Ive finished my Rads now but still got to use the cream for a further 3 weeks before going on to use my usual creams.
The nurse also gave me a tube of gel called Flaminal Hydro to put on my sore bits and itchy bits if I get them or any rashes.
Snail and Jacquie - pink and a bit hot at this stage doesn’t necessarily mean you will have skin breakdown, but they will be keeping an eye on it in case. Try cold water on the treated area in the meantime - I found this helped to cool it down and reduced the pinkness. If it starts to get sore, tell the radiographers immediately so they can refer you to a skin specialist or give you some gel to put on it before anything serious develops. Good luck with the rest of your treatment and hope your skin continues to hold up.
Kaspar - good luck with your first one today. My first session took about 10-15 minutes because they had to establish the correct position, and they also took reference pictures before they treated. The actual treatment is only about 5 minutes, so once they know how to position you, it will be quicker. When you are in position you have to keep very still. You can breathe deeply and swallow if you need to, but that’s about it. Otherwise, keep well hydrated, and keep applying moisturiser several times a day - take some with you to put on after treatment. If you are having your radiotherapy at New Cross (Wolverhampton) there’s no chance of working through it unless they can give you very early morning or late evening appointments. The machines keep breaking down so mid morning and afternoon appointments are often running way behind schedule - sometimes by as much as 2 hours. There’s no way I could have worked through it with the random/ frequently late appointments I was given, even if OH had let me go back to work before I started (they wouldn’t in case of fatigue).
Alleck - I’m surprised they haven’t already advised you what to use - perhaps they will provide it. The main thing is that you must use perfume free products on your skin. I used aqueous cream, Simple soap and a natural crystalline deodorant (Pitrok) throughout, nothing else, as that’s what I was told to use. When I mentioned other creams the radiographers made funny faces, so I have stuck with the aqueous cream. I finished just before Easter, and was advised to continue to use the same products for the next 6 weeks. I have got through 2 tubs of aqueous cream so far, as I have been really plastering it on 4 times a day! It has worked well though. I had 23 rads in total (= 15 whole breast + 8 boosters to tumour bed). There has been some general redness and itching around the nipple and booster area, but my skin has held up surprisingly well otherwise. I have a slightly crusty nipple but the only red, itchy patch now is the booster area. I was prescribed Intrasite (Hydragel) and Instillagel in case of skin breakdown during rads (you can’t use aqueous cream on broken skin) and Flamazine to use on burns afterwards. I haven’t needed them up to now but I am still hanging onto them in case anything develops over the next few weeks. Will be seeing BCN today and will ask her to check it over.
Hope this helps those of you still being zapped or about to be.
Thank you Ladies for all your replies and your helpful tips on what to use/not to use. Hopefully everything will go well and might even get more information when I go tomorrow. Once again, I appreciate that you took the time to reply. Kind Regards Alison xx
Next step radiotherapy, have to wait for a letter or phone call for 1st appointment to do tattoos etc. We have a holiday booked for Spain on 16th June hoping we will not have to cancel but oncologist suggested we might have to : (
Evening Ladies, hope everyone is ok.
Had my last treatment this afternoon, feels strange to be finished, handed my gown back in and said goodbye to the team ? Who have all been lovely.
In celebration I’ve just booked a holiday to Lanzarote in a 3 weeks!! A nice relaxing one in the warm, which seems fitting as it snowed whilst booking it.
Sending hugs to you all, th end is in sight.
Xx
Congratulations JoJo, you made it! Holiday in 3 weeks sounds good, and gives you enough time to recover.
Pippa I’ve got the same, a red patch with a bit of a rash where the boosters were, plus a slightly crusty nipple. The red patch isn’t sore but it itches a bit from time to time. I keep slapping the aqueous cream on and I think it is starting to fade now.
We have also booked a week’s holiday in Cornwall starting the end of next week. I probably won’t need Factor 50 if the weather is anything like today (I think we’ve had a bit of everything here, sunshine, rain, sleet and snow!).
I am expecting to return to work at last when we get back. I have a review appointment with OH next Tuesday, and can see no reason why they won’t agree I am fit to go back this time. But it’s going to be quite a shock after so long!
Lynda - the waiting for radiotherapy is frustrating, mine was supposed to start about 4 weeks after surgery but it didn’t actually start until 7 weeks after. How long ago did you book your holiday? If it was a long time ago and before you knew you needed radiotherapy, you may be able to claim at least some of the money back through the insurance.
Hi All
Well done Jo Jo for finishing your Rads!!and great you have a holiday booked.
Im a bit reluctant to think about booking a hol yet as still feeling very tired at times and sometimes hard work packing and stuff. also worry about having to lift my case as now I have a poorly arm which isnt very strong.Also travel insurance will be very expensive now I guess with having had cancer. Anyway Im not back to work yet so couldnt book hol anyway.I need to get a new passport aswell… ha ha…so may things to think of ! too much like hardwork for me going on holiday. Just going to concentrate on building my strength back up for going back to work as I feel Im still a bit fragile both physically and emotionally.
Went to the maggies centre today which is a charity who support people with cancer and I did some gentle yoga ,so thats a start , and plan to go to their Breast cancer support group tomorrow . lm also seeing a psychologist who is giving me some support. Think all this help will be good in building up my confidence to go back to work as presently dont feel I couldnt manage due to my tiredness and also worrry about my stress levels. Hopefully I wont be so tired soon. I started on some Letrozole 6 weeks ago and wandering if that is contributing to me feeling so tired. But Im lucky to have finshed my Rads and that I am getting some good support. so need to count my blessings xx
Morning Ladies,
Thank you for all you kind remarks on finishing treatments, yay 7 months and finally there, just going to take it easy for the next few weeks before returning to work. Hence the holiday. Insurance wasn’t too bad, I got a few quotes through “AllClear” but then have going through the PostOffice which a friend whose husband is terminal used. I was expecting it to be very expensive but it wasn’t. The holiday is both a celebration of finishing active treatment, and payback as we were going to go last October but I was diagnosed in September and has been on hold.
Corrina, sorry to hear how you are feeling. I went to the support groups at my local hospital and found them very useful, it just nice to be with other women who know exactly how you feel. Just like on here but with real hugs. I’ve also been very lucky with my friends and colleagues who have been very supportive. This is a very long journey we have had plunged upon us, where the world seems a very distance place. I’ve always said that those Macmillan adverts sums this journey up, with the patient stood in their gown in an empty world. Sending you ? hugs. Xx
Jaynes, last one today ? Hope you get out to celebrate xx
Lynda and Alieck, hope the first one goes ok, it gets easier with each one xx
OldDawn, have a lovely break in Cornwall. If you fancy stopping off in Exeter give me a shout. Xx
Pippa, enjoy your holiday. Xx
Snail, how’s it going? Xx
lots of love to anyone I’ve forgotten xxx
Forgot to mention skin. Mine is pinkish, well definitely darker than the other one. The scar in my armpit is the worse and needs lots of cream, and the nipple is quite sore now too. I’ve been using Doublebase gel prescribed by my GP, I used to use it for eczema. Which has worked fine up until the last few days. I now have a rash over my chest, just above my cleavage, which the radiographer said was not them as goes top of both breasts! So now I’m trying aqueous cream to see if that helps.
Oddly my team never mentioned creams, just to use anything non-scented.
Xx Jo
Jayne - nearly there now! Glad your skin is holding up well with the E45, and hope it stays that way afterwards. It is a long slog this treatment. I started on 1 September (chemotherapy) and finished on
My skin was fine at the end and they were surprised it had held up so well after 23. It was just a bit red where the booster was and occasionally itchy but otherwise OK. I have carried on applying aqueous cream, but the booster patch has now developed an itchy rash. I think it could be an allergic reaction to the cream, so I put a bit of Hydrocortisone on it this morning and it seems a bit better.
I think I will start using the E45 Intense Recovery instead of aqueous cream. I’ll be going to the chemists this afternoon to pick up my first repeat prescription of Letrozole and Adcal so I’ll see if they have got some.
You are so right about this treatment being a slog for some of us. I started on 1 September (chemotherapy), had surgery on 19 January, and finished on 13 April (radiotherapy) so it has taken me 7 and a half months to get there!
Hi day off for me today while machine is being serviced. I like the 4 day treatment weeks as my skin is definately sensitive. 4 days next week too but the booster week is a 5 day one. I have a review tomorrow after treatment. Anyone know what to expect there?
Alison - I used aqueous cream throughout, nothing else, but it doesn’t suit everyone, and I am now getting a rash from it, so I wouldn’t recommend unless you are OK with it. It’s also difficult to rub in and to transport because it comes in massive tubs.
If your hospital is happy for you to use E45, stick with that. At least you can take that to the hospital easily and slap some on after your treatment. If any problems do develop despite the cream (e.g. soreness, itching, burning) tell the radiographers straight away. They should be able to give you something else to help, or refer you to a nurse who can.
As Jayne says, the travelling to and fro and the hanging around waiting for treatment when you get there can wear you down. You will start to get tired by the end, so rest as much as you can when you are at home, and don’t forget to drink enough, as this helps.
Also don’t be tempted to book a holiday immediately after the treatment is due to end, because you don’t know how you will be. The end date can also change if there are delays because of machine breakdown/ servicing.
Snail - don’t know about review, sorry, I never had one. I guess they will be looking at how your skin is. My lot checked daily before or after treatment. I had rads 5 days a week, except for one week when I only had 4 because the machine was being serviced.
Re: boosters, the first session will probably take longer because they have to get the positioning sorted out. I think the tolerances are less as well with so they have to get you absolutely right which may take a bit longer. They will also take images for reference like they did the first week.
My first booster took longer than usual because adjustments had to be made - the square contraption that fits onto the machine to direct the boosters was too close, almost touching my chest! I had to go away while they re-programmed it and come back again for the treatment.
Thanks Pippa, counting down the hours!
Jo, interesting about insurance. I was going to ask about that. Last June we booked Dinsey World, Florida, for February, and I took our a yearly insurance with Direct Line. We then had to postpone because of my diagnosis and will be going this July. That means my ins will have expired and I got the idea, from talking to Direct Line, when I had to claim for the additional cost of the holiday, that they might not insure me, or if they do it will be mega expensive if I don’t exclude any complication that might be related to the bc or treatment!
Not sue I’m prepared to take that risk, so will probably need to find an alternative insurance company. Will deffo look at Post Office. So thanks for that.
Dawn, your seven months ordeal, including chemo, makes me feel like a fraud and a baby! I should be grateful that I didn’t have to have chemo, and I really am, but am angry with myself for being weak and finding the whole process difficult and exhausting.
Then I remember I had a major gynae operation in October, breast and lymph node surgery in January, have had shingles in my surgery site under my arm, had to wait ages for rads because of shingles and swelling and have had such issues with rads set up, and the repercussions from that, that I should give myself a break! Lol!
Why are are we so hard on ourselves? If anybody else told me that they had gone trough what I have, I wouldn’t tell them that they should be fine with it, and just grateful it wasn’t worse! Why do I not apply that to myself?!
Snail - I had a review with the Macmillan Radiographer last week. It was fine and quite helpful and reassuring. She checked my skin. Talked about what side effects I have, what products are good for certain things. We went over drugs and what to expect and I had the opportunity to ask questions or raise any concerns. Nothing to worry about and as I said, I found it quite reassuring.
Right, off to get myself ready for my 15th radiotherapy session! Big hugs everybody. Be well! Xxxx
First Radiotherapy today. Was supposed to have an initial meeting to go through things at 9.45 and radiotherapy at 10.15. One machine down and shortage of staff meant that I did not have the meeting, just given a few pages on what to do/not to do and a delayed start. Within an hour my bust felt warm and sore/tingly in two spots. I thought most people mentioned that this happens further down the line. Is this normal? Thanks again for all your support and replies. Alison xx
Jayne - you are not a fraud or a baby, there is absolutely no need to beat yourself up about anything. You are just reacting to the whole BC diagnosis/ treatment thing like we all do.
Every BC is different, so the treatment plan you are given is tailored to you. Some need chemo, others don’t, some don’t need radiotherapy, some have to have mx, others don’t. It’s just the luck of the draw. Doesn’t stop us complaining about our lot, of course!
And as you have rightly pointed out, you have already been through other things that most of the rest of us haven’t had to endure, so it’s hardly surprising you feel hard done by when you have been through the mill. It is the last rad tonight so the ordeal will soon be over - then LadyB can ring the bells for you!
Alison - oh no, they have clapped out machines at your hospital too (thought it was just where I went).
It is unusual to have a reaction straight away. Have a word with them tomorrow about it. Also take some cream with you to put on immediately after treatment, and a bottle of water to sip while you are waiting - this should help. Another thing you can try is rinsing the treated area in cold water in the shower to cool it down.
I hope your employer is flexible, because you may have long waits on other occasions when the machines break down. I’m glad they wouldn’t let me go back to work before radiotherapy, because I don’t see how I could have done it with random/ frequently delayed appointments. I can’t really fault the radiographers, they were doing a brilliant job in difficult circumstances, and it wasn’t their fault the machines kept breaking down.
I hope tomorrow is better and that the machines don’t break down again.
Evening everybody.
Ive just started to catch up on the posts here. I have completed day 6 of 15 today. I think my boob is slightly warmer than the other but that’s the only side effect I’ve had.
At my first session I told the radiographer I didn’t like things happening without them talking to me. So now they talk me through the session - saying what they’re doing etc. I find it’s much better that way. Also, on my first day I mentioned that I had some E45 with me and the radiographer told me that they had recently changed their protocol and I could use any cream I liked. It wasn’t a problem. I am having early morning rads and I asked if I could use cream before my session. She said I could but to use it lightly because if it looked ‘shiny’ they’d have to clean it. So, all in all, I having a good time. Short week next week then two the following week… then done. I’m working, but only two days/week and my boss is great and says. It to come in if I feel tired.
This morning I got changed went into the room and the radiographer was new. He asked if I always wore my bra… duh. I’d forgotten to take it off. Felt a right idiot!
hope everyone is moving on up and getting through. One day at a time…
Kerri x
Thanks Dawn! I am now finished! Woooooo hoooooo!
And they were running early, so went straight in when I got there! Stopped for some dinner on the way home and I’m now sitting in my warm comfy bed, feeling relieved!
Very grateful to all all you ladies for helping me through, and wishing the best possible outcomes for all.
Stay strong those of you who are still on the rollercoaster, it will come to a stop! Xxxxxx