Shrinking the Silence

Sharing a voice on living with rare disease

The toll of hiding my invisible illness — January 8, 2021

The toll of hiding my invisible illness

It’s absurd to think it took a global pandemic for me to realise I was hiding my invisible illness in so many aspects of my life.

Almost exactly a year ago I went in overnight for a sleep study (yep so before covid times). I had been exhausted to the point of not being able to keep my eyes open during the day for months on end. Nothing was showing up in my blood tests so I was hoping it was something to do with my sleep – it wasn’t. There was nothing abnormal about my sleep.

Flash forward to March 2020 when we went into lockdown. All of a sudden I was working from home everyday and doing next to no socialising. Guess what disappeared? My extreme fatigue. More so, I had the most energy I have had since before my major colorectal surgery in 2015.

My self diagnosis? Chronic fatigue from being chronically ill and functioning in a world not equipped for me.

When I think back I’ve been multi tasking, masking and juggling my life since 2014 when I got my diagnosis and suddenly needed to see a dozen specialists. I sacrificed lunch breaks to go to appointments and rushed back to not be seen by colleagues as taking time off work – who knows how much I spent on Ubers getting me to and from work and appointments over the years.

I made early morning appointments that I could go to before work – I am not a morning person so this wasn’t ideal and affected me for the rest of the day, but it was a way to keep my medical stuff seperate from my work and make the best impression.

I still have just as many appointments but it feels much more accessible for me to take time during the day now that everyone else is being flexible and going through the challenges that covid has thrown everyone. It’s funny though that the space made to accomodate people like me only comes when the general population are facing it as well.

I really hope this openness and vulnerability continues once the pandemic is over, because it has made a huge difference to my life as a chronically ill person.

For now, I’m promising myself that:

⁃ I will make medical appointments at times that work well for me

⁃ I will rest when my body needs it

⁃ I will be kinder to myself for needing to take time off work for my health and quite literally to keep me alive and well

I struggle with my mental health and that’s ok — November 27, 2020

I struggle with my mental health and that’s ok

I’ve been meaning to write about my experience with mental health for a while but it is a really hard one to tackle. I hit a bit of a milestone last week though, which has got me reflecting of my progress over the last 5 years. 

I had a session with my psychologist last week and we realised that I have been doing pretty well for a while now, so I left without making another appointment, knowing that I can come back if and when I need to. It’s a great feeling but also one that comes with a bit of fear because therapy has been like a security blanket for me and also got me through some pretty tough times – my diagnosis of FAP, recovery from major surgery, breakups, toxic work culture of an old job (not my current job!). But the good news is that I have learnt some very helpful strategies to cope if I need them again down the track and I do continue to be on medication which keeps my symptoms of obsessive thoughts out of sight! 

It took me a while to seek help, and the reality is the trigger was my diagnosis of FAP but I was struggling with my mental health prior to this but was just doing pretty well and masking it and going on with life because it wasn’t something that was really spoken about. Anyway, back to the timeline… so when I got diagnosed I saw my GP who gave me a referral to psychologist and was very diligent in following up on any other support I may need. I appreciated the thought but was there thinking… I’m fine? I’m 25 and I just need to push on and focus on the surgery ahead of me, aint nobody got time to talk about my feelings!

As surgery loomed closer and pretty difficult conversations  started being discussed I realised that I wasn’t coping so I made my first appointment and here I am 5 years later not looking back. I was very much a closed book for the first year or so, thankful that they persevered and got me to open up because I don’t know what state I would be in now if I hadn’t gotten on top of what I was feeling. In the year after my diagnosis and leading up to surgery I was a mess of dark thoughts because I was in a limbo where I needed to put my 100% trust into specialists I had just met – a common thought was what if they’ve got the staging wrong and cancer is already growing in me, am I going to die young? I needn’t have worried because my surgeon is a champ and very skilled so I am A OK! 

So I did open up a little through these sessions – but I still remember the realising how much I was still holding in when I was finally allowed home after my surgery. I had been cared for around the clock at hospital and when I came home it was such a relief but also terrifying because I was faced with a long recovery ahead of me and the knowledge that monitoring and regular surgeries/procedures would be part of my life forever. I broke down, uncontrollable tears! For those who have met me you would know that I rarely cry so this was very unusual but quite cathartic. 

As I got through my recovery from surgery, my psychologist encouraged me to think about how I could find an outlet for what I was going through, and soon after I started this blog, Shrinking the silence, which has helped me so much. I’ve always been better at writing down how I’m feeling or going through, so it was the perfect spot. I had been journalling before but there was something about putting it on a public page that made it more real and it also had the other purpose of potentially reaching others who were going through a similar diagnosis and struggling to find helpful information and personal experiences (trust me… when you have rare disease or cancer the internet can be terrifying and quite negative). 

So at this stage, life was pretty dandy – I was back to somewhat normal life, back at work and working out how to stop living in my illness. Then came along my good friend, desmoid the aggressive tumour. Out of nowhere I now saw an oncologist and had to start chemo. Cancer is scary, terrifying, but everyone who works in the field of oncology are amazing people. My oncologist was very intuitive and could sense that I was coping by not focussing on what was happening to me and just pushing on (very true). He would ask me each appointment for 3 months or so how I was coping and I would answer back, yep I’m fine, doing well… lots of support around me, talking to a psychologist about it etc etc. 

He left the choice to me which I appreciated, but let me know that I might benefit from seeing a psychiatrist and exploring if medication could help me in this really tough period. What I hadn’t mentioned to him or anyone was that I was having some pretty terrifying thoughts on a regular basis that were really upsetting me. A month or so later I asked him for a referral and I’m so glad I did. I’ve been on medication for a few years now which help with my obsessive thoughts and enable me to go about life with limited set backs. 

If you’d asked me 6 years ago before any of this medical stuff happened to me if I would consider seeing a psychologist or psychiatrist, let alone be on medication for it, I would have laughed at the idea. That in itself is a scary thought because I desperately needed help but didn’t want to believe it myself. 

Aside from the obvious of controlling my symptoms – therapy has opened up a whole new world for me of valuing myself, my boundaries and my relationships and I couldn’t speak more highly of seeking help for your mental health.

I would make an excellent undercover cop — September 22, 2020

I would make an excellent undercover cop

I’ll start by saying that I have no ambitions to join the police force, if anything this analogy is a sign of my love for crime shows!

As I’m sitting here in the cancer clinic for my three-weekly treatment, I’m also working from my laptop and to the best of my colleagues knowledge I’m “working from home” Being chronically ill like I am, I have gotten pretty good at my undercover life as a fully functioning member of society and I am aware of my privilege to be in a position to do this. Those who aren’t are in no way any less part of society.

But there are moments where I stop and think – what on earth is going on here.

This morning is one of those where I reflect on what has become normal for me, is probably unfathomable to your otherwise healthy 30 year old. I say this not for sympathy because in all honesty I have come to terms with my life and adapted my expectations so I am now incredibly happy with what I am ABLE to do (with a few mid week sneaky hospital admissions here and there)

I do chuckle to myself thinking of acquaintances reactions if I told the whole truth: oh yeah I was in hospital overnight for surgery and back in the office today… my plans for Friday night? Oh my oncologist is admitting me to hospital for IV fluids.

Jokes aside, the secret life never ends even when physical symptoms or ailments aren’t in my life. There’s always the mental symptoms when I’m going on with my life like – is my tumour growing? It’s stable now but what does this look like in a few years? I know that many people I’ve come in touch with through social media can relate to this feeling. You can be medically released from treatment but once you’ve had a diagnosis of anything, it’s with you for life in some form or another.

I’m so appreciative of my treatment team who have adapted their ways of talking to me and treating me with my age in mind. Not easy when your main specialists are colorectal and oncology …. I’m not the usual demographic that’s for sure. It’s had a huge role in me being able to achieve and experience things a twenty something year old, and now 30 year old, should.

Chronic illness in times of covid — August 9, 2020

Chronic illness in times of covid

It’s been a while between blog posts! I read my last one again which was from March (a whole lifetime ago). I was writing about deciding whether to go on holiday, when I thought I still had a chance of going to the UK. Quite funny now given how things escalated pretty soon after that post.

It’s got me thinking though that it has been an interesting experience being someone who still needs to have regular oncology treatment and my regular FAP monitoring scopes when really I’d rather avoid these areas… mainly for the safety of more vulnerable patients.

March – June was a very stressful period because I had three procedures I needed to get done… and all of them were pushed back a few times because of covid. I finally got to my gastroscopy scope date in May, and low and behold, I presented with a random fever so I couldn’t have it done that day and instead had a covid swab. I got the swab done to be sure but also because I was due for my next iv infusion at the cancer centre in a few days and the thought of going there with covid was terrifying.

This then sent me into a huge stress because I had colorectal surgery booked in a week later which had been a hard spot to secure because of restrictions on elective surgery. I was so worried about catching not only covid but also a cold or the flu… anything that could stop me from going ahead with the procedure. I cancelled all plans, mainly stayed inside and was quite obsessively checking my temperature. I’ve never been more relieved than the moment I got my temperature checked in pre-op and it was all fine.

Thankfully after that went ahead my “I can’t get sick” panic eased and I then managed to have the other two procedures pretty stress free.

I don’t need to have my next procedure until December and it’s been a nice couple of months off and only having my three-weekly oncology treatment to go to.

Then for me there’s also my tendency to mask my chronic illness to just get on with living my best life and being a normal 30 year old. So it did actually take me a good month or so into covid to realise I did need to be a bit more careful for my own health. I admitted to one of the anaesthetist’s that I didn’t immediately consider myself in the high-risk category, to which he gave me a knowing smile as he had just read my 5 editions of hospital notes which definitely suggested I was high-risk!

Sometimes I do forget that my body is hindered by of all my surgery, my ongoing treatment – and the fact I can forget sometimes is telling of the skills of my surgeon and my oncology team for getting me on a treatment that gives me little to know side effects.

It hasn’t been easy navigating health things during covid, but the hospital and treatment centres I go to have been very good with covid safe measures, and whilst I faced delays… I always knew I would get a new date very soon, so I am very lucky.

The extra baggage no chronically ill person needs — March 13, 2020

The extra baggage no chronically ill person needs

Travelling is a huge decision for my chronically ill self at the best of times…

Coronavirus has escalated my confusion and uncertainty to another level! The problem I always have is that I have an invisible illness, and currently my tumour is stable, and whilst I have regular monitoring and removal of my upper GI polyps, it doesn’t stop me from feeling well and being able to be very active and spontaneous with living my life and travelling.

So this is why for the last few weeks I’ve been keeping a VERY close eye on government advice around travel, but thinking with my holiday brain that desperately wants to get to the UK in April for a trip I’ve had planned for a while for a family wedding.

Today was the first time my sensible chronically ill brain started to take over holiday brain and now I am thinking it might be the safest option for me not to go.

Getting it overseas is starting to feel daunting – given I have no bowel and get dehydrated easily, there’s high chances I could respond pretty badly to coronavirus, and I’ll be in a different country in a health system I don’t know (although being in the UK is a pretty good option). Then there’s the realisation that if I do have to self-isolate from getting it overseas, this could delay my tumour treatment and medical procedures and surgery I need to get done (that I could have got done in April).

I’m also realistic that there’s a high chance I’ll catch it in Sydney given how things are going with cases, but then atleast I’ll be able to access my GP and specialists I know and who know me well and my health problems.

I do think writing it out has helped me process and for now I will take the weekend to think it through and what’s best for me and my health.

Never underestimate your impact as a patient — January 9, 2020

Never underestimate your impact as a patient

15 years ago, I went to get my eye checked because I had noticed a black curtain gradually covering my right eye. Before I knew it, me and my parents were rushed in to see an eye surgeon that same afternoon.

We were told I had a severely detached retina and I would need major surgery in a matter of days.

I was 15 years old, in year 10 at high school.

Since then I’ve seen him every year for a checkup and in the early days, additional surgery for further detachments.

Naturally I’ve noticed the passage of time over this periods and seen him grow as a surgeon. Personally over this time I’ve finished school, uni, lived overseas, started full time work amongst lots of other things!

What really surprised and touched me was hearing from him in recent years that it’s been similar for him.

For example, when I first started seeing him, his daughter was a toddler, and thrown in front of him was a pretty demanding teenager who didn’t want to change her life to look after an eye. Now she is around the same age as I was back then and he has joked to me that he now understands why I was the way I was.

What struck me the most was him saying that seeing me each year is like a barometer of time for his life. He still remembers in detail the day I was referred to him and how when seeing my parents he knew he had a huge responsibility to make the right decisions.

Today at a checkup, we marvelled at what a good outcome I’ve had, given when I showed up at his rooms I was close to losing sight in my right eye.

Today was a new milestone in this long relationship. I had to get a scan to check for macular disease that is important to monitor as people get older..

Five years ago, my life was saved — November 20, 2019

Five years ago, my life was saved

In early October 2014, I woke up from a colonoscopy to a concerned looking gastroenterologist. She started asking me about any family history of cancer and from that moment on I knew the cause of my bowel problems were larger than I thought. I think back to that day… five years on… and I see it now as the day that saved my life.

One of the first blog posts I wrote was about my incredibly frustrating and long journey to be diagnosed with Familial Adenomatous Polyposis (FAP). It took over five years of explaining my embarrassing symptoms to multiple GPs with little response, so much so I had given up trying to find an answer.

I can’t imagine where I’d be today if I hadn’t tried one final time to be listened to.

The thing with FAP is that it causes hundreds of polyps to carpet your large bowel – by the time I was diagnosed there were many that were at a stage of high grade dysplasia (next step… cancerous). I was able to take a year to prepare physically and mentally for surgery and do other precautionary things that may be impacted by surgery which I’m incredibly grateful for. But in the terms of polyps turning to cancer it really is scary to think that I could have easily gone on for another year or two without a diagnosis and intervention.

Being treated in time has been so important because on top of polyps in the bowel, FAP also causes me to have lots of polyps throughout very tricky areas of my GI tract (duodenum, stomach and ampulla, next to the pancreas). Whilst unlike bowel polyps that will 100% turn cancerous in people with FAP, these ones still have a pretty high chance and come in large numbers (who doesn’t love a polyp party!)

So at the time of diagnosis this meant that alongside meeting my surgeon for the first time, I was also back in day surgery for a gastroscopy to see what was happening in those other places. Thankfully at the time of diagnosis there were polyps, but they were all the smallest they could possibly be.

I didn’t have to play catch up

Instead, I’ve been able to have yearly monitoring and as required I have the larger polyps in these areas removed. It’s not easy on the mind to live with pre-cancerous growths inside of you, but I take comfort that I’m taking preventative action and my timely diagnosis meant this was possible for me.

Five years has been a long time and it’s given me time to reflect on what I went through to get diagnosed. In my first blog I wrote about one of the many GPs I saw who dismissed my fears and sent me on my way due to my age. His words made me feel like I was overplaying my symptoms and were what stopped me looking for an answer for the next two years. Am I still angry about how I was treated? Yes. But I have managed to process it all a little more and see that this is a bigger problem than this one GP. I’ve connected with more people on social media around the world, and been involved with Bowel Cancer Australia’s Never Too Young campaign and there are sadly too many diagnosis stories like mine.

Through understanding that there needs to be more awareness about bowel cancer in younger patients, I’ve directed my anger and frustrations towards that, in the hope of making it an easier diagnosis path for people in the future.

The wake up call to listen to my body — October 12, 2019

The wake up call to listen to my body

This is a pretty insignificant public plantar pot, but I happened to have a run in with it a few years ago. And by run in, I mean I was walking up to the shops and the world started spinning and next minute I was lying in the plantar, woken up by a passer by-er.

I walked past it today and it made me think how much better I have become in noticing my symptoms and acting before it reaches the point of no return.

In the lead up to this incident, the signs were there. I had started a new treatment a few months ago that my body was still adjusting to. It was less full on than chemo so I let my guard down on keeping up with anti nausea drugs but the reality was I could hardly eat because I was so nauseous and I was definitely experiencing diarrhoea. Yet it became my new normal so I didn’t even think to discuss the symptoms with the nurses. I just kept going and going until my body couldn’t go anymore.

I fainted and was very lucky that I fell into soil and not solid concrete as I did hit the back of my head. I spent the next few days in hospital rehydrating myself.

Dehydration is always going to be a risk for me, it comes hand in hand with having no large bowel to hold and absorb water and nutrients like I did before. Since this day I’ve had more times where I’ve become dehydrated and I have picked up on things like how the taste and satisfaction of water changes and how I feel disorientated and struggle to speak coherently. I’ve also learnt that with dehydration or UTIs that I regularly get, things can go from pretty mild to extreme in a very short time. When I first got sick I didn’t want to be the type of patient who was always asking for help so only really mentioned problems when they were at that point of no return. Reality is, doctors and nurses want to help but can’t when they don’t know the full picture, so I’ve gotten better at reaching out as well.

It’s not easy to have to slow down or check yourself into hospital when chronic things pop up…but I know now from experience that when I do act early, I’m better off in the long run.

Any body, whether it’s chronically ill or perfectly healthy, has limits – don’t forget to notice your normal and what you can do when you’re physically struggling.

Letter of appreciation — August 25, 2019

Letter of appreciation

I never would have anticipated having such grief and emotions over your departure from my treatment team. 

I’ve cried multiple times and then when I thought I had come to terms with the change, I felt all the emotions again when I had my first consult with my new oncologist. 

Funny that just like any relationship breakdown, there are triggers and reminders. The trigger for me the other day was being in the consultation room where so much has happened, with a new doctor – starting a new chapter in my desmoid tumour adventure. 

I realise that incredibly good and incredibly bad news was delivered there… and ultimately… trust, report and a caring doctor/patient relationship was formed in consult room 2. 

I’m not an easy person to win over. I like to challenge things and find ways to maintain that little bit of control in my life. You picked that up from the first few appointments and worked that into how you talked to me, and it didn’t go unnoticed. 

In the early days, every time i saw you I was incredibly nervous about what news would be shared, what my scan results would be. Every time, you delivered news to me in a calm way that made me feel I could keep going and have complete trust in the process.  Here I am, three years later and still showing up every 2-3 weeks for treatment.

Trust takes time to build, but with my rare and aggressive tumour…time wasn’t on our side, yet you managed to get me onboard with starting chemo. When chemo wasn’t slowing down the tumour at a satisfactory rate,  you took ownership of my care during a multidisciplinary team meeting where the general consensus was to operate. That was the moment I really knew you were on my side and were willing to go all out to find the best treatment for me – always with quality of life in mind. 

A rare disease and tumour like a desmoid isn’t easy to come up with a treatment plan for. It really touched me that you found opportunities whilst overseas for conferences to reach out to drug companies trialling treatments for desmoid tumours to find out more. 

You may no longer be my oncologist, but I will always remember everything you did for me through the hardest and scariest time in my life. 

Claiming back lost hope — August 5, 2019

Claiming back lost hope

Hope has been such a powerful and important word for me as I continue along the uncertain and rocky road that is life with a desmoid tumour and familial adenomatous polyposis. 

The many specialists and surgeons I see have always managed to give me advice that is future thinking – whilst being completely honest when things aren’t smooth sailing – and I’m so grateful for that as a young person. 

So you might be wondering why I’ve titled this blog claiming back lost hope. 

What I’ve come to realise upon reflection is the enormity of what chemo took from me. I went through 6 or so months of chemo when I was 27 and as it flushed through my body every week, it really showed my tumour who was boss and stopped it growing, and even started shrinking it. I credit the chemo for navigating me out of an extremely high risk situation…but like everything in life, it came at a cost. 

The visible cost was my hair. Nothing could have prepared me for the trauma and loss I felt. As I started reaching hair goals, I was elated but at the same time couldn’t imagine my hair getting back to it’s pre-chemo lushness and length. Here I am, two years on from my hair starting to grow again, and I still pinch myself when I look in the mirror and see a full head of hair that makes me feel like ME. 

Then there’s what was happening behind the scenes after chemo. It turns out, many body organs don’t respond well to the wrath of chemo – my ovaries in particular. A few months after transitioning from chemo to the treatment I’m on now, my periods stopped and were replaced with pre-menopausal symptoms. With these symptoms I lost hope in my future fertility and options for starting a family. It probably didn’t help that my long-term relationship had just ended as well – hope was not on my side and it felt like my body was failing me at a time in my life it was meant to be in its prime. 

It’s been a rollercoaster ride to say the least, but I feel that I am gradually coming out of the trauma and challenges of life after chemo and claiming back lost hope. 

I recently had blood tests that showed my hormones are back to normal and my ovaries are working again, after two or so years of essentially being in menopause. I picked up on my ovaries working before the blood tests as I have now had two periods. I don’t think I’ve ever been more delighted to have a period in my life! I am still very cautious and tentative on being too positive. As I have familial adenomatous polyposis – it will be a long process of genetically testing embryos because my personal choice is I don’t want to take the risk of passing this on. Then there’s the unknown about the full extent surgery and this desmoid tumour has had on my fertility… i won’t fully know until I try. 

What I am trying to do for now is live in the moment. I’ve gained back so much this year and on the ovary and fertility side, I’ve been handed a sliver of hope that I thought was well and truly lost. 

Most of all, I’ve once again been amazed at what my body can bounce back from.