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October 2016 starters

swampy1901
Member

Re: October 2016 starters

Have you asked if you can have another wig?

 

The reason I ask is that one of the ladies in our monthly group went for another one after her original wig went matted and a bit tatty in the way you are describing. When you think about it they do get a lot of wear and tear no matter well you look after them and to be fair you would replace an item of clothing without thinking about it.

 

Swampy

Aine
Member

Re: October 2016 starters

Hi ladies

Holidays Holidays Holidays!!!!!!!

 

Lovely to hear you mention treating yourselves to trips to fantastic places and boy do you deserve it.

 

Sorry that some of you are having problems with swellings etc.

Auntie Julie congratulations that rad is over for you!

Suebond omg Australia would be fantastic.  I found out recently that I could get a NZ passport as my Granda was born there - if I had known that when I was younger I would have gone and worked in Aussie...would have had a different life I am sure.

 

Im trying to be as active as possible - it is most definitely speeding up the recovery process for me.

 

So sick of having no hair...my wig is getting a bit worn looking and the mesh at the hairline is curling up...I have to try to cover it up...am still hiding from people so they dont realise Im wearing a wig.

 

Think positive thoughts only!!!!  I am trying to.

Aine x

Auntyjulie
Member

Re: October 2016 starters

I hope you have a great holiday, I know what you mean about having something like that to look forward to. I'm hoping to book a Sun Holiday as soon as I start to feel better xx hugs to all
Auntyjulie
Member

Re: October 2016 starters

Thanks Sue, I called the bc nurse and have an appointment Wed morning to get another aspiration! It's very sore. I did have good news last week, Surgery was successful and as the chemo had worked so well they have decided radiotherapy is no longer needed!
suebond88
Member

Re: October 2016 starters

Aunty Julie,  so glad to hear that you took yourself to the chemo ward and they aspirated your Seroma - can be very painful and uncomfortable I know.  You beat me...they aspirated a small glass of wine from me - you got a large one 🍷🙄

starting rads on Wednesday so a little apprehensive, but reckon it should be a doddle after chemo.

we are also planning a trip....our aborted visit to our daughter and family in Oz, but not until November, am getting excited already though - something to aim for 😍😍

hugs to everyone 

sueBxxx

 

Auntyjulie
Member

Re: October 2016 starters

They aspirated 250ml and sent me home. I do have an infection but they gave my nothing for that. Gotta call bc nurse tomorrow however swelling is still there
Auntyjulie
Member

Re: October 2016 starters

Thanks hun, I decided to pop into the chemo ward, waiting for bloods and a dr now
Snail888
Member

Re: October 2016 starters

Aww sounds very sore. Are you taking ibuprofen? Strapping from a tight compression bra should help x
Auntyjulie
Member

Re: October 2016 starters

Hi no rads, post surgery 12 days and swelling bigger than a tennis ball
Snail888
Member

Re: October 2016 starters

Aunty Julie are you having rads at the.moment? My seroma seems to swell a lot on rads days and like you I am icing it since I can't take much at the moment in the way of tablets. I am hoping the boosters next week don't make it swell much more as it is already egg sized and right under my arm pit x
Auntyjulie
Member

Re: October 2016 starters

Bc nurse not back nurse lol
Auntyjulie
Member

Re: October 2016 starters

Hi girls, thanks for the support. I think I have a large seroma, under my arm pit moving to the front and back after my Mastectomy. Very sore and uncomfortable with a little redness, no tracking! I'm using ice packs and sleeping elevated it's restricting my movements. It's Saturday now gonna call the back nurse Monday but so far everyone who has looked at it (though it's got bigger since then) seams reluctant to do anything and want to leave it alone. I'm finding this more debilitating than the chemo and hoping it's temporary but the way it is atm I can't plan anything (like a holiday) and taking afternoon naps with morphine just for the relief. Any advice?
Truey
Member

Re: October 2016 starters

Hello Everyone,

 

Well, as Aine says, who would have thought we would all be talking about holidays rather than constipation - isn't it great?! I even had some pre-holiday vaccinations last week. After so many SEs from chemo, the sore arm was hardly noticeable. We are doing our "trip of a lifetime" in July for our 40th anniversary which has been something to look forward to, especially as we were originally due to go in April and had to cancel n case my treatment dragged on....Hopefully  by then my stamina will be better. At the moment I have a rush of enthusiasm each morning and burn out by mid-afternoon.

 

I have completed radiotherapy and am 3 weeks into anastrazole with so far few effects except the joint stiffness. Have even been back to the gym trying to brazen it out in the shared changing room - the typical Brit on the beach getting dressed under a towel!

 

I sympathise about the hair situation. Mine is coming back white as it was before........but it is showing signs of being curly!! Having had straight hair all my life I'm looking at it and wondering how I will eventually style it. I have been without my wig for a few weeks now. I guess I would wear it for a wedding or something formal but in normal life the wig is just irritating because it keeps slipping off my thick thatch of inch long hair! Most people don't notice and seem to think it's a fashion statement. Someone even asked me why I had cut my hair and then nearly fainted when I said I had just taken my wig off!

 

Mascara - OMG how right you are - the joy of putting that on. I hated having no lashes but fortunately they have grown back very quickly. Nails are another matter. None have dropped off but those on my hands still look hideous, I'm praying they grow out as fast as possible. Neuropathy is still there in both feet and I just hope it will eventually resolve. Buying shoes is a challenge when they ask "how does that feel on your toes" and the answer us "I have no idea".

 

Like most of you, I'm struggling to come to terms with everything now that active treatment has finished. Am trying to book a Moving Forward course but there are very few within striking distance of me. Has anyone done the course and did you find it useful?

 

Wishingyou all luck with the next steps and few side effects from hormone therapy.

 

Sue O x

Aine
Member

Re: October 2016 starters

Hey girls.....do you realise we are now talking about holidays!!!!!

Not just doom and gloom but having fun and a life again!!!!

Isn't that a good sign????

Yeaaaahhhhh!

 

Olddawn....hope Cornwall is great...mind the low branches and dont get the wig caught again!!!

I was a barmaid in the Sailors Arms in Newquay when I was a student and still recall how cool it was!  Those Australian surfers!

 

Sue ..I have a few curly eyelashes too its a bit odd but better than none which I hated - I really looked awful and now its a great pleasure to put on mascara every day.

 

Maryminder ...Im just back from a weekend with my sister in Donegal (most beautiful place in Ireland) and pushed myself to exercise all the time which was hard but omg worth it.  Im aching today and doing a lot of staring into space with my mouth open!  Even so I was gardening....doing a bit and taking short breaks and doing more even though I just want to sleep.  It really is the way to get stronger ladiesWoman Very Happy

 

Herceptin....done 9/18 like Dawn.....yes the SEs are diminishing (still trots, runny nose, numb toes, mild hand problems)

 

Im still going to yoga in the MacMillan Centre at the hospital...love it and the chat after with likeminded people is such a mental boost.

 

Hair.....omg.  I dyed my convict hair blonde for the second time and it hasnt done it any harm.  Its much better than the shock of grey/white.  Its peeping out round the wig and I can see its going to be a bit difficult to deal with.

 

Went to an Edith Piaf tribute concert (brilliant!).

The woman sitting behind me said to me in the toilets "I LOVE your hair!"  I nearly hit her!  How could a complete stranger think it appropriate to say that to me?

Its like asking someone when their baby is due!  I had had a few glasses of wine so told her it was a wig.  You should have seen her face.  I wish I hadnt now of course cos she clearly told all her party and they made a point of talking to me and hugging me after the encore.

I hate any kind of pity so thats taught me a lesson ....say nothing.

 

I hope you are all loving this gorgeous weather and getting outside as much as possible.  I know its exhausting but go for lots of fresh air and exercise and you will get stronger mentally and physically.

 

Be good to yourselves.  I am.

 

Hugs to all you ladies and be proud of where we have got to and how we have fought to get here.

Aine x 

 

 

 

 

maryminder
Member

Re: October 2016 starters

Hi Sue,

Well done for getting back into your favourite pastimes and so glad you had a well deserved break,although the thought of caving has me running for the hills Smiley LOL

The first meeting today was really good, lots of information re exercise,diet and generally taking care of ourselves, but to say something and have other ladies say "that happens to me as well" makes you realise that you are not alone in how you feel.

I managed to talk to a BC nurse today about my shoulder and she has suggested I refer myself for physio at my local hospital as it is still quite sore and uncomfortable, she also said my surgeon will be at next weeks meeting talking about the after effects of surgery and I should be able to have a chat with him and he may suggest seeing me in clinic just to check things out. 

Take care

Mary x

 

Sus12
Member

Re: October 2016 starters

Well done Mary! It's so good to ditch the headgear isn't it? It's a big step and it's going to be different for each one of us when we feel able to but so liberating when you do. And as you said I found that you get the odd glance but people are very supportive or are so busy doing what they're doing they don't really notice! Sounds like you had a great trip with your sister and got some much needed get away time :). I've been back doing a bit of caving and was pot holing and doing a bit of abseiling on Saturday ( yes I know that's an odd pastime lol) and although I was exhausted at the end of the day the rest of the group were so supportive and I felt so happy getting back to doing things I enjoy and getting outdoors. It was nice to get away for a couple of days too as we stayed overnight at a nice pub and had a lovely evening meal so it felt like a mini holiday. Now down at my mums for a couple of days supporting her as I haven't been able to see her as much as I usually do as she's a 6 hours drive away. We went out to a local house and gardens yesterday and even got to sit outside in the gorgeous gardens having coffee and cake in the sun!
How is your shoulder now? Hope it's easing for you and not so painful.
Enjoy your moving forward course tomorrow. Let us know how it goes. It's too far for me to get to one sadly....nearest is a 4 hour round trip!
Hugs to all, hope everyone had a good Bank hol.
Sue F xx
maryminder
Member

Re: October 2016 starters

Hi All

 

Had a lovely but exhuasting weekend away with my sister and surprised myself by not wearing a hat at all, everyone on the trip was supportive and so complimentry about my hair growth it didn't seem neccesary to cover up, and although on the street there was a few second glances it was great, if a little cold at times, so have decided to be brave and ditch the headgera altogtherSmiley LOL

 

Today I begin my Moving Forward Course so will let you know how it goes 

Hope everyone had a good Bank Holiday

Hugs Mary xx

OldDawn63
Member

Re: October 2016 starters

Nice to see you are all 'moving forward.' The Moving Forward course I have booked myself into isn't until June, but I should have moved forward a bit more by then.

 

Sus12 - I'm impressed too - you are braver than me! I am now going 'bareheaded' at home, even with visitors, but I'm still wearing the wig to go out. I don't think my hair is quite long enough for the hairdresser to be able to do much with it (OH says I look like a convict). My eyebrows and eyelashes are OK, although the hairs on my legs are definitely crinkly (note to self - get some depilatory cream tomorrow). My fingernails are also much improved apart from dry flaky bits at the tips, but I think the last of the T ridges should be gone within the next 6 weeks!

 

Suebond88 - sorry to hear you are getting pains from the Letrozole. I hope it settles soon. It may take a few weeks for your body to get used to it. The May 2017 Radiotherapy thread is now up and running on the Radiotherapy board if you want to join in when you start. I finished radiotherapy just before Easter. The travelling to and fro is a pain, as is waiting around when appointments are running behind. Otherwise, the main things to note are: use only perfume free skin products, moisturise often (take some moisturiser with you to put on after treatment), keep well hydrated (drink at least 2 litres a day and take a bottle of water with you), wear loose, comfortable cotton tops that won't rub the treated area (ditch the bra when you can, otherwise wear soft, cotton bras or crop tops over cotton vests), and let them know as soon as you notice any change that concerns you.

 

Aine - glad your fatigue workshop is helping and your SEs are diminishing. They do eventually, although it takes time. It is not easy to be patient when it has taken us so long to get this far, and we just want to get back to 'normal' (whatever that is).

 

I have been taking Letrozole for 3 weeks now, and haven't had any serious effects from it, just the occasional hot flush and creaking joints with occasional mild pain - my joints sound a lot worse than they feel! I think Aine is right though, that forcing yourself to exercise helps. I probably would be worse if I hadn't.

 

I went to see the oncologist for my 3 monthly review on Monday and everything seems OK. Echocardiogram and blood test normal. Also had Herceptin 9/18 Monday afternoon so halfway there already! The effects from Herceptin have settled, and are not significant. They consist of red flushed face and the trots for a day or two after the injection, and a runny nose. I wouldn't have known that these were the effects of Herceptin if I hadn't delayed the Letrozole.

 

I asked the oncologist about a bone density scan, and he said I didn't need it, as someone my age (53) shouldn't have any problems at this stage. I am also taking the Adcal tablets as a preventative. Unless there are any signs of osteoporosis in the meantime, it looks as though I won't have a scan until the 5 year milestone.

 

Anyway, to celebrate the end of my active treatment we decided to book another holiday, so we are off to Cornwall for a week next Thursday. Before we go, I've got another OH appointment on Tuesday, and I am hoping they will agree this time that I am fit to return to work as soon as we get back.

 

We thought it was safe to book a holiday because I didn't seem to have any problems from the radiotherapy. When I finished, the site of the boosters was a bit red but not sore. Unfortunately this red patch has now developed into an itchy rash. This is despite continuing to moisturise with aqueous cream several times a day as advised. I rang the hospital about it this morning, and was told people often get a reaction a couple of weeks after radiotherapy, but it should go away on its own after about a week. Meanwhile, they suggest I use the Flamazine cream, sparingly, as this will help reduce the itching and stop infections if the skin breaks. I have started to do this, and hope it will be under control by the time we go away!

 

Onwards and upwards I suppose - there's every chance things will be better forvall of us by the summer. Hope you all continue to improve, and if you still have radiotherapy to come, I hope it goes well.

 

 

Sus12
Member

Re: October 2016 starters

I didn't think I would ever be the 'ditch' kind either Aine :D. There are times when I won't bare all but don't want to bother with the wig and wear a 'chemo ' headband chiffon tied headscarf, times when I feel I need/want to wear the wig, times when I think to hell with it I'm going au naturale as you call it and times when I decide I don't want to go to something at all as I don't feel confident enough with any of those options , but I've decided that that's ok. Any of those are ok and I can allow myself to do whatever feels comfortable to me at any time. I think that realisation is what has given me a feeling of freedom. Hope your new wig is good - is it the same or different? I'm getting mine cut a bit as it was a little bit too long. I'll still wear it occasionally as I have a couple of things to go to when I won't feel happy or confident enough to go without anything or with a headscarf as they're both dress up do's and with lots of people I don't know. I don't feel like going to them and feeling like I have to explain things in conversations! With people who know me they've seen me in all my headgear or not now.
My nails are starting to recover and the ones that fell off or broke half way off are growing now. Eyebrows are slightly darker and it looks like I have some which is funny as before the bc they were so fair that they didn't look very obvious :D. Lower lashes doing better than top ones although a few of my top ones are a bit 'crinkly' weirdly so hope they grow better and don't stay like that! I don't want curly eyelashes :D.
As you say, it's good to hear how everyone is getting on. We are becoming cancer survivors not cancer sufferers!
Sue F xx
Aine
Member

Re: October 2016 starters

Auntie Julie - fantastic to get that op over - spoil yourself from now on!  Remember that feeling terrible over the next few months is what we all had to endure - and it will eventually be over and you will feel better when it is over......Im 3 months post chemo and I am glad to say that I feel better every day.

 

Sus - I am so impressed by you doing the 'itch or ditch' as I call it!!!  I have a nbr 2 hairstyle also and havent the confidence to go au naturale yet!!! 

 

I was at a fatigue workshop today and one of the girls has a nbr 1 grey hair and is showing it off proudly.  We went to starbucks for lunch after and you know something no-one batted an eyelid at her and I was watching.

I think it is becoming more common to see skinhead haircuts on women.  I am hoping mine will grow quickly - I look awful - my wig is great but you can see a bit of hair around the hairline and it looks odd.  I am not the 'ditch' kind.  My wig mesh is getting loose and looks odd.  I am entitled to another wig now and hope to get it next week.

 

Anyway - fyo - my SEs are diminishing - hands are a good bit less sensitive and the numb toes seem to be improving.

 

Herceptin - bad aching legs have now gone - I am completely convinced that my pushing myself to exercise has helped enormously.  Girls - force yourself to get up and move more!  Take shorter rests and keep going....it will help you physically and mentally.

 

Keep letting me know how you are getting on at this stage - it is sooo interesting to hear how you are all getting on....

 

Be good to yourselves

Aine x

 

suebond88
Member

Re: October 2016 starters

Good evening everyone,

i too am on Letrozole and am experiencing bone/muscle aches 😔Am hoping they will subside as my body gets used to the medication - it's been two weeks now and sometimes it feels as if I've done a major workout in the gym! Am waiting for my bone density test, and am due to start radiotherapy on 10 May.  Had my tattoos etc last week....

my surgery scar is healing well and on the whole am feeling much more myself, although my nails are rubbish (toes and fingers)  - seems to be a common problem🙄

 

Aunty Julie - hope you recover quickly from your surgery - stay strong.

 

Sue F. - well done on your 'damn it all' moment this afternoon, I'm sure no one was looking/noticing and if they were - it's them with the problem👍

 

Can't believe how cold it's been the last few days - we've had (Derbyshire)  snow flurries, hail and sunny moments too, but because of the wind, it's felt like winter!

 

has anyone been told whether they can have chiropractic treatments?  Used to have them regularly post BC, and need to start again (shoulder/elbow) - am waiting for Dr to get back to me, but just thought I'd ask..😀

 

SueBxxx

 

 

 

Sus12
Member

Re: October 2016 starters

Like Dawn I left my Letrozole until towards the end of radiotherapy. I had 15 lots. Have been taking it for 2 weeks now and no problems with it so far.... fingers crossed!
I had a ' damn it what the hell' moment today lol. Was meeting my sister in John Lewis's for lunch and it was quite warm and sunny and my hair although like a serious No 2 cut and still almost white with darker bits peeping through I thought no! I'm fed up up of covering up so no wig, no hat, no scarf/headband thing so just brazened it with my chin in the air and just with my dangley earrings...er with clothes on though :D.
Did anyone stare? No. Well if they did I wasn't bothered about them.
After months of tears and feeling like I can't go out without my wig or a scarf or hat and hiding away if caught without when someone comes to the door, I feel like I've conquered a huge emotional hurdle. A little thing in the big scheme of things but a very very big thing for me 🙂
Thinking of you all and sending big hugs for the days and weeks to come and especially for those of you still going through treatment.
Sue F xx
OldDawn63
Member

Re: October 2016 starters

Auntyjulie - well done for getting to the next stage of the treatment plan. Have a good rest now, and hope you aren't in too much pain and discomfort.

 

Your aches are probably Letrozole not Herceptin. I (naughtily) delayed starting the Letrozole until the radiotherapy was nearly finished, so I can be pretty sure that the Herceptin hasn't caused any aches and pains. I have been taking Letrozole for just over 2 weeks and have no extra bone or joint pains from it but my joints are creaking more! I am also taking Adcal tablets to prevent calcium deficiency.

OldDawn63
Member

Re: October 2016 starters

Snail - brown envelopes are rare in our office these days, the stationery is strictly rationed.

Auntyjulie
Member

Re: October 2016 starters

Hi girls, I had my Mastectomy yesterday, tried to stay as calm as possible! Hard work lol. All done and dusted and the next step completed. Radiotherapy next. Don't know if it's the herceptin but suspect it's the letrozol making my body ache like a good'n especially my feet! Have a decent crop of even hair and rubbish nails!
Snail888
Member

Re: October 2016 starters

Just the thought of it all sounds stressful!! Isn't it normally brown envelopes in a pub car park? Well that was the rumour 30 years ago!
OldDawn63
Member

Re: October 2016 starters

Snail I would never get away with it, even if I wanted to be a dodgy planning officer, which I don't. My property empire consists of my share in our house. I am not going to be renting out the shed and garage as HMOs, mending cars on the front drive, or dumping rubbish on the open space at the back of us any time soon!

 

 

Snail888
Member

Re: October 2016 starters

Perhaps you should try the dodgy planning officer route and retire to Barbados? An officer in Stratford has just been exposed but as he's no longer in the country seems they cant do much! I think almost all jobs are stressful and we need to protect ourselves as much as possible c
OldDawn63
Member

Re: October 2016 starters

I'm still trying to get back to work after finishing radiotherapy. Dealing with developers and councillors is probably a doddle compared to kids, but I don't know how well I will cope after such a long time off. I've asked for another OH appointment before Easter, just before radiotherapy finished, but have heard nothing. Had to go back to GP last week for another sick note to cover me for the next month.

maryminder
Member

Re: October 2016 starters

Hi Everyone,

Well all active treatment finished at the end of March so have been trying to get myself energized but failing miserably, doing short walks every day but just so tired all the time and have been having quite a lot of discomfort and restricted movement in my shoulder (mastectomy side) which seems to have gotten worse during Rads, have been doing arm exercises but I am seeing my Onc at the end of May so if still not right will get it looked at, have a host of questions re diagnosis, treatment and prognosis so that I can try and make sense of it all.

 

I had taken early retirement in March 2016 and fully intended to get some sort of part time job in the summer but was diagnosed in June, so not working meant I have been able to concentrate on getting through all the c**p, finances have been tight at times but managable, will probably wait now until after reconstruction before dipping my toe back in the rat race and then only part time, OH and I have spent some time mulling things over and as he also had a major health scare 3 years ago (aortic aneurysm) we are looking at getting a better balance for both of us.

 

Hair is going crazy but still wearing hats as not brave enough at the moment to venture out without them, eyebrows and lashes are growing, nails on hands and feet have been affected (yellow and peeling), I have started on the Letrazole (10 years) and Ibandronic Acid(3 years) so far so good with regards to SE's, have found myself very emotional recently and strangley felt cast adrift by the doctors etc for a while as no longer back and forth to appointments, spoke to my BC nurse who helped calm me down and helped me see that someone was always available if I needed them.

I have my dates for the Moving Forward Course and the first meeting is on the 2/5, it's been lovely to have all you ladies on the forum to chat with but I realised I haven't actually spoken to anyone face to face who has been through this as well other than a few words at clinics etc, I have heard really good reports about the course so will let you know.

 

This weekend I am venturing away from home with my sister, we are going to Weymouth on an organised trip by coach and I am really looking forward to it, we will find a nice bar on the seafront and watch the world go by like a couple of old fogies Smiley LOL

 

Hugs and best Wishes to you all

Mary xx

Snail888
Member

Re: October 2016 starters

Karen I really feel for you. I went in to work 1 a level lesson a day for 2 weeks before easter and got sucked into a whole load of stuff. My school is in all sorts of trouble and I have negotiated down to 0.4 but still not happy. Another teacher on maternity leave had her ast role made redundant but has decided to come back part time in september. Turns out this means she will get all the sixth form lessons and I won't get any. I wonder why I'm worrying about it as I'm still going through treatment. I'm hoping to sort out counselling once I'm done as I think it will be when reality hits me xx
miss.mc
Member

Re: October 2016 starters

Hi everyone
Sorry I haven't posted for a while...again. Have had a few wobbles and decided to take up the offer of counselling at the South East Cancer Help Centre. 1st session at the end of this week. I think it's all been a bit much trying to do the cancer thing whilst also dealing with Dad being in & out of hospital, eldest child stressing about impending A levels & university applications, (middle child not worrying enough about impending AS levels!) & dealing with redundancy and my new employer pushing the school into insolvency. I am coming to the conclusion that I am ok at holding things together whilst it's all going on, but then it all sweeps over me as I head towards the 'finish line' & start to relax a little. I suppose it's to be expected.
I am feeling very much in limbo land. My ex-colleagues have all been applying for other jobs but I'm not in a position to do that yet & like you Aine (I think), I'm not sure how I feel about going back to teaching. I realise that I no longer want to have so MUCH of my time scheduled & dictated by someone/thing else. 8am-5.30pm daily plus another 2-3 hours marking at home nightly, weekend planning, prep, more marking & assessment & half the holidays likewise is not a good work-life balance. I'm assuming it's similar for the other teachers in this group. Really not sure what I am going to do.
I am about halfway through my rads. So far so good. No soreness or skin problems yet, though I guess I am just getting to the point where they kick in for many people. I will keep plastering on the Aveeno & lovely organic oil my sister gave me for Xmas.
My nails have also started to suffer recently. lots of finger nails breaking off at the same point. some of my toenails going brown. 😝
Hair on my head seems to be growing quite rapidly, but is very fine and uneven. There is a large patch right at the front in the middle that is incredibly sparse & the rest sticks straight up so I look like a startled baby bird. also seems to be quite a bit if grey/white. I think it looked better when I was totally bald - I could just brazen that out & put on make-up & earrings etc. This patchy halfway house just looks ridiculous so I have to keep it covered. I am finding wigs & hats far too hot most if the time though - has anyone found any nice cotton hats that work ok? I tried scarves, but somehow either looked like a pirate or a gypsy. I guess I need to practise with them a bit more. Still have some neuropathy in toes on my left foot and fingers of my left hand most mornings when I wake.
I started on the Letrozole the same day as my 1st rads. Haven't noticed hot flushes increasing at all yet, but it's early days. They did do a DEXA bone density scan before I started though, so there is something to compare to. I also have to take them for 10 years as I am 51. I am not quite in the swung if taking them yet & keep forgetting so it's not happening around the same time each day as it's meant to! 😮
I am also a little confused about my final diagnosis like many of you. Initially the news was broken to me as stage 1, grade 1 IDC with no lymph node involvement. Has since turned out to be much bigger than initially thought & includes some nodes. I know I am stage 2, but not sure if I'm grade 2 or 3. I have appointments scheduled to see the radiotherapy consultant, and another in the autumn to discuss further reconstruction/adjustment surgery - but not sure who to ask for an overview/summary.
Sorry this is such a long post!
Hope you are all getting to enjoy some of the sunshine.
much love
Karen x
Aine
Member

Re: October 2016 starters

Hi everyone! Hope you all managed to have a great Easter.

Wasn't it great to be able to get out and about!

 

I am going to make a list of questions like some of you - with a view to getting my head round the whole experience and getting it clear as to what I have been through.  I am fuzzy as to everything before chemo!  Cant even remember if mine was a grade 2 or 3.

 

My onc was off for 4 months getting a hip replacement so I should have seen her in Feb and still havent an appt.  Its ridiculous isnt it.  I have to get a nipple tattoo and get the other boob 'evened up'.  And think about when Im going back to teaching.  Realistically I will go back the last day of term to get paid over the summer.  I am really dreading it.  I have told no-one why Im off - they all think its 'womens problems' which means a hysterectomy!

 

My hair is starting to grow but certainly couldnt go out 'sans wig' yet.  I am very worried that it wont be ok for Sept when I have to go back to school. I finished chemo end Jan so will be 7 months - surely it will be ok?

 

Herceptin Nbr 9 was ok - SEs are minimal now and Im getting fitter and mentally stronger.

 

Im doing a Fatigue Workshop at the hospital - it is great crack! A motley crew of characters at it and we have a lot of laughs.  I recommend it.  Talks from physios, social workers, nutritionist, complementary therapists and rehab people.

 

The best thing I have done over the past 3 months is to force myself to exercise.

Everytime I want to lie down and sleep I have gone outside - gardening or walking the dog - and omg it has really helped me physically and mentally.  I pace myself and take a short rest afterwards.  And then get up again and find something to do.

And also going out shopping - just to be in crowds of people and passing the time of day and a wee chat with people is sooo cheering. 

 

Tesco have a great offer on wine!  My usual bottle was usually £8 and you can get 6 bottles for £5.60 each so I am going out to stock up today!

 

Keep in touch - I love reading how you all are moving forwards.  We still have to support each other in the next stage of our journeys.

 

Be good to yourselves  🙂

 

Aine x

Sus12
Member

Re: October 2016 starters

Hi Swampy.
I had stage 2 bc with a few lymph nodes involved. I had a CT scan after biopsies and surgery (WLE and full left under arm lymph node removal) but they seem to do that for everyone here. That was negative for spread. No mention of doing another so far. I was told that after treatment, CT scans may be used if there is reason to think the breast cancer has spread or recurred outside the breast.
I'm sure your oncologist will make it clearer when you see them. I'm seeing mine in another 3 weeks and like you I have a list. I want to also go over everything from diagnosis to understand it all properly and kind of pull it all together after going from diagnosis, biopsies to surgery to chemo and radiotherapy and now hormone therapy. I feel I need to do that in order to move forwards. From what I have been told recurrence or secondaries are fears a lot of people have after treatment has finished and it can take some time for those fears to reduce. I've had a few wobbles so understand yours!
Hope things go well for you next week.
Sue F xx
Truey
Member

Re: October 2016 starters

Hi Swampy,

 

My tumour was grade 3 and I did have a CT scan at the start before surgery (I had surgery first) to check for secondaries, as they already knew from the biopsies that it was in my lymph nodes and therefore invasive. Luckily it was negative for spread.

 

I saw the oncologist recently at the time I completed radiotherapy. I sort of anticipated another CT scan but nothing was mentioned. My next appointment us in 3 months, so maybe the topic will come up then.......

 

Like you I' m a bit confused as to the criteria for these things.

 

Hope you get some satisfactory answers from your Onc.

 

Sue x

 

swampy1901
Member

Re: October 2016 starters

Hi everyone

I'm having a wobble at the moment. Does anyone know the criteria for having a CT scan? Some ladies I know have had CT scans to check for spread and apparently it is the standard for Grade 3 cancers. Mine came back at Grade 3 after pathology of my operation and was also in one of the sentinel nodes but I don't know if I should be asking if I should be having one now that all treatment has been finished. I'm due to see the oncologist next week for my six week follow up and I'm jotting down all my side effects and questions to ask for when I see him

 

Swampy

OldDawn63
Member

Re: October 2016 starters

Hello again October Starters, it's good to see that most of you have now finished active treatment and are 'moving forward' as it were. My radiotherapy is nearly finished so I am hoping to return to work at the beginning of May. I have also booked myself onto a Moving Forward course in June/ July.

 

I've got Letrozole too, and like many of you I am not happy about taking it for 5 years let alone 10. As I have coped with radiotherapy better than I expected, I started taking them on Monday. I have just about got my head round the best times to take the Adcal tablets, because the leaflet says not to eat or drink anything high in oxalic acid, phosphate and phylic acid within 2 hours of taking them. This includes wholemeal cereals and bread, leafy vegetables, rhubarb, bananas, nuts, coffee and chocolate! If you take the Adcal at 10-11 am and 10-11 pm you can eat what you like for breakfast, lunch and tea, but you still have to be careful​ about snacking at night.

 

I haven't​ had a bone scan yet, so I have no idea whether I have the beginnings of osteoporosis or not. Maybe the oncologist thinks I am a bit young for this at 53, but I have been given the Adcal as a preventative. It's too early to tell whether the Letrozole are going to have bad effects, but you'll know if I start posting rants about it on the Hormone Therapy threads!

 

Why is it your nails actually get WORSE after chemotherapy finishes? None of mine have fallen off, but they definitely got drier and flaky at the tips following chemotherapy, where the ridges have developed. They are starting to get better now that new growth is coming through and I have been clipping them short to remove as much of the grotty bits as possible.

 

The return of the hair is a welcome sign though, especially as summer is round the corner. Meaning it's time to put winter hats away and wigs will probably get too hot and itchy to wear. My hair is growing fairly quickly now and I have mostly full coverage, but it isn't quite long enough to go public with yet. I also have more grey hairs than before​.  

 

Suebond88 - good news on the surgery results. I had seroma after surgery as well but it settled down eventually. They will probably tell you to carry on doing the exercises up to and throughout radiotherapy, as this helps. I also think it helps prepare for radiotherapy if you start moisturising beforehand as I did. There are monthly radiotherapy threads you can join when the time comes if you want to find out more.

 

Sus12 - hope the Hydrogel helps with the soreness. I have been given this together with something else called Instillagel in case of soreness or skin breakdown, and the advice is to mix them together before applying. I haven't had to use them yet because aqueous cream has been enough. Mind you I have been plastering it on 4 times a day. I will probably keep the gel things incase problems start after I have finished.

 

Maryminder - I have had itchiness as well, but the aqueous cream helps a lot. If you are sore it may be worth asking for something better than E45 such as Hydrogel, which everyone who has used it seems to recommend.

 

Swampy - you can't possibly be more of a raving loony than me (I probably had a head start before chemotherapy, but 'chemo brain' is a good excuse).

 

I wish you all well as we all move forward out of active treatment and towards some semblance of normality.

Sus12
Member

Re: October 2016 starters

Swampy I'll try hydrogel will ask my doc as the Flamigel trial stuff the radiologists gave me has run out although it was good. I've got some Aloe Vera gel so will try that for now. Agree about the emotional thing and Duracell bunny one minute no batteries next too!
Mary I'm on Letrozole for 10 years too but I'll ask about the Ibandronic acid.
Sue B Great news about the biopsy results 🙂 and good luck with your radiotherapy.
Hope everyone has a great Easter
Sue F xx
maryminder
Member

Re: October 2016 starters

Hi Suebond

 

I am on Letrozole as well but for 10 years, my Oncologist has also prescribed Ibandronic Acid for 3 years as this helps re Osteoporosis etc, might be worth asking your Onc about it. Enjoy the birthday celebrations and good luck with the radiotherapy.

 

Sus12, hope you have a lovely easter with your daughters, know what you mean about doing something nice after so long dealing with hospitals, can still eat chocolate so will hopefully get an egg or two but I have found that alchohol gives me hot flushes, still managing the odd glass now and then though.

 

 

 

Happy Easter to you all 

Mary x

swampy1901
Member

Re: October 2016 starters

Sus12 -   Sorry to hear that you are still suffering with post rads side effects - it can be very sore as I found out for myself. I was prescribed Hydrogel by my GP and was told to be liberal with it and used it 3/4 times daily at its worst as it was so soothing and cool. I think it's the heat that makes these things so uncomfy would a cooling ice pack help at all? As for the fatigue - that's all normal - I'm now a month post any active treatment and one day have all the energy of a Duracell bunny and the next I'm like - who took the batteries out?? But you do pick up and improve - everyone says to me how well I look (which can only mean I did look blooming awful while going through treatment!!) but it's amazing how much better you begin to feel once all the active treatment is over.

 

Mary - the tightness seems to hang around for a little while - I seemed to develop large areas of hard necrosis in my reconstructed boob but a few weeks on it seems to be softening up again but then massaging with E45 could be helping with that!! 

 

Suebond - I'm glad that your seroma has improved and that you will soon be moving on with your next stage of treatment. I'm not on Letrozole but Tamoxifen is just as capable as its counterparts of producing new side effects. The problem is working out which is a throw back from Chemo/Radio or the Hormone therapy!! 

 

I don't think we ever really know our limits lol - we are so keen to get back to pre BC normal that we forget the treatment we have all had is a lot harsher than we ever believed it would be. I have been on occasion - really emotional over really ridiculous things and live in dread of having a total meltdown. I've not been for proper counselling yet but had a really good complementary therapist at our hospice who has been a wonderful shoulder to lean on throughout my treatment. It will be interesting to see what happens on the Moving Forward course in May as hopefully I will be in the middle of my phased return to work and might be a raving loony by then. Cat LOL

 

Swampy

Sus12
Member

Re: October 2016 starters

Hi Sue.
I've just started on Letrozole as of Monday and very anxious about the se's too. My GP isn't a fan of Letrozole because of the sometimes joint pain etc but as she said to me it is effective in helping to reduce the chance of the bc recurring.....like you I'll be having a bone density scan (although I would have though they should have done one first as a baseline?!) . Will have to see how and if it affects me in any way.
I've only got a few se's lingering from the chemo too and this sore nipple from the rads. White hair fuzz showing a kind of weird thing halo of darker hair now so not sure if this is the stronger hair growing through that I'll end up with...who knows? Just glad it is growing back!
Hope you have a lovely weekend with your hubby. My OH is 60 in August and he's not impressed with the fact :D. You'll have to plan to see your kids a bit later in the year and have a big celebration get together then 🙂
Sue F xx
Sus12
Member

Re: October 2016 starters

Hi Mary
Yes you're right, know your limits :D. I'm just impatient to get back to normal and then do too much and then crash!
It'll be great for you to see your youngest son now you're though the chemo and rads. My two girls are coming for a long Easter visit and it will be lovely to get out and do things with them rather than be tied down somewhat with hospital visits or feeling rough with se's etc. Planning some nice things to do some more adventurous and some more 'chilled ' :).
Weirdly I've really gone off chocolate :D. I couldn't touch it during chemo and I still don't like the taste or the sweetness of it. No Easter eggs for me this year I've told them so I'll have to think of a substitute! Nice glass of red wine will just have to do! 😄
Sue xx
suebond88
Member

Re: October 2016 starters

Morning everyone,

 

had ad a pre radio appointment with my Oncologist and set the process in motion - should go to the hospital for a pre rad appointment within the next few days.  Seroma has settled down - am at Clinic this afternoon to have a follow up.

Have been put on Letrozole.......anyone else on this?  Am concerned as the side effects include osteoporosis and joint pain - as I already have arthritis in my hands and my mum has severe osteoporosis, am not looking forward to it! 😳  My Oncologist says to not worry as they will monitor me (bone density test surgery etc). and will change my tablets if necessary......can't help but worry though as I'll be on them (like everyone else) for 5 years.  Must admit the hormone therapy is worrying me more than radiotherapy.

It's my husbands 60th birthday this weekend, so looking forward to a weekend of celebration/commiseration although neither of our kids will be in the country😒 We should have been celebrating together but this bc reared it's head Andy I can't fly 😔

Sorry, sounds as if I'm feeling a bit sorry for myself at the moment.  On the other hand, physically I'm pretty good at the moment with only a few side effects from the Chemo lingering.

hope everyone has a fabulous Easter weekend 😍

SueBxxx

maryminder
Member

Re: October 2016 starters

Hi Sus12

 

I finished Rads 2 weeks ago today, my breast area is still quite red and feels tight, it is not sore but certain areas are really itchy sometimes, still slapping on the E45 morning,noon and night. 

 

Like you tiredness is a problem but considering what we have gone through i think this is something  we will have to deal with for quite some time, as you say some days are better than others, I am trying to do a little at a time but it is so frustrating.Smiley Frustrated

 

 The other day I had to stop halfway through doing something and was getting quite upset when the quote from Harry Enfields character Mr Chumley Warner popped into my brain 'Women Know Your Limits' and I found myself laughing out loud instead, OH thought I had finally gone madSmiley Very Happy

 

Youngest son will be home tomorrow for Easter:smileyvery-happy, looking forward to spending some family time all together, when he was home last I was still having Chemo so not the best of times.

 

Wishing you and everyone a lovely Easter

Mary xx

Sus12
Member

Re: October 2016 starters

Hi all. Hope everyone is doing ok?
I'm a week and a half post rads and my nipple area is terribly sore. I've been putting the Flamagel on they gave me but it's a bit better for a very short while but then really sensitive and feels sore again. I'm taking paracetamol to help take the edge off. Anyone else had this and/or any ideas? I'm also ridiculously tired still sometimes. I can be fine one day or for a couple of days and then seem to crash and feel exhausted and no energy. It's very frustrating!
Hope everyone is doing alright and looking forward to the Easter break 🙂
Hugs,
Sue F xx
swampy1901
Member

Re: October 2016 starters

Hi Mary 

 

I forgot that one!!  the toe nails!! Some of mine are lifting but have not gone yet and my fingernails have little ridges like tree rings!! Probably one for each chemo treatment lol!! 

It's good that you are planning to be more active - I have been persuaded to do a 5K run (it'll be a walk!! in my case!!) for Charity with my sister and niece in July so that will be fun. Cat Happy

 

Swampy

 

maryminder
Member

Re: October 2016 starters

Hi All

 

I finished Radiotherapy on the 29/3 seemed really strange not to be at a hospital, hair is growing back and like you Swampy poeple have begun to comment on how well I am looking ( must have been a right mess before Smiley LOL), one SE of chemo which has waited until now to rear it's ugly head is the loss of my finger and toenails they went a really strange colour and have now started to peel off but only the top half !!

 

I began the wonderful hormone tablets and ibandronic acid after rads and am hoping that joints etc will settle down after a while, I do not work so am trying to be more active, I get out walking most days, and i am planning on joining a couple of local support groups one of which has exclusive access to a swimming pool, so no need to worry about things popping out when in the water, and I have also decided at long last to join a choir, something I have always talked myself out of due to lack of confidence but I love singing and if I can deal with BC i can do anything Smiley Wink.

 

I am also booked on a Moving Forward course in May, will see my Oncologist in May to review treatment and then Surgeon in October to disuss reconstruction early next year, until then will enjoy the sunshine and recuperate.

 

Hugs to all

Mary xx

 

 

swampy1901
Member

Re: October 2016 starters

Hi Everyone!

 

How are you all getting on? I know the majority of us have completed or are very near to finishing our treatment regimes but it's always good to catch up.

After all the aggravation of my skin breaking down after the radiotherapy I'm happy to report that following lots of loving care and loads of Hydrogel!! my skin is now back to normal and I can wear a bra without a dressing/padding etc.

I still have a few lingering side effects - still have the occasional weepy eyes, peripheral neuropathy in both hands and feet - not painful but still aggravating. My husband said I was out for the count the other night but my feet were dancing a jig in bed - he ended up getting up to make himself a brew because it was so maddening to him (bless him!!) The eyebrows, eyelashes and yes hair!! are all beginning to show themselves. I cold capped throughout treatment so the new hair is so far is white - it remains to be seen if it stays that way or if it starts to grow with colour in. My hair is now growing the coloured hairdressers part, my normal hair colour and lots of gray/white which would have been covered by my regular hairdresser visits. Now I'm trying to decide whether just to let my hair do its own thing - I'm reluctant to colour while I have new growth as a BC friend said her hair was so porous that blonde went bright yellow and to leave off colouring for as long as possible. But my daughter thinks I'm too young to go grey!! and thinks it will make me look older and discussions about being on trend with grey are for younger people!! lol!! I am getting aches and pains particularly in my back (similar to when I was on the gcsf injections) but that could be down to being more active - gardening etc but nothing seems to ease it  - tried heat packs, painkillers, rest, gentle walks - I suppose if nothing else I could try the anti-histamines again - they worked before lol!! But then again it could just be a side effect of the lovely Tamoxifen!!

But the best thing is how finishing treatment seems to switch on a real healing vibe. People comment about how much brighter and how well I look (make up helps here - the Look good feel Better course is coming into its own now lol!) I do feel loads better - maybe it's because the treatment does really drag us down and we don't realise it.

I do have fatigued days which are frustrating but I'll have to live with those and see how things go when and if I start my phased return to work in May. But a final decision on that will be made when I see the oncologist in three weeks time. Still waiting on my next appointment with the plastic surgeon for when the next phase of mastopexy and tidying up of my reconstruction jobby will be discussed but other than that life is good and there for the living!! Oh and I'm booked onto to a Moving forward course in May because I still feel I need to sort stuff out in my head but not gone the full counselling route yet. My Hospice worker has been an angel with chats and things when I go for my reflexology treatments but sadly they are coming to an end so it remains to be seen if I need any further help there - my GP says to see how things go - it's always an option later.

So that's my update - how about everyone else? It would be good to hear how you are all getting on. We will all have good and bad days in the future but the lovely sunny days we have been having are a sign of good things to come.

 

Hugs 

Swampy

 

Sus12
Member

Re: October 2016 starters

Sounds really positive Sue B :). Bet that has given you a real boost! As you say it makes all the other rubbish stuff we go through worth it :). Yes the excess fluid is called a seroma. I had one after my surgery and they drained it which like for you made it much more comfortable. Didn't have any other problems after that.
Sue F xx
suebond88
Member

Re: October 2016 starters

Good morning everyone

so good to hear that most of you have finished the radiotherapy treatment.  What a great feeling although emotional to reach the end of the treatment journey...onwards and upwards now, with the help of this fabulous spring weather!👍😍

i have yet to start my radio treatment.  I had a second surgery 2 weeks ago, and although my follow up is on Friday I went to the Breast Centre yesterday as my left boob had become sore and swollen.  My surgeon was actually there, and aspirated 125ml of fluid -  I think the term is a Seroma?  Anyway, I am a lot more comfortable now, and a bit less worried as he also told me that the biopsy results came through clear👍 And that the Chemo had actually done it's job as there were signs of 'killed off' cancer cells. So all those treatments, cold capping and side effects were worth it...

my medical team are having a meeting on Thursday to discuss the next stage of my treatment, which will probably be radiotherapy, will find out on Friday.  So I've been keenly following all your comments and advise re dealing with the radiotherapy.

here's to us Ladies 👍 And fingers crossed this fabulous weather continues...it does make you feel good 🌞🌞

sueBxxx