GI CANCER (colorectal cancer) - my journey has begun

[PTDT]

Well it's been the first week of treatment with RT and ONC after diagnosis mid September. I'm hating the PICC line and having to carry around the bottle of chemo and must remind myself it's for the better (I have people that depend on me) so need to remain positive that this will all be okay in the end. It's quite confronting to find yourself face-to-face with mortality. We all think of it from time to time but it's a different demon when it's YOUR demon. Before treatment Cancer was just another word. It came with digestive symptoms but it was just a word. It didn't change who I am, or how I felt physically - just additional knowledge was provided after seeing the colonoscopy and endoscopy photographs and understanding why "my normal" was not normal. Local Dr put it down to stress - deep down I knew there s probably something else happening. When speaking with local GP he was reluctant for the tests to be done and after a second or third visit when I demanded something be done have in to my request. He was as shocked as I was with the test results - but it is what it is and we must now deal with it as best we can. Thankfully stage 2. I haven't heard anyone say it was caught early but asked an ONC nurse how long this tumor could have taken to grow - 10 years was the reply. Anyway that's the start of my journey. More when I feel like sharing PTDT

[Jules2]

Hi PTDT I hope everything goes smoothly with your treatment, well as smooth as it can go when you are having chemo. A cancer diagnosis is very confronting which is something that those on this site understand. All the best for you treatment and you will find lots on this site very supportive if you feel the need. Julie

[samex]

Hi PTDT, I have been on the same journey 6 years ago. My was Stage 3 and here I am!!! The Picc line sucks and I wish I could say that you get used to it, but you do learn to manage it. My oncology nurse used to call the pump our fashion accessory and they had a variety of colours to choose from for the bag for the pump. Anything to lighten the load. Hopefully, you have someone who can help look after you. My only advice is to try to look after yourself as well and don't worry about getting everything done. Just do what you think needs doing. As Jules said, there is a great deal of support here,and you are never alone. Take care.

[PTDT]

Thanks for the kind words. Back at work today and going to do my best to work through this but it's the small things that are just getting to me today. Took my 11 yr old son along today to the appointments for ONC bottle change and RT so he can better understand what is happening with my treatment. Now he has a better understanding of the great people that are supporting me medically to beat this. Anyway better get back to the coal face. As a friend of mine said - your day can be full of BS (Bubbles and Sunshine)

[PTDT]

Has anyone had confusion and slowed reactions while on chemo and RT? This is week 2 and today it seemed to kick in about 3 - 5 hrs after today's treatment Sorry (chemo is constant feed with me for 6 weeks)

[Jules2]

PTDT Yup re confusion and it lasts after treatment also, so don't be suprised to find yourself forgetting things you normally would remember. Walking into a room and forgetting why you are there. Your body is undergoing a lot of shock at the moment so just take it as it comes and although pushing through things is good on one hand, no point in pushing yourself too much. Julie

[samex]

Hi PDTD, Without meaning to be flippant - welcome to chemo brain! I admire anyone who can work while I on chemo. I was a teacher and only managed a very small amount until I had to pull the plug. Fortunately I had months of accumulated sick leave so it wasn't a financial issue. Sounds like your regime is different to mine. I had fortnightly 4 hour infusions and then went home for 3 days with slow pump. I then had a week off - just a visit to have picc line dressed. I had this for 6 months. I hope the people at work are being considerate. S

[PTDT]

Hey Julie without chemo I'd walk into a room and forget what I was doing 🙂 It can only get better

[PTDT]

Heading into week 3 and this weekend I've really noticed that the wind has been knocked out of me. Tasks that I would do easily are now taking more time and energy - even to the point where I needed a little nana nap in the arvo (the cat has taught me well). Just feeling fat and lethargic and would love to get out on the bike for a ride but there is so much that needs to be done here at home and the weather is appalling. Tasks are done in little bits - then a lay down and rest. I was told tiredness would kick in later in the treatment but this is only just 1/2 way and I'm pooped. What is it going to be like towards the end of 6 weeks? Maybe I'm being a little lazy and this is psychosomatic? Brain says go and do and at same time says have a rest. I feel both guilty for wasting a weekend and needed rest too. Both flip side of the coin to each other. Happy times I keep telling myself are at the end of this treatment Cheers

[PTDT]

An interesting flip of the coin with today's health and well being. Yesterday i was heady, unsteady and lethargic and all I wanted to do was sleep. Today I'm 10 ft tall, bullet proof and feeling pretty good with life, a total 180deg flip from yesterday. It's not until you have your bad days that you can truly appreciate the good days. I have been surprised that simple tasks can sap the entire life force out of this body. My wife's car had a flat tyre and I needed to change it. It took all of my energy (and some) to change that tyre, but after the task was complete it was time for a nana nap. I'd like to thank all the wonderful people looking after my health and treatment regime. Some really special people work in the "care industry" and it is these people that make this journey somewhat enjoyable (if you can call the treatment enjoyable - but it's the journey to the final product, the cure!). I'm not sure that makes sense and I know that my editor friend will probably correct me here - I know what I want to say but it's a mess. Time to seek out some support groups and see what they can offer. A sympathetic ear, a different perspective, a different journey and a unique experience that only a few in "the club" will understand and appreciate. Another chapter in my story continues....

[PTDT]

OMG what a week it has been! Had to change a tyre on the car last week - that knocked me out for the afternoon with energy levels sapped completely. Tuesday morning I awake to find that I have pulled the picc line connection from my arm attachment - off to the hospital for a new bottle (Tuesdays are my refill days anyway) but the safety valve didn't shut off the chemo - so I arrive with a chemo covered arm. Not good, but not distressed. Tuesday arvo - couldn't work as I was just too drained. Slept most of the arvo off and on. Wednesday felt awesome, normal and super human. A really good day but a few more toilet trips than usual. Thursday - lots of burning (OMG what pain is this in the waterworks and the bottom) wow - really takes it out of you but now I have wipes, creams and potions to better manage these symptoms. Still not a happy place. Friday - RT as per normal. Perfect landing on the belly board so 10 points to me. I know where to land as there is a bar that runs across my chest and is mighty painful without my required additional padding. Wait to see the RT Dr. Called into his consult room where he disappears for 30mins or more and then brushes off pain and management. Maybe he's heard it all before and I'm doing the right thing but even some qualification that I'm managing all well would be good. Nurse had suggested that we have a look-see at my bottom this week just to make sure and then the Dr just waves it away with the flick of a hand and a "I'll see you next week" line. Not really happy and not feeling really important. Back to work for the arvo and managing my symptoms Have a great weekend -

[PTDT]

Today is it. The last day of RT and chemo before surgery. I was told I was in for a rough ride initially but you cannot prepare yourself for the pain, sleeplessness, burning, and frequency of visiting the loo. To describe the pain - it's like sitting on a white hot coal, dipped in acid and rolled in glass. It's horrible!!. Walking with my wife to a work Christmas party I laughed as it looked like she was walking a monkey - you know that wide-crotched waddle walk they do? Well that was me! Lasted all of 20mins at the party then home. Even had more fun that night with a trip to hospital in the ambulance as I had a fever and the chills - not good when on chemo (febrile neutropenia). A short 4hr stay with a course of antibiotics and I was home. Now if I could only just shake this bronchitis as coughing causes leaking issues. Looking forward to being untethered from the 5-FU through PICC. Some I know gave their bottle a name - me, I just didn't want to get attached (hehehe). More later friends