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!

Hi lozwil. No I don't mind you asking. Main symptoms - extreme weight loss, night sweats, cough, very swollen and sore glands in neck, tiredness, breathlessness. I thought I just had a bad cold and attributed the rest to the kids and breastfeeding.
Spurred on by family and friends worried about me I went to see the GP and had a diagnosis a week later. There are so many different types of lymphomas though and different ones give different symptoms - I'm pretty much textbook for the exact type I have.
Do try not to worry; easier said than done I know. The lymphoma association website is good for information by the way.

I've been doing the 5:2 and have lost a stone. It has taken me a long time but I know I have a bit of a chocolate habit in between. I might look at the fasting thing Boobz. Sounds interesting.

Am having keyhole surgery so hopefully two/three weeks off work will be all. I'll need to be careful what I eat so I don't put all the weight back on!

Sloshy is exactly the right word and yes it has that effect on me too.
Just made lentil soup and drank some. Have managed a pint of squash. At least I am now allowed to lose weight, which I desperately need to do, as the mask is no longer needed.

Thanks for encouragement.

Speedy - I had my oopherectomy last year with keyhole on the 17th December and went back to work on the 5th January. First few days were sorer than I expected though!

I had an oopherectomy last Easter, it was really quick and simple. The little wounds were tiny and I healed in a couple of weeks. I did loose my tummy button though! I only have a dip there now.

Thanks Wee and Sleepy.
How long before the menopause kicks in? I've been recommended a chillow. Am presuming once it's done no more periods but do you bleed after the op at all?
They have to go in through my belly button as I've had an umbilical hernia before.

sandwich- glad you have help with the children. That is a very tiring age and can wipe you out. At least mine were able to do lots for themselves.

Hayelp- nice to hear from you. I remember difficultpickle and have thought about her but haven't seen her on here for a long time.

Bled a tiny bit but not much. For me, menopause kicked in immediately. It's unpleasant, no denying it. I'm on a drug called megestrol which isn't hrt but helps with the flushes. My onc also gave me a vaginal pessary as I was finding I was very dry (tmi, I know). She is also going to change me from tamoxifen to a similar drug as she says it has better results for younger (I'm 38), post menopausal women.

Morning all. In bed feeling blue. I miss the girl I used to be and feel like I'm back at the beginning of this damn 'journey' all over again. Met surgeon on Friday night and essentially it is up to me as to what procedure I have: mastectomy or lumpectomy. Need lymph glands removed too so it's full on either way. Head spinning. Plus paclitaxel side effects hitting me nicely, legs are killing me. Sorry, it's really all me, me, me in the post 😌

Good morning everyone.

happygoluckylady are you leaning towards one or the other, or completely unsure? Hopefully others who have had either surgery will be along shortly with their experiences :) hopefully you have a relaxing day ahead with your feet up!

Thanks Wee. Am so looking forward to the menopause but I guess it's better in the long run!

Happy- sorry you feel rubbish this morning. The aches are really not fun have you got any good drugs for that? I had a double mastectomy and it is full on but ok. Before I knew I would definitely have to have that because of BRAC gene I told them I wanted them off anyway. I didn't have to have lymph nodes out but there are lots of other people on here who have and can give good advice.

Happy I'm sorry you're feeling down. I had a lumpectomy but did have node clearance and recovery was fine. Having the drains is the worst bit but after that it's ok. I miss the girl I used to be too so I can sympathise with you on that. New normal is a phrase we use sometimes to describe it

Morning to everyone, lazy start here with a lie in and a bacon sandwich

Hi all,

We have been bobbing on and off of these threads for some time and we wanted to head on address the nanny situation to avoid any further speculation.

We have been contacted by several of you over a fair period of time about some posts here and on another site that raised some concerns. We looked into the case and felt that there were some large discrepancies in posting and we mailed nanny to ask her about them.

Nanny has been in touch and stands by all of her posting. We do feel that the trust has gone and there is no hope of recovering a supportive relationship on Mumsnet as there is so much suspicion. We can never be 100% sure if anyone is who they claim to be on the internet and we will tend to lean towards giving the benefit of the doubt, however, when folks are getting very upset, some of the posts and posting history do not add up and the feel of a whole thread has changed due to one poster, we will take action.

We do wish nanny all the very best, it is always a last resort to remove someone from Mumsnet but we felt we had no other choice in this case.

Thank you Mumsnet for clearing that up.

Happy, I am 12 days on from my risk reducing double mastectomy and implant reconstruction and can echo the previous poster about the drains being the worst bit. When they were removed two days ago I felt quite a bit better, psychologically. The pain following surgery has not been as bad as I thought it would be, manageable with medication though tbh finding it hard to get to sleep at night so far!
Jealous of the bacon sandwich, mum2twoandnomote!

Sorry, should be mumto2andnomore.

Thanks for letting us know RebeccaMumsnet. I think the correct decision has been made.

After the recent discussion I was curious enough to look back at some of the archived threads and have a horrible suspicion nanny may have posted on these threads under more than one guise. However, I think we need to move on now and it is always best to assume posters are genuine, and such a shame that anyone would feel the need to be anything other than truthful on a support thread like this one.

Thank you very much Rebecca and for you and all the Mumsnet HQ team.

I'm sure there will be lots of discussion over the next few days, but I hope that the thread will soon be able to get back to normal and carry on providing support to all those who need it.

Any newbies, please do not be put off by this. To my knowledge, it is the first incident of this kind in many years of Tamoxigang thread :)

Thanks Rebecca
I think we should all remember that treatments can vary even for BC. I know in RL that some people (including those who have recently had BC) don't understand why I am still having treatment 2.5 years on and haven't had a MS or rads. The reason is because the concern is not my breast but that the naughty breast cancer cells have got into my bones (secondary breast cancer but not bone cancer).
So the only way wyou might judge would be in inconsistent postings - or as here if the same poster is posting different stuff on different forums. But perhaps it is often best not to judge but just to ignore posters when you are not convinced of them?
As for Difficultpickle I recall she was being treated for a blood cancer but she hasn't posted for two years, at least under that name, and she used to post on the education threads quite a lot.

Thank you Rebecca and from me too, and to you Leslie I do hope we can draw a line under this. Suffice to say that behind the scenes there was only care and integrity, nobody took action without a lot of work having gone into investigating the posting history and finding a substantial number of contradictory postings, the other site having moderators with more specialist knowledge that would have spotted the unlikely nature of the Mumsnet postings, and only after suspicions had been nursed by many people over a very long period, some of whom were dealing in real life with terminal illness and felt very angry that someone would exploit that situation. It is very sad, there are no winners here. Nanny clearly needs support and help and I hope she now seeks it in the right way in the right places.

And this is as Leslie says just one incidence and hopefully an isolated one. Many of us have met in real life after bearing our souls and some orange men on the thread and some very deep friendships have formed and I can swear to this thread being a source of support from some amazing, caring and funny women who have faced the challenges presented by this bugger Cancer. So I do hope the thread will move on in that spirit.

Many thanks, lovely Rebecca from the Mumsnet crew.

Hear hear ron.
Let's all move on from this and hope that this thread continues its wonderful support for anyone facing any aspect of this filthy disease.
to all who helped resolve the situation.

Sad situation but I'm glad that it has been resolved in the right way. Like Leslie said this is the first time this has happened in the thread which is normally a very safe, honest and supportive place so I hope all of the new people are not too upset by this.

fresta was the poster called reallyreallyworried? That is the same poster, she name changed a while back. Many of the most bizarre posts (machinery falling apart, scan results mix-up, brain bleed) were posted as reallyreallyworried. I certainly agree that we should always assume posters are genuine until strong evidence to the contrary.

I imagine this is probably quite a shock for newer posters who have only "known" nanny recently. Unfortunately many of us have had concerns for a long time now. I am not entirely sure how much we are allowed to say on the matter, but I do feel people ought to know what is going on. It is probably OK to discuss it now that decisive action has been taken.

Certainly when she first joined the thread, and for months afterwards, nanny received the same support as any other poster. But gradually her posts became more and more unrealistic. If you are interested, you can always use Advanced search to read past posts.

There have indeed been some major inconsistencies between posts here and on another site. If nanny stands by every post on this site then she has told some horrific lies elsewhere.

What Lily says is very true. There are huge variations in cancer treatments, so that alone should not be a cause for suspicion. (Though if you have suspected mets, it is not normal to wait months for testing. No one should accept that.)

This is all a bit much for a Sunday lunchtime really! I hope that everyone is having a relaxing day

Also just wanted to say that no one else is under any suspicion of not being genuine

Yes Lesley, I worked that one out, but there was at least one other poster who I suspect was also nanny with a different user name and a different story, I don't want to name them though just in case I am wrong and offend someone.

It's all very sad. My trolldar is non-existent so I had no suspicions at all. I would echo that this thread is hugely supportive, so please no one be put off posting!