When did you finish your treatment as in chemo and rads? I’m suffering with joint and muscle pain. Yesterday I had to lift my leg into the car 😳😳. I was like this before I had my hip replacements.
I had had a full body massage yesterday. Apparently my leg muscles are as if I had been doing squats. I wish! Only good thing at the moment I seem to be losing weight. About 3 kgs in a short space of time. Went over to kilos so I could compare with the hospital. Not sure if this is the Letrazole or not. This just keeps on going on and on this rotten disease!
Chemo brain is well and truly here to stay too...I even struggle to remember really good friends names at the moment 🙄
I was researching brands and teva was in my favourites but have ended up with relonchem as this is one the pharmacy can get a little easier so I thought let’s go with this for a few months and if SEs too much after this time will look further a field for a pharmacy who can offer other options. I am still experiencing hot flushes after chemo a long with aching joints and bones so I think I need to probably take something so thanks for suggestion here.
I was hoping to shift some weight etc before loading my system up with new drugs but unless I wake up tomorrow a stone lighter then this looks unlikely now 😬 !
Thanks for being helpful as ever!!! G xx
Oh sorry G, see chemo brain still there 9 months later... Anyway thought I'd add I've been in Tamoxifen since November and have found some brands worse than others for SEs I now have Teva brand every month and although I'm having hot flushes the worse SE is achy joints, the docs agreed it is Tamoxifen but coupled with the menopause and chemo. I have found keeping moving is good, I've up exercise, swimming and walking mainly and also take magnesium and zinc and glucosamine & chodroiton (all verified by Onc as OK to take). I also found some Emu oil with glucosomine to rub into joints which helps. But all in all its OK most of the time. Good luck with the Tamoxifen.. Xx
Thanks ladies re tamoxifen, that is great! DIEP wise I did have a nosey at the actual op on utube but I must admit it is the end result that is worrying me more but you don’t hear many bad experiences with it as far as I can see. Thanks for the Louis suggestion, I like his docs anyway so will have a nosey!
kip thanks for replying, it was DiKat with the rads regime but I’m sure she will have a read.
Best of luck for Tamoxifen, hope it treats you kindly.
I was on it 2 months after surgery before chemo and had hip aches that would wake me at 2am. However since chemo I’ve been fine on it. Still get hip/leg ache but completely manageable. I just tried another brand post chemo and while it might be psychosomatic so far it suits me better. One thing I read is if it troubles you play around with time in day you take it. I take mine when I wake up and now get hip ache at 5am. Not bad but yes it’s there.
Enkoy your weekend
Hello all, just wanted to add that during my rads I used aveeno cream and my skin only hot a small red patch about 2 weeks after finish. Also I was told to have warm baths and font soak for too long. Icoukd use deodorant if I wanted, I also don't sweat under arms anymore so don't use ant but I was using Biosen roll on which is nasty free. Apart from making sure I use fac 50 suncream and being sensible in the sun I certainly wasn't given a strict regime like you G. I'm sure you are able to judge for yourself what you need to do, crikey like to see him dealing with all this.. Why can't they all sing from the same hymn sheet.
I was ok when I took tamoxifen for 3 months. I was absolutely fine on it. I think it’s the 10 years accumulative effect that’s going to cause us bother and of course, We are going to live to old age!!!Don’t doubt it girl.
Diep is tough, but all natural. My tummy causes me more bother than breast. It’s Uber sensitive. I saw a very realistic picture of what to expect on the internet yesterday. I’ll try and find it again and send it to you. Get yourself fit and strong and you’ll manage fine. It looks like you’re already fit and healthy with all your exercise.
I have to have a jab before flying too and wear flight stockings.
If you have Netflix. Louis Theroux “ Under the knife” shows a tummy tuck scar.
One last thing then I will stop bothering u!!
A friend shared this deodorant balm link with me as she has been trying to find something without the nasties in, she has tried lots and non have worked however this one she is raving about! I personally am not going to try it as I don’t intend to change the way I lived prior to breast cancer, as I have mentioned to some of u before, as if I start trying to do this I will get anxious over everything thing and I don’t want to start on that path. I lived a good strong and healthy life before, just bad luck. But in case anyone is looking for something I didn’t want to not share!
I have taken a bath throughout btw. Just don’t have it as hot as I’ve usually had it and I used bubble bath. Neals Yard. My treat to me! All has been well . Deodorant I don’t use. I don’t need it. Don’t suffer from under arm sweating bizarrely.
i hope you’re feeling better too. Hope you can shake off your sore throat.
G, good luck with your mole.
Loads of love
Well ladies, one final thing to share on this glorious start to the weekend...just picked up my tamoxifen....eeek ☹️ I know it is a good thing as some ladies can’t take anything for their risk of recurrence so I do fully understand this. Still very scared though, 10 years of a pill (again very lucky if still around for this or longer). It is somewhat complicated as well with my risk of DVT in the family and looking like I will need a DIEP for recon due to implant looking like a complicated and not ideal results ultimately. So there was talk of me starting a post menopausal regime with the surgeon (despite being 43 and not there yet) instead for two years as lower DVT risk and then going on to tamoxifen but had a chat with onc yesterday and we are going with tamoxifen and maybe rethink later when surgery options and time scales sorted. Also got to have a jab before I fly to thin blood and one on return (holiday not until summer), it isn’t a necessity just overly cautious with chemo finishing not that long ago too etc (I hope I can drink on the jab, haven't looked that up yet 😱)
All in all brave new world about to start...might wait til Monday though 🙄😂🤪
That does sound really over the top to me. If he wants to live a life close to that of a monk then let him go ahead. I think women have a better understanding of the things we women like to do.
My onc said I can go swimming after 2 weeks, but my skin is used to chlorine, so I’m not doing anything different.
I think the aloe Vera has got alcohol in it, which could be an irritant. Zero base is excellent...
I can start wearing sun cream after 6 weeks , but factor 50 in irradiated area and be cautious.
i would just use your own good judgement and common sense Dikat.
im sorry he’s been so strict. I agree with G and feel a bit cross with his rules!!! There is always a middle ground.
He does not have to follow the rules he’s dishing out and he’s just spoiling your life. No one else has been given such strict advise.
One thing I will say, is this morning I put on a dress to travel in and it started to rub me under my arm. So I looked at my skin and there is a tiny red mark. My skin is obviously so sensitive. Slapped some cream on and a bit of betnovate. I’ve had to take my dress off and gone back to a soft t shirt and no bra. It’s going to be soooi tricky trying to look acceptable on holiday. I can’t wonder around with no bra and t shirt. I’m not that brass necked. So it’s true the skin really starts getting more tender at the end of rads.
Catch u all later on
Gosh DiKat! That’s a great load of info! I have to say i’ve been using deodorant cos I get hot and sweaty. Don’t want to be minging as well. I agree with the covering up to a point but we out of all people need that Vitamin D. Hope you get your dates soon xxxx
Belated Happy Birthday and enjoy your weekend
Suprised you're not allowed to use any deodrant. When I had my RT 10 years ago we were allowed to use crystal deodorant . Still use it now. Didnt stop cancer coming back though (was one of the reasons I carried on using it as was told some deodrant can cause cancers )
Also aloe vera was recommended at the time but I didnt use it. Think I just used some simple cream.
I went on holiday to a very hot country 2 weeks after my RT finished. Oncologist said it was ok. Just be careful re the sun which I was. The holiday had been booked before my diagnosis of BC and couldnt cancel it. I remember insurance cost an arm and leg tho
God just gruelling and feels a long wait for you, big hugs. I am also quite cross at some of the info you were given. I think if, when u feel it is safe, to sit in a bit of sunshine with suncream protection is something to
relish not fear or made to feel guilty. I think others can recommend things here that a more open doc may have shared. I get that he is lovely which is great however you also
need to experience things still. I also imagine deodorant options over time maybe something others have had some options given to them 🤞
have a fabulous weekend hun 😘😘
🤞G that all comes back ok with your mole. I totally get the brain detachment, a bit of self preservation! It’s good you don’t need rads on top of everything else you’ve been through, sounds like you’ve had enough messing about xx
Well, I feel absolutely shocking today...really sore throat, headaches etc....will be interesting to see how my immune system copes! Anyhow, managed to haul myself out of bed for my appointment with Radiotherapy doc this morning. Had to set off, 7.30 due to distance, traffic etc.
He was really lovely and very informative but quite strict with my do’s and don’ts! Turns out I am having the boosters, so 20 in total, because of presenting as stage 3.
He said no swimming or spas etc for a total of 3 months from start date. No creams or deodorant on left side, other than E45 or something similar on affected area (specifically said no aloe Vera) again for 3 months....queried deod as not having armpit zapped but still said no! Only to take showers for 3 months from start date (😞 like my baths, especially as I still get aches and pains in back and legs). Also said not to start doing anything unusually healthy with my diet, not to have herbal teas or supplements. Apparently trying to up intake of antioxidants is not a good thing as they can make cancer cells stronger as well as good cells and reduce efficacy of RT. Phew 😅 I also asked him about sun cream to which he answered “I don’t believe in sun cream I believe in staying in the shade where possible, wearing a hat and being covered by clothing. Ok!!
Still haven’t been given a start date. Should receive an appointment for planning scan in next week or so and start 7-10 days after that.
Have a lovely weekend everyone xx
It’s very weird getting checked out for something that is completely unrelated. I am waiting on the results of a mole on my arm which was removed two weeks after last chemo, the thought it is anything is not something I can compute at all, I am not worried as it simply can’t be anything is how I am dealing with it, I am quite detached, I guess that is how my brain is trying to protect me.
As for rads ladies, after being told I would need them after lumpectomy and no chemo, and then having to go back in for a mastectomy and being told chemo needed but no rads, and then being told actually you need rads too I did a lot of reading on them and obviously it is a really effective treatment and the potential collateral damage is very real but my view was that cancer damage is a certainty so I had to go with it. As many of you know I have since been told that rads is of no benefit to me so I appreciate I am now not able to fully empathise with you ladies having to go through it now and I am in awe of you all digging in and facing it and sharing the experience together, massive hugs you amazing people, G xx
Oh I got one of those bowel cancer letters on my 50th Birthday of all things. Anyway, the test came back clear. Thank goodness.
You know, I’ve got a strong sense of smell, but really love this zerobase cream, it’s so soothing and very effective , but the nurse told me today, she couldn’t stand the smell. I can’t smell anything. 🤣 It must be the clinical smell folk don’t like, too many bad memories!
Drummerswidow, , I’m sorry to hear about your eyebrows. Nothing wrong with looking a bit fierce. 🐶 A bit kick ass . Just frown at anyone who gives you any s*** Ha ha, I hope they settle down soon. I guess they will seem extra dark after going from zero brow to full on devil darks.
Thanks for filling me in on what to expect skin wise. I’m quite olive skinned and tan fairly easily, so I will have to see whether my leathery skin can now weather the rads storm. Watch this space for the next instalment. Coming to you live from an A&E skin department somewhere in deepest darkest Cornwall.🤣
Yes, I was peed off to read about the long term damage rads can do with regard to heart and lungs. Slightly peed off my onc didn’t tell me about this before hand, especially because I was borderline rads and I made the final decision to go for it.
At least it stops me from worrying about a local recurrence. I think it’s quite effective in lowering that risk.
Hey ho, onwards and forwards.
Thanks for the birthday wishes absolutelyannie. I’ve worked as a home carer in the past so completely understand your comment about the creams 😂 I’ve had a second reminder through for my cervical smear but can’t think about that until after my rads. I’ve got my appointment tomorrow so hopefully will get a start date 🤗💕
I got a letter calling me to routine Bowel Cancer Screening today. they are not letting me go too easily!!!
I have had enough of cancer and although the people are lovely hospitals but guess I will have to take up the NHS on their kind offer
Hope you really enjoy your birthday on Tuesday. Yes I am the 4th person and at 55 the youngest!!!
not looking forward to the daily trips but love my Vaseline Intensive Care with Aloe Vera so will enjoy slapping it on after my rads.
I saw the staff going around with tubs of what looked like Dipsobase or E45 - not for me!!!! I worked many years ago as a Home Care Assistant and those creams are truly horrid. No they stink!!!
I’m quite fair skinned. My skin was going a bit red during the rads. It’s just got a deeper red and some looks like I have a suntan! I don’t think your skin will deteriorate. Just keep on slapping on the cream. It peaks about 2 weeks after the rads and then starts to subside.
It’s great isn’t it. We have this treatment then you realise you may have lung and heart problems in the future.
On a brighter note, I had my eyebrows hennaed today. My friend said to me ‘They’re a bit fierce’. My reply ‘ I look like .... Coco the clown’! NOT having that done again. I have spent most of the evening trying to tone them down. Even the dogs didn’t look impressed lol Oh well there wasn’t much on the tele lol
Enjoy that holiday!
I start rads on 11th July so first week and 5th week is ok. 2 for the first week. Then daily for 3 weeks and 3 days the 5th week.
Oh no sunnydaze - are we really more susceptible to this crap in a different format. I have been told that the breath holding technique protects heart and lungs. didnt know that skin cancer was on the list. never was good in the sun. my skin is far too fair and coming from the West of Ireland where it rained from September through to May it rarely saw the sun while I was growing up!! Hasn't seen much since
The bit at my neck where they have zapped the nodes has been but today I feel I have turned the corner and it’s getting better. At the end of my mastectomy scar line looks sore but I still have no feeling there. A possible bonus. I’ve got a sort of large rectangular patch which is different coloured skin. Not bothered only me and the medical staff to see it! 😂😂
When do you start your rads?
The bit st my neck where they have zapped the nodes has been but today I feel I have turned the corner and it’s getting better. At the end of my mastectomy scar line looks sore but I still have no feeling there. A possible bonus. I’ve got a sort of large rectangular patch which is different coloured skin. Not bothered only me and the medical staff to see it! 😂😂
When do you start your rads?
Ahh thanks Shi 😘😘😘😘
ill not be leaving the club Tropicana lounge any time soon. You’re all too much fun to leave.
Good luck for your rads Annie xxx
Thanks Drummerswidow and AbsolutelyAnnie,
I feel ok tonight Annie, but it’s such a rollercoaster this horrible journey, you never know how you’re going to feel one day to the next. I’ll take the good times when they come 👍👍👍💖
Thanks for the advice re;factor 50 Drummerswidow. The nurse at my review told me not to put any sun cream on my skin for 6 weeks, just keep the area covered and moisturise for a month. It’s unbelievable how we all get told different things. I think they make it up as they go along. A radiologist told me not to swim for 2 weeks and my onc said I would be fine to swim!!! 😝
Oh Drummerswidow has your skin changed a lot over the last 2 weeks? . What did it look like when you finished to what it looks like now? My skin colour looks the same as the normal breast just now, even though it’s been fried.👎 Will it deteriorate significantly from this point onwards? I’m just trying to prepare myself, knowing what might be in store 🙃
I now know I have a heightened chance of skin cancer and late on set lung cancer due to rads.
Possible heart disease from chemo and endometrial cancer from tamoxifen. It’s the pits isn’t it. You’re cured from one, but it’s really like dodging bullets.
Good luck with your rads Annie. The three weeks does go quite quickly. The staff are lovely and it’s not as bad as chemo, but it does pull you down a bit as you go in for yet more treatment.
Hugs to all
Sunnydaze 🛎🛎🛎🛎💃🏻💃🏻🕺🕺💃🏻💃🏻🕺😁😁😁😁👍👍👍yehhh 🥳🎊🥳🎊🎉🎉🎉🍾🍾🍾enjoy your holiday, keep in touch on club Tropicana thread 🏖🏖 😁😁absoluteannie 👍👍just pace yourself on rads and keep hydrated and slappy dappy doobe the cream on and still for about 6 weeks after let the air get to skin as much as you can go braless and draft scarfs over your top are 👍 it gets a bit ground hog day about 10 in but you get a little club going in the rads lounge as you all meet up day in day out 😁and compare skin 👭👭💕💕✨✨Shi xx
That is exactly the way I was at my post op appointment. I was just overwhelmed by the kindness of the surgeon and his assistant. I think we are in a safe space with appointments with the people caring for us - it is like the rug has been pulled from under our feet.
Well done though on finishing your journey. well earned holiday. keep in touch though and if you are near a Maggies Centre they are great for people who know what we are talking about .
not looking forward to my 20 sessions but at least the end is in sight.
Enjoy your holiday. The Radiotherapy unit rang me today and told me to put factor 50 on.
I have a lovely, rather large patch on my left side where my rads have been. It’s quite surprising how big it is.
Thank you very much Mary Kamille for your good wishes. How are you doing, is your skin getting any better? I hope so.
I finished my Rads today and have now reached the end of treatment. I felt a bit emotional. A mixture of tears and smiles.
My skin looks ok today, but the next two weeks are going to be really telling. I’ll keep moisturising and keep my fingers crossed. There’s not a lot I can do if my skin decides it wants to break down.
I will definitely cover up in this heat wave. G, very wisely gave me a good tip to use light weight summery scarves to help me cover up when my tops, dresses don’t come up high enough. The whole breast radiation field was larger than I anticipated.
So, that’s me finished my course of treatment. A hell of a journey, but relieved. I’m going off to pack my 🧳
Catch you all soon
Have a good holiday Sunnydaze and it sounds as though all will be well as you are not red except after shower. Keep up with the cream and cover up - especially if this heatwave goes on! xx
Thanks for the tips Sunnydaze, much appreciated as always 🤗💕
Thanks for the birthday wishes Shi. Cheers 🥂 ❤️❤️❤️
Just a quick one about rads, if you need to have a snooze during the day do, just listen to your bodies, any concerns about skin, tell your rads teams ❤️Dikat wishing you 🎂🥳🎊50th next week 💃🏻💃🏻🕺🕺💃🏻💃🏻💃🏻💕💕✨✨Shi xx
For all those about to start radiotherapy.
Here are some good tips that I have been given and I wanted to share. It’s not rocket science and we all know it, but I found it useful.
1. Slap on the moisturiser, loads.
I guess if your skin is going to break down it will, but these things aren’t going to cause any harm either.
2. Drink loads of water. Good for keeping the skin hydrated at cellular level.
3.Eat loads of fruit and veg. Skin integrity is supported at the cellular level. Feed your skin.
4. Stretch and exercise as much as you can, before and after radiation.
You’ll be glad when those over baked muscles and lymph veins start to toughen up
Great that you can change your dates, if you get an interview.
Its a good point you made about staying positive. I think once rads has finished, I will really work on this.
Yes, it’s so sad how many of us get this terrible disease. I want to move forward quicker than I can, but it’s definitely baby steps. We’ve taken a hell of a knock.
Enjoy your day
Hope you get away lightly this time. Good for you 2 weeks post rad. Well done. Keep slapping on the cream!!!!!
It seems to be working.
I just want to get started now. I have been told too that should I get an interview for that job at the hospital it should be possible to change my rads time so that I can do the interview.
Hope your skin stays under control
Just saw your post where you are only going to use the word CURE. great idea. I was told that the more positive I was the better the outcome. But it has totally transformed my thinking.
Hope you enjoy Devon and Cornwall and good for you for getting away.
hope you get your start date soon. Yes. 4 people in the office. Yes there was a reason for my redundancy 2 years ago as the office was so horrible!. When I was offered the chance to get out I did. It was really strange as there was another lady there who got everything I got!!!
Mention your birthday when you go - they may start after your celebrations!!
Hope you are gearing up for your birthday and that you will thoroughly enjoy your day. Will be waiting to hear about when you start.
i don’t think Green People do an spf50 sadly, only an spf30. I have ordered x2 100 ml bottles, they’ve sold out of the 200ml. The price was the same.
You might find this link useful, I did! Good reviews and list of the most effective in ranking order.
I have been trying to find a non sticky natural spf50 and it looks like I am going to go for a Dead Sea magic spf50 organic cream. Holland and Barret sell it.
I won’t need the spf50 until I go abroad though. Will cover up until then.
AbsoluteAnnie, I didn’t think much about cancer either until like you, it hit me on the nose. I have three friends who have had it. One with stage 4 and doing really well after 6 years so far.
I was diagnosed 14th Nov, so just 2 weeks after you 🤗 It will probably be a similar date when I start RT, hoping I will find out Friday.
Wow, the 4th person in your office!
If they want me to start next week Sunnydaze, I will have to say no, it’s my birthday Tuesday and have things planned most of the week with it being my 50th. The only medical appointment I’ve accepted is a Muga (heart) scan on the Friday. I’ve been looking on the green people site, maybe I’m being stupid but can’t see a factor 50....do they do one? Xx
thats sounds awful. but keep putting pressure on your BCN until it is sorted out. Hope it starts to clear up fairly soon.
enjoy your break - you've earned it!!!
I start my rads 11th July - thought we were around the same. Like you I am not looking forward to it. just want it over and done with now and try to get back to some sort of normality. I know though that as soon as treatment finishes I will be worrying about every little ache and pain.
I was diagnosed 29/10/2018 and I reckon a whole year will have passed by the time I am out of hospitals. Always hated them and still do even though I cant complain. Most of the staff that dealt with me were kindness personified. I will truly never forget all their patience and kindness shown to me.
me always and forever independant but brought down to the realities of getting older with all this rubbish. Onwards and upwards ladies. thanks for all the useful information.
I am actually the 4th person in my office to get this and at 55 I am the youngest. I never gave much thought to cancer until it hit me right bang on the nose.
I bet you’ll be started on rads next week Dikat if your meeting is on Friday.
Glad your skin is holding up Drummerswidow, it sounds like you will get away with it. 👍
Yes, I’ve got a sun hat and a baseball cap to protect the old bonce when and if it’s sunny.
I agree about covering up for the rest of the year. I will have my swimming costume on in the water, but will cover up after that shorts and t-shirt. I’ll always put factor 50 on my breast irradiated area. I’ve always been careful.
Hi MaryKamille and Sunnydaze.
Sorry your rads have made your skin so sore MaryKamille. My skin is itching and under my arm is now feeling a bit uncomfortable. I’m 2 weeks post rads too.
Sunnydaze. It’s funny how we all get different information with the Radiotherapy. I was told to cover up for the rest of the year and then to use factor 30 at least. Enjoy your holiday. It will be good to get away from it all. The scarves is a good idea. Don’t forget your hat!!!
Thanks for the info MaryKamille
Always useful to know what to look out for. I have an appointment with Radiotherapy on Friday. Really hope I get a start date as it’s 6 weeks since surgery and I’m fed up with being in limbo and not being able to make plans xx