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JAN RADS

nickif
Member

Re: JAN RADS

Thanks Di, feel pants, but think its more a cold than the rads. I suppose our immune system isn't the best going through this. I lay on sofa all day today except school run and hospital. I have to go at 7pm tomorrow 😮 I I have booked next week off work, wish I had this week off as well.

didi
Member

Re: JAN RADS

How are you today Nickif ? How is your rads going , I'm starting to feel a bit tired now it's like a weariness I do most things in slow motion lol .

My shoulder is a little better as is my mood .. even though they've bloody changed another date & I've got to do another Saturday! !!  I did have a moan about it which isn't me at all but what can you

Tit4tat I'm glad you're getting more info from here about what to expect with you having a rare ca it must be really hard to get info 

Hope everyone else is OK 

Di xx 

 

tat4tit
Member

Re: JAN RADS

Thanks so much for your input, sameoldme 🙂 Sounds like it was tough, but do-able (just about).  All the best with the lingering s/effects xxx

Sameoldme
Member

Re: JAN RADS

Hi tat4tit.....I had 33 rads in 2012 following WLE and sentinel node removal and 6 x FEC-T.  Reason given was that tumour was on the large side (2.7cm) for a WLE, and the clear margin was <1mm.  25 was recommended for me, along with a further 4 (boosters, but not strictly rads - can't remember name), however as tumour was so close to chest wall they changed to a further 8 deep rads!  My skin did suffer a lot, not everyone's does, and it is still very thin under breast, which has not yet returned to 'normal'!!!!  Used lots of aqueous cream, bathed skin with warm, salted water (after rads had finished), wore a cotton support vest top, and some prescribed cream when skin got a bit infected.  Found it quite useful to wear a soft 'burns dressing' underneath where worst effects were. A cold fan was a lifesaver!  All cleared up after 3 months, as apparently rads keep on working for a while.  My ribs have been a bit affected, and I get a sort of stretchy rib pain sometimes..... consultant says this can take up to 7 years to disappear......deep joy!  The positive is that WLE + rads is a very effective treatment.

 

Hope that helps a little, and all the best for the rest of your treatment.....hope it is kind to you.  Usual mantra is ask for what you need.....xx

nickif
Member

Re: JAN RADS

Feeling sorry for myself tonight. Sore throat and a cold coming 😞 So dosing myself up and a small whiskey tonight before bed for medicinal reason obviously 😛 Lazy day tomorrow for me. 

didi
Member

Re: JAN RADS

Hi ladies hope everyone is well .. been a bit of a mixed week with machines breaking down & lots of waiting around , to cap it all had to in on a Saturday as they've cancelled next Friday to get a new machine in !! My shoulder is still hurting from a trapped nerve been to osteopath x 3 this week !!

Tit4tat I'm so sorry you've got to go through that many rads I've got 20 which was increased from 15 & felt pissed off 

I've also got the asda bras been wearing them since my op & I quite like them ☺

Also using e45 lotion like I've said before , if anyone else is a member of costco they half 2 500 ml bottles for £7.99 , my boob just goes a bit pink in the shower which I was worried about cause I had an abscess & it's new skin 

Felt a bit low last night & today not sure why and after 8 rads I'm definitely getting more tired 

Anyway hope everyone else is well, hopefully soon be over 

Di xx 

Dizzy
Member

Re: JAN RADS

Thank you for the link, it looks perfect and who can argue with the price, I shall pop into asda tomorrow.

 

Ive been on the sick,since mid august when I started my chemo, the,company I work for have been great a very supportive.  They haven't wanted me too work at all during treatment and have paid my full wage the whole time I've been off.  I do miss work tho and being off is just making me very lazy. Can't wait to get back Into a routine again,

 

xx

nickif
Member

Re: JAN RADS

Dizzy I work part time so have been trying to keep going. My boss has been great and I know if I can't go she will be fine. In one way its been my Saviour through it all, normality to balance out the madness of BC. But I must admit I really am tired tonight and got to go tomorrow for the morning and wish I could sleep in! I have booked the last week of my rads off.
I am wearing a comfy bra from Asday £6 and lovely and comfy to wear.  http://direct.asda.com/george/womens/lingerie/strappy-lao ce-trim-comfort-bra/GEM293560,default,pd.html?dual=0&action=product_interest&action_type=image&bucke...

Ele J
Member

Re: JAN RADS

Hi all

T4t, a lady I saw today was on her last of 28 sessions (I think for cervical or uterine rather than breast). Perhaps worth asking your rads team whether you get a smaller fraction but just more of them (so total dose similar to those of us having 15 or 20) as if so it shouldn't be any harder for your skin. And like Butterfly says, lots of people don't have probs anyway so hopefully you'll be fine.

Still a pain to go every day for so long though...sorry to hear that X
Dizzy
Member

Re: JAN RADS

Hi butterfly, thanks for the reply, I have been told most of what you said apart from I was told no aqueous cream and only E45.  I will start with the loose clothing from Monday and ditch my bra, I'm going to see about buying a vest top type Tshirt in a smaller size to 'hold me in place'! 

 

I shall all ask about physio next week, I had wanted to join weight watcher this week but when my nurse found out she stopped me as they dint want me loosing weight while having treatment, gives me a good excuse to finish these Christmas chocs!

 

Nickif you must be slightly ahead of me with your rads, I'm due to finish 2nd Feb and can't wait to get my life back and return to work.

 

Dizzy xx

Butterfly318
Member

Re: JAN RADS

Evening Dizzy

 

I know it's worrying about the skin and the radiotherapy planning have to tell you worse case scenario. Often you will only see discussion if people have a problem whereas lots of people sail through with no problems.  I know all units are different but the unit i went to said no aloe vera / no E45 / no Bio Oil.  They advised me to shower with water only prior to each session, (no rubbing with towel / cool blow dry / air dry only), had early morning appts every day, and then in the afternoon / evening apply aqueous cream only.  I'd had Chemo then surgery x 3 and had some healing problems.  (same scars being cut and stitched 3 times plus i was a larger lady....)    My rads was 10 weeks after the last surgery and i exercised / pilates / yoga throughout and followed their instructions on skin care.  I kept looking every day for my skin to disintegrate / break down.  It didn't even go pink and was just fine. 

 

Just follow their advise on skin care, keep a loose top / no bra / nothing rubbing the skin for as much of the day as possible.  Also if possible try to see if your unit has a Physio who will advise exercises while you are having rads.  I found these were helpful / different from post surgery exercises.  

 

Good Luck with your treatment.  Take Care  Butterfly x 

nickif
Member

Re: JAN RADS

Not heard of that many hun... I don't blame you feeling worried about it. xxx

 

Dizzy I have to have 15 normal and 5 extra *boost* ones. Should be finished the end of January. 

Dizzy
Member

Re: JAN RADS

Hi Nickif thanks for replying, I guess this whole experience is scary, and probably makes us all a little paranoid from time to time.  How many are you having? X

tat4tit
Member

Re: JAN RADS

Thanks for the hugs, nickif.  I am indeed feeling **bleep**!

 

Has anyone heard of any one else receiving 33 rads?  I'm really scared about what that number of rads could do to my skin.  It will definitely leave me with weakened ribs, according to the onc 😞

nickif
Member

Re: JAN RADS

OMG Tit4tat... thats not nice... You must feel like **bleep** at the moment. sending hugs your way xx

 

Hi Dizzy, 

I have had my 7th this evening and so far no redness at all. I think its the every day thing with Rads..and travelling too and from hospital that makes it so daunting 

 

 

x

Dizzy
Member

Re: JAN RADS

Hi ladies hope it's ok to jump on board and join your chat.

Ive had my first three rads this week, due to have 20 in total. I'm getting paranoid about my skin breaking open and my nurse told me yesterday this is more common in larger ladies and that's my category! Will it be a few weeks yet before I notice any skin sensertivity, I seem to be spending ages looking st myself to see if I'm going pink yet. I am using E45 as suggested by my nurse.

I seemed to breeze through my chemo but I'm finding the thought of 4 weeks radio much more daunting.

Diane xx

Dizzy
Member

Re: JAN RADS

Hi ladies hope it's ok to jump on board and join your chat.

 

Ive had my first three rads this week, due to have 20 in total.  I'm getting paranoid about my skin breaking open and my nurse told me yesterday this is more common in larger ladies and that's my category! Will it be a few weeks yet before I notice any skin sensertivity, I seem to be spending ages looking st myself to see if I'm going pink yet.  I am using E45 as suggested by my nurse.  

 

I seemed to breeze through my chemo but I'm finding the thought of 4 weeks radio much more daunting.

 

Diane xx 

tat4tit
Member

Re: JAN RADS

Might just get to join the 'party' this month, and then go all the way through Feb AND into March!  I found out today that, if I don't choose 'extensive' surgery to remove ribs and reconstruct the rib cage, the recommendation is for 33 rads - that's six and a half weeks!!  I was expecting 15-25 so a little bit shell shocked!

Ele J
Member

Re: JAN RADS

Day 2 done, even quicker than yesterday.

Don't overdo it work wise Nicki, your body will need enough rest to be able to repair (and that's why I'm sitting with my feet up watching Homes Under the Hammer...I think my brain has completely atrophied!!) x
nickif
Member

Re: JAN RADS

Well done Ele J... I get strange looks as I have been going in my gym gear as been going there before my appointments. I am not sure how long I can do that though, had no rads today as the machine was being serviced but worked a 9 1/2 shift today and I could cry I am so tired. Working till 4.30 tomorrow then rads afterwards. 

 

Youve just reminded me to put some cream on xx

Ele J
Member

Re: JAN RADS

Hi girls, had my first of 20 today - all fine. I was inspired by someone else in the waiting room who arrived in her running gear having run to her appointment, so might give that a go (though perhaps not tomorrow as my appointment is at 8.18...eek!)

Bought E45 lotion and Diprobase cream for good measure...moisturise, moisturise!

Hope you're all ok x
Kazglass
Member

Re: JAN RADS

Hi everyone blast number 6 due today not too bad so far just a little pink,and starting to feel tired. Will be down to just 9 blasts then so single figures keep smiling ladies we are getting there .

nickif
Member

Re: JAN RADS

Mine is cancelled on Thursday. but suits me as I am work so don't need to leave early.
A trapped nerve not good with having to put your arms up ouch, hope it goes soon xx
didi
Member

Re: JAN RADS

 Hi ladies

Had my 3 rads last week no problems except one of the machines broke while I was on it! Then I've suddenly got a trapped nerve in my shoulder/neck I can't believe the pain. To cap it all my app got cancelled yesterday !!!! Still in pain so have had to go off work which wasn't my plan at all .

Hopefully rad will go to plan today , boob is fine using e45 lotion when I remember it's just slightly pink 

Di xx

nickif
Member

Re: JAN RADS

I have all different times of the day..NYeve was 8.45 yesterday 2pm this evening 5.15. Get your E45 on Ele..I try for at least 3 times a day. Got it by the kettle so I remember when I make a cuppa! I have had a good 2 weeks going to the gym, going to keep going as long as I feel up to it. I think it does help to get as much exercise as possible in..Well for me it does, if I just sat around I think I would feel worse. And I am having trouble with the getting the sports bra off! 

Like kaz no side affects yet but only had 4. 

Ele J
Member

Re: JAN RADS

Well done Nicki and Kazglass for leading the way! Happy New Year everyone!

I have my first blast on Thurs...all my appointments are early (mostly 8.48 - weird time?) so I hope they will not be running late by then and I will be in and out promptly.

Started my Tamoxifen on Sat too...no particular side effects yet though not sleeping well...don't know if that's related.

I've managed to start running a little again in the last week...hoping I can continue during rads but will have to see how the tiredness goes. Plus a bit concerned about friction/pressure from sports bra on delicate skin. Yesterday when I came back from my run I couldn't get my sports bra off over my head and had to call my 18 year old son to help...poor boy!

Hope everyone's ok...going to buy E45 lotion today x
Kazglass
Member

Re: JAN RADS

Hi all on Jan rads, happy new year just had blast no 3 feel ok so far will see how a full week goes . 

nickif
Member

Re: JAN RADS

First full week starts today...not looking forward to trying to juggle everything with school run, and work at the end of the week and travelling to hospital. Noticed at least one machine breaks down daily, luckily mine hasn't so far, and can mean delays up to 2 hours 😞 Roll on the weekend!

 

amberstone
Member

Re: JAN RADS

Hi Eileen  ----- thats so funny to get you on here.  I had a real good dance and a drink for New Year ---- New Start hey? speak soon.

Eiljones
Member

Re: JAN RADS

Hi amberstone,

 

Yes it's Eileen here.  I go on this site occasionally and post the odd thing.  Hope you enjoyed your new Year break. I had a good New Years Eve with my family dancing to Just Dance on the WiiU. lol. 

 

Will be in touch by email soon.   xxx

 

 

amberstone
Member

Re: JAN RADS

Hi Eiljones    not been on the sight for a while.... would you be the Eileen emailing Maggie???

Eiljones
Member

Re: JAN RADS

Hi Kittie4me,

 

I had 15 rads last September/October and used E45 cream and they prescribed hydrocortisone cream for any itching.  I was lucky and only needed to use it a couple of days and I hardly suffered with itching but I did use E45 cream three times a day for a week before rads and a month after.  Doublebase is also a cream that is used to stop itching and my granddaughter uses it for eczema. It does work really well but I do not know how well it works as a moisturiser.

 

I must have done something right with the moisterising because I only went a bit pink a couple of weeks after finishing rads and I did not suffer with soreness and I continued to wear my normal underwired bras.

I also only used simple shower gel and avoided very hot water on my breast when I was showering.  I hope that some of this info is of help to you.  I hope that all goes well with you and try not to worry too much.  I found that the experience of having rads was not as I had feared and I had worried far more than I had needed to. Eileen.

nickif
Member

Re: JAN RADS

Hi Kittie4me... Its all such a whirlwind isn't it. I was told just E45 or Aquious cream. I am using E45 about 3 times a day or more if I remember. 

Had 3 sessions, they are over quick, don't hurt but I don't like it, feel like a piece of meat 😞 The staff are nice and doing their job well, but I find it very depressing. Will be so glad when 26th Jan is here and I can finish them. 

 

 

Lets hope 2016 is a better year for us all on here xx

Kittie4me
Member

Re: JAN RADS

Can I please join in this conversation.

Everything has happened so quickly with me. I was diagnosed following a routine mammogram at the beginning of November. I had surgery on the 11th December and don't need chemo. I am booked in for a rads pre-treatment session on Monday 4th January with three weeks of Rads starting on 14th Jan.  I did have a wobbly about it before Christmas because I had till then just gone along with what I had been told, but the breast care nurse was very understanding and said I could postpone it  but I have come out of the 'fog' and have now decided to get on with it and get it over!

They have recommended a moisturiser called Doublebase gell, which they will give on prescription - has anyone else used this?

 

didi
Member

Re: JAN RADS

I'm at 1.10 tomorrow. . My workplace has been really supportive telling me not to be a hero .. keep thinking I'm feeling a tingling but I think that's my imagination lol 

Yeah we must keep up with the fluids & moisturise soon be done now we've started 🙂 

Di xx

nickif
Member

Re: JAN RADS

Got to hospital to be told there might be delay..3 of the machines had delays from 30 mins to 2hrs!!! but luckily mine was ok and I went straight in. All done in 15 mins. Changed my times AGAIN!! not impressed. I will have to leave work early on New Years eve. On Monday I will kick up a bit of a fuss about times for Thurs and Friday as working. But looking at the risk of delays I am now thinking first or last thing might be best. 

Im using E45. Put it by the kettle so I can put it on every time I make a cuppa. Got to get more water down me so going to put bottle in my bag for tomorrow so I don't forget at work.

I have booked the last week off and my boss has said that if I feel at all tired not to be a hero. So I wont 😛 

 

Im not looking forward to feeling crap again. Ive started going back the gym and am feeling really good at the moment 😞

 

Good luck Kaz tomorrow. Mine is at 2.30 xxx

didi
Member

Re: JAN RADS

i know exactly how you feel tit4tat its been a long haul since my op due to having a seroma issue which then turned into an abscess, so its delayed eveything by 6 weeks or so .Should have finshed my Rads on 16th Dec !! but never mind ive started now which is the main thing.

Di xx

 

Kazglass
Member

Re: JAN RADS

Hi every one my appointment is 1.30 hope to get the rest of my times tommoro, t4t hope you don't have to wait to long for rads. Best wishers for 2016 hope it's a better year for every one 

tat4tit
Member

Re: JAN RADS

After a bit of a meltdown before Christmas I called my sarcoma nurse and she was an absolute star.  The very next day a letter arrived for an appointment with the sarcoma consultant on the 11th Jan and she called me on Christmas eve to tell me my first appointment with the oncologist (scary saying that) is on the 8th Jan.  Whilst I'm hugely grateful to the lovely sarcoma nurses (they are much more proactive than my BCNs) it'll be 7 weeks between op and first onc appointment and no idea how long between that, rads planning and rads starting..... Hurry up and wait, again!  So, not sure if I'll be joining you for rads in Jan, ladies, but I wish you all well and will be following your posts.  

didi
Member

Re: JAN RADS

Hi Nickif , KazGlass

I went at 12 all went ok really quick, Im lucky in one sense that I work in the hospital so I will still be coming into work ( came back 2 weeks after my op on 28th Sept doing shorter hours) 

Ive got all my times for the next 4 weeks all between 12 -3 so not too bad, going to try and work through them but Im going to listen to my body ( which Im not very good at) and if I feel rough I ll go on sick leave!!

Im trying to drink 2 litres of water a day sometimes with a splash of juice in it and also using E45 lotion 

 

My wound has healed great, think it liked the hot tub in Scotland, its left a dint in my boob and is now purple but never mind least its healed and I can now start the end journey to getting well, just hope it doesnt break down again 😞 

 

The only thing Im dreading is feeling unwell again as its been so long since my op, Oh well got to be done !!

Good Luck with your appointments ladies

 

Di xx

Kazglass
Member

Re: JAN RADS

Hi Nickif it sounds as though we are starting rads at about the same time, hopefully it's an easier journey than chemo talking to other ladies it seems to be waves back. Skin burning will be the thing to look for and tiredness hoping to get back to work during rads, only part time good luck to all the Jan rads ladies we will march through Jan together kazglass

nickif
Member

Re: JAN RADS

@Kazglass, Hi <waves> Im going in tomorrow to start so we will be going through it together..

@Didi, what time is your app tomorrow. I am not till 4.20pm, Good luck x
Kazglass
Member

Re: JAN RADS

Hi can I join Jan rads please I have had chemo 3fec3tax A bilateral masctomy and now due to start 15rads on Wednesday thank you kazglass

tat4tit
Member

Re: JAN RADS

Sounds positive, Nickif 🙂 I'm with you on the exercise issue - it's my main stress reliever and not being able to get to classes during tests etc and then after the op was hard. I've done a few classes over the past week and feel I am getting my life back too 🙂
nickif
Member

Re: JAN RADS

I had my meeting today about exactly what to expect and what to look for lymphoedema wise. I found it very reassuring and I got the all clear to be able to go to the gym and as long as I listen to my body I can start training again. I used to go 5 times a week and miss it. I am hopefully doing a 10k Mud Obsacle race in April to raise money for breast cancer care so got to get myself fit for that!! I know that I might not feel like it after a couple of weeks of Rads but It just feels good to start getting some of my life back. He explained that any side affects would peak about 2 weeks after they finish so would probably be end of Feb before I start to feel normal again! As for work I have got to ring my branch manager tomorrow to discuss it. Hospital guy did have all the times infront of him but some at 9.30am and some at 4.30pm so no ryme or reason to them. He said that when I start on the 29th to make sure you ask for time to suit and they will try and help you out. So fingers crossed 😄 

 

 

Ele J
Member

Re: JAN RADS

Hi Tat4tit, yes I've shared exactly that experience of just surrendering yourself to it for the first few weeks/months, but then gradually finding your normal self coming back and doing more research, challenging a bit more, expecting to be treated like a stakeholder in all this rather than a passive recipient.. It's a really good sign I think, like you say, reclaiming your life x
mary32
Member

Re: JAN RADS

Hi

 

I think because the rads are every day they are prepared to listen to your needs regarding the time of appointments. At the hospital I went to they were open quite early, at least by 8am so it is possible to get it done before work.

 

You will find that different hospitals recommend different moisturisers and washing regimes. Not sure why, mine advised something called Doublebase which I got on prescription. I do think its important to start using something well before rads start so you are getting your skin in good condition, then use whatever your hospital recommends once you start getting zapped. And drink lots of water was the other think they said and I also tried to get as much excercise as possible, mostly walking at that stage as I started getting tired by the end of rads.

 

Mary

tat4tit
Member

Re: JAN RADS

So far, during all the (months of) tests and then surgery, follow up appts etc, I have just accepted whatever has been offered and rearranged my life to fit.  Most unusual for me, as anyone who knows me would confirm, but it's such a difficult time, so many emotions to manage that I didn't have any spare energy or brain space to negotiate/argue.  However (I feel there should be a drum roll here!), I have started to reclaim my life and I will be very unhappy if I have to wait week by week for appointment times like they are implying for you, Nicki.  It's the whole being treated as a widget on a conveyor belt thing, rather than anyone looking at you as a real person with a life outside of the hospital.  *Breathes out, feels better for mini rant*

 

Ele, thanks for the heads up re bio oil, I'll add the moisturiser question to my list for the Onc/rads people.  I took Arnica before my op and for a couple of weeks after and I'm sure it helped.  I had some impressive bruises, including a couple of man sized handprints on my ribs below the breast that was removed, though!  I'm desperate to sleep on that side, but it's not happening yet...!

 

Mary, what did you use to moisturise?  Xxx

nickif
Member

Re: JAN RADS

Thanks Mary, Ive asked for afternoons so I could just work mornings, go to hospital and then pick up son from school... I know thinking about it makes me tired!! normally I do Wed morning and Thurs and Friday 9-6.30 and the other receptionist has said she will do afternoons for me so I can just do mornings.

My first they give me is 12pm on the 29th. I am meant to be working the 30th and 31st.  Just hope I can sort it out.

When I go on Wed I am going to ask if I can try for 2-3pm slots, would be easier for me. 

 

 

mary32
Member

Re: JAN RADS

Hi Ladies

 

I hope you all cope well with rads. It is strange at first and I hated the idea of it all to start with but it becomes normal very quickly.

 

About appointment times - you should be able to get times to suit you. I asked for mid to late afternoon when I had them a couple of years ago so that I worked in the mornings then went off to hospital to get zapped after lumch.

 

And moisterise, moisterise, moisterise!

 

Take care.

 

Mary