Oh mate I am so sorry to hear that, you have been through so much already, but you will get through this. I really do not know what to say that might be of support to you but just know we are all here for you whenever you need us
Sendng you loads of hugs xxxx
Unfortunately my second CT scan showed 4 lung mets. Waiting to see if I get accepted for Ibrace. More than likely as it is open access at the moment, but it is extremely expensive . Just coming to terms with the diagnosis, but loads of help from Maggie's. Bless that place!💝
Oh I am so glad that she did make you do it, it is a momentus point in our journey with this disease so very well done you.
When you say next step of the journey, are you having more treatment??
Thanks Helena. Nearly didn't ring the bell, but my lovely rads girls said I had to as I'd done the journey. It did give me some closure, as I then felt quite proud of making it through. Next step of the journey now. X
I thought you finished today but I forgot you started on a Saturday, sorry mate that they are late but heres the bells for you xxx
Sorry to hear that you are suffering but it does sound as if it is under control now. You are nearly there, they do say the two weeks after you finish you are still "cooking" as it was dsecribed by my rads team, so hopefully it is not going to be too long before you are over this bit.
Sending you a gentle hug
Well, rang the bell on Friday, but this is just the disease that keeps on giving. Burns now coming out, even my back is slightly blistered. No one told me that when my sub clavicle was done it would go through to my back, so have not moisturised. 😱 Fortunately I was given some cream from the burns unit which is marvellous, plus codeine so I get some sleep. Apparently it 'peaks' about a week after the last dose ! Oh happy days. 🤕
Oh that was good timing. Make sure you carry on with your regime for the next two weeks and listen to your body it will tell you when you need to rest
Thanks! I have just got home, having a cuppa and biscuits to start the celebration! Meeting friends for dinner tonight.
Well definitely you have finished rads today so I am properly ringing the bells for you tonight. Hope you have a lovely lovely celebration for this and your other half's birthday.
Well you will get a double ringing on the bells on Monday I had worked it out and forgot about the bank holiday.
Well that is a doubly good reason to celebrate on Monday.
Thanks, sadly because of the bank holiday, I have one more on Monday. It's the other half's birthday too so I am sure we will be celebrating!
Sorry I was not able to send you a message last night, but wanted to ring the bells for you in celebration of you finishing your rads yesterday. Hope you are having a lovely day today on your first post active treatment day xxx
I think you have or are finishing your rads today, so wanted to say congratulations, dont forget to keep up your regime for the next couple of weeks, and we are ringing the bells for you today mate.
Oh you are so nearly there mate. Make sure you do get the cooling gel I am sure it will help. You certainly dont need what is happening next door either, you rant away mate xxxx
Hi! I had number 14 of 18 today. My boob is very red, itchy and dry. I have been drinking like a fish and alternating between aloe vera and aveeno. I have a skin check tomorrow after my cooking, the nurse seems rather disinterested which is a bit annoying. After telling me it was too early to get symptoms when I had what turned out to be a reaction to e45, she looked last week and said 'oh it is a bit red' but that was it. The radiotherapist said today to make sure I don't leave without cooling gel tomorrow.
I am very sleepy, but still going to work as the house next door has been demolished and they are building two new ones about 6 feet from my bedroom wall. They are also not able to tell the time so start early and finish late, and work on days not in their planning and the council dont give a stuff, so basically work is quieter and less stressful, rant over! (Sorry!)
Have my first of twenty three radiotherapy sessions tomorrow ...not going to lie...bit nervous.
Have my water and E45 ready....any other tips?
Dear all. I finished my 3 weeks on Friday. Some redness and soreness under the breast and in the cleavage area, but not as bad as I anticipated. I still feel tired, and have become quite teary since week 2. My employers have been great and I have been off work. I have an emotionally demanding job as a social worker and just felt i did not have the strength for others when the focus needed to be on me. All the best to others and make yourself the priority X
Ecstatic- number 10 done, so half way today. 😆😆😆😆 Skin feeling a little tight, especially on neck area. I've put my new cream on which is super. Stopped the itching straight away. Resting and aerating my booby as instructed after bathing in cool water and slathering QV cream on - again. Im hoping to be able to look back and laugh at all the strange things I did, and was required to do!
Hope everyone is motoring on ok? X
Just got home from 3rd Rads session and wanted to reassure anyone else who has just started or about to start using the deep breath hold technique.
It was a bit daunting at first but I'm getting the hang of it now and it really doesn't feel hard to do. It feels difficult at first but honestly just trying to relax and thinking happy thoughts means it's over in no time. Well 40 seconds to be precise! I have three lots and the second two are for 32 and 31 seconds so surprisingly easy after the first one.
My breast feels a little tight today but not unpleasant and was I told this was entirely normal.
The only really symptom I've had so far (if you can call it that) is weeing so often from all the water I'm drinking!
I'm super fortunate in that I'm being treated privately and have been offered free sessions of complentary therapies like reflexology, meditation & mindfulness, counselling and acupuncture. I can choose two so I've gone for the first two. Think I might give myself a pedicure before my first reflexology...!
My therapist decided I didn't need counselling as I am so positive. I'm an E45 bottle half full kinda girl but I wouldn't hesitate to try it if I felt I needed it and I'm not not discounting it yet! I'm sure many of you have much more pressures than me, like children and work and I feel for you and do hope you are doing OK...
I know there are other places that offer complentary therapies for free and the nearest one to me is called the Haven in Titchield, Hampshire, for anyone near there. My Consultant is a trustee and lots of people have said really good things about it but I'm sure there are many others around the country?
I must admit that I was a bit sceptical at first but, hey, why not try them? We should all be kind to ourselves and take advantage of anything that might help us feel a little better in some way.
Wishing you all the very best in your treatment and take care.
I think you finished rads today so ringing the bells for you. Remember to keep up your routine for the next couple of weeks and listen to your body.
Just finished session seven. Breast pink and slightly swollen, but good check over from team. Told to moisturise around the side of breast and onto back as well as all the breast itself. Apparently my area of treatment extends this far. Who knew? I'm also having treatment on the sub clavicle so my chest and neck area is tender today . I was told to expect this by Onco as the flesh is quite thin there. Advice today was to try and get at least 30 mins per day laying flat without clothes. This will ( should?) allow air to get to the affected area, dry the skin and remove weight dragging on the affected area. Apparently the first place the skin normally breaks down is under the breast area. Again, who knew? Drinking for England, and as slippy as an eel, so onwards and upwards! 👍 X
Most ladies find the effects starting to be noticable around 10-14 days and other ladies notice earlier. Your rads team will be keeping a close eye on how your breast is reacting to the rads, but if you are worried then mention it to them on Monday so that they can advise you accordingly.
Hope you are moisturising regularly and drinking plenty of fluids xxxx
Hi Meash, wish I could say my hair on my head is growing but it isn't !! Boo hoo😢. I've recently started Letrozole so guess that may be why. I've been told that hair in that armpit will never grow again, but that's a plus, I think. X
Hi Louise Jane
My oncologist told me to start the Anastrozole not long after surgery and before the rads, but I didn't fancy doing the two things at once so I took the first tablet the evening of the last day of rads. At a follow-up appointment I confessed to the onc and he was unworried about the few weeks delay. As it was the rads were fine and so is the Anastozole, so i probably could have done the two together but I don't think it made much difference anyway. Hope all goes well with the rest of the rads. x
The breathing thing is something that ladies who are having radiotherapy to the left breast and is to do with protecting the heart from the rads,
Good Evening Ladies
It sounds like everyone has made a good start to radiotherapy. Can someone tell me what the breathing thing is???? I have not heard of this and not had it mentioned to me. I have had my 5th session today of 20 and all going well so far. I have been given samples of double base gel and double base washing gel, I have been using this and it is fantastic. It is also on prescription!!! I would certainly recommend it.
How is everyone's hair growing after chemo? My eyelashes have not started to grow yet but have some eyebrows coming through. Lovely to hear you are all doing so well ladies 👍😀x
That sounds good! Maybe skip 'Another one bites the dust'?
I heard a Rabbi interviewed on the radio recently who said that was accidentally played at a funeral instead of 'We are the champions'!
All the very best!
PS Hope I don't get banned from this site for using the F word...
Hi, thanks for that at the end of week one nd 12 sessions to go, have developed a lump -very near the surgical scar but it's not fluid, so it's been checked and we will have the oncologist take a look, but other than that and realising that all of this scary technology is benevolent and the end result of a lot of work by good people, it's OK.
Of course compared to Chemo, it's a doddle : I have what's called a frozen shoulder so the main practicality - and I hope the only one! - is getting arms into position for the zap. Ow! Here in Scotland treatment is via the Beatson Charity, who also supply a load of complimentary therapies, and we have a holistic centre called Maggie's (no relation) which is about support, therapies and a gentle caring atmosphere, right next door.
I really do send all possible best wishes to everyone going on this journey, may your experience be positive and outcome successful
It's so good to hear how everyone is getting on and your helpful updates (Anniej - E45 who knew?! And thanks for update re deodorant).
Sending my love and bestest wishes to you all!
Week 1 done for me and so far, apart from tiredness in the evening no other differences. I am using the Dr Organic Aloe Vera cream and drinking loads of water. Two more weeks to go. The staff are lovely at the Royal marsden in Sutton and I am keeping a record of the tracks that are played during my sessions-never know, might use them as a playlist at some point! Best wishes to everyone else
Hi ladies, first session this morning in Newcastle. Took my huge E45 cream with me ( on offer at Sainsburys) only to be told NOT to use it. VERY surprised. I was given a tube of cream called QV and told I could have as much as I needed. My rads nurse also said there are other creams, should I need them, if there are skin problems. I was also told that the only shower gels recommended are Simple and any baby ones. As I'd already bought E45 shower gel as well as Sanex 0% I wasn't impressed, so she is going to check for me.
Found the first session quite wearing as I was positioned and repositioned to match the tattoos up to the bed. Had both the breast and then the sub clavicle done, so everything happened twice. Then I had to be re- tattooed to match the (very very slightly) altered positions. Found the fact that the bed itself swung around as well as going up and down quite unnerving. Wasn't expecting that! Anyway, over now, so one down and nineteen to go!
Best wishes to those in front of me, and those following. Soon be ringing that bell, ladies! 😄
P.S. Tilly, I was asked about type of deodorant I used and it was noted down on a questionnaire. Organic and roll- on seemed OK with my nurse.
Hi. I hope everyone is doing ok. I was told it was too early for my itching to be from the radiotherapy (!) They think I had a reaction to the e45, so told me to use aloe vera and aveeno. Off I went to boots, they currently have a 3 for 2 offer on aloe vera gel and 2 for £10 on aveeno if anyone needs to stock up!
Thanks, Helena. All psyched up and ready to rock'n'roll. Drinking for England, and moisturiser at the ready! 😅
Thanks so much for your replies!
I've had so much love and support from my partner, family and friends but there's nothing like sharing this experience with others who are going through it at the same time. Plus getting reassurance from women who really understand what it's like.
Good luck for Saturday Annie. I'll be thinking of you.
I too too am so pleased I've joined BCC!
One down 17 to go, ok, but a bit itchy (but I was before I went oddly!) just put some aloe vera on.
I am using pitrok which seems ok.
I was told not to use aveno today, but just e45. I am drinking like a fish!
You will be fine honestly i think as at every point of our journey with bc it is a bit of fear of the unknown, once you get the first one over with it is a lot easier as this is the one that they have to check the measurements etc from the oncologist and they will probably do a bit of a talk with you so it takes about 25 minutes all together, after that they are usually about 10 mins max
Hi Tilly, I'm using Dr. Organic tea tree roll on deodorant from Holland and Barratt. Nice fresh smell, goes on easy but not cheap. Is anything on this journey? Im using Aveeno moisturiser as my Chemo nurse gave me some, but my rads nurses say they have moisturisers if I need them (?) I've stocked up on E45 which is on offer at the moment in Sainsburys . I think it's a case of when not if! I'm moisturising like mad at the moment and trying to up my fluid intake. Start on Saturday and despite assurances am beginning to feel nervous - a little. X
I've got to do the breath holding but they were quite laid back about it when I went for my planning meeting. I don't start the actual radiotherapy until the 16th. I had 2 CT scans, one breathing normally and one holding my breath too. They did tell me I won't have to hold my breath for so long when I have the actual radiotherapy compared to holding it for the CT scan.
I've tried quite a few natural deodorants since being diagnosed and the one I've found the best is by Lush. x
I have just done 2 days out of the 15. So far so good although I was shattered last night. Ive invested in some aloe vera mosituriser from Holland & Barrett. So pleased to have subscribed to BCC!
This is my first time on here but I've been reading lots of posts which have been really helpful and encouraging. What a lovely lot you are!
Anyway, thankfully I've not had Chemo (had Oncotype DX score of 19 so decided against it) so straight to Radio Gaga....
Also need to use DBHT as on left side and had two CT scans yesterday - one breathing normally and the second breath hold. I stuffed it up the first time and now I'm worried that my heart got a dose. The nurse said I did fine but I am worried. Has anyone else had this experience?
I'm still a bit confused about best deodorant to use. I have looked into Pitroc and Bionsen but not sure which is best, or you may have other recommendations?
The end seems a long way off. I won't be starting until 22 Aug and finish on 26 Sept but I will be following you all in the meantime and sending you my very best wishes...
Hi all! Mine is on the right, so no breath holding, my surgeon said for some reason it is more common on the left than the right.
I am due to have my first session tomorrow, thankfully I just noticed I am supposed to be there half an hour before the appointment time! I thought I would treat myself tonight to scampi and chips and a bar of chocolate. The other half is at the Great British beer festival, I am just about to start on pint of water number 4!
Hi Basia, I am haivng breath holding as well. I found it easier than I had thought at the planning scan. I get a snazzy pair of sunglasses to wear with a screen showing me when my breath is deep enough to hold. Just waiting to start now - 21st is my start date.
Lady bowler, just picked this up as have had a week away in the caravan. Sat in the middle of a farm field in pouring rain - it was heaven! No hospital appointments, how great was that? My first appointment is Saturday , but after that I'm the normal Monday to Friday job. Apparently Saturday is a wonderful time to go as it is very quiet. No machines breaking down from overuse, and no one late. Well, I'll just wait and see. 🤔