Regret?

Something I need to address, is the feeling of regret…

I often look back on the fall of 2016 and wonder if I’ve opened a can of worms or embarked on a rollercoaster (all feelings I’ve mentioned before, depending on how I’m feeling that day, both mentally and physically).

Sometimes I will joke with friends if I have an AMAZING plate of food in front of me, by saying something silly like how “I wish I still had a stomach”, which usually makes said group of friends feel uncomfortable… I wish they didn’t feel that way. After all, it’s only my dark and daft humour. I definitely don’t “wish” that… After all, I know I made the right decision.

Something I found difficult was what was said to me around Christmas time. Someone that I have a close relationship with saw me, and after a few drinks, got chatting with me about how much weight I had lost (at that point I was at my lowest weight at around 49/50kg after my second surgery). They confided in me that they had noticed, and then proceeded to ask me if “I had regretted” having my stomach removed. I was shocked. I didn’t regret it, and it’s still something that I don’t. At the end of the day, I was the one that opened “pandora’s box” by opting for genetic testing, and thus found out I had cancer upon the first screening… (This is why it annoys me that my medical notes have now been changed to “Prophylactic Gastrectomy”. There was nothing “Prophylactic” about it… The cancer was already there and I had surgery sooner rather than later because of this.)

I was naive to think that it would be all smooth sailing, and that I wouldn’t lose so much god damn weight, but the cancer was already there. Should I have ignored it and carried on as normal? One thing that I’ve learnt over time is that cancer does not discriminate. Regardless of your diet, lifestyle and age; the big C does not give a shit. I figured that out soon enough in our family, and after joining the CDH1 Facebook group, I found out even more so how ruthless it is… This group has helped me in so many ways, in ways that I can not begin to explain. The members have become an extended family to me; people across the pond in so many different countries that I feel connected to because we all discuss the elephant in the room, and how it’s affected our lives… Through this group, I’ve discovered that this pesky mutation and cancer has taken people much younger than me… So whilst I’ve never regretted having my stomach removed, I want to express the fact that I never did, and never will. Yes, there’s been obstacles and hiccups along the way, but nobody ever said it would be easy. I’ve had the most central part of my being removed; my storage tank, the thing that gives me fuel. But this very thing, would have killed me if I were to leave it be.

So no. I have NO regrets…

1 Year Stomachless

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.

Recovery
In Recovery (26.09.2017)

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!)

1year
1 Year on (26.09.2018)

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