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Anyone starting radiotherapy May 2014

100 REPLIES 100
Paula40
Member

Re: Anyone starting radiotherapy May 2014

Thanks Jaye 🙂
Jaye
Member

Re: Anyone starting radiotherapy May 2014

Hi Paula

 

Good to hear you are underway with your rads, hope all goes ok.

 

I pretty much sailed through until the last few when I was a little sore but not too bad really.

 

You may have seen me having a moan on here but I think we all use the forum to offload our niggles. lol

 

Good luck

 

Jaye x

Jaye
Member

Re: Anyone starting radiotherapy May 2014

Hi Keeks and Kathy thanks for your replies it really helps.

 

 You are both right - a lot of it is emotional and also trying to do too much too soon.

 

Trying to take it easy for a little while instead of trying to catch up on things that haven't been done, it can all wait.

 

Jaye x

Paula40
Member

Re: Anyone starting radiotherapy May 2014

Hello ladies
Thank you for posting how you feel after treatment. I'm on my 4th session of 15 and is good to hear what to expect
Take care
Paula
kathy03
Member

Re: Anyone starting radiotherapy May 2014

Hi Jaye

 

I think we run on automatic pilot whilst going every day for rads then it can hit when it's finished. My radiotherapy nurse told me it's emotional tiredness as well as physical. She explained that it's been a busy time with surgery, oncology appointments, chemo (if you've had that) and then rads. All of a sudden it's finished and apart from a follow up appointment with oncologist it's all stopped and you're left with your emotions.

 

I finished on 19th May and felt really strange and drained. It's only now I feel I'm getting back to some sort of normality although not running around like crazy as I usually do. You've only just finished treatment so be kind to yourself, it'll take a little while but you'll get there. I think you probably did too much yesterday. Put your feet up and try to relax.

 

Take care

Kathy x

 

keeks
Member

Re: Anyone starting radiotherapy May 2014

Hi Jaye

 

my tiredness got worse after treatment finished. But the nurse warned me it would for 3-4 weeks.

 

my main problem was all the stuff that needed done. ignored during treatment but I can't ignore it sitting at home. You just have to pace yourself. Rest between tasks.  Do things you enjoy. Going out for lunch is better than cleaning.   I am getting stronger each day.

 

Keeks

Jaye
Member

Re: Anyone starting radiotherapy May 2014

Hi all,

 

Hope everyone is doing ok.

 

Did anyone find that the tiredness kicked in more after you had finished rads?  I had last rad on Tuesday so it's only 3 days since I finished but yesterday and today I feel exhausted, worse than I felt since I started rads. It could be that I did too much on Wednesday as I tried to catch up on cleaning and a bit of gardening.

 

Hopefully it will pass.

 

Jaye x

Jaye
Member

Re: Anyone starting radiotherapy May 2014

Hi

 

Yes, I quite expected to get a 5 minute chat with a nurse or at the least, a leaflet. It's a big hospital with 5 radiotherapy machines but would have thought they could be a little more caring.  I should get the copy letter in a week or two that is sent to my dr so perhaps that will give me an idea of when I next see someone but I think the oncologist said (saw him briefly at the clinic a week ago) I will see my breast surgeon a year from my op.

 

Jaye x

 

keeks
Member

Re: Anyone starting radiotherapy May 2014

Hi Jaye

thats a bit harsh. At my hospital you see the nurse at your last (or in my case second last) appointment.

 

she explained what to expect, gave me a handout with all the info including phone numbers, offered me a tube of cream, and said I would get an appointment 6 to 8 weeks. I have already recieved my letter. Appointment end of this month.  The lady I travelled with has also had problems but both of us were advised it might happen. So it's easier. 

 

different hospitals seem to have very different systems. 

 

Take care

 

Keeks

Jaye
Member

Re: Anyone starting radiotherapy May 2014

Hi Keeks

 

Thanks for the advice, I am so glad I joined this forum it's so good to hear from others going through the same at each stage of our journey.

 

Yes it was so strange to leave there for the last time.   The nurse just said, 'your last session, keep creaming' and that was it.   They don't even tell you that the rads keep working for a time after you've finished, I found that out by reading on here.

 

I'm not even sure when I go back to see breast surgeon, I imagine I will get a letter at some stage

 

Hope everyone is ok, and keep posting!

 

Jaye x

 

 

keeks
Member

Re: Anyone starting radiotherapy May 2014

Hi Jaye

 

yippeeee that's it finished.

 

I know what you mean. My last day was chaos, machine problems, loads waiting. I got off the bed, dressed and walked out. Felt very strange. 

 

I felt strange that you go from the radiographers checking you every day to nothing. I had a fungal infection during treatment and they noticed it before I did and treated it. Very reassuring.  

 

Last week the scar under my arm gave me problems, I was in a bit of a panic, bc nurse was in a clinic.

 

when I phoned the doctors they asked if it was an emergency and I just didn't know. When I mentioned I had just finished radiotherapy the doctor phoned me within the hour. if you have any problems don't leave it. 

 

Be good to yourself, take it easy and just enjoy the fact that you did it, it's finished, 

 

Keeks

Jaye
Member

Re: Anyone starting radiotherapy May 2014

Hi Keeks

 

Hope you are recovering from your rads now.

 

I was going to post tonight - I had my last rad this morning.

 

Been a bit sore since Friday and have a good suntan on my boob but not too bad.  Putting cream in the fridge now.

 

It felt a bit strange walking out of there today and knowing I had finished.  

 

Jaye x

 

 

keeks
Member

Re: Anyone starting radiotherapy May 2014

Hi Jaye

 

I just wondered how you are doing? Are you finished your treatment?

 

Keeks

LG24
Member

Re: Anyone starting radiotherapy May 2014

Thanks for sharing how you are all feeling it really helps to know you are not alone or going mad. At least we all have the weekend off.

Take Care xx
kathy03
Member

Re: Anyone starting radiotherapy May 2014

Hi Jaye

 

The radiotherapy nurse told me the tiredness can also be emotional and all we've been through is bound to have an effect on how we feel, especially as you come to the end of your treatment. I don't seem to have much energy at the moment which is frustrating as I lead a very active life so understand why you can't settle. I'm just trying to go with the flow and keep telling myself it won't last. 

 

You've nearly finished your radiotherapy so you won't be making that daily journey. As Keeks has said going for a little walk may help, I find it does.

 

Take care

Kathy

Jaye
Member

Re: Anyone starting radiotherapy May 2014

Hi all

 

My tiredness seems to have kicked in the last couple of days - I do wonder if it's the stress of it all also.  I don't sleep very well either, I wake in the night and then can't get back to sleep.

 

I'm just back from my treatment - really felt tired this morning and didn't want to go, I felt exhausted but back now and tv on.   So glad it's Friday as I only have 2 more treatments to go to next week.

 

Really wish I could relax, I find myself getting up and down from the settee every few minutes to do something - I'm so used to being on the go all the time.

 

Jaye x

keeks
Member

Re: Anyone starting radiotherapy May 2014

Hi LG24

 

sorry to hear you are starting to feel the effects, my tiredness is so difficult to explain, it's not a sleepy tiredness, so I can't just take a nap. It's more like I just cant be bothered. Unfortunately it also affects me emotionally.  I get irritated easily, anoyed with things that normally wouldn't bother me. everyone is getting on my nerves.

 

I feel like I could sleep for days but still wake at stupid oclock.  I know I have limited energy so have to ration it. But a short walk every day does give me more energy. Sometimes it feels like I've been on a boat trip. Everything feels a little off centre. Or like I'm wearing someone else's glasses.

 

the good news is it will pass.

 

take care and have a great weekend

 

Keeks

LG24
Member

Re: Anyone starting radiotherapy May 2014

Hi Everyone.

Haven't posted for a while but have been reading!
Good to see that some of you have finished your rads. Hope you are all starting to feel better.
I have been ok up to yesterday when I felt exhausted and quite sad. I haven't been sleeping well. I'm tired when I go to bed but just can't go to sleep and wake up in the night and can't get back to sleep - only had 3/4 hours sleep over the last few nights. Anyone else had trouble sleeping?
Feeling more positive this morning but still got 11 treatments to go.
My skin is holding up ok but have itchy nipple and very sore under my arm. Perhaps I haven't applied as much cream as I could have. I've had 22 treatments so far so quite pleased that I don't have any blistering.

Off to a wedding this weekend, so treated my self to new shoes and bag. Retail therapy is more fun than radio!

Hope you all have a good weekend. X
kathy03
Member

Re: Anyone starting radiotherapy May 2014

Hi Jaye

 

Thanks Jaye, the burn will heal eventually, it just takes time. I was told that the radiotherapy carries on working for about 10 to 15 days after treatment ends. My burn has got worse but not everyone suffers with what's happened to me. I've got very sensitive skin so I wasn't surprised really. 

 

It's good you've nearly finished radiotherapy and hope your sore nipple doesn't get any worse. I feel a bit lacking in energy at the moment but just going with the flow as know it won't last.  

How miserable to get a parking ticket, you didn't need that after your long wait.

 

Take care and post how you're getting on.

Kathy x

 

 

kathy03
Member

Re: Anyone starting radiotherapy May 2014

Hi Angie

 

Glad you have recovered from the burn under your arm and yes my burn will heal eventually, can't wait to be able to wear deodorant under my left arm again and use shower cream other than baby stuff! Still small price to pay I suppose. It's all part of this journey to being well.

 

I hope you have a lovely holiday, I'm looking forward to getting away and doing something normal.

 

Take care 

Kathy x

Jaye
Member

Re: Anyone starting radiotherapy May 2014

Thanks for the info Keeks, it's so good to know what is normal and what to expect.   I saw the dr. yesterday but he didn't say a lot just checked my skin and asked how I was.  As far as I know I'm not seeing anybody else when I finish rads.  Perhaps the nurses will give me info when I finish.

 

He said I would see my breast surgeon a year after the op which will be March next year and then I was given an appointment for May 2016 (yes thats right, two years ahead to go back to see him, the oncologist.

 

I seem to learn more from the copy letters I receive that go to the gp - the last letter told me I was having 40Gy of rads.

 

Jaye x

keeks
Member

Re: Anyone starting radiotherapy May 2014

Hi Angie,

 

so good to hear your fine. It must be lovely to have a holiday to look forward to. That's just what I need. 

 

I love getting a cottage and it's a great area to visit. I'm sure you need a holiday, enjoy.

 

Keeks

keeks
Member

Re: Anyone starting radiotherapy May 2014

Hi jaye

 

only three to go that's great. I had a couple of days like that my longest was seven hours door to door, same as you machine problem on the nurse clinic day, but the parking ticket is a real pain.

 

I was given instructions when I finished it said expect skin to get worse 10 days to two weeks. She also said the tiredness would get worse 3 to 4 weeks before it improved. I must admit I didn't moisturise under my arm nearly as much as my breast so I think that might be making things worse.

 

hope you have a good weekend, just a few more days then it's done.

 

Keeks

Jaye
Member

Re: Anyone starting radiotherapy May 2014

Hi Keeks and Kathy

 

Really sorry to hear you are both still suffering from your burns - I hope you both heal soon and feel better.

 

I've had 12 now so only 3 to go!

 

So far so good, just a little sore around the nipple where my scar is.

 

Do you think it gets worse after you finish?   Have I got that to look forward to lol.

 

It does seem to fly by once you get past the first few treatments. 

 

I have been pretty lucky to be treated on time, give or take 20 minutes but yesterday I had my clinic appointment after my treatment.  Got there and the machine had broken down so had a long wait hence the clinic appointments were running late.   I was there for 2 and half hours and when I got out I had a parking ticket as I had parked in the street as couldn't get in the car park and parking was only allowed there until 4pm and it was 4.15pm but ha ho! worse things happen.

 

Anyone else still having rads?

 

Jaye x

Angie55
Member

Re: Anyone starting radiotherapy May 2014

Hi Kathy

 

Sorry to read that your burns are still playing you up. Mine has now gone so I am sure in time they will disappear for you as I know you have a holiday coming up soon. I am going to North York Moors in June, staying in a cottage. Really looking forward to that.

 

Take Care

Angie. X

Angie55
Member

Re: Anyone starting radiotherapy May 2014

Hi Keeks

 

Sorry to read about your infection I bet that is painful. I finished on 25th April and apart from the burn in my armpit I came through it ok. The burn has now cleared up and I am hoping that will be it. I see the oncologist on 24th July for a check up. Look after yourself and hope the infection clears up soon.

 

Take Care

Angie. X

kathy03
Member

Re: Anyone starting radiotherapy May 2014

Sorry Keeks my iPad automatically changed your name.
Kathy
kathy03
Member

Re: Anyone starting radiotherapy May 2014

Hi Meeks

 

So sorry you have an infection, I hope it clears soon. I finished 20 sessions of radiotherapy on 19th May and have a really bad burn which has blistered with more blisters popping up all the time. I haven't got an infection (was tested for one) but I can imagine how painful it must be for you as my burnt and blistered boob is bad and I don't have an infection. 

 

I hope your course of antibiotics start to work soon.

 

Take care and post how you're getting on.

Kathy

keeks
Member

Re: Anyone starting radiotherapy May 2014

Hi ladies

 

I spoke too soon, everything was going great, then the scar under my arm started to feel tight, then itchy, now burning, very swollen, so off to the doctors, I have an infection, again.

 

back on antibiotics,  with a steroid cream for the scar, I am so tired and sick of day time TV.

 

Ten days since treatment  finished. I do hope this is as bad as it gets but with my luck probably not.

 

Keeks

hopeful123
Member

Re: Anyone starting radiotherapy May 2014

Anyone experience pain in their non-cancerous breast? I started having pain in it during chemo.   I had a clear mammogram in March and can not feel any lumps but still have a weird pain.  Its like an ache and feels muscular at times...........

lylla12
Member

Re: Anyone starting radiotherapy May 2014

I started radiotheraphy last week and start my second week tomorrow there will be 15 sessions in total.  I have an amazing cream called seven 7cream that is used in hospitals in the USA and Canada and is good for radiation burns etc.You can buy it from www.helios.co.uk.  It is totally homeopathy and all natural ingredients.  

Jaye
Member

Re: Anyone starting radiotherapy May 2014

Thanks both for your replies, hope you are both healing ok

 

Think I might get some aloe vera to try at the weekend.   Bank holiday, so I have 3 days off after tomorrows treatment.

 

One of my cuts was down next to the nipple on the areola so suppose that is why that is sore first, on the scaring.

 

Bra is off most of the time now - not a problem for me as i'm fairly small busted.

 

Jaye x

keeks
Member

Re: Anyone starting radiotherapy May 2014

Glad to hear you're past halfway already Jaye.

 

the joy of the sore nipple has arrived, third week of treatment I covered mine with a cotton swab, a hankie would do, then had to take my bra off as soon as I got home.

 

always had the urge to scratch it at the worst possible time, sitting waiting, in the supermarket ,, when trying to have a conversation and lost the thread because I wanted to scratch. Keep it moisturised. I think I'm going to try the aloe vera on mine tonight it's driving me crazy.

 

you're almost finished, 

 

take care.

 

Keeks

kathy03
Member

Re: Anyone starting radiotherapy May 2014

Hi Jaye

 

Glad it all went well today but sorry to hear about your sore nipple, mine is the same and had to put a rolled up towel round my car seatbelt as it was rubbing. It's amazing what affects you! 

 

Keep posting on your progress and hope you don't get too sore.

Kathy x

Jaye
Member

Re: Anyone starting radiotherapy May 2014

Hi

 

Thanks Kathy yes it went well today thanks and it was my 8th so halfway there now and got over my little 'blip' from the other day.

 

Sore nipple now but nothing too bad and to be expected at this stage. 

 

Jaye x

kathy03
Member

Re: Anyone starting radiotherapy May 2014

Hi Jaye

 

I hope your rads appointment went better today. I found the time went quickly so hopefully it will for you too and you don't have any problems with burning.

Take care

Kathy

Jaye
Member

Re: Anyone starting radiotherapy May 2014

Thanks Kathy for the reply, I thought it was me being a wimp but I was ages in there yesterday and yes it's not the most comfortable headrest!

I can't do back bowls at the hairdressers because of my neck.

 

Oh well, I must get my positive head back on as I am nearly halfway through

 

Jaye x

kathy03
Member

Re: Anyone starting radiotherapy May 2014

Hi Jay

 

Thanks for your good wishes. Yes burn will heal eventually. I'm applying aqueous cream and hydrogel that the hospital gave me to the burns which help. 

 

I know what you mean about going on a different machine with radiographers that haven't treated you before. It happened to me when my usual machine broke down. It took the radiographers over 30 minutes before they were happy with the numbers. It was good they wanted to be accurate but it was agony on my arms. It must be hard for you if you have arthritis in your neck as the head rest is very uncomfortable.

Hope the rest of your treatment goes well.

Take care

Kathy

 

 

Jaye
Member

Re: Anyone starting radiotherapy May 2014

Hi all,

Hope everyone is doing ok

 

Kathy - Glad to hear you've finished your rads,  sorry to hear about your burns though - take care and hope it heals soon.

 

Keeks - Hope you are feeling a bit better now you've finished and don't have the travelling to do,

 

Had my 7th this morning,  Yesterdays was a late 4.30 appointment and was on a different machine.  I had got used to the girls on the usual machine and they put me at ease.  Yesterday it was two men on the new machine and not a good experience as I am a stressy person.  They man handled me into place and one told me not to wriggle  and kept pushing my head to side.  So I had a stiff neck last night as I suffer with arthritis in my neck.

Anyway I had a good talk to myself overnight but was dreading this mornings appointment.

Fortunately it was two lovely girls and made me feel better. This different machine takes longer giving the dose but I was able to ask the girl why and she explained it delivers a bit lower dose for longer but same dose overall - so put my mind at rest.

Sorry to have a moan lol

 

Hope everyone is having a good day

 

Jaye x

princessbear
Member

Re: Anyone starting radiotherapy May 2014

Hi keeks, great to hear you have finished radiotherapy. I have my appointment to see the oncologist on 30th may so hopefully will find out then when it will start. I must admit the bit I'm not looking forward to the most is travelling to and from the hospital every day.

Sounds like you just need to rest and be kind to yourself. Take care xxpb

kathy03
Member

Re: Anyone starting radiotherapy May 2014

Morning ladies

 

I finished 20 sessions of radiotherapy yesterday and am now nursing a badly burned boob. Radiographer said I was very unlucky to have such a bad reaction so those of you who are going through radiotherapy or about to have treatment it may well not happen. I know what you mean Keeks about this strange tiredness as I have this can't be bothered feeling too. The radiotherapy nurse told me yesterday that to feel emotionally tired is all part of what we're all going through. We just have to be kind to ourselves for a while.

Take care everyone and hope all goes well.

Kathy

keeks
Member

Re: Anyone starting radiotherapy May 2014

Morning ladies.

 

cant believe that's you are a third of the way jaye.  the time passes very quickly.  

 

My skin feels tight, still using my E45 and my scar seems to have healed at last. Have to say under my arm and back feels tight and I forgot to use cream there.

 

The tiredness is very strange. It's more a just can't be bothered.   I am still wearing my sports bras and cover the sensitive areas with cotton swabs so it's not touching as I was getting very itchy. 

 

So very glad its all over.

 

keeks

Jo1
Member

Re: Anyone starting radiotherapy May 2014

Good morning everyone, although I hope you're all fast asleep at the moment! Just been reading through this thread as it caught my eye. I'm not even close to my latest op yet, but luxuriating in all the support on this wonderful forum.

 

Thought I'd mention that I used aloe vera 99% from H&B right through my treatment a few years ago and nothing else was needed. I was lucky as I had no burning at all, although some of the other women did. I also live near the hospital, which is wonderful, as everyone else found the travelling to be just about the worst part. Also the parking; although you get a paper to put by the windscreen when having rads or chemo, finding a space is always terrible at the hospital.

 

Hugs to all of you going through rads at the moment.

 

 

Paula40
Member

Re: Anyone starting radiotherapy May 2014

Best wishes Keeks
Let us know how do you feeling after it
Xx
Jaye
Member

Re: Anyone starting radiotherapy May 2014

Hi Keeks

 

Great to hear you've finished your rads - bet all that travelling hasn't helped with the tiredness.

 

I have just done number 5 today so I am a third of the way.   I am lucky I don't have too far to travel, usually takes me about an hour and a half a day and some of that time is queuing for the car park.  

 

How is your skin, are you very sore?   So far I seem ok, just a little tender, but waiting for it to kick in.  Also feeling a bit tired but not sure if it's just the stress of it all catching up with me

 

All the best, take it easy now

 

Jaye x

 

 

Butterfly318
Member

Re: Anyone starting radiotherapy May 2014

Evening Keeks

 

Well done you for finising your rads.  (and the 120 mile trip each day).

 

Hope you are enjoying your evening, do take care and get plenty of rest.

 

Take Care  Gilly x

keeks
Member

Re: Anyone starting radiotherapy May 2014

Just had my last radiotherapy.

 

I am so tired, the machine broke down and so I had an hours delay, I am very glad I don't have to do the 120 mile round trip again.

 

not sure if the tiredness is travel or treatment but they told me I'll feel worse over the next 3 to 4 weeks before I feel better,  it's all very doable. But it does take it out of you.

 

to all the ladies just starting, it passes very quickly,  I can't believe that's three weeks already.

 

Keeks

Paula40
Member

Re: Anyone starting radiotherapy May 2014

Thanks keeks
keeks
Member

Re: Anyone starting radiotherapy May 2014

Hi Paula

hot weather is not a problem in Scotland. But I do find I'm more tired when I'm warm.

keeks
Jaye
Member

Re: Anyone starting radiotherapy May 2014

Second radiotherapy session done - in and out of hospital in 20 minutes. 

 

Hope everyone else is doing ok with theirs

 

Jaye x