Forum Discussion
Radiotherapy
Hi..6 months in, and only on letrozole..had a course of other tablets ( can't recall, starts with pl..) Was told chemotherapy, then radiotherapy, had one scan after the other and biopsy.. Now saying 5 weeks of radiotherapy, anyone had similar?? Need information please on alternatives if any, side effects, etc..can't be gone for 5 weeks daily from home ( SN son), but need to apparently.. Its also an hours drive each way to closest hospital that offers it, so train or coach everyday, and long wait for return home..community transport will cost $250 a week( can't do that)..any information would be greatly appreciated.. Hope your journey has brought a happy ending.
11 Replies
- Looking for it..:-))
- hi again @Joarden,I’ve sent you a PM
hugs Tinks xx - Hi @Joarden - so you have to go to Canberra for treatment? You should be covered by IPTAAS for fuel reimbursement (it relates either to single journeys of 100km each way, or a weekly travel in excess of 250k - but would need to check.) I am amazed that the Community Transport don't have an arrangement with them to cover your costs, as there would be plenty of Goulburn people travelling either to Canberra or the Coast for their treatment.
I was able to stay at the Lodge at Port Macquarie for the 4 weeks for minimal costs (like a motel room with a communal kitchen.) It was terrific - they even cooked dinner for us one night. Is it just you and your son? Have you looked into lodges in Canberra? Once you've been 'set up' - The treatment is usually all over within the hour, leaving the rest of the day to rest or go sight seeing?
Maybe contact IPTAAS and ask their advice. They may be able to help.
http://www.iptaas.health.nsw.gov.au/
http://www.iptaas.health.nsw.gov.au/For-patients
Good luck - I hope you can find a solution that works for you xx - Hi
We are in goulburn unfortunately, there is community transport, but its $50 a day..also trying to work out how I can be " invisible " at home for that long..sounds like machines are a bit cranky!! Thank you..take care, hope all is good with you xx - Hi @Joarden - I had 4 weeks radiation & apart from warmness in the breast & some reddening - very little in the way of Side Effects. I think the mental preparation for it is worse than the actual procedures!!
Where abouts are you (city/Town? You can add it to your profile so others know too.) Can you contact the Welfare officer of the Hospital where you are having the Rads done? They may have an arrangement with drivers to get you there & back. I know that where I am, travel is organised for patients. (1.5hrs each way)
Having to rely on public transport would be a real pain. :(
The machine broke down for me too! LOL
Just make sure you keep the lotions/potions up to your area being 'nuked' .... and for at least 4 weeks (or more) afterwards as well, as the area will remain very 'warm' for some time.
Take care, stay safe xx - Great!!! Seems like machines break down regularly, not exactly comforting!! Glad its behind you, and hope you are doing well..:-))
- I also had the machine break down twice, could have been three times but they changed me to a different room for my final one and didn’t say why. The first time was my third treatment and they rang just before we were about to leave to rearrange it for a few hours later. The next treatment was cancelled completely but they explained that it was just like it was a long week end and one being missed was fine. You get an extra day added on at the end so don’t actually miss any.
- Hi
Very few side effects sounds great!! The machines broke down for you too??!! What happened then!!?? What happens at the end of treatment, more testing?? The funding would be great, but the logistics of missing chunks of time every day from home is going to be almost impossible..:-(( thank you again..:-))xx - Hi @Joarden,
Aside from your travel issues (I too was fortunate to only be 25mins from the hospital) I had very few SE's from the radiation. I had 30 rounds and my skin only started to break down after about number 22. Compared to chemo it was a walk in the park. No fatigue at all and the hospital was very obliging working the appointments around my work. It's pretty quick normally. The machine broke down twice as well :)
It's an absolute pain in the ass having to go every day and in your case even harder. Definitely see if you can get any funding from some source.
All the best lovely. xoxox - Dear @Joarden, it sounds like a nightmare. As far as I’m aware, radiotherapy is radiotherapy ie there isn’t anything like it, you have it or you don’t.I too had 5 weeks, 25 sessions. Is there any help from cancer Australia, rotary or Zonta etc? Community transport at $50 a day sounds like a lot to me. Is there a State based subsidy for long distance travel? Others on the forum will know more than I do.When you are there I found it was all done in under 30 mins except when the machine breaks down- only twice! But even with short trips in it takes a chunk out of the day.
on practical note I got my times on a Friday for the next week. Not a lot of planning time there. Need to be assertive!!
This probably isn’t helpful for your sons needs, but some places have accomodation near the radiotherapy so you can stay in the week?
As for RT itself, I had a long haul of EC and T chemo first and very few breaks, I was fatigued week 3 onwards and after as well. I also had skin side effects that were worst after the RT was finished,like they said it would.All in all, it’s different from the other treatments, I think I was just exhausted in general. Worst time for me was definitely after the 5 weeks was over. Others report having a much easier time after therapy than I did.
i hope you can find a way to do this though. RT is an important therapy, the results are there from years of research. I hope you and your medical and wider team can work out a way.
lots of love Tinks xx
