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April 2018 Radiotherapy

Member

Re: April 2018 Radiotherapy

BizzyLizzie,

 

sending you a hug. Sorry that the fatigue has hit so quickly. The journey time and travel really adds up, doesn’t it. It might just take 20 mins to be zapped but the round trip is taking me 2.5hrs every day.

 

Im also on day 3 (four today) and also fair skinned and turning pink. Slightly scared about how burned I will be by day 19,...

 

Hang on in there. It feels like it’s all consuming right now but we will be through it soon. 

 

 

Member

Re: April 2018 Radiotherapy

Spent my birthday having 3rd session today - think due to having ME I am struggling with total fatigue , 

dizzy and already red - I am fair skinned.

i know fatigue is common but seems out of proportion with the small number of Rads.

Getting hospital transport as it is 30miles away and involves motorway and I am just too tired but this is on average a 5/6 hour round trip.

drinking plenty of water and using E45 lotion.

didnt expect to feel this dreadful so early on so very agitated sadly.

Community Champion

Re: April 2018 Radiotherapy

Butterflyflyfree

 

Yay a third of the way, nearly there, I know I think that is the worst of it the to and fro to the hospital.

 

Hope you are feeling much better soon xxxx

Member

Re: April 2018 Radiotherapy

Had a panic yesterday as had a sore throat and thought it was a se of the radiotherapy..turns out I’ve got a cold 🙄 only the second one I’ve had in the last 9 months!
I’ve got a couple of really soft vests that I’ve been wearing, much easier!
Am a third of the way there now, although it’s a bit wearing going for appointments every day. Can’t wait for the weekend! Xx
Member

Re: April 2018 Radiotherapy

Lesley -I’ve done the same. Am in spaghetti strap camisole type tops. so much more comfy than a bra! Am tempted not to go back to bras after all this is over!!

Member

Re: April 2018 Radiotherapy

hi Knktnak

I had a bone density and CT scan after surgery and before chemo - everything came back clear, I got the info when I saw the Onc for chemo consent.  They spotted something on my liver which they suspected I had always had but repeated the CT after chemo just to make sure.  My BCN rang me to tell me that there had been no change therefore they were ruling it out.

 

Have you got an appt or arrangement in place to get the results of the scans?  They throw so much at you, I agree it can be overwhelming at times, but for me the worse bit was not knowing when I would know the outcome of everything. 

 

Rads are ok - obviously not something any of us want to go thru, but they are very doable. 

 

And yes it is good to be able to get things off your chest on here, knowing that someone will come back with "I felt exactly the same" etc.  Friends and family don't always understand, and I find its the little things that can cause the big problems in my head!

 

take care

 

xx

Member

Re: April 2018 Radiotherapy

Hi ladies

I had my planing yesterday and my rads start April 23rd, also had a bone density scan and this Saturday due a ct scan of my thorax,abdomen and pelvis with contrast.  All becoming overwhelming now and feeling very anxious.  I've been told bachs rescue remedy is very good and helps.  It's so nice to be able to come on here and share as don't won't to worry friends and family with my worries.

big hugs to all you lovely ladies.

Xxxx

 

Member

Re: April 2018 Radiotherapy

🤣  I have coffee with an friend two mornings a week when they are working at the same hospital for my rads!  Fortunately we are taking it in turns to buy the coffee! ☕️  Good distraction though!

Member

Re: April 2018 Radiotherapy

6 down 9 to go. Into single figures. I go into town early with my MIL and SIL as they work close by and are going in anyway. It's costing me a fortune going for a coffee every morning with my SIL before rads appointment. Fun tho!
Member

Re: April 2018 Radiotherapy

Number 7 ticked off for me this morning.

 

I've been advised to go bra/croptop less as much as possible, not so much 'sunburn' as chaffing - bizarrely enough I had already decided to do this so had gone today wearing a little spaghetti strap t-shirt under a jumper..... obviously the way forward ..... job for today - getting all my other t-shirts out!

 

 

Hope everyone gets on ok today

 

xx

Member

Re: April 2018 Radiotherapy

Hi Runawaygirl, I’m doing the breath holding and it isn’t as bad as you think. They count me down for 25 seconds about 6 times, and you just take the breath when you’re ready. You also hold a button down in your hand, and if you need to breath at any point you let go and the machine stops and you can breath again. I was near to letting go yesterday but managed not to! Makes your mouth dry so I take a bottle of water into the changing room so it’s there straight after. 

Number 5 for me today so will be 1/3 of the way through. Xx

Member

Re: April 2018 Radiotherapy

Yeah its a bit disheartening Jencat when the finish line moves but I guess we are all getting nearer to the end 😊

 

Had my planning meeting today and rads due to start 24th April, got the April dates only so far.

 

Also after speaking to Radiographer they said I would be looking at a 25 second breath hold but as I wasnt keen they have an alternative to protect the heart with use of lead lining materials so feel better about it.

 

Hardly noticed the tattoo dots being done but after chemo cannulas and endless blood tests they are nothing lol 😁

Member

Re: April 2018 Radiotherapy

Thank you very much for filling me in about next weeks appointment. I'm probably going on my own, but it doesn't sound like it will be too daunting or too much to remember xx

Helena, hope your mammogram goes well tomorrow xx

Community Champion

Re: April 2018 Radiotherapy

Once you get the first session under your belt it gets easier because you know what to expect.

 

Sending you all hugs

 

Helena xxx

Member

Re: April 2018 Radiotherapy

Hi JenCat.

 

Yes, same as for me. And they took me through the gated breathing with a few practice runs so i felt comfortable with it. The radiographer also had a chat with me about what creams to use (answer - diporobase or aloe vera is their preference). I was out in about 45 mins.

 

Good luck! I was really wobbly before I went in, but the staff were lovely and made me feel really comfortable. 

Member

Re: April 2018 Radiotherapy

Hi Jencat.
On mine I had to lay on a bed which is the same as you lay on for rads. The nurses draw all over you and then do a CT scan. They'll also give you your free nhs tattoos. After that I waited a few minutes then saw my onc who got me to sign a consent form and talked about side effects. I got a full list of all my appointments too.
Cassie x
Member

Re: April 2018 Radiotherapy

Hi jencat
I had CT, tattoo and then chat with the Macmillan radiographer - advice and questions. Didn’t take more than 45 mins though
Xx
Member

Re: April 2018 Radiotherapy

Lesley I've pm you x

Member

Re: April 2018 Radiotherapy

Hi everyone, I've got my planning meeting next Tuesday and on my letter it says it will last for 1 hour and 10 mins, what happens at the meeting. I know I will have a CT scan, but I wondered what else? x

Member

Re: April 2018 Radiotherapy

Hi runawaygirl, I was told my oncologist that I would be having 3wks of rads, but have had to change hospital for them because mine doesn't do the breathing technique and now I've been told I've got to have 5-6wks of rads. Think it's because I'm TN and got a couple of lymph nodes in my breast. It's not an age thing in my case as I'm 58.

I've got my planning meeting next week and rads starts on 30th April, which will be 6wks after I finished chemo x

Member

Re: April 2018 Radiotherapy

Just done number 2. All fine. Had a very hot boob last night and really vivid dreams - anything to do with radiotherapy (the dreams not the boob!).

Am also doing the breathing thing - it’s fine. They have broken the zaps up so I’m not holding my breath for more than. 10 seconds at a time. I could probably do the 20 seconds but it’s less stress knowing I don’t have to.

I’ve also had four boosters added because of my age but heh - it’s only another week. So 2 down and 17 to go....
Member

Re: April 2018 Radiotherapy

Planning meeting today - it was all very simple and made so easy by the excellent nursing staff.
Thank you WhyteFawn for your support and advice today. Hope the next 2/3rds of the treatment go well for you
Feel much more reassured following the planning meeting today.
BizzyLizzy/Dusty
How did you find your first sessions?
Nat223
How did it go today?

My 1st of 15 sessions starts on Monday.

Good luck to everyone xxx
Member

Re: April 2018 Radiotherapy

 
Member

Re: April 2018 Radiotherapy

Hiya. I was the other way around was told 25 sessions but when I started it was just 15.
5th one done today so now a third of the way finished!
Member

Re: April 2018 Radiotherapy

I know what you mean RunawayGirl - I went from 3 to 4 weeks and felt cheated .... but in the overall scheme of things, one extra week doesn't make much difference.  It will be 11 months from start to finish by the time I get to the end of rads!!

I am TN and I think that is why I am getting the boost - definitely not under 50 - I wish!!

 

My trust likes at least 4 weeks inbetween last chemo and rads - but really it's only a week off.  I managed to get 5 weeks.

 

Mine is also my left side and I dont have to hold your breath - I was told they pick that up in the planning scan - its all to do with how close your heart is to your boob - mine must be a way away??

 

Good luck to everyone going on the sunbeds today ☢️  and any planning meetings.

Member

Re: April 2018 Radiotherapy

Morning ladies

 

I had a meeting with my Oncologist yesterday and found out that I will be having 3 weeks of radiotherapy as I was originally told back at diagnosis but an additional booster week has been sprung on me which targets the actual tumour site rather than the whole breast due to me being under the age of 50...Im 39. My Oncologist said it is common practice for younger ladies to have booster sessions. To be honest Im feeling a bit peed off as I feel the finishing line has slipped away again, I know its only by an additional week but still its like something else sprung on me at the last minute! My tumour was highly ER+ (score 8/8), grade 3, 16.5mm with excellwnt clearance margins and a small micromet (0.66mm) in the removed SLN.

 

I had my Planning meeting later today and because tumour was in the left breast, I too will be taught the breath holding technique. Am a little concerned after reading this thread that some ladies are having to hold their breath for up to 20 seconds and with a machine?? My Onologist said yesterday it would be for around 5-6 seconds! Maybe it is different for everyone?? My treatment is all at St James Hospital, Leeds.

 

I am only on day 12 of my final chemo cycle 6 so still really feeling the cumulative effects of all the chemo including the tiredness, fatigue, nausea, bad throat, digestive tract and bladder irritation and yet I was told rads due to start 23 April and my body still not feeling uo to it.  I guess I will get definite dates ar the Planning meeting today.  It just seems very soon and 2 other ladies on the same cycle dates as me dont have their Radiotherapy meeting until 16 April.  Really dont understand sometimes how they work it all out!

 

Good luck to all those already on and about to start rads treatment 😊

Member

Re: April 2018 Radiotherapy

Well done Bum on your last one!
It's nice to get the first one under your belt Nat. All the others follow the same pattern so you know what to.expect.
Number 4 done for me today. Just 11 to go.
Member

Re: April 2018 Radiotherapy

 
Member

Re: April 2018 Radiotherapy

First one done today. Felt emotionally much better now it’s started. As you’ve all said, painless, although I’m sitting on the sofa with a rather hot boob! Also saw a physio today for my cording, which has relieved a lot of the pain under my armpit. 

 

Only four weeks to go!

 

 

Community Champion

Re: April 2018 Radiotherapy

Bim

 

Ding ding dong ringing the bells for you as well. 

 

Well done, thats it now no more treatment for you.

 

Helena xxx

Member

Re: April 2018 Radiotherapy

Great that you're a quarter through already Lesley! Smiley Happy x

Member

Re: April 2018 Radiotherapy

Well done Bim! Smiley Happy x

Member

Re: April 2018 Radiotherapy

well done Bim - one hell of an achievement!!

 

🛎

Member

Re: April 2018 Radiotherapy

I can’t quite believe it but I’m ringing the bell today folks!! It’s been great to be part of this wonderful group of ladies.. p.s. I’m not going anywhere 😂😂 it’s great having your virtual support and continued advice 🤗

Member

Re: April 2018 Radiotherapy

Glad it was an easy solution Lesley, enjoy the freedom! Xx

Member

Re: April 2018 Radiotherapy

number 5 done - quarter of the way thru now!

 

I asked the radiographers about redness that I spotted under my boob - turns out I might have been overly cautious and the redness was caused by too much cream.  Advised to lay off the cream and go bra less as much as possible!

 

Happy Monday all!!

 

 

xx

Member

Re: April 2018 Radiotherapy

Hope it goes well tomorrow BizzyLizzy x

Member

Re: April 2018 Radiotherapy

Thank you all for your support 

it's so good not to feel so alone with this all 

we are the only ones who have an understanding of how it feels even though we all have our experiences to deal with .

 

Member

Re: April 2018 Radiotherapy

Thanks Helena, really helps for me to know this as my first session is on the 10th. I'll make sure I avoid cream and apply cream through the day after each session which are scheduled for 8.45am. I'm going to go to my local health food shop and get some aloe vera gel , I've used that before when I had 'real' sunburn from a holiday.

I've heard that drinking fluids helps- water that is,  rather than the stronger stuff!

 

I'll let you all know how I'm doing, thanks for the support,

Lin xx

 

 

Member

Re: April 2018 Radiotherapy

thank you, I think all the waiting to begin is making things more fraught, hopefully i'll feel a bit better after this week.

Lin x

Community Champion

Re: April 2018 Radiotherapy

BizzyLizzy

 

Like everything in our treatment plan, the first one is always the worst because it is fear of the unknown, but once you have got that one under your belt it is a lot easier.

 

Drinking plenty of fluid helps with the potential fatigue from the dehyration effects of the rads, I was told a good 2 litres a day.  As always just listen to your body

 

Good luck for tomorrow xxx

Member

Re: April 2018 Radiotherapy

Morning all

 

Nat - as others have said, it is normal to have 'bad days', it would be more worrying if you didn't - having a good cry often makes you feel better.  It does for me, although the red nose and eyes look doesn't exactly enhance the current chemo look!!

I think in some respects it is easier for us chemo girls to go thru the rads, because in comparison it is so much gentler on us and over and done with in 3/4 weeks rather than drawn out over 18/24 weeks.  But it doesn't detract from the fact that rads are an assault on your body and one which your body will kick back against.   

None of us planned for this bump in the road, and none of us want it, but we have it and have to get over/round it as best we can, but as I said, you are allowed to have times when it all seems insurmountable.  

We are all here for each other - so moan and weep away and we will all hold your hand, virutally, as best we can.

 

Bizzy - getting the first one out of the way is a biggie and sets your mind at rest, I've only had 4, but I'm already into the swing of it - another week and it will be my new normal!

 

love and hugs to everyone

 

xx

Member

Re: April 2018 Radiotherapy

I start Rads in the morning and feel that I have in my usual anxious state built it up to be so much more scary than in reality it may be - 

have good movement and can breath hold as it's on the left- but the whole environment of the hospital in it's self is so depressing which of course it will be as it is a cancer treatment centre and there are so many people less unlucky than me and I feel guilty.

as I have ME and am already tired after two surgeries and the numerous appointments we all have to go through I am a worried about the fatigue that so many describe and how this affect me as well as the side effects of the Rads.

i have my Aloe lotion and E45 and am prepared to drink the recommended 3Litres of water.

think after the first treatment I may not be so fearful.

hope all of the rest of you are doing well as expected x 

Member

Re: April 2018 Radiotherapy

Hi Nat sorry your feeling down today. Though I'm sure all of us I've had those moments where we're fed up with it. I know I have. I just wanted my life to be normal again. I'm 34, I have a job that I really enjoy. I have loads of hobbies that I had to give up whilst having treatment. I've got 2 years of zoladex injections and 10 years of tamoxifen to look forward to. Though now I am returning to normal. I've been back at work since the beginning of March and am returning to my hobbies. It's like normal just a bit different to how it was before. Don't beat yourself up for having there moments we've all had them. Take some time for yourself. Do something you enjoy even if it just going for a short walk.
I hope you manage to enjoy your day x
Member

Re: April 2018 Radiotherapy

I feel bad posting this as everyone on this thread is so brilliantly cheerful and positive- but I’m feeling so low.

 

I’m sitting on my sofa unable to stop sobbing! I’m not sure why now - I’ve been so positive til now - and all through diagnosis and surgery (I avoided chemo as my Oncotype test said it wasn’t needed) but with starting rads tomorrow I’m just so fed up with this cancer journey. My Letrozole side effects are horrible (been on it 7 months now as they put me on it neoadjuvant last summer). Woke up this am with my hands so stiff it was painful to get dressed. I feel knackered all the time. I’m only 46. Yet I haven’t even been through the chemo most of you have, so I feel really weak for being tearful when you’re all so positive!

 

The thought of going into hospital every day for the next four weeks, and 9 1/2 more years of hands that don’t work and constant fatigue (on top of the other side effects) just makes me want to get off this bus. But we can’t, can we! And my lovely husband has just for a fortnight on a work trip which he couldn’t cancel. He cancelled all his work trips last autumn for me and couldn’t miss this one. So I feel really alone. 

 

Sorry to lower the mood of the thread. 😢

Member

Re: April 2018 Radiotherapy

Thank you Butterfly x I was surprised myself to receive a letter so quickly! x

Member

Re: April 2018 Radiotherapy

Glad you got your dates so quick Jencat. Xx

Community Champion

Re: April 2018 Radiotherapy

Dusty don't worry yourself too much as most of us don't have any severe reaction to rads, I'm hopeless at applying any lotion as I hate the feel of it on my skin 😝 I used Aqueous cream at least once a day but as Helena says not just before treatment, I usually did it after my shower in the evening and I had nothing worse than a mild sunburn effect , I actually was sunbathing 3 weeks later with no problem at all Xx Jo 

Community Champion

Re: April 2018 Radiotherapy

Dusty

 

I was told not to apply any cream less than 2 hours before my rads session.  I used to take a bottle of E45 with me and when I was getting dressed again I would apply it then. 

 

They recommend that you apply the moisturiser twice a day at least.  I used 99.9% aloe vera as well as it was lovely and cooling, especially if kept in the fridge.

 

I was told to drink a good 2 litres of fluid a day as it helps with the dehyfrating effects of the rads which can potentially cause fatigue.

 

The best thing to do is to listen t your body as it will tell you when you need to rest and if you are concerned in any way about anything just ask your rads team each day, they will be keeping a good eye on you and will advise you accordingly.

 

Helena xxx

Member

Re: April 2018 Radiotherapy

Thank you for your reassuring reply Lesley. I got my rads letter today-very efficient as I only went yesterday! I've got CT scan on 17th and rads start on 30th, so I just get into the April rads group! Smiley Happy I've got a feeling that I might be starting on the day you finish?! x