Don't know what's happening - any advice for me please?

Alison, I really don’t know where the “strength” comes from - or even if it is strength. It’s just the human will to survive, whatever it takes - plain bluddddy-minded obstinacy, I suppose. You’re still in the early stages at the moment, and it does actually get better - that bewildering feeling that you just stepped through a looking-glass into another world will gradually stabilise, you will get to know this new language none of us ever wanted to learn, you will find out your own individual diagnosis, your treatment plan.

When I started out, in January, I was in shock. For a long time I felt as if there were two of me - the healthy, in-control Sue I’d always known, and this unfamiliar little wraith, pale and pathetic, terrified she was going to die before she’d finished her new library book. It was probably not until I started on my chemo two weeks ago that I actually began to feel the two were re-integrating into a new “Sue” - it was the feeling that I was really fighting back, even though it was making me feel sick. I still get bouts of paranoia, when every twinge feels like the beginning of the end, but I’m gradually beginning to cut it down to size, pummel it into some kind of manageable shape so it no longer rules me.

One thing we can all tell you on here is that your feelings are your feelings, and you are completely entitled to feel however you like - miserable, angry, resentful… You need to take time out for yourself, do things you enjoy, keep hold of YOURSELF (my thing is watching DVDs on my little mini-player, especially musicals - just bought Chicago!) Don’t feel you have to be strong - “brave” - we all cringe at that term. Don’t struggle to find your strength - there’s enough of it there inside you for what you’ll need.

Hi Alison

Good to hear from you but sorry you are having a rough time. Believe me, I’ve been there. I think the hard thing about family and friends is that ,try as they might, they just haven’t been there. That is why this site is so great. Everyone on here DOES know how it feels.In a way that is comforting, I think. It is almost like a form of counselling,a sanctuary maybe?

I honestly, truly believe that you will feel better once you know what is going on. My lowest times were during the ‘unknown period’. I kept imagining all sorts as there is such a wide parameter of results varying from best case to worst case scenario.Try not to second guess things and focus on your next appointment if you can. In the meantime,don’t push yourself too hard, or expect too much of yourself. This is one time in your life you need to give yourself time. Have you got a date for your next step?

I’m ok really. Just a bit sore and the wound is all the colours of the rainbow!! Still ,so far not so bad really.

Keep posting, we’ll all get through this together!!

Love Freddie xxxxxxxxxxxxxx

Hi Alison,
Have to echo Susanne and freddie, its all such a shock and hard to come to terms with, but it is good to chat to friends on here who do know how you feel, a very selective club!
Feeelings go all over the place but somehow we do carry on!
Keep posting it helps!
love Debs xxxx

Hi Alison, hmm not sure where the inner strength comes from either,but time passes and you just get through it day by day,seems to go on forever but I look back at the time since my diagnosis in Jan and where the hell has this year gone!

For me it was so much better when I knew what I was dealing with and only look ahead to the next stage,no point in wondering what ifs untill you know what path you will be on.My worry is I haven’t had a huge meltdown moment and am aware that this can kick in a year or so after or after treatment finishes,but for the mo I’m busy having rads and even more busy in my greenhouse and garden. I find that no-one understands me, however well meaning ,as much as the women on here who have been through this too, so keep chatting and good luck.

Sandra x

Alison - completely agree with everyone, the early days are a bit of a void really and time passes quick one minute and drags the next when we’re waiting again…look after yourself and give yourself time…mary x

Alison
Can’t really add anything - everyone has nailed it, but just wanted to say, thinking about you.

This is a hard time for you, I can remember looking at myself in the mirror, during that uncertain time, and thinking I looked a different person, older, tired, stressed, somehow, - my eyes had changed? I know that sounds a bit mad, but I could see that same look in everyone at the breast clinic - especially on the recall / results days.

When I had my op, I had to go over to the clinic to have a guidewire inserted, along with 3 others from the ward. We were the most relaxed there! - despite the fact we were all due in theatre within a few hours. We actually sat in the waiting room. chatting - whilst the others sat quietly, strained, tense. The difference? We knew our results, and things were moving forwards.

There are still ups and downs - and I know I have had a much easier time than so many others, but, you will be OK, Alison, and we’re here for you,

Lizzie XX

Lizzie, Mary, Sandra, Debs, Freddie and Susanne…I cannot stress how much all your wonderful messages are helping me! You have all made some very good points (a lot of which I had previously not thought of) and are talking a lot of sense (not something I have in large amounts at the moment!), and I would like you each to know that every single message has helped me enormously.

I know that logically you’re all right and I will feel better once I know what’s happening. Tonight I have even started (for the first time) imagining knowing the score and anticipating feeling - this might sound odd - but a sense of relief.

I am meant to be going back to the hosp on Thurs for results, but have had no letter confirming this plus as I only had the latest biopsies last Thursday, I don’t want to get all keyed up only to get there and find out they haven’t got the results…so I think I will ring tomorrow and check it is all still on.

I have a cyst on the most dodgy side which keeps filling up with fluid (they drained it at the hosp on Thurs) but it is causing discomfort. I asked about it, and they don’t know if it is connected or co-incidental.

I’m sure I will get better soon re talking to/seeing people! I spent the bank holiday weekend bunkered down at home. I did have lots of things to keep me busy but as I have felt better today going to work, perhaps this is not the best approach! I am meant to be going to my best friend’s 40th Birthday party on Saturday but am totally not in the mood plus I cannot see past Thursday at this point.

Even typing this to you all has made me feel better. Thank you for being there. I hope you’re all as well as can be. (When I am a bit more familiar with this whole topic I would love to help new people on the forum like you guys are helping me…at the moment I feel as if all I do here is take support and not give it.)

Alison
XXX

Ahh Alison it’s nice to be nice…something that is a bit under-rated nowadays I guess but I’m glad that it is helping you. I found being on these forums especially at the start a huge support to me as I knew hee haw about cancer, just silly things helped me ,like what to take to hosp ,as apart from having my girls I’d never had an op that involved being knocked out. I just feel if I can pass on anything that might be of help or be a reassurance then it’s great that it helps you but it makes me feel good too so a win - win situation. It just helps to know that you are not alone and that there I have always found someone on here who really understands what it’s all about.Take care and keep chatting.

Sandra x

ohhh shucks…no, honestly I think we all find the forum such a help and feel like we know each other like good friends, its weird isn’t it?? And believe me Alison, you’ll find you can help others just by talking and listening…is it this thurs as in tomorrow you think for results? Let us know when you’ve phoned and we can home in with the positive vibes for you - mind you I might be busy being poisoned tomorrow - start first tax chemo tomorrow and son (10) is in for day op for circumcision, he’s never had a general anaesthetic so I’m dreading it too…keeps me out of mischief I 'spose for a while…mary x

Hello Everyone, hope you’re all ok today.

Mary, how are you? Is ‘tax chemo’ chemo + tamoxifen?? (Please excuse my ignorance!) Hope you are not feeling too bad, and that your son got through his ordeal alright today.

Freddie, how are you feeling? Has your virus gone and how is your bruising?

Well, I was at the hosp today, and it is not straight-forward!!! The second core biopsy results detected no cancer, but did diagnose a thing called ‘Radial Scar’ which, I was told, is a condition that is usually, but not always, benign, but a) is usually found in people older than myself (I am 40) and b) does not normally make itself known as a lump (which I have). So, they are concerned about the Radial Scar on its own, but also worried I have Radial Scar + BC. So…the next stage is an ‘Excision Biopsy’ - subject to confirmation after my consultant, other consultants + other people such as radiologists discuss me (again!) at their multi-disciplinary meeting on Monday - but it is pencilled in for Monday 18 May.

Love, hugs and positive vibes to you all…

Alison
XXX

Alison, sorry you didn’t get an answer today and you have more waiting to go through! The waiting is the tough bit isn’t it. take care love debs xxxx

Oh, poor you, Alison - this BC malarkey is a lot more complicated than any of us ever thought. And the constant waiting for results and more tests and more results is a real strain on the brain. Hope you find out soon what’s going on - and it turns out to be good news.

Hi Alison

Sorry to hear that you are still waiting for a clearer picture.I know a little bit as to how you feel. When I kept going back and getting ‘inconclusive results’ it was sooooooooo frustrating. It seems that this BC business is never clear cut.

My DCIS puzzled them too, as normally that doesn’t present as a lump either so I suppose there’s always exceptions to the rule. At least there can be no doubt after the excisional biopsy- that will be sure to tell you one way or the other. On the plus side, you still have the possibility of everything still being benign!! Fingers crossed for the best results possible!

I’m back in the 20th May (2 days after your next step) to see if they’ve got the ‘clear margins’. It seems like ages away. Mind you because of the gap in time I’ve actually been able to forget about it all and feel ‘normal’ again.

Great to hear from you,

Love Freddie xxxxxxxxxxxxxxxxxx

Alison - so sorry it means more waiting…bugger…nothing seems to be easy or steady with this lot…the tax chemo is one medicine - taxotere or docetaxel and is the t bit of the FEC-T regime so I had 3 x FEC (fluorouracil, epirubicin & cyclophosphamide) and then 3 Taxotere…all good fun!! Freddie - hope you’re doing ok & debs & susanne!! mary x

Fine thanks mary, as you are now the chemo expert i will coming to you for tips when I start mine! love Debs xxxx

Hi all
Alison, sorry you still don’t know definately yet, but as Freddie says, could still be benign, hang on in there!

Mary, glad your little one is OK, and you’re getting through the chemo, take care.

Debs, Freddie, still taking it steady, I hope? - healing OK?

Have a good weekend,
Lizzie XX

Hi Everyone,

Thanks for all your messages.

Sorry Mary, I think I have demonstrated how spectacularly ignorant (if this were in any doubt!) I am about BC!! All the medication sounds so complicated/so much to get your head around. I hope you’re doing ok and your son too…

Freddie, I’ll think of you on the 20th and am keeping everything crossed for you.

I was in Boots yesterday looking at false eyelashes in case I end up having chemo, and just thought I would mention that there is a very good article in the Telegraph today (in the Weekend supplement) about them. Apparently, they are very ‘in’ again…

Hope you’re all ok.

Alison
X

Don’t know about eyelashes, but I just got a free Brazilian, if you know what I mean (TMI?)

Think how much money you have saved Susanne!

Has to be some compensation!