**Tamoxigang Thread 52** With virtual tea, cakes and chat for all with cancer concerns

[Lilymaid]

We were almost at our 1000 post limit for Thread 51 - hope the title is OK but wanted people to know that we aren't just about people on Tamoxifen but for all with cancer concerns!

Morning all.

Mrs- sorry that your family is having such a difficult time. Things just aren't fair sometimes! Hope the mammo goes ok.

River- my periods came back after chemo; took nearly a year though. I think scans are normal. I got asked if they were regular but have only had one so can't tell yet.

Boobz- glad you can fly between. I had a lovely wig but was more comfortable in scarves most of the time. I learnt lots of different ways to tie them. It just depends on what you feel most comfortable in. Another vote for the Feel Good workshops- really enjoyed it. I actually kept my eyebrows and eyelashes ( and nose hair!) during FEC but then when starting tax they fell out but my hair started growing back.

Chesty that's great news.

Fifi- this is the place to come on and moan. It's such a draining process. I remember sobbing at a line care appointment because I felt so awful. I had a mindfulness cd which did help, although I often fell asleep before the end; but then that did help as well.

Need the sunshine. I had a surgical bra that I got in a small bra shop but there are lots of options on line. I did have a sports bra but I had to get several sizes bigger. Make sure it opens up at the front.

I had an oncologist appointment this week and was expecting to hear that they were definitely ruling out any more Herceptin but instead got told my heart function had gone up again. There was then a discussion about weighing up between getting a decent dose of Herceptin in (I've had four) versus permanent heart damage. The oncologist was keen to try at least two more but said the cardiologist had said I could have it but to be aware that there was a risk. She then booked me in to have it the next day so I did feel there wasn't a lot of thinking time. I have asked to see the cardiologist soon as I also got told my heart tablets are long term which I didn't realise and I haven't seen him since July. I also have a large slightly red patch on my thigh this time where injection went in- I normally get a bruise but not a patch this big. Anybody else get this if they have had Herceptin?

Sorry, big essay there. Not sure if I am doing the right thing by having more....

On another note. Has anybody heard from Amber lately. Was just wondering- hoping you are ok Amber? Hopefully just very busy with life.

Have a good weekend all. Hugs to those in the middle of treatment.

Hi - not here much, you're right - but I think I'm OK thanks. Just had my four year checkup with a new Onc, who frankly was scarier than a scary thing...and managed to frighten me half to death. I had to talk to Mrs BCN afterwards to find out what he meant. Seems he was completely happy, but had just phrased it in a way that convinced me it was back
And then I forgot to ask him about something else, and don't think I trust him to communicate well with me. So pondering what to do.
Other than that, all good.
Sending love to all.

Lovely to see you Amber. Sorry your onc was not very good at communicating. Is there an option for someone else? Maybe if you tell your BCN she can get you swapped.

Hi speedy just saw your post like amber im not here much but have only two herceptin to go ..i always have a big red patch about 5cms round it last about five days before it fades .Hope that helps .

This is the new Big Chief. So I think she can't swap him. I think I will have to train him instead. Just wish I didn't have to train every single one of them individually grrrr.
Mildmay, only two Herceptin left? Excellent.

Just a quick reply to speedy with regards to herceptin whilst I'm doing dinner. I usually get a bright red reaction on my leg as soon as they start injecting me (about5 or 6cm in diameter) and it seems to swell up for a few hours. Then I get a pinkish painless bruise of about 10x20cm or so for the next 4 or 5 days. The main reactions I seem to have is a headache/head rush feeling (as if I've had too much caffeine) on the day and then an upset tummy for 2-3 days. I pretty much ache most days now but aches and pains can also be an effect of herceptin for a few days. I can't work out though if I'm any more stiff than usual.

I've just had my 9th dose so half way :). Let's hope your heart can cope with a couple more

Thanks you for your replies. Its reassuring to hear other people's stories.

Hope everyone is okay.

Amber, I hope you have some luck with the oncologist. Thank goodness for the nurses, though my onc has been ok so far.

Speedy, is Herceptin known to be bad for your heart? :/ I also think that you should've been given more thinking time.

I was told by my onc that next I will see a BCN and then be starting chemo next week. I got a letter yest that says I have another onc appt instead, in 2 weeks time. Not sure what's going on there. I think I will phone my BCN tomorrow.

Have a good Sunday everyone.

Thanks Mild and Minty. Glad to know the red mark is normal. I felt a bit weird for half a day after and am sure I didn't last time but then I wasn't trying to work as well. Mild- two to go sounds good.

Amber- hope the 'training up' goes well. A pain to have to do it though!

Hotchoc- Herceptin can be a bit rough on your heart but they monitor you carefully. I was just unfortunate that the chemo had been a bit rough on it so I was at a low level before they started Herceptin. The tablets I take helped it get back to normal but each dose can make it go back down again. Most people are absolutely fine.

I would phone your BCN to find out what is happening with your appointments.

Happ Sunday all

My ds was born in this house 18 years ago today, at 10.05 am. It was a Saturday. My mum and my dd, who was just a baby herself at 20 months, met him when he was 15 minutes old.

I can't believe where the time has gone. He was a lovely baby and is a wonderful young man. I feel sad and happy today.

Dd has come home from uni for his birthday. Lovely to see her. We are going out for Sunday lunch. Yesterday I made the most enormous lemon meringue pie which he requested instead of a birthday cake.

Wishing everyone a happy day and a special wave to Amber to whom I will always be grateful for calming my fears and making me laugh when I was at my most irrational and frightened. Good to hear you are ok Amber.

Happy birthday to your ds Marshy.
Hope you had a lovely lunch.

Happy birthday to your DS, Marshy. So he will be able to vote in the election ... And presume he has the joys of A2s coming up. Hopefully my DS2 is about to do his last exams ever in May for his MSc. The DSs have been tested and examined practically every year for the last 20 years, so DH and I will be very pleased to see the end of all that!
Any spare lemon meringue pie? ... Thought not !

Happy birthday to your DS, Marshy. How lovely that you're still in the same home. :) What a blessing children are.

Slightly squiffy on kir royale and very happy not to be changing nappies which is what I would have been doing 18 years ago!

We are having a lovely day

Hi speedy just read you are on heart tablets ,onc has put me on ramapril as heart function has dropped but did not suggest stopping herceptin.i thought these would stop sometime after herceptin but have not been told much.Have never seen a cardio but am slightly worried that i will be on them forever.Hope everyone is enjoying the sunshine today.

glad you're having a good day marshy . Happy birthday to your DS!

I've got a chest infection now and I'm on antibiotics. I'm worried it will delay my treatment which is due on Friday. Does anyone have any experience of this? I will finish the antibiotics on Thursday I think.

Mild- am on ramapril too, up to 10mg now. My ejection fraction started at 46% which is why I started on them and saw cardiologist. It went up to 60% at one point but after four lots had gone back down to 46. It's now up to 58 so they are going to try two more. They think I am just one of those who are susceptible. I expect you have regular echos? If it had gone down a lot they would have stopped. The onc told me about the long term thing but at the beginning the cardiologist said it would be short term I am sure.

marshy a belated happy 18th to your son. I love lemon meringue pie and am hankering after some now.

Slightly devastated to hear of peoples periods returning after a year. I was so hoping mine had gone forever (they used to be a nightmare) .... it will be a year since last chemo for me in July. Shall keep my fingers crossed.

Yes I too loveambers way with words ....,my favourite being that the likelihood of something (I forget what) was as likely as finding the pope in your ensuite!

Foo my period returned after 2 years last week. I had hoped that I was done with them too.... It arrived the same week that the cognitive effects of chemo diminished though, and these things may not be unrelated. I like having my brain back!

Hello All.
Happy Belated Birthday to Marshy's DS. needthe I got some beautiful post surgery (BMX) bras from a local shop that stocked amoena and anita bras, both available on the internet. I did have fairly small boobs though and I do remember that some of the designs didn't go very large.
Minty sorry to hear about your friend. Mrs how rubbish for your family. Please do keep us updated about acupuncture success, I have my fingers crossed for you (and me) that it makes a difference.
I remember one of my first conversations on here was seeking reassurance about the gloom and doom of the consultant who gave me my diagnosis, I laughed a lot when one of you said (might have been foofoo) that your consultant always seemed surprised that you had survived between appointments! Sounds like you have one of those, Amber.

fifi I was on antibiotics for a chest infection between Chemo sessions, it all depends on the state of your blood cells on the day, so if the drugs have done their job there won't be a need to delay your treatment.
boobz I worked (remotely and reduced responsibilities) for 2 weeks out of 3 during chemo. This was my choice and possible due to the nature of my job (IT Manager), however, the SEs from the chemo are accumulative and so I did struggle nearer the end of the treatment and some days I did wish I hadn't made the decision not to take 6 months sick leave and just enjoy the Summer (when I could). I had 2 lovely wigs from Browns, about 150 each (like Malt's) I got 100 from NHS towards them that was sorted by Browns. I quite liked them but last Summer was so damn hot I did end up going commando all the time at home and amongst friends outside of it. AnnaBanana is excellent for scarves, and I second the vote for the pre-tied ones. I didn't lose all of my eye brows or lashes but strangely they are the last to grow back and so I have quite sparse brows (previously I could have given Cara Delevigne a run for her money) and stubby lashes.
This morning, I had my annual check up with the surgeon who performed my BMX. I was quite relieved, sitting in the waiting room that there was nothing left that could be mammogramed. Anway, he had a good grope around and was happy all was in order and I have been discharged as far as he is concerned - so that is one big tick in the box. Waiting on results from my spine MRI from last week but not expecting upsetting news.

Speedy thanks for your reply mu ejection fraction had gone down to 50 but onc did not seem that worried and im only on 1.25 of ramapril with so few to go im sure it will be ok .im having echos every three months .I hope all goes well with your next few herceptins it will be amazing to be finished with it all x

Hello all - happy birthday to Marshy's DS - I had 3 homebirths with mine too so I know how it feels when you celebrate birthdays in the very spot you had them!

Fifi I am having 4 cycles of EC followed by 12 weeks of Taxol with Carboplatin three weekly x 4.

In the last post I wrote I was about to go down to have my portacath fitted - I had it done under a local but now I wish I had opted for the sedation as it was a bit unpleasant! I look like a cyborg! But my kids think it's very cool.

On Saturday I had all my hair cut off - I started weeping almost as soon as I sat down. My hairdresser, Ian, was a DOLL though and made me feel strong even though I felt helpless. I took a pic of Michelle Williams and think he did a pretty good job (see photo of me and kids with new crop). He was aces - I am not joking, he is the HAIRDRESSER TO THE QUEEN. His Queeny hands touched both the queen's hair and my hair.

My lovely hairdresser

Anyway, that made my day. I then went on to Bobbi Brown and had a 45 minute lesson and now I finally know at the age of 35 how to do make up. I bought EVERYTHING he used on me. Including the eyebrow brush (I will soon have no eyebrows, so it was probably not the most wisest investment). I spent FIVE HUNDRED AND FIFTY POUNDS. On Bobbi Brown products, in an attempt to make me look less like I am ill in the middle of chemo when I have bags under my eyes reaching my knees, and no hair.

And now I sit in my little chemo pod at The Wellington and have had my first round. I am attempting to save my new Michelle Williams haircut so have to hang around for another hour to let this cold cap do its thing (hopefully!). Tbh I know it's probably not going to work, but it's worth trying, I think.

And then pick the kids up from my mum's tomorrow and life carries on, I expect.

Thanks to all for birthday wishes. We had a lovely day.

I've been at work the last two days and off now for 2 so that's nice and well timed as my sciatica is flippin killing me with all the driving I'm doing. Traffic was grim this morning.

Looking forward to a relaxing time now, though I do have to go for my pelvic scan tomorrow early afternoon so no doubt I'll tense up a bit when the wand is inserted Hoping for nothing unpleasant discovered....

Boobz what a lovely photo. Dead impressed with the credentials of your hairdresser and somewhat relieved that he didn't give you the same 'do' as his royal client Hang on in there. You will get through it all, as the ladies on this thread will confirm.

And as for the make up, well of you can afford it and it makes you feel good then why the hell not and feel free to donate to me anything you find you don't need

Hugs for everyone and thinking of you all as always

Fab photo Boobz.
Hope the chemo treats you relatively kindly. You will get through it.

Marshy hope scan goes well tomorrow.

Night all, shattered here.

Night speedy, sleep well