How much must one suffer?

So I hinted a few times prior to my big walk, on 1st Sept that something was not quite right in my belly! I will start repeating stuff in my blogs as talking to folk, it seems there is a lot of learning which is my aim in writing this honest and frank account of this nonesense going on in my life right now!

I guess its like when you watch a film over, you get more oout of it that you may have missed the first time.

Truly fed up this week. So had a CT scan monday, saw oncologist friday, walked 20,000 steps on sunday! My CT scan was clear. Well not clear but wasn’t lightimg up like blackpool lights so no one was worried.

I’ve told you that I am really in tune with my body. Every part of it. I just know when something is not right. So i mentioned it a total of 3 times to my onc in that meeting but it seemed at that point all was ok or something was just starting.

So right now I could pass easily as 6 months pregnant.

On wednesday last week, I took a turn and started to throw up. Not nice but hasn’t happened so far so just dealt with it. Something is pushing on my belly and I am unable to eat or drink. Meaning just that, physically unable to eat and drink. Probably drink half a glass of water without force and bit of brek and lunch and not a bean after 1pm. Maybe an apple at 10pm if there is space.

I spend the entire night rolling around the bed and on the floor cos I am so delerious to do anything and very uncomfortable to lie any which way. Its been 10 days and as you can imagine, I am now a bit worse for wear.

I got so dehydrated it was visible on my scaly skin. One night I was in so much pain, I took liquid morphine which I have in my drug stash. I can understand why folk turn to drugs and alcohol….. sometimes you can’t take any more and just need the ‘pain’ to stop. I’ve been non functional for about a week. Kids started new school and school year around me. That is just truly annoying. I managed to pick and drop Amar on his first day of secondary by force. Stayed in bed since, but here he is. I really love the uniform in Khalsa colours!!

We know the school well and Amar has settled fantastically since day one which made our job a little easier. Gets up like a star boy and is totally independent in the mornings with no hassle. They have school made pizza on fridays and Amar said he loves the school so far!

Spoke with my team and managed to drag myself in for 9 this morning. Needless to say, I ended up staying all day and got home at 5pm. Had bloods done, stomach x-ray, and on IV meds and fluids for 4 hours. I slept through most of it. Ive been taking anti-sickness meds also in my drug stash from chemo as never needed them then, which is helping with the evening sickness. I swear, on another day, I’d be getting someone to arrange a baby shower !!!

Then out of nowhere, Amar appeared back from school, convenient as the school is about 2 mins from the hospital!

Gurv stayed around the whole day and just sat by my side while I slept. Amar entertained me for the last hour! Had my trio of super nurses, in order of appearance…. Eileen, Priya and Leslie and then Dr Eric!

You know, I am feeling trash all day when no pics are taken apart from above. I mention Dr Eric as I was explaining the belly bloating, the sickness, not sleeping, the pain, not eating, dehydration….. poor Dr kept saying ‘Oh I’m really sorry’ at every symptom. Bless him…. not his fault but he was genuinely sorry about 8 times over !!! Plan is to scan again and investigate further. After today and consulting with my cholangio friends, I think I’ve narrowed it down. 3 people have exactly same symptoms. At least its not just me and another ‘rare’ side effect and theres no Number 3!!!

Today I’ve had a cup of tea, a slice and a half of toast, a custard cream an about 6 spoons of carrot soup. Thats my limit. Oh and a litre of fluids!

I am home and trying to relieve some symptoms so I can get a decent evening and nights sleep.

This included, firstly a pack of wotsits. Cos they are soft! Morphine to ease the pain, peppermint essential oil mixed with coconut and applied on the belly to relieve bit of bloating and a hot bath with epsom salts to draw out any toxins and grated ginger to energise. I swear…. any bigger and I’ll be getting more stretch marks!

I will attempt to get on my infared biomat before bed if I can manage it!

How was everyone else’s day?