I hope you're all having a nice break over the long weekend. I'm hoping this gives the skin a break.
So I've now had 5 sessions, 10 more to go. I've had no skin reaction at all, I've been keeping up my gym routine and feel absolutely fine! Maybe a bit more tired than normal in the evenings, but I didn't sleep well last week, so I think it's more that than anything else.
I have a glass of wine this evening! No one has told me not to, so I hope that's OK? Long may the lack of side effects continue! Or is it too early for them to kick in?
I'm using Diprobase cream 3-4 times a day. I've given up on bras/cropped tops etc, unless I'm in the gym; I'm quite small so not desperate for support most of the time.
Have a great weekend all, take it easy!
Corinna and Alison - thanks for asking about the rash.
Corinna - I hope you are feeling a bit more positive now and that you haven't got anything similar. I think getting out and doing normal things helps more than anything else.
Alison - glad it was better today. The quicker they can get you in position the better because the sooner you will be out of there. Hopefully you will be fine for now, and you have the long weekend to recover, but keep an eye on it next week.
Snail - what a disappointment. I was at least given some gel to be used if the skin broke down. Moisturisers like aqueous cream don't actually do anything other than help reduce dryness and cool the skin - they admitted as much this morning. I hope the yoghourt helps (can't do any harm), let us know if it does. I found it helped to drink plenty of water in the morning before going to the hospital, and to take a small bottle of water with me to the hospital every day. If you put your drinking water into a measuring jug or use a half pint (250ml) drinking glass, it is easier to keep tabs on how much you are drinking.
I rang the hospital this morning about the rash. They said people often have a reaction like this a couple of weeks after radiotherapy finishes, and that it should go away on its own after a week or so.
In the meantime they advised me to carry on with the aqueous cream (which isn't really helping and may be making it worse), and switch to the gels if the skin breaks. They also suggested applying the Flamazine cream I have been given in case of burns (sparingly) as this may help with the itching.
I have carried on applying the aqueous cream all over the zapped area, plus a small amount of Flamazine to the area with the rash. I also started taking antihistamines because I acquired a couple of insect bites in the garden yesterday (only noticed them this morning) - I am hoping they might help with the rash too.
So far the itching does seem to have reduced a bit, but it's early days. I will let you know how I get on.
Have a good Bank Holiday weekend everyone, and I hope the weather and radiotherapy effects are kind.
Hi LadyBowler thanks for your kind reply. good to know its normal to feel like this and Im hoping things will feel better soon. yes Im on Letrazole.. been ok with it so far . and I did feel a bit better today for seeing my friends and having a walk hugs xxx
thanks Optomissy for you sharing your experience with me . helps to know Im not the only one feeling like this.I am on hormone tablet aswell(letrazole). and I did feel better today eventually after seeing friends and having a walk.. good to know you have imprved and feeling back to normal!! XX
Hi OldDawn63, straight in and out day. I did mention to the staff about the reaction, and they were a bit surprisedI considering it was the first one. They said they will keep an eye on it but tonight now I have noticed a red patch on my bust already. I am going to keep using the moisturers tonight and see what it looks like in the morning. Hopefully the hospital will be able to help you with the rash tomorrow. Alison.
I still have the itchy rash across the booster area unfortunately. I thought it was starting to fade, but it isn't and if anything is slightly worse today, so I am going to ring the hospital in the morning for advice on what to do.
JoJo - how are your sore patches and rash now? I have been plastering on the aqueous cream but it doesn't seem to have helped with the rash so I think something else is needed.
Kezzar - it's normal to be a bit pink at this stage. I am sure they are keeping an eye on it but if it starts to get sore, tell the radiographers next time you are treated.
Snail - looks like virtual bell ringing on 12 May then. Hope your review went well.
Alleck - how did you get on today - what did they say about the reaction?
Corinna - it's now a fortnight since I finished, and I feel sleepy sometimes, but it is just for short spells. I will start to fall asleep in front of the telly or when reading, but if I then decide to go and have a nap, I find I don't sleep for very long. I don't feel down about anything except the rash, because I have kept busy. I am looking forward to the holiday next week and going back to work afterwards, but concerned the rash could spoil things if I can't get it under control.
Pippa - glad your rash is better, mine isn't, unfortunately. Try massaging the scar with moisturiser to see if it helps. My scar was a bit sore when I finished the 15 general rads, but it is better now, and I think the extra moisturiser and massaging helped.
It is natural to feel that way after finishing active treatment, remember the effects of the radiotherapy is still going on for about two weeks after you finish so you will still feel tired, make sure you are drinking enough fluid to help counter the fatigue as that will help. I think as well we have got so used to hospital appointments, being seen by professionals that suddenly when it stops it is a little scary. Are you on any hormone tablets?
I must admit there are still days when I feel at little "lost", but l find that going out in my garden in the fresh air really helps so hopefully being with your friends and out for a walk will help.
Remember we are here whenever you need to vent or just talk things through a bit.
Sending you asquidgy hug
Just to say that I was surprised when i finished my rads not to feel euphoric, but instead felt a little "flat" and as though "is that it then?" and thinking a bit more about the "what ifs" (recurrance.) My post-rads onco appointment went well and the onc said this was REALLY normal to feel like that and that it passes. I think we had been so focussed on getting our surgery done, and getting to our appointments etc that we were in a bit of a whirlwind, and then wham, we're in the post-treatment void. 2 months after finishing rads I can say that it DOES get better and I feel completely "back to normal" (whatever that is!) apart from needing a bit more kip, but that might be my age anyway - missing bits of programmes that I want to see when my eyes close for 5 minutes! Keep up the walking - it's been my salvation and I've lost 12 lb weight (on purpose) despite the lovely hormone tablet I'll be on for years and years. I guarantee how you are feeling will pass, honest. xxx
Thanks for your kind comments Jo Jo just feeling a bit down at mo. What with just finishing my rads I should be on the up and up but feel very tired and down and upset at times but hopefully this will pass soon. Phoned my breast nurse today and didnt manage to get across how bad I was feeling as she said she was pleased to hear I was doing so well when before she went off the phone,so I ended up feeling even worse. but will be going out with friends for a walk later so hopefully I will feel better after that.. Take care everyone. xxx
Thanks loads for your kind thoughts Jo Jo . they are very much appreciated.and well done and best wishes to Jayne for finishing rads,hope thing continue to go well take care xx
Congratulations Jayne on finishing at last - virtual bells have been rung!
There were no bells at my hospital. It wouldn't be appropriate, because the unit treats patients with all sorts of cancers, including people having palliative radiotherapy. Several of the people I spoke to were having treatment for more serious conditions than me, with much less certain outcomes. It was quite sobering and made me realise how lucky I am.
Kezzar - you are doing well so far, so the E45 must suit you. It's amazing how different the policies are about what creams to use and when. At the hospital I went to, they were adamant I should use aqueous cream and nothing else, and that I shouldn't apply it less than 2 hours before treatment.
Snail - hope the sore areas don't get any worse, but if you are concerned you can discuss this at the review. They may give you some special gel if they think you will need it.
Thats how the bell riniging on here started because one of the ladies said about a bell in their rads ward and many of us did not have that so what we used to do is when someone finished rads we would go out and ring our doorbells or knock the knocker to celebrate.
Just a question. Does every radiotherapy unit have a bell to ring? Mine has one and it says to ring three times after you've finished your rads!
Congratulations on finishing and rinign those bells for you tonight.
Take it easy for the next couple of weeks and carry on the moisturising and fluid intake.
Have a lovely warm cosy evening.
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
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...
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.
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!
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
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
Hope the skin rashes are getting better Jo Jo and Dawn .My rash is better but like you said Jo Jo the scar under the armpit is worse..They did warn me about that.I might try the E45 intensive .Hope you are feeling better and less tired Corinna .Ive been going to the Haven which I think is like Maggies and gives fantastic support. In june Im going to start a Moving Forward course at another centre. Hope your last seesion goes well Jayne.
Good luck and best wishes to those starting and continuuing radiotherapy.
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.
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.
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!
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.
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
i started red off with aloe Vera' but changed to E45 intense recovery, and it has been brilliant. I slap it on in the morning, after rads, in the evening and before I go to bed. Been using the residue on my legs and arms and I'm softer and smoother than I've been for years! Lol!
One of the new new people at the hospital today was surprised how well my skin has held up, and told me to make sure I continued doing what I'm doing, for the next two weeks - it's my last one tomorrow! Wooooooo hoooooooo!
Cant come soon enough to be honest. This has not been an easy process for me, what with the difficulties in avoiding my heart because of changes after set up, travelling an hour and fifteen minutes each way every day, the treatments taking anything up to an hour and fifteen minutes and a bout of food poisoning in the middle, it feels like it's been forever!!!
And make sure you do take care of yourself. You might think you'll be fine, I thought I would, I'm only 49, and felt good going into it, but I have been really, really tired. Felt nauseous since the beginning, even before the food poisoning, and it has really knocked me. I really hope you will have no adverse reactions, but just please be kind to yourself and listen to your body if it says rest!
I know that everybody is different, but I absolutely could not not have worked during this treatment. I am so grateful that I have a job where I could take the time off. I don't know how I would have coped otherwise.
my last treatment tomorrow is not until 18:50, and my husband is taking me. So, if I feel ok afterwards, we will stop somewhere for dinner on the way home to celebrate. If not, we'll do it later in the week! Or next week. I just long to feel normal now!
Good luck, and love and best wishes to everybody, wherever you are in the process. Hope your experience is as positive as it can be. Xxxxx
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
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.
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!
Well done for finishing ,Jo Jo .I finished on Friday and have a holiday booked in three weeks too .I was told to use factor 50 on the area even tho it will be covered by my clothes.The area is quite red now but not itchy or sore. Its great not to have to travel to the hospital everyday .Did the Look Good ,Feel Better course yesterday.Felt exhausted when I got home but it was well worth it !
Hope everyone is ok .
Well thats it well done you have got there :). Make sure you continue with the fluids, moisturising and rest over the next two weeks as you will still feel the effects of the rads.
You will need to make sure that you have a very good sunscreen when you go on holiday as well as the area, even covered up, will need protecting.
And here are them there bells ringing just for you JoJo.
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.