**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

Hi Donki I totally feel for you! I too suffer with bad side effects, although I am on Tamoxifen. I have discussed with Oncologist, although he wasn't much use. So I have decided that unless things improve greatly in the next 10months, I will be stopping the tamoxifen at the 2 year mark! I need some quality of life back!

Have you tried changing brands? I know with Tamoxifen different brands can have different side effects! Also speak to your Oncologist or GP and tell them how you are feeling. See what they suggest. It's horrible feeling so crap, and worse still because we know how long we 'should' be taking the drug. Sorry I haven't been able to offer much advice to help. But I hope it helps to know you are not alone! Xx

Hi royal Hope your first Chemo went okay. I just wanted to reassure you that you don't have to avoid your children I worked as a nanny throughout my Chemo, and during that time, they had the usual coughs and colds. On top of that their school and nursery, had slapped cheek, hand,foot and mouth disease, and chickenpox going round! I got through treatment okay. I think partly because my immune system is pretty tough, having worked with germ ridden children for so many years

I think it's sensible to make sure you take some precautions. Avoid other people who are obviously sick, and make sure you wash your hands regularly. I had some of the travel antibacterial gel. I had one in each room, and always used it after wiping noses, or dealing with anything yucky!

Good luck, and take care xxxx

Lovebeingananny - I have changed to Letrozole from anastrozole to see if it would help. I have another review in a few weeks where we will discuss options...

My sister is on Tamoxifen - and brand seems critical for her.

Best wishes for everything :-)

Hello nanny and chesty and thanks for asking. I haven't had the first chemo session yet. We have moved it to the end of next week as they are making me do some tests.
Thanks nanny for responding re kids and infection. I was getting this rather eerie image of me pushing my kids away for fear of getting infected:(
I was offered cold capping today, but I don't think I will be going for it as I have sinus problems which give me nasty headaches and I was cautioned it could aggravate the headaches. With all the other possible side effects to deal with, I could do without bad headaches!
Oh why oh why do doctors and nurses and friends and family keep going on and on about the need to eat well during chemo! Groan! I mean I have done all my reading and I know why and I understand the concern, but I am starting to become paranoid about this whole " you gotta eat and take care of yourself" thing as images of me unable to open my mouth and chew or swallow are now dancing in front of my eyes.sigh.

Hi Royal you will soon learn that family and friends will come out with the same classic lines, over and over again! Just to reassure you, I went through Chemo with no issues with eating! Except for the weird tastes on FEC and then absolutely no tastebuds on Tax! But you learn to find things that you can still enjoy, or at least enjoy on your good weeks! On Tax particularly I found I had to find textured food, as everything seemed slimey! Not much fun, but you soon get through it!!

Oh and be prepared for the classic line that I must of heard a thousand times....keep your chin up!!! Now that sentence gets right up my nose! But of course it's people not knowing what else to say! I'm sure you'll be back on with a whole list of irritating phrases!

You definitely don't have to push your children away, just other people's germ infested ones In fact I found the children I look after were the ones who kept me going through treatment. Even when I lost my hair, I wore a scarf and was the coolest pirate nanny around xx

Good news at appointment, it's a cyst!

He gave me options to wait and watch, more antibiotics that my GP would have to prescribe or excision. I chose to watch and wait.

Thank you all for listening to me

Congrats chestynut..great news and a massive relief for you i am sure.

Great news chesty xx

Fab news chesty - nice to hear good news!

Chesty - good news. Hope you're celebrating tonight.

Royal mama - I didn't have chemo but a close family member did. She basically avoided crowds and any sick child or adult ( apart from her own). If she went to meetings, she would go late, sit away from people,,and leave early so she didn't have to mingle with people, and potential germs.

AmI - welcome to the site. I've been through what you are going through with unexpected bleeding, had all the tests, scans, procedures etc and came out of the other side with thickening of the womb lining, endometrial hyperplasia, but cancer-free (yippee!).

Please ask away with any concerns you have.

Yippee ChestyNut that's brilliant news I hope that the cyst clears up asap!

Waving to everyone else, sorry am too fuzzy-brained to write comprehensive replies, the old surgery side effects are rather tiring me out at the mo. But I hope everyone is doing OK

Hello. I had my first round of carboplatin today. I have already had a full hysterectomy 5 weeks ago where it was discovered I had ovarian and uterine cancer. I'm so glad to hear what you are all saying about not having to stay away from your own children. The nurse at my pre-chemo meeting yesterday terrified me and made my 3 three year sound like a toxic timebomb. It's been very helpful reading your messages.

Apologies that I've been MIA - I've got this thread on Watch, but I haven't received any email's

nanny people, as you said, try to say the "right" thing and then just end up saying something like" you can do it" about cancer and/ or chemi ,and
" if anybody can fight this it is you" and that is where you think to yourself: ok seems like they all know me way too much, that even I can not recognise me anymore!
It must be tough for the people who care about us, when even we feel so suddenly not us anymore.
I hope i don't start getting another kind of line like" you of all people should not get cancer, why you don't even drink fizzy drinks"....something tells me
I will be hearing something along that line in the not too distant future.

I think it is human nature to look for reasons and explanations. Randomness can be scary. People look for reasons why something bad has happened to someone else, so that they can reassure themselves that it will not happen to them. Then if something happens and it doesn't seem to tally up with their explanation, that can really throw them. Some people seem to like to blame people for their illnesses too!

Of course on a molecular level there are reasons for all these things, we just don't fully understand them yet.

My genetic condition always results in cancer unless it's caught in time, so anyone who said "oh, you're young maybe you eat too much cake " was easily silenced.

My boyfriend at the time was obsessed with "why did this happen to you?". I found it unbelievably annoying. I countered it with "why not me?". I'm just an ordinary person same as everyone else, there's no reason why anyone should get cancer, but as we do, there's no reason why I should be spared any more than someone else.

What I don't understand is why people make such a fuss about cancer compared to other illnesses. Cancer can be painful, unpleasant, fatal... It's no walk in the park, but I don't understand why people find it so much more terrifying that other diseases with similar, or perhaps worse, outcomes. Heart disease, stroke, MS, MND, dementia... No one seems to get quite so worked up about them which is a double-edged sword I presume, less hassle and interrogation for people diagnosed with them, but less awareness and fundraising too, at least encouraging fear of cancer seems to drive a lot of the fundraising attempts.

Sorry, that's turning into a bit of a rant.

Anyway I hope you don't get any more annoying questions royalmama.

welcome MarbleRunner, but sorry you need to be here. How are you feeling? Feel free to lurk or to post whenever and whatever you like. My nurse was bordering on hysterical about germs, but my oncologist pointed out that if it was that dangerous, they wouldn't treat us in hospital because the risk of infection is so high. Basically just use your common sense, try to avoid crowded places on your low-immunity days, usual hand washing and hygiene stuff. Most importantly follow the instructions about seeking medical attention if you do develop a temperature or other infection symptoms.

Also welcome to Donki (I hope your symptoms calm down), AmIveryunreasonable (fingers crossed for good news) and WhetherorNot sorry about your mum especially, that must be really tough. Do vent here whenever you need to I hope you have an excellent treatment plan in place as soon as possible. Welcome to any other newbies I have missed, the thread is filling up quickly!

Waving to everyone else, I hope you're having a good week so far :)

MarbleRunner
I commuted into London during my low immunity days on IV chemo and have continued to do so on oral chemo. Yes, you should be more careful than usual but you don't need to isolate yourself!

Matthacostello, I wonder why cancer is so feared and stigmatised? Could it be because it is so varied in terms of where it appears? Or maybe because of what it entails in terms of its notoriously gruelling treatment? I think it may be all that and the fact we hear more about deaths from cancer, but not so much about deaths due to, say heart disease.

Martha - yes it is difficult with my Mum and her memory...........doubly so now.

I have had my diagnosis of Stage 4 bile duct and liver cancer with mets in one lung. It is inoperable. I have been given between 4 - 9 months. I can have chemo but they say this would probably only prolong life by about 8 weeks.

What a crock of shit. Fuck it, fuck it, fuck it !!!!

Oh whether I'm so sorry words seem inadequate but big hugs and keep posting so we can support you xx

Whether. You probably don't want to hear the common expressions of comfort, but I really do feel for you.
I want you to know that when doctors give you estimates like that it is NOT conclusive. They do not have some Divine magic bal that preducts when people will die. . They work with numbers and the lot. So what I am trying to say is this: you will live for as long as you are meant to qnd ut sis your life afterall.
Life sucks and cancer sucks, but many patients who were told the end is neigh did go on to defy the odds and live longer. We are here for you. So come , vent, swear and be as angry as you care.

Whether, there are no words that can make that any easier to take and I'm so sorry you've had such a blunt diagnosis. I can't begin to imagine how you're coping with that. I hope your brother, son and friend are rallying round. Is there any point getting a second opinion?

Whether - big hugs for you. I hope you get all the support and help you need. Can't imagine what you are going through at the moment, but thinking of you at this difficult time.

Whether, sending love. When you have a moment to respond, was this the opinion of a specialist unit at the top hospitals? If not, I'd be asking for a referral - at the very least to a trial, of which there are many.

Normally liver cancer can be operated on/frozen/given heat treatment and similar with very good effects these days. And a single met in a lung can normally be treated with various options too. I want to have confidence in your team. But I'm just slightly puzzled about their opinion.
No need to respond if you would rather not.

amber - local hospital. I asked today about referral and they said they worked in liaison with the specialist unit in Plymouth. This cancer has started in the bile duct and spread to the liver then lung. It is called Cholangiocarcinoma.

I presume by 'top hospitals' you mean in big cities - we are a long way from any big city.

They told me to have my much longed for holiday at the beginning of September, then go back and see them and see if I have changed my mind about chemo.