69.3K members
1.2M posts
cancel
Showing results for 
Search instead for 
Did you mean: 

January Jems starting radiotherapy in NY

HFK1234
Member

Re: January Jems starting radiotherapy in NY

Thanks Mary. That's what I was trying to find out. But he couldn't tell me whether the cancer was hormonal but seemed sure I would need tamoxifen. I think he was quite rushed because he had to go to theatre.

I will see how I feel in a week and go fron there.

H x
mary32
Member

Re: January Jems starting radiotherapy in NY

Hi H

 

I can see that what he says makes sense, though the extra waiting is very hard for you. I think you are just a week on from your op so early days yet but there is no reason for you not to go back to work before rads start, if you feel well enough in a another week or two. 

 

You will only be put on tamoxifen if the cancer is oestrogen receptive.

 

Take care.

 

Mary

HFK1234
Member

Re: January Jems starting radiotherapy in NY

Hi Mary

 

Yes, it's grade 1, tubular.  But he wants to check that it hadn't spread to the nodes and that there was a clear margin.  He said the results would be back for my next consultation, today.  I know they are trying to make sure, but knowing this doesn't help.

 

H x

fimbo123
Member

Re: January Jems starting radiotherapy in NY

Beatrice, thanks for your lovely words. After a few weeks of feeling better, I had a bit of a low day today and your post really helped. Wise words xxx
HFK, I really hope you get your results soon. What a shame nobody told you beforehand you wouldn't have them today - they must know how worrying it can be. xxxx
I've been wearing the Primark equivalent of genie bras - they're comfy and have a pocket for my softie, and have a very wide band underneath so they don't cut in. Today's radiographer said it looked like that band was starting to rub the skin over my ribs so she advised me to try to find an alternative. To me, my skin doesn't feel sore (I am a very pale skinned Celt and my clothes always leave marks on my skin), other bras are much less comfy and I don't really want to go braless because of nowhere to put the softie. So at present I've put a scarf under the band to try to stop it rubbing. Has anyone else who's had an mx had this problem?
mary32
Member

Re: January Jems starting radiotherapy in NY

Hi H

 

How frustrating! When was your surgery and did the consultant say when the results would be available? Do you have any info about your cancer, grade stage etc?

 

Mary

HFK1234
Member

Re: January Jems starting radiotherapy in NY

Hi everyone!

 

Well, I've just come back from seeing the consultant and feel completely disappointed!  He didn't have the results back yet!  So I am none the wiser about whether I need to go on and have further surgery or whether I will begin radiotherapy soon.

 

Every time I asked him a question he just kept saying "don't worry about that yet - you are positive, you will be ok!!".  This isn't helpful.

 

They tell you to write everything down and ask at the appointments, so I did this, but was told not to worry!!!

 

I asked whether my cancer was hormonal - don't worry about that yet

I asked when I could return to work - don't worry about work, just take the time to get better!  Not helpful.

I asked when i would start radiotherapy if I need it - don't worry about that yet

I asked whether I would take tamoxifen - you guessed it - don't worry about that yet!!!

 

I feel frustrated as hell - what do I tell work.  Bearing in mind that I am on a fixed term contract until April - this is not good!  I'm not career orientated, but am realistic that trying to live on just my husband's salary is just not possible with three kids to raise.  Would I rehire me????  They can't let me go, I know this (I work in HR), as I'm now a protected characteristic but they are under no obligation to extend my contract.  I suppose the thing to do is to go onto sickness benefit, which is better than nothing.

 

Yes - baby steps, baby steps!!!!  I feel like screaming!

 

At least I can now have a bath now that the dressing is off!  My right armpit was a no go zone!!!

 

So I don't know whether I should keep posting in this bit, or where to post.  I will come back here eventually I guess, but perhaps I jumped the gun.

 

H x

Britbox
Member

Re: January Jems starting radiotherapy in NY

What a lovely post Beatrice..I think you spoke for many of us, and echoed our feelings, certainly mine.

Off today for round 6, and feeling very optimistic because so far, none of the dreaded side effects have kicked in. Skin holding up really well, without even the merest hint of burning. Hopefully it continues like this, and I can start to reclaim my life, return to work, and put Clive Cancer into a little box marked 'Closed' in the back of my mind..He's dominated my thoughts for way too long. Every session I imagine a little bit more of him being killed off..Clive, I swear I can hear you screaming, and it's music to my ears. 🙂

Have a good day everyone, and hope all your rads sessions go without a hitch.

Maz. Xxxx
Nally
Member

Re: January Jems starting radiotherapy in NY

Hear, hear x x
Beatrice13
Member

Re: January Jems starting radiotherapy in NY

Hi all

 

HFK - glad you found that paper helpful even if scary. 

 

I am no super woman and believe me I've had my moments on this very life changing journey but on balance I am a very lucky individual and there is absolutely no way that life remains the same for any of us whether we have cancer or not. If it were not BC if might be an equally scary and life challenging illness. I hate my cancer and my surgery scars and the fact I have a touch of lymphodema which can't be reversed and worry what long-term effects the chemo has kindly left with me. I also worry about the numbness in my hands and feet - will feeling return? etc. I feel sad that my appearance has changed and I hate my white post chemo 'fuzz' which is an apology for the head of hair I nurtured and cared for every day. But I'm not 21 any longer and my appearance has steadily deteriorated in the usual way through age and too much food and drink so who was I kidding anyway about my looks?

 

However, throughout I just tell myself that all this is just 'my turn' and so many others on this journey will be told that no help is available - how shocking and final would that feel?

 

Our futures, healthwise, can not be determined or changed but for the moment let us all embrace the fact that we're moving on slowly - and its miserable sometimes - but we're in a much better place now than we were at diagnosis because a lot of the bad stuff is in the past.

 

Worrying too much will not change anything and all we can strive to do is take the best care of ourselves from this moment on and take all help and encouragement that we are offered. I like many of you, have cared for and supported loved ones through ill health, mainly cancer and lost my dear aunt, beloved cousin and recently my wonderful lovely mum and still I smugly believed I knew how they must be feeling. How wrong I was and realise now I knew absolutely nothing. So post diagnosis, surgery and chemo I do at least feel qualified to offer help whether practical or emotional and wonder if I can actually treat this journey as a life enriching experience - I can probably be more help to someone else than ever I was before?

 

Sorry to waffle on. Please have courage ladies and let us link electronically for a huge group hug and well deserved pat on the back for our ability to get this far.

 

Love and regards

Beatrice x

Magical_Moon
Member

Re: January Jems starting radiotherapy in NY

Hi Kipper,
I went to a Feel Good Look Better workshop on 14 January.
I have lost my confidence and felt I needed to challenge myself and mingle with people again.
It was a good first step since finishing my rads and being in a safe environment with all the other ladies who had been affected by breast cancer.
Like you, I felt very emotional when some of the ladies removed their wigs. I was pleased they felt able to do so and felt at ease amongst all the BC ladies who would understand how difficult it must have been for them to lose their hair.

Mands - Pleased to hear you have booked to go on the workshop and you are doing OK with your rads. The 'goody' bag of cosmetics was amazing. Didn't expect so many products.
lizzy22
Member

Re: January Jems starting radiotherapy in NY

Hi everybody  went for my planning appointment for radiotherapy yesterday.Start my radiotherapy next Monday for 3 weeks.Just be glad to get back to normal and hopefully go back to work next month.I think its what I need.

 

Hope everybody is doing well in their treatment

Kath xx

Mand
Member

Re: January Jems starting radiotherapy in NY

It's about time we got some perks out of this journey lol. I'm glad it was beneficial for you. Whilst I was having my massage today I was thinking this is the first time throughout this journey I actually feel like I am getting something back. We need to treat ourselves more lol. Hope tomorrows treatment goes well. Sleep well. I'm hoping I'll sleep better after 6 miles of walking over the last two days 🙂 xxx
Kipper107
Member

Re: January Jems starting radiotherapy in NY

It was really good. For various reasons it was also the first time I met other women with breast cancer face to face. There was a moment where people took their wigs off that reduced md to tears. I have an inch or so of hair now and it was really emotional seeing other people and remembering how I felt about my hair etc. don't worry the wig thing us optional but they do their best to make it a safe place so people can relax. You get a great kit to take away too which is a nice bonus.
Mand
Member

Re: January Jems starting radiotherapy in NY

Kipper, I'm booked on one of those sessions. I can't wait. I understand it is a great workshop. Xxx
Mand
Member

Re: January Jems starting radiotherapy in NY

Hi Jacqui - you've finally caught up with me sweetie lol. Good luck for tomorrow. I've sent you a PM which might help you. Take care. Much love. Mands xxx
ashbymeadow
Member

Re: January Jems starting radiotherapy in NY

Hi everyone on the January radiotherapy treatments.

Well at last i am on track with you all.

Start my 1st treatment tomorrow Phoned to ask when i start as CT  was done 2 weeks ago.

Hospital say my  dates all posted the 8th January and 1st session 11am tomorrow.Glad i phoned as would have been distraught messsing them about and loosing my slots for the next 3 weeks.

Do keep posting as its good to know what might....happen

Jacqui

Kipper107
Member

Re: January Jems starting radiotherapy in NY

Today was a nice day. I had my treatment early to allow me to attend the look good feel better session. It was really good fun . I also had the radiographer chat winch was ok but they are very keen I slow down a bit as I am working as well as treatment. I am planning on seeing how things go.
Mand
Member

Re: January Jems starting radiotherapy in NY

Evening all you gorgeous ladies. We are growing in numbers!

Day 4 today and I walked the 3 miles again. Walking in the sunshine definitely lifts your spirits. It's a very positive influence I have to say. Just wish it helped the insomnia!

I had a lovely aromatherapy massage after my treatment today and it was the first time since diagnosis that I truly felt relaxed. I was a bit worried about lying on my front but I had a pillow below my chest line and it was very comfortable. I had the neck, back, arms and legs massaged and I have to say I felt completely relaxed I thought I was going to do a "pop" at one time - wouldn't that have been embarrassing lol.

Last week I requested an image of my breast that I had seen on the monitor when I went in for treatment and I got it today. I think this will help me think of my breast as cancer free. Well I hope so as I can still vividly remember the white mass where my lump was on the mammagram screen before diagnosis. I knew at that stage I had cancer. So positive thoughts now that I am cancer free.

Again today they couldn't position me correctly but they were so nice about it and continually apologising. It's only happened twice now but I can really understand ladies getting upset by being pushed and pulled in different directions.

Re the fatigue and the side effects etc. We are all different and will be affected in different ways. Physically and mentally we have all had a difficult journey to get where we are now. Personally for me I have gained great support on this forum. It has been my only support really as I don't have anyone close by. At the beginning I thought as most of us thought - how the hell am I going to get through this! But, I am getting through it and I now see a light at the end of the tunnel. Yes, I have to have more surgery in May/June but I am so proud of myself that I have got to NOW! People tell me that I am a strong woman and I have at times doubted that but I now believe I am a strong woman! As all you lovely ladies are.

I'm eager to get to the end and start to readjust back to my life which I know won't be as before but I so now know that I will be more enriched by this journey and won't take my life for granted. I do count myself lucky!

Sorry ladies, I've gone on a bit here but I just wanted to share with you how I am feeling.

Watch this space - I'll be bloody crying this time next week lol.

Have a lovely evening ladies and if you get the chance to or someone ones to treat you - do try an aromatherapy massage. It has really helped me today.

Love Mand xxx
Nally
Member

Re: January Jems starting radiotherapy in NY

Thanks for that Fimbo.  I think it just knocked me this afternoon.  Shouldn't have let the misery knickers radiographer get to me Smiley Tongue

 

I've had pizza and alcohol free beer so I sort of feel better now.  I'm going to go into 'bloody minded' mode again soon.  I'll do my very best to show her.  I'd love to sail through the 'tiredness' bit and be able to stick a couple of metaphorical fingers up to her.  Yes, I know it's childish, but yes, it makes me feel better. 

 

I'm a bit itchy this evening, but I think I'll hold off exposing the hot tit until after my dad has been for a visit?

 

Have a good evening girls.

 

x

fimbo123
Member

Re: January Jems starting radiotherapy in NY

Hi Nally,
I see my onc weekly during rads at his "one minute rads clinic" (one minute said pointedly as I always ask so many questions!). Last week (after no. 6) I asked him when I could expect the fatigue to kick in. He said that as I had chemo before surgery my body has had time to recover from chemo and I might get away with not suffering at all. So there you go. The longer I go through all this, the more I realise they don't always know. Don't let them get you down - you are you not any other patient and they have never treated you before so they don't know how you'll be. It sounds like you're doing all the right things and I'm convinced it makes a difference.
Rant over. I just get annoyed when the medical professionals imply there's nothing you can do to help yourself. I'm doing lots to help myself, and in the context of a long recovery from chemo, I'm planning on finishing rads feeling better than when I started :-). Hope you've recovered your self belief. xxx
Nally
Member

Re: January Jems starting radiotherapy in NY

Oops. Managed to post twice. Have added healthy (ish) pizza to the DVD plus alcohol free beer. Roll on bedtime lol
Nally
Member

Re: January Jems starting radiotherapy in NY

Hmmmph!! Been all positive about the rads. No 6 today plus a 'review' with a senior radiographer to see how I was doing. Pretty much insistent that I will feel fatigued by the end of the treatment. Told her about all the positive things I was doing and that oncology chap had said there is nothing in the treatment itself that should make you actually feel tired. She almost dismissed this.

Ok, I know I MAY feel rubbish later, but does she have NO idea about diet, exercise, positive thought? I appreciate she needs to give correct information but I came out feeling really low and I rarely do that 😞

Not a positive afternoon. Am off to watch reruns of Greys Anatomy ..... That will make me feel better x
HFK1234
Member

Re: January Jems starting radiotherapy in NY

Hi Mary

 

Thank you for that reassurance, it has really helped.  I can see how work can act as a distraction, it certainly helped me prior to the operation.  I delayed my op so we could have a nice Christmas, it would have been awful if I didn't work during that time, I really would have dwelled.

 

To be honest, I think that's what is happening to me now, dwelling!  It's not good for me.  My mind goes way off and thinks about the unnessary.  Work have been fantastic and supportive, so I'm sure if I am late in due to fatigue, they will understand.  If I can, I will get my zaps done as late as possible so I can work earlier in the day.  I had just literally started the job when I got diagnosed, what timing!  

 

I've just been for a walk and it's done me a power of good, I feel brighter already.  It's such a sunny day, I really wanted to have some of those rays on me and it has helped.  

 

Still feel out of it though!  I'm such a light weight with pain killers!

 

H x

 

 

 

mary32
Member

Re: January Jems starting radiotherapy in NY

Hi

 

I finished rads mid-November and just wanted to let you know how I managed working and rads. I only had 3 weeks and arranged my appointments for the afternoons. So I would go into work in the morning as usual and then leave around 2pm. The hospital was just a short train ride away so quite easy. I ended up doing 4 mornings a week during that time and by the end I was getting quite tired on the way home. But as everyone says, at least part of that is just down to traipsing to the hospital every day. At Guys there was often a wait of up to an hour so that in itself can be wearing.

 

As HFK says it is something to try and if it doesn't pan out then fair enough. I needed the normality of work and the distraction so it worked well for me. Some mornings it was definitely a huge effort to get going but first thing was when I had most energy so I tried to make the most of it. At the end I waited for the dreaded fatigue which is often mentioned but although I was very tired and worn out I wouldn't describe it as fatigue.

 

I would say I'm mostly recovered and I have my end of treatment appointment on Thursday which I'm looking forward to!

 

It is very hard to take it all in and accept it, I had great difficulty for a long time, was dx in June but didn't have surgery till September for various reasons, and I was only just starting to come to terms with it by then so if you start treatment/surgery very soon after dx it's no surprise that it is still hard to take on board.

 

Take care everyone and I hope the treatment treats you well.

 

Mary

HFK1234
Member

Re: January Jems starting radiotherapy in NY

Hi everyone!

 

Mand - I've messaged you back, thank you for sending that through.

 

Beatrice - I read the attachment on the link, wow, that was both helpful and scary at the same time.  It's made me realise that my life will never be the same, I will never be the same, but I still feel like I'm a long way from accepting that.  It really feels as if this is happenng to someone else, I'm just observing.  It must be some sort of self protection.  Or it could just be all of the pain killers I'm on after the lumpectomy!  I think I will need some counselling at some stage.  I will print it off and keep reading it  I think.

 

I will find out tomorrow about when I start my radiotherapy.  I know I supposed to take baby steps right now, but I am so anxious about how I am going to manage working during the treatment.  Anyway, like my husband said, I've just got to give it a try then if it's too difficult, deal with it then.

 

H x

Mand
Member

Re: January Jems starting radiotherapy in NY

HFK - I've sent you a private message H. Mand xxx
Mand
Member

Re: January Jems starting radiotherapy in NY

Hi ladies

Welcome to HFK and all you new ladies that have joined us here. I am so glad to hear that this thread has been beneficial to some of you and really pleased that I started the thread in December. Personally, I felt that the monthly chemotherapy thread was so useful and I know a lot of ladies gain support from others that are going through the same together.

Magical moon - lovely to hear from you again. Sending you a big hug sweetie.

I am day 3 today and only another 20 zapping sessions to go! I too am suffering from the hot breast but then I have done since surgery because of my seroma. I'm not sure whether it is the seroma getting bigger or just swelling from the radiotherapy treatment but already I am changing shape again!

Today was a longer session because they couldn't size me up properly to the machine but I didn't panic as I had read here that it often happens. Also, I had walked just over 1.5 miles from London charing cross to Harley street and was just thankful for the longer lie down lol. I was very proud as I walked the return journey too which meant I had walked a total of 3 miles. I can't promise I'll do it every day but the exercise certainly made me feel good.

I am very upbeat at the moment and long may it continue. I think it had something to do with sleeping most of the weekend and catching up on some very bad insomnia nights I have had since NY.

Sending you a big hug and for those that are struggling at present, keep posting and letting us know how you are doing. You're not alone.

Love Mand xxx
Kipper107
Member

Re: January Jems starting radiotherapy in NY

Sixth session done and still feeling ok just have a very hot boob. Last Monday I felt terrible and very depressed by the reminder that I had cancer but have felt better and better since then. Am pretty worried that things will go downhill from here so trying not to make any major plans for when this is done. Have a work trip to Kuala Lumpur planned for mid February which I think may be very optimistic!
Beatrice13
Member

Re: January Jems starting radiotherapy in NY

Hi all

 

I agree Boxofrogs that it may seem a bit negative to criticise the radiologists and I try to be bright and cheerful at each session but I guess we're just dealing with human nature as in any episode of life and my experience isn't turning out to be all that great to date. I am however chuffed that so many of you are having a good experience and hope it continues for you and I am sure over the next few days I too will be feeling better about the whole thing.

 

HFK - I too can understand completely your feelings and I also agree with all that Britbox says. You need to take as much time as necessary to start to feel 'normal.'  Back in November Maryland kindly posted the following link on a thread I started and it's an excellent paper which makes perfect sense. You may benefit from having a read of this. 

http://www.cancercounselling.org.uk/northsouth/extra4.nsf/WebResClient/1761049276601BD68025735B00604...

 

Take care ladies and have a good rest of the week with the rads.

 

Beatrice x

Britbox
Member

Re: January Jems starting radiotherapy in NY

Hello ladies.

Not been on since I started my rads last Wednesday, because life has been a whirlwind, and I've been mega busy. I hope you are all coping well, and seeing the light at the end of this dark tunnel we are all travelling along.

Found out last week that one of my lovely Boxer Dogs, (I have two rescues, mother and son) had a cancer too. it was on her paw, an MCT in a very awkward place around the knuckle, and had spread like an octopus, growing around the tendons of her foot...Very difficult for the vet to get clean margins, and he has suggested she should undergo chemo. ..So me and my poor old girl have been fighting he same battle.

In my last post I was feeling very down, but I think the fact that I've been nursing Ruby, my Boxer has taken my mind off of my own troubles, and my main concern and focus has been her..No time to wallow in self pity when you have an invalid to nurse!

Anyway, my Radiotherapy started last week, and today was session four. It's going really well so far, never have to wait past my appointment time, and am in and out in no time. I've not had a hint of any side effects yet, I know it's early days, but because of how sensitive my skin is, I was expecting some reaction early on. I'm using H&B Aloe Vera, it must be doing its job, because I don't even feel any heat in my boob like some ladies are starting to get at this stage. In fact I told the staff today that I think they have me there under false pretences, that they're blasting me with placebo rays, and just keep me for the entertainment value!!...I may be saying differently in a couple of days or a week when I look like a boiled lobster, or am sleeping more than Rip Van Winkle! 😉

HFK1234...I just wanted to say that I empathise totally with your post. Sometimes it's almost as if we feel the need to protect everyone else, our families, friends, and even the medical staff. Maybe it's because we are afraid to let them see our vulnerable side, and it's easier to paint on the smile, joke, and pretend we are Ok, and coping. You are certainly not being indulgent, or self pitying in how you feel. It's totally normal in my opinion. Life has delivered you a blow, and a massive shock.. You are allowed to weep, feel down sometimes and wonder what the future holds..We all do it.

It's good news that your consultant feels there's probably no lymph node involvement, so hopefully radiotherapy and the usual five years hormone therapy will be all you need, same as with me...I found the worst time was between my operation and starting rads. I had my WLE and SNB on October 16th, and have had all these long weeks waiting up until now to start treatment. Now it's here, I actually feel wonderful. I know every session punches the enemy in the gob a little more and brings me a little closer to delivering Clive Cancer the knockout blow, but, most importantly, me being able to return to normal, and claim my life back...If I ever was 'Normal' LOL

I work too, but have not been back yet, been off since my operation. My company has been fabulous, and told me to complete all my treatment, and only to come back when I feel stronger, well and ready...To be honest, although I have felt bored and a bit of a fraud at times being at home when I felt relatively OK, at this point, while I'm undergoing rads, it would have been impossible logistically. It's a bit of a mission to get to the Oncology Centre I attend, so I'm glad I don't have to juggle appointments and work at the moment...

You will know what to do work wise, once you get your schedule of appointments, and wether working through treatment will be realistic for you..Maybe, at least give your self some time off towards the end of treatment if you feel too tired?

I think like me, once the rads are underway you will feel a lot more optimistic. For me, it's like I can see the light at the end of the tunnel now something is actually happening..It's like moving forward to that next stage of recovery...
If you want to cry, let yourself, don't feel guilty...Indulge yourself a little, a nice big fat piece of chocolate cake, or a whole box of chocolates to yourself in front of a weepy movie, if you want to drink a bottle of wine and dance on the table, do it! (I have a couple of times in the last few months..It felt fabulous!! ) Whatever you fancy do it...Just don't fall off the table, or I will get the blame for leading you astray!!! LOL

Take care of yourself, and give yourself time to heal, emotionally as well as physically.
Sending you lots of cyber hugs, and hoping you can find your happy self again soon...She's in there somewhere!

(((((hugs))))))) to all you lovely ladies out there punching with those pink boxing gloves...We can win this fight!

Maz xxx
HFK1234
Member

Re: January Jems starting radiotherapy in NY

Hi  Mand and all!

 

Hope you don't mind me joining the party??  I remember you replying to a post I made before Christmas and inviting me to this forum, so here I am!

 

I'm just recovering from my lumpectomy, so am now thinking about the next stage, radiotherapy.  I see my consultant on Wednesday to make sure that there was no spread to the nodes, they couldn't see anything during the op, so hopefully there will be no need for further operations - the consultant said he'd be shocked if there was.

 

He wouldn't/couldn't give any info about the radiotherapy, he just kept saying not to worry and that it's nothing!  However as I work full time, I'm just trying to get my head around the logistics of it all.

 

What do you ladies do - work in the morning, then go for the therapy in the afternoon?  Does this work best?  Will I feel well enough to work?  My job isn't terribly physical, but I do need to be on the ball - will I have enough mental capacity to carry on?

 

Am I over worrying?

 

To be honest, I still feel quite out of it from the surgery, not so much pain but I just feel wiped out.

 

I've been feeling really depressed the last couple of days - do you think that is the morphine withdrawal? A lot of you describe how I'm feeling - grateful on the one hand that we're still here and this is as bad as it will get, but on the other - thinking what's the point?  I've felt a complete burden on my family the past couple of days.   I feel stronger by the day, but I still feel as if I've got some time to go - more mentally than physically.  The pain in my breast/arm pit seems to have eased off, but I feel wiped out.

 

I'm guessing this is normal.

 

A post from someone Britbox on page 3 of this forum has described exactly how I feel.  I am completely putting on a front for the sake of everyone around me.  I've been making jokes and have belly laughed about the whole process, whereas inside, I am petrified.  I know that laughing in itself is a really good therapy, but if I could, I would cry rather than laugh, but people just don't seem to be able to cope with it (could I if the tables were turned?).  

 

Friends and family keep saying how pleased they are that there is nothing else - yes it's great news, but I still have weeks left of radiotherapy and years of taking tamoxifen.  Also years of fear of it returning.  Then I think about children going through this sort of thing and how brave they are and feel ashamed of my self indulgent self pity.

 

I'm not sure whether I feel sorry for myself, or for my kids for putting them through this.

 

Thank you all for posting your experiences, it helps knowing what to expect and how to try and get around some of the side effects.

 

H x

Boxofrogs
Member

Re: January Jems starting radiotherapy in NY

Reading the replies about good experiences re rads has made me reflect a bit. I feel a bit mean to my rads dept as It seems that my post might have given the impression I wasn't receiving good treatment and this isn't the case. I just find them a bit distant and overly formal, and the process is a bit conveyor belt, but it has to be so due to the busy nature of the dept. In fact it is actually just one person who I find very difficult. She is quite patronising and the other day I caught her rolling her eyes when I was just passing the time of day.
Magical_Moon
Member

Re: January Jems starting radiotherapy in NY

My experience during my radiotherapy was the same as Kate's.
All my radiographers were FANTASTIC at Clatterbridge Cancer Centre.
Friendly, compassionate, caring and very helpful answering my questions.
It is three weeks since my last treatment and I still miss them. They were all young people who were courteous and very professional in their work.
It is sad to read that some ladies have had a much different experience especially as radiotherapy treatment challenges both your emotions and physical well being.
I count myself lucky I had such a wonderful team of radiographers.
On my last day, one of my regular radiographers even took time out of her break to come to say goodbye to me and wish me well which was very touching.
I was very emotional saying goodbye to my lovely radiographers because we had built up a great bond.
Peace and Positivity,
M x
Nally
Member

Re: January Jems starting radiotherapy in NY

I'm having my treatment at the Leicester Royal Infirmary and the staff have all been absolutely amazing.  Wonderfully compassionate, talk you through everything.  The facilities are quite new  and although there is a little area in the room that is screened off and they offered me a gown, I didn't bother as I thought it a waste of washing - I fully appreciate that we are all very very different though.  So, I just hop up on to the table and they ask me to put my arm back.  Then each time I go, they do say that they will need to adjust me but that I'm to lie still and they will do the work. 

 

They've all been very chatty and we've even had some giggles.  Mine have mostly been women.  I did have one male/female team and he was as lovely as the others.  I expect it's just luck to a certain extent, but I've been nothing but impressed with the team at Leicester.  On my first treatment, the girl on reception was the same as gave me my appointment schedule.  She even remembered that I'd had a couple of days hols booked between xmas and new year!  (I may just be unfortgettable of course.....)

 

I'm sorry some of you are having less than perfect treatment though Smiley Frustrated

 

Kate

Boxofrogs
Member

Re: January Jems starting radiotherapy in NY

Hi all, Beatrice, I have to slightly agree with some of what you say and wonder if it's something about radiographers. I have only had women, and they are all quite young. I find their people skills are a bit off. I am usually quite good at developing a bit of a rapport with people treating me, and let's face it, we get to practice these skills quite a lot in our situation. Not this lot.
Beatrice13
Member

Re: January Jems starting radiotherapy in NY

Hi all

 

I started rads this week on 8th Jan following WLE and 4x FEC and 4x Docetaxel which ended end November. Didn't enjoy the CT/planning session as radiologist who gave me an introductory 'talk' was quite flippant about possible long-term side effects like lung damage and ribs being more susceptible to fracture. These facts alarmed me as the very thing that will preoccupy us all at the end of rads is our continued good health. 

 

Had 2 sessions and Friday was cancelled due to equipment being broken. I was told that it wasn't detrimental to me to tag an extra session on at the end - in other words miss 3 days at weekend instead of 2.

 

I personally have to get my head around being pulled around like a 'piece of meat' and I'm sure that aspect will get better. For instance when I see my surgeon he says 'do you mind if I examine you?' The young male radiologist who looks around 15 (I know he can't possibly be) just unceremoniously rips open the poppers on my gown to expose the boobs which has the effect of making me feel I'm about to star in a porn movie - or is that wishful thinking? Haha

 

Best of luck to all January Gems - be strong and keep your sense of humour if you can.

 

Beatrice x

 

ps I've also tried using Simple baby wash for skin and hair as I don't like using bar soap. Not sure how good this will be after a few treatments when the skin may be more sensitive.

Dana1
Member

Re: January Jems starting radiotherapy in NY

Hi Hollykins. I had nausea for the first week and a half. I think it was mostly tension from travelling and thought of having treatment. You get used to going very soon and it falls into a pattern. Radiologists said some women do complain of nausea but no actual medical reason for it. I took some anti sickness tablets and it settled down after a while, I hope yours does too. Hugs xxx
Guest user
Not applicable

Re: January Jems starting radiotherapy in NY

P.S. I would love to join this thread too. Started RT on 2 Jan, have ticked off 7 out of 25 sessions! Has anyone else had s/e of slight nausea? Xo
Guest user
Not applicable

Re: January Jems starting radiotherapy in NY

Bally, I get a tube of cream a week. Plus make sure shower water is cool. Xo
Guest user
Not applicable

Re: January Jems starting radiotherapy in NY

Nally, if you have Merina or other hormonal coil it may have to be removed. Might depend on whether your bc was estroegen receptive or not. Old fashioned copper coil might be ok. I got one in but it got "lost" so I have to be admitted to get it removed now.
Mand
Member

Re: January Jems starting radiotherapy in NY

Nally - that so made me laugh. I have to say it - you're a right tit!!! Lol.

Kipper - agree, I've only had two days but glad I've got two days break before I start the next 5 days.

SE for me - my boob has remained hot since surgery because of seroma so it is hot hot now! Today when I got home I noticed that it is already red unless it was the light. I'll need to check tomorrow to compare again but I didn't think you had signs this early?

Hope everyone has a restful weekend and look after yourselves.

Just remembered, I didn't give everyone an update after my first day yesterday. I was a little down as I had had my coil out and not been sleeping too well. I arrived very early in the hope that I could sit down and relax with a coffee before going down to be zapped. They called me straight away ahead of my appointment time so I had no time to think. As I went in to the room I saw an image of my boob on the monitor. A kind of 3D image which seemed to look in to where my lump used to be. For me, it brought back the vivid memory of seeing the white mass where my lump was on the monitor when I was having my mammogram. I knew at that point that I did have cancer so it was all a bit overwhelming for me. However, I managed to control my emotions and thought I'd have a good cry when I got out of there. It became all too much when they were sizing me up on the machine. We had to stop a couple of times for me to dry my eyes, otherwise my ears would have filled up with tears by time they were finished.

I have to say that today was so much better and I knew it would be once I got through the first session. There really is nothing to worry about but it doesn't stop your mind working overtime!

I also got to book some complimentary therapy treatments today which I'll have through my treatment. Also, some counselling sessions which I think will help me talk through how I am feeling.

Take care everyone. Mand xxx
Kipper107
Member

Re: January Jems starting radiotherapy in NY

5 days down, 18 to go! Boob is hot and a bit sore but nothing to horrible. Looking forward to 2 days off. Side effect wise I am ok, not sleeping much but no change there, managing to work etc so all in all not too bad.

Accidentally met my breast care nurse today (long story but she has been useless) who asked if I was there for chemo! Nice to know I am so memorable., especially as I have had NO hair the last few times I have seen her.
Nally
Member

Re: January Jems starting radiotherapy in NY

**STOP PRESS**

 

A colleague just asked how it was all going.  I said sort of ok, then I felt both to check.  Right one is decidedly warm compared to the left one. 

 

So first I had a turquoise tit.  Then it faded to a blue tit.  Now I have a hot tit. Smiley LOL

Nally
Member

Re: January Jems starting radiotherapy in NY

Mands, bcn said prob have to have my coil out, but oncology dept said not .....
Mand
Member

Re: January Jems starting radiotherapy in NY

PS - I feel hard done by? Only having two tatoos lol. I wonder why that is. Perhaps those that have 3 had all LN removed? Those with 3 possibly have a bigger area to be zapped? Good luck with whatever day number treatment you are at tomorrow. Mands xxx
Mand
Member

Re: January Jems starting radiotherapy in NY

Hi to all the new Gems that have joined us and thank you for sharing. Still awaiting my first session on Thursday but tomorrow I pick up my tamoxifen and start taking. Was delayed unfortunately or perhaps more fortunate! I also have to have my contraceptive coil removed tomorrow due to my cancer being hormone receptive. More not looking forward to that one as in the past it has been excruciating to fit and remove, mainly due to me being very petite and not having had two natural child births! I haven't heard of anyone else having to have a contraceptive coil removed - anyone here? Mands xxx
fimbo123
Member

Re: January Jems starting radiotherapy in NY

Hi everyone, just spotted you. I started rads on 2 January and I think I'm on the same schedule as you, Boxofrogs, as I'm having 25 in total (to chest wall, axilla and neck). Do you finish on 5 Feb? By the time it's over I too will have had 'the works': neoadjuvant chemo (3 AC, 4 Tax), mx and ANC, tamoxifen and now rads. So far rads has been ok. Very undignified of course, but I try to put all that out of my head. The treatments seem to be getting quicker as the staff and I get used to getting me lined up more quickly.

I'm extremely fair skinned (used to be a redhead when I still had hair!) so I'm a bit worried my skin will fry, but I guess I'll just have to wait and see. The rules at my hospital are no deodorant, simple soap only, aqueous cream twice daily, showers not baths, no shaving, no swimming, pat dry don't rub.

Looking forward to comparing notes xx
Kipper107
Member

Re: January Jems starting radiotherapy in NY

Second session much quicker, in and out in around 20 mins.  Feel a bit better about it today thank goodness.  I am planning on trying to do a 60 min gym session following my treatment (unless I get too sore) and hopefully that will keep me feeling positive!  Feel quite sore but think its probably my imagination at this stage!

Annie62
Member

Re: January Jems starting radiotherapy in NY

Posted twice, so I've deleted this one!

Annie62
Member

Re: January Jems starting radiotherapy in NY

I'm at the same stage as you Dana, finished on 20th December, and it's really only this week that the soreness and peeling are under control.  I do agree about the arm exercises being important, as the shoulder does tend to stiffen up and of course the treated skin is no longer as elastic.

 

Had to laugh at the idea of a 15g tube of cream being enough for all treatments....I got through nearly two 350g tubs!  Smiley Very Happy  The rads nurses advised me to apply it several times a day.

 

I'd also add that exposing the area to air for a short period a couple of times a day is helpful and seems to aid the healing process.

 

Good luck to everyone!