It’s been a year since I had my Total Gastrectomy – complete removal of my stomach! (That actually feels surreal writing it). The past 12 months have been filled with ups and downs and has definitely challenged me both physically and mentally. One year ago today I remember leaving my house, saying bye to my kids and breaking down in the car, both my children were upset and worried about me, my daughter actually woke up that morning feeling really unwell, and I knew she was nervous about mummy’s operation. I remember heading into the pre-op room at the hospital with my hubby and my dad, trying to put on a brave face, joking around and trying my best to hide any kind of fear and anxiety that I had at the time, I really didn’t want to add to the stress and concern for my hubby and dad because I knew they were in for a long day! It was a bit like dejavu, because just 8-9 months prior, me, my sister and my dad were in the waiting room, watching my mum being wheeled off to the operating theatre for a similar operation, only my mum wasn’t so lucky, and they couldn’t remove her stomach as cancer had spread too far by then. As they wheeled me off to the operating room, I saw the sadness in their eyes and over their faces, and I still have that image in my mind, and to this day it can still bring me to tears. I knew from that day forward, life would never really be ‘the same’. And it’s not!
Life has changed, not only physically but also mentally, the way I think about things, especially life in general. I know its kind of cliche to say ‘Life is short and precious’ but you know what, it absolutely is! We all really don’t know when its our time, so take advantage of every day you have here because things happen and they can change your world forever! I appreciate every little thing, I understand how precious life is and I feel even more blessed with what my life is all about. In the past 12 months, I have had a lot of people say to me ‘Dam, you’ve had a lot of bad luck’ or ‘life is so unfair’, and I have to agree about the ‘unfair’ part, life really can feel like it is unfair at times, but I definitely don’t think I have bad luck, if anything, I think I was put on this whole journey for a reason. Since starting this blog, I have met some amazing families from all over the world, families who have the same gene or who have been through something similar, some families who are only just finding out about the genetic condition and starting their journey, and some of them are reaching out asking for my experience, any tips or advice I can share, and I feel so blessed that I can be there for them and be of some assistance. Life really is what you make it!
12 months Post Op Progress Report:
Physically, I think I am doing pretty well. My weight seems to have come to a halt, I think I have only lost one kilogram since January, which is awesome! I did get to a point where I was a little worried about losing too much weight, so I am glad that it seems to have stabilised, and now I am trying to put on a little weight or at least maintain it. My scar is completely healed, it is still visible and basically runs straight down the middle above my belly button, in between my rib cage and is about 8cm in length. In the early stages, I was bit worried about it, thinking I didn’t want to freak people out so I would always have to cover it up but now it really doesn’t bother me at all, actually, I kind of like it and it fits right in next to a couple of other tiger stripes that I earned carrying my 2 babies 🙂 . A couple of months ago we went for a swim down the beach, and I even wore a bikini top, it was the first time ‘letting it out’ as such, and although there were a few people checking it out (just for curiosity), it really didn’t bother me, and my kids actually love looking at it and touching it.
You might remember from my previous posts that I was having a few hypos where I would randomly start shaking, have the sweats and need to grab a handful of sweets to make it go away. I finally got in to see a specialist just last week and after doing a few tests, I was advised I have Post prandial hypoglycemia (also known as Reactive Hypoglycemia).
What is Reactive Hypoglycemia?
Simply put, reactive hypoglycemia is a blood sugar disorder; it’s a symptom of an underlying condition. If you have reactive hypoglycemia, your body’s gluco-regulatory system (the part of your body that turns food into fuel) does not operate normally. You will experience blood sugar highs that you probably won’t notice, and blood sugar lows that you most probably will (ranging from mild shakes and feeling ill, to severe nausea, fainting and even seizures).
If you have reactive hypoglycemia you’re going to notice a host of strange and alarming symptoms an hour or two after eating a meal. Shakes, sweats, nausea, mood swings, blurred vision, confusion and lethargy are all common symptoms for the condition. In severe cases, you may faint or even have seizures (which can be a medical emergency). (www.reactivehypoglycemia.info)
The specialist I saw was amazing, he gave me some great examples of how this all works and what I should do to try and prevent and minimise the low blood sugar levels. One thing he has advised is to monitor my sugar intake (I may need to cut down on my yummy desserts at night) and also try and focus on a Low G.I diet (low glycemic index). Glycemic Index (GI) is a way of ranking carbohydrates according to their effect on blood sugar levels. The lower a food’s GI value, the slower and less severe it causes blood sugar to rise when you eat carbohydrate-based foods. Basically, low GI indicates the food is digested and absorbed more slowly in my system, which is what I need.
I do still have moments of fatigue throughout the day, but i think that generally comes down to how much food I have eaten that day, or if I have been racing around and haven’t really had time to sit and just rest for a minute. I am also having my B12 injections every 6 weeks (I had one yesterday), and after my next shot, I will have blood tests to check my levels and see if I can then spread them out and hopefully eventually get it down to taking them every 3-6 months. I have started walking more often to start building up my fitness and I have been given a home based weights program from a exercise physiologist that I should be doing on a regular basis (still working on that 🙂 ) I am noticing that some of my meal sizes are increasing, sometimes I can eat probably about half a plate size of what my pre op meal sizes would have been, and for those who know me, I used to be a big eater – kind of like one of those people who would eat until i literally couldn’t fit anymore in. So I’m pretty happy that I can actually see the sizes increasing, I’m pretty determined to beat the odds and put on weight (despite being told this wasn’t going to happen)….so watch this space!
Emotionally / mentally, I feel I am getting stronger. Every now and then I might sit and just think back to a moment from the past 12 months and just cry, but to be honest, thats probably more based around my mum and not having her physically here with me and going through this journey without her. I am learning to face life challenges without my mum but its pretty hard, the toughest part for me at this point is when my children ask about her. It was my mums birthday 2 weeks ago, and my kids wanted to have a cake to celebrate Grandma’s birthday, we sat around talking about all the cool things Grandma used to do and all the memories we have, this was a beautiful experience, and I love doing things like that. And then just 3 days ago it was my sons birthday, after having heaps of fun at his party, he then asked me ‘when is Grandma coming back from the rainbow and heaven, she’s been gone for a long time now and I think she’s gotta come back soon’, its those moments that take me right back and make my heart sink. I actually had no answer for him straight away, and my 6 year old daughter could see it on my face so she jumped in and started explaining to her little brother where Grandma was and that she wouldn’t be coming back anytime soon. Although these conversations break my heart, its a beautiful thing to see how much love and admiration my kids have for my mum and I know its something they will have for the rest of their lives. We explained to my 4 year old son, that he could talk to Grandma anytime he wanted by looking up to the sky or even in his dreams, and he was happy with that.
One whole year of being ‘stomachless’! Am I happy with my decision? Absolutely!! I have accepted this journey I am on and trying my best to embrace my new lifestyle, and as long as I feel like I am always moving forward, then I’m happy!