December Angels 2013

[RacingJules]

Wyn - great news and must be fantastic to have finished rads. Thanks for the moisturising tips - I am due to start in a fortnight so will bear that in mind. I hope life is starting to return to a new "normal" for you now. 

Jules xx

[setareh]

started on Tuesday. have another 16

[SJB]

Setareh, how come you only had 4 sessions?

[setareh]

Petal I experienced the same problem a few weeks after my operation, I talked to my doctor and had ultrasound. We thought it was a lump but It wasn't and it disappeared later. We always must check with doctor.

I had 4 sessions of radiotherapy. My skin became a bit pink the first day. I don't know if it's normal or not but have review this Tuesday. I met two ladies, they had 20 sessions and they were ok.

[Joanne1973]

Hi petal, ive noticed 1 or 2 lumps around my surgery site. My docs said radiotherapy can harden some of the tissue but its always best to get it checked out. Really hope its nothing but do mention it to someone. Guess we have to get used to living with our new bodies.
X

[Petal88]

Thanks for the tip Wyn. I have only had 5 out of 15 rads yet and am a bit pink and I'm creaming well at least twice a day.

How nice that you are through it all. All the very best for the future!

I was rather worried to find a hard pea-size lump about 1cm away from my big scar on the side of my breast. Anyone else had anything like it? I know it may be scar tissue but I will phone the breast care nurse on Monday. I am also due a mid cycle review on Wednesday so I can always ask them to examine me.

[wyn]

Hi ladies,

Glad to see everyone is doing well and moving on.

I finished my rads yesterday (15 + 4 boosters) Yayyyy. so glad.

 My skin under arm and under breast became very tender last couple of days and sore despite moisturising twice a day with aqueous cream.  although it has not broke down yet the nurse gave me a hydrating gel to put on those areas so hope it doesn't get any worse, apparently these are the most common areas to break down so please be careful and put extra moisturiser on these areas.

Sending hugs

Wyn x

[RacingJules]

Hello Ladies

I hope you are all doing well - you are such an inspiration!

I had my radiotherapy planning yesterday - all seemed to go fine. I start my 15 treatments on the 21st July, so not too far away. Like Petal, I will have Herceptin until next year (every three weeks). 

I met the husband this morning of a lady who has just had her first chemo for BC after a recent diagnosis -  a reminder of how far we have all come when I think back to when I was in her position. 

Onwards and upwards everyone - the home straight now. 

Jules xx

[setareh]

Well done SJB, hope everything goes well with the rest of your treatment. I get my prescription from my GP. Good thought, I'm going to make an appoitment to discuss this. Thanks

[Petal88]

I quite agree the hormone tablets are the likely culprit and maybe you will adjust to them. I was quite emotional for the first couple of weeks on my Letrozole but seem to be ok again though it is always worth mentioning it to the doctors or your breast care nurse.

The nurses have told me that Herceptin doesn't usually give any side effects in injection form.

[SJB]

I don't know about Herceptin but Tamoxifen is a hormone treatment, so it has all the possible side effects of HRT - which includes depression. Who gives you the prescription? Oncologist or GP? Whichever it is, contact them and tell them it has made you depressed. They should be able to either offer a different hormone pill or something to counteract the depression. Don't live with it.

I've just done my 5th radiotherapy session - 10 more to go. Nearly there now!

[setareh]

Me too Petal, I have to go to hospital every three weeks for herceptin. Started tamoxifen last month. I think one of these treatments caused me depression.

[Petal88]

Setareh, don't be down, we're on the home stretch! I know it is a pain having all the journey time etc. just for a few minutes of treatment but just think of all that we have achieved so far - if we can get through chemo, we can get through rads. One day at a time, just like with chemo side effects, and before we know it, it will be all over. Keep posting on here for support, we're all getting there together.
I went for my Herceptin jab again today and they will be every three weeks till next year. I have to go to the chemo ward and it is such a good reminder that chemo seemed never ending at the time but it's already becoming like a distant bad dream.

SJB and Kaz, I'm still hanging on to my nails but the discolouration is worse. I don't know if that is a sign they will go or if it will just grow out.

[setareh]

Just had my first radio session. I feel very depress, don't know how to go to that hospital for one month

[SJB]

Jules, those machines always seem to be breaking down! Hope it gets done on Wednesday!

Kaz, glad I'm not the only one!

[Kaz16]

Hi SJB
Snap I have just lost my fifth finger nail , four from one hand and one from the other. Feels and looks a bit weird at first but just another thing to get used to !
Love to all

[RacingJules]

Thanks everyone for the helpful comments. 

I had my 7th Herceptin this morning so getting there 🙂

The planning session didn't happen unfortunately as the machine had broken. I am due back on Wednesday this week to have that done, so fingers crossed. 

xx

[Petal88]

Thanks for the advice, Kaz. I can contact my BCN or I have a lovely community cancer nurse who has been my main support but it is good to know to watch out for after effects. I had wide excision after chemo so may react differently but I will make sure I cream well for some time. Well done you for getting through it all, I hope you continue to return to the normal world. I'm looking forward to it!
In case anyone else has a problem with aqueous cream, the radiologist suggested E 45 and I am fine with that.

[SJB]

Well, I won't have either of those problems, as i have no boob or nipple lol

I would always call my BCN with any problems as she is my point of contact at the hospital and will know who to contact to sort out anything.

I lost my 5th fingernail yesterday, by the way. Anyone else losing them?

[Kaz16]

Hello everybody
I am now 4 weeks post radiotherapy (I had lumpectomy before chemo) . I had no problems at all whilst having radiotherapy and had a review appointment mid way through, at which point I also had no problems. It was 2 weeks after treatment that the skin under my boob blistered badly and now that has heeled it is very itchy and nipple sore. Make sure you know who to contact and what to use after your treatment has finished as that's when my problems started and I hadn't had much advice.
Having said that it is wonderful to have finished treatment, feeling stronger every day and back to work at school . I am very slowly beginning to feel like me again.

[SJB]

My radio planning session was 3 weeks before I started radiotherapy. Anyway, I reckon you now know it'll be starting within the next 1-3 weeks, by the sound of it, Jules. Good luck.

I've had 3 sessions now, and no side effects so far. Let's see how I feel next weekend, which will be half-way.

[Petal88]

It seems to be usually a week to ten days between planning and rads. I had my first session on Thursday and also found it is the hassle of the travel there, the parking and the waiting around that are a complete pain for a very quick procedure. I am now totally frustrated because one of the two machines at my hospital has broken so I had yesterday's session cancelled. This means I have had one, missed one, followed by weekend off, I'll have one on Monday and then on Tuesday the other machine is to be serviced so that's cancelled too. I've been told you can miss three sessions without it affecting your prognosis but I will have missed two within the first week!

[setareh]

I start radiotherapy this Tue. Had the planning about two weeks ago.

[RacingJules]

I have my radiotherapy planning session on Monday, after my Herceptin infusion..................

Can anyone tell me how quickly after planning I will actually start the radio? I am due to have 15 blasts over 3 weeks................

Many thanks

Jules xx

[SJB]

I was hoping that was the case - thanks.

[Joanne1973]

You should be fine driving. The tiredness didn't really kick in until after 🙂

[SJB]

I've asked my mum to call into the local M&S and ask for me. I don't get near it often, so will have to make a special trip.

Had my first  radiotherapy session today. The radiotherapy itself was a doddle, but the 45 minute drive there and 70 minute drive home were a nightmare! Am I likely to be able to drive myself there every day or will I need to resort to lifts from friends like I did with the chemo?

[kim-53]

sorry i think that m&s do stock mastectomy bras now, 8 years ago they didnt and that is why i ordered through the nicola jane catalogue, i will have to go and have a look myself its time i bought a new one! my fam treated me to a mastectomy swimming costume from the catalogue but they are very expensive, my mother in law sewed some pockets into my ordinary swimsuits so i have more than one to wear now! funny story while on holiday once in spain i was wearing my costume with a waterproof prosethesis and decided after a long day swimming to wash my hair at the side of the pool, i used body wash and when i looked down the prosesthesis was bubbling up foam which i found hilarious!! i dont think nobody noticed tho haha

[kim-53]

hi sjb the m&s lady came to my breast care centre on an open day so i was lucky enough to have it done then, but im sure you can get measured there without having to buy one, i dont think they sell mastectomy bras tho at m&s,

[SJB]

Oh, you have to get a referral from your GP for your prosthesis, Jules? My Breast Care Nurse is going to sort mine out with me at the hospital. She asked if I wanted to sort it out before or after the rads, and i said let's leave it till afterwards as i won't be able to wear it while I'm having the rads anyway. So as soon as I've finished and feel able to wear a bra again, she said just to call her and she'll make me an appointment to go in and see her to get one.

Thanks for the advice about waiting till I have ther prosthesis before getting a mastectomy bra, Kim. Don't they mind in M&S that they are taking time to measure you for a bra that you are going to buy somewhere else? I thought you would have to buy one from the shop where you were measured?

[RacingJules]

SJB - love the profile pic - it's great to see you doing so well!  

Petal - I hope you do well with rads - thinking of you. 

Wyn - many thanks, that's helpful. 

I still haven't got all the movement back in my arm but I am getting there. Looking forward to seeing the consultant to get moving with rads tomorrow. I am also seeing my GP tonight to get a referral going for a prosthesis. 

Sounds like everyone is doing well - onwards and upwards! xx

[kim-53]

hi sjb i was given my prosethesis before i got my bra, i then got myself measured properly by a lady from marks and spencers then with my true measurements i ordered my mastectomy bra from the catalogue nicola jane, the bra i got is great as you can pop the prosthesis inside the pocket of the bra and never worry about it falling out! i have ordered about 3 now from this catalogue and i am very happy with the quality of them, good luck with your rads it will go quickly, i love yr profile pic you look very good with yr short hair

[wyn]

Hi angels,

It's good that everyone is either finished treatment or in final stages and soon we can put this all behind us.

Petal - I also had swollen ankles like Joanne four weeks or so after chemo but they settled down until last week when weather was hot. I use aqueous cream twice a day and although I have no reaction my breast has become red and tender now as I am halfway through rads just hope it doesnt get any worse.

SJB - sorry to hear you have lost your nails despite looking after them, I had been advised by chemo nurses not to varnish as this could mask infections etc so I only used moisturiser and my nails have been fine with the exception of discolouration, good luck with rads tomorrow.

Jules- My arms are also bent at 90 degrees above head when getting rads.

Sending best wishes to everyone

Wyn x

[Petal88]

Thanks for reassuring me, Joanne. I made a phone call yesterday and it seems some people do react to aqueous cream so I have been told to stop using it and talk to the radiologist on Thursday.

For the swelling, I do put my feet up when I can while sitting. It I am more worried about my hand as it is only on the operated side. I am going to be referred to a lymphoedema nurse to be on the safe side but, again, I am hoping it will settle once the hot spell ends.

It sounds good, "the final stage". It's hard to imagine that this time last year there was no inkling anything was wrong and what a year it has been! I'll still have my Herceptin jabs every three weeks back on the chemo ward for some time yet but I feel lucky when I go there and see everyone having their treatment and knowing the worst is over for me now.

[SJB]

I'm all ready to start rads tomorrow. I think I have full movement back in my arm now. Amazing how it all comes back in time.

I've lost 4 finger nails now, even though I've kept them painted. 

My hair is now an inch long or thereabouts. It had formed a natural mohican down the centre, but that is finally starting to lie down flat, thank goodness. Totally grey, not a sign of any colour in it. My eyebrows have grown back nicely, also grey. Body hair is all growing again now.

Quick question for those of you who had surgery before chemo - when it's time to get fitted for my silicon prosthesis, should I buy a mastectomy bra FIRST or AFTERWARDS? i.e. Do I get myself fitted for the bra with one boob, or wait till I have the prosthesis and get fitted with two boobs?

[Joanne1973]

Hi petal. Hope your feeling ok. If its the aqueous cream you've had a reaction to they can give you something a little different. But really all you need is something with no perfumes etc as they will irritate. I had swollen feet and ankles which came up about 4-5 weeks post chemo, they were massive and uncomfortable but they did settle after a week or two. Put them up when you can.
You're very very nearly there . 🙂 good luck starting your final stage x

[Petal88]

Oh my goodness! I started using aqueous cream twice a day in readiness for rads on Thursday ( as instructed ) and now I have a rash on my boob!! Need to check it out with someone.
Also, worried as I have some oedema. I am hoping it is from the Letrozole and hot weather, not lymphoedema but will have to check that out, too. My ankles swell each day and sometimes my right hand (operated side) feels like it will burst. Just want rads out of the way and forget this nightmare of feeling like I live in hospital.

[RacingJules]

Many thanks ladies; that's really helpful. 

I am having 2 physio sessions this week on my arm to try and get more movement. I am seeing the specialist next week so presume I will have planning soon afterwards!

Onwards and upwards for us all!

Jules xx

[Ro21]

Sounds like once again things are done differently in different parts of the country! My arm was at a 90 degree angle to my body supported on a rest when they zapped my chest & armpit. The worst was the planning meeting coz it took so long (90 mins).......the actual radiotherapy was very straightforward & I hardly had to wait.

Glad to learn people are gaining in confidence and going about "wigless". I only wear mine for work & when I come back from holiday in a couple of weeks I'm going to ditch it completely.

Hope you ladies still in pain find relief soon, I've been so fortunate with my side effects I count my blessings. I'm discharged now & stepping back to normality. I seem to have come such a long way since my mastectomy in Oct with chemo & radiotherapy afterwards but people expect you to be the same person as before....... But you're not.

Hugs and best wishes to you all x

[Petal88]

I'm just back from rads planning and I start next Thursday!
I am still having a lot of nerve pain in my shoulder and down my arm but the physio,and doing the exercises three times a day, is definitely helping. The ladies in the radiotherapy department were really nice and most concerned not to hurt me. They would have adjusted things to make sure I was ok but I actually could manage the position for the scan perfectly well. I have been doing an exercise where you lie on your back with a small pillow for your head and you clasp hands and lift them up. At first I could only get them upright with nerve pain in my arm but gradually I have been able to go right back behind my head, flat to the bed. You count up to 10 and do this five times.
This is the position needed for rads (I wasn't told to have a straight elbow and I had my hands together so they were bent at a natural angle). This pulled a bit but once I totally relaxed my arm it stopped hurting and I could lie comfortably for the scan which takes a few minutes.
I, too, now have my tattoos!!
Don't worry Jules, the radiologists will help you and make sure you can manage it.

[SJB]

I thought I had good movement in my arm until I went for the planning appointment. I found it painful even though I was doing the exercises I was given with ease. So I am now doing my own exercises. You'll need to be able to put your arm straight up above your head, elbow straight, palm forward, then stretch backwards. Do this as an exercise regularly - it will stretch your muscles a lot more than the standard exercises.

Your arm will be bent but it is angled down and backwards behind your head as you lie down. The other arm does it with ease, but the stiff arm...well, that's what you need to work on! I'm hoping I'm there now as it is one week today that I start!

[RacingJules]

Can anyone help with how far you have to get your arm back for rads planning? Think I have a way to go but am on weekly physio which should help..................

[setareh]

Had my radiotherapy planning today. It was so easy and everyone was nice. I never wanted tatoo but now I have 3

[RacingJules]

SJB - well done on starting rads soon. I hope all goes well. 

I am seeing the oncologist to get moving on rads on the 25th, but mine won't start until early July due to the problems I have had with the seroma. It's finally slowing down so fingers crossed. However, the scar line is quite red (not painful) - does anyone else have this? My physio doesn't seem bothered by it so hopefully it's just a healing thing. 

I am back to running - I used to run regularly and train for marathons before BC but obviously haven't been able to do so, However, I have been out this morning for a half hour run and it felt great!  A bit of an odd right arm action as I can't swing it properly but who cares!!!

Have a lovely day everyone!

Jules xx

[SJB]

I start radiotherapy on Wednesday 25th June. Last session is Tuesday 15th July. Can't wait to get the other side of it!

Yesterday I kept getting a shooting pain under my arm every time i moved it, but again, I'm assuming it's a nerve settling back down again after being numb or whatever. Very frustrating.

Did I mention that I've met a local lady from this forum a couple of times now. I live in Biddenden, Kent, so I posted in the local areas section for meet ups. She lives in Folkestone, so we've met twice in Ashford now. And this week I'm going to meet a couple of other ladies, one from Tenterden and one from Tunbridge Wells. We're all getting together at a central meeting place - a coffee shop at a local castle. It's lovely to meet others that have been going through the same experience. I just wish someone from this group lived closer to me.

[Petal88]

SJB It must feel horrible to lose a nail but hopefully it will grow back quite quickly. Mine don't look nice and I still keep them very short as they are crumbly at the top. The discolouration doesn't show much at all as I use a nail protector coat which looks a bit white and then top it with clear nail varnish.
I was told it can take months for the lasting side effects of chemo to wear off. My toes are still a bit numb in places and tingly in others.
When do you start rads? I have planning on Wednesday and I am still a bit worried about nerve pain in my arm. Is yours any better yet? Because the nerve had been trapped by the breast drain the physio said it could hurt for months, not just under my arm but all the way down my arm and in my hand. It's restrictive but it is amazing what you get used to and cope with. Good luck to us all on this leg of the journey. Petal x

[SJB]

Oh Joanne, I'm so glad you found the confidence to start going out without any headwear. It's too hot now!

I lost a fingernail today. It had been coming loose the last few days and I stuck a plaster over it this morning because it was so loose and sore. I noticed at tea time that it was off my finger and stuck to the plaster so I unpeeled the plaster and it was gone.

There are 3 more that will go the same way within the next 2 weeks. Not sure what will happen with the others. None of them look nice when I take the varnish off.

It is weird. I was fine about losing my hair, fine about losing a boob, but so squeamish about losing nails. go figure! 

[Joanne1973]

Couldn't agree more wyn, well said! X

[wyn]

Woohoo angels, brave pills are working lol, we can do this,

who cares if people stare after what we have all come through we can hold our heads high and be proud we have got this far.

Take care

Wyn x

[Joanne1973]

Thanks to you ladies I too have taken the brave pill and am starting to face the world with no headscarf. Don't think anyone even looked, it felt great actually! Well done angels for taking the next big step xx