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.
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.
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?
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.
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
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
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
Thanks for that Fimbo. I think it just knocked me this afternoon. Shouldn't have let the misery knickers radiographer get to me
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.
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!
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.
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.
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.
Take care ladies and have a good rest of the week with the rads.
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.
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
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.
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.
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.
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!
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! 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!