Forum Discussion
Radiation - my experience
Hi Everyone,
I finished 25 sessions of radiation on the 3rd Jan 2019 and thought I would write about my experience of the whole process. It will be a long post, so get a cup of tea ready :)
Going in to this I was not sure how I would go with rads as I was really concerned about two things: 1 - the out of pocket costs and 2 - being semi-naked on the table (yes, I know this is a bit of a weird one to be worried about).
Out of pocket costs:
I advised my medical oncologist that I might ask him for a referral to a public hospital as I was not sure if I could afford the private out of pocket costs for radiation. He suggested that I meet with the radiation centre and find out about costs first and then decide, I was happy to do this as I felt really comfortable at this hospital. The radiation planning meeting involves three meetings - nursing, positioning and finance meetings, so I requested that I have the finance meeting first as I didn't want to go through the process unless I knew I could afford it.
The total cost for radiation was just under $20 000, however I was put on a payment plan so I did not have to pay anything up front. My total out of pocket expenses for the 25 treatments was $2000.00, and I was able to pay this in weekly instalments via direct debit. The radiation centre at the hospital handled all medicare transactions. I was really happy with the arrangement.
From this experience, I learnt that it is worth mentioning up-front if cost is an issue, it seems to me that there is some flexibility around how you pay and maybe even the amount you pay (not sure though). I guess at the end of the day it is a business and we are the customers (that don't want to be customers!) so our business is important to them.
At the nursing meeting, I was given a gown to use and keep and I also received a 'goody bag' of creams, soap and sunscreen and while I understand that the gown is most likely their way of reducing laundry costs, it did make me feel special.
Mepitel was used on me for the duration of treatment and is still on me as I type this out. I am to keep it on for two weeks. I have a small amount of redness outside of the the mepitel area.
How I dealt with the 'semi-naked on the table' bit:
I get that this is not a big deal for others, however for me, this was almost a deal breaker - the idea of lying on the table with no top on, all the bright lights on me and knowing that the image is projected on screens outside the room just makes me feel kind of sick, I really did not think I would go through with it. Just writing about it makes me feel uncomfortable.
So, I purchased 'baby blankets' from K Mart for $10. I took one to the planning meeting to test out the reaction I would get. I covered myself up with it and asked them to only move it when necessary - and they did! I took my blanket to every session after that and felt a bit better about the whole thing. At each session I had my blanket on me and they only moved it around to confirm my positioning was correct and then I was covered for the duration of the actual radiation. I still hated the situation, but I got through it. There was one radiation therapist that seemed to leave me uncovered unnecessarily, but I didn't have her very often. I just made a point of covering myself when she did this, which of course is a bit naughty as you are supposed to keep your arms up.
The other great thing was that I was able to request only female therapists and this wish was granted as well. I also refused to have my face in any of my planning photos, it just meant that I had to say my name etc each time.
The take away from all of this is ask and be your own advocate, if something makes you feel uncomfortable speak up. The people treating us have probably never been through this and don't understand how vulnerable one can feel.
I hope that this long-winded post can help someone else who is about to go through radiation.
Next step for me...tamoxifen
Hugs to all of you wonderful ladies and guys on this forum
I advised my medical oncologist that I might ask him for a referral to a public hospital as I was not sure if I could afford the private out of pocket costs for radiation. He suggested that I meet with the radiation centre and find out about costs first and then decide, I was happy to do this as I felt really comfortable at this hospital. The radiation planning meeting involves three meetings - nursing, positioning and finance meetings, so I requested that I have the finance meeting first as I didn't want to go through the process unless I knew I could afford it.
The total cost for radiation was just under $20 000, however I was put on a payment plan so I did not have to pay anything up front. My total out of pocket expenses for the 25 treatments was $2000.00, and I was able to pay this in weekly instalments via direct debit. The radiation centre at the hospital handled all medicare transactions. I was really happy with the arrangement.
From this experience, I learnt that it is worth mentioning up-front if cost is an issue, it seems to me that there is some flexibility around how you pay and maybe even the amount you pay (not sure though). I guess at the end of the day it is a business and we are the customers (that don't want to be customers!) so our business is important to them.
At the nursing meeting, I was given a gown to use and keep and I also received a 'goody bag' of creams, soap and sunscreen and while I understand that the gown is most likely their way of reducing laundry costs, it did make me feel special.
Mepitel was used on me for the duration of treatment and is still on me as I type this out. I am to keep it on for two weeks. I have a small amount of redness outside of the the mepitel area.
How I dealt with the 'semi-naked on the table' bit:
I get that this is not a big deal for others, however for me, this was almost a deal breaker - the idea of lying on the table with no top on, all the bright lights on me and knowing that the image is projected on screens outside the room just makes me feel kind of sick, I really did not think I would go through with it. Just writing about it makes me feel uncomfortable.
So, I purchased 'baby blankets' from K Mart for $10. I took one to the planning meeting to test out the reaction I would get. I covered myself up with it and asked them to only move it when necessary - and they did! I took my blanket to every session after that and felt a bit better about the whole thing. At each session I had my blanket on me and they only moved it around to confirm my positioning was correct and then I was covered for the duration of the actual radiation. I still hated the situation, but I got through it. There was one radiation therapist that seemed to leave me uncovered unnecessarily, but I didn't have her very often. I just made a point of covering myself when she did this, which of course is a bit naughty as you are supposed to keep your arms up.
The other great thing was that I was able to request only female therapists and this wish was granted as well. I also refused to have my face in any of my planning photos, it just meant that I had to say my name etc each time.
The take away from all of this is ask and be your own advocate, if something makes you feel uncomfortable speak up. The people treating us have probably never been through this and don't understand how vulnerable one can feel.
I hope that this long-winded post can help someone else who is about to go through radiation.
Next step for me...tamoxifen
Hugs to all of you wonderful ladies and guys on this forum
37 Replies
- Waiting for more surgery then 6 weeks radiation 6 weeks after
havent had planning yet but so far can’t fault the staff at the cancer clinic, they have been awesome
thanks for sharing, everyone deals with being naked very differently, as a nurse at a skin clinic I find all sorts of reactions
for some people taking any clothes off is hard even only to underwear, glad the staff respected that for you as they should have
good luck, I’ve got tamoxifen to look forward too as well 🌷 - Hi LittleBlueWren,
Visited Radiotherapy clinic, discussion was for six weeks of radiation 5 days a week.
Doctor advises me that I have an Oncology appointment on January 25th to discuss Chemo, so if I go ahead with Chemo, Radiotherapy won’t commence until after Chemo has been completed for over two weeks.
Now it all begins........ - Hi everyone,
Just an update, I have some redness coming out now (one week today since finishing rads) an area about 5cm x 2cm which gets a bit itchy and hot if I get hot, eg, while gardening or housework, the gardening is totally worth it though :). I am using a lot of moogoo and other creams that I purchased in preparation. I don't know if it is because the mepitel is coming off though and I am not going back to get it patched up. I am really enjoying being 'free' from treatment at the moment.
My next step is to start Tamoxifen, I am not looking forward to that! I am going to ring around the local pharmacies and find out about cost and different brands, and I will do some searches on here to find out how others have managed.
@Finch, yes, I love birds and love your username as well. I find walking around in the bush looking for birds is so calming (well, except that one time that I disturbed a wild pig!!), I have to listen and watch to locate them.
@Chris51 Best wishes with the remainder of your treatment.
@Mantis Hope your planning meeting goes smoothly.
@Shellshocked2018_ I hope that yesterday went well for you. - The radiation treatment sessions really brought my feelings of vulnerability to the surface and yet I am more anxious about a visit to the dentist and I hate going to the hair dresser. I had a reasonable music experience, what I call 'butterflies and waterfalls" but am still chuckling about the day they played ACDC Highway to Hell. Staff were very kind.
- I was another who wanted to bop to the music in mine! :smile:
- I remember you telling us how they 'lost you' @sister & thought it HORRIBLE - so upsetting - when it didn't have to be!
I also went public and paid ZERO (just a nominal amount for the 4 weeks in Rotary Lodge) and had both male and female techs and had no issues. I had a swipe card that advised them of my arrival & I waited in a well setup waiting room with tea & coffee making facility & a HUGE circular jigsaw puzzle that never seemed to progress - I am sure someone was taking bits out every afternoon ..... and a heap of magazines. When called, I would grab a new gown & put it on (open at the front) which was funny one day, as it opened up as I sat down to read my magazine - and I didn't notice ..... but the guy sitting opposite did! LOL
Every other day, I saw one of the nurses to check my skin colour & ask how I was going. I got a bit red & hot but applied all the lotions (provided by me - none by the clinic.) I started peeling towards the end.
I was face down for mine, so had a great view of the couch, as my face was resting in a 'raised cushion' (sort of like an airline 'neck cushion' only square edged & hard - I was amazed that they thought I had an 'ample bosom' as I've only ever been a 34! However, maybe gravity had a play in it - as I haven't worn bras for 30 odd years! LOL The machine had to be raised up quite high, for the beam to do it's work underneath the couch! So .... when getting OFF the machine, I eventually worked out a method of just sliding my legs & bum to one side & 'feel for the floor' ..... but one day I forgot to wait for them to lower the machine & they had to grab me before I fell off!!
I agree re the music, @sister - boppy music definitely makes you want to twitch!!
I found the final session to be highly emotional & I blubbed big time - face down, with snot running out of my nose! (A really GREAT LOOK cos I couldn't wipe it!) I had become strangely reliant on these lovely people ..... and I was sad (in a way) to be leaving. I also stayed at the Rotary Lodge at Port Macquarie for the 4 weeks & Paula, the manager, was my biggest support - she was just amazing. We just got on so well.
Having Keith fall off his bike & breaking his rib on Day 1 was a real pain tho ....Even tho he was on endone for the first few days and Panadeine Forte for the rest of the time, he was in such agony, he had to be on 4hrly meds (even during the night) and I had to set the alarm clock to wake up to give them to him & that lasted for the whole month of treatment & ongoing when home! So that totally stuffed my whole treatment time, as I was no longer 'the patient' - HE was! grrr - For what it's worth, I'll add my bit...
I went public due to being financially challenged during the previous year. Public for me meant the new Royal Adelaide Hospital and my surgeon said that it was state of the art. I had a bad day with them "losing" me when I went for the measure up appointment but it got sorted in the end.
I never had any issues with the rad appointments. They were scheduled for approximately the best time for me and the couple that weren't, were changed. Car parking was simple and free. Waiting was minimal unless I had to see the nurse or registrar and that wasn't too bad. I had to request Mepitel (wouldn't have known about it if I didn't ask) but there was no issue about having it. For each dose, I was directed to a change room where I put on the gown provided, put my clothes in a carry basket and took it with me to the rad room. A few minutes placing me on the bed correctly and all but a couple of times, the gown was draped back over me when they were finished (apologies were made for the times they couldn't do that - I don't remember why it was but something to do with being able to see what was happening). I got to look at a beautiful lighted ceiling if I wanted to. My only complaint was that they shouldn't play boppy music in the background if they wanted me to stay still. I had male as well as female techs but I never felt that it was anything less than professional. My final consult was a few weeks after rads had finished and that was with the Prof who was my actual rad onc. However, the Registrar was very open and informative with the questions I had. For this treatment, I paid the sum total of $0.00. - I was also a bit thrown by the whole rad. process - felt so vulnerable lying there with arms above my head and different staff buzzing around marking my body, positioning my body etc, etc. I have been known to sunbake topless so it is not as though I am shy about showing my breasts, but this process was quite a bit more emotionally threatening. I did ask why they couldn’t place the sheet over my chest and was told because I was using the breath retention machine the ‘box’ on my diaphragm that recorded my breathing needed to be open in order to create the wifi image. I guess the whole situation is just so clinical. Generally the staff were fantastic and showed great empathy but I will be glad when all is done. At this stage I am halfway there - seems to go on for ever though! Think my topless sunbathing days might be over though!
- I have my planning meeting in a couple of weeks and then the 150kms trip to start radiation and accommodation for 25 sessions. Btw this is my first post.
- Thank you Little Blue wren, I’m going in for my planning meeting this Wednesday 9th.
Feel like I’m going in more prepared, so thank you.😘
