Tamoxigang cancer support thread 54: A new thread for a new year!

[WhatWouldLeslieKnopeDo]

Welcome one and all to the wonderful Tamoxigang thread! May 2016 bring us all health and happiness

If you are new here, then an extra big welcome to the club nobody wants to join. The thread is for people with any type of cancer, and also those who are waiting for results. So don't be shy. We are more than happy to hold your hand while you are waiting for a diagnosis, and we will be here to celebrate or commiserate, whatever your news

No question is too big or too small, someone will usually have an answer, or an idea of where you might find one. You can laugh, cry, shout, swear, and, of course, eat chocolate it is a bit of a safe haven from the mad world of cancer, the head-tilting and talk of bravery, and all the nonsense that comes with this diagnosis :)

So feel free to introduce yourself. And oldies, feel free to re-introduce yourself if you'd like.

We only have one rule here and that is no Googling!

weebarra I think it's better that way round than to be suspicious of everyone :)

Thank you mumsnet for all the work in getting this resolved.

I sometimes lurk but rarely post these days.

I joined the tamoxigang back in May 2013 and this thread was a lifeline when I needed it most. I've made some very special friends via this thread. :) Hopefully once the dust settles it can return to the wonderfully supportive thread I joined.

to all the newer members, sorry you are here but you will get great support from this thread. Please don't let recent shenanigans put you off.

Hello all. To be very honest, I do feel uncomfortable about this whole saga. I do not want to judge anybody and yes
I have read what has been posted. I do not blame anybody nor do I feel inclined to accuse anybody here of anything. This thread feels different for some reason.
I will not lie, but for the first time since joining this thread I did not feel like posting. It is not that I have lost trust. It is more like feeling disappointed.
Maybe I need some time. Dunno.
Please don't anybody be offended or feel bad. I just wanted to get this out in case I do not show up in the coming days. I may wake up tomorrow feeling better !
Power to you all.

Very normal for it to feel unsettling when something like this happens. Especially when people have spent a long time supporting someone through what they were led to believe was Stage 4 cancer.

I'm another who has been blessed with this thread for a very long time. And have gone on to meet and share time with the most amazing and wonderful folk. Some no longer with us, alas. I cherish their memories.

Royal I know what you mean, this is not something you expect on a cancer support thread ! Discussion about Nanny has been going on for a long time but it must be extra hard for people who have only just heard about it. It will all die down though and go back to being the supportive place it was, we will make sure of it

royal completely understand. It's not a very pleasant situation all round. I hope you will come back when you are ready

As someone who was defending nanny last week I have read today's news with shock. Like royal, I am feeling uncomfortable about what has happened and particularly how. I obviously haven't been taking enough notice, or been around long enough at 18 months to have picked up on any clues.

I would rather this whole thing had been dealt with behind the scenes completely. There has obviously been some wide ranging discussion going on for some time which many of us were completely ignorant of. As a result it now feels as if this is a two tier thread. Some of last weeks posts make very uncomfortable reading and I feel rather upset and now stupid about being mentioned directly in one.

I've had wonderful support here and I hope I've helped a few others along the way but I feel rather, well very, sad about what's happened.

Hi everyone, I am from another forum that Sal has been posting on, I have been speaking to Leslie to about this situation on Facebook and just want you all to know that we have been looking back on our threads too. We have different stories but similar on our forum and even the private messages we have been sent by Nanny don't add up. It is sad to think we have supported someone who may or may not be ill. She was only stage 2 on our thread but if she is genuine she clearly needs more help than any of us can give and yes to reiterate about secondaries - none of my ladies in my group have had to wait more than a day to get an appointment - in fact at my hospital they have a drop in service so you can go at any time.
I met Nanny or Sal as she is called on our thread back in Nov 2013. I was dx with stage 2 BC and have now been clear for 2.5 years. I have no horror stories, my treatment was excellent & i've had the odd scare now and again which have been nothing but have been dealt with immediatey.
I have a facebook group, i tried to get Sal to join but she wouldn't, we trieed to meet up with her in London but she was always busy and we have tried calling her mobile but she doesn't answer.
It has unsettled our group too but we are all open now on facebook, our group is private so noone can see us on our main profiles and alot of us meet up regularly in the regions we live as we are all over the country - we initially met up on Breast Cancer Care.
We will now put this behind us too, we don't know if she has been removed from our forum or not but we have now taken to facevook as our place to support each other.
Anyway, just wanted to say hi, i hope you are all doing ok
Love Sam xxx

I'm shocked. Had no idea.

Waving at alex2008! Thanks for stopping by :) I am glad you all gave Facebook as an alternative.

I understand that completely mrsrhod and I agree. I would also have preferred all discussion to have taken place off-thread. I am genuinely sorry for the role I have played in making you feel that way

Know what you mean and how you feel mrs rhod!

Hi Alex2008, and welcome to here . Sorry that your board had been subjected to the mysteries also.

Alex 2008 thank you so much for coming over and explaining, I'm sorry if your group has been upset by this too and glad to hear that you are doing well

I'm sorry people are upset it's a horrid situation, I know I just presume everyone on the net is genuine it's sad when you realise this is not the case.

Well to be honest Leslie I did think you'd had a personality transplant as I just couldn't understand why you were saying such things, you've always been ultra supportive. I've been worrying about this since Friday evening and rons post to me so I'm pleased to see it resolved, but it's left me rather gloomy.

Dear all,

I haven't posted on this thread for a couple of years now, but I was one of the original tamoxigang when we started out. For me it was a wonderful place of support and friendship, I have met some wonderful people and made some dear and much loved lifelong friends from a little thread on MN started by MAS for those of us dealing with cancer.

I have been saddened for all of you by the recent upset on this thread.

I don't recognise many names here now, but I do recognise the friendship and support you are all sharing. I have gathered a little of what has been happening and it is a credit to you ladies that your support and shared experiences continued even when perhaps some of you had doubts. My approach in life has always been to rather be taken in by someone who is not quite what they seem than turn away someone needing help. Sometimes a person who is not quite as they appear needs a different kind of help, but this thread is not the place for it.

I hope no one was distressed or worried by any unusual stories of hospital management. In my own personal experience (and I have been involved in a lot of cancer groups) I have never met anyone who after diagnosis was not seen swiftly as a priority if there were any further concerns relating to their illness.

I don't have enough knowledge of all the ins and outs to really comment, all I will say is that though I am no longer present on the thread I send my love and good wishes to all of you going through this bastard disease, women are strong and kind and loving and wonderful, we help each other and we give of ourselves - I'm proud to have been a part of this thread albeit a while ago, and I'm proud of all of you for standing beside each other and creating your loving, friendship circle of kindness and strength.

Love and peace brilliant tamoxigangers, some of us may have moved on but you will all always be in our thoughts and hearts. xxxxx

Ok my hair really is a state. Are there any hairdressers/stylish people on here who know how long the new hair has to be post chemo before it is long enough to do a pixie crop? And what pixie crop should I be asking for? Could I manage this cut with my current length of new growth?

Hi to everyone. I'm another person who hasn't posted for a while (my blasted ancient iPad doesn't let me post to threads with more than about 100 posts so have logged onto DS'S for this)

I do read all the posts tho. I was diagnosed in Sept 13, had chemo, a bilateral mastectomy with no reconstruction and rad. I finished treatment July 14 and have been getting back to (new) normal since.

I just wanted to reiterate what everyone has said about these threads and the fantastic people on them. They were a lifeline for me during my darkess hours and, and I don't want to embarrass you, but Amberlight's calm words of sense saved my sanity on a number of occasions.

I remember clearly the concern about reallyreallyworrieds posts and the anxiety they caused many of us going through treatment at the same time. I felt so helpless with everything that was happening to me and anyone's stories that somehow lessened my confidence in the medical profession that was saving my life, really impacted on me.

Boobz you could get a nice short style now I reckon. It just needs evening up and a good hairdresser should be able to suggest a style. I felt so much better once I had my first cut

Whoops....

I Believe that Nanny/Really/ anyone who is less than honest on threads like these have serious issues going on for them that do need support and help and I hope they are genuinely not aware of the stress and anxiety that they can cause poorly people when they are at their most vulnerable.

I also had concerns and a sense of déjà vue when reading Nannys posts and I'm glad things seem to have been clarified.

Love and hugs and waves to everyone, new and old, and I'm hoping to inherit a better iPad soon so I can participate more.

Perhaps MrsRhod the answer is to always give everyone on the thread the benefit of the doubt as indeed Nanny was for a long time. sleepy obviously regretted her deleted post which did force things out in the open - she actually didn't know about the discussions with Mumsnet and BCC and that it would have hopefully been quietly resolved behind the scenes - but she has secondary Breast Cancer, a young family and is obviously having a very anxious time facing further treatment and was upset after reaching her own conclusions and and in spite of that was reaching out to Nanny to offer an attempt at understanding and support. Regardless of the extent of Nannys deception not being known by everyone on the thread Sleepy especially deserved trust too.

There is no two tiers, just a bunch of women who have faced the horrible experience of Cancer, many of those who came to the thread before or at the same time as Nanny still post here with the benefit of their experience especially of the "fear" or as grey lady christened it the "pebble of doom" that sits in the pit of all our stomachs, and offer each other empathy and understanding. It is a shame this business has ended up being public and devisive and I apologise unreservedly if I have contributed to that but this whole business has caused a lot of upset over a long period, part of the reason some have not posted on the thread for a while, and all anyone wanted to do was to end that with as little damage as possible to those who are in a vulnerable time of their lives (including Nanny ) and move on and hopefully focus on cherishing the support that has always been available here. So as I said before I do hope we can draw a line and focus on supporting each other.

Boobz, might be worth asking your BC Nurse if they can recommend a local hairdresser with experience of post-chemo hair. There was a hairdressers leaflet in the waiting room of our local Hospital saying they has experience in this area.

Boobz, I think you could go go for a lovely short cut and it would really suit you short as you look petite.

I think in light of what has been revealed it is a good thing that we can now discuss nanny's deception, even as a newer poster who was unaware until recently of her posting history I still feel deceived as I thought she was very supportive, and even now it is hard to believe that there is no truth in her posts. As for the two tier thing, that seems to come from the fact that discussions have been taking place which some only posters have been privy to, and it feels as if there is a lot more known about nanny which is not being made public on this forum, which of course this is understandable.

Good post ron, I am glad everything is out in the open now anyway. I'm sad to think that people have been more reticent about posting. Tbh, I hadn't posted for ages either, since my treatment is pretty much done, but if the thread comes up on active I always check it as I remember getting so much support when I needed it. I'll no doubt be back when I eventually get round to recon!

I've read through all my posts and I genuinely can't work out which ones were that awful, but of course I'm reading them from my perspective, knowing what I meant.

I really have done my best to handle this situation sensitively and I am mortified that I have failed so spectacularly

I think my earlier attempt at explanation may have made things worse. I wanted people to know that MNHQ weren't acting rashly, but instead I've made it seem there's a big conspiracy.

It has knot been under investigation for a few weeks. Just before Christmas we found the other thread and found the sections which contradicted her MN posts. After a lot of soul-searching I reported this to MNHQ, as did some other posters. It was not an easy decision, or a malicious one. I treasure this thread and I wanted to protect it. I knew that whatever happened, there would be a lot of upset. But I felt that overall it would be better for the truth to come out.

I could not have posted about this publicly on the thread because it would have broken the talk guidelines and been deleted, as well as causing upset. I also do not think that many people would have believed me over nanny. So I decided the best thing to do would be to try and post as normal until MNHQ responded.

I had hoped that there would be no confrontation with nanny on the thread, so I tried to ignore all of it. I felt sorry for Sleepy though, who had picked up on the confrontation earlier in the thread and was trying to be supportive of nanny. I'm not sure I did Sleepy any favours wading in on her behalf

It's all a bit of a mess, and I acknowledge that much of this is my fault. I wish I had been able to handle this better and to avoid upsetting anyone

Sorry, this has all been rather me me me. I hope it helps explain what's happened a bit better.

I really hope that once the dust has settled the thread will return to normal, and that people will continue to post here for support. I understand if posters need to take some time away from the thread, but I really hope you will return.

Newbies, please keep posting and ignore all of this. I promise this is a very unusual situation! I hope everyone is doing OK

I am very relieved that this whole nanny business is sorted - and there was certainly no deliberate two tier thing going on, fresta is quite right. Of course everyone should be given the benefit of doubt but nanny's stories were inconsistent and fanciful over quite a long period and if several people have gut feelings that something's not quite right then the responsible thing to do is to investigate as tactfully and carefully as possible - obviously she needs help and I hope she gets it.