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November 2017 Radiotherapy

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Re: November 2017 Radiotherapy

I’m going to wait until tomorrow and take duing the day just encase.
Did I see you say you are going to the craft fair this weekend have you been before is it any good? My daughter wants us to go to the German market not sure if I can face it.
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Re: November 2017 Radiotherapy

Ruth

 

And on the 3rd January the light will be burning very bright.

 

Like with everything they have to set out all the side effects of a drug but it does not mean that you will get any or all of them but yes it is scary time, I remember taking my first one and waiting to see what would happen to me 🙂

 

H xxx

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Re: November 2017 Radiotherapy

Hi Helena
Thanks just picked up the first lot read the leaflet wish I hadn’t bothered😂 but fingers crossed and hope for the best if I have problems with these they want me to have my ovaries removed which I don’t have a problem with but my gynaecologist doesn’t want to go it now as since May I’ve had 3 general anesthetics thinks I need to give my body a rest before doing that and have to have rads first. But at least now beginning to see some light at the end of the tunnel. Xx
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Re: November 2017 Radiotherapy

Ruth

 

Good to hear that it went well today.  At least drinking the water today will get you in the habit of taking in plenty of fluids during your rads.

 

I started my tamoxifen a month before I started my rads, I looked at the packet for a week before getting up the courage to take it 🙂

 

Helena xxx

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Re: November 2017 Radiotherapy

Had planning appt today and ct scan chest X-ray markings and deep breath hold practice it was ok just felt like I needed to drink a bottle of water and brush my teeth to remove the plastic feeling 😂. Rads all booked start on the 6th Dec finishing on the 3rd Jan 15 normal and 5 boosters. Having 2 Saturday appointments to cover Christmas and New Year. Doc wants me to start tamoxifen today as I have pcos to try to stop my periods so fingers crossed x
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Re: November 2017 Radiotherapy

Helena no they just felt pity for me but no mention of new creams of over doing it but I will ask some questions tomorrow thanks X 

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Re: November 2017 Radiotherapy

Zena thank you I will ask tomorrow yes my nipple in a bad way as well just looking forward to next Tuesday all done X 

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Re: November 2017 Radiotherapy

Mishy

 

Oh thats good, they didnt do that with me, I had 4 days break at xmas and 3 at new year.

 

Thats what I did last year, amazing how easy it was 🙂  To be honest I am going to do the same again this year, I can not face going into Birmingham shopping at this time of year, although a friend and I are going to Hatton Country Village, on Saturday it is one of those crafty centres so hopefully I will be able to get everyones pressies then.

 

xx

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Re: November 2017 Radiotherapy

Yeah Helena they explained I will probs have to do the sat before Xmas and new year due to it being a Bank Holiday and the dept being closed so the gap isn't to big between sessions so yeah a Jan finish!!! I had hoped I would be starting back end of this month but never mind at least now I've got my start dates just going to have to online Xmas shop!!
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Re: November 2017 Radiotherapy

That’s gave - my phone auto corrects gave and I’d and a few other words if I don’t spot them . Sorry I’m not illiterate.. actually just got my first class degree last month so very proud of myself after having the year from hell on top of Doing that and my 3 kids .. lol now I’m just showing off 😊
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Re: November 2017 Radiotherapy

Merc - for my poor nipple that is also scar from surgery too .. just to add to the pain . They have me a hydro jel dressing - a skin dressing used for burns patients, it’s protection for it and keeps cream in and clothes rubbing away .. it’s helped a lot , ask your rads girls , they will have them in their draws and should really have given you some x
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Re: November 2017 Radiotherapy

Dear M ,
That’s super advice , I don’t like soya but I do like coconut one so il do that as I know your tips are well worth listening too as they are from your very considered experience and knowledge.
The ladies who do my rads are ok but I do feel like I’m on a conveyer belt , I suppose they have a job to do and time I’d precious . They have not given me much advice on minimising effects or best creams but my Chemo girls have and your good self.
I definitely miss your thoughtful realistic approach on here and will check in with you and some of the other amazing ladies, who’s strengths and journeys are just incredible.
Biofine and medihoney also dermol lotion are all good and help, I also take vit e tablets as well as a good multi vit ( solgar ) . Good old aveeno is good too . Just a practical tip for the other rad ladies il pass on .. this site can be so useful for support and passing on knowledge.
Much love to you M you are an inspiration and I’m hoping that you are doing ok atm . 💜xxxx
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Re: November 2017 Radiotherapy

Merc

 

Hopefully they will give you some cream, I have seen other ladies on here being given something different when they have experienced this.  DId they say that you might be moisturising too much?

 

Nearly there mate

 

Helena xxx

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Re: November 2017 Radiotherapy

Hi hope everyone is feeling ok I'm on my number 14 out of 20 boob very burnt and red nurse said she hasn't seen one like mine before it's very painful (taking painkillers like sweets)and doing cream four times a day got review on Wednesday hope they can give me some advice can't wait for it to all be over X 

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Re: November 2017 Radiotherapy

Hi Zena,

 

have missed seeing your posts. How lovely to hear from you......yes I well recall my rads..25 days of them, I was pretty scared because in those days, radiographers mostly nipped in and out with very little bedside manner! Later I saw that on the lists of complaints in the annual report for the hospital, that department had the most complaints....happy to see that nowadays they are minimal.

 

anyway sorry about the burns...I was on soya milk all through my rads as at that time I had gone off dairy...anyway, I had NO  burns or redness and I put it down to that, several of us were on soya milk and they had no burns either (am back on dairy nowadays but I'd give that a try if I need any more rads and I'd be writing down any questions and handing them over to the radiolgraphers!)

 

the other thing i recall  is that whenever I sit in the sun..if i don't keep the area covered, plus the neck on that side, it still gets red. Apparently the rads go on working for many years.

 

nice to hear from you...love and hugs,

 

Moijan💚💚💚

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Re: November 2017 Radiotherapy

Mishy

 

Yep it certainly is 🙂 at the end of the day you are the patient and your wellbeing is the most important thing

 

So you will be finished early in the new year.  Mine was a pain because I didnt start until 22 dec and what with Xmas and New Year Bank Holidays I didnt get finished until 19 January this year.

 

H xxx

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Re: November 2017 Radiotherapy

Hi Helena I'm having 20 sessions 15 regarding then 5 boosters thanks for the tip Helena I would never have thought of doing that it's amazing what a little shove from above can do!!!
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Re: November 2017 Radiotherapy

Mishy

 

Yay that is fab news worth that call.  How many sessions are you having?

 

Helena xxx

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Re: November 2017 Radiotherapy

HI Moijan,
Sorry haven’t replied for ages , needed a break .
Rads is tough tough tough - burning boob and sore nips. Funny positions on a hard cold board - people peering over my boobs with pens and rulers .. then running from the room leaving me withsuch bright lights on I’m dazzled !!
Not to mention the fatigue and just generally weird feeling , or the 2 hour round trip everyday ..
oooo moan over - positives ; I can and have shopped so much in my beloved Cheltenham that all my Xmas presents are done 😀👍🏻 Pret manger for lunch most days .. yum yum yum .. on 3rd week now so not much shopping from now on and my hubby getting worried about the growing stack in his shed ( my new hiding place) .. and his bank balance lol ..
Any way keep fighting ladies , we are winning xxx
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Re: November 2017 Radiotherapy

Well done, Mishy. 

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Re: November 2017 Radiotherapy

Hi Helena took your advice have a scan on Thursday morning start radiotherapy 8th Dec will be 5 weeks post chemo so within the time limit xx
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Re: November 2017 Radiotherapy

Mishy

 

Let me know how you get on  xxx

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Re: November 2017 Radiotherapy

Thanks Helena I will do that first thing on Monday xx
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Re: November 2017 Radiotherapy

Mishy

 

Right well call the hospital main number and ask for the PALS (Patient Advice and Liaison Service) Team.  Explain to them about what has hapenned to date and how concerned you are about the fact you have had your onc apt and no planning apt.  They will take details, speak to the team and will get back to you.

 

Helena xxx

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Re: November 2017 Radiotherapy

I did that on Friday and she's on holiday for 2 weeks! I rang the scheduling department and the just said we have you on the system but no app is in place yet I'm getting worried about it x
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Re: November 2017 Radiotherapy

Mishy

 

If I were you I would ring the Oncologists secretary on Monday and check with her to see if she knows.

 

Helena xx

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Re: November 2017 Radiotherapy

Hi ladies I need to ask I had first meeting with radiotherapy onc to sign consent forms nearly 2 weeks ago I'm post chemo 3 weeks this Wed coming and still have not had my planning scan app yet I'm getting concerned as it was explained that rads take place between 4 and 6 weeks of last chemo I rang them yesterday and they said I was in the system but no appointments were in place yet I'm really concerned about this as I know it takes up to two weeks after scan to start
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Re: November 2017 Radiotherapy

Thanks Helena. I’m totally with you re anyone saying something nice sets me off! Xx
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Re: November 2017 Radiotherapy

Gail

 

Oh mate sending you a hug.  It is quite possible that it is the tamoxifen, I felt very tearful over a couple of weeks when I first started taking it, even anyone saying something nice made me cry, but it settled down.  And of course you are recovering from the rads so you will feel tired, are you making sure you take in enough fluid as that will help with the fatigue

 

 

Helena xxx

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Re: November 2017 Radiotherapy

Hi kimi, as Helena said, the boosters are a lot quicker, I also had to do the breath holding, but not for the 5 boosters.
I’ve been the opposite of you - started off positive and up beat and have hardly stopped crying since finishing on Tuesday! Am blaming it on the tiredness and tamoxifen.
Best of luck for the rest of your treatment xx
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Re: November 2017 Radiotherapy

Kimi

 

Hello and welcome to the thread.

 

Well that is week one under your belt, I think it is perfectly normal what you experienced, it is fear of the unkown, but like everything with this journey we find ourselves on once we get past that first part it is a lot easier because we know what to expect.

 

I had backache every day on my rads, it is the awkward position you find yourself in, which was compounded for me as I have a curvature of the spine and lying flat on a hard surface is pants.  I know there were days when I was concentrating on keeping my left leg still as that is the one that would ache.

 

I had 20 sessions, the boosters are a lot quicker and focus directly on the tumour site itself, not sure how that works for the left side and your breathing as mine was right side.

 

Looking forward to ringing the bells on here when you finish 🙂

 

Helena xxx

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Re: November 2017 Radiotherapy

I had first RT on Monday, I couldn’t stop crying, maybe the unknown, maybe the Letrazole I’ve started taking, I felt like an emotional wreck! Tuesday was better & I saw my Consultant afterwards as needed to sign another part of consent for boosters. I’ve completed a week now, so 15 left to do, I’ve got backache now, any experience of that anyone? Every ache/symptom scares me as I imagine the worst, but only finished chemo four & a half weeks ago. Good luck to everyone, so far (apart from Monday) found it tolerable, agree the marking up takes time, didn’t expect that, I’m having RT to left boob, armpit & collarbone, have to do breath holding, find I run out if steam towards end of session!! Xx
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Re: November 2017 Radiotherapy

Ruth

 

No problem, it is only my experience of this journey that I can comment on, but if it helps in some way,

 

Helena xx

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Re: November 2017 Radiotherapy

Thanks Helena you are always here to help much appreciated😘
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Re: November 2017 Radiotherapy

Ruth

 

I was supposed to be going on to letrozole as I am post menopausal, however I had had a dexa bone scan done a month before I was diagnosed, my mum was diagnosed with osteoporisis a few years ago and because I have Spina Bifida her GP advised that I have one done, I only got round to it last year.  The result that I have it in the spine, hardly surprising really.

 

As a result of this my onc changed me to tamoxifen as it is kinder on the bones than letrozole.  I must admit, touch wood, I have been on it for nearly a year now and on the whole have been fine.  I do have some days when I have an ache in a joint but it passes.  I have a big flush about an hour after I take my tablet and have had some days when I feel a bit out of sorts but again they pass.

 

My GP has advised that I have a dexa done every 2 years now.  I am also taking a Vit D and calcium tablet every day as that was the advise from the scan, but it is only a low one.

 

No that is so true but we get on with it xxxx

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Re: November 2017 Radiotherapy

How do you find it? I was worried about it as oncologist said it can cause osteoporosis in premenopausal women and my mum had osteoporosis and when she died 5 broken bones in her spine ankle and wrist. But they said it benefits out way the risk. And I have a bone density scan 2 years ago which was fine and they are testing my calcium levels in my blood today. Nothing is simple on this journey😃 but chin up and on we go
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Re: November 2017 Radiotherapy

Ruth

 

Yes I am on tamoxifen for the next 10 years x

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Re: November 2017 Radiotherapy

Did you take tamoxifen?
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Re: November 2017 Radiotherapy

Ruth.J

 

It is always so good when you have a plan and you know what is going to happen and when.  I know what you mean about getting it all finished by the end of the year, I unfortunately started mine on 20 December last year, same 20 sessions, so I finished on 19 Jan this year.

 

I can't see why not as it is nowhere near where you are having rads, but you could always check with your bcn.  I use clarins body cream so not sure about oil.

 

Helena

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Re: November 2017 Radiotherapy

So relieved Helena just feel better having dates and a plan. Silly question I know I can’t use oil during radiotherapy but will it be ok to use on my legs? My skin is so dry if not I look like a crocodile 😂 xx
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Re: November 2017 Radiotherapy

15 normal and then 5 boosters and then tamoxifen for 5 years
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Re: November 2017 Radiotherapy

Ptt 23

 

Think you have finished your rads today so ringing the bells for you hope you are doing something nice to celebrate the end of active treatment, but remember to keep up your regime for the next couple of weeks as you will still be feeling the effects of them.

 

Helena xxx

 

 

bell.jpg

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Re: November 2017 Radiotherapy

Ruth

 

Well good news that you now have a date.  How many sessions are you having?

 

Helena xxx

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Re: November 2017 Radiotherapy

Hi all well had my oncologist appointment on the 16th blood tests today ct and chest X-ray booked for the 21st. Have been told 1st rad booked for the 4th Dec but I am going to beg if possible to start on 30th Nov so it will be finished in 2017 and can start 2018 anew. Hope everyone’s treatment is going well.
Ruth x
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Re: November 2017 Radiotherapy

Headandheart

 

Thats great at least you have a date to work to and it will be all done and dusted by Christmas 🙂 🙂  I will start the December thread at the end of this month

 

Helena xxx

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Re: November 2017 Radiotherapy

So I have my dates now, starting 27th Nov, over by Christmas. I guess I’ll join the December group. I’m planning to work through treatment, but with slightly reduced hours and some responsibilities taken off me so I can rest during the day a bit rather than my normal 13 hour full-on work schedule. But if it’s all too much I can take time off. Very grateful for supportive boss. 

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Re: November 2017 Radiotherapy

pecan

 

Check it out with your rads team they will let you know.  I used 99% aloe vera which I got from Boots xxx

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Re: November 2017 Radiotherapy

momo

 

Everyone reacts differently to rads, the trick is to let your team know so that they can keep an eye on things and they will advise you accordingly honest

 

Helena xxx

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Re: November 2017 Radiotherapy

Second lot of rads today and boob feels a bit sore, achy really. Is that normal so early on?!

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Re: November 2017 Radiotherapy

So first day of rads yesterday which means one down, 19 to go! The worst bit about it was as it was my first one they had to do some X-ray imaging so it took a bit longer than usual. That said it was all done and dusted in 15 mins. Arms ached a little afterwards and throughout I kept getting an itch in various places and of course couldn't scratch them! It was probably all in my mind - when you know you can't move, you need to move!