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 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..

A chronic creature of habit — July 1, 2019

A chronic creature of habit

I’ve just had my longest stint of no treatment – 6 weeks. Sounds dramatic but really I’ve just missed one cycle as I now do it every 3 weeks. It wasn’t by choice, there was just a delay in getting more stock sent over.

It’s been pretty amazing having a break, I even went in for a checkup with my oncologist a week or so ago and it didn’t have that same familiar feeling which was a great feeling. But what surprised me was that I couldn’t completely switch off. It makes sense, I guess, as I’ve been on fortnightly treatment for 3 years now.. with a few weeks off for holidays here and there. I’ve essentially got into a routine, and any change to that I’ve realised can be a little nerve wracking.

It got me thinking about what it will be like when I am able to stop active treatment and will be free, but also left to fend for myself more in the medical world and find my new life routine. Again, it’s surprising that this scares me more than it excites me… but I know it’s something many people affected by cancer struggle with after finishing treatment.

What’s been good about the time off is knowing that my tumour hasn’t changed during this period – which gives me hope for if and when I am able to come off treatment.

As of this week, it’s back into the routine again and I’m sure I’ll be longing for another treatment break!

An extra week — March 21, 2019

An extra week

I’ve reached a milestone I’ve been waiting for a long time for – a change in the frequency of treatment for my desmoid tumour.

I have been given the go ahead by my oncologist and the scientists behind the trial I’m on to see how I go having the infusion every three weeks (I have been doing it fortnightly for over 2 years!)

I had been hoping for every 4 weeks but I’ll happily take this in-between.

It does bring up the frustrations that rare disease patients like me face. I’m part of such a small study (there are only 4 people on the same treatment as me), and my tumour is still largely unpredictable – so knowing how soon to make changes to the regime that 3 other people have been following isn’t something that can be answered, or rushed in to.

So it’s inevitable that while I’m so happy to get this extra time off, I also have started pondering to myself..

  • When will I finish treatment?
  • Will I be on some sort of treatment for the rest of my life for this tumour?
  • If I do go onto watch and wait down the track, how will my tumour respond? I still fear at the back of my head the tumour growing aggressively again, and being stable for so long has lessened this fear greatly but I do wonder what it will decide to do if not being attacked regularly by this super drug!

I know that all will become clear down the track and need to remind myself to live in the moment, things are good right now and that’s evident by the fact I can reduce my treatments.

My tumour is stable, I get an extra week of my life back before having to think about treatment and who knows what I can do for self care and my wellbeing to celebrate this extra time.

What I’ve learnt from being an oncology patient — June 8, 2018

What I’ve learnt from being an oncology patient

Around this time, 2 years ago, I first stepped into the cancer clinic that now is a regular spot for me. I was nervous, uncomfortable and the mere thought of seeing an oncologist just didn’t seem right at my age.

I was coming into the situation in a less than usual way. I didn’t have a cancer, well not malignant cancer. Instead I started the process of explaining to the nurses that I have an aggressive benign tumour that was rapidly growing as cancer often does. I had no specific number of treatments, I wouldn’t even know if the chemo I was on would work at all, there were only a handful of other cases to go from.

I was also nervous having been through the IVF system which I had a very bad patient experience and felt like I was just being shuffled through the process. Sadly there are so many people affected by cancer these days so I thought I would just be another number in the oncology system.

I was very wrong and in fact the oncology doctors and nurses I’ve been lucky to have are the most caring and empathetic in my whole medical care.

I didn’t realise starting the chemo journey that there would be so many other chronic illness things to pop up as a result of the underlying tumour. Since meeting my oncologist I’ve then been referred on to multiple other specialists for things like ureteric stents, hormones, bone density tests, yet my oncologist remains a central point who understands everything and that is a nice reassurance to have.

Then there’s the regular blood tests before every treatment. This started to me as a routine, admin part of my health but now is also part of my care, where the receptionist and staff at the pathology clinic know me well and do their best to help me get seen quickly each time I go in. Simple acts like this make a tedious life as an oncology patient bearable and human.

I don’t know what the future holds for my treatment but I know I’m in good hands in the oncology world.

Acknowledging my medical trauma, three years on — May 2, 2018

Acknowledging my medical trauma, three years on

In September this year it will have been three years since I lost my bowel, it’s taken me this long to fully appreciate how much this has affected me. The bowel is a funny organ to lose. You often hear of throwing parties before amputations or things like that. When it comes to your bowel, how do you send it off in style? It’s not exactly an organ we talk about openly.

My fight or flight response at the time definitely was to fight. I pushed through and didn’t let my emotions get in the way of moving past each hurdle and making a full recovery, although very importantly I did start seeing a psychologist because I did have a lot of fears and anxiety around the diagnosis. I had no idea how to process the news that I needed to have major surgery to remove my bowel. I barely knew the importance of my bowel (I definitely do now that I no longer have it!).
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When you’re invisible — April 21, 2018

When you’re invisible

I don’t look sick. This brings about lots of assumptions about me.

Without knowing me well and just by looking at me, you wouldn’t know that I have short hair because it fell out from chemo. And that because of that chemo and the ongoing treatment I have now I often feel tired and out of energy.

You wouldn’t know that I have a tumour the size of a large mango in my abdomen.

You wouldn’t know that I’m missing my large bowel that means I don’t absorb all the nutrients and fluid that would be useful to have.

You wouldn’t know that I really need that seat on the train, but I’ll make do with leaning on the stair walls.

You wouldn’t know all of this because in order to not be defined by my illness I try really hard to maintain normality and keep going and pushing myself.

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