Member
Posts: 294
Registered: ‎29-10-2016

Re: How's everyone doing.?

Sounds good news about your ms Marydan.  My friend had a relapse last October, having been stable for many years, and that was down to work stress.  She is improving again, but waiting for MRI results.

 

Zena - you don't need to go anywhere. We're a diverse bunch of ladies all with different diagnoses and at different stages, but we all support each other through shared experience of this horrible disease.

 

Strudel - well done on working today. I popped in to school on Monday for a couple of hours and still not recovered.  Don't know what's up this week but I feel really unsettled and anxious - keep worrying that my pathology results are wrong etc, and I think I'm driving my oh mad - he has been so patient through all of this but he told me tonight that I just need to get on with it and move forward - there, my eyes are leaking again at what I perceived as his total lack of understanding.  I need to borrow the superhero pants - who's got them at the moment?

jane x

 

Community Champion
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Re: How's everyone doing.?

zena

 

Absolutely do not leave this thread, unless you meant you love this thread xxx What the other ladies have said is right and you do not need to feel awkward xxx

Member
Posts: 386
Registered: ‎04-11-2016

Re: How's everyone doing.?

Oh Zena,

You didn't offend me and there's certainly no need to leave this thread if you don't want to. We're all frightened, whatever stage we're at, as no nodes is no guarantee of anything as my delightful (grr) onc kept telling me.

I was basically only pointing out that we can't be expected not to celebrate good news in case it upsets someone else, it's not really reasonable I don't think because we're all individuals with different situations; we all need support and to share our victories if we get some.

X
Member
Posts: 228
Registered: ‎22-12-2016

Re: How's everyone doing.?

Zena, don't feel bad or apologise for being scared. It's perfectly understandable. I have 5 daughters and lymph nodes involved too. I completely understand. I'm sure that nobody was offended and there isn't any reason for you to leave (unless you want to).

Big hugs.

Jo xx
Member
Posts: 311
Registered: ‎31-12-2016

Re: How's everyone doing.?

Anyway I leave this thread it's ok . I don't want to make anyone feel awkward.. thank you ladies for all the support xx
Member
Posts: 311
Registered: ‎31-12-2016

Re: How's everyone doing.?

Dear strudel
I didn't mean to offend you or anyone .. it's just hard hearing about nodes that's all, as I know how serious it is.
I had no idea that there was a small group of you that started on here together with similar diagnosis's.
I thought it was a thread for newly diagnosed and it said how's everybody doing.
Just wanted to rant as I'm scared I have 3 kids under 10 and my mum died when I was 7 .. it's not a unique story I know . But worried I will leave them like I was left ..
apologies to anyone I upset and in no way meant no one should celebrate good results.
Zena xx
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Re: How's everyone doing.?

marydan

 

Oh that is good news love your positivity xxx

Member
Posts: 228
Registered: ‎22-12-2016

Re: How's everyone doing.?

Mary, great news about your brain scan. I think you have the right attitude about your spinal scans. Onwards and upwards xxx
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Re: How's everyone doing.?

Strudel

 

That is so funny xxx

Member
Posts: 203
Registered: ‎06-08-2016

Re: How's everyone doing.?

Hello to all my lovely friends,

Well have my brain and spinal mri results back for the multiple sclerosis.

The brain scan shows no new lesions/progression which is great but there are a couple of lesions on the spine (thoracic and cervical area of spine) which the neuro says is in keeping with the symptoms I had during the scary b.c journey. My first ever relapse.

The neurologist did say as I have never has a spinal mri before there is nothing to compare it with therefore they could be old ones.

My way of dealing with it is to tell myself they have been there for ages and its onwards and upwards.

The fact I recovered so well from the relapse and the fact I cannot take any meds for the m.s due to the tamoxifen (oncologist had said) there really is no point in worrying now.

My lower back still aches but as I had the full spine mri I am putting it to the back of my head as best I can. Lots and Lots of love to you all, you are all truly an inspiration . Mary xxxx

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Re: How's everyone doing.?

Susan

 

Yay go girl, robotic demolition machines bet you can have some fun with them, I have seen them on the TV really good for use in tricky building demolitions.

 

I must admit my seroma went on its own, same as you uncomfortable but bearable, it did take several weeks though

 

Helena xxx

Member
Posts: 616
Registered: ‎25-11-2016

Re: How's everyone doing.?

Hahaha - LMFAO Strudel - very good 😂😂😂😂😂

Community Champion
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Registered: ‎16-11-2016

Re: How's everyone doing.?

Strudel

 

Hiya my dear.

 

Well I am 14 down and 6 to go.  On the whole they have not been too bad, I was using bth E45 andaloe vera, but last friday the radiographer said just use the E45 and keep it in the fridge.  I have generally been ok keeping up my water drinking to over 2 litres a day, it is supposed to help with the dehydration which contriubtes to the fatigue.  Area around the nip is a bit leathery looking and is itching today, they just said to use the E45 and that keeping it in the fridge, the E45 not the nip!!, should help with that. 

 

I generally find that I have a sleep for about 20 mins after although I have just realised I have not done that today and i have been feeling cold in the evenings but I am not sure whether this is to do with the rads or the tablets, I have decided to wait to see what happens once I have finished them to see if this goes xx

 

It is really is quite easy the session itself, takes about 10 minutes all told that is including getting on the bed, getting postioned correctly, the rad itself and then getting off the bed so very doable.

 

One thing I was told to do was to not wear my bra as much as possible, but i found that this was causing the nipple to rub against my top, my friend bought me a cotton vest bra top which has really been a massive help this past 5 days.

 

I think the hardest thing is the driving to and from the hospital it is very tiring

 

Hope that helps, if you think of anything and I can help with it just let me know  xxx

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Re: How's everyone doing.?

Susan

 

Yep they do 19th Jan, I have 6 left now, 1 regular and 5 boosters so nearly there Smiley Happy xx

Member
Posts: 386
Registered: ‎04-11-2016

Re: How's everyone doing.?

Susan,

My seroma stopped returning after the third draining so worth bearing in mind?

I also work with robotic demolition machines; mind you at my place of work we just call them senior managers. 😉
Highlighted
Member
Posts: 616
Registered: ‎25-11-2016

Re: How's everyone doing.?

[ Edited ]

Hi Strudel,

 

I always love reading your posts.

 

My seroma has come back and I now look like I have had a breast reconstruction again - but the hospital said that they would only be able to drain it another 2 times, so I'm going to leave it and let it absorb back into my body, it's uncomfortable but bearable.

 

My other boob hurts right near the nipple, I'm not sure if it is period pains, as I was told to come off my pill way back in November, but I haven't had a period, but I'm getting really bad stomach pains.  

 

I'm on my third day back to work - it's so lovely, just carrying on pretending nothing has happened.  I work with robotic demolition machines and love going into work. I'm left to do what I want, when I want, just as long as everything gets done, everyone is happy.

 

My new hat for my bald head arrived today and the onicolife drops for my nails - still doesn't seem real though.

 

Hugs to you and everyone else.

 

Susan

Member
Posts: 386
Registered: ‎04-11-2016

Re: How's everyone doing.?

Evening all,

Firstly I hope it snows in Ali's garden so that she can have a snowman. Other than that I'm with Jane, no snow please! I would be so screwed getting to the hospital from my shack in the sticks.

Silver, my lovely - has that seroma come back? To answer your question it's ongoing for me. Met the oncologist (well two actually) yesterday. Their plan for me is just radiotherapy and tamoxifen. We are in heated discussion about their refusal to order the oncotype test to find out whether I would actually benefit from chemo. It's ongoing but my lovely BCN has said if it is a firm refusal she will see what she can do - I suspect she means to refer it to the surgeon.

I went back to work today. That involved walking out of my front door, 10 feet across my yard to my home office but yay me anyway! I'm knackered now to be honest, by the work not the ten yard walk!

The oncologist phoned this afternoon. They're ordering a bone scan for this pesky back ache of mine. Yikes.

Lexxy, I'm currently interested in all things oncotype and would be really interested in your score if you're prepared to share it. Feel free to tell me to shove off and mind my own business, I shan't be offended! I suspect that thick skin of mine delayed my diagnosis 😚

Zena, hope you're ok. I do understand that it must be hard to read the no node thing but I'm going to be honest, I'm going to continue to celebrate the good results of anyone on here no matter what they are. When this thread first started it was a group of us with really similar stats and a couple, like Silver (hope you don't mind Silver!) whose stats were different but we were all node negative. More and more people started posting including, for the first time, people who were node positive. It was only then that I told my real life friend, Charlotherapy, about this thread because she's stage 3 as she's said and until the thread expanded I knew there was no one else here in her position so I am conscious of what you're saying. This thread now caters for everyone and node negative is something to celebrate for those to whom it applies but I completely understand if you feel you can't respond to those posts and nobody would expect you to, we're not superhuman and we're all just muddling through as best we can. I honestly do understand to a degree because (letting out my not-so-inner bitch here) I feel that way about straight DCIS. I just never respond to those posts. Helena hugs are the best so enjoy it 😘

Speaking of Helena; Helena I need to pick your brain on rads. How's it been, side-effects? What are you doing with creams etc?
Member
Posts: 616
Registered: ‎25-11-2016

Re: How's everyone doing.?

[ Edited ]

Helena - I hope your rads went o.k. today - how many left now? I know they finish on my birthday, so a double celebration 😀😀😀

 

Strudel & Emily - what are your treatment plans - I don't seem to be able to keep up with all comments, have you both escaped chemo?

 

 

Community Champion
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Registered: ‎16-11-2016

Re: How's everyone doing.?

Lexxy

 

I went back to work 6 weeks after my op, only doing 3 days and 4 hours a day at the moment, they wont let me do any more until I am finished my rads, which is next Thursday Smiley Happy 

 

It does help I think to keep your mind off things, if you can do it but it very much depends on the type of job that you do I suppose if it enables you to, I work pretty much on my own and have no real timescales for my work, it is just on-going.

 

It is amazing how your perspective on life and what is important changes isnt it.

 

Helena xxx

Community Champion
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Re: How's everyone doing.?

zena

 

You go girl, you can do it coz if nothing else you have your special club behind you xxxxx