My world as I know it has been flipped upside down. I feel as though I was punished for being too positive and so I have an internal dialogue waging war inside my head....'You will fall again, it's only a matter of when versus 'No you won't, focus on getting strong'......fun times!!
And so I left this story the last time with my week, post second surgery in hospital and all the good times had there!.. I'm finally discharged and home for the weekend of the 22nd February.
I am hunched over, in colossal pain, tummy is gurgling sounding like a raging lion with the merriment of severe cramping accompanying it!
Yes, feeling fine!
Now I have to note here that I was subdued coming home second time around, and it was simply because I was afraid. I was hypersensitive with my emotions, still crying suddenly and feeling so despondent. I could not lift myself out of this place and I felt shame for not being able to. A lethal cocktail of heightened emotions!
I was also hyper sensitive to touch, so showering and changing my stoma bag was almost unbearable. Yuck all round.
My body had undergone so much that all I could do was sleep(which was a rare occurence) and it was all that took away my fear and quietened the nightmare thoughts racing around in my brain.
So this magical adventure went on at home for the next week and my cancer medical team appointments were looming. It was just too much for me to process.
The first appointment is with my oncology radiation team and hubby is driving us to the 'Calvary Mater', Newcastle's cancer hospital as it's known! I'm pretty good in the car, chatting and singing along to some great songs. We arrive and check in and I'm becoming very nervous. A nurse calls my name to take my weight, height and to ask me some questions before seeing the doctor and her posse. I am clearly traumatised and I start to sob! I am freaking out and I cannot take on anything else. Luckily the nurse was very caring and non judgy, and she ended up being able to soothe me.
Yes, ladies and gentlemen, the real Saby has left the building and at this point I have no idea when and if she's coming back.
I am called from the waiting area and am met with a team of four medical staff. The usual questions about how I was diagnosed with colon cancer. I explain the whole saga including the last two months of supercharged excitement! I mean it's a long bloody story, they seemed captivated though, I was going to offer them some refreshments so they could sit back and relax whilst enjoying this shitshow! Anyway, the tears are flowing as I'm recounting it all and there is genuine concern for my mental health! Yeh, you and me both!
Finally the doctor comes in and explains all the findings from these last surgeries and the MRI and CT scans that were done.
This is where I really believe in 'everything happens for a reason'.
I was told after the first surgery that radiation and chemotherapy would need to happen to ensure that all the cancer cells become obliterated. I took the time to absorb this and prepare myself for a minimum six months worth of treatment, in whatever form that may have looked like. I was in Limbo land waiting to tackle this part of the journey....(previous blog post explaining all this, if you guys and gals recall...) And then the obstruction happened and we all know what happened there!
Because of this obstruction and hence emergency surgery, they (medical teams, surgeons etc) were able to understand ALL of the complications associated with my condition and the most blaring fact was that my chronic medical condition that I have battled over twenty five years; 'Crohn's Disease' was in fact not dormant and very much activated throughout my entire small bowel. The previous assumption was that it was only active near the rectum and that with the removal of the entire back passage, the Crohn's was also removed.....unfortunately this is not the case.
With this new information, the risks associated with administering radiation in an active Crohn's environment is detrimental. If any of the radiation emissions filter through to even a tiny particle of my small bowel, it could result in severe complications.
So because of this, it is recommended that I do not go through any form of radiation therapy.
I have to be honest, I was relieved. I simply could not face anything further at this point. The good news is that with fifteen samples taken from lymph nodes, none of them showed any cancer cells, so the probability that all the cancer has been removed is sitting at around 80% to 90% of never coming back.
Now, today this fills me with optimism and a great sense of hope and positivity for the future, at the time though, in the despondent mindset that I was suffering with, I had a million voices offering lots of really shitty and scary prognosis'! Fun and more fun!!
Back to these series of events....I then met with my chemotherapy team and not to repeat everything that I've mentioned above, all I'll say is that it was a very similar discussion. My chemo doc was very reluctant to recommend any chemotherapy after the surgery, with the Crohn's disease very active once again.
So....all in all I'm both pleased but also feeling as though a game of russian roulette is being played out with my life!
For the next 12 months I will be needing blood tests to check cancer levels, CT scans and MRI's every 3 months to check for any growths anywhere else in my body and continued hospital visits with both teams to keep a close eye on my case..... The 10%-20% possibility which is the bullet that is then fired from the pull of the trigger could be any little cancer cell f@#ker that has made it's way into my bloodstream and decided to take a vacation somewhere North, South, East or West of my body!
Can you imagine the dialogue playing out on repeat in my head??
Whilst all this is happening I am also trying to manage my new stoma. The revision has made Stella shrink and become more introverted, kind of like me for the start of 2020!! What this means, is that I was now having to re-educate myself on how to care for this new 'Stella'. Where I never had any issues before of leaking from my ostomy bags, now it was becoming a daily occurence! I needed a new style of ostomy and again I jumped into research from all the sources available to me. I also developed nasty red irritated skin around the stoma site and a rash in the surrounding area where the appliance sits on the skin.
So, I'm trying to heal, trying to get a hold of my emotional mental state, trying to manage and control this new way of living and on top of that I start to develop complications from my rectum area that has been sewn up back in January!!
This one morning about a month ago I woke up to stickiness all over my abdomen, yep the bag had leaked once again. Now the previous day, I kid you not, I literally had FOUR bag changes. The bag just continued to pull away from my skin and was not staying put. I could not sleep and honestly had not slept for more than a couple of hours each night since my second surgery. I was exhausted and very highly strung.
Anyway, I jump out of bed and head straight for the shower to clean myself up and I see some blood dripping down into the shower drain. My initial thought is that it must be from the bleeding around my stoma as it's so very badly irritated. I finish showering, dry myself off and sit on the towel placed on the toilet to start the process of applying a fresh bag. When I stand up the towel is drenched in blood....What the actual F@#K????
I am beside myself at this point and hubby investigates and confirms that my back stitches have opened and are pouring out blood! (So sexy!)
He wants to take me to hospital and I'm adamant that I'm staying put! I had my Gastro specialist appointment the following day at the hospital, I was certainly not going to check myself into emergency for this! F@#k that!!
To paint a very pretty picture, I spent the day with maternity pads (yes plural) wedged between my legs. I felt like I had just given birth! Ah, memories!!
Got through the day, did not bleed to death! Bonus! Made our way to the hopsital for my appointment the next morning. The bleeding has eased off but it's still seeping.
Long story short....I see my new Gastro specialist (Lovely Man), he organises some referrals for scans and bloods to be completed and the intravenous drugs I will have to commence once again once I'm healed from the surgery. Now he is not a surgeon but I explain what is going on down there and he kindly calls a nurse in to examine the war zone downstairs. His reaction was priceless! He was horrified and asks me to please wait while he contacts my most recent surgeon. Luckily Dr P (my surgeon) is doing rounds around the two hospitals. (The Newcastle public and private are attached to each other, thankfully), and says he will drop in to see me in less than an hour. I mean how good is that kind of service? Silver lining peeps!
We hang around, grab some coffees and a bite to eat and get called back in to the Gastro suites.
Dr P has a look and also freaks out! Kill me now!!.....So he thinks that there has been an infection under the surface and that is why an opening has split open so all the blood, pus and mucous could make it's way out. (I'm sorry if you were enjoying a snack whilst reading this blog. I'm sure I've turned your stomach. Soz! )
His solution you ask?
DR P: 'Sabrina, I am pretty sure we will have to operate'....... (I have now entered the twilight zone for real!)
DR P: 'I want to see you next week and if nothing has changed, we will get you in the following day and operate'.
ME: 'O.K, thanks'.........
Hubby and I leave. He's looking over at me and asking me how I am. At this point I'm just numb. I've nothing to say. I feel defeated and 'why oh why is this all happening to me' is the soundtrack on repeat that is blaring in my ears.
So the next few days, I'm down in the dumps and I have an MRI booked in for the beginning of the following week. I'm still having bloody discharge from behind, not as much as the first couple of days but consistently still coming out.
My son is my designated carer for the day of my MRI, we head across to the appointment, he puts some epic tunes on in the car and I'm feeling grateful at least that the music is picking my mood up a little.
(Side note: I have to mention that to travel in the car since the second surgery is painful. I have to position a couple of pillows on the seat for it to be bearable. I am still hunched over and hobbling around. I have not been able to walk straight yet.)
We arrive and there has been a mix up of arrival times. I need to go back the following day! Great!
Here's the thing though....this turned out to be the best thing that could have happened!
Serendipity story being served up.....
As we were close to the water, my son suggests that we go and grab a coffee at a gorgeous cafe overlooking the water before we head home...so we make our way there.
Some of you may know that I am an accredited energy healer and have been since 2012. I had my studio set up at my last residence and would see my clients on the weekend or evenings during the week. More-so when work wasn't so insanely busy. The reason I'm mentioning this is that whilst I was trying to get through this very difficult time I felt so disconnected from my power within. I wasn't able to tune into all the energies that I've been attuned with over the last 8 years and this was a major factor of my despondency and sadness.
Anyway, we are walking (I'm hobbling) to this cafe which is on a strip of different eateries, quirky shops and lo and behold a spiritual shop! I have not come across one since moving to the Hunter area and it had been more than six months prior to the move that I had last visited a crystal/spiritual shop.
I had to drop in and the owner takes one look at me and starts talking to me about my condition!! She is a medium, I had no idea!
She picks up on the two surgeries, picks up on the cancer, picks up on the ostomy bag and absolutely picks up on my disheartened spirit.
I felt such a sense of needing to have walked into this place, and I start to feel the tingle.....the tingle of connection to the power within. She recommends some crystals and how to best utilise them to 'power me up'!
I immediately felt lighter, it was one of those moments in life that change you forever........
To be continued my beautiful friends.....I can't wait to share what happened next... stay tuned.
Thank you as always,