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May 2017 chemo starters

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Re: May 2017 chemo starters

Thinking of you Jay x

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Re: May 2017 chemo starters

You've done so well this year Mishy, your post brought tears to my eyes. Your dad would be proud of you x

Community Champion

Re: May 2017 chemo starters

Ladies - the day has arrived..... eeekss - the first mammo for mono boob at 3.20pm this afternoon - please keep me in your thoughts.... xx

Community Champion

Re: May 2017 chemo starters

Mishy - my lovely, you've just made a strong girl cry! 

 

My thoughts are with you today and I know your Dad will be looking down at you and feel proud of what you've achieved throughout this past year.  Losing a parent at any time is tough but whilst going through chemo, etc - what a real tough cookie you are.

 

So a big virtual hug for you my love - feel proud and give a big smile! xx

Member

Re: May 2017 chemo starters

Hi Annie lovely to hear from you how are you doing? Yes they are a wonderful place really helped me get through treatment when my dad was diagnosed with cancer and passed away whilst i was having treatment, i really don't think I could have got through that week without them, they truly are an amazing organisation such a shame we have to access this kind of help from a charity not the NHS but Maggies is wonderful
today is my cancerversary, i have been awake for a while and reflecting on this last year so much has happened, i never anticipated what was ahead of me, how much inner strength i actually had, i feel happy i am alive today and now treasure my life in a way i never did before, today though is also twinged with a little sadness at my loss if my dear dad, he was there a year today when i came home from the appointment... telling me to be strong he was the voice of reason when i was having a wobble would give me a reality check if i needed it never treated me differently because of the bc and now he is gone.. i will cherish my memories and keep my promise to keep strong and live my life πŸ’–
Community Champion

Re: May 2017 chemo starters

Mishy, Maggies will see you right. Never had such swift action as when I contact them. On the plus side ( is there one?) I was told that pain will be my constant companion for a while. Meaning years! Oh joy 😱 What we have had done to our poor bodies is so very invasive, and the rads leave so much scarring. My poorly breast does get quite hard and lumpy at times, but my registrar said it was quite normal after he examined me. A hot shower helps me. Hope everything went well with both counselling and examination. πŸ€ X

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Re: May 2017 chemo starters

Thank you for the Bra tips ladies...

Its really iinteresting for me reading how you are all doing after the treatment...

I like the phrase The new normal for me!! Think thats one I will have to accept for the future.

Us January 18 girls are all crawling to the end of Chemo now thank goodness. Its such a huge journey we go on together.

Shi I had no idea you had a scare lovely lady...Im so glad its all ok xxx

Community Champion

Re: May 2017 chemo starters

Yes Mishy - after my operation (full lymph removal and right mx), I had 2 drains - after 10 days or so when they were removed I noticed definite "Lines" going the length of my trunk - these were identified as cording, I also had lines running from my armpit to my elbow - you could see this more clearly and I thought it was ligaments - but again I was told this too was cording. Thankfully with lots of stretching exercises and gentle massage - they disappeared (still ocassionally painful but no longer visible) that was until 3 months after rads when the discomfort returned with a vengance!! Breast surgeon however, settled my mind with the fact that rads cause lots of internal scarring and this takes a very long time to go - and indeed may never totally go. So unfortunately, it's there for a few years - it is helped enormously with exercise (mainly stretches to the areas affected). However, as always - we have to be really careful with regards to lymphodema occurring.

However, I fear it's the "new normal me" and I guess we must make the most of simply being here and enjoy the simple things in life - which I certainly do!

Take care and I hope the medics help alleviate your fears my lovely x
Member

Re: May 2017 chemo starters

Trisha that sounds nasty i am going to be seen in clinic soon How long has this been going on for you, my boob is alot smaller than other following surgery but still feels a little bit swollen i hope your bra inserts start working for you soon xx
Jay i think you are spot on too re the scarring i have noticed its gradually became a lot more lumpy along scar line x
Member

Re: May 2017 chemo starters

Tried zip my favourite coat up yesterday. Right breast become so large that I couldnt :-(
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Re: May 2017 chemo starters

Shi over the moon everything is ok what a relief for you, an appointment is being made for me to attend bc clinic for a check up should be within two weeks they explained it could be new scarring or lympodema starting in breast so at least they will be able to check it and if it is lympodema starting it can be treated before it becomes a problem xxx
As always you ladies are the voice of reason and all advice is received very greatfully 😊
Shi Community Champion
Community Champion

Re: May 2017 chemo starters

Thanks jencat 😘😘 πŸ’•πŸ’•βœ¨βœ¨Shi xx
Member

Re: May 2017 chemo starters

Shi, so glad to read that everything is ok. Must have been very scary for you finding another lump xx 

Shi Community Champion
Community Champion

Re: May 2017 chemo starters

Mishy πŸ‘­πŸ‘­πŸ‘­πŸ‘­I’ve been for ultrasound and exam today as I found a lump in same breast as you know and all ok, thank God. The consultant said I’d done the right thing and any concerns they would rather see us, so know you are doing right thing lovely and don’t think any of won’t be going 😳😳😳at the slightest thing now, we are human and not robots, please let us know how you get on πŸ˜˜πŸ˜˜πŸ˜˜πŸ’•πŸ’•βœ¨βœ¨βœ¨Shi xx
Member

Re: May 2017 chemo starters

Thanks ladies rang my bc team just waiting to see if they want to have a look x i know about the scar tissue i feel like i probably have a bit but its more the swelling im concerned about x i have been doing quite a lot this last week and wondered if maybe i have done too much!!!! Sometimes i get carried away apologies for the panic stricken post earlier πŸ˜¨πŸ˜‚πŸ˜‚πŸ˜‚
Community Champion

Re: May 2017 chemo starters

Trisha - I think it's a cross between lymphodema and scar tissue - we really must make a conscious effort to do lots of stretching exercises - but not to jeopordise our risks of getting lymphodema in other areas - an absolute minefield! x
Community Champion

Re: May 2017 chemo starters

Mishy - rest assured I'm quite sure it's purely scar tissue. Without the rads - ladies suffer with marks and aches but ladies who also have rads (like us) there is almost certainly going to be lots of scar tissue and the only way to ease the discomfort (I've been told) is exercise - unfortunately, I don't think it will go away any time soon - it's a case of living with it! I've done lots of research on the subject!!!
Member

Re: May 2017 chemo starters

Mishy. I have the same. BC Nurse said wear sports bra and she gave ma pad witj soft squares that make indents on the breas r meant to massage the boob. Seeing her again in 2 weeks. It's Lymphodema x
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Re: May 2017 chemo starters

So ladies breast and under arm pain has been gradually getting worse last few days, woke up this morning to find lots of pit marks on bottom of breast also a kind of line of swelling coming down from scar i put my very soft cotton sports bra on then took it off before to have another look at breast and the seam has left a indentation right across the full breast yet my ither breast is fine im really freaking out about the pit marks im at at Maggies for counselling this morning and have rang to see if anyone there can have a look they have said yes but they may havr to get me in with a specialist nurse xxx
Community Champion

Re: May 2017 chemo starters

WolfEE - this is exactly the view I have! I also have the tight feeling across my whole MX side, base of neck and shoulder (on the right hand side too - and I'm right handed!) - again, the breast consultant said the only way is regular exercise. Even with exercise it will probably never get totally better! As Daffodil suggests, I do my stretches throughout the day - I stretch up higher than I need to when I get things out the kitchen cupboards - when I'm waiting for something I'll do a few random bends and stretches - whilst out walking I'll swing my arms around like at gibbon! Honestly, it's the only way forward - I'm sitting here now laughing at the image I have of us in London!!! I do find that if I don't do any stretches for a couple of days - I'm back to square one and can hardly move!
Member

Re: May 2017 chemo starters

I had some cording a few months ago. Do persevere with exercises, but my bcn said that it is fine to count stretching for items etc as exercise. I often just stretch my arm behind my back and over my head while doing other things. As I go to the gym several times a week and go to yoga and Pilates, I count that as my exercise too as we stretch a lot. It seems to have helped get rid of the cording. Good luck.

Member

Re: May 2017 chemo starters

Morning, so when I saw the surgeon yesterday she said the right feeling in my arm is cording. Has anyone else had this. Apparently I’ve got 2 do my exercises 3 times a day for life (because of the lymph nodes being taken out) I know this is for my own good but actually it’s not practical and time consuming I don’t think with all the will in the world around work and normal life I can fit in three lots of the brining exercises!!!
Community Champion

Re: May 2017 chemo starters

RosieH, well done on surviving chemo! Yay!  I had a single mx, no recon yet and I had M&S post surgery bra. It's like a sports bra style with zip front so it's easy to get in and out of after surgery.  It's very supportive but you may feel you need a rest from it after a while, so....  I also purchased some cheaper soft sleep bras from Amazon which were really good.  These were "Junlan" nursing sleep bras and although designed for breast feeding were very comfortable post surgery.  For the first few days after surgery move around as little as possible to reduce fluid build up.  Do you Physio but don't put much effort into it at first as you don't want to irritate the surgery area.  You can build up the stretching gradually and your physiotherapist will keep you on target and let you know when to push a bit more.  If you want to have a look at my blog you may find some useful tips in the surgery thread. Lifeafterlola.blogspot.com

Hope all goes well for you. Xx

Member

Re: May 2017 chemo starters

Hello RosieH I had double mx and DIEP flap recon. What type of recon are you having?

 

I got some good value post surgery bras from Asda and also one from M&S, bit more expensive but really comfortable and supportive and you can claim the VAT back! Initially I was advised to wear a sports bra and I got a really supportive one called β€œ shock absorber β€œ, it was tight but helped to keep the shape in the early days. I now wear it when I go to the gym. Again it wasn’t cheap although you can often get deals on sports shop websites and I’ve certainly got good use out of it.

 

Community Champion

Re: May 2017 chemo starters

Hi RosieH - welcome to our May group!  We're all a little quieter on here now as we've moved to a secret facebook group.  

 

Congratulations on finishing chemo - it's such an amazing feeling which I can still remember from last August when mine was completed!

 

I'm sorry I can't personally help with the post surgery bras - I had a single MX with no recon as I had to have rads.  

 

I will put a post on our facebook page and ask if anyone can help you.  What kind of recon are you having?

 

Good luck with the surgery when it arrives.  x

Member

Re: May 2017 chemo starters

Trisha, if you're going in Europe try Eurotunnel (regardless of whether you're travelling with them). They don't want to know any medical issues, let alone ours. They just require that your doctor/onc ok's you to travel. I've got secondaries and an annual insurance for us both was Β£70ish pounds. I don't know the exact details as I couldn't face all the questions so I delegated it to OH. About time he helped with holiday bookings.πŸ€£πŸ˜‚

Going further afield was a nightmare Β£500 for 18 days in Seychelles was the cheapest.
Member

Re: May 2017 chemo starters

Me too Mai I'll try again tomorrow x hope you are well x
Member

Re: May 2017 chemo starters

Mai7, tried to look at the petition, but it won't let me, says access denied, so not sure how to go about signing it! I was able to look yesterday though! x

Member

Re: May 2017 chemo starters

Signed too x
Member

Re: May 2017 chemo starters

Hi Ladies

Ive just popped in from the January 18 starters group.

Ive finished Chemo YAY and Ive got my double Mx with recon in 3 weeks.

Im trying to find the baset post surgery bras...apparently you ladies on here are experts?

Any advise on bras and coping after surgery greatly received xx

Community Champion

Re: May 2017 chemo starters

Hi Mai - thanks for posting this - I've signed it J x
Community Champion

Re: May 2017 chemo starters

Ladies - if you're not on our facebook group but would like to come to our meet up on Saturday 12 May in London please do pm me on here for more details.

Member

Re: May 2017 chemo starters

I've just signed it.

 

H

Community Champion

Re: May 2017 chemo starters

A petition to sign opposing new proposed breast screening follow up: 

https://forum.breastcancercare.org.uk/t5/Diagnosed-with-breast-cancer/Breast-cancer-followup-problem...

Member

Re: May 2017 chemo starters

Thanks Jay . Will look x
Community Champion

Re: May 2017 chemo starters

Trisha - there is a thread "lympodema" under going through treatment - there are lots of posts relating to the subject and I believe breast lymphodema is mentioned on there quite a bit.  Might be worth a browse x

Member

Re: May 2017 chemo starters

Any tips on Breast lymphodema?
Also an insurance company for travelling abroad that will accept me???l
Member

Re: May 2017 chemo starters

Yes def feels better now and I can focus on getting back to being me. I just felt like I was on a treadmill that I couldn't get off and more was being put on me! 

 

Hx

Member

Re: May 2017 chemo starters

Hi Heather do you feel like a weight has been lifted, iys best to make thr right decisions for you if you weren't happy it wouldn't e good for you in rhe long run x
Member

Re: May 2017 chemo starters

Hi all. Not sure who is on FB and who isnt now. Handed in my notice at work yesterday, should finish next Friday as so much annual leave left. Feeling relieved and somewhat calmer about life! Enjoy the weekend everyone, not so sunny here today.

Member

Re: May 2017 chemo starters

πŸ‘‹
Member

Re: May 2017 chemo starters

It just making marks on my breast but BC nurse said that's what it is meant to do. She will.look at.boob ahain on 8th May when I see Oncologist x
Member

Re: May 2017 chemo starters

Fingers crossed Daffodil its not x a girl who is on my where now course has it but her arm isn't swollen she wears the sleeve to prevent it her symptoms were pain under her arm and stiffness x
Member

Re: May 2017 chemo starters

Good to know i might get mine checked i suppose irs better to catch it before it goes into arm x
Member

Re: May 2017 chemo starters

Hi Mishy. When I saw the reconstruction surgeon last week, he looked at the reddish swelling I have between my breast and axilla, and has brought my appointment with my surgeon forward so he can check it. He thinks it may be a bit of lymphoedema but would like a professional opinion.

So I will get checked in 10 days time.

 

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Re: May 2017 chemo starters

So decided not to take the sertraline anymore made me feel like crap yesterday so had a bath with lavender and chamomile essential oils and have decided to get myself some rescue remedy and try that fir my wobbly days im not knocking antidepressants if they work with no side effects but i felt worse after taking it yesterday than before will speak to my GP when I see him next maybe I'm not tolerant to that pill but definitely don't want to feel like I did yesterday x
Putting my positive pants on today hope it helps!
Trisha how you finding using the bra insert i have some swelling in my breast too and its quite painful i wonder if i should get it checked at my surgery follow up he said the nurses would probably class it as lympodema but he wasn't inclined too just some post treatment stuff!!! What do i make of that!!!
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Re: May 2017 chemo starters

The exercise bikes are the ones with seat πŸ’Ί backs so you lean back and hold bars low down at the side. This is perfect for me as I don’t think I could lean forward on the handlebars of a normal bike yet. My chest muscles aren’t strong enough.
I enjoy the workout on my legs.
Member

Re: May 2017 chemo starters

Hi Jay
Yes the beta blockers do have side effects. Main one being low blood pressure and dizzy spells. That is why I have been dropping the dose very slowly.

The treehouse looks great from the outside but will be full of cobwebs from the winter yuk!

Have not really thought about lymphodema and exercise. They are cardiac nurses so I doubt they have considered it either. I will keep an eye but all good so far.
If anything I think it is helping with my shoulders, getting my strength back.

The night sweats are back and affects my sleep grr. ( if that’s all I have to moan about I’m doing good)
X x x x x
Member

Re: May 2017 chemo starters

Hi. BCN
didnt say x
Community Champion

Re: May 2017 chemo starters

Trisha - don't suppose your bcn identified the reason for the possible lymphodema - I just wondered if it's caused by the surgery or the rads? x