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Fab Feb Rads anyone?

Community Champion

Re: Fab Feb Rads anyone?

Fingers crossed the the physio helps the cording on Weds. I've seen the bed, PurpleClare has it on her blog, looks 'orrible. Have a good trip x

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Re: Fab Feb Rads anyone?

Long, but fine, although I can think of a million places I'd rather have been than there. All set to have first session on Feb 4th. That "breast board" looks like a torture device; I just managed the over the head arm position with the underarm cording. Breath holding was fine. I do fear I will need draining again before the first session but we'll see how it goes. xx

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Re: Fab Feb Rads anyone?

Brave thanks for the PM. How did your planning go? x

Community Champion

Re: Fab Feb Rads anyone?

Ah thanks AC. Still feel great, but today have developed comedy swollen, red, throbbing toe, probably a toe infection . . . Come back immune system PLEASE!!

 

 

You should still ask about parking, but we asked during chemo & told big fat no, so bought the season ticket, otherwise it would have been £12 per chemo (& I had 13) & £2.50 for each set of bloods before hand. God only knows what you would do if you were on benefits. When I had my port inserted, I had to go on 3 consecutive days to see doc, have pre-op & see onc.  I said to my HB how expensive it would be if you had to arrange childcare/get time off work. l know money is the last thing you should worry about, given the circs, but still seems odd time to fleece patients. x

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Re: Fab Feb Rads anyone?

Hi there, I had bilateral radiotherapy last summer and sloshed on Diprobase two or three times a day. I was recommended E45 but found it a bit harsh for my skin.The sunburn effect started during the last week and I was pretty tired from the start, although I managed the 75 mile daily round trip with no problems. I was given a weekly parking card on my first visit (£1.80 a week) without having to ask about it, they were very organised and caring. Good luck to everyone   Sue xx

Member

Re: Fab Feb Rads anyone?

 Hey Bibi,

 

Great to hear you are feeling GREAT!!! Cherish these times and hold on for as long as your mind and body allows. One week tomorrow, I start and I have to say that the marking has faded on my chest but a dot remains. Hopefully, that's normal. The side marks are still very much present but not too intrusive.

Tom I'll be sorting time off from my job, leaving a little earlier as I think this will give enough time to have rads, avoid school and rush hour traffic, get home and then rest, drink lots of water, apply enough cream - I am considering to buy Ralife - a bit pricey so not sure. I may just use a good aqueous cream or aloe vera gel. I'll ask the radiographers what they recommend. Maybe coconut oil could be good too.

Have you ever enquired as to whether we may be entitled to a pass for the car park? I read somewhere that some hospitals provide this due to the frequency of visits. I'm going to find out.   

 

Speak soon and FEEL good that your body FEELS well!!!

 

AC

Member

Re: Fab Feb Rads anyone?

Fantastic news, Bibi!  Enjoy every moment of feeling normal Smiley Happy xx

Community Champion

Re: Fab Feb Rads anyone?

AC I've got 4-30pm every day. I chose a late one so I could get into that car park, having seen the queues round the block from the chemo ward window, but I was wondering if there I'll be more delays later in the day.  Let me know how you get on after your first week. I feel amazing this weekend, it's like the chemo has finally left the building & I'm back to feeling normal for the first time in 5 months. Soooo happy! xx

Member

Re: Fab Feb Rads anyone?

Hi Bibi

I'll look out for you - depends on the appt time too. At the mo, mine are late afternoon.

Thanks for recommendation on creams to use.

All the best. Keep strong and try to think mostly of positive things.

 

AC Woman Happy

Community Champion

Re: Fab Feb Rads anyone?

Hi Angelcake if you see a nervous newbie in the waiting room on 15/2 that will be me. A lot of people seem to say e45 or acqueous cream.  I've got something called Ralife cream. This is not scientific, but the same company produced this nail cream that was wonderful during chemo, so I'm assuming their rads product will be good too. You can lose your nails on chemo, but mine are still how hey were pre chemo thanks to that cream. xx

Member

Re: Fab Feb Rads anyone?

Hey Everyone,

Glad to be here - Rads at Marsden Surrey pm

Can anyone recommend the best or most effective creams to use on breast while having rads?

I'll be increasing the water intake and a gentle walk 3 times per week with light exercises in between. Obviously, I have no idea how I am going to react to rads and I have a full time job - pm appointments seem to make sense in relation to getting extra rest and sleep. It's all new.

Member

Re: Fab Feb Rads anyone?

Someone was recommending a gel filled neck tie/scarf type thing, but the reviews were very mixed.  I'll PM you in case the forum doesn't allow specific items/websites to be published xx

Community Champion

Re: Fab Feb Rads anyone?

What's the towel called Tats, sounds as if it could be of use for night flushes due to tamoxifen too? Have a lovely weekend all. x

Member

Re: Fab Feb Rads anyone?

Sounds like you needed a treat, Brave, I really hope the film and the company hit the spot Smiley Happy  I've become a tad reclusive, except for family and friends coming here.  Must make the effort to get out more....

 

I think a duvet day is a brilliant idea given what you've been through, Bibi.  I have struggled with mornings since my dx and stopping work, but had a good reason to leap out of bed today as we visited our son at uni and treated him to lunch Smiley Happy  Both my children were born in Surrey and we visit old friends there regularly.  

 

Getting a more nervous by the day about rads, probably because I read lots of older threads on here about side effects.....really must stop doing that!  They did give me some ideas and I've ordered a towel that cools whilst wet but doesn't wet the skin and will be getting cabbages because the leaves are supposed to be good for burns as well as engorged, uncomfortable breasts after childbirth.  I'll let you know if either or both of them work Smiley Happy

 

Tat xx

 

 

Community Champion

Re: Fab Feb Rads anyone?

Oh Brave, how frustrating that the cording is back. Have a lovely afternoon & get yourself back to that physio who helped last time. xx

Member

Re: Fab Feb Rads anyone?

Hi all. I have been so tired all this week. I was back driving on Tuesady for first time since op and think i did too much. I also had a seroma drained the day before..It's not painful but i find the procedure quite stressful. Also, I burst into tears this morning when i started doing my physio and realised the cording under my arm has got even worse.All that said, I've just had a lovely coffee with a friend and I'm off to see Carole at the cinema with some friends. Ups and downs.xx
Community Champion

Re: Fab Feb Rads anyone?

Hi Tat I'm getting there slowly ta, although just couldn't be bothered to get out of bed today. Maybe the weather putting me off, or perhaps I am just a very lazy person these days. I'm at the Marsden Surrey. I used to work at the QE many years ago. xx

Member

Re: Fab Feb Rads anyone?

A warm welcome angelcake. We can support each other even if none of us actually wants to be here! We also start rads on the same day, although I'll be carrying on through to 17th March Smiley Sad

 

Val, I'm sorry to hear your neuropathy has forced the end of chemo for you and you are worrying about what hat could mean. Its just a cr@ppy place to be, having cancer, but when your treatment doesn't go to plan it's such an extra burden. I haven't called the helpline here as my cancer is a sarcoma, not bc, but lots of people really rate the nurses. Why not give them a call and see if they can give you some more info/stats so you can organise your thoughts and hopefully worry less?

 

How are you today, Bibi?

 

I'm curious to know where people will be having rads if you are willing to share that info; I'm at the QE in Birmingham....

 

Hugs to all, tat xx

Community Champion

Re: Fab Feb Rads anyone?

Hi Brave & Angelcake Good luck for the rads planning.  Val well done on finishing chemo. x

Highlighted
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Re: Fab Feb Rads anyone?

Hi Tat taste in my mouth subsiding but you remarked previously I did not have much of a gap between chemo and rads well surprise surprise they stopped my chemo I have had 3x3 EC and 7 taxol. The periphal neuropathy has got worse just mentioned it to the nurse and that was it. She phoned the oncologist who was in Clinic then I was told thats it no more. You could end up with permanent damage. They had already reduced my dosage  of taxol 2 weeks ago. I cannot sleep for worrying about not having the other two doses.

anyway PICC line out next Thursday planning for rads Friday start  15 February. Cannot wait to get it all over with.

good luck with your treatment. Hugs Val

Member

Re: Fab Feb Rads anyone?

Hi Everyone,

I am a Feb reluctant rads starter and had advised to strongly consider having the  breast bed, where my tumour laid, zapped with powerful beams. I had CT planning today, start 2 Feb for 15 sessions. Had clear margins all around, DCIS, low to inter; tumour 48mm/55gms weight - "to be on safe side rads." - surgeon says/BCN agrees. After WLE, I was hoping I wouldn't need rads but there you are...it's a reality of a cancerous disease highlighted from a routine mammo. TBH, I shouldn't complain as like some of you brave ladies on here, I haven't had to go through chemo first and I hope not after wards later on in the now new world that I call 'cancer world'. Good luck everyone Smiley Happy

Member

Re: Fab Feb Rads anyone?

Welcome aboard, bravescholar Smiley Happy.  Hoping you are in the 70% whose recon doesn't harden, sounds so much better when you say it that way round 😉

 

Bibi, hoping you have noticed even more improvements today.  And Val, hope the taste in your mouth is improving.  

 

Tat xx

Member

Re: Fab Feb Rads anyone?

Hi all. New to this thread but know Bibi from the August Chemo thread. Hi Bibi! I have my CT scan/plannning session on Monday 25th Jan with a view to starting the first of my 16 sessions of radiotherapy on Thursday 4th Feb. Oncologist ran through everything with me at my appointment with her the day before yesterday. She warned me there's a 30% chance my DIEP flap reconstructed boob may harden - forever. I know it's cosmetic but I'll be really upset if that happens. Still, last stage of this awful journey so the sooner it's over with the better. Good luck everyone.

Member

Re: Fab Feb Rads anyone?

That's great news about your legs, Bibi.  It must feel sooo good to know that as you start to feel better this time you won't be going back to chemo for another kicking Smiley Happy  Rads will knock you back a bit, but with an end in sight, finally. That day can't come back soon enough, eh? Tat xx

Community Champion

Re: Fab Feb Rads anyone?

Hi Arawak Impressed you are working! Like Tat says, we're all a bit up & down, but there's no shame in that (a normal reaction I would say). Feel free to seek our help or have a bit of a moan if you need to.  Tat glad you're having a good day. We need to enjoy the calm before the storm.  You have a good way with words .... I am definitely a reluctant radiator😊. I can lift my legs today without feeling as if they have a knife in them for the first time since October . Small, but very welcome, advances back towards normal. xx

Member

Re: Fab Feb Rads anyone?

Hi arawak and welcome to our group of reluctant radiators 😉.  Working away from home 4 days a week is tough at the best of times, so I really feel for you trying to deal with bc too.  I had an mx and removal of pec muscle  on 26/11, so we are at a similar point in our recovery.  I have good days (usually when there isn't an appointment looming or just gone) and bad days when I am weepy.    I can't work because of the nature of my role, and having too much time to fill can be a problem. Today was a good day, so I have spare hugs for you 😀

 

Will you have to take time off work for rads, presumably your treating hospital is nowhere near your work location if you need to live away from home?  

Tat xx

Member

Re: Fab Feb Rads anyone?

Hi everyone out there, came across this thread and at last felt as if I was not alone, Surgery on 1/12/15, rads appoint on 29/01 to plan course of 15. Feeling low, don't know why, still working or trying to., which takes me away from home for 4 nights a week......

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Re: Fab Feb Rads anyone?

Wow, can't believe you have to pay for parking while on active treatment Smiley Sad  Our health trust doesn't seem to give much free compared with the comments others have made, but free parking for rads is a good call.  Some reserved parking spaces would be a good idea too as that's often the hardest part of the journey!

Community Champion

Re: Fab Feb Rads anyone?

Thanks.  I keep thinking that it should get better soon. That's very reassuring snout the planning, ta. I am pretty numb on the op site from my boob round to my spine, so at least one should be painless. I think I'm having 2, but might be different when i get there. Some places have radiotherapy free parking, but not so at our place. x

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Re: Fab Feb Rads anyone?

I do hope you start to feel better really soon, Bibi, and get your strength back ahead of rads.  I am grateful I haven't had chemo too, I know it is in a whole different league to rads.  I'll keep repeating that mantra to myself - sound advice, thanks Smiley Happy

 

The CT was done very quickly and once they were happy they had me lined up correctly they did the tattoos.  I couldn't feel the one on my mx side or on my chest, but I did feel the one on my left side - just like an injection and over quickly.  After I got dressed I was shown where my rads will be done and and the procedure to follow.  The whole thing was very efficient; my cynical mind says it's because they're not fleecing you for parking while on active treatment Smiley Wink

 

Hope you have someone looking after you tonight, Bibi.  Sending hugs, Tat xx

Community Champion

Re: Fab Feb Rads anyone?

Glad it was ok. Did the tats hurt? You'll just have to take it day by day & we'll be here to give you support throughout. Did u have a CT? I've finished chemo today 🍾🍾, a little earlier than expected because of toxicity.  Feel blo*dy awful at the moment, but things can only get better. What I have found during the dark days of chemo is, that however awful you feel, night follows day, follows night  . . etc & eventually your last treatment comes around & it will for you too. I just hope it's not as bad as you are expecting, xx

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Re: Fab Feb Rads anyone?

Thanks, Bibi Smiley Happy  It was easy and quick!  I start on 2nd Feb, so by my calculations I have my last one on 17th March.  Definitely a marathon and not a sprint!  The radiographer confirmed that 33 have been prescribed because angiosarcoma is aggressive and needs a big hit.  I am expecting to have lots of fun with side effects... Smiley Sad  Oh, and I have now earned my name.....my first (and last) 3 tattoos done!  Tat xx

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Re: Fab Feb Rads anyone?

Good luck for your appt Tats xx

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Re: Fab Feb Rads anyone?

Yes you are right. My breast cancer nurse told me there is not always a gap between chemo and rads we asked the consultant radiologist about this he said its three weeks that is his rule. He then gave me the date of 15 February I must admit I never thought about it. It's only 18 days. Ah well what's 3 days when you have been battling on for 9 months with one thing and another to do with breast cancer. I woke up this morning with the most awful taste in my mouth it's getting worse. Just eaten half a tin of pineapple chunks magic. Hope everyone is well and anyone starting tomorrow let us know how you are. Hugs Val

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Re: Fab Feb Rads anyone?

You don't have much of a gap between chemo and rads, Val.  Hope you are keeping well and feeling up to starting rads so soon after your last chemo cycle.

 

Hi Jilly, welcome to the thread. I know what you mean about starting rads.  I've waited over 7 weeks since surgery and have a marathon course of rads, but keen to start so I can start counting down the days 😀

 

Community Champion

Re: Fab Feb Rads anyone?

Hi Jilly Sorry to hear you need rads too. Good luck with your appt. Let us know how you get on. BBx

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Re: Fab Feb Rads anyone?

Hi ya x I have my app next week so I'm guessing mine will start beginning of feb x yuk not sure yet how many but was talk of 3 weeks still don't no about chemo x so I guess will be told that to x just want to get going and try and move on x love jill

 

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Re: Fab Feb Rads anyone?

Spoke to them today. They had me down for planning but did not tell they say they never do until nearer the time. Do they not realise we have things in our lives we need to organise. Anyway it's 29 Jan start rads 15 February. So I am happy with that. I finish chemo 28 Jan. Shall we celebrate !!! Hope all is well with you.val

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Re: Fab Feb Rads anyone?

Hi Val and welcome aboard. I have had two teams (breast and sarcoma) involved in my care and some things have shown up a lack of communication between the teams, leaving me to chase up appointments, info, etc.  Thankfully, my sarcoma nurses are really proactive and get things done, so I always go straight to them. Mope you can resolve your questions - don't be afraid to keep pressing for answers xx

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Re: Fab Feb Rads anyone?

Nicki VERY impressed you've managed to keep working. Well done. What are you putting on the sun burn? x

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Re: Fab Feb Rads anyone?

Hi Val I am on weekly Paclitaxel & finish a week on Monday (can't come soon enough as I feel worn into the ground by chemo now). I got my tamoxifen from my onc this week & she said definitely don't start until chemo out of my system, but she's relaxed whether I start at the beginning or end of rads.  My hair is growing quite fast now & I can see an improvement week on week, so I think I'll let it have a full month before I start taking the hair thinning tablets ha ha. She said, after the first lot, I should get them from my GP. xx

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Re: Fab Feb Rads anyone?

Yes, driving myself every day! My boob just feels like i have had it out in the sun a bit too long and I can see it is getting redder. I am tired and the travelling is a pain as well as been working part time. I have next week off work so will be better. But the treatment itself is easy, just lie there for about 5 mins! 

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Re: Fab Feb Rads anyone?

Hi there me too been given a start date of 15 February but not had planning yet. I started my journey 16 July masectomy chemo started end of September still got 2 weekly to do. Feel it's a bit like DIY

Since  my first oncologist meeting I have only had 2 I have not been told anything had to ask. Well was told scan needed to check state of bones at first oncologist meeting in August last year. She  signed me off on the 2nd which was 22 October should I be pleased or should I be scared .Had to ask today when will I have Dexa scan for bones. Late this afternoon they rang to say it's been requested then I asked what happens about hormone therapy ,you will start this after chemo remind us again. These conversations are between me and the chemo nurses who are fantastic. Think I get a prescription from my GP for these but who tells the GP.

hey ho getting there slowly. My radiation will be in Leeds which is only about 21 miles away so easier than a lot of ladies just hope it does not snow. Then I worry will the oncologist ask me back for a follow up? Who knows

Where are you based. Good luck with your treatment. Hugs Val

Community Champion

Re: Fab Feb Rads anyone?

Hi Nicki

Thanks for that. Prefer a roll on to au naturel! How have you found it? Would you mind me asking if you were ok to drive yourself there & back? x

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Re: Fab Feb Rads anyone?

Hi Bibi, just looking in but I will be finished mine the end of January. I was told roll on deo is OK as they are not doing under my arm, also I got to number 10 and they have said to stop wearing my comfy bra as rubbing. :/ As im only small, can go without if I really have to but don't like it. Smiley Sad 

Community Champion

Re: Fab Feb Rads anyone?

Well I would congratulate you on avoiding chemo, but a different type of cancer, which happens to locate itself in your boob, sounds like a double whammy of nastiness. I didn't get clear margins in my surgery either & it's a real kick in the teeth isn't it? I remember that day as being one of my very lowest points, but I did go for the second lot of surgery.  Yours sounds like a difficult choice though if they were talking about removing ribs.  To be honest, both your options were awful & you made the decision which was right for you at the time.  

 

I chose 4-30pm for car park purposes too, but also because a couple of people I know said you turn into a dormouse during rads & I thought if I have it late I can go home, have supper & fall asleep.  Also if I am not too tired, can also do something during the day.  I hope it's not a strategic error, as there may be more delays later in the day. xx

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Re: Fab Feb Rads anyone?

You might regret encouraging me to moan, Bibi Smiley Wink

 

Hospitals are so different in what they do and how they do it!  I have asked for mid afternoon apppointments as the car parks are quieter then and I can walk my dog in the morning.  It's great you know already what time yours will be and can plan for that.  Have you had surgery and/or chemo?

 

My tumour was/is angiosarcoma, so not breast cancer but a soft tissue cancer that happened to be in my breast. I had an mx on 26/11 with the removal of my pectoral muscle. The surgical margin in one area was less than 1mm, hence the aggressive rads.  I was offered the choice of more surgery to take ribs to get wider margins, but it would mean a long recovery with no guarantee of a 'cure'.  Angiosarcoma has a high rate of recurrence, so we've decided to keep the surgery as an option for the future, if needed. I'm also worried about my ribs and lungs, I've been warned my ribs will be weakened by rads.  There hasn't been a lot of good news, but the tumour was on my right, so at least my heart is mostly out of the way!

 

This forum has saved my sanity because I can say things I can't say to my OH, kids or family.  It'll be good to support one another through this next stage..... xxx

Community Champion

Re: Fab Feb Rads anyone?

You're most welcome to moan to me all you like.  Have you had long to wait after surgery? I should think they will give you some special advice/creams for that many.  It may be that you get the same total amount as us, but in smaller doses. Is yours maybe in an awkward place? Mine was right at the side next to my rib cage, so a little worried about my lungs/ribs getting zapped. I am trying to put the thought that this is radiation we're talking about out of my head & just get on with it. You have a long journey. Do you know the time of day yet? All mine are at 4.30pm. xx

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Re: Fab Feb Rads anyone?

And I didnt't refresh the page before posting, so missed yours Bibi!  Welcome to the club 😉. I haven't been told anything about deodorant, clothing or anything else yet!  I'll make sure I ask on Monday.  I'm dreading it, 33 is a huge number and I am expecting skin breakdown and tiredness, especially since i have a 30-40 min trip each way to the hospital!  I haven't had chemo, so feel I should suck up the rads and not moan 😉

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Re: Fab Feb Rads anyone?

Lovely to meet you Ms Insomniac!  Keep posting, we can get through this together.  Tat xx