QENDO Speech August 2018
Here is the original text of my speech, I have to admit I did ad-lib a bit on the night, (apologies for the shaky video and sound)
When Jess first asked me to speak tonight I have to admit at first, I was excited but then I felt the weight of the world. How do you sum up an Endo journey in a few minutes?
Speaking about my Endo journey for me is about sharing my story and my experiences in a hope that I can help and inspire others who might be at the beginning of their journey and hopefully give a message that you can do it.
In order to write this speech, I went first to what I know, data. In my career as a project manager I often go to statistics and data to confirm a position or construct an argument for a particular direction. So, sticking with what I know, here are some statistics of my journey:
- I’ve had 10 laparoscopes over 20 years.
- My diagnosis was around age 29-30. I can’t really remember but given all the anaesthetic I’m not surprised, more on that in a moment.
- I’ve had 3 surgeries to repair a bowel perforation – about 14 hours of anaesthetic over three surgeries and 10 months.
- I’ve had 2 occasions of renal failure.
- I’d say probably 15 or so emergency room visits.
- Around 40-50 days in hospital, that’s about a month and a half.
- Approximately a day and a half, maybe 2 give or take, of anaesthetic in total.
- A definite knowledge that I can not have Ketamine and I hallucinate on morphine.
- A disastrous round of IVF, ended in my first case of renal failure
- I’ve had 1 ovary removed.
- I’ve had my appendix removed, 2nd op for perforation repair this was a risk mitigation strategy because now abdominal surgery is too risky for me.
- About 10cm of my large intestine is missing.
- I have some cracking scars on my abdomen.
- I estimate around around 200-300K in lost income, most of that over the past 3 years.
- 7 miscarriages and 0 children
So, there are my statistic, but do they represent a journey, not really. Interestingly I don’t really see it as a journey, I see it as simply just my life. I have had this disease, well at least been aware that I have this disease, for more than half my life.
My journey has been one of a long period of acceptance, and when I say long I mean really long. It was only over the past few years that I actually accepted I have, what is currently, an incurable disease. Those who know me well will tell you I am pretty stubborn, my husband right now is thinking, understatement. I’m not one to accept readily that I can’t do something, again understatement, and not one to accept failing. And for a long time that is what this disease felt like, like I was failing. I couldn’t have children, I had to continually take time off work, or often if I was able to go to work I couldn’t perform at my best. I couldn’t do many things at one time or another, all things I put down to Endo, but is that failing? Well I used to think so, but since I accepted endo into my life, my life got a lot easier.
An Edno journey is a personal one and what I experience is not what others will experience. I actually think I have been lucky as I have always managed to have an excellent team behind me. Sure it took 3 laparoscopes and about ten years to actually get a diagnosis, but since then I have always had an amazing team with me. And I say team because that is what it takes. My team consists of my gynaecologists, I have 2, my GP, my husband and my family and friends. And that is an important point, it is not just the medical professionals that form part of your team, it is those around you who are there to support you.
I’d like to share the darkest hour of my Endo journey, but don’t worry it has a great positive finish. 18th August 2015, laparoscope number 10, all went very well, I had asked my surgeon to have a look at the base of my spine as I’d been having trouble with a numbness in my leg around period time. Surgery was a success and I went home the next day, a day, to quote Winston Churchill, that for me it is a day that will remain in infamy. I’m not exactly sure what time it was, but I was relaxing in bed and my wonderful husband brought me some lunch. I guess it must have been an hour later and I felt a very strange sensation in my lower left abdomen. Now I’ve recovered from this surgery 9 times before, so I do consider myself a little bit of an expert, but this sensation was a little unusual, so I sent hubby a text as he was a few rooms away, but this is how the modern couple works. Between me sending the text, him reading it and walking the 15 meters or so to the bed, everything went a little haywire. I was in pain. Now those in the room with Endo, we know pain, but this was something very, very different. This started calls to the hospital and my surgeon. My surgeon, upon hearing me in the background, told my husband to get me in the car and get me to the hospital straight away. To cut a very long story short, I went into emergency surgery at 2am, the next thing I know it was 8:45 in the morning and I was in recovery and pretty quickly I knew I was in trouble… the number of machines and nurses around me kind of gave it away. I had had a perforated bowl and now had a colostomy bag. And thus began 2 years of healing, some of which is still going on today.
Now, colostomy bags are not the sexist things, coupled with swapping that for an ileostomy bag about 7 months later it was 11 very long months. I pooped in the bath, the shower, I farted in meetings, I actually did a phone interview holding my poop in my hands for about half an hour as the bag has come loose during the interview. This was my reality with the bags.
I was in pain, I had to poop in a bag, I couldn’t do many things, oh and did I mention we were finishing off building a house at the time.
How do you cope with something like this? I remember laying in bed about 3am in the morning after about 10 days in hospital when it all first happened. They wouldn’t let me leave until I could manage the colostomy bag, and, well its poo and I wasn’t interested. At that moment I made a very important decision and had a realisation all at the same time. I was alive, and I didn’t have a choice so my only option was to suck it up and deal with it, which, with the support of my amazing husband, I did.
Now I promised a positive end to the story. Spending a lot of time in hospital, well yeah and occasionally coming a little too close to dying a few times, really makes you think about life. For as long as I can remember I have wanted to have a shop. I know, odd, for an IT business project manager. I love people and I love shopping so really it is a match made in heaven. So finally, a little over a month ago we opened the doors. And it was and is hard work, but it reminds me that I have been very lucky, I am alive tonight to share this story. You can do anything with this disease, you really can, dare I say I’m proof of that.
An average day with my Endo equals pain, but for me the pain is not the worst part. It is all the other things that go with it. The bowel issues, the depression, the bladder issues, the numb leg, the general feeling of crapiness, the unpredictability, and the worst thing, loss of confidence. This disease has taken so much from me, what happened with the bowel perforation took my confidence away, confidence I am still getting back.
But then I remind myself what this disease has given me, yes given me. A core mental strength that I don’t think I would have had without it. The ability to just keep going no matter what. I really think I owe this character trait in a very large part to having this disease.
If you asked me if I could wave a magic wand and remove the disease and any history of having it, part of me would jump at the chance, but then I remember the amazing people I have met, the strength it has given me, the things I am yet to do, and the amazing experiences I have had and am yet to have, speaking here tonight is one of these.
Another bonus of my experience with Edno is I know how to get to the front of an emergency room line. Here are some tips… blood pressure almost off the charts because of severe pain, throwing up in the waiting room, passing out in the waiting room also works rather well, arrive about 6am on the morning of your 40th birthday does hold special significance, I had, we discovered my second case of renal failure, an infection and a blockage in my bowel. But in all of that I have found the most effective is to hold about 20cm of you small intestine in your hands. A little mishap that happened when I laughed too much and too hard.
Living with a disease like this is a choice, you can either live with it or you can fight against it. I chose to live with it. Realising this for me was the turning point. I imagine it is like any disease, the less you fight it and the more you work with it and accept it, well I have found, the better life is. It doesn’t mean you can’t get angry at it occasionally, in fact I highly recommend it, but don’t stay angry, work with it, understand your journey and what works and what doesn’t. Living with Endo is just something you just have to do. It is not something that can be bargained with, believe me I’ve tried. The choice you have is how you live with it. For me my support network is the key. Your family, your friends, your work colleagues and your medical team.
Before I finish I want to share one last learning I’ve had about treatment. There are as many treatment options for living with Endo as there are women with it. For me it has definitely been a journey of trial and error, of listening to all the experts and deciding what was best for me. Since the perforation this has been a little more difficult than before. I’ve tried to exercise, however in exercising and trying to gain my core strength back I inadvertently engaged my abdomen a little too much and it was all over. One said don’t do Pilates, do Yoga, another said Yoga would be one of the worst things to do, platies would be better. Take these pain killers, no try these ones, and don’t worry they will take away the pain by completely dulling your brain. Listen to everyone you can then make the decision of what works best for you. There is no one right way or wrong way to treat the symptoms, trial and error is the key to find what is the best for you.
Most importantly, don’t let the story of my 10th laparoscope scare you from surgery. What happened is rare and definitely not the usual.
Jess asked me to speak about what QEndo means to me. Well answering that was easy and I can sum it up in one word… hope. An army of volunteers whose sole aim is to educate and get the message out about Endo, what more could you hope for. I am proud to support this charity through our shop.
Finally, don’t feel ashamed, don’t feel it’s women’s business and you shouldn’t tell people. Dare I even suggest, be proud. You are part of a group of women who wake up every day with a disease that has no cure, and you get up and carry on. You should be proud to be part of such an amazing group of women, I am.