It’s crazy to think that this time last year, I was laying in the operating room having my stomach removed. The past 12 months have flown by so quickly – it feels like it was only a few months ago since I was in hospital.
It’s been a challenging 12 months – both physically and mentally. I felt somewhat prepared, but in hindsight, nothing can truly prepare you for such a life changing procedure.
In the recovery ward, not long after being awoken from the procedure, I told B that I was glad that I’d done it – and that still stands. I’ve never felt an ounce of regret, after all, I’m cancer free. But there are times that I wish that I still had my stomach, and moments where I miss that “rumbly tumbly” feeling (since I never feel hungry anymore), but I guess this is normal.
Despite gaining 9kg prior to surgery, I’ve gone on to lose 23kg; both body fat and muscle. Prior to surgery, I was fit, healthy, strong, and had a bucket load of energy. Now, I feel like a completely different person and it’s taken me some time to accept that it’s still going to be a long road ahead, “a marathon, not a sprint”, as B often says to me.
During my recovery, people have told me not to lose any more weight, which is difficult for me to hear since it’s easier said than done and I’m trying hard not to. I know it’s not meant maliciously, but it still hurts. There’s been days that I’ve stepped onto the scales and bawled my eyes out after seeing a lower number glaring back at me. Prior to my knowledge of having the CDH1 mutation, I was striving to lose a couple of pounds through diet and exercise, and had even tried things like “Slim Fast” shakes! Fast forward to a couple of years later, and I’m adding butter and cream to my morning coffee! It’s funny how things change…
I’ve also had people tell me that I look well, especially those that haven’t seen me for some time, and of course this is a positive boost. But a lot of the time, how I look on the outside, doesn’t reflect how I’m feeling on the inside. People assume that I’m well and fine, but I’m just not there yet. If I plan a full day out now, I need the following day to recover (sometimes two days). Some days I need to take a long afternoon nap, because I get lethargic easily and can’t focus on what I’m supposed to be doing.
This year, I’ve been away 3 times: spent a weekend in Poland, 2 weeks on Fjørtoft and 3 weeks in England. During my visit to Fjørtoft, I ended up being admitted to hospital because a viral infection had spread down my oesophagus, making it difficult to eat, and in England, I was very sick for 9 days and struggled with malabsorption as a consequence. This is just a crappy reminder that I’m nowhere near where I want to be just yet, physically.
Mentally, I’m also not where I want to be. Prior to surgery I had a few counselling sessions to help me deal with the whole situation and prepare me for such a big surgery. Back then, my anxiety stemmed from the procedure itself and anticipating being under sedation for so long. In hindsight, I was probably afraid of dying. In the months that followed, I felt better – I was alive and recovering well. What I hadn’t prepared myself for was my “new normal” after surgery, and the other tests that I would have to go through – Breast Cancer screening, the other side to the CDH1 coin for us ladies. Despite holding off for a while and trying to figure things out on my own, I decided it was time to go back to counselling.
Anyhow, despite a few hiccups and bumps along the way, I’m proud of reaching this milestone. I’m aware it’s still a long road ahead (much longer than I initially anticipated), but milestones should be celebrated! So tonight, I’m going to drink a glass of bubbly, and take my stomach Plusheez out for a beautiful Italian meal! (and B of course!)