Shrinking the Silence

Sharing a voice on living with rare disease

Author: Sofi

Claiming back lost hope — August 5, 2019

Claiming back lost hope

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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.

A chronic creature of habit — July 1, 2019

A chronic creature of habit

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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

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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.

I’m rare and these are my stripes — February 27, 2019

I’m rare and these are my stripes

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Every year on the last day of February, rare diseases are recognised, as well as the challenges that come with the disease such as getting an initial diagnosis, being listened to by health professionals and finding treatment options.

There have now been five rare disease days since I received my diagnosis of Familial Adenomatous Polyposis (FAP) in October 2014. My initial diagnosis was then followed by another rare disease linked to FAP called a desmoid tumour.

The zebra often symbolises rare disease, because of the uniqueness of their stripes that all tell a different story – no zebra is the same, but there is common ground in that they all have black and white stripes.

It took me a few years to acknowledge the power of finding that common ground with others in the rare disease and chronic illness communities, but since I have it has made the burden of being different and going through struggles you wouldn’t even think of in your 20s that much easier. Knowing that I’m not the only one who has struggled with identity after chemo-induced hair loss, or that life and socialising takes it out of others as well and prioritising rest is a must from time to time – it’s things like this that I have found so helpful through connecting with people.

These days I also appreciate much more the opportunities that come up to raise awareness about rare diseases. A few months ago I felt really happy that during a hospital stay, for dehydration whilst overseas on holiday, I could raise awareness about one of my rare diseases, the desmoid tumour. I’m in such a routine of seeing doctors who have familiarised themselves with my condition that I forget that majority of medical professionals will never come across this type of tumour in their career. The doctor I saw during that stay was so surprised at how aggressively it grew in my abdomen, and genuinely was interested in how it was being treated.

There’s lots of hope and promise coming out of research into desmoid tumours, and smaller pharmaceutical companies (or subsidiaries of the larger ones) who are taking an interest in rare disease and rare cancer treatments. I’m also so grateful for organisations like the Desmoid Tumor Research Foundation in the US that keep fighting for answers for desmoid patients like me.

2019 is looking hopeful for me. My desmoid tumour is stable, and has been for close to three years. I find out in a few weeks whether I can look into doing my treatment less often and that to me is a HUGE milestone so I have all my fingers crossed.

To all the new j-pouchers out there — October 23, 2018
So many things to be happy about — August 30, 2018

So many things to be happy about

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After two years of active treatment for my aggressive desmoid tumour, I finally feel like things are back on track and that there’s more going for me than just hope, I have consistent scan results that show shrinkage each time.  The tumour hasn’t grown since the end of 2016 and things are looking promising that it will stay that way for the near future at least.

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Reflecting on my rare disease journey — July 4, 2018

Reflecting on my rare disease journey

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I started my blog and sharing my story because of the isolation I felt, the intense silence I felt around rare disease in my daily life.

Hopefully I have helped a little and will continue to shrink the silence for those who read my story.

In my own experience, since sharing my story and joining the online social community, I feel like the silence has shrunk for me.

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

What I’ve learnt from being an oncology patient

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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

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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

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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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