Before I reflect on one part of every hospital stay that is always frustrating for someone with a j pouch, I do want to say my 2 recent admissions for pancreatitis were fantastic and the nurses looking after me (aside from one) were amazing as always.

It’s safe to say that whatever I’m admitted for, my bowels (or realistically the tiny bit of small bowel remaining) always comes to the party. That’s because I usually need IV antibiotics, I’m usually dehydrated and quite often not eating much at the time (j pouches get hangry, fast). When you have ~2 metres of bowel left, it doesn’t respond well when your body is fighting something.

So it was no surprise when a few days into my acute pancreatitis attack the waterworks suddenly started happening. I’ve learnt from previous admissions that it’s better to ask for what you need, than wait for it to be offered. I promptly asked the nurse for big incontinence pull-ups, and the following day asked my specialist to be charged gastrostop.

I understand its process and part of monitoring to find out roughly about patients opening bowels and the consistency, but the anticipation of this question and having to explain my unique “plumbing” gets me every time. So of course the question starts happening and to be fair most nurses listened and adapted their language to be like, for your normal how has it been etc.

Unfortunately mid way in my first stay, a real stickler for the rules and process sort of nurse comes on duty. I ask her for gastrostop and she proceeds to give me a lecture on how it can actually really block you up if you take it when you don’t need it. I’m a good patient, so I nod and say yep I know but I’ve been charted it by the doctors.

She starts asking me how many times I’ve opened my bowels had that day and my honest answer is that I don’t know. She replies, come on, it’s not that hard, give me a number? At that point I am so annoyed I just say – I am wearing pull up pads because I can’t control my bowels right now – and no joke, she still asks me for a number. Is it not embarrassing enough I’m a 34 year old needing to wear adult diapers?!? That clearly made her reflect because she came back, and said ok I get the sense you know what works for you…. *duh*

The other question and line of investigation that always happens is – “we should get a stool sample to see if there’s an infection going on” I always say, there 99% is not because this happens all the time because like I’ve said, I have close to zero bowel so antibiotics and being unwell and not eating causes this every time. The only time I did say yes to a sample was earlier in the year when I had an abdominal abscess because to be honest that came out of nowhere so there could have been something with my bowels too.

I write all of this knowing that you can’t change a whole system for the outliers, but it does raise the question that’s being talked about a lot at the moment – how do we make medical care more focused on the individual patient? Are there common follow up questions we can embed into doctors rounds and nurses monitoring that are more inclusive and make the patient feel heard.

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

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.

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..

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!

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.

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.