Hi Sunflower, sorry you are having such a miserable time with rads. I don't seem to have suffered too badly, (hope I am not tempting fate) just a bit stiff in the shoulder, think its the position I am in and a bit pink in my armpit but the skin is holding out ok. Still waiting for tiredness to kick in, I bet it arrives on Christmas day!!!! I have got 3 more sessions to go next week and in some respects I am going to miss it, obviously not the travelling back and forth, but just knowing that you are being treated and monitored. I have been told there will be a helpline I can ring if I get any problems but the hospital has been a bit of a safety blanket these last few months and to be out in the world, appointment free, seems a bit scarey. Anyway roll on next Wednesday, last session and a lovely celebratory meal out with OH and possibly a nice bottle of bubbly.
Hi Julieta sorry haven't been on for a while, RADS aren't my favourite friend at the moment I seem to have every SE already! not complaining though I know that they are doing the job of zapping the gremlin so just have to put up with it, but oh the tiredness now is really silly!
I have kept my gown too and I hate the sight of it keep it in a bag so I can't see it reminds me of the hospital.
Annew I know where you are coming from re: the machines they try their best at our hossie to keep to times but one was being serviced yesterday so there was a lot of waiting around not good when you feel sick and tired - think the anti-sickness pills are making me tired
Oh Joy! not many more to go, good luck all with your treatments
Just read my post and it sounds like I am really miserable I'm not really but this is the only place that I can let my inner moans :((
I had day 3 of rads today and am struggling not to get irritated and frustrated. 1st day I sat there for half an hour as the time for my new patient appointment came and went and then they said I didnt need to go through consent again, I asked why I had an appointment for it and I could have come in later - the response was I could go through it afterwards if I wanted. Aaaaarrrrgggggghhhhhhh. Some what missing the point, I only didnt want to be sitting around for no reason. Then I asked for one of the appointment times to be changed and got told yesterday that as the machine I was on this day was being serviced and I was on a another machine it would be impossible - not a problem I said I will shuffle around my other appointments - today I got a change of time for this day - and yes it would have been lovely if I hadnt changed my appointment yesterday afternoon to fit in with them. Aaaaarrrrgggghhhhhh again, I asked for it to be changed back and the response was they didnt know why I was told that yesterday and it would have been ok to change it.
I also mentioned that I was expecting 20 appointments and they had only given me 19, to be told they had adjusted the number as I had 2 sessions 3 months ago, oh I said 2 weeks ago you told me I would still be having 20, we changed our minds, but thanks for checking aaarrrrrgggggghhhhhhhh again - thanks for not bothering to tell me.
Sorry rants all out of the way now. On the positive side I have had 3 rads, in September I was hospitalised on day 3 so didnt quite get this far, heres hoping I can get to day 19 without any incidences!
First RADS done and dusted.
saw your post re the gowns, I found this quite interesting, I have been allocated my own gown (No 17) and noone else uses it - posh or what. We have poppers on the shoulders and down the front,but only the bit to be zapped is opened to the air and the machine, so not too bad. Did not find it cold (luckily), and it was not bad at all, glad first one is over now, just 14 more to go, and I have been given a Christmas calendar with little opening doors by a friend, I have to open one each day when I come back from the Zapping and eat the chocolate within - nice to have something to look forward to!!!! Lovely friend.
i just signed up to this website today as i'm starting radiotherapy on wednesday and was beginning to become concerned about the side effects and how i might cope with them
i'm going to have 6 weeks of radiotherapy and it should be all done and dusted by the end of jan. Like some of the rest of you it will continue over christmas meaning a few weeks of less than 5 treatments.
it's great to hear advice from those who have experienced this previously - thank you for sharing
Good luck tomorrow Anne. I will be having my 8th session tomorrow, will then be halfway through. I am popping in to see my BCN as my wrist has become very sore and swollen and as I had a partial axillary clearance, I am terrified it might be the onset of lymphoedema. I have had a very tearful weekend wondering what else can be thrown at me. Maybe it could just be joint pain from the Tamoxifen (I hope so).
I start rads again tomorrow, bit nervous, got an irrational fear that I will end up in hospital again (I know it is unlikely but its what happened after 2 last time). Trying to think that the sooner it starts the sooner it finishes - Feels like a little while without getting my boobs out, but I'm sure after a few days it will all seem like normal again lol
40 mile round trip for me and the traffic is unpredictable so an early start for my 8.40 appointment in the morning - am wishing I asked if they are shut any days over Christmas, I suppose not long till I find out now
It's weird Kinsee but the amount of people I have spoken to who have said chemo was a breeze to rads is amazing. I think it is the pure inconvenience of having to travel miles because usually it can't be carried out at your local hospital, it all feels very clinical, lying exposed on a cold uncomfortable plastic bed with usually male students fresh from uni in the room, tv camera watching you etc! I do find it all really unsettling.
Yep I know there will be people on here that slate me for getting upset about male young students and I know they have a very important job to do, but I don't care I much prefer women being around me when I am at my most vulnerable. All very impersonal, scientific, and just not nice at all, but it has to be done no choice. I just shut my eyes now and try to imagine I am on a beach, very difficult under the circumstances though but it is definitely getting easier each time and I have only done 3, won't be long before the end is in sight.
That is hard kinsse. I had to have another tat too but not had to wait that long. I think anything is easy after the chemo! That was hard. But behind us now thank goodness.
I've just had my 3rd zapping. Yes you get used to stripping off and lying topless with all these different people appearing and pulling you around, male or female oblivious to them all, just wish they'd put some pictures on the ceilling to look at. I don't get a gown just ahve to strip off in the room with them setting the bed up, and isn't it cold in that room. Yesterday had a right performance, they set up for the treatment then decided they weren't happy with the tattoo so get sent for replanning (had to wait 2 hours for that), then after that back for the treatment, what a performance, clothes on and off all day!!
I have a 68 mile round trip so then at 4pm hit the rush hour traffic with the M25 gridlocked
Compared to chemo it's a doddle, just very tired and sore aching shoulders from having them behind my head all day yesterday
Morning well two down and 18 to go, already had male students and two different men in with my boob out!! suppose will get used to this the staff are all really nice. I too have a posh gown.
60 mile round trip for me too. /wish the cost of deisel would drop!!
Mazzalou I can feel your joy at finishing the treatment must be a lovely feeling really pleased for you
I am just back from my 3rd zapping session it felt ok this time quicker and a lot more comfortable because I felt like I knew what I was doing just 13 more to go! - I have less sessions than I originally thought so thats a bonus 🙂
Sunshine enjoy your lie in, my sessions are mid morning but still have to get up to do bits and bobs then drive over there know it is a pain but well worth it.
Last one today and no more 60 mile round trips arriving an hour early so that I get parking - yippee!
Told to carry on not using deodorant for another couple of weeks and keep up the aqueous cream for the same period as the effects continue working for this amount of time.
Consultant said that my skin looks fine so hope it stays that way as a couple of weeks time is Christmas!
So all done for me now, apart from 3 weekly herceptins and muga scans and a ct scan so it's been a long haul since discovering my 'lump' in March. Then the op, the chemo and the rads - what am I going to put on next year's calendar now that my life will be without quite so many hospital appointments?!!
Good luck to all of you still wearing your rad gowns, and wishing you all a merry Christmas, and above all, a much better 2012 than 2011 has proved to be!
First one over for you sunflower you will be amazed at how quickly the sessions fly by. I have just had number 6. They have put their christmas music on today, so I lay there singing along (in my head obviously), I will be sick of them by the time the 21st comes, my realease date yay!!!! So far skin is holding out fine and tiredness hasn't kicked in yet, although all my appointments are very early in the morning so I am looking forward to a nice lie-in at the weekend.
Happy zapping everyone x
morning sunflower.so glad it all went well for you yesterday didnt wear a grown as i was called in early (nearly had a heart attack ha ha ) befor always had to wait one time over 1 hour late!!so was realy fedup as it takes a while to get home room also cold but you are not in it for long,how posh is your gown we have poppers on shoulders soon be over keep up with the cream.
mazzalou last one for you (yipee)hope all goes well for you from now on
Morning, had my first treatment yesterday found it all a bit scary coming at you from all angles saying 4.9, 79.8, 69.2 to the left whats that all about then hahaha felt I was in a science fiction film and I was the alien they had captured! really weird but not too unpleasant. It is a pain with all the travelling etc but at least I feel that the gremlins that may be left are being zapped so I feel it is well worth it. Just dreading the cold though keeping still in a freezing room is no fun at all but shouldn't moan really it's worth it so 1 down only 16 to go whoop!
and on a fashion note we obviously have more trendier gowns here :))) ours have a zipper front and velcro on the shoulders so that only the area they are zapping is bare how posh are we hahaha
thanx mazzalou hope all goe`s well icant wait to finsih fed up with it all but am trying to keep my chin-up but some days are harder then others x
Good morning Queenie
No I am not on tamoxifen as very weakly hormone receptive and oncologist said that I wouldn't derive any benefit from it. However, I am HR2+ hence the herceptin for me - you can't win em all!
good luck sunflower it`s not as bad as you think,you`ll be in and out in no time all done and dusted x
well done sunshine only a third to go how are you doing?
i have 8 more days am a bit red (but that is normall)and have deloped a rash(also normall) looks like a heat rash still using the cream nurses are very good,i do use the gown have a laugh with the ladies that use one too.
mazzalou you must be very happy or you taking tomxifen if so how are you getting on with them?
Hope all goes well for you today Sunflower and that you have been worrying yourself over nothing.
I also don't bother with the hospital gowns that do up at the back - I just put on my cardi back-to-front - so much easier.
I'm nearly there - penultimate one today and review session and then last one Thursday and then just another 13 herceptins to go for me.
Remember to smile for the radiologists!
Good luck sunflower, you will be fine. I don't wear a gown just whip my top off and thats it. Luckily I am so small chested I don't need a bra. Tomorrow will be my fifth session, so a third of the way done.
After having a lovely week with no appointments I now have to come back down to reality, first session of RADS tomorrow feel really nervous know I shouldn't do reading all of the posts but I do.
Maybe after tomorrow I will feel better, my stomach did a somersault tonight when I packed my lovely RADS gown it feel so real now 😞
thanx tired tom.hope its going ok and you are coping ok its a shame that we cant sleep thats my biggest problem but that has been all through chemo hoping it will be ok to start work in jan
the hospital is always running late 20 to 30 min some time ,my appointment is @4 so will get home by 5.30 or 6 hopefully#
still only 2 more wks to go
best wishes to you all
morning ladies, I hope everyone is having a good day today. I'm having my 3rd rad today and I just can't stop yawning. Feeling very tired and lathargic and overslept this morning - only just managed to get the kids to school in time! I keep waking up in the middle of the night, which doesn't help - hot sweats etc... So don't know if its the rads that are making me tired, the aftermath of the chemo, menopausal symptoms or just general busy busy of life during the run up to Christmas! Probably a combination of it all! I feel very lucky that I don't have to drive too far to get to the hospital, like many of you do. Sending you lots of best wishes and hoping all your journeys are straight forward, with a parking space at the end!
bye for now, from a very tired tomato xxx
morning all dec ladies,start of wk 3 today only boosters next wk,so far so good am using cream twice a day .am very fair so am a bit red under my boob and my nipple is a bit tender will mention it to the nurses today.hair is starting to grow back great on top but the sides need to catch up!!!!!!!.
good luck annew sure it will go great,hope you dont have far to get to the hospital
mazzalou you must be having less than me i wonder how they work it all out as to how meny people get still must be great to nearly be done hope it goes ok for you this wk.
feel a bit tired after rads but that is because it takes 1hr or maybe longer to get there always running late appointment is @4 so normally out of there by 5 then have to drive home.still nearly done
take care all
The tiredness started with me about 2 weeks after rads finished, felt great during treatment, had energy felt a little tired because spent a lot of time travelling backwards and forwards to hospital (in another town). Around 2 weeks later was absolutely exhausted could sleep at the drop of a hat, was having nap in afternoon then going to bed around 9 each night and sleeping right through. This lasted about 1 week, around 10 days later was back to kinda normal!! hope this helps, xx
Ive read on here that some people seem to sail through rads with no real problems and others get very tired although this can hit you towards the end of treatment or after the rads have finished.
Hope it continues to go well for you - I start again on the 12th
So far so good for me too and I have only 4 more to go. Like you, I also have a 35 minute to the hospital, but make sure I get there at least an hour early to beat the visiting time parking situation, so most of the time is spent waiting around whilst the treatment is on time and a case of 'in and out'. I feel fine so far, and was told yesterday after 11 sessions that my skin is looking fine as they keep a check on it at my hospital so will keep slapping on the aqueous cream for a couple of weeks after treatment finishes too.
We are all different in how we react to the treatment so let's hope that we are both very lucky and escape the fatigue that is supposed to be one of the side-effects of radiotherapy.
I am somewhat confused as to why we are told to rest/take it easy/ will feel tired etc - having had 5 days of treatment this week. Most days appts are on time though yesterday was over an hour late. No side effects yet as far as I can tell - should I be expecting them in the next 3 weeks? Takes 45 mins to drive to hospital and 30 mins to fight for a parking space, so basically my mornings taken care of - but a small price to pay! I can manage this even well past retirement and looking after 2 toddler grandchildren in afternoons. BUT I keep getting told 'to take it easy/put feet up etc etc does it really get worse/more difficult to cope with as time goes on? Compared to all the waiting for results beforehand this seems far less stressful.
I was very nervous beforehand, its just the fear of the unknown but please don't waste energy worrying about rads, it really is a breeze. I am very lucky my hospital is 10 minutes away. My appointment this morning was 8.40 and I was back home by 9.05, in and out with no problem and with it being so early, no backlog to worry about and also lots of parking around the hospital. Obviously next week will be a longer haul with 5 days of rads but I keep talking to my boob and telling it to behave itself and not to get sore. I didn't have to have any scans. Keep slapping on aqueous cream and good luck
I have not posted on this thread for a while as I still have not begun my RADS, they begin on 13th December, I have now had my CT and Tats, can hardly see those, so small. I was not told anything at all at this appointment, but it was at a different hospital to the one I will be having my RADS, perhaps that is why. I have taken advice from here, as noone has told me do anything! Am using Aqueous cream daily at least twice, details on the leaflets do mention this cream so feel safe in using it.
- hi buddy, lucky you, you are now on your way, I am a bit apprehensive as you were, so am watching your posts to see how you do, keep on posting so that I know what to expect! Now have an appointment for Dexta scan (or something) bone density as I understand, this is next Wed (7th), should be no problem as far as I can see.
Interested to see your comment on an advent calendar for your kids, I have been given one from a dear friend, she told me to open one door each day when I return from the RADS, something to look forward to as they all have lovely chocolates in them. Thought this was a lovely idea - can't wait!
Is anyone on here on Letrozole??
I started this two weeks befor my op as part of a Trial, and have now been told I will just continue with it for the 5 years, so far no sign of any SE but need to have my hair permed soon and wonder if anyone on here knows if that is a good idea when on this particular treatment as it does say that the hair can 'thin' a bit. My hairdresser suggests that I go ahead but use a lighter perm, that seems a god idea to me, but any comments would be welcome from anyone who knows.
Congratulations Cherrytom and Sunshine on having your 1st rad in the bag now, and all that worrying for nothing as I guess that it was 'a piece of cake' for you both today.
Don't forget to keep slapping on that aqueous cream and before you know it all 15 will be 'done and dusted'!
It's definitely has been one of those years alright, so I am wishing you all, not only a very merry Christmas, but good health for us all and a much, much better 2012 than 2011 proved to be.
Hello all you december lot and thank you very much for your good wishes!
Rads number 1 out of the way, all seemed to go well. Like sunshine said "14 to go". It won't be long until we'll all be posting like ventura and be finished with it all. Can't believe you've had so many rads Queenie and Mazzalou, these days just keep on passing!
I'm looking at the childrens advent calendars and thinking how many doors will be open when the rads finish - it will nearly be Christmas! Went up to our local church with my eldest childs school class today for a Christmas story trail. It was brilliantly done and I feel lucky that I have such a great celebration with my family to look forward to at the end of all this yucky stuff. It's been one of those years alright!!! I know it's a bit early, but seeing as it is now December
"Merry Christmas" to you all xxx
Tomorrow i will be having my last rad treatment! Yippeeee!!! I've done 5 weeks in total and this last week have become very sore especially under breast in fold. Keep using the creams ladies and if it starts getting itchy and sore tell them and they will give you hydrocortizone cream. Listern to your body if you feel tired and want to rest do so look after you! I hope all goes well for you December RADS ladies.
All the best Ladies Heather xxx
I am having 15 + 5 boosts, it was explained to me that the boosts are just to the immediate area where the cancer was, the other 15 are to the whole breast. I dont know why some of us seem to have the boosts and others dont.
Thanks for your thoughts everyone, well one down 14 to go. Can anyone tell me what the boosters are for. I have just been told I am having 15 treatments but I notice some people have boosters. The treatment was absolutely fine, I just hope now my skin behaves itself and I really don't like not being able to use deodorant. I feel as though I smell no matter how many times I wash.
queenie, I am on Tamoxifen, have been for about 7 weeks. So far I haven't had any SE's but wonder if there will be a gradual build up in the body. Hope not.
morning sunshine and cherrytom
will also be thinking of you both once you get the first out of the way you both will feel better.all i can say so far is it`s ok very quick.ive got 2 more wks after this so nearly half way through.
amber i think we will be finshing around the same time my last one 16 dec.(yippee)
am on tomixfen so far so good(fingers crossed)anybody else on said tabs
Hi Sunshine and Cherrytom
Of course you will both be fine and I'll be thinking of you tomorrow when I have my 10th - just 5 more to go after this one
Just lie there with a big smile on your face for the camera and say 'cheese'!
I have got my first day of rads tomorrow, I am a little bit apprehensive but I am sure once I get one under my belt the rest will be a piece of cake. As for the tamoxifen, I have been on it for about 2 months now and touch wood so far no side effects.
Sorry you had such a bad experience amber.
I've just had my third set of rads, and will be finishing in week before Christmas. It was a total nightmare until today - the planning session didn't plan correctly, then they had to re-plan me, then when they finally got me started they couldn't get me lined up on any of the markers of either Planning session...I spent 3 hrs one day being measured....and a solid hour yesterday stuck in one position before I was allowed to move. Very painful.
...so I had to tell them more detail on how to work with me (I'm disabled - autism, spinal scoliosis, sensory issues etc) and today they managed to get me lined up within seconds and done within a few minutes. It does help to read the notes about patients and ask them questions on what works and work with them.
morning all,second wk of rads for me,started taking tamozifen the first day of rads they will let you know when to start.(lovely gown you have to wear(Ha ha)they are happy to answer ang duestions you might have also you will get to see the consoltant half way through.
keep using the cream and doing the exercises and you will all be fine
Why not ask them to write things down for you then, or take a pen and pad with you and do it yourself and ask them to explain things if you are unsure of anything? I'm sure that they won't mind either option, but you may just have to ask for what you want rather than feel overwhelmed by it all. There is such a lot of information to take in all at once, and, often, you think of questions after the meetings.
At my very 1st apppointment with my oncologist I was given a written record of everything that I had been told in terms of what was found in terms of size, grade, sensitivity, lymph nodes clear, what treatment I would be having in terms of chemo, rads, herceptin, the possible side effects of my chemo drugs and herceptin and how they would be administered to me, as well as details of the persephone trials for herceptin that I could volunteer to take part in. I have found this extremely helpful to have and refer to as I have progressed through my treatment.
Sorry but I can't help you with the tamoxifen question though as I won't be having it but I'm sure some of the others will know the answer.
As for the radiotherapy, yes you are getting yourself worked up for nothing so stop worrying and keep smiling!
well your posts have made me feel better sounds like I am getting worked up about nothing really, Suppose it is the unknown that scares me, good to get help from you ladies who have been through it thank you
I know I have got to start taking tamoxifen for 5 years, do you start taking them after treatment? or during?
If they give me a choice I would like to start it after RADS because I don't want to overload my body but may be they won't give me a choice. They did mention tamoxifen but can't remember all the details.
You know what I really get fed up of lack of information from professional they seem to have me on a drip feed, I really wish they would just write everything down when you see them instead of having to rely on my memory, because at the moment it just doesn't work
Hi everyone ,I've had 3 out of 20 rads . Wish i got music played . The radiotherapy is not too bad at all up to now the problem i have had is with my shoulder.On my first day the planning hadn't gone quite as well as expected and i was laid ages with my arm above my head and ended up with a really painful shoulder . my arm and my hand went numb. obviously thats not gonna happen to 99 percent of people i think i was just unlucky ,but i too got told to start doing my exercises again and was given tablets to ease the pain.
Trust me to be awkward !! the rads themselves were fine so don't worry girls.you are hardly on your own at all xx
I get music played to me whilst in the treatment room anyway, but the actual treatment when you are by yourself is minimal. Most of the time the radiologists are with you making sure that you are positioned correctly for your treatment.
Please don't be anxious - there's nothing to it and you'll be fine. Just lie there with a big grin on your face!
sun flower,there`s no need to take a cd player in as they play the radio in my hospital.also your not in there very long.2 zaps each side all do and dusted in about 10 mins.the longest time is getting you into position.keep up with the cream all over boob,neck,chest.keep doing the exercises