Just a few questions?

[keepontruckin]

Hi again everyone. This is my second post......I hope I am doing it right? As I said in my first post I find the emotional aspects of battling cancer very difficult. I do appreciate the answers and replies I have received so far.....thank you. I'd like to know of those dreaded side-effects of chemo? I am on a regime of 48 hours on (Bottle in a bum-bag) and then two weeks off. I find the four days after the unhook very difficult. Extreme fatigue, numbness of the lips, extremely sensitive finger tips and toes, a fowl taste in my mouth and disorientation and I get the shakes several times a day. I have no nausea thank God. I am alone in Melbourne and find the isolation very difficult. I was actually on holidays at Cann River in Victoria when I fell ill (real bummer)I was having my first holiday in two years. I was a B-Double truck driver doing the Adelaide/Brisbane run carrying grain (hence the username of 'keepontruckin). I have been largely on my own since early last November as all of my family are either in Sydney or Adelaide. I find this site a huge inspiration as I can communicate with people who are on the same wretched journey as me. I think it is only those going through cancer who really know of just how difficult this nightmare can be. Family and friends try to comfort and sympathize and support.....but they just can't understand how bloody awful this battle really is!

[harker]

The answer to your question is "Yes." Keep on doing it. There will be people in Melbourne to talk to as well. I had the bum bag thing for three courses of chemo. It was attached for four days, then three weeks off. The first week fatigue was just amazing. You have experienced the same thing. I used to call the bum-bag unit "Malcolm" because whenever it pumped a few mil into my arm it made a little noise that reminded me of the movie Malcolm. Have you seen it? John Hargreaves and Colin Friels, I think? Anyway, they have a pillar ashtray on wheels that they move around a bank with a remote control. It had a camera in it to help them rob the bank. And whenever it moved it made exactly the same noise as my chemo pump. So it became "Malcolm". H

[Jules2]

I had something different ... 3 weekly cycles and 3 of them ... i was ill for the first one and then really ill on the 2nd and nothing on the third (they changed my anti semetics). Then i started radiotherapy combined with monoclonsal therapy and the fun really started. To be honest it made the chemo a total breeze to get through. I am still trying to find out answers to my questions re the monoclonal and believe i am still suffering side effects from it. One day someone will provide me with answers. lol Hang in there!! Are you staying at a cancer council place or private accommodation? I am wondering if there are any support groups in melbourne, thinking if you called the cancer council helpline they could tell you. That might help alleviate some isolation problems for you. Good luck Julie

[Versaillon]

Hi there My hubby is doing chemo for bowel cancer here in Melbourne 🙂 He also does the infusion in hospital, then takes home the little bum bag and pump for 2 days. Chemo is every 2 weeks! He gets similar symptoms to you - extreme fatigue, numbness in his toes and fingers, foul taste in his mouth and OMG the worst smelling farts EVER! If you find you're getting bad neuropathy, perhaps speak to your onc about lowering your dose. Last thing you want is for it to become permanent which was one of my hubbys big concerns. The isolation would be so difficult - being a carer, I find sometimes I feel isolated even though I'm surrounded by people. I'm sure there must be some support groups that you can go to for cancer patients that may help alleviate the isolation. The Cancer Council would certainly help with that :) Just take care of yourself and come chat with us whenever you need.

[samex]

Hi Peter, I had a similar regime to yours. I called my bum bag my jet pack, like Harker , due to its whirring sound.I also had a fortnightly 4 hour hookup in the clinic and then came home with the 48 hour jetpack.Such fun!! My advice would be to let people know about the neuropathy in your hands and feet.You may ned to reduce the dosage. This isn't a problem. I had to have mine reduced twice due to the white count being too low and neutrophils dropping too far. I have had ongoing problems with my feet due to the residual neuropathy from chemo and that's why I think you need to let the powers that be know about your discomfort. The other side effects like taste and lips went away not too long after treatment stopped. Re fatigue - nothing much that can be done probably. My belief is that this is the worst and most common side effect we all experience. Perhaps get in touch with the Cancer Council Helpline or ask at your clinic if ther5e is anyone around Melbourne you can touch base with seeing you are so far from home. That must be the pits. Anyway, we are always here and yes, unlike even the most well meaning frinds and family, we understand the fear and the crappiness of it all. Take it easy and hang in there. Samex

[samex]

Hi guys, Just reread some of these. Versaillon my family called my farts "chemo farts" and the dog used to run for miles when one accidentally slipped out!Of course as the diarrohea and everything grew worse as treatment continued I copped even more flack. As if it was my fault! How funny is it that when you start talking bowel cancer, the conversation always turns to toilet talk!! Nothing is sacred any longer - particularly bodily functions. S

[Jules2]

I think if i ever have a bum bag its gonna be called "Norman"!

[larn75]

When someones stared at Tommy while we were out one day, I said 'quick honey, move, I think she is eyeing off your stash' another time we got strange looks he whispered something about being visited by aliens, and yet another time I said to him, 'did you just go?' I know, you're all thinking about that saying, small things amuse small minds. hehe. I said to one of the nurses at onc clinic, is that all you got here? Over at the other clinic they have Chanel. She wet herself laughing. I do like Harkers bag 'Malcolm'. Must tell Tommy that one. Fatigue was a biggy for Tommy as well, and he did get neuropathy also. Take care Alana

[samex]

I know that I am being flippant again and I hope that I don't offend anyone. Maybe if the breast cancer people get their well deserved pink show bags, we bum bag people could at least have designer colours?! At the hospital where I had treatment, one of those amazing creatures called oncology nurses, actually went and purchased out of her own pockes some rather stylish ones that could either be slung around the waist or over the shoulder. The unltimate fashion accessory. S

[Jules2]

Hey Samex Thanks for the reminder because i had forgotten i was going to get my mum an her cronies to make some bags up. One of the girls who stayed at milroy at the same time as me, made her own and it was much more stylish. :)) Julie xo