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starting rads in jan

116 REPLIES 116
sarahlousie
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Re: starting rads in jan

Hi Sarah,

So glad your wound is much better, mine is also much better, my skin is starting to peel slightly like a really bad suntan and looks patchy but I think I was very lucky not too of had such a bad time with it. My apetite has come back and the fatigue has gone, also not so teary as I was think my brain/body is getting used to the tamoxifen finally!!!

Take care
love and light
sarahlouise xx

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Re: starting rads in jan

Update of wound.
I was right that my wound seemed to heal really quickly and I started putting aloe Vera on it instead of the dressings. Now it all seems a distant memory. I have a square of darker skin, but otherwise all is healed. My appetite is back yo normal and over the past few weeks I have been able to shake off the rads tiredness hangover.
To any ladies about to begin rads, don't worry. It's all doable. I had quite severe skin breakdown but the dressings team were on hand and I was looked after very well. It looked a lot worse than it felt..

X Sarah

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Re: starting rads in jan

Hi all.
Burns now noticeably better. Soon be able to stop dressings which will be a relief! I am thinking of going back to aqueous cream Monday. Hope you continue to feel good, Cosmic. I am not quite so tired now. Hurrah!
X sarah

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Re: starting rads in jan

Hi Sarah so very pleased for you and glad things are looking up xx
Now 5 down and 20 to go for me but feel pretty good apart from a bit tired - nice to have 2 days off and hoping for some snow!!

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Re: starting rads in jan

I think things are now looking better. I can see that my burns do not look quite so livid. My appetite is back and I have a lot more energy. Light at the end of the tunnel!
X Sarah

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Re: starting rads in jan

Hi Cosmic and all

I'm also v tired after only 3 days - it comes on about an hour after the zapping and I have to sleep. I have evening appts so not too bad for dozing off afterwards. Was told tiredness wd kick in during wk 2 - hope it doesn't just get worse!

Boob sore after the treatment but painkillers sort this ok for me.

3 weeks seem an awfully long time to do this now. But just need to remember my fave quote - 'the only way out is thru' (Helen Keller)

C x

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Re: starting rads in jan

Hi all
Yes the MUGA is a heart scan. Have one every three months. Going on perception soon so need heart check for that. Cosmic, I know what you mean about tiredness. When we were away I had a nice lunch at our favourite pub, probably there a couple of hours. Wandered 100 yds or so down to a very nice greengrocers and got chatting to some friends when suddenly I had to sit down. Random! I feel a lot more confidant about my skin now the wonderful Woowoo ( my dressings nurse) has seen it.
Sarahlouise, glad your scan was fine.

Funny to think I was in the next door county in Norfolk last week. I love the quotation.

Wishing everyone happy zapping and recovery

X Sarah

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Re: starting rads in jan

Everyone seems a bit happier today which is great.
I came home after zap then went shopping with my daughter - got half way round Brantano then whack had to look for a chair like you see the old men sitting for their wives in M & S!! Felt so tired but can't believe this is from only 3 days - think it is emotional tiredness. Anyway came home and had a 1 1/2 hour sleep!!
Much better now and practised what I preached and had a peanut butter and banana sarnie (YUM!)
Good luck to all for tomorrow glad Chicci your redness has reduced - sorry about radio 2 - what a bummer!! however Ed is continually singing the same song to me so he may have to go!
Sarah Louise so pleased all went well on the heart scan - that is really great.
Sarah - hope you wake up tomorrow and skin feeling a level up xx - is the MUGA scan the heart scan? - how often do you have to have it?
Looks like the sunshine went across the country - here in Suffolk it was glorious
In the words of one of my heros Earnest Shackleton "Fortitudine Vincimus" (by endurance we conquer) xxx

sarahlousie
Member

Re: starting rads in jan

Hi Ladies,

Hope you are all coping well, once you start this treatment the time seems to go by very quickly.
My skin is still red and sore but I am continually putting aloe gel on and that seems to keep it cool and softens the skin, my skin keeps feeling really tight especially in the mornings, so have to do some stretching exercises before I start my day. Today I had my 3 monthly heart scan happily they told me that everything heart wise is fine :0).

Sarah - So sorry your still suffering with this, as Chicci has said crying is good its a release get rid of all those pent up feelings, I take a vit c supplement daily and I'm sure its kept all the colds/flu at bay, and I would not be without my paracetamol they got me through the rads.

Cosmic - Thanks for the reminder about pumpkin seeds and peanut butter I do take a selenium supplement with added zinc daily but love peanut butter so shall take any excuse to have it on toast.

Hope the weather has been sunny and nice where you are its been a cracking day down here in devon.
Sending love and light to all
sarahlousie xx

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Re: starting rads in jan

Hi sarah

Crying is good - just let it out then give yourself lots of treats. (I think we should all have lots of treats at the mo - mine are those little packs of kids' chocolate buttons and red wine - yum)

Are you drinking lots of water, Sarah? (I add high dose vit c tabs which help to fight infection - raspberry flavour my fave). Hang in there and take one day at a time (hug))

They said my redness was normal (!) and it's not so bad now I've put plenty of cream on.

Cosmic - I get radio 2 I think - radiographers make d*mn sure they are out of the room before it comes on - they only look about 23 so can't cope with that sort of music 🙂

C x

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Re: starting rads in jan

Peanut butter is a great idea. I had forgotten about that. Tears are now dry. Home alone and messing about on my iPad.
X Sarah

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Re: starting rads in jan

Hi Sarah - hope those tears are dry now - its a lovely sunny day here and hope it is with you too xx Keep your chin up - you will get through this.
Re the calories -it would be great for you to munch on healthy stuff like pumpkin seeds, peanut butter on wholemeal bread etc as snacks between your meals. These contain a lot of zinc and (as do oysters - did you get through any of those when you were by the sea??!!) and will help with to repair your skin and improving your immune system.
Hope Chicci's redness has gone down - and your week is improving
Went for no.3 today but feeling better about things today - doesn't a sunny day help?
lots of love xxx

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Re: starting rads in jan

Hi
Just seen dressings nurse. Armed with new bandages and paraffin gauze. She says it's healing well, I think it looks hideous. Tears!!!!! I have been told to take in lots of calories and rest. Appetite a little better now
How's everyone else?
Chicci what did they say about your redness?

X sarah

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Re: starting rads in jan

Hi all

Chicci very sorry to hear you are red so soon. As cosmic says, keep putting the cream on
Cosmic, thanks for asking. More skin peeled away this morning. I am now at home and shall see the nurse tomorrow for a quick check up. I shall prop ably pick up some more dressings. I was supposed to have a MUGA scan tomorrow but my breast nurse said no way cos of the sticky things they put on your chest. It's next Wednesday instead. I shall be happy if I escape any infection. Paracetemol is my best friend 8-). I think I have just been unlucky. I am off to bench land now( another thread)

Hope everyone is fine for their treatments this week

X Sarah

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Re: starting rads in jan

Sorry to hear you are getting redness Chicci - keep putting on the aqueous cream /aloe vera - I think Cackles said she was taking aspirin to help? My 2nd zap today went ok - I was much more composed and coped without one tear which was good, had more biro marks and something taped to me to check the radioactive levels at the surface of my skin. Ed Sheeran still playing happily in the background.
Sarah are you feeling better today? Hope so
xx Good luck all xx

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Re: starting rads in jan

Hi Cosmic and all other ladies

Had my first zapping yesterday and have a thick red stripe across the front of my boob already. Will mention it to them today. Surely it's a bit soon to go red?!?

So sorry to hear that several of us are having a really cr*p time with rads.

C x

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Re: starting rads in jan

Will do. I am going to curl up with my kindle. Reading a historical / present day thingy where you are taken back and firth in time. Pure escapism.
Late bed for me tonight. Too much junk tv.
X sarah

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Re: starting rads in jan

No you haven't - this is just something that has to be dealt with one way or another - now 'flake out' and get some zzzs! x

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Re: starting rads in jan

Thanks cosmic

I have turned into a bit of a whinger I think. I shall be glad when all the flakey bits have done their stuff.
X Sarah

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Re: starting rads in jan

Hi Sarah
Glad you are feeling a bit brighter - good old mother nature she does sort things out sometimes!! Hope your skin is a bit more comfortable in the morning and hope you had a glass of wine with that soup!! xx

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Re: starting rads in jan

Hi
The day got better. Sat by the sea, well looking at it through the pub window, a bowl of soup has helped to lift my mood. I hate looking at my burnt bits and am finding changing the dressings a bit of an ordeal. I didn't dare bathe the area today as skin was pealing off. Being away from home makes one a little cautious.
X Sarah

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Re: starting rads in jan

Dear toffeelumpybumpy

I also feel a bit cross. I am having to dress my burns too. End of week 2 of rads I went to dressings nurse. I have been given gel and paraffin gauze. Tomorrow will be it's peak or so I'm told, roughly 12 days after zap to that area. It looks absolutely hideous. I have been away at the seaside and it has spoilt my time away. I am also very tired. I am having trouble with my appetite too. I think this will improve when it looks like I am healing. I am going to see the nurse on Wednesday when I get home to check up on it for me. This is definitely not a walk in the park. I have found it worse than chemo in it's after effects. Perhaps I am just odd ...........

X Sarah

BrainyBlonde
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Re: starting rads in jan

I'm now an imposter in this thread as they cancelled my appointments for today and tomorrow just as I was heading out of the door due to a power failure! I will now start on Wednesday 1st Feb! Grrrrr.

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Re: starting rads in jan

Hi All,

I finished my rads last monday....

Driving myself there and back (40 mile round trip) really wasn't a problem.

However - and here's the bad bit and a cautionary tale for those larger breasted women (i'm a 38F)...it hurts!

The skin on the underside of my breast burst open during week 2 so had to clean and dress it every day.
During week 3 the burns spread to under my arm pit not far from the SNB scar - now a week later I am having to clean and dress that area as the skin is starting to tear there now.
I can't move my arm in the mornings because the burnt area tightens up.
My whole breast is swollen - haven't been able to wear a normal bra for 3 weeks now.

It is all bearable but I suppose i'm annoyed because it wasn't supposed to be this bad!

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Re: starting rads in jan

Zap no 1 went well except I made a bit of a fool of myself before hand - but the upside is my very own sexy gown I get to keep! They play Ed Sheeran in the background during the zapping - think I may not be so fond of him after a couple of weeks!! Felt a slight warming afterwards for about half an hour but rather like a quick nip of ginger wine only in the wrong place!! Hope all went well to the other day 1 ladies, and big hugs to everyone as well xx

sarahlousie
Member

Re: starting rads in jan

Hi Ladies,

I get my 99.9% aloe gel from holland and barratt and I have an aloe plant and cut the leaves off one by one slit them down the middle open them up like a book and pop that on top, it really is marvelous for healing burns and sore skin. Another useful tip is too keep the gel in a cool cupboard or if your hot flushes are ridiculous like mine are I keep my aloe in the fridge, very very cooling when you put it on.
Like Cackles has said keep doing your exercises my skin got kinda tight so I ended doing quite a lot of stretching exercises to warm myself up before getting zapped. Hope this helps.
Love and light to all
sarahlousie xxx

Cackles
Member

Re: starting rads in jan

Evening girls well two weeks after DXT the Asprin seems to continue to keep the redness away. I am only slightly ....if you look hard....pink.
I drove myself the twelve miles cross country to the Churchill in Oxford every day but two. The first and the one when I had an oncologist appointment. Driving really was no problem. I had lots of friends wanting to set up a rota but it truely wasn't needed. In fact I don't feel tired at all. Perhaps it was having Tax that makes everything else seem easy.
The most important thing with Radiotherapy is to do your exercises, it does get stiffer as time goes on.i played golf a couple of times on my last week and that was a mistake....too soon. And I ended up a bit swollen. It has gone down a bit now.
Take care.
Cackles

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Re: starting rads in jan

Hi ladies
Sarah-Louise - thanks so much for your thoughts and kind words. I said to my husband the other day that looking back I feel a bit like a pinball being pitched around but as you say it is a blip and time passes. Just been out for dinner with some sweet friends and had a laugh about being glowing as from tomorrow - well you have got to laugh really!! You have been so sweet with your thoughts - I really appreciate it and hope that things improve with your skin - I read a journal article recently about sunburn and vitamin E capsules are really effective - has anyone heard anything about this? - just wondering if it would help you as it is supposed to really reduce the burn effects.
Jan - Good luck for your first zap tomorrow - mine is at 9.45 so will be good to get this first one done (thoughts to Chicci too) - hope all goes well with your drive tomorrow.
Karen - you can get aloe vera at chemists, Boots etc - usually found by suncreams
It is so good to have support like -v does my heart good!! Sleep well all Maddy xx

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Re: starting rads in jan

Hi ladies, well first week over with. Boob looking ok but my nipple seems errect, is this normal? Also just read previous posts, where do I buy this aloe vera gel? Iv been using aqueous cream but iv also thrown out everything with parabens in it and didn't know it had them in it. I don't suppose it makes a difference but I'm one of they people that believes everything I read, lol. Hope everyone is keeping well, karen xx

BrainyBlonde
Member

Re: starting rads in jan

Hi,

I'm starting rads tomorrow and although people have offered to come with me for the 80 mile round trip most days, I am planning on driving myself some of the time. I think they say that you can feel quite tired and some people suffer soreness more than others but I quite like the idea of being a little independent. Also there is real difficulty parking at the hospital so if someone can take the car and park up that might help too.

Jan

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Re: starting rads in jan

Depends on how many you have Twinky. I think you should be ok for first two weeks. Some people are fine and don't really experience fatigue until it's over. My hospital offers transport for those with difficulty. Perhaps you could arrange something like that with a view to cancelling it if you feel you don't need it. if your treatment is at the same place that you had your mx then you shouldn't have much waiting about to do
X Sarah

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Re: starting rads in jan

Hi Ladies

Can I ask one of those silly questions (that we're allowed to ask in here as no question is too silly). Will I be able to drive myself to the hospital 1 hour each way) when I have RADS? Hubby works away during the week & have no one who doesn't work full time available to help out.

Twinky

sarahlousie
Member

Re: starting rads in jan

Hi Cosmic,

Thanks for the well wishes, glad the typo gave you a giggle. Going back to your earlier post it is the unknown that we are afraid of, none of us have had to experience this nightmare so its such a shock to the system and by the time you get to the rads you feel worn out with it all, my radiographer said that too me on my last session, he told me not to be to hard on myself and just take things easy, which is exactly what I'm gonna do, it really is'nt as bad as you think its gonna be and its over before you know it, as I said before its just a blip and after what we have all been through what with chemo and surgery rads really is a walk in the park when you think back to the earlier treatments.

Wishing you all the best with your treatment, remember to keep using your cream or aloe (my personal choice) and to take care of yourself.
sending love and light to you
sarahlousie xxx

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Re: starting rads in jan

hugs and thoughts to Sarah and Sarah-Louise - hope this heals asap for you both. Love the mamory typo!! x Keeping myself busy today and having a good clear out of cupboards xx

sarahlousie
Member

Re: starting rads in jan

Hi Sarah,

Sorry to hear about your skin, funny thing is I did exactly the same thing yesterday thought it was a bit of dried aloe vera and turned out to be a bit of my skin, whoops!!!! Still slavering on loads of the aloe juice onc said it was ok to use instead of the aqueous cream which has loads of parabens in and as I threw out all my expensive cosmetics and replaced with expensive organic paraben, sls, aluminium free products I thought no way am I using the cream, the aloe is working just as good only a small patch with flaky skin, still sore and red of course the hot flushes don't help with this but what can you do!!! I'm still missing my boob I look like I'm caved in on that side and my right side arm still hurts and is very tight doe'snt help that now the mx site skin is tight from the rads. Sorry about the moan but sarah this is just a blip really when you consider what we have been through and now it will only be a matter of time before all of this is just a bad mamory LOL sorry spelt it wrong but realized how funny it was.

Hope you are enjoying your seaside break, sending you lots of love and healing vibes
sarah xxxxx

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Re: starting rads in jan

Hi all
So I thought it was a bit of gel flaking off, turns out it was skin 8-(. Thoroughly fed up now. Having trouble keeping dressings in place. It will reach it's peak on Tuesday so I am told. I am going to see dressings nurse Wednesday. I am by the seaside at the moment and feel very ugly. Missing boob and now it resembles medium rare steak. My OH is lovely and very supportive.
Cup of tea then off down the front for a bit.
Any words of encouragement from any rads ladies who have been through this already?
X Sarah

Cackles
Member

Re: starting rads in jan

Afternoon all. I finished three weeks of DXT twelve days ago. I am so lucky although my chest has a burning feeling I am not red or sore. I slapped lots of Aqueous acream on every night thickly and let it soak in overnight. I wear cotton next to my skin day and night and take soluble Asprin twice a day . It helps with sunburn so I tried it for the radiotherapy and so far so good. The fatigue has only just hit me today so I am off for an afternoons ziz.
I hope you are all finding the side effects minimal.
Cackles

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Re: starting rads in jan

thanks Sarah and Zax you have made me feel a lot more calm and collected and ready for Monday. I guess it is just that first time that is a bit of a psychological bummer but am confidant all will go well. Will pick up some aqueous cream this afternoon thanks for your thoughts and help xx

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Re: starting rads in jan

Hi chicci and cosmic

The treatment is absolutely fine. I got tired about no 12 ish. I had a rubbery thing put on me which makes the whole thing more intense. I think I was just unlucky with my skin reaction.

If your skin goes red, mine didn't until no 10 make sure you have it looked at. No wooziness today 8-). Dressing changed without incident.

X Sarah

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Re: starting rads in jan

Hi Chicci, Cosmic

I've just started my rads on Wednesday (18 in all) and it's really quick and painless so far.

You go in, top off and into a gown, lie on the treatment bed (cold!) and the radiologist (cold hands!) spends about 10 minutes lining up the machine and adding a few more pen marks on your skin They leave the room, the machine buzzes a bit, then a bit more then it's all over. It's really that quick.

As for preparing buy some aqueous cream and apply a thin layer twice a day to the area including armpit, it doesn't matter if you only start now. Oh and avoid using anything with perfumes in it, I use Sanex Zero shower gel but simple soap will also be good. And you can't use deodorant once you start. If you use perfume spray it on your clothes not your skin. Lots of deodorants, shower gels etc have aluminium or metals in them and this is what you need to avoid as it interferes with the radiotherapy.

I've not felt tired yet but this is the most common SE which normally kicks in around zap number 8 so just be kind to yourself. Hope this helps, will be virtual hand holding for you on Monday. Zax

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Re: starting rads in jan

Hi Chicci
Hopefully once the first zap is done we will have a better idea of procedures etc - I think it is the unknown that is a bit scary. I haven't been given any cream or anything but have heard that a thin layer of aloe vera before you go is good?

Hope all goes well for you and have a good weekend -- and... deep breaths etc on Monday!!!

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Re: starting rads in jan

Hi Cosmic

Yes I'm starting on Mon 30th and getting a bit nervous too but think we'll both be fine once we start.

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Re: starting rads in jan

Getting a bit nervous - starting rads on Monday 30th. Think Chicci you are starting too? Hope all goes ok

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Re: starting rads in jan

Hideous. That's all I'll say. Well, not all. Came over all woozy when I had to look at the site of my rads today. I had to look cos I had to change my dressing. I guess it's so bad because my skin has perhaps thinned due to chemo. So you peeps starting this treatment shouldnt be unduly worried. However I am slightly miffed at my lovely onc who dismissed rads as a walk in the park,leaving me totally unprepared for the discomfort I am now in

Hope everyone else is doing well

X Sarah

Moan moan moan moan lol

sarahlousie
Member

Re: starting rads in jan

Hi
Just finished my last rad this morning so glad thats it, mx site red and sore and my back is hurting a bit as well, went out and had some really nice food for lunch to celebrate, thank god thats over with, am feeling quite emotional today signifies the end of conventional treatment and a year long journey, feeling exhausted and tired so will go and have a lie down for a bit.

Sarah - glad you are finished, doing a happy dance in celebration, my nurse told me to just go with it if your feeling tired/fatigued she told me that the next two weeks I could feel sore and tired but then it will get better also told me not to expose my rad site to the sun this year and be careful using creams on the rads area. Sounds like a wise move taking the paracetamol.

Speak soon luv and light to you all
sarahlousie xxx

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Re: starting rads in jan

Um, I should have posted on the wide awake club. Wide awake at just after 1.00 am. Why? After a bit it dawned on me that it was the discomfort of rads. Couple of paracetemol and I found my way back to the land of nod. Anyone else having trouble? I have decided to keep myself topped up with paracetemol for a few days until I have begun to heal a bit better

X Sarah

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Re: starting rads in jan

Good afternoon

Re headaches, make sure you drink lots. Take parcetemol. Anything that helps really.

I have just finished my zaps today. Oh the liberation, but the memory lingers on. Have dressings applied and now a lot more comfy. Will feel better after a week, so I am told .feel quite tired but that is probably due to travelling back and forwards to hospital.

Xxxx sarah

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Re: starting rads in jan

Hi ladies, well had my 2nd zap today, so far so good, early days but will be following ur advice. I don't suffer from headaches but an hour after I'm zapped I get a headache that lasts a couple of hours. Could be lack of sleep, feel I struggle 2 sleep. Anybody else experience this? Hope your all doing well, karen xx

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Re: starting rads in jan

Last one tomorrow! Will persuade dressings nurse to give me more supplies rather than having to get px from docs. Hope everyone is ok
X Sarah

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Re: starting rads in jan

Good morning all

Have penultimate boost today. Be glad when it's finished. Sitting around semi naked today ( sorry neighbours) in a bid to cool down rads site. Will see dressings nurse today. Hopefully it will have achieved it's peak by Wednesday so it will start to get better. Fingers crossed. Really looking forward to going to the seaside for a few days for a break.

Hope everyone has had a good weekend

X Sarah