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May 2017 chemo starters

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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 “ shock absorber “, 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.

 

Member

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 £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.🤣😂

Going further afield was a nightmare £500 for 18 days in Seychelles was the cheapest.
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Re: May 2017 chemo starters

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

Member

Re: May 2017 chemo starters

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

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
Member

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
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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.

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Re: May 2017 chemo starters

👋
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
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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
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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.

 

Member

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!!!
Member

Re: May 2017 chemo starters

The exercise bikes are the ones with seat 💺 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
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Re: May 2017 chemo starters

Hi. BCN
didnt say x
Member

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
Member

Re: May 2017 chemo starters

Well done Treehouse on your rehab sessions. Do you have to be careful with regard to lymphodema and weights?

How does the bike exercise feel - it's something I want to get back to but at the moment I'm not quite ready. I'm not a keen cyclist by any means but I do like the exercise it provides.

Generally, I believe there should be more funding in the exercise part of this treatment - my authority don't provide any exercise as a matter of course. I'm going to speak to my GP when I see him in a couple of weeks to ask if there's anywhere I can go without having to fund it myself.

Make sure that treehouse is tidy for your visitors to explore! You're going to have a blast! xx
Member

Re: May 2017 chemo starters

Treehouse - I see you're on a low dose of beta blockers - do they have any side effects?
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Re: May 2017 chemo starters

Err - had blood test yesterday - only needed one file thankfully - as once my arm had given about half a tube it decided to stop flowing!  Nurse took off and put back on and gained a little more - enough she said for what they needed!  Ergh never been keen on having blood tests and like them even less now - I think it's the worry that if they can't use my good arm - where are they going to try next....!

 

Anyway to comfort myself and replace the sugar I'd burnt off panicking - I ate a whole easter egg when I got home but then I did take dog out for a walk after!

 

Today's another lovely sunny one here - going to catch up on my laundry whilst it's like this - towels today - bedding tomorrow.... oh the joys!

 

Mind you it is lovely sitting here on the sofa, bathed in the sunshine, wearing my dressing gown and listening to the lovely robin singing in the garden - oh it's the small things in life now that mean so much x

Member

Re: May 2017 chemo starters

Mishy, would it be better if you took it before bed? I used to have amytriptyline, an antidepressant but prescribed in low dose to me for pain from severed nerves. I took it at bedtime, it definitely made me sleepy.
Member

Re: May 2017 chemo starters

Trisha its sertraline they give me 50mg i only took half but feel off my head maybe it just doesn't suit me im glad what you have is helping you out x
How was your massage bet it was lovely 😊
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Re: May 2017 chemo starters

I take 1 Mirtazapine. 30mg at bed time. Is for anxiety and depression. Seems to help me x
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Re: May 2017 chemo starters

I know treehouse that is what i was thinking i kind of wish i hadn't taken it now!!!
Its definitely something i don't want to get caught up in, my mood fluctuates if that makes sense I was offered propranolol when my dad eas poorly before he died but didn't take it because i was worried about taking stuff with chemo maybe i think i will ring my GP in morning before taking pill number 2 good luck with benefits its a mind field but should be helpful till you get back to work x
Member

Re: May 2017 chemo starters

Thanks Mishy I am so confused about all these benefits.
Sorry to hear you are struggling at the moment. The only time I have been offered any help was when I got told I had 4-6 weeks in hospital over Christmas and I had a meltdown. Sobbed for 24hours and blood pressure set the alarm off. They decided giving me my own room would help ( I refused pills)
I have nothing against them just didn’t think they would help my situation.
I am on very low dose beta blockers for my heart ( but also which help with symptoms of anxiety)
Member

Re: May 2017 chemo starters

Treehouse im not really sure what that us it could be for new style contributions based ESA which is what i currently get till i get back to work my SSP ran out in Dec i never got another other pay from work straight onto SSP so i claimed ESA to help tide me over till returning to work its not means tested either i will be takung a massive drop in pay as cutting my hours back to part time from full-time the nature if my job is very stressful so feel it would not be good to go back to my full time hours
Has anyone been prescribed anti depression pills, my GP prescribed a low dose to help me short term ( my anxiety levels have been pretty bad) i am having some sessions with physcotherapist which do help alot but GP agreed tge physical symptoms i was getting warrant a little help, i have had pills in drawer for over 2 weeks now decided to take one this morning as still feeling a bit 😨 and want to get back to work soon incase they run out of patience and finish me! im not sure i like the feeling since taking it feel a bit spaced out i will persevere for a few weeks but if this is it i think I will go it alone!!!
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Re: May 2017 chemo starters

I just received a pack from work. It says my sap ended in Nov and they have enclosed a SSP1 form for me to make a backdated claim for benefits. Does anyone know what that is?
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Re: May 2017 chemo starters

That’s frustrating about bone scan . Glad they have been able to give you something for the boob and have a plan to help with pains. I am imagining strange bra inserts now , bet that feels odd.
I really hope you get that massage you deserve it after this morning.

I hav now done rehab 7. Have gone from 0.5 kg weights to 2 kg and bike setting from 4 up to 10. Nurses are really pleased with my progress and so am I.
Only got another week so will have to join another group ( I will have to pay tho)

Now time for house work as I have some special visitors this Saturday 😀
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Re: May 2017 chemo starters

Well... all geared up for the bone infusion treatment alongside Herceptin. Couldnt do it because need bloods day before. So postponed for 3 weeks. Has Herceptin and saw Breast care nurse. Dec lymphodema in my breast has given me a foam type thing witj square bumps to insert in my bra. Looks like something y would make on Blue Peter. 're the aches and pains is going speak to my Oncologist who will probably suggest stopping Anastrazole for couple weeks see if any change and then put me on a different drug. Just waiting.for.massage.now x
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Re: May 2017 chemo starters

At Oncology waiting for Herceptin no 16 and first bone infusion drug. Meet with B Care nurse too.
Hoping she can explain the swelling and skin change on my breast. Then if all.goes to plan have a complimentary massage at 1030 x
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Re: May 2017 chemo starters

Ergh I'm off for a blood test today - what was once a routine, every 3 weeks at least occurrence, suddenly becomes a major entry in my diary!  

 

At least the weather is still looking good and I'm catching up on laundry again!  

 

Return to work for me today - having had 11 days of doing just what I please - this is suddenly going to be difficult!

 

Have a great day all x

 

Member

Re: May 2017 chemo starters

Hi Jay no targeted therapies for me as TN so just looking after myself as best as possible physically and mentally im thinking of just going back part time xx
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Re: May 2017 chemo starters

Mishy are you on any kind of targetted therapy following active treatment? Good luck with the endoscopy and I hope it proves conclusive and they find a remedy for you.

Yes it is indeed the comradeship that I missed when not at work and also the routine funnily enough - having been back since January though I am now appreciating and enjoying the non-routine days just a little bit more if I'm honest....!!!! x
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Re: May 2017 chemo starters

Oh yed and weather is lovely i will def take heed re work too i find im easily tired without work!!! I am missing the comradeship of it all though!!!!
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Re: May 2017 chemo starters

Hi Jay im not entirely sure what they are checking for i know its because the stomach tablets prescribed by onc didn't work i have persistent refux bloating and feeling of food getting stuck when eating along with bouts of heartburn so my onc wrote to GP to ask him to refer for endoscopy i don't think they are that concerned just need to find cause i suppose!!!
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Re: May 2017 chemo starters

Hi Mishy - again, go slow and steady with your phased return to work. I'm fortunate in that I go to work 5 days a week - work for 2 hours (but literally don't stop in that 2 hours both physically and mentally) - and I still come home both physically and mentally exhausted! So take lots of care.

Is your endoscopy the 1st May? What are they checking for?

Hope the sun is shining where you are and you have a lovely day too xx
Member

Re: May 2017 chemo starters

Hi Treehouse - I have to do the same!

 

I've got a definiate mark of where my herceptin went this time - I've never had it all before - very strange!  I'm getting pleased and relieved that I've only 3 more to go.  After this last one (for the first time ever - I may add), I've felt "different" - the area of my mx and lymph removal have felt so tight - I've got general acheyness all over together with fatigue not helped by disturbed sleep and hot/cold flushes (which again have only re-appeared since injection!).  It's all "manageable" with exercise and gentle walking - but still not pleasant (and again I'm not really moaning about it as I'm pleased we have it).

 

Happy Birthday for yesterday - that was kept very quiet(!) - I'll go onto facebook right now and make sure that rectifies itself...!!!!  Any excuse to celebrate and eat sounds perfect to me too!

 

Good luck for the slow and gradual phased return to work - don't go overdoing it - take it extremely steady and most importantly enjoy it!

 

Hope the smear goes OK - they are indeed yuk but over so quickly.  Another life saver.

 

I've got an inset day today - my Son's school have returned - which he wasn't happy about!

 

I'm off to lunch with a very dear friend today - we're both celebrating - her because she's the one who fell downstairs and badly injured her back and now repaired and me - because I'm nearing completion of treatment and purely because I can!!  Off to Pizza Express......

 

and yes Yippeee the sun is shining here too....... x

 

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Re: May 2017 chemo starters

Happy belated birthday for yesterday treehouse i will be returning to work on my phased return as soon as i have my endoscopy which is 1st didn't seem worth going back incase i needed to have any time off because of that, work is on my mind alot which to me means im missing it now!!! Like you say Treehouse im as good as I am ever going to be can't live in this bubble forever
Jay yes i know what you mean!!!! Morning everyone else hope you are well x
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Re: May 2017 chemo starters

Hi Jay. I keep having to log back in to post a message which is odd?!
My herceptin went ahead and again has left a large red patch on my thigh ( doesn’t hurt) I feel ok.
It was my birthday yesterday and I ate out most of the weekend ( any excuse to celebrate 🎉)
I emailed my big boss for a meeting about returning to work last night expecting him to reply today. He emailed straight back so we were communicating last night. I will go in on 27th to discuss phases return. I am mixed but I think as ready as I’m going to get.

After some nagging 😜I am off ( for a very late) smear test this morning. Yuk.

Kids are off for one more day we have homework and tidying etc hopefully there won’t be any casualties.

Sun 🌞 is shining.
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Re: May 2017 chemo starters

Hey ladies - we're slipping further down the page!  x