Rise of the machines😩🤬🥴🤢

Temple

Is anyone else terrified of the scanners, the beam, the other thing that’s round? It’s been building for weeks. I can call it out right now. This is my first “phobia”. It’s not claustrophobia. Just looking at them terrifies me. And so does everything else - the powerlessness, it’s impersonal and cold, it’s poorly organised, the staff nothing special, not helpful and simply got a job to do, and seem
completely  unaware of how utterly horrible the machines look,
how disempowered and vulnerable a persons may feel. I have endured this for all the presurgery scans of machines I don’t even know the name of. And then some staffer asks me to tell them
what tests I’ve had. I don’t know! My wallet knows. I’ll ask my wallet. How  bout I do that?  WTF do you not have records of what is happening to me? 

Now the idea of my ugly fat self and my ugly fat disfigured boob popped out and exposed while lying on some fugly board attached to what looks like an instrument of death, in a fugly room while people stare at me, and doing it every day, yeah that’s more than I can do.

I’ve read about shorter durations etc for radiation, but nobody has mentioned to me who gets this? Why not me?

 I am starting radiation therapy next week.

Has  anyone ever bailed on radiation? ie not complete it? Is there a way to make this less terrifying? I could give it a go but may quit. I don’t think I can do it. I wasnt scared or anxious when being told of the breast cancer diagnosis, or and wasn’t anything other than upbeat during the surgery.  This machine scanner boobs out bullshit. Nup, nada, nope,

That’s how I feel today.

brightspace

Hi my dear sorry that the hebbies have got to you ..maybe Halloween to blame 
As others here will say 
You can do this ...
generally the staff are very considerate
In July my 90 year old stoic mother managed to do five weeks of rads for skin cancer to nose .she looked awful by the last week but the staff and driver were amazing
I was amazed by her inner strength

Yep monster bland edifices of the ct machines are the part that I don't like it's a  long road ahead as am metastic with slow progression
Always keeping busy
Cyber Huggs

Bright in hope

Afraser

If you need to direct your (suppressed) fear and general sense of unhappiness towards anything, a machine is not a bad target. It’s not going to get upset by your dislike or treat you differently because of it. It’s not judgmental, as you say it’s quite impersonal, and it’s not malicious. Sooner or later, we all need to take out our frustrations on something and recognise our fear. Hate the machines by all means if it helps but don’t confuse hating the machines with what staff can do with them. Machines are just instruments, how you use them is the critical bit. Radiation seems to me to be a very tough treatment but those who have gone through it have different stories. To a certain extent, it’s just one more tough treatment - like surgery or chemo. Fear is a natural reaction to the treatment we go through for cancer, and of having cancer in the first place, it’s not anything to be ashamed of and we have all been there. It’s hitting you now because it was almost bound to do so at some point. I am certain that some members of the network can provide helpful information to get you through the next stage, at least to give it a go and see how you feel then. But also think about some counselling, some independent professional advice about coping with all this unexpected stuff in your life. It can really help. Best wishes. 

May20019

Hi Temple I can relate to your post completely. I found some of the staff very off hand and the rad process freaked me out too. It is very intimidating your lying on a hard plastic "bed" with (in my case) both boobs exposed and a machine slowly moving around you making odd noises. I hated it. I decided that having breast cancer treatment was like having a baby no privacy and no dignity you just have to get on with it. The staff are of course just doing their job but when you are feeling so low and vulnerable it is hard to get past the shit stuff.

But hang in there while it is shit you do get use to the routine and on my first day I told the staff that I was very nervous and apprehensive and they were very kind.

Big hug to you.

Keep busy. You will get through this!

I hope all goes well for you next week.

kezmusc

Hey @Temple

I did answer some of your question on the other post.  I found radiation the easiest (if that's a word you can use during this) I had next to none of the side effects you read about. My skin held up really well until about treatment 25. Even then it healed fast afterwards. The treatment is pretty quick. You normally spend more time in the wating are than acrually doing it.  @May20019 is correct.  Like having a baby.  Leave your dignity at the door, and go somewhere else in your head. The tecnicians have seen it all before thousands of times.  
The best part about radiation is the big rope you can use to pull yourself up with at the end. 
xoxo

Mightystar

I work for a company that manufactures these machines and we endlessly talk about the patient experience. It’s something we all don’t understand unless we have been there. I asked my colleagues who sell, market and work clinically with these machines around the number of sessions and was strongly advised to take the lower dose with more sessions than the higher radiation and fewer sessions- it being safer overall. 
I was afraid starting radiotherapy. The big cold room, the cold breast plate I had to lay on, being left alone and not being able to move. I breathed through it. I spoke to the nurses. I wore crop top type bras I could pull down or singlet tops with a bra in them so I could regain my dignity quickly. 
I got to know the machine. How it moved, the colours, the marks on it, the sounds. The stickers on it they had for the kids, they calmed me as well. Each session after the first was very quick, in and out in 15min.
Radiotherapy was not as scary as I imagined. Is there something that could help you with it? Taking along something, finding out more info, a song you can listen to, a ritual afterwards? I used to walk then have a good coffee afterwards. On the last day I swapped coffee for wine 😊. Be kind to yourself, you can do this x

Sister

It does seem so impersonal but at the same time, undignified.  I'm sorry to hear that you have had uncaring staff - I have been fortunate with most of mine.  My experience of radiation, in a busy public hospital, was that the staff are well aware of how vulnerable we are and that for many of us, resilience has worn down to nothing.  The therapists and nurses who looked after me were at all times considerate and caring, and I could see that they were the same for other patients, as well.  I hope that this is your experience, too.

arpie

@Temple  I must have been really lucky with my radiation treatment - at every appointment (daily) I had terrific people looking after me & making sure I was very comfortable & OK with what was going on.  They even asked my choice of music right at the beginning & put it on in the back ground as I was 'put in position' (which takes longer than the treatment!)  

Like @kezmusc - I found the radiation almost 'easy' ..... tho after 4 weeks, I was quite emotionally upset on the final day, as they'd become quite an important part of my daily routine - and I was surprised when I couldn't stop crying on the last treatment!

I even had some 'funny moments' (as I was 'face down' for my treatment,never realising I had 'pendulous breasts!  I've only ever been a 34!)  So I had to have the gown opening facing the front ...... not realising that when I sat down, the flaps 'opened' and I was 'flashing' the gentleman who was sitting opposite!! 

Funny - over the last 18 months since my detection - I am no longer self conscious at displaying my breasts to pretty well anyone!!!  hehe  The gentleman was a real gentleman & made no reference to his 'free peek'!

Try not to work yourself up before you start ..... it is a means to an end - to prevent recurrences - so I hope you find it as 'easy' as a lot of us have!  xxx

All the best xx

kmakm

Oh @Temple, you poor love. If it was me I'd go straight to my GP and tell them that that your emotional response to cancer has finally emerged in the form of this phobia. That you want to complete your treatment but that you were going to need some help in the form of some anti-anxiety meds in order to do so. It will only be for a few weeks, and I can't see why you wouldn't be given a prescription.

You will of course get used to it a bit once you're underway. Humans do adapt to all kinds of weird things. But honestly, don't beat yourself up about reacting like this. Cancer bloody sucks on many levels. Get some pills, get through rads and then put it behind you.

The biggest of hugs, K xox

Beryl C.

@Temple - hope you are feeling re-assured - just being diagnosed is enough to 'put us in a spin'. All the attention plus the ginormous machines, how they look, the noises they make - the whole production can be very nerve wracking. Its very ok to admit to being overwhelmed or scared and I agree that a counsellor and seeing your GP might help. When I was diagnosed (8yrs ago) I asked my oncologist for something mild to help me sleep and lessen my anxiety, she was happy to oblige. I've found it useful and supportive to talk with my Breast Care nurse rather than a friend or family member. Its ok to ask someone to go with you to any appointment or procedure, I find it such a relief to walk out of treatment to a friendly and familiar face.

Mira

The majority of the staff that I dealt with when having radiation were really good.  Only one or two treated me like a piece of meat, and that was at the end of what would have been a long day for them.  I was always in and out pretty quickly.

I liked when they were moving me into position, they used to say things like "perfect", "great", etc so I started taking it as a compliment and saying "Thankyou".  It was really nice to have someone fussing and telling me I was perfect, even though I knew they meant the positioning and not me.

Afraser

My surgeon, may he live forever, bounced in to the consulting room after viewing my mammogram with the happy advice that ‘You are perfect!’. Like you, @Mira, I take it as personally as possible! My body has the clear track marks of my age, not to mention my mastectomy scar, but as a one time colleague said, who used to address business corro to the Wonderful Mr X, or the Brilliant Ms Y, it pays to advertise. Believing the advertising, if only for a day or two, is good for you. 

Silba

Like all the treatments , the machines are just there to help you, yep they are noisy. cold and frightening , but imagine if it wasn't there for you.

I had 25 rounds of rad, the staff at least at my hospital were wonderful, chatted before and after , made it seem normal , thats how you have to see it as, like getting your nails done.

Your boobs are nothing special to them , get to now your team and then the person is the one that matters we use to talk about what song could be played while  lying down getting zapped , maybe your hospital offers that too.

Im 50 yrs old and most of the techs are the same age as my grown kids 24 and 25 , so I treated them like my kids ,talk , joked and asked them about themselves.

I finished treatment in late January this year, had to go back for something else in October, a couple of the techs were walking pass and stopped to say Hello, which I thought was nice considering the number of people they deal with.

Good Luck.

Temple

Thanks Silba. I’m definitely not getting the vibe that this will be any more personal than getting my nails done.  I have from recent experience developed very low expectations of the staff, medical specialists and receptionists which has helped. I’ve decided not to be a nuisance or ask any questions because they are Very Busy People who speak to me like I’m
4 years old. I give the private health system one star. When I start the actual radiation in a week or so all will be revealed. But the American Cancer centres have terrific You Tube flips so at least I’ve got some info from there. Otherwise I cannot engage in One More Conversation about mild sunburn and lotion. And not paying for it either. Chemist does it for free. 🤣

Michele B

Hi @Temple
I do hope your experience is mych better than you are expecting. 
I am in Tassie and went through public system for my 7 weeks of rads and could not be more impressed about the amazing, caring staff I met on a daily basois. They were amazing. Like Silba, many of the staff were the same age as my adult kids, but never made me feel self conscious or anything  uncomfortable.  We chatted each day about all manner if things and i finished treatment feeling totally cared for by tjeseylung and very professional people. I do hope your experience is a positive one. Take care and best wishes xxx

Temple

This is my appointment yesterday. In the first hour of hanging around all anyone had done is ask me for money and financial consent. The receptionist did a good job of seeming surprised I was there, no idea who I was, clacking furiously at her keyboard, somewhat annoyed, until she confirmed yes I did have an appointment, oblivious to maybe cancer patients might be nervous. It was not welcoming nor respectful. She announced to the whole waiting room my name and procedure.
In the next hour four different people at different times pulled me into a room, any vacant room but not booked for such a purpose. Each time we had to tour the place looking for a room and apologise to any other staff who opened the door who may also have wanted to use the room. This included a thoroughly pointless breast exam. There I got asked the same information and then deep and serious but brief snippets of conversations about ... QV cream. One thing I know is that I refuse to spend my time waiting for or engaging in one more stupid conversation about mild sunburn.  Hello. Internet. Got the info already. 

I got shown something transparent in plastic? rubber? that looked like a floor mat in my brothers ute. It was pulled from a drawer,  held up briefly from the other side of the room, and put away again. I need to use whatever that thing is for something during my radiation. 

I got asked about my lymph node involvement, path results, incision area at a level no patient should be relied upon to know off the top their head. Did it matter she didn’t know and neither did I, while treatment decisions were being made? No she said it didn’t matter.  Maybe somebody will eventually look at the records I know they have on the premises because I have been there a month ago. I thought whoever these different people were, they should know my diagnosis.   But regardkess I finally had the CT scan and tattoos. I only knew about that bit from American cancer hospital you tube clips. The scan took maybe 15 - 20 mins of the 2+ hours I was there. 
The staff said I had no say in appointment times for radiation. They would let me know. These are busy centres and I can’t just think about myself. 

Nobody wrote anything down. I have just one radiation appointment booked in a week‘s time though I think I’m having 4 weeks but again not written down by anyone or confirmed. Someone rang me two weeks ago from this same place to book appointments that I thought were confirmed but nobody knew anything about that and nothing is confirmed.  I have lost money and clients stuffing around not knowing when treatment begins and when and for how long.
On my way out they did at least offer me a single page leaflet all about breast cancer. Bit late I think. I know that I have it, and have had the surgery.  Just don’t know not much about what comes next. 

This is one of Melbourne’s top private hospitals for cancer treatment. Yesterday. 

I guess this all normal. Seems disorganised to me.