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!

Happy birthday, birthday twin wee. I hope you have had the same glorious weather, had lunch outside catching the sun, in fact overdid it a bit and have spent the last 2 hours in bed! Still not many years, I have been able to do that.

marshy hope you are not feeling too glum about your DD this evening.
elporto no point in telling you not to worry, so hope you find a distraction.
Nice of ITV to schedule the new season of Downton Abbey for my birthday!

Hello all. Just thought I'd ask for some advice re my DS. I'm guessing from the title that you're mostly breast cancer ladies here, mine was in the rectum and discovered on the first day of the summer holidays (epic timing) I'm 40. Anyway, I had the left part of my bowel removed on 27th August and have a temporary ileostomy bag until at least 3 months after my 6 months of chemo is over. The cancer was pretty advanced but I ought to make a full recovery as it was caught just before metastasising.
DS is 6 and has dealt with everything in a very grown up manner, which isn't always a good thing! He has asked lots of questions with his encyclopedia handy to look at diagrams of bowels! He has become a little withdrawn at school, and his work rate has slowed down. He now wants to be alone when he gets upset, this can be anything from banging his knee to falling out with friends. It's as if he doesn't want me to deal with his crying. This week he has developed a tic which involves rolling his eyes. I think it's a stress response. He has made some quite alarming comments such as everyone at school 'turning dark' against him or things like 'this is just how my life is turning out' when things go wrong for him. It's pretty heartbreaking. He's lashing out sometimes, it's as if his responses are all very heightened. I would really appreciate any input or wise words from people who may have any experience of dealing with a child's response to an ill parent.
I've not had time to read all the posts here but I hope you're all coping as well as can be expected with your diagnosis and I wish you all improved health and vitality.

Gilly, I have a six year old too (and four and one). Like your DS seems to be, he liked knowing as much about what was going on as possible. Obviously, things were discussed in an age appropriate way, but he did want to know eg, what chemo was, why the cancer started in the first place (I have the BRCA2 gene).
He had a great NQT as his class teacher last year, but she said he did have anxious moments and he also developed a need to go to the toilet a lot - I think it was to do with needing to be alone.
I remember him also telling me he felt sick a lot but that was really because he wanted to stay at home and look after me. I pointed out that there were lots of people who HAD finished school who were looking after me.
Have you looked into counselling or art therapy for him? Sorry I can't help, but I know where you're coming from!

Hello gilly sorry you are needing advice from this thread but pleased that you sound quite upbeat about prognosis. I have 2 DDs, much older than your little one - 15 & 13, however, the reaction of the younger one has been fairly similar to what you have described. I don't really have any words of advice, but like wee can share your concerns. My youngest doesn't like talking about my illness and didn't want any of her friends to know, with her worry manifesting itself in those heightened reactions you mention. Total opposite to her sister. All I have been able to do is be there when she has been ready to talk or ask questions (normally quite in depth medical ones) and cut her some slack the rest of the time. Sorry not to have any more concrete advice god you.

Welcome Gilly though sorry you have to be here. Most but not all of us have breast cancer but the thread is for anyone with any type of cancer as I'm sure we all share the same fears and worries. My 2 are older than yours too, were 10 and 14 when I was diagnosed and they've been fine. Not sure the younger one especially realised how serious it us, I couldn't bring myself to tell him it was cancer just that I was ill. Your poor DS I presume you've spoken to school so they know what's going on, think all you can do is to continue to talk to him and reassure him. He will be fine I'm sure :)

Hi Gilly, my DC are 6 and 3.5. The older one had quite a few questions at first, and I expect there will be lots more once my chemo starts. Her main worry is my hair falling out, this really really upsets and panics her. My main strategy is lots and lots of cuddles, telling her I love her a lot, reminding her that she can talk to me or DH whenever she wants and ask us anything at all, even if she thinks it sounds stupid. She is definitely worried but so far she is doing fine at school and socially, just more clingy than usual. We are working hard to keep life as normal as possible for both of them which I'm sure you are doing too. Best wishes for your recovery

Hi gilly, yes a lot of us have/had breast cancer, but there is a fair smattering of other cancers as well.

My DS was 9 when I was diagnosed, I didn't tell him for ages. I kept my hair for quite a while and when it finally started falling out he found it hilarious. But then worried that other people might be mean to me.
Of course he kind of sussed out for himself what it was and asked me outright and we had a chat about it. He had a lovely school teacher who kept a close eye on him too.

You could try mcmillan for advice or there is a charity called Winstons wish who might be of use, but I had a look and it seemed to be more worst case scenario

I am suffering from Rads burn .... The bit by the clavicle is very sore, spoke to my bcn and she said it should stop soon as its nearly 2 weeks and she said the 'heat' should go any day now.

Hi Gilly. My boys are 9 and 12. They had their moments at the beginning but have now settled and seem happy to ask questions. I think, as someone else said, Macmillan have people that can talk to the children.

I went to see one of the BCNs today to look at photos of reconstruction and talk through the op a bit. Nippleless breasts didn't look as scary as I thought they might be so that was reassuring. Bit worried about how I am going to cope after as she gave me a list of all the things I couldn't do. Not driving for six weeks will be fun! How did other people find this?

Foo hope your burn goes away soon.

Speedy, you're right, a nipple-less breast is totally fine

Having said that, my BCN gave me a hilarious prosthetic nipple last week so that's always an option if you can keep a straight face. I'm not sure if I should wear it everyday or save it for special occasions like Christmas and birthdays Then there is obviously the concern that the kids will find it...

Elporto. One of my friends pierced her prosthetic nipple .

Omg speedy that is awesome! My surgeon has said she'll reconstruct me a new nipple next year & I was wondering about requesting something different instead - a star? A smiley face?

That's a good idea. Could be a new party trick!

When I had my BMX, the surgeon was trialling a new method and rather than a flat chest I was left with what looks like 2 sacks that have been scrunched up and all the air squeezed out, probably nearly enough to fill an a cup - bearing in mind I was actually well endowed in the first place, quite a lot if spare skin. He also left about 2 thirds of my aureole which have been puckered up so they almost look like a nipple. The whole things looks pretty messy at the moment but is supposed to help with reconstruction - anybody else had a similar procedure?

I've not heard of that buns. I've been told my nipples and aureole are going.

When did people start to drive again after their ops?

Afternoon all
Hope everyone is doing ok. I am being very lazy this week. I've seen a couple of friends yesterday and today and have another visit planned for Friday but apart from a bit of pottering around the house and giving ds lifts to school because I'm here I've done little except sleep. I just feel exhausted but I guess that is the stress of the last couple of weeks. I'm going to make myself a to do list I think as the only way to overcome the lethargy.

So prosthetic nipples......what are they all about then?! My BCN suggested a stick one one (well, two I guess) but I'm not sure I see the point - no pun intended! I don't mind the look of being nipple less though I am a little bit sad at losing the sensations once and for all when my 2nd nipple goes. I do quite fancy the idea of tattoos maybe. Dunno yet.

Speedy you asked about driving. I tried at around 4 weeks I think it was, but could feel it pulling so gave it a rest again and just reintroduced it gradually. Not driving meant I had to slow down and rest which I think was a good thing but it does present some practical issues. I did quite a hitnof walking which I think was generally beneficial. Fortunately no school run for me. My surgeon was very strict about no arms above shoulder height for 6 weeks and I was very careful about that. I had quite a bit of tightness in my armpit and down my arm but I did my exercises as far as I could and that eventually went. It was painful for a while though.

Elporto - hope you are finding some good distractions.

Bye for now

I drove after about 3 weeks speedy but I didn't have reconstruction (bmx) and we have an automatic which meant I didn't have to move my lymph node removal side very much.

Hope the chemo went well minty and you are sickness free.

Hi speedy, I drove (out of necessity) after about 10 days. Probably a bit soon, as I popped my drain wound which leaked a bit - sorry TMI. But carried on driving and was fine after a couple of weeks - like wine that was BMX and no reconstruction.
Feeling very sorry for myself - this is supposed to me my 'well' week but have a stonking cold.
Mum was discharged from hospital today, she is a bit overwhelmed and also being home has brought home how much she can't do yet. Early days - knew it would be tough and I'm not feeling well enough to chivvy her out of it.

Thanks wine. I'm just feeling so sick despite all the meds. The nausea kicks in within about 4 hours of treatment for me.

Thinking of everyone also having treatment this week or awaiting test results, surgery or chemo plans

minty are there more/alternative antisickness medications they can give? Supposedly there are nine but not all are suitable for everyone. I sympathise as I had nausea for 20 of the 21 days of my cycle. Lots of people seem to swear by Emend but I couldn't have that.

I had ondansetron with my infusion and between that and the steroids that was my best day of the cycle, frustratingly. The nausea would start that evening. I managed to keep it so I only actually threw up a few times each cycle though. I was on domperidone permanently (think they're less keen to use this long term now), then I had cyclizine, metoclopramide, prochlorperazine and ondansetron to take as needed.

I still take cyclizine now when I have nausea and it usually sorts it. I find that if I leave it too long between the onset of the nausea and taking the tablet then I will usually throw it up, but I don't know if I would throw up anyway or the tablet triggers it. I always carry a salty snack in my handbag (at the mo, mini Ritz crackers) as I find my stomach sometimes feels suddenly empty, so if I don't eat I would feel sick.

I also had some seasickness bands, which seemed to help. I don't like ginger much, but I found the Lotus caramelised biscuits (speculoos biscuits) helped a bit with nausea too. I used to keep sachets of those in my handbag, coat pockets and hidden around the house, car etc.

Sorry that was a bit rambly and I feel like I might've said this before either way, I hope you feel less grim soon

Wah, just typed a long post and it disappeared!

I am meeting my oncologist today, and having a further MRI on my spine tomorrow and am very worried about both. We're going away this weekend but then next week will be MRI results and chemo starting so there's a lot ahead and I feel small and scared of how I will cope. I wish I felt stronger I am just terrified of mets on my spine and the outlook and future changing for the worse.

My distraction techniques have been mainly successful but it's hard to keep my head together. I am writing a daily list of 10 good things to try to keep me thinking about the positives - did anyone else do that? I also saw the psychologist at the hospital who was very very good. On top of this I am not sleeping at all well, always up at 3am panicking.

Marshy - I've been thinking of you since you have waved your DD off on her adventure. And minty, sending you lots of anti-nausea vibes: 3 rounds down, you sound like you're doing amazingly.

Oh blimey! Me too re losing a long post!

Elporto, just checking in to give you a big hug and hand holding plus every good vibe I can muster for a good outcome for you next week. It's horrible to feel so frightened but you won't always feel like this. Hang on in there.

Dd has been in touch quite a bit from Marrakesh and seems to be enjoying it and getting stuck in to the voluntary work. She slept on the roof the last two nights as it's so hot. Heating on here last night! I'm just going to start tidying her room now.

See you later

Morning all. Thanks everyone for the advice on driving. Marshy- interesting about the arms not above shoulder height. Haven't been told that yet. I may need to move some things around in my cupboards.

Minty- totally sympathise with the nausea. I tried lots of different drugs. Once I changed the type of chemo it did get a bit better. I now only feel sick occasionally but that seems to be lessening. Good advice from rahrah there.

Elporto hope it goes ok today.

I was supposed to be having a surgical appointment and my next Herceptin injection today but ds woke up at 5.00 being sick so that put a stop to that. He's now hungry though so feeling better. Fingers crossed I don't get it!

Hello all, the hand holding and good wishes obviously paid off as I had a really good meeting with my oncologist this afternoon. I will be starting on 6 cycles of FEC-T beginning next Tuesday, she was very reassuring and practical with her advice and I feel a lot better. She has also put me on antidepressants which I am glad of, I think I have been waiting for someone to suggest them to me, which she did wholeheartedly. Maybe it's not ideal but I do need help in managing my huge ups and downs. She was also extremely dismissive of my coccyx pain, saying she would be very surprised if anything were to come up as (in her words) 'you have had every scan and test in the book' - this is hugely reassuring.

Tomorrow I have the MRI on my spine anyway, and then we go away for the weekend.

Hope everyone else has had a good day too and lovely weekends ahead.

So pleased to hear all that elporto. Your doctor sounds like a star. Embrace the ADs. They will help you through this really tough patch and we all need a little help now and then.

I hope you have a lovely weekend.

Thinking of minty and buns, feeling yuck and hope you have avoided the sick bug speedy and that ds is feeling better. Seems to be quite a bit of it around at the moment. I'm tempted to wear a mask as would be gutted if I had to miss my op.

Dds room looks lovely. She sent me a WhatsApp of the call to prayer in Marrakesh tonight - very evocative.

Have a good evening all x