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Starting Rads in July 2012

93 REPLIES 93
Heather5
Member

Re: Starting Rads in July 2012

Hi ladies, wonder if anyone can advise me? On Friday I had 21 out of 30 rads. I have mentioned to the onc that I keep getting back pain and pain in my right shoulder. He asked how long it had been like this and I told him i had told the surgeon about it when i had my op in June. The onc suggested I take painkillers. I have been told I have small nodules on one of my lungs. Should I be worried?
Take care everyone and hope you are all fine. x
MINI_20
Member

Re: Starting Rads in July 2012

Hi just had my 3rd rads today,so i have come on here for some good tips to help my skin,i think the aloe vere sounds good,last time i had 30 rads and it was very sore and painful.can you put the aloe vere on befor treatment,i have only haveing 15 this time,i am finding it hard doing this again,take care
Lilac51
Member

Re: Starting Rads in July 2012

Well, I'm 2 weeks post rads now so I'm hoping I'll reach my peak soon! In a way I'm pleased I've been cooking since I finished as I had no problems at all during treatment and now I feel I've got proof it's working. I've got a squarish patch of red which I'm sure is the same shape as the gel pad they used for the first 5 sessions. It's more dry and itchy than sore so I have to stop myself scratching. I gave up on aqueous cream and have been using aloe vera gel generously - maybe a bit too generously. Yesterday I thought I'd started to peel but it was a dried-on layer of the gel.
I've just got back from a four day break at the seaside. Fortunately (?) it rained a lot of the time so there wasn't much danger of adding sunburn to my other discomforts. We've got a holiday in Greece planned for mid September, then I'm going back to work. When I booked the holiday last November, just after I'd had surgery, I sort of imagined I'd be back to normal except for being a bit thinner. Instead I'm a stone heavier, my son assures me my hair looks like an old man's and a lot of the time I feel exhausted or just plain miserable. I am grateful though for all the treatment I've been given. I know I've taken it for granted but I dread to think how many thousands of pounds have been spent on me and not every woman has access to the kind of care I've been given.
Love and best wishes to everyone at whatever stage of treatment. xx

Maryland
Member

Re: Starting Rads in July 2012

That's really helpful Twinky, thanks. I finish my last of 23 rads sessions today (15 regular and 8 booster) and the skin under my breast has peeled and is sooo sore and manky!! Radiographer said it would get worse before it got better and I'm using intrasite and weird plastic dressings! Glad to have some 'real life' confirmation and reassurance that the soreness will eventually subside. Also found that bathing area (especially around nipple) in good old salt water has helped. xx

Guest user
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Re: Starting Rads in July 2012

I will be three weeks from finishing tags tomorrow. Energy levels have been very good this week but skin still healing & needing treating every day. Peeling from the armpit area so still using intrasite gel as the aqueous cream can't be used on broken skin.not so sore now. Peak soreness was 2 wks after finishing. Amazing how much you cook afterwards. I sailed through rads bit skin suffered most the 2 weeks afterwards.

Twinky x
pelma
Member

Re: Starting Rads in July 2012

hi all finished rads last wednesday iv used the aloe vera and found it to be good and heather5 i to felt hot but was like that all the way throu went to see my onc today and becouse im so sore under my boob were my scar is thy have given me flamazine to use hope this clear it up and have to go again for bone scan waitin now for appointment good luck all
foxyferret
Member

Re: Starting Rads in July 2012

GMT - When I was diagnosed in Feb I cancelled my planned cruise as I did not know what was going to happen. I finished Rads on the 9th July and the cruise departure date was the 20th July. All I can say is that I'm glad I cancelled as I would not have enjoyed it. The fatigue kicks in about two weeks post Rads, if all you're going to do is lie on a beach then maybe your holiday will do do you good, but you MAY enjoy it more if you delay it. I have not had chemo so don't know if that makes fatigue worse.

Ladies - 99.9% aloe vera is wonderful, take it with you to your appointments and apply as soon as you are done.

Good luck to you all.
Heather5
Member

Re: Starting Rads in July 2012

Hi, I have had my first session of radiotherapy today. All went well but when I have got home I feel so hot - is this normal? I thought it would take at least a week for any side effects to start.
With regard to using cream, I have been given a leaflet today which tells me to use E45 or diprobase and the part which said aqueous cream has been crossed out.
Hope everybody is keeping well.
Heather x
GMT
Volunteer
Volunteer

Re: Starting Rads in July 2012

Hi,
I had my planning meeting last week and start rads at the start of Sept, just over 2 weeks from last chemo. The radiographer said to use aqueous cream and not E45 as it had some perfume in it. I asked about aloe Vera gel and she said we recommend aqueous cream but then said' I m not supposed to say this but aloe Vera gel, the 99% stuff is good but I didn't say that!' . I will try both as I've already got aloe Vera gel.
I had thought about going on holiday the week after rads, possibly Spain or Greece, probably not too hot 25ish. Reading above posts I am now thinking this is prob not a good idea so soon. Any advice welcome.
Gaynor x

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Re: Starting Rads in July 2012

Hi Ladies,
Hope you don't mind me joining (from April chemo). DX 18.12.11 operations Jan and Feb, started chemo in April. Had my last chemo 18th July (so glad its finished) unfortunately Swindon don't do radiotherapy so was told will have to wait 5-10 wks for a letter from Bath for an appt. Had a phone call last Monday for an appt on the Wednesday! Bit of a shock as I'd arranged to go back to work phased return Tuesday and Wednesday. I'm very lucky my emploer is very understanding. Its going to be a pain of a journey took me an hour and half each way and will be 4wks 20 sessions. Now waiting for a start letter/phone call.
Really good reading your posts as I feel much more prepared (I have a list now always good) and glad to hear I've got time for the chemo tiredness to ease off before the rads tiredness kicks in.
Gentle hugs to all x
pepihorse
Member

Re: Starting Rads in July 2012

Hi LikesLilac, thanks for your reply, Yes I was surprised too when I got the appointment through - 2 days after final TAX ! I have spoken to them since, and I am having the pre-assessment and the scan on that day (will still be high on steroids!) but the actual zapping will now be just under 3 weeks from having Tax, so that sounds a bit better, would have prefferred a bit of a longer break though......... especially as I have an hour journey each way to hospital so I am going to feel really knackered!! Thinking of buying a tent and camping outside!!!!
Also, has no -one tried the Aloe Vera plant actual Gel???? I would have thought, non stabilised 100% Aloe Vera plant goo would be much better as it wouldnt have been interfered with?????? and its 100% natural, but I dont know whats best, or who to ask.
Might try it anyway, it works wonders on burns.............................
Wendy x

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Re: Starting Rads in July 2012

Hi Maryland...thanks for the helpful directions. It looks like the whole area might end up peeling!
Take care
Twinky x
pelma
Member

Re: Starting Rads in July 2012

thanks jecky will do. as it just seems to get more red and sore and my nipple is so sore and dry pam x
Jecky
Member

Re: Starting Rads in July 2012

To Pelma,
Ask your Rad doctor about Xclair cream. Is working for me.
Good Luck

Jecky
Jecky
Member

Re: Starting Rads in July 2012

Hello July and August Rads Ladies

I am 12 days into my 18 rads and am trialling a cream called Xclair instead of the standard aqueous cream. It's going well, no pink skin at all and on free prescription too. Does everyone know that prescriptions are free for 5 years after cancer has been diagnosed. Just a form to complete for the exemption card.
I found a brilliant bra = Bravado Body Silk Seamless (John Lewis) soft and supportive for bigger boobs; actually a nursing bra with pockets and removable shape pads, I put both on the same side so you can look a bit more even after WLE. I wish I had found it sooner. Nice and soft under the arm near your SNB scar.
Jecky
.
Maryland
Member

Re: Starting Rads in July 2012

Hi Twinky....I'm on rad 17 of 23 and have intrasite gel for broken skin. The radiographer told me to apply it to the area when it was completely dry twice a day. If wearing a bra, helpful to put a dressing over the gel and in the comfort of your own home to let as much air get to the area as possible!! Following tips on here, I keep all my creams in the fridge.....hope that helps a little? Xo

pelma
Member

Re: Starting Rads in July 2012

hi heather i have just finished my rads today found it ok just a pain going every day and i only had 17 found the first week my boob was fine but after that it got very red and sore i used E45 then went on to use aqueous cream which i found better also keep it in the fridge it cools ya boob down aswell im now tryin aloe vera as alot of people on here have said its better than the orther 2 it seems to cool me down more will see how it gose and twinky hope the cream you have sorts your skin out and gets u better quick pam x
Guest user
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Re: Starting Rads in July 2012

Hi Heather & welcome. Of course you can join us...the more the merrier! They do sayout helps to start pampering the skin before you start so go ahead & slap it on!

Inow have my intrasite gel for my broken skin but it came in a weird container & I have no instructions! Help....

Twinky x
Heather5
Member

Re: Starting Rads in July 2012

Hi Ladies
I have been to be marked up for starting my radiotherapy next week on 15th August. Is it ok if I join this forum or do I need to start another one. Have found it very helpful reading all your comments and advice to each other. I have adenoid cystic carcinoma in my left breast which isn't a normal type of breast cancer - it usually appears in the head and neck - as my OH and sister say, "Trust You". I am having thirty sessions of radiotherapy as this is how they usually treat the problem when it appears in a salivary gland.
It was a very strange experience today laying on the scan table, naked from the waist up with three radiographers looking at me and marking me with pen and sticking stickers on me, but I think it made me realise that something is happening to me now. Think I have been in another world for the last few months and have finally realised what's happening.
Is there any point in starting to use E45 cream before I start my treatment?
Hope everyone is ok, Heather x
foxyferret
Member

Re: Starting Rads in July 2012

So sorry to hear that Twinky, hope the creams soon sort you out and you get better quickly.
Perhaps I got off lightly?

Best wishes
Guest user
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Re: Starting Rads in July 2012

Off to the doctors this afternoon. Am 11 days from finishing rads but an area of skin at the bottom of my arm pit has broken after my shower today & tbe radiotherapy dept has e mailed thd name of the creams I need to be prescribed. Was thinking i'd got away without too much damage! Hopefully it will sort itself out soon...in the meantime I will be walking around topless with my arm raised to help the air get to it.....

Twinky x
foxyferret
Member

Re: Starting Rads in July 2012

Hi Ladies
I am now four weeks post rads and cannot agree more about keeping up or even increasing skin care.
Likeslilac - I found the aloe vera gel a lot better than aqueous , it really cools and soothes the hot and itchy feeling. Please do not do what I did and absentmindedly scratch!!
My skin gently peeled after about two weeks and is now almost back to normal. Today is the first day I have worn a bra for six weeks, a very soft one, put it on this morning to see what would happen and am going to take it off when I've finished this, have not liked going out braless at all.
Tiredness was at a peak two weeks after but am now feeling the effects less and less. I am back at my part-time job but am taking it easy and resting when at home. However I have not had chemo so you all may take a little more time time to fully recover.

Best wishes
pelma
Member

Re: Starting Rads in July 2012

hi all just got my last 2 rads to go and my breast is already so red and so hot puting cream on but dont seem to help think i will trythe aloe vera see if thats eny better xx
Lilac51
Member

Re: Starting Rads in July 2012

Hi. I'll second what Twinky says. I finished last Friday, no problems at all with my skin during treatment. I was advised to keep putting on cream and not to put on deodorant for the next 2-3 weeks. I've been very good with my skin care but my skin is starting to feel a bit hot and sore, also a bit itchy where my scar ends near my armpit. At the hospital they said the only thing they recommend is aqueous cream but I've also got some 99.9% aloe vera gel, so I'm going to try that today. I'm waiting for some more fatigue to kick in as well. xx

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Re: Starting Rads in July 2012

Hi ladies
I finished rads a week ago on Friday. Can I please just stress that you need to continue your care routine when you finish as the effects of the treatment continue for about 2 weeks afterwards. I'm definitely still cooking & feeling a bit sore now but at least my skin isn't broken.

Take care

Twinky x
Lilac51
Member

Re: Starting Rads in July 2012

Sorry can't help re aloe vera plant gel, except I know one of the ladies I had chemo with was going to use it - just a bit surprised you're having rads so soon after tax. xx

pepihorse
Member

Re: Starting Rads in July 2012

Hi, just wondering, starting Rads in a couple weeks, (pre-assessment just 2 days after Tax ! bit too soon I am thinking! o well, we will see, my question is, Aloe gel, I know you can buy it in tubes, but I have a huge aloe vera plant, which is brilliant if I burn myself, takes the sting out straight away, but do you think this plant would be better as its coming straight from the plant? clear gooey stuff inside leaves??? or should I buy the gel???
Has anyone tried the actual plant gel???
Thanks
Wendy

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Re: Starting Rads in July 2012

Hi Twinky
Just back from rads and review, I stupidly burst into tears at my review, something that normally I wouldn't do infont of anybody.
Came home phoned O H in tears,and he's - what's the matter, what's wrong with you, and couldn't understand that actually nothing is wrong it is purely a cummunalative effect of chemo,operation and now rads & tamoxifen, I do fel a bit daft, so I think that I might just blitz my house to release all of my tension.
Rant over, some tension has gone.... Lol
Anne
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Re: Starting Rads in July 2012

Hugs to Tedds & Lilac. I find it frustrating too when you tell people you have finished/ will shortly finish treatment & they seem to expect you to be'immediately 'back to normal'. Doesn't occur to them that your poor body needs time to heal. They wouldn't expect someone who had just had an operation to be instantly well so I don't know why they expect that after rads & chemo. Saw my doctor yesterday. She said 'poor you, you must be exhausted'. I was nearly in years at the sympathy & understanding! She wagged a finger at me & said not to go rushing back to work too early!

I was told the gel pad was to fool the machine that there was more body mass at the treatment site & deliver a good dose to the top skin/scar area. I had half my treatment without & then had the gel pad added on day 8. The down side is that it then affects the skin more & I didn't have any redness until the pad came into use. Apparently the scar is a danger area in terms of a recurrence.

Just trying to relax & enjoying the Olympic coverage!

Twinky x
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Re: Starting Rads in July 2012

Hi Ladies
I have one had 4 of 15 treatments, however I should really be on number 8 today and nt number 5. My lovely unit keeps moving and cancelling appointments which is really frustrating. Whether it is the rads or everything combined, I am really tearful at moment which is so not me.
I have the gel pad for all treatments so I have been told, this is evidently to protect my recon?
Have a review today, so think I will tell them how I am feeling.
I think I forgot how I thought things were going to be, as my last chemo was end of April, which seems as though it's was so long ago. Mastectomy & recon were middle of May, and now. With rads I feel as though I am right back at the beginning. Iknow I'm not, it's just the having to strip every day and feeling so undignified.
Sorry to rant, it's just family and friends are all saying oh nearly there nealy done, and here is me thinking, I have a sore boob from recon, a very sore tummy scar as the rads have antagonised that and generally I feel crap. But I smile sweetly and say, yes nearly there.... Lol
Lilac51
Member

Re: Starting Rads in July 2012

Hi. I'm almost finished; three more to go. My skin seems OK and I keep liberally applying the aqueous cream. All my toenails except the big nails have gone, and they're discoloured and detaching themselves. My fingernails are just ridged so I'm hoping I can keep them. I've noticed my chin hairs have made a triumphant return but the hair on my head is still fine and fluffy. I can also feel a shiny bald spot at the back. I'm feeling a bit down at the moment even though physically I'm not too bad. I think it's because my family expect me to be back to normal by now and I don't know what normal is any more. I'm due to go back to work at the end of September so hopefully I'll feel brighter then. Best regards to everyone. xx

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Re: Starting Rads in July 2012

Hi Everyone
Just had day 2 of not going to the hospital after finishing rads last Friday! Great to have my time back tomyself. Skin still cooking so slapping on the cream & watching lots of Olympics. there's so much on it's hard to know what to watch next so just been sticking to whatever they are showing on BBC1 & 2.

Not nice losing nails is it. Second thumb nail
Nearly off. It's a relief when it does finally detach as it's a bit sore when coming off. Looks like all the fingernails & some toe nails will go tbe same way. Grey fuzz on head getting quite thick now but not long. What appears to be happening is that the initial fluff is falling out & beinf replaced by stronger hair hence the lack of length for the time being. I'm still just wearing my baker boy hats when i go out but don't wear anything the test of the time.
Feeling a lot brighter now I'm not back & forth to the hospital butstill very tired. I must push myself though & start little walks to build up my stamina. Would like to climb the stairs again without feeling like I have the lungs of a 90 year old.

Twonky x
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Re: Starting Rads in July 2012

Hi Everyone thought I would pop in to see how your all doing. I finised my rads a week ago yesturday (15 High Port) it went well pretty painless after the experience of chemo. My skin is a bit sore this week my nipple is very tender and a funny green colour but just continueing with the cream and keeping an eye on it. I do feel tired just had a 20 day break between treatments so that hasunt helped but all in all not as bad as I expected. Going for bone scan next thursday then follow up with oncoligist to decide medication so nearl all done.
Good luck to all who are still on the road the end is in site.
Big Hugs
Linda
PS My hair is still not growing cant wait to get it back will help to get back to normal. x
poppyD
Member

Re: Starting Rads in July 2012

Hi Doodle

I have also been told I am having 25 fractions, I think i saw something whichsuggested that15 fractions are what they will be going to work to soon, i think different oncologists have different regimes. ihad lumpectomy injan and recently finished chemo doesnt it take a long time

love pops

poppyD
Member

Re: Starting Rads in July 2012

Hi Doodle

I have also been told I am having 25 fractions, I think i saw something whichsuggested that15 fractions are what they will be going to work to soon, i think different oncologists have different regimes. ihad lumpectomy injan and recently finished chemo doesnt it take a long time

Guest user
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Re: Starting Rads in July 2012

Hi well I dont think the dressing I have helped
They were sticky and so I took it off and it
Had blood on it so I might ring the dr Tom and ask
For some of the cream because it's really sore
The problem is that the radiography nurse doesn't
Work on Fridays and my bcn has not been in touch. Since jan.
Anyway I'll see how it Tom.
Thanks ladies xxx
Kellc
Member

Re: Starting Rads in July 2012

Hi Fran I finished my radiotherapy just over a week ago and my breast looked fine .
Four days after finishinf it suddenly became very sore underneath and the shin began to split my radiographer had sent a letter to my doctor explaining what to do if this happend. They prescribed flamazine cream which is used to treat burns. It soothed it immediately that was two days it still looks sore but it does not hurt.

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Re: Starting Rads in July 2012

Fran - is there a BCN who can check your sore area? Doesnt sound good to me. You could try going to the doctor or asking to see the nurset at your local surgery. You really don't want a nasty infection x

Twinky
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Re: Starting Rads in July 2012

Ooh Fran, send you a gentle hug! I have two more to go. Just starting to glow in the area. I find slapping on cream & sitting topless in front of a fan rather pleasant! Just 2 rads to go. I finish as the Olympics starts.

Went to bed with nearly departed thumbnail wrapped in a plaster. Awake to a flapping plaster & no nail....yuk! Need to play hunt the nail.

Twinky x
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Re: Starting Rads in July 2012

Hi I finished my rads last week.
This week Im really sore under my breast, I've got a dressing
On but instead of a green or yellow goo on the
Bandage it looked brown. I'm using mepilebad readings they
Stick to the skin.
Is this normal it'd still really sore and stings
Other than that I'm fine.
Any advice would be good.
Love fran
Wolsty
Member

Re: Starting Rads in July 2012

Doodles - I had mx and immediate ld flap recon on 21st June. I am starting my rads on 20th August and am also having 25. Maybe it's because of our surgery.

Jane

Ndean
Member

Re: Starting Rads in July 2012

Thanks likeslicac for saying how it has been for you. A good short sleep can be a tonic. I use a relaxation cd from the hospital every day and find that helps me as well, 1,2,3 relax is my mantra!
Hope you get though the next few weeks ok.
Lilac51
Member

Re: Starting Rads in July 2012

Hi Ndean
Like you I started rads still feeling fatigued from having chemo; last chemo treatment at the end of May. I've just finished my first week of rads and I've been OK until today, when I have to admit I felt really 'off' and so tired I just fell asleep for a couple of hours. I've perked up again now though. Perhaps it was a combination of tiredness from the rads and end-of-week-itis.

Ndean
Member

Re: Starting Rads in July 2012

Starting my radiotherapy in a couple off weeks so good to read you experiences. Am pretty fed up of chemo side effects so pleased to hear that this may not be so bad, most worried about the tiredness as am fatigued now.y
JCJ
Member

Re: Starting Rads in July 2012

Doodles if you look back to earlier threads - think it's either starting rads in February or it may be March, there are some ladies on there who had 20 or 25 sessions. I don't know why. I assumed it must be due to the hospital and/or the machines. Maybe you get a smaller 'dose'?? The rads info I was given at dx stated 3 to 5 weeks radio therapy.
Doodles123
Member

Re: Starting Rads in July 2012

Hi everyone. I am due to start Rads on the 7th of August so it has been interesting reading your posts. The thing that's puzzling me is that I've to have 25 sessions? I had mx with immediate recon on 29th May. I noticed no one else mentioned 25 sessions and wondered if anyone could shed any light on this for me??

Lilac51
Member

Re: Starting Rads in July 2012

Hi
I've just had my 4th out of 15 treatments and so far so good. I' only need one more with the gel pad and my skin is OK, just feels a little warm at the moment. I've been applying aqueous cream liberally. I only know at the end of each session what time my next appointment will be; so far they've ranged between 12.30 and 3.30pm. I had a very long wait yesterday but it was partly my fault. I've been used to waiting for ages to see the consultant at my own hospital and I just assumed this was what was happening at New Cross. Anyway, after nearly 2 hours I asked the receptionist what was happening as I needed to get home to collect my son from the school coach. It turned out, when I first turned up at the reception desk, the receptionist hadn't 'queued me in' on the computer so the radiology staff hadn't known I was there. I felt such a fool for waiting so long. All went well today and I managed to travel to the hospital, have my treatment and get back home, by bus, in under two hours.

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Re: Starting Rads in July 2012

Hi Ladies
9 of 15 completed today & first time with the gel pad which makes the machine treat the area close to the skin surface so that my MX scar gets a good dose. The downside is the skin is more likely to get a bit tender or sore now. Been very good so far& just been washing with Simple soap ( bar not gel) & moisturising with aqueous cream three times aday. Tend to have a snooze in tbe afternoon too. Saw my Onc whlst I was there for a quick catch up. He says the tiredness will be around for a while after thd treatment & can last weeks or months but intermittently. He said best advice is to rest when you come over tired. Have a quick nap & you'll soon feel better ( not sure how you cope with this if you're back at work lol...).
Hopeeveryone else is oK. So nice to not be having chemo anymore!

Twinky x
Kellc
Member

Re: Starting Rads in July 2012

Finished 15 sessions today feeling ok but a little tired.
Had my treatment at the new Endeavour Unit at James Cook Hospital and the staff were excellent.
I used hospital transport and if I was ealy or late they fit me in for my appointment thay said that I should not worry about what time I would arrive.

I had the same staff every day and it was at the same time every day so they made it as easy and as pleasant as possible

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Re: Starting Rads in July 2012

Now completed 12 out of my 15 sessions and so far so good. Skin is ok just have slight rib pain but only at night when i lay on that side. The worst part is the hospital keep changing my appointment time which is a right pain. Had a review on Friday last week and they said they would put a note to say dont change my appointment time by more that 1/2 hour. Went in today and they changed my last appointment by 2 hours - dont know why i bothered mentioning it. Braved the dentist today and only need a couple of fillings so onwards and upwards. Hair coming through nicely now - would just like it to be thicker so that i can dye it in time to go back to work in September hopefully. Hope all you ladies are coping ok with rads. xx
JAYNE