Thanks for the welcome. Glad it’s not just be bothered by the ‘open’ area Beth123, thanks for that. I’m getting my rads in the Beatson in Glasgow.
Dizzybee, I have to change machines on Friday as the one I’m on is getting its MOT but was moved today too as same machine had broken down.
Yeah Beth123, I’ve been trying not to listen to folk who seem to delight in telling you that “so and so had radiotherapy and had a hell of a time with it” I have shut a few of those folk down. I mean how can they possibly think that’s helpful?!? Some folk!!!
I just wondered if anyone who *actually* knows had ever experienced the pain I was told about.
Other thing I’ve been finding is that my back is really sore each night - think from the awkward position you’re in and having to stay so still. That’s manageable though. This whole thing is like a whole other world, with its very own language and emotions. Bizarre!!
Hi all not much to report at the mo but i’ve been keeping my eye on you in the meantime ? glad it’s going as well as can be expected.
Ladybowler Glad I’m not the only one who found tat painful ( only the middle one) I nearly went through ceiling and I have quite a high pain threshold. She said that’s the worst one and so do it first as anything after that seeks better!
Ali49 I also was wondering about driving myself there and back? I’m stressing about timing afterwards and applying my gel. I’m going to try the R1 and R2 treatments and it should be put on within 20 mins I think. Logistics are a bit of a nightmare as was planning on staying at partners house but that is getting on for an hours drive away 
wait and see I suppose is the order of the day.
Just throwing it in there but has anyone heard of the oxygen therapy you can have to help with rads?
Hi Ali, welcome to the winter warmers and waiters!
So far I’ve been in position probably for about fifteen minutes at a time. The first period is taken up with them taking lots of measurements and moving me about a millimeter to the side. I haven’t found holding the position any problem, but I don’t have any back issues and I didn’t have any nodes taken, so my armpits aren’t stiff.
I’m glad not to be driving myself to rads, but that’s because it’s a bit of an awkward drive and a hassle to park. If it was easier and closer I think I would be fine. As it is, it takes us nearly an hour from leaving home to booking in at the radiotherapy desk, and part of our drive is on very rural ungritted lanes, so very icy at 7.am! But my husband is determined that his contribution to this is to do the driving so I don’t have to worry about it. Luckily he can work from home so he has employer on board, so he logs in when we get back.
I also don’t know anything about oxygen therapy or R1 and R2 treatments( if I have got that right!)
Things take a long time to reach the grockles in deepest darkest Dorset, we’ve only just got proper internet…
Morning all!
my friend Google found this on R1 & R2 treatment. It’s gel and cream and is available on prescription from NHS. I’m trying to copy the link grrrrr and can’t so I’ve typed it instead!!
could be be worth asking the question in the unit.
Not found anything on oxygen treatment as yet! Oh the joys of the Internet!
still an ouch from me so far today. I know I’m on a different machine today and it’s the one that really made me sore on Tuesday!! I know it isn’t the machine but just the treatment itself but I’m apprehensive about it today. See what happens I guess!! ?Xx
Really silly question alert!!
I’ve only had 2 sessions, day 3 this afternoon, but I felt a wee bit nauseous last night. Could that possibly be the rads or is it just that I felt nauseous anyway? I think when you just don’t know what to expect you don’t know what’s causing what.
Sorry if this is really daft!
Hi Eli
I’ve felt a bit sickly at night, just after I’ve gone to bed. I’ve put it down to the tamoxifen but perhaps it could be the rads. I can’t remember when it first happened so can’t ensure either way.
I’ve tried the aloe Vera gel yesterday and today. I’m not convinced so far - it goes in really easily but just doesnt feel as nice as the E45. I do think I’m over analysing it though but it’s the only thing I can control through all of this!!
xx
Hi All,
I am here lurking and taking in what you are all saying… will be glad when I can just get started.
I am smiling about your comments on the tattoos… As having 5, I love them and already thinking of designs to incorporate my “dots”…
Amanda
xx
Hi
im on day eight today of rads and we are just about to leave for the hour+ journey to the hospital.
I started to feel the effects on day 3 when I had this prickly feeling and then stabbing pains intermittently. Day 5 and my nipple started to get sore and had about 8 hours of pain just in one area (convinced it’s where the rads ‘go in’). Day 6&7 and it’s getting mor sore and I feel a bit swollen this morning. It’s a small price to pay in the scheme of things though and I’d happily take it and more to still be here in the future! Must say though, it doesn’t make me any less anxious about the next 13 sessions if I’m like this already!!
It’s not like this for everyone though and some seem to get through with very little effects at all. Typically that’s not me though!! Xx
Evening all.
So day 8 it is and I’m totally fed up this evening. Feeling ok in myself but oh boy I’m struggling tonight after today’s treatment.
We decided to do something different on the way home from the hospital this evening and went for a bite to eat around 4pm. Big mistake. Sitting at a table to eat food ended up being so painful ( been eating off my lap at home as its more comfy after surgery and didn’t break the habit). Good grief I think the leaning over a table to eat was just the ultimate incorrect position for my boobicle and it is screaming in protest now. We had to leave in the end as I just could take it any longer. Feel like such a wimp.
Disappointedly my Review meeting has been rescheduled for the third time to tomorrow evening. On a positive it’s meant they’ve also moved tomorrow’s session from 8am to 5pm which I’m really glad about as there’s a horrible thick pea soup fog out there already this evening.
Radiographers today are happy with everything as my skin is intact (debatable if my nipple will hold out) and all they advise is to take paracetamol.
Excuse me while I have a rant…why is the staple NHS recommendation for pain paracetamol? I take that if I have a headache. You can buy a box for about 20p in the supermarket. When I had my surgery, resulting in two 4.5 inch scars, effectively being ‘stabbed’ in the breast, all they wanted to give was paracetamol!!! I did get morphine in the end as the cheap stuff didn’t touch the pain quell surprise.
Now I’m being zapped with radiation, my nipple is blood red and a wierd shape and I have a lot of pain inside my boob and their recommendation is paracetamol!!! Lol
If it is a wonder drug that can deal with pain, no matter how extreme with the same dose as if you have a headache then I apologise.
Sorry. I had to get that off my chest!!! I know they can’t work miracles and I’m just feeling sorry for myself this evening. So guess what? I’d better go and take some pills lol
catch you all later!!! Xx
Thanks Dizzybee…9 down and 11 to go x
And Beth, one of the things the nurse suggested was paracetamol!! As if I hadn’t thought of that!
Sue x
Hi Ladies,
Have read all of your comments with interest. I have , today, become a winter warmer (love the term!) as I have rads app on 6th Dec. Have finished antibiotics for skin infection and am hoping I will now start to feel better. Still prone to tears at the least thing and very lethargic. I’m still worried that they will want to start rads before I feel up to it but I am encouraged by your time frames that it will be a while yet. Also nervous about changing to a new hospital, having got to know the BCTeam so well. Can anyone tell me: will the first appointment just be talking it through or will it be the planning with tatoos etc? Did you get any say in when treatment should start? Interesting comments about gowns and privacy - can’t wait!!!
Also I’m not sure when I will be given the Anastrozole - is anyone else taking it? When did you start and how do you feel?
Keep smiling and eating chocolate!
Jak
PS I too work in a Junior school - have been signed off from October to 31st Dec; probably going to need longer by the sound of things! I’m very lucky in that my school is so supportive x
“but sometimes I think the medical people are patronising and downright insulting”
As a health care professional myself, I so wish I could say this is misleading, but sadly I met the most arrogant Registra for my second surgery, who just assumed I would be accepting his ‘opinion’. I had to stand my ground when I was most vulnerable and insist that I didnt want his “opinion”, I want good quality evidence based research to back up what he was saying!! I use the B.R.A.I.N accronyn, Benefits, Risks, Alternatives, Intuition and do Nothing. I find it helps, but I do love to read all the research.
Sadly, not many nurses are prescribers - so it is not in their remit to offer pain relief drugs unless they know your full medical background, so in their defence, paracetamol is the safe option. But if this is not enough for you, do please see your GPs who can prescribe and offer information on others you can get over the counter.
Amanda
x
BOOSTERS?
Wondering if anyone can offer any advice. I have just been for my planning session(not the best experience of my life)where I was told I would be getting 3 weeks of radiotherapy starting on the 13th of Dec. There was a ? next to the booster week on my appointment form and when I queried it they said there was no indication that I was having it although I was told by the breast care nurse that I would need a booster week as am less than 40 years. I asked to speak to Dr but they tried and couldn’t get hold of him so was advised to query it when I return for start of rads. Just wondering if I leave it til then or contact BCN for further advice?
So I am off for rad planning appointment today. Spent last evening with my niece at hospital whilst she underwent wide excision for invasive dcis. Early diagnosis and grade 2 so hopeful it isn’t in nodes. She is my partners niece and 9 years younger than me at 47 single parent with children 3 and 10. Damn this breast cancer ! At least I know what she is feeling . X
Morning all
good luck with the planning appt today boobywoo (great name) and sorry that your niece is going though everything too. As horrible it is that you both are suffering, you will be able to support each other on this mentally challenging rollercoaster.
Trued to phone my GP this morning and she’s off for the day!!! My timing is not improving though all this that’s for sure. Will have to try and get an appt on Monday via the delightful ‘book on the day’ system that my surgery now has for all Appts. Can’t book in advance anymore!! (Try fitting that around rads!!)
anyway, hope all you lovely ladies have a good day. TFI Friday and all that stuff.
No doubt we’ll be back this evening discussing the day!
Beth xx
Beth, I don’t think the NHS is designed for people who aren’t ill to a timetable! When my wound wouldn’t heal and I was due to have it reopened in new surgery, I rang my BCN to say I was worried about the discharge and oozing, ( sorry, hope no one’s having breakfast!) She told me to get the nurse to have a look at my surgery.
When I got there, they just said sorry, she’s fully booked today. So I was there trying to explain it wouldn’t wait till Monday, explaining the problem, with the queue of people behind hearing it all, and probably most of the waiting room as well. And in the end I just had to hang around for hours waiting to see when she could squeeze me in. By the end I was in tears, you just feel they’ve abandoned you and no one wants to know.
The system is fine if your need coincides with their arrangements. I can make an appointment for 2 weeks away quite easily. But the only way to get a same day appointment is to stand at the counter as soon as the doors open, and you still have to explain why it’s urgent. If you phone you normally don’t get through until all the appointments are gone.
The system locally is barely coping with demand, you can see why people go straight to A& E.
I wish there was a way of prioritising those patients with more serious problems so we could get appointments ahead of those with more minor issues.
Morning Ladies,
Thank you Dizzy and Sue for your comments it helps so much; especially when I know I should have asked questions but once the phones put down/appointments over we all know that’s when they pop into our muzzed heads! Sue my surgery was on the 10th Nov so was 3 weeks ago recovery put back by skin infection. Is anyone from Hampshire?
Hoping all of you are coping with whatever today brings x Jak
Evening everyone
Sorry for such a long post tonight…
so what a day!! Rads number 9 under my belt and every day I learn a little more about this rollercoaster. I did get to see the Review Radiographer this evening (another lovely lady) and turns out she’s the radiotherapy equivalent of a BCN. She had a good look at everything and pulled a pained face when she saw my nipple. “Looks really sore”
“it is” I replied!! Apologies for the graphic description but it’s really dark red, crinkly, swollen and it’s surround (can’t remember its technical name) is now a funny shape and really sort of raised? BIG OUCH. And it never goes to sleep. Ever. So I have enough padded dressings to get me through the weekend and I’ll have a prescription on Monday for enough to get me through till the New Year. Also she’s given me different ones to protect the node scar by my armpit which has also started protesting this evening.
Amanda - this next bit will answer your question. They’ve said my boosters are being changed. Originally was due to have electron boosters which are the norm , and where you have to have a CT scan before hand to see whether the tumour bed position has changed after the 15 doses of rads. The rads make our boobs alter shape so they want to make sure they are still targeting the right area before the boosters begin. I’m not having that now as the electron type mentioned can’t go deep enough to get to my ‘tumour bed’ (horrible term) so I’m having a higher dose of what we’re getting now, just with a narrow beam at my target area as it needs to go in 6cm. No additional CT required - they showed me the pictures this evening. Surprised how pert my boobs were looking!!
I also asked what happens after rads. In a word…nothing!! She said that the consultant is happy with everything and is not worried about me whatsoever. Rads is a belt and braces thing and the next person who will see me is the Breast Clinic doctors in April for my first mammogram check up. They are convinced they got it all. Don’t want to see me further. I was delighted at that news but terrified too. Going to be fighting that feeling of abandonment in the new year for sure.
Also turns out I’ll have 10 years of drugs not 5. First five years on tamoxifen and then by the time I’m 50 they’ll change me to another type for a further 5 years. That’s ok I guess. Go with the flow as always.
So that’s my day. Highs and lows. Really sore this evening and I’m going to have to do what they say and stay home as much as I can with my bra off. Went for a little stroll round tesco after hospital and I couldn’t wait to get out as even walking around is uncomfortable on my boob now. Painkillers all the way for me. ?
Hope your days were a little less eventful!!! Onwards and upwards we go!!! Xx
Morning Ladies,
Thank you for your comments I know I keep saying this but it really does help! Sun is shining still haven’t the strength for a walk but will potter up the garden and pretend it’s spring.
Enjoy your weekend, keep smiling,
Jak x
Hi all wondering if you can give me a bit of advice. I have my planning appointment next Tuesday with my radiation treatment to begin the week after the 15th Dec. I have to get 20 sessions (15 +5booster). When I looked at my schedule this morning it appears that I have a session scheduled for the 23rd Dec then the next one scheduled after this due to the Xmas holidays is the 28th Dec, which means I have a 5 day break in between. I’m sure have read somewhere that you should never have more than a 4 day break in between or you basically have to start from the beginning again?? What do you guys think?? Is this OK?