January 2018 Radiotherapy

[Mishy18]

Anyone know if the hospital would see me rr my skin im finished now had last clinic review lsst Tuesday but skin under breast is peeling think i need more flamazine but don't know what to do as the stuff i have got has been n open 10 days now and it says on box to discard after 7 days still wite sore too its 12 days since ful breast and armpit rads and 5 since boosters i know it will get worse yet at site of booster so im concerned anyone experienced this?

[Ruth.J]

Crocrazy nothing beats memories with our mums wish everyday mine was still here. It really has helped so good luck and enjoy John Lewis xx

[Crocrazy]

Thanks Ruth, if nothing else it's an opportunity to have a trip to John Lewis habadashery department :-).  I can't help myself in there, l love it!  There is something about the tubes of buttons, lengths of ribbons and balls of wool which take me back to being a child and going with my mum when she was shopping for her sewing supplies for her projects.  Funny what can trigger memories off.   Thanks for the tip, it sounds like it would be very soft on the skin.  X 

[Ruth.J]

Crocrazy they advised me to use some silk as I was in pain with cotton bra. Bought half a meter from John Lewis £8 I fold it up lay on my breast and then tuck it under the fold breast and it really helps xx

[Crocrazy]

Hi Mrs Meow,

I am doing a long round trip too. About an hour each way. Love your description of your travel being your new hobby!! Good luck for Thursday x

[Crocrazy]

Hi Peanut,

They told me from the outset I would be breath holding.  My ct planning scan was done with the hold in place.  From Eliza's experience it looks like they can make the decision at the ct planning scan stage too.  Sorry you have had such a time getting to this point.  Good luck for starting.

I am red under my boob today and hot.  They had a look at it yesterday and said it was to be expected, keep going with the moisturising. I am slathering on the aloe and keeping my fingers crossed.  10 more to go! 

Hope everyone is doing ok, glad its Saturday and a couple of days off from zapping x 

[Eliza]

Hello Peanut, breath holding isn’t always needed. When I was planned we did the CT without breath holding and then I went back to the waiting room while the images were sent to physics where they overlaid the beams and decided whether we'd need to use breath holding. My heart wasn’t in the field so someone came to tell me that and I went home. If it had been, we'd have done the second CT with breath holding.

I'm now getting quite red. Only 2 more to go, but I'm having Monday and Tuesday off so that I can go to a conference.

Eliza xx

[Nuthatch]

Thanks, Helena. I’ll remember that about the dressings. My review lady yesterday said she’d found that people who had had double mastectomies were less likely to have skin breaking down and blistering, so fingers crossed that works for me. One advantage! X

[Shefgirl]

Hello MrsMeow - how strange we are both starting on Thursday!  I have 15 sessions and am quite glad that we have the 2 days and then a break over the weekend.  I agree - it is great to be able to chat with other women going through this and share tips/advice.  Keep me posted and we can compare notes x

[Shefgirl]

Thanks Crocrazy - I too got the Aloe Vera from H & B and agree it is nice to apply.....will have a look at the deoderant although I got the impression they would prefer me not to wear any!  I hate feeling sweaty and smelly and  I know from experience this will happen if I feel nervous so will investigate further.  I had a WLE and 2 x re-excisions to get clear margins and its fair to say I was a puddle by the time I got down to theatre on more than one occassion!!  Thanks for your advice and good luck with your ongoing treatment x

[Shefgirl]

Thanks Nuthatch - I will get some E45 and yes I have been using the Aloe Vera in advance to check there was no reaction to it.  And thanks for your good wishes.  Hope that you continue to be problem free as you progress with your treatment x

[ladybowler]

Ladies

Ask you rads team for polymem dressings, they are very good for prtecting your breast area from friction and also help where the skin is peeling.  I believe.  They gave them to me at the hospital when my skin looked as if it was starting to break down

xxx

[SharonB]

Hi Nuthatch,

I’ve done 11 now, having 15 plus 8 boosters, so it will be another couple of weeks yet.  Really having to psych myself up to go out to the hospital.  Been to speak to the Macmillan volunteers today and going to try one of the free therapies (reiki, reflexology, etc) as a ‘treat’.  My underarm scar area sore today too.

Hey, ho!  We’ll get there..... xx 

[Mishy18]

Wish someone had told me that my armpit hadd been really hurting with the axilla rads as well as the breast finished in Tuesday fir the boosters but under arm last Tuesday so my skin is as they say at its peak reaction phase was all black and really red but has started peeling so have to be careful when applying cream its also peeling under my breast fold which im also being careful about

[Nuthatch]

Zap 12 today, plus a review. I’m red under my arms from the treatment and that’s a bit uncomfortable. Was advised to put a cotton hankie under my armpit to stop any friction of skin against skin, so I’m passing this on in case it helps anyone else. Hope everyone else is fine and can enjoy a zap-free weekend. X

[Peanut57]

Hello.

I havent been on the forum for a fair while, I had some issues after my surgery that i had back in October which are only now starting to clear up. I had Celulitus to start with and that wouldnt clear up, so they kept me in and I was given a antibiotic that they keep for when normal antibiotics dont work, this then gave me Hives from my head to my toes several days later so had to go back in again, finally allowed home and although infection markers showed the infection had gone it has stayed very inflammed and was filling with fluid every now and then which needed draining. It is slowly looking a little better, fluid has gone and the Oncologist happy to proceed to radiation now. So this coming Monday I start my course of 15 treatments. It is on my left side but nothing has been said about breath holding, should I be asking about that or does it not always need doing? Also Ladies can I ask what can I use to help with the hot flushes, I am so getting some crackers from these pills!

Hope your all doing fine xx

[ladybowler]

MrsMeow

I love that description of it being a lovely comfy blanket 🙂 xx

[ladybowler]

Mishy

I am much much better thank you xxx

[MrsMeow]

Hi Shefgirl - I start on Thurs next week - are we twins? Have 15 then 4 boosters so finish on valentines day!
I have extremely dry skin so through chemo have continued with E45 oil baths and hope this will still be OK throughout rads- and will add the cream from the cancer centre and will probably get aloe Vera cream too from h+b
My journey time to treatment is a round trip of over 3 hours each day - so will be my new hobby taking most of each day!
Hope you all are doing well with treatment - am so pleased there is this thread to share how you are getting on - like a lovely comfy blanket! Xx

[Mishy18]

Thanks Helena it was a lovely feeling, i hope you are feeling better today xx

[Crocrazy]

Hi Shefgirl,

I am glad you have got your dates.  I am having number 5 today.  So far so good!  I am using the aloe vera from H&B and it is nice.  Non sticky and seems to sink in.  I was worried about deodorants too as they told me not to use one with alumium in.  They recommended the Salt of the Earth one from H&B.  It is a bit strange and not really like usual deodorant - looks like water in the bottle but it works.  I was convinced I was going to smell, but it does seem to do the job. Good luck X

[Nuthatch]

Hello Shefgirl
Like lots of the other ladies, I’ve used E45 lotion throughout (3 times a day) to moisturise. And I have aloe Vera at the ready to deal with any burning, blistering bits. Am on day 12 and haven’t needed that yet. It might be a good idea to slap some of the aloe Vera on this week just to check that your skin is happy with it, if you’re very sensitive? And drink lots and lots (water!) Hope it goes well for you. Keep in touch. X

[Nuthatch]

SharonB
You poor thing! Flu on top of rads can’t have been nice at all. A LOT of rest required. Yep, slapping on moisturiser and drinking loads. Session 12 today, followed by review. Can clearly see the areas of the treatment on my pink chest and underarms now. Will you be finishing next Thursday? (Can’t remember if you’re having boosters?) My last one is Wednesday and I’m feeling a bit peculiar about that. Xx

[Shefgirl]

I am due to start 15 sessions of radiotherapy next week.  I have bought some Aloe Vera in preparation but wondered if any of you have any useful tips in terms of protecting the skin?  Or products you can recommend?  I tend to have sensitive skin generally so am a little apprehensive.  Thanks x

[Shefgirl]

I am due to start 15 sessions of radiotherapy next week.  I have bought some Aloe Vera in preparation but wondered if any of you have any useful tips in terms of protecting the skin?  Or products you can recommend?  I tend to have sensitive skin generally so am a little apprehensive.  Thanks x

[ladybowler]

MIshy and Mai

Sorry I havent been on to congratule you, especially you Mishy as it was two days ago, but I am ringing the bells for you tonight.  Hope you are doing something lovely to celebrate finishing active treatment.

Sending you both lots of hugs, remember that the next two weeks you will still be feeling the effects of the rads so keep on with your regime

Sending you lots of hugs

Helena xxxx

[SharonB]

Hi,

Thanks for asking.  I’ve had 10 now Day off today as machine being serviced.  Back tomorrow.  I’ve been lying low as picked up flu just after Xmas so really struggling with energy levels.  Feeling a bit better each day though.  Yes, feeling very tender and red now, slapping the moisturiser on!  How are you??  

Best wishes 

xx 

[Nuthatch]

Good grief Charys! You must have felt abandonned. It does seem that you go from very intense to nothing at all very quickly. So glad I have this forum to turn to. Thank you. X

[Charys]

It IS an odd feeling nutchatch, really strange, remember it well. You kind of stand there and go 'and noowwwww?' Fiona is right though, the bcn can be called at any time and we are here. My end of treatment was made a bit worse by the fact that I never had a follow up 6-8 weeks appointment made, so felt very 'chucked out the other end'. I did ring them eventually !

[Nuthatch]

Thank you. This forum is just brilliant! X

[Fiona2901]

Nuthatch

You can always ring your BCN if you are worried about anything and we're all here for you!!!!

Sending Big Hugs

x Fiona

[Nuthatch]

Thanks all, for reassurance about the different policies in different places. Seems odd, but what can you do!
Think I’m getting anxious about being booted out of the system next Wednesday and then not seeing anyone for 2 months. It’ll be very odd.
Hugs to all, and thanks for your replies. X

[Charys]

HI all,

Yes, it seems different areas have different 'meet up' policies during the rt process. Some seem to just go by referral from the rt team, if any problems arise, but some oncologists seem to meet at some point with the patient as a matter of course. I saw mine for about 2 minutes on about booster 3...so nearly at the end. It was also a non-meeting....it felt a bit more like box ticking as there was nothing to report really. She had a quick look and asked a few questions and that was it. However, everyone should have a follow up appointment 6-8 weeks after rt! Make sure you get it

[Jay68]

Sorry to hear you've been unwell Helena, hope the worst is behind you and you feel better each day x

[Fiona2901]

Hi Nuthatch

When I got my list of appointments at the start of my treatment I had two meeting scheduled in with my Oncologist.  The Radiographer expalined that this was due to the fact that the Oncologist likes to see you  during treatment to see you were getting on.  She asked me how I was feeling and examined my breast to see how it was and she said everything was fine - great relief there after all the issues I've had.  She asked me if I had any questions and I said about my breast slightly aching so she said that was quite normal and to take paracetamol if needed.  She asked if I had any questions about Tamoxifen and I said no as I haven't had any issues with it since starting it in September.  She said I would see her 6-8 weeks after the treatment as ended so the same as you there.  I see her again a week on Friday when I have just 2 sessions to go.

Hope that helps x 

[Ruth.J]

Hi Crocrazy

So glad it helped keep going xx

[Ruth.J]

Helena

Feel better soon this cold/flu thing going around has been nasty

Xx

[Nuthatch]

Hi Fiona
Good to hear that you had a positive meeting with your onc. Do you mind me asking what sort of things you covered? I don’t mean to pry but I only ask because I had a meeting with mine on day 8 of my rads. But it was a non-meeting because she asked how had I got on with the treatment and I said I was fine so far on day 8, and she looked surprised and said well we shouldn’t be meeting yet - I’m supposed to meet up with her 6-8 weeks after rads treatment is finished. So that was that! Bit of a scheduling muddle. I suppose different places have different policies. Ah well.
X

[Fiona2901]

Crocrazy - Day 6 was fine and the appointment with my Oncologist was good as well and no issues - yet lol!!!!!!

Ladybowler - hope you are feeling better x

[ladybowler]

Crocrazy

Oh thank you, feeling much better tonight and I am sure a good night sleep will do me the world of good xxx

[Crocrazy]

Hi Fiona, hope day 6 went well and your meeting with the oncologist was positive too x

[Crocrazy]

Hi Nuthatch,

Yay, 2/3rds done, that's great.  Haven't managed to listen to the cd yet and I forgot to email the lovely living well lady I met yesterday too.  I shall add it to the list of other things I have forgotten too!

Day three for me today.  Managed two holds of 30 seconds today after being duff yesterday. Hurrah x

Hi Ladybowler,

Sorry to hear you have been feeling poorly, there are some really horrible bugs about.  Hope you are feeling brighter now x 

Hi Ruth,

Thanks for the tip about biting on the mouthpiece.  I tried that today and managed the longest holds I have done.  Thank you x 

[ladybowler]

Hello ladies

Sorry I have not been around for a few days but been a bit poorly and as a consequence a bit knackered.  I hope you are all handling your rads well, I am going to catch up on your posts.

Sending you all hugs

Helena xxx

[Jay68]

Hi Ladies

I finished my 15 rads following right MX and total lymph removal on 19 December.  

All through treatment my skin was good - just a little pink and scratchy feeling in the final few days.

However, a few days after treatment the skin becomes much redder/browner/blacker as the days/weeks go on - so my advice would be to use lots of moisturiser in the final days of rads - drink at least a litre of water (plus other drinks) a day, go bra less/top less whenever possible and rest up when you get the chances.  Thankfully although my rads area looked terribly sore and I gained lots of sympathy from those who saw it - it actually wasn't, as the area receiving the rads is still very numb following nerve damage from op!

This week I can honestly say all looks so much better - the peeling of skin has subsided and I generally feel the energy is rising within me!!  

Good luck for remaining rads ladies - the end of the active treatment is almost upon you!  and reaching that "final day" is just an amazing feeling.... xx

[Fiona2901]

Good morning

Day 6 for me today which includes an appointment with my Oncologist beforehand this afternoon so I am intrigued to hear what she will have to say.  Feeling quite tired at the moment but other than that skin seems to be OK so keeping my fingers crossed it will remain that way.  

x Fiona

[Nuthatch]

Hi SharonB
Just saying hello and hoping you are doing ok? Are you day 9/10 now? Hope all is well and that your chest isn’t uncomfortable.
Good good vibes. X

[Nuthatch]

Hi Crocrazy
Those courses do sound like something to look forward to. Am waiting for a call to see what spaces are free. Have you had a chance to listen to the cd yet? Hope it relaxes you - and that you have plenty of time to listen to it!
Day 10 for me today which is 2/3 done, yippee 😀
X

[Nuthatch]

Hi I Don’t Believe It
Sounds like you are coping very well with your skin! That’s very good news. Hurrah for dark evenings and closed curtains and being a hussy!
Think my case is simple really because I have no nipples to worry about, and no need for a bra, being completely flat. So that rules out two potential concerns. Skin is pinker but haven’t found it particularly hot and I’m keeping my aloe Vera gel in reserve for when it does.
Infusion on Monday was fine. Not keen on having the canula put in but that’s minor really. Then cold feeling in my veins up to my elbow but after that I suppose the goo gets warmer and I didn’t feel it any more. I was achey yesterday and felt cold, but that’s about it. Have some lovely chewy calcium tablets to take now too.
Positive wishes to everyone else going through this. And hugs. X

[Crocrazy]

Hi Nuthatch,

My meeting with the lady yesterday went well.  She is from the Penny Brohn charity who run living well courses.  I can have three sessions and they do all sorts of things - I think I am going to go for the mindfulness one.  She gave me a CD for relaxation yesterday which I think will be a real help too. 

I hope you get some dates and sessions in soon. 

Day three for me today.

X

[I dont believe it.]

Hi Nuthatch. I hope all went well on Monday with your other treatment.

That is me now had 8 zaps so counting down now. Noticing a pattern emerging of radiotherapy area becomes very warm on the long journey home so I am being a complete hussy and exposing my top half completely when I get in and re applying cream which of course just melts in. I have the aloe Vera in the fridge for if it may become too Hot! I do cover up again mind just with a loose cotton night shirt when Cooled down. Fortunately being dark nights the blinds are all closed in the house and hubby is not home till 7pm so probably getting over two hours to cool down. Could never imagined myself doing anything like this before BC!

Second thing I am now noticing too is the actual breast that had the surgery becomes firmer and quite lumpy around the scar  by the time I am going to bed. In the morning though it all seems back to normal. I asked about this today and was told ' that's normal!' It's the scar tissue inside reacting to the radiotherapy So no worries and it's not painful it's just a sensation which of course makes me want to touch it.

I have to say the treatment is going well and I feel well. Skin is showing no signs so far of changes just the nipple is a bit pinker but again told was normal.

This is all going better than I ever imagined it would have so will continue with my care instructions from the nurses and fingers crossed it won't get too bad over the next few weeks.

Hopefully all is going well for those just starting. Xxx