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January Jems starting radiotherapy in NY

257 REPLIES 257
Mand
Member

Re: January Jems starting radiotherapy in NY

Hi j
ashbymeadow
Member

Re: January Jems starting radiotherapy in NY

Hi Mand

Well re your course i have signed up for the 6 weeks of 2 hrs per week mac millan course starts in May.

I did enquire from the same lady about your course and she said she would enquire and phone details today.

I find my hair is so course looking yet feels soft.

Tiredness like yourself  .i pace myself each day ..plenty of rests ,but also doing most other things.

Flushes occasionally .I do hope they will soon sort the flushes for you.I had the same experiences but back around Christmastime.They were awful at night and sleep impossible..some lasted an hour.I do sympathise.

I am now waiting to see oncologist appt due any time...5 weeks since radiotherapy.

Keep smiling

Jacqui

ashbymeadow
Member

Re: January Jems starting radiotherapy in NY

Hi Beatrice

Well we are it seems gradually returning to what we can only think normal life is...after our battering mentally and physically.I has not been easy in so many varying ways.

Fortunately my skin has been fine.

I do however like you have the odd flush...i am taking tamoxifen as i have osteoporosis so it is better suited for that.

The tiredness too such a nuisance but again i have to pace myself

Enjoying doing some hand sewing...patchwork that i started 20 yrs ago.

The weather improving too and the spring flowers so lovely

We must all chat on hear occasionally as it maybe that someone will need encouragement

Jacqui

Beatrice13
Member

Re: January Jems starting radiotherapy in NY

Hi Mand

 

I signed up for the workshop very early on and was told I would be allotted a space in November 13. But having not heard any more I phoned again in January and they are now saying June this year! But hopefully it will happen and I'm glad you got something out of it.

 

My skin too is healing and looking less like a car crash - are you using Polymem dressings? They are really good. The fatigue I agree is not great and when you add in the joint pain which is also affecting the muscles of my chest it isn't great. I am assuming that is the anastrazole but plan to keep going with it until I see my oncologist in early April and if it is really intolerable I shall ask what the alternatives are. I have a few 'warm' sessions through the day but not really sweats so I sympathise with you on that - so uncomfortable especially when the weather finally warms up.

 

Glad you are looking forward to a return to work and hope everyone else on this thread is coping and moving forward. Be good to hear from some of you.

 

Beatrice x

Mand
Member

Re: January Jems starting radiotherapy in NY

Hi Jacqui and all you other lovely ladies,

The workshop was good and if you get the opportunity of going to one then you should. Lovely products too were a bonus.

How is everyone. I hope you are all recovering from the treatment. I'm still healing from the burns and having to put the dressings on but it appears to be healing thank goodness.

The tiredness is not great. If I go out somewhere it takes me a day or two to recover. I wake as if I haven't had a sleep! The tamoxifen isn't helping. I can have up to 15 during the day and then between 3 and 5 at night. My whole body is drenched in sweat - not nice.

I'm meeting my manager today re my return to work. GP has signed me off until 31 march so hoping to go back beginning of April. Having th sunshine return definitely lifts my spirits.

I hope you are all doing well.

Love Mands xxx
ashbymeadow
Member

Re: January Jems starting radiotherapy in NY

Hi Mands,It was good to see your message i have been thinking of you .Do hope the sores will soon heal.Do let us know about the workshop today and who organises them.I still have the tiredness and lethargy hope it soon goes.Waiting for oncology appt now,Jacqui xx
Mand
Member

Re: January Jems starting radiotherapy in NY

Hi all you lovely ladies,

Hope you're all doing okay. I haven't been on for a while. It's been about 3 weeks now since finishing the treatment. My burns under my boob got very severe at the end and I am still having to dress it daily now!

I suffered the exhausted feeling too but I am hoping I am through that now and beginning to pick myself up a bit more.

Today I'm going back to Harley Street for the looking good feeling better 2 hour workshop. I'm looking forward to it as I have heard many ladies on the forum have said it was excellent.

Wishing you all the very best ladies. Take care of yourselves.

Love Mands xxx
ashbymeadow
Member

Re: January Jems starting radiotherapy in NY

well done Gill.It is a long haul this journey.I am pleased to hear you now recovered from the tiredness and feel normal again.

I finished Rads 16 days ago so still have the tiredness but you have made me realise that worn out feeling does pass eventually.

Jacqui x

venice25
Member

Re: January Jems starting radiotherapy in NY

Hi I have had 15 rads which finished 4 weeks ago. I was very sore underneath the breast and had broken skin in the end i didnt use any creams and just bathed the skin in warm water and all healed well . Energy levels have increased no longer feeling tired and am shopping cooking cleaning again without problems joy !!

I never thought i would write a reply like this as I have had afew complications re chemo it was always 1 step forward and 4 back but am glad to say normality is beginning to reign you will get there believe me love Gill x

max38
Member

Re: January Jems starting radiotherapy in NY

hi all - have had 15 full breast rads and now had 3 of 8 boosts. my nipple is very tender and sore. does anyone have any good ideas about looking after it? i am worried that by the time i have the final 5 boosts its going to be very painful indeed.

also - im beginning to feel tired now for the first time since the rads began - and i notice people writing that the become more tired after the sessions finish?  what can i expect

thanks to everyone here on the forum

max

Nally
Member

Re: January Jems starting radiotherapy in NY

Why when I finished radiotherapy on 27 January do I take until now to feel soooooo tired?

Sob...
Nally
Member

Re: January Jems starting radiotherapy in NY

Well girls, I'm now 19 days post rads and very nearly finished itching. So I've been to Leeds today and done some BIG retail therapy. With a bit of insurance money. It involved diamonds. It feels very very naughty and is extremely out of character. But my 'character' is different now to six months ago and I I don't care that it feels naughty. It's very nice and I feel like I have something lovely as an end to this difficult phase of my life?

Hope the rest of the January Jems are recovering ok from rads too x

Big hugs to you all x x x x
ashbymeadow
Member

Re: January Jems starting radiotherapy in NY

Hi Beverley

So pleased you now have your life back.It must seem very strange your journey of treatment has been longer than mine and mine seems to have been long.I do hope you will be able to pick up where you/we left off before our nightmare time.

Hope you will continue updating on here how life is going

Jacqui

x

 

Kipper107
Member

Re: January Jems starting radiotherapy in NY

So thats it for me, 8 chemo, 2 operations, 23 radiotherapy sessions.  Don't have to see my oncologist for 5 months so I guess I am better 🙂

 

All feels a bit surreal at the moment, can hardly believe that something that has completely filled my world is over but I think I can get used to it.

 

Thank you to everyone who has read my posts and replied, I really appreciate the support.

 

Beverley

Guest user
Not applicable

Re: January Jems starting radiotherapy in NY

Hadders, welcome to the forum. Wishing you the very best of luck for your surgery. When you feel up to it pls keep in touch with us and let us know how you're doing and ask any questions you need too. Lots of love, xxx ooo
Kipper107
Member

Re: January Jems starting radiotherapy in NY

At home, a bit tired and sore but OK.  Still trying to get used to my mini boobs 🙂

 

hadders
Member

Re: January Jems starting radiotherapy in NY

Hello everyone.  I'm just starting on this journey as I was diagnosed last Thursday.  I will be having WLE with sentinel node removal next Monday, with radiotherapy at some point later.  

 

Just wanted to say thank you for sharing your experiences in such frank and honest ways.  I feel that difficult times are easier to cope with if you know what to expect - and have found it frustrating not to be able to get a clear answer about possible effects (must stop googling!)  From reading your posts, I feel much more prepared for what is to come.

 

 

Wishing you all the best, whatever stage you are at.  Love and cyber hugs xx

fimbo123
Member

Re: January Jems starting radiotherapy in NY

That's wonderful news Kipper - so glad it was able to go ahead xx
Nally
Member

Re: January Jems starting radiotherapy in NY

Excellent news!!!! X

ps. I'm 14 days post rads. Definitely lots less itchy today 😊
ashbymeadow
Member

Re: January Jems starting radiotherapy in NY

Well done.what a relief for you that the op is over.sleep well and relax now

Jacqui

Kipper107
Member

Re: January Jems starting radiotherapy in NY

Hi

Just an update, operation all done and from what I can see looks fab! Bp was actually the lowest it's been all week - think it was relief it was all happening.

Just to give you an idea of size of op nearly 1 kg of flesh removed and I am still and cup. I may well have the nicest boobs I have ever had in my life!
Beatrice13
Member

Re: January Jems starting radiotherapy in NY

Quick update on me at the end of RADS in case it helps anyone else.

 

I am so grateful that I've been given the chance to receive treatment but was consistently unimpressed with my radiotherapy department. At the final session on Friday last week my skin had started to break down on the collarbone having had 15 blasts to that area as well as the breast. I had no access to skin care nurse/team and no-one particularly had time to study my skin reaction during treatment.

 

I was given a single PolyMem dressing which is non adhesive and told to apply that and get some more supplies from my GP. Fair enough but one dressing has hardly been acceptable for the entire weekend. After applying the PolyMem the moist oozing from the area became much worse and felt uncomfortable. I did entirely the wrong thing then - bathed the area with luke warm salt water. This was very soothing and the oozing stopped immediately but that is not good. I have spoken to the hospital this morning and they tell me that there is an ingredient in the dressing which actively draws out the moisture and that enables the healing process from inside - out as the good cells start to renew. The process can take 2 weeks or more and you can expect it to become worse before it gets better.

 

Most important - discontinue any moisturising creams to the broken skin area and only bathe with luke warm water.

 

Hope this helps anyone out there experiencing the same. If only they could have given me the information at the time!

 

Thinking of you all

Beatrice x

 

 

Guest user
Not applicable

Re: January Jems starting radiotherapy in NY

Hi Sisters! Just finished 25 treatments last Weds. Coped by getting into a routine. Crossword book and magazines for the train and radiotherapy waiting room. Banana immediately after treatment to combat nausea. Putting cream on immediately after treatment.

As the days progressed and my skin got more sensitive I started wearing bras inside out, then wore pyjama tops, then had to wear them inside out with no bra. I got skin reaction from day 20. My skin was great up to then but changed suddenly. That night I could hardly sleep because skin was so itchy. The next day the radiographers sent me to the skin care nurse who gave me ointment and lovely soothing silicone non-adhesive dressings which are very soothing. I went to there every other day plus i was checked by doc who prescribed hydrocortisone cream for a week for the itch and prickly heat. The skin reaction continued to get worse until the end and four days after finishing treatment it's still getting worse but there's very little pain so don't be frightened. I was supposed to go to the treatment room at my health centre on Fri but I had an urgent appt with my MP who I have waited months to see so I'm going tomorrow, Mon instead.

When I was leaving the hospital for the last time I felt very weepy and so did the radiographers, I had a good experience with them, I know that not everybody does, but I was lucky enough to get angels.

. Mand, my heart absolutely goes out to you. Pls keep us posted on skin reaction.

Now that my treatments have ended, apart from recon op's and Tamoxifen I have read that there can be a huge void suddenly in your life so I enrolled for some courses in our local MacMillan Centre. Have started two courses and met wonderful people, would highly recommend this if it's something that you can get to.

Pls keep posting with your updates and questions my lovelies, we will get through this together. Xxx ooo
Guest user
Not applicable

Re: January Jems starting radiotherapy in NY

HFK, please keep us all posted on this thread, will be thinking of you. It was the same uncertainty regarding rads following mx with me but eventually they decided to go ahead with 25 treatments to chest wall. It was tough at times but to me well worth it for the extra peace of mind. I'll keep checking in to see how you're doing. We're all with you every step of the way. Hugs xxx ooo
ashbymeadow
Member

Re: January Jems starting radiotherapy in NY

is this burning since you completed treatment?if so when did you stop.?wandering if i have this to come.i finished last Tuesday
Jacqui
Nally
Member

Re: January Jems starting radiotherapy in NY

Me again.

Hanky on boob. Frozen peas on top. Heaven .....
Nally
Member

Re: January Jems starting radiotherapy in NY

ps. Wasn't aware I was stuttering !
Nally
Member

Re: January Jems starting radiotherapy in NY

Nothing scientific here, but it all itches a LOT LOT less after some wine ....
Nally
Member

Re: January Jems starting radiotherapy in NY

Nothing scientific here, but it all itches a LOT LOT less after some wine ....
HFK1234
Member

Re: January Jems starting radiotherapy in NY

Hi all!

 

Hope you're all doing well!  

 

My appointment for the plastic surgeon hadn't been made!  If I hadn't have chased it on Wednesday, goodness knows how long I'd have been left for?  Anyway, luckily I did chase and they have now booked me in for Friday 14th - what a lovely valentine's day I'll be having!

 

I'll definitely keep you all posted with the developments.  

 

I'm keeping myself going by thinking of the lovely expensive dress I'm going to get myself after my lypo!  I'm trying to fool myself into thinking that I'm a celeb - sounds so glam "I'm off to see my plastic surgeon" - but then I get a wake up call when I remember why!

 

I may still have to have rads after the surgery, they can't tell me at this stage (am so getting used to that).

 

Take care all.

 

H xx

Beatrice13
Member

Re: January Jems starting radiotherapy in NY

Hi everyone

 

Had my last treatment today - fairly uneventful and I have a 'leaving present' of a bad burn on my collarbone which is now oozing Woman Sad Small price to pay for the rest of my life though!

 

Mand I hope your soreness eases soon, sounds a really nasty experience. Did they give you dressings or do you have to pick them up from the GP? The hospital gave me a single dressing and I had to rush back home to my surgery so they could order me some more for Monday. 

 

Kipper hope your BP improves quickly its a vicious circle though isn't it? The more you stress and worry the worse it becomes. I've had high BP for years with little success of control. Ironically through the whole BC experience - surgery, chemo and rads it's been really good. Keep positive love if you can and hope all goes well on Monday if the surgery goes ahead.

 

Magical Moon, haven't heard of the shoulder problem before and truly sorry for the horrible pain. Just when we think we know where we're going with this journey it throws something else crappy for us to deal with. Hope your pain improves very soon.

 

HFK that is really tough having to have mastectomy when you thought surgery was behind you. Can't imagine how disappointed and upset you must feel. Please let us know how you get on.

 

Well done to all of you on the RADS experience - yes easier than chemo but not a pleasant experience at all. Electronic hugs to you all, hang in there we now have to recover and try to be ourselves again instead of a 'patient.'

 

Beatrice x

 

 

 

Magical_Moon
Member

Re: January Jems starting radiotherapy in NY

Thanks Fimbo. 🙂
Congrats on finishing your treatment. It is a good feeling knowing you no longer have to get zapped every day!!!
Peace and Positivity,
M 🙂
fimbo123
Member

Re: January Jems starting radiotherapy in NY

Magical Moon, really sorry to hear about your shoulder. I hope the injection helps. It's scary that even after the treatment finishes it can still deal us the side effects.
I finished yesterday, haven't felt too weird emotionally yet. Went out for a meal with my family because it was my son's 10th birthday too, and it was lovely.
Kipper, I really hope your bp comes down for Monday. At least you have got all the time critical treatment done - I can imagine how disappointing and frustrating it would be to have your surgery postponed, but at least all the necessary stuff has been done. I know what you mean about being a loner - I think I have kept my distance from other patients too whilst going through treatment. I chat with my lovely June Jewels chemo thread ladies, but it's only now treatment has finished I think I might be up to going to a support group.
Huge congratulations to everyone who has finished, and encouraging hugs to those almost at the finishing line xxx
Magical_Moon
Member

Re: January Jems starting radiotherapy in NY

For all the ladies finishing their radiotherapy treatments.
I can definitely recommend the Look Good Feel Better workshops if there is one available in your local area.
The workshops are limited to a small group of ladies and last a couple of hours.
Demonstrations are given on how to apply makeup in a relaxed and friendly setting.
You are sent an invitation through the post.
In the workshop you are given an amazing bag of makeup products (some of which are top brands like Estée Lauder, Lancôme, Clinique) which is yours to take home.
It is sociable too and gives you a chance to meet other ladies who have gone/are going through BC treatment.
M 🙂
Kipper107
Member

Re: January Jems starting radiotherapy in NY

So I am really all done!

 

Last meeting with oncologist today and he doesn't want to see me for 6 months! He also said he has no plans for more tests in the future unless I have any symptoms.   I said a nice goodbye to the radtio therapy team after being so stressed the other day.

 

My blood pressure is still sky high and worrying about its not helping but I am hoping that my reduction surgery on Monday goes ahead.

 

Thank you to everyone for the support over the last few weeks.  I have been a bit of a loner during my treatment and my chats on here have shown me that I should maybe have been more open to meeting/talking to people over the last year. 

 

Spoiler
Cat Tongue

 

Magical_Moon
Member

Re: January Jems starting radiotherapy in NY

Mands,
So sorry to hear your burn is in a terrible condition. No wonder you are looking forward to finishing rads.
I just hope the medics can give you something to ease the symptoms for you and make the healing process faster.
I was distressed dealing with my radiation dermatitis but your radiation burns sound massively worst and my heart goes out to you.
Radiotherapy is 'doable' but it sometime comes with very 'uncomfortable' after effects.
Despite doing the arm exercises after my rads finished, I got Shoulder Impingement Syndrome/Rotator Cuff Tendonitis three weeks after my last rad session which has been very painful.
After much pain, worrying about having a steroid injection in my shoulder joint (BC side) and worrying about the possibility of developing Lymphoedema, my GP gave me the steroid injection yesterday.
My GP was very understanding about my fears of getting Lymphoedema. He reassured me that the injection went into soft tissue within a space in the shoulder joint and therefore didn't present the same risks as having systemic injections into the blood stream which could lead to Lymphoedema.
Shoulder joint and arm painful today but hoping steroid injection will start to work over weekend.
My breast surgeon referred me to physiotherapy and I had my first assessment yesterday at the hospital. Have been given more exercises to do before seeing the physio again next Friday.
I just want to feel 'normal' and move on from BC but these after effects have been a step backwards and have got me down.
Must practice my mindfulness. The sun is shining today and it is lovely to see the blue sky. What could be more uplifting than the golden rays of sunshine........... maybe a chunk of chocolate!!! 🙂
Peace and Positivity,
M 🙂

oaktreesea
Member

Re: January Jems starting radiotherapy in NY

Mand sorry to hear your skin is getting even worse. HFK sorry too that you're needing a further op. Kipper good luck with lowering the BP, hope your op can go ahead on Monday.

I've just had my last zap this morning, Hurray!!! just the "standing time" to get through now. Boob is now sore and also the armpit, it has been hard to get comfy in bed. Feel too tired to go out to celebrate but have got a nice bottle of wine lined up for later. Like Nally and Ashby I felt strange walking out of the hospital after my last one and saying goodbye to the radiographers. I bet next week I'll still be thinking I need to plan my day around going for my appointment!!

Well done to all of us January Jems who have got through to the other side of treatment and very best wishes for those of you who still have a bit of a way to go.

Oaktreesea x

Kipper107
Member

Re: January Jems starting radiotherapy in NY

That sounds really really painful, are they helping with dressings etc?  The booster thing caused me most pain but luckily no broken skin, I have been slapping copious amounts of e45 on, often 2 or 3 times in the middle of the night because I just can't sleep at the moment.  Not sure if it has impacted others but not sleeping has been one of my most annoying symptoms but strangely enough I seem to have got used to only a few hours a night.

 

Have spent today trying unsuccesfully not to get to stressed about work in an effort to bring my BP down.

Mand
Member

Re: January Jems starting radiotherapy in NY

Glad you are feeling a bit better today Kipper.

Two more sessions for me and I'll be done, I can't wait to finish. I have really had enough now of the daily trip to Harley Street and will be so so relieved not to have to make the journey after Monday.

Unfortunately, the burn has got a lot worse under my breast. It is now bleeding as well as oozing so it's not a pretty sight at all. Very painful. I saw the BC nurse again today and she has confirmed, what I thought, it is now coming up from under the breast to my cleavage area. This is near to the lump area that I am having the booster zaps. She said that it is the worst burn she has ever seen :-(.

I'm going to be skipping down Harley Street after my last session on Monday :-).

Mands xxx
Kipper107
Member

Re: January Jems starting radiotherapy in NY

Feeling a bit better today.  The other nightmare yesterday was my private health care wanting £1000 co-pay for my surgery but today they have backed down and will cover it all.  My blood pressure is still high but hopefully will be sorted.  

 

I am taking it easy for the next few days - no gym for me 😞

 

I actually feel a bit strange that I don't have to go to the hospital today.  

Mand
Member

Re: January Jems starting radiotherapy in NY

Nally and Kipper, good to hear you spent the evening with good company. Take care both of you. 3 more days zapping to go now and along with the burn under the breast which is getting bigger I am now starting to get sore in the booster area :-(. I'm going to end up with a frazzled breast. Xxx
Nally
Member

Re: January Jems starting radiotherapy in NY

Well I've just had a catchup dinner at friends house with three of the girls. You know who your friends are when you are itching and they tell you to just get comfy. Which ended up with me naked from the waist up, with a tea towel soaked in cool water over my right boob. Heaven. Plus lots of chilli and plenty of cava ....

The conversation was normal even if I wasn't dressed!!
Kipper107
Member

Re: January Jems starting radiotherapy in NY

Thank you so much, in the end I went to a friends and we did drink the champagne and I celebrated what has been a long long journey.  I am hoping my blood pressure will reduce and my surgery can go ahead on Monday as planned.  I was just so disappointed that today did not feel the way I thought it would.   I am going to take it easy for the next few days and try and remember how far I have come.

Mand
Member

Re: January Jems starting radiotherapy in NY

Oh kipper darling, I'm sure you are fed up after the day you've had. What a bummer! Don't get too despondent though sweetheart. Try to have a relaxing evening. A nice soak in the bath with of course our friend - aqueous cream for company! Then have a nice lie on your bad and try to think of how far you have come in such a short space of time. We can't push our bodies to a limit that it just is not right to take it. I know you wanted everything sorted but try not to lose faith in your body guiding you sweetie. I doubt you feel like champers now, perhaps save for another date when you can celebrate feeling a bit more upbeat.

If I was with you now sweetheart, I would give you a massive hug and let you know how far you have come in this journey.

I am thinking of you and keeping fingers crossed for a better day tomorrow for you.

By the way, did I tell you that you're looking absolutely gorgeous :-).

Lots of love Kipper. If you want to talk to someone and someone that can understand how you're feeling then do let me know and I'll PM you my mobile number.

I hope I have helped you a little bit this evening and I've made you feel that you're not alone Hun.

Mands xxx
Nally
Member

Re: January Jems starting radiotherapy in NY

Am nearly out of the door so can't stop. Don't lose heart. A glass of bubbles may relax you somewhat? What about relaxation techniques before any more bp taken?

(What about a glass of champers before bp taken, for that matter )

I'm sure others will be more useful, but couldn't read and run .. X x x
Kipper107
Member

Re: January Jems starting radiotherapy in NY

So that will teach me!  Had my last treatment today but have to say I was so stressed I barely noticed it.

 

I have had a really awful day at work plus i then had my pre-op assessment before my last session.   Unfortunately the stress of work plus an awful drive to the hospital plus my white coat syndrome meant my blood pressure was sky high.  They are now having to refer me to the anaesthetist to see if I am well enough for surgery on Monday. 

 

Quite frankly I am devastated, I rang my gp and got an emergency appointment and they have increased my medication and I have to go back on Friday.  I am feeling so disappointed, my bright shiny day seems to have disintegrated.   Not sure I feel up to champagne now 😞

 

Mand
Member

Re: January Jems starting radiotherapy in NY

H - stay in touch with me via PM. I'd like to know how you are getting on. Love Mands xxx
Mand
Member

Re: January Jems starting radiotherapy in NY

Kipper - I'll be listening for that bottle popping its cork later on! Hope you got on at your last session okay sweetie. Mands xxx
ashbymeadow
Member

Re: January Jems starting radiotherapy in NY

Pleased to hear that you now on last day of treatment.Have you been told to continue for the next few weeks with the daily moisturising etc.

I felt odd when i left after my last session

Hope all goes well for you

Jacqui

 

Boxofrogs
Member

Re: January Jems starting radiotherapy in NY

Hi all, I'm off for my 25th and last zap. My skin has held up pretty well. I used aqueous cream as a substitute for soap and I think this has helped. I haven't been super contentious re moisturising either.