Hi. I thought I would come on her to look for some help. I was diagnosed in March and have had my surgery and started on the Tamoxifen two and a half weeks ago ( some SEs - but trying to persuade myself they are already lessening ) .I have until recently been quite calm about everything - not happy but dealing with it - . Sadly cancer is not new to me - I lost my brother to cancer 22 years ago ( when he was just 32 ) and my mum was diagnosed with bc 6 months before me. For some reason I have got myself really panicy about having the radiotherapy ( which I think is going to start on the 29th - 15 sessions ) . I am not worried it is going to hurt - it is just the panicy fear of being left alone and having to keep still . I was shaking and rapid breathing during the CT planning session. I did get through it - of course - but would prefer not to feel like that 15 times over ! I know it is in my head and wussy but as the lovely radiographer said to me - if it is real to me it matters. So did anyone else feel like this and if so are there any tips to help ? Also can someone tell me what actually happens and exactly ( ish ) how long they leave you alone for. Thanks for reading this and for any help you can give this wuss !
Bump
Hi walkabout…you are not a wuss! As the radiographer says, if it’s real for you then it matters! I had 23 rads sessions last July/ August and was very concerned about having to lie still for ages as I am a fidget! The whole process just takes a few minutes, the longest part is them measuring, shifting you about to get you in the right place for the treatment. Don’t know if yours will have, but in my hospital they have pictures beamed onto the ceiling…althouh tbh looking at cherry blossom did get a tad tedious…and they played some lovely albeit tinny music! They were only out of the room for a few minutes and by the time the machine has moved, whirred, clicked it seems really quick and they’re back in again. Be reassured that they can see you at all times and can stop if they need to.
4 weeks from now it will all be over! Most importantly follow advice about moisurising, letting the air get to your skin etc.
You will be OK 
x
Sorry Walkabout, only just seen this.
I felt very panicky about radiotherapy. Not even sure what it was exactly that made me feel that way as - as you say - it doesn’t hurt and I didn’t feel a thing. I guess the contraindications didnt help me to view it positively (although I have had no adverse a effects from it at all) and the idea of killing cells on purpose feels wrong.
It is, though, a really valuable tool in our armoury. I was told by my onc that it is viewed by some as being a bit old fashioned but that it is one of, if to the most, powerful tool in our armoury. Normal cells can regenerate, cancer cells can’t.
The actual process is over in seconds / Minutes. You go and lie down, they manoeuvre you into exactly the right place and then go out of the room. I does a set of laser lines across the ceiling - mine were red, and felt a bit like being n a Star Wars Movie. Then the staff leave the room for a couple of minutes while it does its stuff. It always seemed no time at all til they were back. The manoeuvring took longer than the treatment.
I cried buckets after the first one. No idea why, maybe just the stress of it all, but also my mum had bc so I think it brought it all home to me, more somehow that the surgery had. I have had other surgeries, I had never been in an oncology unit. I rang a few people who were ahead of me in treatment and they all said variations on the same thing.
Try to tune out and imagine yourself lying on a beach or somewhere else, or else alternatively, think of it as zapping the b*stard cancer cells, and they won’t be able, to recover. So I lay there thinking “take that you little b*ggers” for 20 sessions and never felt bad about it at all other than that first time.
i became a little pink, as though I had sunburn by the end, but no real problems and it turned into a somewhat odd looking tanned square after a couple of weeks. The staff were also lovely and it became quite a routine. We would chat and continue conversations from one day to the next and looking back it flew past. It was exactly this point two years ago.
It is all horrible at the time, but I have been NED, no evidence of disease, for two years now and it does all seem like a surreal memory.
Hang on in, and if there is anything I can do to help just say
Sue (MG) x
hi Walkabout,
first of all you’re not a was. We are all worried and concerned about new situations especially the ones we find ourselves in now. I don’t know which hospital you’ll be having your rads at but I can tell you what it was like for me at St James Leeds. The first time I went, after the planning session, I had to arrive half an hour before my appointment and was seen by one of the radiographers who explained what would happen, talked about skin care gave me a tube of aqueous creamand and a leaflet about skin care during radiotherapy. When I was called for treatment the radiographer took me into a changing room where I was asked to take off my top half and put on a very fetching hospital gown. She came back for me and took me to the enormous room with the linac machine. I was asked to lie on the bench and they positioned me/ lined me up using the tattoos done on the planning visit. It’ s not at all uncomfortable and you don’t feel anything during the treatment itself. Once they were happy that I was in the correct position they went out of the room and the machine moved to it’s first position, made a slight whirring noise and a buzz - first zap over with! It was done in a couple of minutes and you don’t feel a thing. The radiographer then came back in repositioned me slightly on the bench, moved the bench either up or down (can’t remember which) went out of the room and the machine moved to it’s second position, same noises, once again over in a couple of minutes - and that’s it! You get off the bench, get changed and go home. They had the radio on and a few women on this site have said they made a list over the 15 sessions of the songs they had heard. Each time I went I was asked if I was okay, any skin changes etc. the last session I was given a leaflet on how to look after my skin post radiotherapy.
The staff were fantastic, really friendly,caring, helpful and very chatty throughout. They made me feel totally relaxed about the whole experience.
I finished my rads early April and had only mild pinkness and some itchiness for a few days after I finished, this was helped by keeping my aqueous cream in the fridge and slapping it on 4-5 times a day, going topless whenever possible and taking piriton tablets for 3days.
Hopefully this has helped to allay some of your fears, do let them know if anything is troubling you or if you have any skin changes, they will be able to help.
All the best for your rads, Pat
Sorry, Walkabout, that should say not a wuss, blooming i-pad changing my words again!
Take care Pat.
Hi Walkabout, I was writing a post to you earlier when my IPad crashed and I lost it all! in the meantime, you have hard some great help from Mary Grace and Maryland. I am on session 13 tomorrow and agree with what has already been said. The whole thing lasts approx 10 mins including changing. There is as much time getting into position as there is on your own with the machines whirring. At all times the Radio-ettes are watching you so you are never really on your own. Years ago when it was more acceptable than now, I used to have the occasional sunbed before a holiday. My daughter now refers to these sessions as the Sci-Fi sunbeds, so I plug in my music and drift into another world while it’s all going on, much as I did years ago when I was actually tanning rather than nuking the little b* ggers! my best tip is, if you are able at your hospital, to take your own music. It helps me feel more in control of the space and the whole procedure and every day I plan a different little soundtrack!
My skin is doing fine, slightly uncomfortable at the end of the day but nothing dreadful. I go bra less most of the time now as it is more cooling and comfortable. Also now I am halfway the tiredness is becoming more of an issue. By the end of last week, I did give in and creep under the duvet for a little nap, so be kind to yourself throughout and don’t make any plans that you might not feel up to…
lots of hugs as you go through the next few weeks
x
Hi Walkabout,
I am still on chemo and haven’t started rads yet, but have no fear of it at all because of my experience with my mum.
She was 84 years old, and following a mastectomy she had 15 sessions of rads and sailed through it all. No pain, no problems, no side effects. I drove her to each session, and when she was called in I got a cup of tea but she was always out and ready for home long before I had finished it. The worst part was the travelling to and from every day. That was tiring. That was 12 years ago.
Good luck! xxx
Hi I asked the staff to dim the lights and play me music. Lovely relaxation time pretend your on a beach with a cocktail. Time flies by and your out of there!
Maryland , Marygrace , Trisha51, Southcoastbeachgirl, Lola 65 and Carrie 55 - thank you all so much for your lovely,comforting , supportive and helpful replies. I will definately see if I can take my own music in as I think that might help. I could ask about taking a cocktail in too - that might help the fear ! - but think it might just have to be the visulisation for the cocktail.
Margrace what you said about the fact that the radiotherapy is delivered in the oncology department hit a chord with me. My Oh said I was subdued after my first visit there to see the oncologist ( even though the meeting had gone well ) . I think it just hits you in a way that visits to the breast clinic don’t that you have cancer. I think as well for me it is the link to my brother - his cancer was in the brain so all his treatment was radiotherapy.
I am struck by the number of times I read a post here and a lady expresses exactly or very nearly an emotion or worry I have had.I wonder how many doctors look at this site ? It would give them such a wonderful insight into how people really feel and react and what worries them.
Trisha’s mention of hospital gowns reminded me of my list of possible causes to take up from my experiences so far :
- Stella mcCartney to design some hospital gowns for the NHS ? - they are still as dreadful and for some humiliating as they were on my first hospital visit 25 years ago.
- To tackle the insurance companies and their attitude to a diagnosis of cancer .
Still it is not all bad - I had a lovely walk on dartmoor this afternoon with my OH and springerdoodle 7 month old puppy - and the sun shone.
Thanks again everyone - I will try very hard to think more positively - if not I will have to change my name on this site to THE Wuss !!
XX
Hi
Agree with everything everyone else has said. It’s the fear of the unknown and believe me the unknown in this case is nothing to worry about. My clinic tends to always run late, but there is a nice coffee shop, TV, magazines and I take my own book. I have also met some lovely ladies while I have been attending (I only have 2 sessions left) and also had some lovely complementary treatments which are offered by Macmillan at my hospital.
The worst part of the treatment for me is as soon as the radiologists leave the room and I have to stay absolutely still I develop a terrible itch somewhere on my body!! Nose, ears, foot, legs…everyday a different one!!
Good luck, you will be just fine.
One other thing I didn’t do the hospital gown thing I got undressed and left track suit top on and went in like that and took it off and also took warm top or small blanket in to cover me up cos got cold on the table. Saved hospital washing and felt more normal not bothering with a gown.
Oh and one more thing while on the subject use 100% aloe Vera gel throughout and you won’t burn and its very soothing but must be 100% gel.
Thought I would just update as much for the benefit of anybody else worrying about their radiotherapy sessions. I have now had 3 of my 15 sessions and survived ! I did as expected feel very jittery on day one but the radiographers were very kind . We don’t get any music or moving pictures so my coping strategy is eyes closed and counting backwards . If anyone else is worrying ( and from one who has and does still feel wobbly ) I can confirm
- it is completely painless
- the only time the machine really comes anywhere close is when they are getting you into position - and then it is close to your chest area
- day one is the longest but not that long ( and most of the time is when they are positioning you ). Days 2 and 3 were shorter and I have been told it will be shorter again next week.It is a bit weird being left alone topless in a lead lined room with a linac machine - but that is all it is - in my place the staff cannot hear you but they can see you and the signal if you need help is a wave .
- you are lying down so no matter how wobbly you feel you are not going anywhere !
- from what I have been told the anxiety is common and yes they do get people leaping off the table - so if anyone is feeling like it you are not alone. We all find different things difficult .
- i have used rescue remedy - no idea if it works - but i use it when flying ( I hate that too ! )
No redness or itching yet . I am feeling more weary than I usually do but seems a bit early for that to have kicked in so it could be unrelated.
Thank you to everyone who replied.
I’m also waiting to start radio and am feeling a bit wobbly now about it, although better now I’ve read the above. I’ve my first consultation in the 10/6 and then I’m hopeful it he planning will kick off as I just want to get it done and dusted. Feels worse just waiting as my op was on 30/4 and all healing well need the next part of my journey to begin!!
Hi walkabout. I start radiotherapy on 17th. And I am worried too. No so much about the 15 sessions, am much more worried about the long term effects. They told me there was. 5% chance of permanent damage to lung or heart. Which seems pretty high odds to me.
I already had chemo, then radical not skin sparing MX and ANC. To me there doesn’t seem much flesh left there to zap. So surely more risk of hitting bones or other bits.
Had my tattoos done last week. Going to turn them into paw prints when this is over. Been advised to go in wearing a big scarf to hang over chest and to whip it off when needed. Much prettier than their hospital gowns.
the planning scan was overy much quicker than I expected. And the rads will take just minutes. Take the time to plan a big holiday for when all of this is over.
maybe us June Rad ladies could keep in touch and support each other through this?
Catzooo, the rads treatment itself is nothing to worry about - just wearisome having to go back and fore to the hospital every day!
I finished 15 rads 2 weeks agoand like you had a m/x +ANC. The thing you may notice most is a hardening of the chest area again, due to the radiotherapy stopping the healing process temporarily. Also a worsening of any arm tightness due to ANC. My arm has been more tight around the elbow and inner forearm. Keep doing arm exercises, but gently. I have just made an appointment for a few weeks time to have my arm checked, and the BC nurse is sending me some specific exercise info. and manual massage techniques - to keep away any chance of lymphoedema.
Skin redness minimal - I used Xclair cream, which I asked for. You can get GP to prescribe it if hospital hasn’t got any.
Jen.
Hi Catzoo and Twizzle . I am also just about to start radiotherapy .Planning sesion on 10th, same as you Twizzle [had my op on 23rd April] and then 25 sessions ,5days x 5weeks. Downside is I have an 80mile round trip each day so that adds up to a lot of miles. Do you know how many you are having Twizzle? Great idea Catzoo about keeping in touch June rad ladies so we can support each other through any problems. Is it too much to hope we don’t have any?Good luck both of you.
Judith
Hi Catzoo and Twizzle . I am also just about to start radiotherapy .Planning sesion on 10th, same as you Twizzle [had my op on 23rd April] and then 25 sessions ,5days x 5weeks. Downside is I have an 80mile round trip each day so that adds up to a lot of miles. Do you know how many you are having Twizzle? Great idea Catzoo about keeping in touch June rad ladies so we can support each other through any problems. Is it too much to hope we don’t have any?Good luck both of you.
Judith
Hello Walkabout, I was terrified of the idea of radiotherapy and having to keep still. I can honestly say that by the end missed going in for the treatments. it sounds silly now but it felt like something was being done to blast any remaining little wotsits out to infinity! I found that closing my eyes and counting fairly slowly, I rarely got above 15 before they had finished that blast and were back in to reposition. The most surreal experience was on Christmas Eve, my daughtre’s 21st birthday, as they went out and the alarm went off, the Hallelulah Chorus started playing!! The radiographers were wearing reindeer antlers, it was truly weird and I will never forget that experience! The staff were totally amazing and there was a kind of camaraderie with the patients and what I called the “waiters” the family and friends who were there to give support. I drove myself most of the time as it wasn’t too far and had a nice rest afterwards followed by a walk and generally took that time to really take care of myself. Hope it continues to go well for you.x