The Lacies are back for cancer support thread 56 - all welcome!

[WhatWouldLeslieKnopeDo]

Hello again, and welcome to our 56th thread. Some of us have been here ages and others have just joined. I hope you've all made it safely over to the new thread.

An extra special welcome to anyone who is lurking and feeling a bit shy. We are all quite friendly and we definitely don't bite, so please do say hello if you'd like to.

All are welcome here. We started off as a breast cancer support thread many years back, but all cancer types are welcome and at any point in the "journey", even if you haven't yet been diagnosed. We have all had different experiences but there's almost certainly someone here who will understand how you are feeling.

Our previous thread is here.

I have started the new thread a little early, and I will explain why in a moment.

Hi Janaus. I agree your cousin is very lucky to have you. Everything Tutti listed above is fine but if I may add if she is into comedy something funny to watch..perhaps DVDS? Some energy bars. Some luscious naturally scented( maybe even organic) body soap for showers.
I am sure others will have more ideas.

Thank you for the ideas.

Trying to catch up with everyone's news but the thread seems to have been pretty busy recently. leslie hope your treatment is going well and the se's aren't being a pain. chewing congratulations on escaping, don't blame you. Tutti hope you stay pain free till you can get it checked out.
Apologies to anyone I've missed and welcome to the newbies, sorry you've joined us but hopefully you won't need to stay.
I saw my onc last week and my side effects from tamoxifen have meant that I was told to stop taking them immediately and that they will look at other options which seem to include surgery to remove my ovaries!! Also possibly Zoladex injections and then letrozole, has anyone had experience of either of these options as googling throws up lots of horror stories so it would be good to know if they're true! The final option is cross my fingers and do nothing but I'm not sure I can go for that just yet. Part of me wants to say thats it no more pills but the logical side says I need to do everything I can to protect myself.My onc did say its about 3-4% difference in doing nothing or surgery or injections and pills so any opinions, experiences or alternatives welcome. I've got a couple of weeks to decide apparently.

That's a really complex choice to have to make Rover. I have no experience of any of these options, as I'm not at these treatment points at the moment (haven't even got full histology yet).

For what it's worth however, in my opinion, 3-4% is not an insignificant percentage and I would be inclined to persue further treatment.

But it's got to be a tough choice when you're weary and tired of treatment.

Evening all, rovercat those are the options I'm looking at. My cancer is lobular and the letrozole gives the marginal improvement in odds over tamoxifen but you have to be post menopausal for it. So if the chemo and tamoxifen haven't triggered a menopause I need ovarian suppression to get to that point. I'm on tamoxifen in the meantime.
I think my hormone tests will be in Dec, can I ask about your tamoxifen side effects?? I mainly have hot flushes, but they are truly miserable (kind of physically throbbing with heat rather than just sweating).
I am tempted to go for the oophorectomy rather than Zoladex because I think I would rather just get it over and done with instead of monthly injections. To be fair they flagged this up from day 1 of my final results so I've had a while to get my head round it. It's fear of the unknown again, no idea what the SEs of letrozole will be but they sound as unpleasant as all the others.... and how much worse can the immediate menopause the oophorectomy brings be than the menopausal symptoms I'm having now.
I guess there's always the option to try the Zoladex first, see how that goes then have the op if it's necessary at a later date?

Hi Pepper as you suggest I'm slightly leaning towards the zoladex injections to see what happens and then surgery as a last resort. Main reason for this I think is that I can always stop having the injections but surgery is final (if that makes sense). Tamoxifen side effects were horrible and although they've lessened massively they are definately still there, in no particular order, hot flushes intense and frequently throughout the the day and night, waves of nausea similar to morning sickness, lightheaded and dizzy again at random times. Deep aching pain where my lump was removed, palpitations, large mouth ulcers. Then the mental stuff really kicked in at about 7-8 weeks, insomnia - sleeping about 3 hours a night so completely shattered, anxiety so bad I didn't want to leave the house, depression that came on over about 3 days and I went from being quite normal and happy to a sobbing negative mess. Memory loss and confusion which I think really decided my onc as I was half way through a sentence and couldn't remember even what we'd been discussing! I had no idea if I'd taken my medication and I couldn't even watch television as I couldn't longer follow the plot. The memory loss and confusion were the most frightening as they were getting worse and I can only imagine how terrifying it is for people with early stage dementia as it must be similar, I lost all memory of what day and time it was and couldn't follow conversations unless they were incredibly simple. This has most sorted itself out in the last couple of days although my spelling and grammar are still pretty shaky and I occasionally have memory lapses but at least its occasional and not all the time. My onc said (and thank goodness DH was there as I don't remember much of the appointment) that 1-2% of people get memory loss and confusion, unfortunately I'm one of them . I've had some bloods taken to see whether I'm still premenopausal but I think whatever its safe to say that Tamoxifen and I don't agree!

Bloody hell rover you poor thing! That sounds horrific good they've stopped the Tamoxifen and I hope you are able to reach a decision you are happy (ish!) with

pepper sorry that you're struggling too

Tutti has the bleeding stopped? Definitely worth getting it checked

chewing enjoy your holiday!

mrsrhod I hope DD is on the mend and that you were able to go on holiday

I've had a rough few days but hopefully on the mend now. I'm seeing my surgeon this morning so I'm hoping he will have some ideas for my stomach problems. I feel so drained at the moment. Then CT scan this afternoon.

I've cut my hair very short as my bald patch was getting huge. Lots of friends looked quite chic with short hair. I look like Mrs Potato Head

Waving to everyone I've missed. Have a good day!

Hello lacies. Leslie so sorry you haven't been feeling well and glad you are on the mend. I bet you actually look really cool and are just very humble about it
Mrshow is your DD?
tuttihow are you now? Hope the bleeding has stopped?
rover, you deserve a break! Hope you manage to move on to something less problematic.
Waving to everybody else.

Rover early onset signs of dementia are absolutely cruel. You must have been terrified. Let's hope the alternatives down't come with such a high price.
Leslie, have you seen those top models walking the cat walk at the top fashion shows. Mrs Potato Head is a look that's definitely in this year. Hoping you'll feel better so that you can really start rocking it. Hope the scan goes well.
Mrs Hodge, hope that DD is on the mend and you are enjoying your holiday.
Tummy still very sore on the top left hand side and bit of blood, checked my appointment to put it in my cancer diary and it's actually Thursday, so just going to bury my head in the sand till then. That's a plan

Waves to everybody and hope you are all having a good enough day. Off to get my hair washed at hairdressers, can't manage it at home as it's long and the dressings are high up on the boob. Really looking forward to clean hair. Speak later.

Hello Lacies - I'm back Sending good wishes to you all.
Had a lovely time eating nice food, drinking good wine and paddling in the warm sea. It now feels really cold here after being in shorts and flip flops for the last few days.
Tutti hope your tummy feels better soon. I am really bloated at the moment and my clothes are beginning to feel a bit uncomfortable
Rover that sounds grim . Hope things improve soon for you. My cancer isn't hormone receptive so I know nothing about the drugs involved I'm afraid.
mrsrhod hope you went on holiday and that your dd is feeling better.
Leslie Mrs Potato Head is cool and she can wear a wig any time she fancies
I am moulting quite a lot again so it might not be too long before I look like a maris piper myself!

Welcome back Chewing. May I recommend the slouchy trouser ? I look about 9 months pregnant at the minute with bloating and the slouchy trouser is my new best friend.
I'm sporting the curly frazzle hairstyle at minute courtesy of my lovely hairdresser; but best of all it's clean again. Oh yes!!!! The Lacies are really rocking the full range of potato snack hairstyles this week

Can I throw my monk's tonsure hairstyle into the mix?!

tutti you can't beat clean hair for feeling good even if it's not looking quite how you like. Hope you can get through to Thursday ok and symptoms start to improve

Chewing, I've been rocking the George at Asda gathered trouser look since my operation - very comfy. So glad you had a great escape for the weekend though, sounds wonderful and much needed

leslie sorry to hear that you've had a rough few days it sounds like you're on the mend. Really hope you got your ct scan this afternoon and that your surgeon had some suggestions/answers for you

rover oh my word what a dreadful time you've been having and what a difficult position all you ER+ ladies are in. Thank goodness I don't have your decisions to make. Chemo put paid to my ovaries so I get all the hot flushes still buy not to the degree you've been getting. pepper sorry you've been having it rough too

mrs hope DD is better and has got to uni and you got away on hols

I had my heart scan today and it looks nice and healthy so no reason not to go ahead with herceptin. Had some memory flashbacks when I walked past the cancer unit at the hospital - it's starting to hit me that I'll soon be back on the chemo ward again soon

Waves to everyone, hope you're all ok

My hairstyle is completely grey, 2 cm long yes I've measured it and very flat. It doesn't look at all like a trendy short haircut because it is unstyled and I don't care if grey is fashionable now. I don't like it.

Waves to everyone.

Good morning all.
Chewing welcome back! Glad you had a good time.
Minty good news re your scan. Going through chemo again must be quite overwhelming. Best of luck.
Since we are talking all things hair..i have quite the set of tight and short curls to wrestle with now...it is like my hair has decided to conspire against me for having put it through chemo

I'm going in to hospital to have breast cancer confirmed this afternoon I'd a biopsy on a rash it came back as suspicious of Paget's disease Last Wednesday,I couldn't believe it I was there on my own,I'd another biopsy and next morning I'd an ultra sound and mammogram my sister came with me these were clear, I was delighted.I'm going back for the confirmation this afternoon and I'm devastated since last night I can't stop crying I'm so afraid I don't want my children to see me like this, I have a great husband and family and friends all supportive but they don't know how bad I really feel.

Oh bobdy have a couple of hands to hold . It is the worst of hells waiting for results .

Just breathe ,put one foot in front of the other and concentrate on getting through today ,minute by minute .

Once the results and tests are finished I promise you will feel better .

Hopefully the confirmation will be that you're clear ,but if not ,you will cope .

x

love to everyone else going through tough times .

Thinking of you today Leslie ,hang on in there .

Another hand to hold bobdylan as gingeroots says it will feel a little easier once you have the results. The not knowing is terrifying.

I had an awful night last night. Really achey from sitting around at hospital for hours and then being sick and an upset stomach. So I slept rather fitfully. Having a very lazy day today to make up for it! :)

Sorry so many are having hair woes. We sound like an attractive bunch don't we

minty good news about your heart. But can understand the flashbacks. Bloody cancer!

Waving to everyone

bobdy hello and so sorry you are having to go through this. We know how excruciatingly painful the waiting is and how it can drive you plain mad with anxiety...however. It is NOT knowing that fuels this anxiety. Once you know for sure ( and I sincerely hope it is good news!) you will at least be able to collect your thoughts. Please come on here as often as you like or need to as we have all been there. Keep those you love and trust close. I am sure they. Will want to support you till you know. Best of luck.
Leslie lots of hugs for you. Rest as much as you can today. I hope that ordeal was a one off.

Thank you for replying,I'm not going to know for another week the breast care nurse called and said the biopsy results aren't back and won't be till next week so I play waiting game I don't feel as bad now in strange sort of way better to have a definite answer than an unsure result again, I'll try and stay positive and stay on here for some support thank you.

My 39th birthday today and nearly three years since diagnosis! Seems like a long time ago! Back to work, been promoted and also have proper hair. The wee bundle who was with me when I was diagnosed is rampaging around the house and her brothers are happily at school. We've come a long way.
Hope all of you are having a happy and pain free day!

Happy birthday weebarra! Lovely to hear about your little bundle rampaging around :)

bob sorry you've got longer to wait. Definitely stick around for support here

royal I'm very good at this resting lark currently on the sofa watching Code Black, my new favourite telly programme!

Weebarra many happy returns of the day to you and congrats on the promotion! And most of all great news re the hair
Leslie, go ahead and spoil yourself!

I've decided my hair is closest to dolls hair, like a really badly looked after Girls World!

leslie I'm sorry you're having a rubbish tie, hope you feel better tomorrow.
weebarra Happy Birthday and congratulations on how well you're doing!
bobdylan how frustrating to have to wait longer, but at least you know they are being very careful and thorough with your tests, take a chair here for as long as you need it.
rovercat I hope you are feeling better day by day post tamoxifen, I have become very forgetful (I am without my phone at the mo, no idea where I left it) and actually struggled to tell the time yesterday, it was frighteningly confusing not to be able to do something so simple. I shall keep an eye on the symptoms if I remember I'm approaching 10 weeks on tamoxifen.
Waves to everyone else

Just popping by to cheer you on Lacies, especially Leslie - without wanting to appear stalker- ish I think you have the same cancer and are of similar age to my relative so I can't help but feel especially for you.

Cancer doesn't discriminate and I just wanted to give to everyone having this bugger of a disease invade their lives. Keep on keeping on!

Hi Pepper I remember girls world always wanted one and never got one! Symptoms are beginning to get better every day although the anxiety and depression are not going as quickly as I would like. The letter that came today says alternatives are going to be reviewed in 4-6 weeks so I've got a bit of time to try and work out what to do. Leslie sorry you're having a bad time of it, chemo is never great but at least if you get some decent sleep it helps. Weebarra congratulations on your birthday and promotion and I'm really looking forward to normal hair. Waving to everyone else (as I've probably forgotten lots of you, sorry!).