So what did I actually do?
On the 9th August I opted to undergo a prophylactic bilateral mastectomy (full removal of the breast tissue) and my reconstruction journey started that day with the insertion of tissue expanders (will explain in more detail) under my chest muscles. I also had the top of my lymph nodes taken out and sent for biopsies, while I was under, to be tested for cancer to check if the full removal of the lymph nodes needed to take place – fortunately the nodes were clear and they didn’t need to remove the rest. During my mastectomy, I had 2 drains inserted (one on each side) to drain fluid, these were attached during my whole hospital stay, one was removed on day 5 and the other removed the morning before I went home (day 6). The drains were probably the most challenging part of my hospital stay as I needed to carry them everywhere I went, and the removal of the drains weren’t very nice too, but this was necessary to assist in preventing infection.
Why did I do this?
As a female carrier of the CDH1 gene, I was put at a high risk of developing both stomach and breast cancer (underwent Total gastrectomy in 2015). After seeing first-hand what stomach cancer looked like with both my sister and mum and being a part of their journey, it was an easy decision for me. I also have family members who have been through or going through the breast cancer journey. I know there are people who don’t agree with my decision or who think it’s a drastic move, but to put it nicely, no one will really understand other people’s journeys / stories until they have walked in their shoes and seen or experienced the things they have seen. The reason I chose to go down this path is simple – I will do anything I possibly can to be here on this earth as long as I can with my children, hubby and family. After losing my mum, I know now more than ever, how much my children need their mum around x Drastic? I think not. Is it an easy journey? Absolutely not! Worth it? Dam right.
What are Tissue Expanders?
Tissue expanders are basically like a flat balloon that is inserted under the muscle at the time of your mastectomy. It is a breast reconstruction technique which involves expansion of the breast skin and muscle using a temporary tissue expander. It is used to slowly stretch the skin and prepare it for a permanent implant. The expander has a metal port that allows the surgeon to find the right spot (magnetic) to insert saline over a period of a few weeks /months. I will have liquid injected weekly or fortnightly, depending on how my body takes to the expansion, and once both my specialist and I are happy with the size, I will leave them to settle and allow the skin to slowly stretch. A few months later, I will undergo another operation where the expander is removed and a permanent breast implant will be inserted. This is NOT a free boob job! This is months of painful / uncomfortable stretching of your muscle and skin. Every day is different, but one thing is always the same – discomfort. The easiest way for me to describe the expanders at the moment, it is like having heavy weights tied to your chest (tightly), it can restrict my movement at times but it is something I am getting used to and will need to accept as this is what I’m in for in the next few months.
Here are some images that illustrate the process of the expanders:
This recovery journey has been up and down. I guess after my last surgery (Total gastrectomy), I had always expected this one to be much easier, and to be a smooth recovery and to an extent it has been. Both my follow up appointments went really well, the specialists were really happy with how well my recovery was going, my incisions have healed nicely and everything seems to be doing what it needs to do. I think sometimes I put a bit of pressure on myself and have high expectations of where I wanted to be by this stage, but I am learning to lower those expectations and take things easy. The biggest challenge for me at the moment is not being able to do much with my arms as I have restricted movement right now, and can’t lift my arms above my head or carry much weight. It’s the small things around the house, like no vacuuming, hanging out washing, bringing in the groceries, these things that we always take for granted. It’s hard for me to sit and watch my hubby and my dad do everything around the house, but I am so lucky because neither of them have complained once or made me feel like a burden, and they do it all with a smile on their face.
My husband, dad and kids have been by my side from the day of the surgery and their unconditional love and support has made this journey so much easier, I really don’t know how I would get through all of this without them. To be honest, I have had a couple of ‘down’ days where I just feel overwhelmed and emotional about everything – the discomfort, the incisions, the impact on my family (e.g. not being able to cuddle my babies), missing my mum and wishing she was holding my hand through this, and the physical restrictions associated with this process. I’m ok with this, I let myself cry it out, break down, chat with my hubby and get it all out, and then I move on. I’ve found that sometimes I just need to take some time out and allow my emotions to pour out, once I’ve done this, I always feel so much better the next day and feel more ready to move forward. I just remind myself how blessed I am to have found out about the CDH1 gene before it was too late.
What’s the next step?
Tomorrow will be 4 weeks post op, and I will be going in to meet with my specialist to have my first expansion. I have heard mixed feedback on how this will go, for some it is quite painful and for others it has been quite easy and they’ve had no pain at all, so will see how it goes for me tomorrow. Depending on the quantity of saline injected tomorrow, I will probably have around 4 sessions of expansions, either weekly or fortnightly. Once the expansions are complete, the expanders will settle for a couple of months at which point I will go in for another surgery to exchange the tissue expanders for a permanent implant. The entire process can take around 6 months.
Once again, I have been blessed with amazing support, from some whom I have never met. While in hospital, I was given 2 handmade cushions for under my arms and a little bag to carry the drains, these were made from volunteers who spend their time creating things to help out those affected by breast cancer. We received freshly cooked meals from families at my dad’s church, The Church of Jesus Christ of Latter Day saints, each night for the first week. We received frozen meals from my children’s school, gifts, flowers, fruit hampers and more. A huge thank you to everyone for their support and love, the phone calls, visits and messages mean the world to us, and it’s always nice to know we have an amazing support crew there for us whenever we need them. THANK YOU!