It has been quite a while since my last blog post, and I have been so thrilled and excited about the release of my book! The feedback so far has been awe inspiring, I am truly humbled.
So, today I need to fill you in on some unexpected, and quite frankly unwanted developments in my health saga...
I've explained to you all in previous posts that I see my oncologist every 3 months, we check for any increase in my 'blood levels' and I also have a routine CT scan. I never really asked too many questions about what exactly is checked from these blood tests, until funnily enough my last 'scheduled' visit on the 18th November.
I don't know why I suddenly wanted to know so much more, but I became very frustrated because I was not getting any clear answers.
I asked Dr M; 'So what is the likelihood of cancer coming back?'
Dr M; 'Within the first year, is the highest probability. With you we will continue checking for 3 years instead of 2 years because of not administering chemotherapy'
Me; 'Right......where would cancer most likely show up though? If I've had my entire back passage removed, is there a common place for cancer to show up in the body for people that have had rectal cancer?'
Dr M; 'Lung, Liver.....but we don't have enough information to really detail any kind of pattern'
Look, I get it. I asked all these questions last time to his assisting doctor and was basically told a similar thing. I think because I am now in a routine of living this new life with my permanent bag 'Stella', I am feeling as though I have fully recovered from surgery and I simply want to prepare for a possible shock if it was to come up.
I also know myself and I am not someone that randomly chooses to lean into negativity or the 'What if's', so where are all these questions and concerns coming from?
I've also shared that I am so fully connected to my inner self. My soul connection is so very strong and I decided to meditate with these questions whilst I performed my self healing for the day.
What came up almost immediately? Something inside doesn't feel quite right. I know this with every fibre of my being. I truly understand what it's like when you are made to feel as though you are being 'over anxious' or 'overthinking' from the 'medical experts'. You know your body better than anyone else, if something feels off it is probably because something is off!
So yes I've had a nagging feeling that something is not quite right.....
In conjunction with managing the 'cancer' side of things, I of course am trying to stay on top of my Crohn's condition. As you all know, I am back in the swing of things with my Crohn's meds. I go into hospital every 8 weeks and have the infliximab infusions. I am going to make this statement right now........I HATE these infusions!
At first I thought it was just my body having to get used to the drug again and that is why it always left me feeling like absolute shit for a couple of days after the infusion. BUT......I am feeling worse after every treatment. I had bloods done to check the effectiveness of this drug in my system; I always had these done in Liverpool Hospital over the last 7 years. What it checks is the amount of the drug still in your system just before you are due for your next round.
Well, I had this blood test done for the first time this year in October, a couple of days before my infusion. I was due to see my Gastroenterologist specialist on November 25th to discuss my condition and determine whether the infliximab is still effective, and also to get the results from the MRI I had done a fortnight prior! Seriously Im exhausted writing all this!!!
Here's the thing though, my appointment was screwed up! The hospital had sent me out a letter back in September stating that my face to face consult with my specialist was being changed to a phone consult and that the doc would phone me on my mobile number. Now, I understand that due to Covid this is oftentimes a necessary change and so I cleared my afternoon and got ready for my phone consult. Hubby also cleared his afternoon schedule so he could also take part in this consult.
And so, I'm waiting and waiting and waiting. Im looking at my phone, checking the signal and willing it to ring......30 minutes go by and I think 'OK, he must be stuck with another patient'....
1 hour goes by.......2 hours go by...... we call the hospital. Our only option is to leave a message for a phone call back. We do that.
No phone call back. Whilst this is happening, we are also in the car on the way to the oncologist for the emergency appointment! (I'll get to that story in a moment!)
We email the Gastro department the next day. I have their email address because I needed to get a new MRI referral sent to me. (I have no direct contact details for my Gastro specialist, Dr G.)
The response back is that I will receive a phone call either that afternoon or the following Monday. Hmmmm, Ok I guess........The afternoon comes and goes, no phone call. Monday comes and goes, no phone call.
By Wednesday I am seriously ropable, I NEED to speak to my doctor! I call the hospital once again and some snooty receptionist is being VERY unhelpful. I promise you I am not raising my voice, and I'm staying calm. He has the nerve to tell me that do I realise how busy everyone is??
The deep breaths I took at that moment nearly made me pass out!! Eventually I am told that I will receive a phone call back that afternoon with a new appointment time. Ok, thanks.
Yep, you guessed it. No phone call back. Another email sent by me, this time expressing my frustration and explaining the urgency in light of the new developments that occurred regarding the cancer markers going through the roof.....(I promise I'm getting to that) and guess what???
Nada! Zero response.....So I have no idea what is going on with my Crohn's at the moment from a medical perspective. I'm feeling helpless, frustrated and unworthy. Not very nice at all. Let's see what next week brings shall we? I will be contacting the patients care department and lodging a complaint. I mean I bet my doctor has no idea that I 'm trying to contact him. I am being blocked from these moronic gatekeepers who are taking it upon themselves to decide that I'm not important enough in their eyes to be put through to my doctor. I'm not happy, but let's park this dilemma here for the time being.
Over the last couple of months I have noticed that my skin around my stoma is progressively getting worse. Very red, sore, itchy and it is super uncomfortable. I have tried various stoma products on the advice from other stomamates and of course my stoma nurse. She freaked out when I sent her a photo of my inflamed peristomal skin! So, I've been dealing with that every day and then suddenly this rash has sprung up all over my thighs, to my knees! Very itchy and red spots. It literally came up overnight. I have never had skin issues on my legs or any other part of my body, so this is really unusual. I look like I have been in battle on my legs, which is so bloody annoying considering it is now shorts weather! So there is that I am dealing with as well.
I have put on weight all over and my tummy in particular is remaining bloated, a sure fire sign of the Crohn's being inflamed.
All in all, it feels like something weird is going on and I just can't figure out exactly what it is!
If you've read my book or you are a family/friend you will know that my dad passed away on the 23rd November 2007. You will also know that my wedding anniversary is on the 22nd November. We had just celebrated 7 years of marriage and we had a lovely overnight stay in Sydney. I was so bloated and uncomfortable that weekend and although we took some beautiful photos, I really had to work on what angle I was posing in to try and hide how bloated I looked. The magic of photography, you couldn't tell at all!
It was Monday 23rd November 2020, and hubby and I had been chatting about that it was nearly a year since I was diagnosed with rectal cancer and wow what a year it has been. We were excited about all the media interest in my book and I was planning a throwback photo from this day last year to today, on the 27th November 2020; to put up on my socials. Cancer diagnosis in the first photo and me holding my book in the 2nd photo.
I'm about to take the first bite of dinner, it's 6.30pm and my phone rings. It says private number and so I decide not to answer it. They can leave a message if it's important, and I'll call them back after dinner. Hubby though for some strange reason says, 'Could it be your doctor?'......
'What the actual f@#k??' I just looked at him and said 'Why did you say that??'
I check the voicemail straight away and lo and behold it's my oncologist telling me to urgently call him back.
And just like that......my world once again threatens to implode.
I call him back, my dinner forgotten with my appetite disappearing. He explains that my latest blood test which I had done the previous week has come back with severely elevated results!
Let me explain in my own terms and for all of you what exactly this means. The blood test I have checks the CA19-9 and the CEA levels. CA19-9 is a protein that exists on the surface of certain cancer cells. It's shed by tumour cells. However, doing my research, in some cases it also can signify sudden major inflammation and has been connected with Crohn's disease.
CEA is a type of tumour marker. Tumour markers are substances made by cancer cells or by normal cells in response to cancer in the body. An elevated level of the CEA is over 3ng/ml.
So is it cancer somewhere in my body or is it Crohn's?
Sorry I digress, back to the phone call.....my previous blood test in August had me at; CEA = 2.2 and CA19-9 = 48. These were considered to be a little higher back then, but caused no concern and I of course did not understand the ramifications of elevated levels.
The last blood test which was done on the 19th November; CEA = 7 and CA19-9 = 112
Hmmmmm, yep they definitely increased!
He tells me to go and get an urgent CT scan done the following day and to see him in his rooms on Wednesday 25th November.
This was the week that I had my meet n greet book launch, a couple of interviews scheduled, my newspaper article was coming out, I recorded a podcast and I now had to throw the cancer card back in the mix!!
So, my amazing hubby gets on the phone on Tuesday morning and calls around the Newcastle/Hunter area trying to get me in to have an urgent CT Scan and I am booked in for 11am later that morning.
I do a full on workout at the gym first and then my daughter comes with me to get this scan done.
Wednesday 25th November- I record the podcast, get ready for my phone consult with my Gastro specialist....(we all know what happened there), get in the car and drive across to the hospital to see my oncologist. The scan shows nothing untoward and that is a relief. I'm ordered to have another blood test on Monday 30th November. Dr M feels it could be an anomaly and hopefully the next test will have the levels reduced again. If they are reduced than no need to worry about anything. If they increase once again, I need to have a PET scan done and he hands me a referral form just in case.
I ask him, 'Could this be inflammation from the Crohn's?'.
He responds, 'I haven't seen this kind of elevation in these levels related to inflammation.'
Great! I've got to say though, I looked up so many medical reports and I just could not get pass that this may be inflammation.
And so, I spend the rest of the week promoting my book, working on my next project and really just focussing on the positives. It really hit me how much I've grown as a person because I have simply refused to allow any fear based thoughts to camp out in my head.
It's like, Bitch please....do you know who I am? So very proud of me, I cannot begin to tell you! I did not want to share anything until I knew exactly what was happening and if the blood test results from the 30th November came back just as elevated, then I would share exactly what I'm going through!
Monday November 30th....blood test done. I love where I get my bloods done. They know me and are always so friendly and hardly hurt me. I say hardly because seriously I STILL loath needles.
No phone call on Tuesday 1st December.....this is good.
No phone call on Wednesday 2nd December.....this is very good.
Phone call on Thursday 3rd December.......Dr M informs me that my levels have increased once again..........I'm in my studio, at my desk when I hear this and I just think 'O.K, let's work out what the fuck is happening? It's power up time biatches!!!'
So now my CEA is at 7.9 and my CA19-9 is at 118.
Time to book in the urgent PET scan and I have to call him after it's done so he can check the system. I will also need to see him on December 15th, I tell you this is feeling too much like de ja vu!
And so I am booked in for the PET scan Thursday 10th December. I am not allowed to workout for 48 hours prior to that appointment, low residue diet for 24 hours and lots of water before the scan. A PET scan can pick up things on a cellular level that CT and MRI's can't.
And so my friends, this is what is happening to me right now. I promised to share the good, bad and ugly and I am devoted to always being open and forthcoming about my journey.
I promise you this. I am feeling optimistic and I'm happy. I know that may seem weird but it's the truth. I have been through so much and I know I am strong enough to get through anything that life decides to throw at me. I have devoted my time and energy on being in a state of gratitude most of the time and it serves me well, especially with this uncertainness.
So my beautiful peeps, enjoy every moment of your lives. Make joyful memories and remember who you are! You are all special, amazing individuals and you deserve nothing but happiness in your lives.
Light and Love