**Tamoxigang 53** Roll up, roll up... Anyone with any cancer (or test-waiting) welcome!

[MarthaCostello]

Good evening all,

The old thread had nearly run out when I posted so I have taken the liberty of starting a new one before it fills up completely.

I hope the title is OK - there isn't actually that much room, I was trying to fit in that people should come along even if they haven't been diagnosed yet.

If you're new here welcome to the Tamoxigang thread. This is a great place for anyone with any type of cancer (it originally started out as those taking Tamoxifen for breast cancer, hence the name, but has expanded). Please introduce yourself and make yourself comfortable! You're more than welcome here if you haven't been diagnosed yet too, sometimes people find it helpful to talk through their fears whilst waiting for results. And we will hold your hand until you find out, and hopefully wave you on your way with an all-clear :)

There is almost always someone around to chat, or to answer any questions. Nothing is off-limits here. This is somewhere to offload any fears and frustrations, in a safe place where someone will have been there before.

I hope everyone has been enjoying the gorgeous summery weather

Oh royal, I'm sorry to hear that but you will get through it. I feel bad saying that because I didn't need chemo so it's easy for me to say. I would be equally devastated if I had to face it, which I may have to in the future, who knows? I can't offer any further practical advice from here on, I do know there are different types and regimes and once you know the details someone here will have had it I'm sure, so stick around.

But you must be feeling so many emotions at the moment, hopefully your next appt will make everything clear and you'll get your head around what's planned. Somehow having all the details helps, you have facts rather than an imagination running wild.

With regard to second opinions, by all means make enquiries. However my understanding is that decisions about diagnosis and treatment are not made by one person. There are multidisciplinary meetings each week where a whole team discuss and agree the care of each patient. It may mean having to go to another hospital, all of which takes time. If you have private health care eg BUPA, you could contact them and speak to their oncology team. I did that but actually had the nhs treatment as it was so quick.

When I had my post op appt DH took a notebook because there's a lot to remember.

Hi, am recently diagnosed too. Have 2 different types of BC in one breast (I know am greedy apparently!) a small grade 1 tubular BC and a smallish grade 3 invasive ductal one too. Due to high family history of BC, even though they are small, it was suggested I had a mx. I decided to have a bilateral mx with immediate Diep reconstruction (as really don't want to go through this again so anything to lower the chances). Had a snb two weeks ago which came back showing one of two nodes taken had the ductal cancer in. So am having a skin saving mastectomy with expandable implant in August then Chemo then Radiotherapy. Hopefully if all goes well I can have the bilateral mx and reconstruction in April/May next year. The last two months have been a nightmare that feels like it's lasted two years not two months.

Royal I feel for you, really wanted to not have chemo and radiotherapy :( I want to do the stuff I always do and spend time with my dc not feeling ill and now feel time has been stolen from me. Have found this site fab for showing me how brave and resilient people are :). It also gives me hope that I can get through this!

Hi
I'm 35, I have stage 4 cervical cancer.
I've had to rounds of radio, a round of chemo and a couple of surgeries too.
I have been lucky enough to have just received CYBERKNIFE, (proton beam therapy) at the royal marsden paid for on the NHS. So I'm eagerly awaiting to see if it worked
I've been on this journey for a few years now. It's hard to stay positive when it's so shite, but I do my best.
I've done a lot of work with McMillan which has kept me busy since taking early retirement. But I feel a bit lost now and don't feel like I've got much of a purpose now I'm not working and my daughter is getting older. But I'm grateful just to be here, I was given 6 months to live 3 years ago.

Welcome Giddy I had bowel cancer so no useful experience. Hopefully this will just be a flying visit for you :) all the best for your tests and results

Stay hi. Sorry you're in this boat too! Chemo is not much fun, but you will still be able to spend time with your children and do nice things. Most breast cancer chemo is in three week cycles, and people tend to have one "good" week with fewer symptoms. I had bowel cancer so no personal experience, but most people here have had breast cancer chemo so should be able to help with possible side effects etc. :)

thehousewife welcome that's great that you proved them wrong! Fingers crossed for the cyberknife having done the job

I've been doing some work with Macmillan too, and also CLIC Sargent (as I was 21 at diagnosis I was assigned a CLIC Sargent social worker rather than a Macmillan nurse). It's nice to be able to "give back".

I sometimes feel a bit purposeless too. I finished university last year, but I haven't been well enough to apply for a job yet so I am still living with my parents and not doing much to contribute to society. Do you have any hobbies that you could pursue? Or perhaps a local club? I joined a choir which I really enjoy. I'm rambling away, sorry!

I hope everyone is fast asleep. I was absorbed in a task and didn't notice the time. I'm off to bed now! Best wishes to everyone, night night

I'm just checking in from New York,had a week here then going on a cruise today to the Caribbean am having an amazing time. Not telling you to brag but more to say that my first chemo was 2 years ago this week so for those of you at the start of the journey there are happy times ahead. Love to all and I'll catch up when I'm home x

My first chemo was two years ago last month ... and I'm sitting at work (not on some fab cruise like Malt!) I've been back at work full time for over a year, and worked part time throughout treatment.
In between work, we make sure we have plenty of holidays, though!

Malteserzz, enjoy your trip! You deserve it!
Lily, you and malteserzz both inspire us novices :) i am hoping i get through my chemo cycles intact as you two did and live to have a cruise or even get back to teaching which I love:)

Malteserzz, lucky you! Which bit of the Caribbean are you going to?

Royal, I haven't found chemo that bad. I have 2 young DC and have still had lots of fun days with them. I have only been sick once and felt better straight after, and that was a stomach bug. I have had aches on the tax, but some prescription painkillers sorted that out right away. Some tiredness but nothing bad. Otherwise pretty much fine 95% of the time. :)
Hopefully you will be ok too.

A new small lump has appeared in my breast which is annoying as I was lump-free for a few weeks. :(

Also a mole on my back is playing up (painful) and have been referred to a dermatoligist. It had better not be skin cancer!

Horchoc , thank you. I am hopeing i am one of those who do not suffer terribly from the chemo.DH is so helpful and supportive, but when he goes back to work, it will be tricky. I would absolutely love to hear more about those who have had chemo..hearing real life experiences, whether pleasant or tough, help me sort of figure out the theoretical elements.

Oh and hotchoc, i do hope both the lump and mole are just annoying things and nothing at all serious.

royalmama
It depends to some extent on what chemo you have. FEC-T is fairly common for breast cancer.
I've only had the "T" part which is supposed to be worse than FEC, though FEC is associated with nausea. My experience was that Week 1 was hard and on days 3-5 I felt pretty rough. The rest of the cycle wasn't too bad - I managed to work and go away for the weekend most cycles.
Some drugs lead to hair loss, others don't. I think they all tend to make you very tired.
And the actual side effects vary wildly from person to person. Some people get through with relatively few side effects, others are floored (particularly by the "T" and towards the end of the whole chemotherapy cycle.

Hi all.

Just back from my 6th weekly tax. I cant believe how fast its goin.
Ive broken out in a skin rash, side effect of tax. I have antibiotics for it, so hopefully that will get rid of it. Other than that a bit tired on chemo day, but that might be from all the sitting around.
My hair is still slowly goin, even though i shaved it. I dont mind my shaved head and ive got the knack of the scarves now. Although some people are very rude and keep staring, i wish they'd say something than stare. Most people are positive and very kind.
My eldest son reckons my shaved head is cool. So i must be. Lol. My kids are not at all freaked or bothered about it.

Royalmama, chemo is nowhere near as bad as i thought it would be. Im very well and havent felt sick at all. I had visions of them dragging me in for chemo kicking and screaming. I was fine. I found once you have your treatment plan in place, you feel much better.

Hope everybody else is well.

Feeling a bit shy, but thought I would say hello and ask if I can join your gang, please? I have stage 4 bowel cancer with spread to a lung and peritoneum - was diagnosed in Jan 2014, had surgery to remove primary and 16 cycles of chemo, was supposed to have lung surgery this June but pre-surgery scan showed the peritoneal spread, so I am back on the chemo. Two cycles in and doing fine, though perma-sleepy. Proud owner of one lovely husband and one DD (6) and DS (3). I'm a bit of a forum lurker but have rarely posted but could do with some support/chat/laughs with mums in a similar situation.

Thought I'd say hello SookyBunny. Your treatment sounds tough but you sound like you're coping admirably

Hello Newbies, nice to meet you all, and you are all welcome in Tamoxigang.

Got my three year mammogram tomorrow. Had one of those moments earlier when I convinced myself that my breast was lumpy and painful. It seems fine now.

Big hugs to all you chemo-babes. I was fortunate in that I didn't have it. I must admit, I was sooooo relieved. Having an op and radiotherapy wasn't to bad. I didn't really feel like I had cancer. However, if I had to have chemo, then I knew reality would have hit home. Did anyone see Carol have chemo on Eastenders? I thought it was good they showed it.

Not sure whether I feel like having a glass of red wine or cocoa. The weather has autumnal recently, so I guess the cocoa will win.

Helo SookyBunny. You are doing just fine!
For thise who lost their hair due to the chemo, can I ask about the eybtows and eylashes too? How did it happen and would cutting my hair ultra short like a boy help minimise the effect?

Royalmama
If you cut your hair short it has two advantages:

1. Less to fall out!
2. If you cold cap, a short cut is recommended as the best chance to keep your hair (think Boobz would be the expert on this).

When I was on chemo, I didn't lose all my eyebrows and lashes. Both got thinner but fortunately, I only needed to use a bit of eyebrow pencil and eyeliner to make it look OK. Some people lose more, some less. If you do have chemo, get booked onto a Look Good Feel Better class - make up tips and a goody bag of a complete makeup kit!

Lilymaid thank you so much for your feedback. I thunk I am going to go get a very very short haircut and take it from there. I hear cold capping has its issues , something to do with the chemo missing the scalp and worries about that. However, I do not think I would be ready to shave it all off so early on tbh, but then I worry seeing it come off in lumps might uoset me.
I do no think the idea of wearing a wig appeals to me. I may be more inclined to wear a hat or scarf, but I am not so sure about how my DC will react to all these changes in my appearance, as DS1 is 9 and very curious and easily agitated. He got rather anxious when he saw the scar on my forehead from that unfortuante fall I had after my surgery although i had discussed it with him and explained what happened and what the scar was.

Hi all

Welcome to the newbies, but sorry you find yourself here.

malt hope you have a fantastic holiday.

I have been thinking for ages about whether to post this or not. BUT feel that the one thing I have lacked in the last few months, is support from others who AREN'T doing so well, post treatment.

Now this is by no means meant to upset anyone, and if anyone thinks I have over stepped the mark then please feel free to have the post removed!

I was diagnosed 2 years ago next month! I went through surgery, Chemo, more surgery and Radiotherapy. I have now developed Lymphoedma, and am struggling with the Hormone therapy!

I frequently come on here and read how everyone is doing, but then feel very down and depressed that I DON'T feel like that. I haven't got my life back yet. I am not the happy person I used to be. I am in pain a lot of the time, and I am still trying to come to terms with the 'new me'. BUT I am still fighting on and I know I will find myself in a better place one day!

I just want to say to anyone else struggling that it's okay to admit you are angry, scared, upset or whatever you are feeling. YES there is life after BC or any cancer, but for those of us who experience severe side effects from the treatment or hormone drugs. Life isn't the bed of roses that maybe we were hoping for, but that doesn't make us failures, or pathetic (both things I have felt) It makes us people who just have to keep fighting that little bit longer! But I'm sure we will all get there eventually. I just want anyone else out there feeling like I am, to know they aren't alone! And although I think it's great that people come on and share how great they are doing now, I think it's also important to know that for some people getting to that place takes longer.

I think sometimes we have to share the down sides, for us to appreciate the ups! Xxx

Lovebeingananny that was a very honest and brave post in my opinion. I guess many of us who have only just been diagnosed want to hear about the happy episodes because in fact we are scared and worried big time, and know deep down inside that life will hardly ever be the same again for us. I have had my share of worry and anguish since being diagnosed and I come on here because I feel less burdened being amongst people who can relate, who can really talk about it and who can advise and support. People who have not had cancer or have not been with cancer patients ( as i once was ) try to help but I feel that they are not able to understand and rather try to sympathise. I am sure all of those here have had tribulations as well as triumphs. You know, because of all the scientific and medical information I have been browsing and digging up since I was diagnosed I have strived to communicate with real cancer patients like myself who can tell me what it has been like for them so I do not feel alone and your post is one of those shared experiences which you may think it is starkly deviant from what has been posted here it, but is not because you are here to talk, to share, to open up amongst people who know, who suffer, not because they know you personally but because they share elements of your journey in some way. Please share your pain with us as it helps not only you but us who need to feel this is the right place to seek when we have our own pain and struggle whilst being treated. You mentioned lymphedema, one of my essential worries since being diagnosed, and I thank you for that because it is a real risk.
Your post has not scared me because I do not think there is anything more scary than having cancer in the first place don't you think?

Hi nanny, I'm sorry you are feeling that way but I'm not surprised. I can only talk from my own experience but although physically I'm doing well, mentally I do think I've changed. Like you I feel less happy, I'm more serious and quieter. More likely to be lost in my own thoughts, less willing to take on the worries of others and shamefully that includes my own family.

I've discovered the people I can rely on when the chips are down and been quite ridiculously upset by certain people who have not lived up to expectations. That has affected how I feel about certain people going forward, relationships that I wish hadn't been tested.

I'm sure we all have our rubbish times, whatever stage of this we're at. Whilst its good to reassure the newly diagnosed that treatment is doable and life continues afterwards, I do think its important to be honest about how bad you do feel at times, physically and mentally. Whilst some may carry on at a mad pace and seem to throw off all normal side effects it could make others feel even worse if they are just not able to manage basic things for a while.

Being in pain is exhausting and depressing and if you don't see an end to it no wonder you feel sad, angry, scared etc. I feel most of those everyday too. Nanny, it's important to say how you really feel.

hotchoc how frustrating about the lump. I hope the chemo sorts it out swiftly. And I hope that your mole proves to be harmless

Cailindeas I hope the rash clears up quickly!

SookyBunny welcome of course you can join. Feel free to lurk or post whenever you like. I had bowel cancer (stage 3c) a couple of years ago. I'm not a mum though, but still happy to chat, and there are lots of posters here who will understand the challenges of cancer treatment and young children. There's another lady with stage 4 bowel cancer, so she may be around soon :) what chemo are you having?

nanny sorry to hear you are struggling. I won't pretend that I fully understand what you're going through, but I know several people who have really struggled to reach a "new normal". It must be a lot harder as you're sort of in limbo I suppose with the liver/watch and wait. Maybe someone else with experience of that will be better able to advise. I do understand about the longer term side effects though. At the moment I can't work so I feel somewhat guilty for being so dependent on my parents. I am slowly getting back to better health so that I can start job-hunting! I am wittering on, not entirely sure what my point is.

Do you have much real-life support? Are there any support groups nearby? There are quite a few breast cancer groups around here. Perhaps it might help to meet others in the same boat. I also have a friend who goes to a specific secondary breast cancer group, which she seems to find helpful.

Everyone should feel able to post anything here, so no need to apologise. I'm sorry you have felt that way. Cancer isn't about success or failure. It's not a competition, and no one fails or is pathetic because they don't bounce back immediately, or for any other reason :)

I hope this doesn't come across as rude, but you mentioned "fighting" and I sort of wonder if maybe feeling that you have to fight is contributing to feelings of failure? Because you feel you haven't fought hard enough or something. That's part of the reason that I personally dislike the whole cancer fighting rhetoric. I find it can unintentionally place blame on the patient if treatments don't work or if they suffer lots of side effects. I preferred to think of my body as just the battleground, with the fight between cancer and medicine. I'm not suggesting that there is any right way to think of it all, but just remember that your body has been the site of a battle, and rather a bloody one in your case. It is bound to take a while for all of that to heal, physically and emotionally. Try not to be hard on yourself. You are not a failure. You're just someone who was unlucky enough to get cancer.

royalmama lots of people feel that way when they are first diagnosed. Your life will never be exactly the same, but you will find a "new normal". It might take a little time. You'll get there though.

That seems quite long enough, so I will leave it there. I hope everyone else is having a nice Tuesday

Nanny
I am struggling with the hormone therapy (Exemestane) at the moment - feeling really tired and aching. I have three more days at work to get through before a long break and am willing myself through those.
It is pretty difficult to find that "new normal" when you have not had a complete all clear (and I'm sure that even those who get an all clear, still worry it might return).
On the whole what we try to be upbeat about on this thread is the individual treatments to say that "yes" you can get through them and they may not be quite as bad as portrayed in the media. Saying that, I haven't had an MX and that would fill me full of dread, even though people here say that they have got through it well both physically and mentally.
So, we are definitely allowed to vent at:

1. Having the bloody thing in the first place
2. Being in pain
3. Losing hair
4. Having to worry about scans and forthcoming appointments for a significant part of our year
5. People who tell you that you look well, even though you feel like shit and you are in fear of worse
6. People who literally or otherwise "walk on the other side of the pavement" now they know you have cancer
7. The constant fear of not being around for your children to grow up/grandchildren to be born etc.

I could go on, but feel it is time for someone else to pick up the rant!

Not directed at you specifically nanny, but posting made me think of an article I read a while back. I couldn't find it, but found this article by Kate Granger in a similar vein. I quite liked it.

I especially like this part "Bravery implies a choice. Someone who lays down their life to save another human being is brave. I didn't choose to be affected by cancer and I don't believe being placed on the courage pedestal helps me to continue living. Just because I have cancer, it doesn't mean I cannot make mistakes or be selfish, but it almost becomes an expectation that because you are a cancer patient that you somehow become the perfect person."

It is very similar to what I say to people who call me brave, once I'm finished with the eye-rolling I don't understand why having cancer would make someone brave, unless they deliberately had it in order to develop a cure

I've come across too many newly diagnosed people, online and in real life, who think that they aren't brave enough to cope with a cancer diagnosis it can really add to the shock and upset of diagnosis, so if anyone here thinks that, please don't worry. You will get through this. You don't need to be brave. You can weep and wail and scream and swear if you need to. Cancer treatment is unpleasant, and endlessly dull, but it is bearable. You will still have plenty of happiness too.

Anyway, that really is enough from me! I am stepping away from the keyboard, I promise :)

Thanks for all the lovely comments. I'm glad what I wrote didn't upset anyone. I just wanted to try and put another point of view across.

martha I have looked into support groups, but sadly as a nanny I work long hours and finish too late for the evening ones. However I change jobs soon and will have a different set of hours, so hopefully I might find something that works. Good Luck with your job hunting! Xx

I think the main point I wanted to get across, was that it's okay to struggle! It's probably the one piece of advice I need to keep telling myself! But if what I wrote helps just one person to not feel so isolated, at a point where those around them think everything is back to normal. Then I think it was worth writing! Xx