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!

[trice]

I have just had my latest scan results and my lungs are looking good. I am looking into starting another dressmaking course in September. I am so pleased to have another three months off the capcitabene!

I am very sunburned with this gorgeous weather. I could do with some moogoo myself!

[kitkat1967]

great news trice - that's a really good result.
What dressmaking courses have you found? I'd love to do an evening class but there is nothing available round here - although I have found a couple of cafe places where you can drop in for help etc. I have a nice stock pile of fabric just waiting for me to get started - I had my sewing machine serviced a couple of weeks ago so I'm excited to try it. Have you got any specific projects planned?

[wineoclocktimeye]

Morning everyone.

Was thinking last night, a 50th meet up next year was suggested up post and wondered if anyone would really be up for it? I know we are spread around the country, but if we could find a central-ish point, whether people would actually come along??

Hope everyone has a good day.

[Lilymaid]

Wine all for a meet up if it includes those for whom 50th birthdays are now a distant memory!

Is Moogoo any better than Udderly cream? I have to use it on my hands and feet because of the effects of Capecitabine. I have considered that my feet might benefit from this!

Trice - I have a scan next Friday, but I don't think they will let me off Cape for a long time (only on my 9th cycle!).

[MomOfTwoGirls2]

wine if it is close to an airport with flights from Cork, I'm on for it.

[Wren48]

Wine, I'm up for a meet up. Nice idea.

Trice, that's great news. Lilymaid, I hope your scan goes well.

[wineoclocktimeye]

Oh yes Lily everyone is invited

[Speedypenguin]

Really- that is fantastic news.

Great news as well trice. Hope you enjoy the dressmaking.

Kitkat- hope you find a course too.

Lily- I hope your feet improve. Are they very sore? Good luck with your scan.


Am off for second docetaxol in a while. I have failed miserably in sorting the house out though! They are reducing my dose so hopefully it won't be as bad this time.

[mildmay]

hope everyone having treatment today goes ok .i seem to be taking ages getting over last lot of chemo.not looking forward to rads but also have to start taking tomoxifen next week.is there a best time to take.what mooggo should i get are there different types.im would love a meet up something to look forward to and i think dh would enjoy it as well x

[ljny]

Many thanks to wee and wine for the MooGoo advice, I've ordered! Sadly I'm in the US, so had to pay shipping (from Australia so bloody expensive).

Mildmay, it's the Skin Milk Udder Cream you want. Hope you get over the chemo soon. With rads starting, it does feel like they throw one treatment after another at us. I keep trying to remember it's the cancer being attacked, not us.

[weebarra]

And hope it includes those of us for whom 50 is aspirational! If it's accessible from Edinburgh, count me in (if I can persuade DH to look after all three DCs!)

[amberlight]

General info: Occasionally I do a general update on breast cancer in case it helps people reading the thread. I'm not a doctor or healthcare professional. I've had breast cancer and I read the research every day. I have access to the calculators that give odds, and can read the science stuff that interprets the odds. So occasionally I say something that is useful. No need to take a bit of notice of any of it. Always ask your teams for expert advice etc etc.

Breast cancer these days has an average 90% chance of long term success for the person.
If it sneaks out of the breast and into lots of the lymph glands under the arm, there's still better than 80% chance of long term success, on average.
If it is nippy enough to get past those and end up in the liver, for example (not common), but only one or two small bits - there's still an 80% chance of long term success on average with the newest treatments.
If it manages to spread to more than just one or two lumps in one extra place in the body (not common either), then teams look at controlling it so it just stops at that size or shrinks down. That can and does give most people years of good life, even at that stage. By which time we could well have even better stuff available that can stop it for even longer.
So, it's now surprisingly hard for breast cancer to kill people. It can manage it, but the teams are getting very good at stopping it doing that.
And most people will find the teams can get rid of it in the early stages.

Once it's got out of the breast and lymph glands under the arm and into the body's bones or other organs such as the liver, that's called Stage 4, and is considered 'incurable'. It does not mean the person will die from it. It means they may be living with it as a 'house guest', maybe for decades. It can pop up again even if people think it's gone. Annoying but not necessarily fatal. They will always be on long term monitoring, even if the team can't see any cancer after it's been removed surgically etc. It is never called a 'cure'.

Treatments these days are amazing. Not fun, but amazing. Teams often do genetic testing and tailor the treatment to the person's own individual cancer and body. And cancers come in all sorts of personalities of their own. Some are lazy ones that grow slowly ('grade 1 and 2' = easy to stop). Others are greedy faster growing ones ('grade 3') that are very thirsty and therefore end up drinking lots of chemotherapy and dying faster (result!!). So the 'grade' of cancer isn't that relevant apart from to the teams.

If you're on chemotherapy, some people are offered it first, before any surgery. That's so the team can watch how the lump responds. If it shrinks at all, that's good news. If it disappears entirely, they do the Hospital Dance of Joy and some high fives, since that puts the odds of long term success up to about 95% for most people. [remember that odds of success include people who are very ill with other things, people whose teams are a bit chaotic and clueless, people who are terribly old etc]

Things that can help - science now shows that vitamin D, low dose aspirin, lactoferrin, curcumin and omega 3 can all help the body do its own defeating of cancer. Ask teams about their thoughts on those. Especially aspirin, as it can cause other problems.
It also helps to have a good social life (we don't know why, but it does, on the research), and to sleep in a very dark room at night.
None of this is a guarantee for anyone. But it's an overview of general info that may be helpful.

[mintyneb]

Amberlight that makes for interesting reading. I was diagnosed last week with a grade 3 tumour and am going to be starting on chemo before surgery. I have everything crossed that my team will be doing a big dance in the new year!

I'm currently avoiding anything to do with prognosis and statistics as I'm determined to be in the 80 or 90% brigade

Wine, I'd be up for a meet up. Although I'm a complete newbie right now, come next year I'll be an old pro like all of you and would be good to meet you all in person

Thinking of elporto this afternoon as she undergoes surgery

[Lilymaid]

Ijny
The other cream, which I mentioned a bit further down the thread today is Udderly Cream which comes from the USA. I think it is much the same as Moogoo (unless someone knows otherwise).

[Lilymaid]

Amberlight thanks again for posting up that information. Worth doing every month or so just so we get it all in perspective!

[mildmay]

thanks injy will look on amazon and thanks amber once again for such positive news for us all .its sometimes so easy to forget with all the treatment going on how much things are changing all the time .

[mrsrhodgilbert]

Great news trice, so pleased for you. Your course sounds great. My nana was a dressmaker and taught me to make my own clothes. I haven't done it since I was about 20 though, it's a great hobby.

mildmay I've been on tamoxifen for 6/7 weeks now and I take it with breakfast. For the first month I did have a few night sweats but realised yesterday that I haven't had one for a coupe of weeks, no other side affects either.

I've just ordered more moogoo, a tube this time to take on holiday. Rads finish tomorrow and I'm upset to see that both scars look like they are developing lots of blisters. Not painful but annoying if they need dressings whilst we're away. I'm seeing a nurse after rads tomorrow to have my skin checked so will get advice. I was doing so well...

amber reassuring reading again. I think I'm the only one here at the moment who has just needed surgery and rads plus tamoxifen. Whilst I'm very happy not to need chemo there is a tiny tiny bit of me that thinks that not having the full works makes me more vulnerable.

Thinking of you elporto this afternoon, hope you're feeling ok when you get back to us.

[Speedypenguin]

Thanks amber for that. Will look at vitamin etc.

Hoping surgery goes well elporto.

Would be happy to meet up ( another aspiring to be 50)

[mintyneb]

So for the first time I feel like crying and why? Nothing to do with the cancer but my b*y work! Just had a chat with my manager and I asked if any discretion could be given with regards to sick pay as I'm entitled to a miserly 4 weeks paid leave. Apparently he asked our HR team but no, they apply a 'strict policy' with no exceptions.

So now instead of thinking of just me getting better during my chemo I'm going to be dragging myself into work so I can afford to live :-(.

So p*d off

[Lilymaid]

mintyneb How rotten of your firm! I was treated extremely well during chemo (and still am). They employed a temporary assistant for me who was full time in the office.
FWIW, I found:
Week 1 - work was very difficult but I did some remote working backed up by my temporary assistant
Weeks 2 and 3 - felt rather better (though not "normal") and I went into work some days and worked more productively from home on other days.
The use of the assistant could be justified as we had some projects that needed doing (and which I was very glad that someone else did rather than me).
I have heard of some people working full time during chemo apart from hospital visits. I wouldn't have been able to do that myself, especially as I have a long commute. I suspect they did this only because they had to in order to survive financialy.

[helzapoppin2]

mintyneb, have you talked to Macmillan?
Your post has made me so angry! I've been through chemo, and it's doable, but not a joyride! I was lucky enough not to be working while I had mine, but it would have been touch and go of days when I could have managed it and days when I couldn't.
You need some advice on your rights and entitlements to see if there's any more help you can get. Try Macmillan!

[RahRahRasputin]

trice I am so pleased for you and great that you're getting time off the capecitabine, enjoy.

Which brings me to lily, I saw your post earlier and capecitabine is most certainly "proper" chemo, I had it in combination with oxaliplatin but after disastrous first cycle I had a couple of just capecitabine and they were fairly grim too! So I reckon you should get a treat every couple of months anyway

I don't post very often as I don't often have much useful to add. Hello to all the new posters. I'm sorry you've had to join but it's a great thread. I much preferred it to a couple of other ones I looked at, before posting on MN, which were full of people with their TNM stats in their signatures, and faux inspirational quotes, and either "brave survivor" or "still fighting" type statuses. This thread was a bit of a sanctuary from the sometimes tacky world of cancer!

Most people here have/had breast cancer so I'm a bit of an odd one out with my colon cancer, finished treatment about a year ago, now I just pop in occasionally. I tend to scan the thread and only post if there's something I can help with :)

I was coming on to see if anyone has heard from BishB/MyNewNormal as I haven't seen any posts from her for a while. I think she was just about to start another cycle so I wonder if she has had trouble with side effects again, I hope not.

I hope everyone is finding the weather okay, especially those on chemo. Best wishes to you all

[Wren48]

Minty, that is stingy sick leave. I could not have worked through the majority of my chemo, but others of course have; it's very individual. Is the 4 weeks per year? Or is there a way of topping up the sick leave entitlement with a few days here and there? I second what others have said about talking to Macmillan's.

And thanks, Amber! As Lily says, we need this on a monthly basis (sometimes more when the mood is low). I'm going to show it to DH as it will cheer him up too.

[RahRahRasputin]

minty definitely second the advice to contact Macmillan, they have a slogan along the lines of not bearing the cost of cancer alone. Also they have specialised employment advice teams - they can direct you to information to share with your employers and I think can also speak directly with your employers.

In general, Macmillan have really useful advice about most aspects of cancer. Their website is reliable for medical information, e.g. they have fact sheets about most of the chemotherapy drugs/regimes so you can see what side effects are more likely. I always recommend searching on Macmillan rather than Google if you're even vaguely anxious about anything.

During my treatment a Macmillan post-treatment exercise programme was piloted in my area so I was able to take part in that, which was brilliant. They are going to introduce it in other areas, I think, as it was such as success. In the meantime, they have a fitness pack available with a diary and lots of advice on exercising during/after treatment. It can really help with fatigue etc.

I also went on a HOPE course, which are run all over the country, it stands for Help Overcoming Problems Effectively. It's all about getting your life back after cancer, probably more useful for people with anxiety/worries/depression, but I still enjoyed it and it was lovely to meet people in a similar position, so I'd recommend it to anyone who has one nearby :)

Whilst I've posted a massively long post I might as well mention Look Good, Feel Better. They run make up workshops for women undergoing cancer treatment, including things like drawing on eyebrows and disguising missing eyelashes if that affects you, and you get lots of fabulous free products.

[mintyneb]

Thanks everyone for your advice. This is all so new to me that I don't really know where to turn for help - apart from you guys of course!! Macmillan sounds a great place to start. I will try my managers boss who is a board level director and see if he can do anything. I get on much better with him.

I've never liked my manager, he's a complete arse and tends to make you feel like shit on the sole of his shoe unless you're in the in crowd. When I chatted to him this afternoon - the first time we've spoken face to face since my diagnosis - he asked how I was. I replied I felt absolutely fine physically and it's really hard to believe that there's something inside me that could potentially kill me. He pulled a wired face and replied we all get in cars every day...

When I said I couldn't afford to live on just statutory sick pay as I've got 'bills to pay', he said we'll I've got bills to pay too!

Arrgghhhh!

RahRah, some great advice there. Funny I was at fundraiser for look good, feel better only last summer. It sounds like they do a great job.

I'm home now and just want to cracking open some wine.... except we don't have any :-(. Maybe I can persuade DH to pop out later