggest support to me because she genuinely knew everything that I was going through, because she was going through the exact same thing at the exact same time. We were both always in and out of hospital, at the same time, texting one another from our hospital beds. When we both couldn’t sleep, we’d keep each other company with texts that’d go right into the early hours of the morning. We went through chemo together & we had surgeries at the same time. But we didn’t just talk about cancer, we talked about guys, our friends and family, where we wanted to travel to, and we even planned a girls trip when we both had recovered. Amelia lived in Sydney and I in Adelaide. She was going to come here and I was going to go there, we had some great plans ahead of us.

In the year that we were chatting, I told her many things that I hadn’t told anyone else, purely because I knew she could completely relate. And she told me things she hadn’t told others either. I will never forget receiving some of her home made short bread biscuits in the mail because we had both lost sooooo much weight and this was her effort to help bulk me up. Even in her darkest days, she would still think of others.

Sadly, on 19 May 2015, Amelia passed and it broke my heart. Even though we had never met in person, our constant texts and Facebook messages over the course of the year made me feel like we’d known each other a lifetime. You don’t go through the exact same cancer as someone at the exact same time & share the things that we did & not form an incredibly special bond.

Still not feeling 100% myself, I flew to Sydney on my own to attend her funeral, where, despite never meeting me (and not even being sure if Amelia had ever spoken of me) her family and friends welcomed me with open arms. I have since been to Sydney several more times to see everyone, and their willingness to have me in their lives is nothing short of amazing! I even had my ‘hope’ tattoo done in Bondi on Amelia’s birthday with her beautiful friend Courtney holding my hand. Amelia’s Mum was one of the very first people to see it.

It has been incredibly hard without her, especially this second time around. I have experienced the very real feeling of “survivors guilt” and I live with that every single day. But I do have comfort knowing that I have one very amazing guardian angel forever watching over me. I also have Amelia’s Mum and her friends in my life now and I feel forever grateful for them. Their love, support and generosity has been nothing short of amazing!

The story behind my “hope” tattoo

I never thought I would ever get a tattoo. Not because I don’t like them, but because I was afraid of the needle, and because there was nothing meaningful enough for me to warrant branding myself for life. I like tattoos on other people, but not on me.

My fear was more so the fear of the pain with the needle, and I know how crazy that sounds because I have had hundreds – probably thousands – of needles in my lifetime from blood tests, injections and IV’s. Not to mention the pain associated with major surgeries, and umm that thing we call cancer, doesn’t exactly tickle! I’m just no good with self inflicted pain.

Part of the process for radiotherapy involves getting a tiny dot tattooed onto your body so that they know where to aim the radiation. I had two dots tattooed onto me, and although you cannot actually see them with the naked eye, I still know that they’re there, and I don’t like it.

I didn’t want these two dots to be the only tattoos on my body. I wanted to take some control back and actually be allowed to make some of my own decisions. Part of having cancer is you basically hand over your life and your body to the medical professionals and it somewhat feels like it isn’t your body anymore.

All throughout my first diagnosis, I got by because I simply had HOPE. I had hoped that things would soon get better. I hoped that tomorrow I would wake feeling better than I did today. I hoped that my next CT scan would be better than the last. I hoped that I would recover well from surgery. I hoped that I would be able to live a relatively normal life after treatment. I hoped that life wouldn’t always be this shitty and unfair. Hope was all I had to focus on, and to hold onto, so I thought it would be perfect to divert my mind away from the radiotherapy tattoos.

It was also to act as a constant reminder to hold onto that hope, that attitude that things would in fact be OK (eventually). I see those words on my arm, every single day. I don’t know about you, but if something is pounded into my head on a daily basis, I will believe it.

To add to its meaningful message, I decided to add more meaning to it by having it done on Amelia’s birthday. Amelia was an amazing support to me, who I will speak about in her own seperate post. I had this tattoo done in Sydney (where she lived) with one of her closest friends by my side holding my hand. I now had that very meaningful tattoo I knew I wanted.

 

Please stop telling me to “keep fighting”

I know you mean well, but please stop.

To put things into a bit of perspective, and in my defence, I have been (fighting), I haven’t stopped, for three and a half years.

Since my first diagnosis in 2013, I have had no choice but to fight. It’s something you just do, without even thinking about it, without being told, you just do it, because you have no choice. Sure, I have moments where I think I can’t do this any longer and don’t want to do this any longer, but I still fight.

Even when I have looked well, when it looks on the surface like I am not struggling, let me tell you, there’s still a fight going on. Cancer leaves people with long-term and often permanent side effects, which I choose to deal with and fight on my own and in private. Just because I may look OK to you, it doesn’t mean the fight has stopped.

The fight has been daily, and constant, for over three long years, and will be for the rest of my life. I am allowed to be over it. I am allowed to have moments where I can admit that I simply cannot do this anymore.

I have done everything humanly possibly to beat this. I have done everything the doctors and surgeons told me to do.

I endured five weeks of daily chemo radiotherapy to stop the cancer from coming back, but it still came back.

I suffered through six months of weekly chemo infusions to stop the cancer from coming back, but it still came back.

I have now had SIX major operations in the space of three and a half years to remove tumours, to remove affected lymph nodes, to prevent further spread, but it still came back.

I have had CT scans every six months and colonoscopies every year, to catch anything before it got worse, but it still got worse.

I am having trouble with healing post-surgery, because of tissue that was damaged during radiotherapy. Yep, something that was supposed to help me, is causing issues.

I am having ongoing infections due to sepsis, because someone stuffed up and left two dressings inside of me. Yep, someone that was supposed to help me, has caused issues.

Telling me to “keep fighting” makes it sound like I have stopped, but I haven’t. I am doing the best I can in a shitty situation. I know it’s hard to know the right thing to say, so what should you say to someone with cancer?

Often a simple “I’m sorry, I don’t know what to say” is enough. We don’t need (or want) to hear that “everything will be OK” because you don’t really know that, do you? Continue to talk how you would normally talk, before cancer entered our lives, because I am still that same person you know and love. I crave non-cancer related conversation, and I still want to hear about your day, I still want to talk about normal everyday things.

Try and put your words more into actions. Offer home cooked meals or freshly baked goods, drop old magazines or books on my doorstep, or offer to come to an appointment with me. Your shoulder to cry on, your listening ears, your mere presence is enough. Let me be angry with the world, agree with me when I say that life is cruel and unfair.

The best thing that you can do, is to simply be present. Whether it’s phone calls, text messages or visits, knowing that you are still by my side is the best thing I could ever hope for.