Tamoxigang thread 50 with summer sun, sangria and maybe even some sand

[foofooyeah]

Welcome to thread 50 .... Yes FIFTY.
Lots of us are rising 50 so rather apt!

I'm up early and ready for my last rads session, it appears to have got a bit heated overnight.

really, like you I will today be at the end of active treatment, apart from tamoxifen and will enter a monitoring stage. That may be all I ever need, but if course that could change anytime. I absolutely understand your need to grasp the good news you've had and shout it from the roof tops. At the moment you are ok and long may it stay like that. Please keep posting.

I also understand the need for accuracy, but I was a little surprised at the tone of some posts. Maybe I am also being over sensitive. With Amber's statistics yesterday it's easy to convince yourself that a long life could be possible still. I hope so. My surgeon said I'm going to be ok, yes that's open to interpretation, but for now I'm hoping he wasn't throwing words around unwisely. We all need a bit of hope.

Morning trice, bit misty here today! Hope you're well.

Trice - I made a blouse with a ruffle earlier this year and am very proud of it. I also made 'floaty' top in a chiffon type fabric that has a tie down the front which is good for disgusing things .
The fabric I have waiting are 2 lots of cotton to make tea dresses - thought I might put on Peter Pan collars to keep them up to date. Various cottons for sleevless tops and some really nice wool to make skirts for work. I'm a bit like you though - have to really rein myself in as I am drawn to beautiful fabirc that I wouldn't necesarily wear.

(RahRahRasputin - thank for replying - I have always had the same brand of tamoxifen so not sure if getting an alternaitve is an option. Also this all started with the Tax so pre-dates the tamoxifen - my consultant said I may need to stop taking it for 6 weeks to try to find out if it is the tamoxifen or just me!! For now I'm trying to manage it - fortunately the worst effects are in the morning and evening - not so bad when I'm at work so it is manageable (but unpleasant).

A long life is possible for everyone. But, as wise friends note above, 'all clear' in cancer terms means the end of active treatment and teams signing a person off from active monitoring. With cancer, we don't get a medically-defined cure. The best one gets is "No Evidence of Disease" (NED). It's why it remains a disability for life, by law.

90% go on to live every bit as long as other people, now, it's true. With Stage 4, that tends to drop to a much lower number.

Many breast cancer patients have No Evidence of Disease throughout those decades. Some live with cancer visible in their bodies somewhere for decades. It doesn't necessarily kill. Sometimes it hangs around just being a nuisance and needing monitoring and low-key treatment/more intensive treatment to keep it in check. So, it's very true that cancer can be zapped and surgeried and poisoned into being invisible. But it's never described as a cure or completely clear, by teams.

Really has been extraordinarily fortunate, having had ( I believe) a complete cure without treatment or physio from a brain bleed earlier in the year, which causing weakness down one side and numbness etc (in the middle of chemo, but the teams let Really continue with chemo for some reason I don't understand). And now no further chemo or radiotherapy treatment needed for cancer in the liver, after major surgery. This is all very good indeed. But I've never come across this before. And whilst hope is always a good thing to have, so is an understanding of how very very unusual that is. Otherwise my concern is that people reading from a distance may make choices based on the assumption that they too will have that outcome.

People like me spend a long time helping do a bit of research to assist people, and it is a huge huge worry when something as serious and life-threatening as a brain bleed during chemo is put on here. I spent hours researching it in order to try to be on hand to provide good info and good background stuff - so people can talk to teams in an informed way and take the team's best advice. Because I'm autistic, data is what I am good at. Social tone is what I'm not good at. And when I come across something totally puzzling, I say so , because I'm honest and factual. Nothing to do with hating anyone or wishing them dead, at all.

Just dropping by to see how everyone is doing.

trice and lily - so pleased to hear you are both doing so well :)

really I'm delighted to hear your treatment has been so successful and you are now in remission, but having a go at Amber is totally out of order. I have never, in my 14 months on this thread, seen Amber posting anything other than lots of sensible, researched, thoughtful, sensitive advice and support.

hello to everyone else
I had my six months post rads appointment with the surgeon this week, in and out in 5 minutes, doesn't want to see me for another six months, those are the type of appointments I like!!

Blimey, it's all a bit heated on here! Really, I can't quite see why you're so upset and defensive. Amber's last post was saying how fortunate you've been. Isn't that a good thing?! I honestly can't see anything snide or putting you down in what she's said. Great that you've had good scans and your liver is looking clear of cancer. Excellent news!

I agree with Betsyboop though, so just wanted to post as so many of us have been helped by the lovely Amber. She's not passing judgement and her words of wisdom are always well researched and so, so useful. Honest and factual is a good description I reckon. Amber xxx

Waving to all - haven't been on here for ages, but I hope everyone's as well as they can be. This place honestly got me through my treatment 4 years ago. It's bigger than any of us though and there will always be those of us a bit further on keeping a watchful eye and gently pointing out when things posted might be misleading. Treatment's confusing, but we owe it to the lurkers, internet searchers and just all of us to make sure the info on here's as accurate as it can be. I was corrected a few times when I got terms wrong/ posted things that weren't quite right, but it was just patient explaining/ de-mystifying from those who'd trod before me, which helped me/ hopefully helped anyone else with similar who was reading. Cancer's bloody awful, but knowledge is strength, so it has to be right on here so all can trust it. Let's not wreck that for all who sadly have to follow us. I hope that doesn't sound preachy, but this thread matters so much I think.

God I do go on! Am wishing you all sun.

Absolutely smee, this thread is in its 50th 1000 posts, a reflection of how many of us this bugger affects, but just because it is common does not lessen the trauma of diagnosis and treatment. The thread has provided so much support because it offers hope and care, but also understanding of the reality we have to come to terms with. If anyone cares to go through the 50000 posts they will find much care for others and much good advice, much of it from Mas , who was there at the start, and Amber, and also evidence that neither of them has a snide or unkind bone in their body.

We all deal with it in our own way, denial, anger, sadness, depression etc are all normal reactions. Really I am sure you are dealing with your illness in your own way and as for all of us writing it down is a way of working it through, rather than a detailed information dump from the reality of your experience. However you have made some people who live with the reality of a Stage 4 diagnosis, and indeed those of us who live with the grey lady's "pebble of doom" after Stage a 2 or 3 diagnosis, feel that the way you are expressing your experience does not show respect for the reality and what others are going through, and might suggest that reality is rosier than it is to others reading this. Amber if you have any understanding of autism is capable only of honesty, incapable of sociopathic or manipulative behaviour such as snideness, and wants to make sure that there is honesty about the reality to be found here. It is absolutely not personal.

Having said all that I am 13 years on on 3 August from a stage 3 diagnosis and then only being given a 60 % chance of living 5 years. My Consultant still categorises me as "remains in remission" but whole days go by without the paranoia it will return or has returned. Amber's statistics do translate to lives lived.

Trice great to hear about your latest check up xxx

I'm sorry you're upset Really, but I also don't think Amber was making snide comments or doubting you.

As you have yourself said, your journey has been a remarkable one and it is important that those who, like all of us in this awful position, are desperate for information, know the facts, based on proper published research.

I'm sure you would be the last person who would want anyone to make any medical decisions based on just your experience, without having the knowledge of how unique your experience has been and the reality of how it can be different.

I am so grateful to Amber for all the time and effort she takes and have taken huge comfort in some of the information she has provided.

I feel a bit me me me now after all the last posts but today the firmly built walls I've had around me for the last couple of weeks have finally fallen and I'm in pieces. I have cancer, I don't want to get ill...

All this has come about since the encounter with my boss yesterday. Last night I looked at the MacMillan site as suggested and couldn't but head to the chemo page as that is what I'm facing first. It all started to become more real.

So roll onto today and I had my half year performance review with my boss. He asked about my training and I said I had 1 outstanding that I had planned on doing later this year. "So just email HR and let them know and they'll book you on it he says". Does he really think I want to do training any time in the next few months?!

Review over, he asked how the last couple of days had been. Not good I replied. Oh? At which point I started to break down and said that I felt totally unsupported by the company that their inflexibility over sick pay was out of order and that I should be thinking about me and not worrying about paying the bills. "I'm sorry you feel that way....". Anyway he's going to challenge HR again to see what they can do.

I was in no state to work so I'm home now having a good cry. Perhaps I should be grateful to him for helping bring the walls down, they weren't doing me any good

Actually I should say that Really your experience has had an unusually rosy outcome after an unusually scary treatment. Perhaps for the newbies we should do a recap as we used to do from time to time, it helps to see that others have shared particular experiences of Cancer and treatment, all part of making it the new normal....

Diagnosed 3/8/2001 (age 43) Stage 3 with 1.7cm lump, aggression 3, max ER+, 1 lymph node fully involved, second slightly involved. Lumpectomy but margins were not clear, followed by mastectomy (extensive DCIS in breast) with full node clearance. Chemotherapy FAC, treatments delayed and dosages progressively reduced as a result of low whit blood cell counts (neutropenia). Five years of Tamoxifen. Early menopause has left me with bone density issues but otherwise no evidence of disease.

minty it is quite normal to feel in disbelief that you have "Cancer" but remember as our posts are saying the cancer we have experienced is different to the perceptions that you probably hold, the ones that are common in society. The reality is different, each tumour is different, the treatments and our experiences of them are different. To be sure the treatments are gruelling whether surgery, chemo and rads, but they are doable and you will find support and understanding on these threads. The worst part emotionally is the uncertainty and not knowing when your mind can take you to all sorts of scary places including the last pages of the Cancer websites, once you have a diagnosis and treatment plan you can get on with it and adjust to your new reality. But be gentle with yourself, ignore all the positive crap people impose on those of us with Cancer, if you feel scared, sad, angry then it is all normal. If you feel positive and "brave" and "fighting" fine too but most of us resent those labels imposed on us. If you feel you cannot cope for any period of time do not be afraid to go to your GP and get the temporary support of medication but there are lots of coping methods that can also help. I found visualisation really helpful and relaxation through yoga and meditation, most hospitals provide that sort of support. I was also lucky that an informal support group grew up in when three of us with children in the same school were going through treatment together, we developed a black humour about it all which kept us going.

You certainly do not need the work problems, your boss is an arse but I have met a few in my time, do look at the protection you get through the disability legislation and flex it as Amber suggests. My work were arses too, but the act didn't extend to Cancer then but I did extract a lot of money from them in a constructive dismissal case. They may not realise but they are on the back foot.

Above all lots of hugs but lots of us have been there, you get this shit over with surprisingly quickly and get on with the rest of life's shit.......

Thank you shooting that's just what I needed to hear. I've had lots of people telling me how strong I am (I have a 7 yo DD with cystic fibrosis so have had to deal with loads of cap already) but I don't want to be strong, I just want to have a normal healthy life like everyone else
I know I'll get through it though and there will be good days and bad. And I'm still positive despite the tears.

its hard to think of myself as disabled now - I struggle to accept that my DD is but if that opens doors for me then I'll take in on board

I'm currently lying in bed listening to a storm raging outside and rain lashing down the window. Can't beat it!

Good to hear from lots of people who are much further down the line and is something to focus on. Have just had 6 out of 7/possibly 8 chemo and finding it hard going to look past the end of this process. This thread has been a godsend.

for everyone

Just waiting for the side effects to kick in but have just been out for a lovely lunch. Really want ice cream though!

Legislation concerning cancer as a disability:

Equality Act 2010 section.6: Disability
(1) A person (P) has a disability if—
(a) P has a physical or mental impairment, and
(b) the impairment has a substantial and long-term adverse effect on P's ability to carry out normal day-to-day activities.

And: Schedule 1 Para 6:
6 Certain medical conditions
(1) Cancer, HIV infection and multiple sclerosis are each a disability.

Hope that helps Minty!

I have a feeling this is going to be a looooooong post...

Firstly, minty big hugs. It's perfectly OK to be posting about you! I'm sorry your boss still doesn't get it. Have you told him that you cannot book the training right now? You never know, you may be someone who sails through treatment and wants to do the training, but you may also be feeling grim and not wanting any extra strain.

I'm rubbish at knowing what to say when people are down so will just send you best wishes

Also sorry that the Macmillan site worried you I should have mentioned that it is quite detailed. But if you are going to look on the Internet for information then that is the place to go as their information is accurate and relatively up to date, whereas there are all sorts of sites out there sharing out of date or dangerous information, suggesting wacky alternatives to conventional treatment etc. so it is better to just look at trustworthy websites. There are some breast cancer specific ones I think but I don't know them so perhaps someone else can suggest.

Chemo is horrible, but it is doable. We have all got through it one way or another. Many have managed to work part time, some even full time. I was very ill during mine, but the time actually went quite quickly and my overwhelming feeling was of boredom rather than misery.

smee I totally agree. This thread is immensely valuable and is a lifeline to many. It needs to continue that way so that more can benefit. It is both happy and sad that there are so many of us in the Tamoxigang now.

really I will echo pigeon's post about autism, as she has said what I wanted much more succinctly. I don't know much about autism, only what I have learnt from amber and you may know more about it as you work with children.

Someone with autism is highly moral and accurate. They may come across as socially clumsy as they communicate only in facts. They will always be truthful and accurate, without dressing anything up in the way that many of us do. Sometimes that may come across as bluntness, but it will never be deliberately rudeness or snideness.

amber's amazing accuracy and factualness have been of real benefit to many of us on the thread, as she has shared lots of useful and reassuring information. Some people have even been able to suggest new treatments to their teams, thanks to amber's research. You probably remember how much research she did when you had your brain bleed during chemo. I for one am very grateful for all the time and energy that amber has committed to this thread over the years.

Unfortunately, for amber, the same focus on detail and fact means that when something is inaccurate or doesn't make sense, it can cause extreme anxiety, which is perhaps what you have interpreted as doubt or snideness.

Please refrain from making any further personal comments about amber; by all means be as rude to me as you like. Most of us can just shrug these things off, but for people with some types of autism, a personal attack of any kind can cause an "electric shock" in their brain, which causes them actual physical pain. It also makes this thread an unsafe place for amber which means she may not be able to return and share research in future, which would be a great loss for us all.

pigeons that is a good idea, although I'm not sure my info will be of much use to anyone, I will jump on the bandwagon to get things moving

Diagnosed 26th October 2012, aged 21, Stage 3c bowel cancer, grade 2, 4/22 nodes affected. Pan-proctocolectomy with ileoanal pouch anastomosis. 8 cycles of XELOX (capecitabine and oxaliplatin) although technically three of the eight were just XEL. Finished chemo in July 2013. Clear CT in June 2014.

We've just had a massive storm here, lots of thunder and lightning and very heavy rain. Rather refreshing :)

RahRah I want that storm!!!

I've been lurking on this thread all day, not sure I have much to add, except that I also am very grateful to amber and her research, being a person with a badly behaved type!
If the past year has taught me anything (other than BE MINDFUL), it is that as wise Zombie said, there are many different cancers and everyone's experience is different. That doesn't mean we can't support each other!

Me: Grade 3 breast cancer diagnosed in both breasts, October 2013, 8 weeks post-natal, aged 36. Tested +ve for BRCA2 gene. Originally though to be triple -ve but pathology revealed 3/8 for oestrogen.
Neo-adjuvant chemo, 6 FEC, 12 weekly paclitaxel. Bilateral mastectomy with full node clearance, 15 fractions of radiotherapy.
Currently waiting for preventative oophrectomy.

Blimey wee I hadn't realised that you had 6 FEC as well as the 12 paclitaxel - you've been well and truely blasted then!!

and RaaRaa - time has flown by - it's amazing that you had your diagnosis coming up for 2 years ago.

Me: Diagnosed with Grade 2 ER+ (8/8) breast cancer in May 13 - orginally thought to be a 6cm tumour - micronet in 1st Sential Node (so no clearance required) - had 3 x FEC then mastectomy when found that lump was actually 4.6cm and only 1.3cm was IDC (the rest was DSIS). Had the option to finish treatment there but went ahead with 9 x Paclitaxel. Had reconstruciton with implant only in Jan 14.
Now taking Tamoxifen.

Summary of my bc experience:
OCT 2006 dx with stage 2 grade 2 triple negative invasive ductal carcinoma of the breast. 2cm and surrounded by area of dcis.
Later that month (Oct 24th) had wle and lymph node sampling. No nodes infected, clear margins and no evidence of vascular invasion.
Because it was triple negative I had chemo of 4xFEC and 4xtaxotere followed by 15 rads. Treatment finished late May 2007.
Since then I have been lucky to show No Evidence of Disease (our good friend Ned who we hope will walk with us always).
I was 62 at the beginning and am now 70 years old so older than most of you; unusually do for tnbc.
I do not believe in 'all clear' but I do believe in Ned and hope to continue in that happy state for many more years.
My ambition is to live long enough for my youngest grandchild to keep his memories of me. He is 5 now so I'd love another 10 years but who knows. Many hope to see their own children grow up so I can't complain.
All the very best to all who walk this twisty, rocky road, we are all with you and will support as much as we possibly can.
A big thanks to all the original Tamoxigang who were so supportive when I got myself into some dark places xx

great post raaraa

Me: dx 31.5.13 aged 46 with ER+ PR+ HER- multifocal pleomorphic lobular cancer. MRI indicated 7cm + 2.5cm + 2cm tumours. Neo-adjuvant chemo of FEC-T, then bilateral mx with node clearance on cancer side. Path report indicated only main tumour left 3.5cm, 1/15 nodes affected (onc pleased with response for a lobular cancer, which often doesn't respond well to chemo). Then 15 rads to chest wall and supraclavical nodes + tamoxifen. Just had 6 months post rads check up and I'm still NED, long may it stay that way.

update time...
diagnosed in 2009 with 2.4cm grade 2 invasive ductal carcinoma and associated dcis...WLE and sentinel node biopsy which was clear, ER+ so tamoxifen following radiotherapy.
2012 diagnosed with multiple lung mets across both lungs. Capecitabine for 18 months which was successful in reducing lesions but disease progression in April this year so now on docetaxel.2 rounds done,4 to go before another scan. This is why I reacted quite strongly to really's all clear pronoucement..this disease is unpredictable in every way....my original prognosis was excellent and it seemed quite unlikely given that that I should develop secondaries.

Yes, Mas, I can very much see that. Grey lady - I see your occasional posts on other threads, you are a sense talking person!
I just want to see my children grow up - as we all do. I'm spending the weekend with my in laws as it's their ruby wedding, I'd like that too! DH and I got together in 2nd year of uni,this year we have been longer together than we were apart. Come on you NED!

Thank you all for sharing your stories. It really just confirms that every cancer is unique to each individual and that no two treatment paths are the same. In time I too will have my own story to tell.

Thanks lily for the legal info and thanks rahrah for the encouragement. Don't worry about the MacMillan site upsetting me. I'm meeting someone from the oncology team next weds to hear about my treatment plan so I have only brought forward the inevitable for a few days.

So my boss rang me late this afternoon. He'd spoken to HR again and they all agreed that it was probably quite harsh to be so rigid with their original response. So they have agreed to increase my sick leave to 8 weeks - the maximum for my grade (it's all based on length of service and I haven't yet qualified for this allowance) but this will be reviewed as I go through my treatment.

Its not great but I'll go with this for now, I can't be stressing over it.

Ironically the company are having a 'wellness day" day next week to promote work life balance and looking after yourself so I've booked myself a free 15 minute massage which will be good :-)

Rads finished. I'm feeling exhausted all of a sudden and in pain. Spent three hours at the hospital this morning, instead of just the 5 minutes rads session because they wanted me to see bc nurse and a doctor. This afternoon had to visit surgeon unexpectedly at my local hospital to check my unusual skin reaction. All fine but lots of pain killers and dressings.

I was feeling quite optimistic until I read a post above which is similar to my situation but which has behaved in an unexpectedly bad way. So now I'm scared again.

I'm going to drink some wine tonight and have a few days away from here, it hasn't been comfortable reading for the last 24 hours. I think the heat is getting to people. Hope everyone has a good weekend.