Hello

[NickAl]

Hello everyone. I am new to this but it would be nice to share like experiences. I am around 5 months post op, back at work and suffering from side effects of letrozole and still in quite a bit of discomfort. Any advice ladies?

[Louisejr]

Hi there I'm 3 months post op - and also suffering with side effects from letrozole. I also have to have zoladex injections every 28 days. I am gradually increasing my hours at work. Have felt pretty pants the last couple of weeks but keep plodding on as it's all better than the alternative. Just have to keep positive, the other ladies on here are wonderfully inspirational too. Louise xx

[NickAl]

Thank you Louise. I know that the symptoms are better than the alternative, it is just frustrating as I have always been so active. Being back at work full time is great psychologically as is equals some sort of normality. And it helps us save for holidays. The BC has certainly put a new perspective on life. Reading through a few posts, everyone seems great and very supportive and who know what they are talking about x

[Louisejr in reply to NickAl]

I completely get the frustrated bit. It is taking such an effort to go to work each day but it's good to be back amongst my friends and feel some normality creeping back in. I have been a bit weepy this week and feel such a wuss - not sure if that's the drugs killing off my hormones or just the general enormity of it all kicking in. It's really good to know that others have side effects I didn't want to blame all of the stuff that's happening on them - just hoping it all evens out over time xx

[NickAl in reply to Louisejr]

I sometimes get weepy and put it down to the hormones. It seems we can always blame them for something. It is like being menopausal/pre menstrual again. I seem to get a bit irrational verging on paranoid on occasions when all my life I have been level headed. There is no doubt it turns your world upside down. I am positive despite my little gripes but sometimes when time to think the enormity of it all hits me. I am sure these feelings will pass. xx

[Louisejr in reply to NickAl]

I'm sure they will - my mum had it 10 years ago and she just keeps telling me I've just got to go through it - and it will all come out in the wash xx

[NickAl in reply to Louisejr]

Ha ha. My mum has a different way of coping too, brush everything under the carpet! If you are working today, I hope it goes ok and take care xx

[Louisejr in reply to NickAl]

You too xx

[NickAl in reply to Louisejr]

Hi Louise. How has your day been?Some truly inspirational ladies on here. Mrs Nails hit the nail on the head if you pardon the pun. What a star!! Feeling tired tonight and arm feeling swollen and painful. Lorraine has given us an excellent routine to relieve it so here goes then a soak in the bath. Alison xx

[Louisejr in reply to NickAl]

Hi Alison a bit of an up and down day again but feel better after being to the GP and her backing up the fact that it is partly the drugs that's making me feel this way. Yes the ladies on here are wonderful, it is soooo good to be able to off load when it's a bad day, and get the lovely responses which keep you going.

Hope you had a lovely soak - take care Louise 😘Xx

[NickAl in reply to Louisejr]

Thank you Louise. Friday tomorrow and ready for a relaxing weekend. Must make a bit more time to do my exercises but when working there seems so little time. Pleased the GP was supportive, that makes such a difference. Have a good night and we can chat tomorrow. Alison xx

[Jacbowden in reply to NickAl]

My mum does that too, saves her a lot of worry - burying her head! Mind you, she's 90 so is excused!

[Jenny1410 in reply to NickAl]

Takes time but you will get there sometimes I spend all day in bed it's the right thing to do full of steam one day emotional the next

[NickAl in reply to Jenny1410]

The evenings are difficult, no energy, hot flushes and aches and pains worse. Sleeping a problem as I sleep on the right and it is still very uncomfortable. Not sure if this is normal 4 months down the line xx

[Jenny1410 in reply to NickAl]

Normal for me struggle to roll over sometimes feels like my ribs are broken my arm is so heavy and I have cording under the armpit due to lack of exersices for some it's easier others takes more time I was always told don't rush it it will come

[Jacbowden in reply to Jenny1410]

It could have been the strong words from the surgeon before my op, when he said don't hold back from moving your arm and shoulder, because we haven't operated on that. " Keep hanging out the washing" were his words! Anyway, from day one I exercised the arm, hoping for the best. Three weeks later I was on the golf course ( I'm a learner and didn't want to go too far backwards) with my son doing the big shots and me the chipping and putting! It's been over three months now, but I'm teeing off as well as before ( which wasn't not that good!! Haha). I do get some pain, tightness and weird sensations but it is a radical kind of procedure so I accept that. I think I felt 'cording' under my arm (felt like tight tendons) but I ignored it. Be kind to yourselves ladies, but also keep moving!

Love to you all for,your stoicism and bravery!

[Jacbowden in reply to NickAl]

Nick, I am feeling for you too. Yes, the enormity of it does creep up and take your breathe away and bring tears, but our mind is such a powerful tool. We can focus it on our healing. Finding ways to cope ( relaxation, meditation, spiritual guidance) are all ways of helping us cope. Best of all is time out with true friends and a really good laugh. ❤😘

[NickAl in reply to Jacbowden]

You are so right, time to laugh and play. My husband and I have a new perspective on life. I have been taking a selection of vitamins along with the letrozole and accrete D3. Which I think do help. Looking in to homeopathic remedies to relieve some of the symptoms. Thank you for your kind words xx

[Lainey66]

Hi there I am exactly 1 year post op. My consultant has refused to sign me back to work. I have decided that early retirement is now on the cards. I still get days when I feel quite fatigued. I am on anastrozole and have joint pain and hot flushes. The anastrozole is purely experimental as I am triple neg. This is being reviewed at my 3 monthly check up in March. I rest when tired but otherwise keep as busy as I can. I have huge loss of sensation and pins and needles in hands and feet from the chemo. This tends to make me trip over. Despite this, I feel good. Rest when you have to. I admire you for returning to work as early as you did. Lainey66 xx

[NickAl in reply to Lainey66]

Thank you for your reply. I admire you for your positivity through what sounds to be an awful time. It seems quite common to experience the horrible numb, tingly, nerve pain, fortunately it is only in my arm shoulder and ribs. I have an appointment at the lymphoedema clinic in a week or so. There is some swelling there but not too noticeable. Have a good day, rest when you can and it would be lovely to chat later xx

[Lainey66 in reply to NickAl]

Yes the dreaded lymphoedema. Its my left arm and slight barely noticeable swelling in my hand. I just lightly stroke the dkin woth my arm raised when it decides to flare up. That helps. It will be lovely to chat later. You have a goid day too 😀😀

[Lorraineam in reply to Lainey66]

I also have slight lymphodema in my left lower arm. Have you been referred to a lymphodema service? I was referred and was given a massage routine to do, which involves squashing a ball under your arm and a strict order for the massage. If you haven't been referred I'm happy to share the routine with you x

[Lainey66 in reply to Lorraineam]

Please do share Lorraineam. I will definitely give it a go 😀

[Lorraineam in reply to Lainey66]

Ok here goes. You need a squashy rubber ball slightly smaller than a tennis ball and some sort of cream for the massage. I use vaseline intensive care but any body lotion or cream would do.

Start by taking 5 deep breaths.

Put the ball under the unaffected arm and sqash it under your armpit 10 times, then do the same on the other arm.

Starting near the unaffected arm, stroke gently towards the unaffected arm, gradually progressing towards your other arm, so that you end up stroking across the whole chest area.

Next stroke upwards on the affected arm, starting at the top and gradually working down until you are stroking the whole arm.

Squeeze the ball twice under both arms.

Then starting on the affected side, stroke gently, progressing to the affected side until you are stroking across the whole chest area.

Squeeze the ball under both arms twice.

Take 2 deep breaths.

And that's it. The nurse explained to me that it is done in this order as you need to move the lymph fluid from the unaffected side before you can move the fluid from the other side, which makes sense.

Hope this helps.

PS This only takes about 5-10 minutes so isn't difficult to fit into your day xxx

[NickAl in reply to Lorraineam]

Thank you so very much. Will try it and keep you posted xx

[NickAl in reply to Lorraineam]

That would be great thank you. I have a few exercises/massage to do but fairly general. It is affecting my right arm especially upper arm. I have an appointment at the lymphoedema clinic on 25th so hope that helps. Any advice or shared experiences welcome. Thank you xx

[Jenny1410 in reply to Lainey66]

Take care all the best

[Jacbowden in reply to Lainey66]

Lainey, you are a legend! 😘

[Hidden]

Hello NickAl & Louisejr

Welcome to our group, I'm sorry to hear you're both finding things hard at the moment, I cannot imagine what it must be like to have to go back to work so soon & still struggling with side effects from your Meds & post op discomfort.

NickAl I think it might be a good idea to ring your breast care nurse to have your scar checked, what type of surgery have you had?

Louisejr if you're still feeling pretty pants try not to increase your hours further yet.

You've both been through a lot & some times the attitude 'It's better than the alternative' isn't always helpfu, the shock of discovering you've be diagnosed with BC then the surgery & aftermath takes some adjusting too!

I found when my friends said 'You'll Be Fine!' it made me really angry, how did they know?

I had TNBC a nasty, aggressive, multifocal cancer so l had a Mastectomy followed by Chemo.

The last Chemo affected my bones badly & my knees in particular, so I'm like two people, the one who can walk fine & the one who's 20years older when confronted with the stairs & a 'Good' friend of mine said 'It's a small price to pay!'

I was deeply hurt, the price we all pay for this diagnosis is beyond anyone else's understanding, unless you've walked that path!

I don't think either of you have had chance to come to terms with it all & you need a bit of 'Me' time to stop & smell the roses 🌹 wrong time of year but you know what I mean.

You've heard from our wonderful Lainey66 who's had 'The Works' to try & kick her BC into touch, a very inspirational lady. I'm Retired as I have an autoimmune disease & the stress of working was too much for me, so l had time to recover from the Surgery/Chemo at my own pace.

Living up to your Mum's expectations is difficult, they've both be devastated by your diagnosis, however they show it as we Mum's are very protective of our children especially if their health is threatened!

If you have any annual leave, try to take a couple of days off to have to yourself & do what you want to do.

Take Good Care of yourselves & Take It Easy!

Best Wishes to You Both 💐💐

Love

Mrs N 💅🏼

[Louisejr in reply to Hidden]

Thank you - you have totally summed up how I feel and others reactions too. Someone actually said to me that I should man up it wasn't that bad and I was lucky to have only had radiotherapy and not Chemo, someone who has not had any of this I may add. I didn't feel angry, just guilty - guilty for feeling sorry for myself when there are others out there that has had this much worse than me. I did feel like saying it's still Breast Cancer, still something that I didn't expect to happen to me.

Anyway, I have been to my GP today - a follow up after the infection I had last week. She was so understanding, explaining the toll that the Zoladex and Letrizole has on my body is a big factor of how I am feeling right now, along with the whole diagnosis, surgery and radiotherapy and I was totally entitled to feel sorry for myself. She had to resort to her big box of tissues as I just couldn't stop crying.

I am still going to do what work I can, but am seriously considering taking some time out too. I am so pleased I discovered this site - you are all truly wonderful and keep me going.

Thank you xx

[Hidden in reply to Louisejr]

Honestly Louise people can be so flip in their remarks, they have no idea what it's like & no matter what type, stage, grade of BC you have or the treatment path you follow it's all SH*T!

Glad you've seen your GP today & had a good cry, it'll actually do you some good!

You find out who your real friends are & who are just fair weather friends.

You'll find plenty of support here.

Take Care 💐

Mrs N 💅🏼

[Louisejr in reply to Hidden]

Thanks Mrs N 😘Xx

[Lainey66 in reply to Hidden]

Thank you for your kind words xxxx

[NickAl in reply to Hidden]

Thank you so much for your inspirational and heartfelt words. You have summed everything up brilliantly. I had lumpectomy and biopsies. The consultant was convinced that would be it, radiotherapy all sorted. Not to be. The cancer had spread and I had a second op for ANC, followed by a severe wound infection which fortunately didn't delay my radiotherapy. All that, didn't really have time to think about the logistics of it all and before long back at work. My new husband has been remarkable. We married in November and honeymooned in Orlando which was amazing. Lots of things planned as the dreaded BC has certainly given me a new perspective on life. Thank you so much for making me feel welcome and comforted in the fact there are lots of ladies out there who understanding my feelings and what I am talking about. Alison xx

[Hidden in reply to NickAl]

Hi Alison

You've certainly been through a lot but the Wedding & Honeymoon has to be the Highlight.

Maybe with so much going on you really haven't had time to process all the BC Thing!

It's a bit of a B when the goalposts move as more information comes to the fore. My Planned surgery was changed the night before because of an underlying medical condition l couldn't have a reconstruction but now I think it was for the best.

We have our 40th Wedding Anniversary this year, so lots of plans for a Special Year ahead ❤️

There's lots of us here & anytime you want a chat or have a question you'll soon get a reply.

Take Care 💐

Angela x

[NickAl in reply to Hidden]

Thank you Angela. Everyone is so kind. 40 years? How wonderful. Lovely to know us ladies are all there for each other. Thank you xx

[Lorraineam]

Welcome to the group. There are some lovely people on here x

[caroland53]

Hi there, I had my surgery just over two months ago and start my radiotherapy today. Not looking forward to it but what choice do we have? I'm also on Letrazole and have the associated side effects. I'm not feeling too bad post surgery apart from the ache under my arm. I've found the mules women here to be really helpful and reassuring! It's nice to have someone to turn to if you've got a question or just need cheered up!

Carol x

[caroland53 in reply to caroland53]

Other women not mules! Speed text! Lol

[Hidden in reply to caroland53]

I was just trying to work out what Mules was predictive text for! 😂

Hope your Radiotherapy has gone well today caroland53 Take Care 💐

[Lainey66 in reply to caroland53]

😂😂😂 predictive text is a pain

[Hidden in reply to Lainey66]

But sometimes so very funny! 😂

[Jenny1410 in reply to caroland53]

Radiotherapy not too bad just keep using the cream

[caroland53 in reply to Jenny1410]

They certainly gave me enough cream! Lol

[NickAl in reply to caroland53]

Hope all went ok today Carol. I finished my radiotherapy in September. Funny how some people think that because your treatment has finished everything is ok. I am generally positive but sometimes I feel it is easier to act and say what people expect me to! Have a good rest and moisturise ++++++ Alison xx

[caroland53 in reply to NickAl]

I'm the same Alison, I once said. ... no I'm not alright. The response was a totally bewildered look so I don't do that now! I'm always alright! My treatment was okay and the staff are brilliant. They had me relaxed in no time! Carol xx

[Debster2016]

Hi Nickyal, welcome and good luck with getting better and addressing this situation to your benefit.

All very helpful and supportive comments as always thank you ladies.

Best wishes 👣 Xx

[NickAl in reply to Debster2016]

Thank you. Have been made to feel very welcome with lots of advice and support already. Back at work full time so feeling very tired but at least back to some normality. Alison xx

[Lainey66]

Louise when I was diagnosed, I actually lost a number of people I had considered as friends. People who have never walked in our shoes should really think before speaking. You are fighting a very scary and potentially life threatening disease. You cry, scream, shout, hit pillows (as hitting people could get you arrested) as much as you like. In the meantime we are here for you. Take care and all the best for your treatment xxx

[Louisejr in reply to Lainey66]

Thanks Lainey, you do definitely find out who your friends are. I am blessed to have a very supportive husband and family, and when I find some energy I will have a go at the pillows xxx

[Lainey66 in reply to Louisejr]

You do that 😉😉 I too am lucky to have good support from my hubby, children and my family. If anything it really has brought us so close together. You take care and dont worry. Remember stress and worry can feed cancer so try relaxing - now might be a good time for a treat to yourself. I went onto booking.com and have a 4 day spa break for hubby and I (includes brekkie) for €275 for both of us - it is usually 180 pppn. So a spa break in 2 weeks. Maybe something to consider 😘

[Louisejr in reply to Lainey66]

That sounds like a fab idea - I love spa's, but I think it may just be the hot tub at the gym for me as this all happened in the middle of a kitchen renovation which I must say does not help with the stress levels. 😱 But we do plan some time away when it's all done xxx

[NickAl]

My husband and I have just booked to go to Barcelona in March. Lovely to have something to look forward to. xx