At the hospital now. All the machines are running at least an hour late today. I hope I am not on LA2 which is running 2 hours and 45 minutes late.
Yesterday they were running an hour and a half late when they tried to treat me the first time. My appointment was at 12.30, but I didn’t get called in until after 2 pm. After having to come back, I finally got treated just after 4 pm. Allowing travel time, the whole process took about 4 and a half hours.
Corinna - it’s fine to cool the irradiated boob and surrounding area with cold water. I asked the radiographers about this, and they said it wouldn’t do any harm. So I have been rinsing with cold water in the shower every morning and splashing with cold water over the washbasin every evening before applying moisturiser.
At the risk of temping fate I have been OK so far, apart from a slightly sore, itchy nipple. I am dealing with this by plastering on as much aqueous cream as possible, and wearing a crop top with a strategically placed cotton wool make up pad inside, to stop my clothes from chafing.
Today’s treatment (booster 2/8) was a lot better than yesterday’s. Although it was about three quarters of an hour late, the treatment itself went without a hitch and didn’t take long because they have now got the programming sorted out. I took an Ibuprofen before, which may have helped although as I wasn’t on the machine for very long it wasn’t as uncomfortable anyway.
Hope tomorrow’s treatments go well for everyone else. I’ve got an earlier start tomorrow because they are servicing the machine so the only way I can be fitted in is with an early appointment.
Hi All
i had my first planning meeting yesterday and start rads on 19th April. I will be 8 weeks post surgery after mastectomy and DIEP reconstruction.
It’s really interesting hearing all your experiences.
my worries so far are - no deodorant or hair removal, it’s bound to be really warm for April! And also waiting times if the hospital is running late. I have getting on for an hours travel each way.
Which hospital are you all attending?
Welcome Lucy, and hope your treatment goes well. I didn’t start until just over 7 weeks after surgery (WLE and SNB). I think the guidelines are that we should start 6 - 8 weeks after surgery. You have had a bigger operation to recover from, which may be the reason for the long wait. My wait was almost certainly due to transfer to a different hospital and the availability of capacity to fit me in.
The deodorant you need is a crystalline one, such as Pitrok, which you can get from Boots - see:boots.com/pitrok-crystal-natural-deodorant-stick-100g-10086279
It is basically a lump of alum crystal rock in a plastic container. You wet it with your finger and roll or dab it on like a normal deodorant.
I am at New Cross, Wolverhampton. I am currently at the hospital waiting for treatment (8.30 appointment). The machine I am supposed to be on has broken down so the display says there is a 2 hour delay while they fix it, and another one is undergoing maintenance It probably going to be a long morning…?
Morning ladies, welcome newbies.
Number 8 yesterday, gosh it’s actually going really quickly now. Boob is doing ok, the swelling from day 2 has gone down a bit now. On antibiotics for my fingernail bed infection, where my nails have come off due to chemo ?, which may be helping with the swelling in the boob and armpit. Did a bit of gardening yesterday as it was so lovely, but definitely paying for it this morning, neck and arms are very stiff. Still at least today’s appointment isn’t until 6:45 so I’ve got time to loosen up before then.
I’m at the Royal Devon & Exeter Hospital, I feel rather lucky compared to some of you ladies as all my treatments have been in the same hospital and my traveling times are only 1/2 to 3/4 of an hour (depending on traffic) one way.
Dawn, sorry to hear about your delays with setting up for th boosters, I’m hoping mine will be ok. Some of the treatments so far have taken much longer due to extra X-rays and lining me up. The girls yesterday had such cold hands, I told them to go and hug a hot mug of something ?.
Jayne hope the treatment is going better now.
Regarding pinkness, mine is slightly pinker than the normal boob but I moisturise straight after treatment so it doesn’t seem too bad. Thought the scar around my nipple is quite sore and slightly swollen.
Hugs to all ? Xxx
Finally got treated at about 10.15 and got back home in time for lunch. Boosters are only taking 5-10 minutes to do, same as the others, now it is all set up. Appointment times are probably best regarded as aspirational at the hospital I go to, though it isn’t necessarily as bad elsewhere.
The main problem seems to be machine breakdowns. There are so many patients being treated for all kinds of cancers that they are in constant use. It is not the fault of the staff as they are doing the best they can with the resources they have got. The other day I discovered that there is a brand new machine in another room which has not yet been brought into use. Don’t know why, but suspect the staff are so overstretched they haven’t got time to spare to train them how to use it.
JoJo - glad you are still doing OK apart from the nails. I hope the antibiotics are helping. It’s weird how your nails actually get worse after chemotherapy finishes. Mine have gone dry and a bit flaky but they are hanging on and are growing normally again. I keep clipping them as short as possible to cut off the grotty bits. I also moisturise in the changing cubicle immediately after being zapped, which helps reduce the pinkness. I think rinsing the irradiated boob in cold water also helps. My travelling times to hospital are similar to yours, so I shouldn’t complain - some of the people I have met in the waiting area have travelled a lot further. This morning one man said it had taken him 2 hours to get there because of the traffic. This is no joke when you then have to wait another 2 hours to be treated, then have to drive all the way home again.
Hi ladies,
Thanks for the messages of support.
yesterday was much better, only took 35 minutes and today was even quicker, although one of the girls today shouted at me to relax! Not conducive to making you relax!!! I did shout back that I was trying, and the other girl apologised!
I have quite a pink boob already, after just 4 sessions. I keep slathering on the aloe Vera gel or moisturiser, and the only bit that’s sore is my nipple, and that’s not too bad at the moment. I’m wearing t shirt bras, which are nice and soft.
has anybody else had mouth problems? I’ve got a really sore mouth and throat and not sure whether it’s to do with the treatment, or whether I’m getting a bug of some kind. My taste buds seem a bit off too, everything is really bland and tasteless.
Other than that I am just very tired. Part of that’s travelling over an hour each way I expect. I’m trying to drink as much water as possible in the hope that helps.
I’m glad we’re at different hospitals Dawn, or I would have been panicking that it was me holding you up the other day!! ? I felt really bad about the people who had to wait so long because mine took ages.
Xxxx
Lucy, I had my surgery on 18 January and have only started rads this week. My Onchologist and surgeon said as long as it is started within 12 weeks of surgery, there’s no problem.
i had to wait for swelling to go down, in the hope I wouldn’t change shape after set up.
I didn’t ask about hair removing! Didn’t occur to me, I must be more European than I thought I was!! I did ask about deodorant and was told that as long as I used a simple roll on, not spray, and only right in my armpit, it would be ok.
xxxxx
Hi. I’m new to the forum. Had a WLE and lymph node removal just over 3 weeks ago for a DCIS. I don’t need chemo but am waiting for 15 sessions of radiotherapy. I have my planning meeting next Wednesday and think they will start soon after that. I started on Anastrozole last night which got me down a little at the thought but just got on with it. I read on the forum a couple of days ago about Replens and had got some in just in case. I’m glad I did as the dryness kicked in already and I knew exactly what to do.
My main worries about radiotherapy are that I have a frozen shoulder on that side (right). I have told them and they looked a bit appalled so I’m crossing everything we’ll be able to find a position that works. I definitely cannot get into the standard position at all. The other worry I have is that my nipple is already sore, has been since my surgery off and on. It feels like there is an electric current going through it most of the time and I’m worried it will get worse with the radiotherapy. I keep telling myself things are going to get worse before they get better and that they will definitely get better. It’s so odd having to continually present yourself at the hospital in the knowledge that they are going to be doing something pretty unpleasant to you again, or give you some unpleasant drugs to take away. What a weird thing this all is. I still can’t get my head round it sometimes.
Thanks to to everyone who posts though. I’ve already found really helpful suggestions here.
Hello
I am also new to this forum. Have just completed day 5 of radiotherapy of 20 sessions and so far so good. I am feeling tired at night but apart from a slightly hot boob can’t complain!
Just to put your mind at rest re frozen shoulder, I broke my collarbone a week before start of radio & was told they wouldn’t go ahead if I couldn’t get my arm into position. I ended up taking very strong painkillers & had to have my arm positioned very slowly. I did grit my teeth but it has got better as the week went on. I hope things work out with your shoulder.
My radiotherapy is not going ahead over Easter & the bank holiday in may so a four day then three day break. Is this the case for anyone else? I have read that it is not advised to have breaks in the treatment however they told me that as I’m low risk it will be fine? Anyone else stopping for Easter?
Thanks, Fiona
Hello
I have done 5 out of 20 sessions and so far so good. Other than tiredness & a hot boob I can’t complain. Does anyone else have a break in their radio schedule over Easter? I am a little worried as I have read that there is a higher chance of reoccurrence if days are missed but I have been told as I’m ‘low risk’ it should be fine.
Rooty - I broke my collarbone the week before radio & was told it couldn’t go ahead if I didn’t get my arm up. I ended up taking very strong painkillers for the first few days & had to have my arm very slowly put up for me. Got through it with a bit of teeth gritting. I hope you manage with your shoulder. Hopefully they will make allowances in the planning session.
Corrina and Rooty
I started my rads treatment on 20 Dec and had two spells where I had a four day and three day break. (xmas and new year) When I expressed my concern about this I was told that because my cancer was so low grade it would not make any difference so I was not to worry.
Hope everyone is having a lovely weekend break from rads.
Helena xxx
Hello everyone, sorry for not posting over the weekend. I started writing messages several times but each time I either got interrupted or lost the message due to authentication problems. I have just had 20/23 without too much waiting today - only 3 more to go!
Hope you all managed to make the most of the sunshine over the weekend. I’m sure there will be many more days like this once we have all finished and are feeling better. We went to Shugborough yesterday to see what it is like now NT have taken over managing it. We walked round the gardens and grounds, but a walk I would normally find easy wore me out!
Corinna - glad you had a good day with your daughter yesterday, and you were probably wise not to risk overdoing things. Thanks for the brilliant tip about wearing a bra over a cotton vest. I tried this over the weekend woth a crop top, and it worked really well. Now my nipple is starting to get a bit sore I also find cotton wool make up pads help, and they will stay put under a bra or crop top.
Jayne - hope you enjoyed the wedding and the bra was not too sore. I found wearing a vest underneath like Corinna suggested is better than stuffing a cotton hanky down it because it stays in place. If you are still sore I hope they will give you something for it today to stop it getting worse.
Pippa - it’s good that you are seeing a nurse to check your skin this week. I am reliant on the radiographers, although they are pretty good and check my skin every day. I have got a follow up appointment as well, but it isn’t until June.
JoJo - how are you getting on? You must be nearly finished now, hope everything is still OK.
Rooty - hope your planning session goes well, and they are able to find a reasonably comfortable position.
FiT - I take off my hat (and wig) to you for coping with radiotherapy in your situation, and hope the painkillers are helping.
Hi first session for me tomorrow. Apprehensive of the effects in a few more weeks yet. Especially skin reactions. Will check through forum and see what you are all recommending for skin protection x
Evening Ladies,
Just had my 10th session so halfway through now. Skin is doing ok, I moisturise when I’m zapped, I’ve always had sensitive skin so apparently all my moisturisers are ok, at the moment it’s doublebase gel.
Hope you all managed to get out and about this weekend and enjoy the weather.
Snail hope the first session goes ok, the firsts one takes much longer as they will take x-rays to make sure everything is set up in the right position. One my first one the machine had a technical issue so was a little longer than planned.
Dawn, only 3 to go and it will be time for those bells ?.
Hugs to all xxx
I have e45 at the ready but was told not to use for 3 hours before or after. What elae are people using? Has anyone tried frozen cabbage leaves fornhor boobs?
21 today, 21 today (zaps not years that is)!
Snail - hope you get on OK today with your first treatment. The first few will take a bit longer because of them taking images, but the quicker you can get settled into position the sooner it is over. You shouldn’t get any reaction for a few days. Keep hydrated, keep moisturising, tell the radiographers at the first sign of any problems, and you should be fine.
Can’t say I have tried frozen cabbage leaves, but I do rinse the zapped area in cold water twice a day. The only moisturiser I have used, as instructed by the radiographers, is aqueous cream. Whatever you use it must be fragrance free. I also use Simple soap for washing and a Pitrok crystalline deodorant (after applying moisturiser).
The aqueous cream has been OK so far. I apply it very generously (already got through 2 tubs!) 4 times a day: in the morning after showering, immediately after treatment, around lunchtime or teatime (depending on when treatment is), and last thing at night.
Hi all I’m new to this forum. I start tomorrow. I have R1 and R2 creams. Has anyone else used these? My GP said aqueous cream is too thin though it’s good for washing with. The R1 says to use as soon as possible after treatment and leave in a thick layer for 20 minutes. I won’t be able to put it on till I get home so by then it will be an hour or more afterwards. Hoping that’s still ok. As I’ve seen others mention, I have a break for Easter after doing only two sessions and I’m not all that happy about it. I wasn’t low grade and I wish they were starting me next week instead. I am going to mention it again tomorrow at my information session. I will have a read through the forum to see other experiences before asking any more questions.
Jacquie
Pippa - thanks, yes I have only 2 more to go now. It’s been a long haul! It must be reassuring to have the extra support from the nurse, because the radiographers don’t always have the time to talk to you much.
Jacquie - good luck for tomorrow. As has been mentioned, it may take a bit longer than usual because they take images for reference the first few times. It can’t be too much of a problem having a 4 day break over Easter otherwise they wouldn’t do it but it is certainly worth mentioning tomorrow. They aim to start radiotherapy as soon as possible blafter surgery or chemotherapy, which may be why they want to start now, or it may be that this is the only time they can fit you in.
At my hospital they insist on aqueous cream and nothing else, so I have only used that. I have also got Intrasite and Instillagel in reserve incase any serious problems develop, but have not had to use them yet.
Aqueous cream is quite thin so you have to really plaster it on, and it also takes ages to rub into your skin. You also can’t put it onto your skin less than 2 hours before treatment, so if you have a very early appointment this can be an issue, although you can use it straight after. Other than these minor things, I have had no problems with it. It cools the skin and stops any soreness or irritation in its tracks. I have some pinkness and occasional itching but no burns, rashes or skin breakdown so far, after 21 treatments (shouldn’t speak too soon!).
I should mention that I have been moisturising with E45 all through chemotherapy and ever since, including following surgery, which has probably helped. My boosters are also to the top half of the breast (where the tumour was), rather than underneath the breast, into the armpit or to the side nearest the armpit where the scar is. This has probably reduced the risk of bad skin reactions.
I hope you don’t mind … I had my radiotherapy from February through until 16 March having had 19 sessions … on 18 March I went on holiday to Dominican Republic… I have used E45 throughout (covered area in sun) … and all is well … hope his helps x