**Tamoxigang heading towards hearts and valentines - thread 47**

[BetsyBoop]

roses are red
violets are blue
sugar is sweet
but cakes are better

I've got 20 honey, 5 down 15 to go !

Good night all, hoping for sleep for myself and for everyone else. Pickle, hope the nurses aren't too noisy....

Morning gang, still here with 3 drains ..... Getting a bit bored of them now.

The area under my arms seems a bit swollen, has anyone else had this with bilateral mx?

Hooray for half term!

Half term over for us, boys back to school/nursery today. PILs are just back from four months travelling the world so have taken them to school while I am in bed! DD will be up soon though. Pickle, hope you had nice time with DS, you must miss him terribly.

Morning. Didn't have a good night despite having a sleeping tablet. Had last dose of one of the chemos yesterday afternoon and it was as if all the energy had drained out of me. Not sure if it was connected or whether it was a reaction to the blood transfusion (which I've had before).

Means I feel shattered today unfortunately. Ds didn't visit yesterday, not sure why he just said he didn't want to. I'm hoping he may visit today. It's a slog to get here with the floods (about an hour and a quarter each way) so I can understand his reluctance. I do need stuff brought in though (food!) so fingers crossed they come.

Even if I have no visitors I'm rarely left on my own for long. They've added to my meds today. I now I have to take tablets to stop my periods (to ensure my anaemia doesn't worsen). I was disappointed at the lack of effect of the blood transfusion so I need to be prepared for more of those. The downside of that is it causes a build up of iron around your heart and liver and if it gets too high I won't be able to have the transplant. I'm going to ask them to do a ferritin test as I'm curious to know what it is. I had it tested after my first transfusion and it was 403 (normal is under 300). Over 2000 and no transplant. I think they can reduce it but not sure how that's done.

Hope everyone else is doing ok. Big ward round today. I'm hoping we don't have a repeat of the consultant squeezing and holding my toe or I will say something this time!

Quick question about audio therapy after surgery .... Just wondering how long those with BC had radiotherapy after surgery?

Not sure where that audio came from!

Foo foo my underarm was a bit swollen after node clearance. I had to wait 2 months from surgery to rads but as you know my hospital are not the quickest ! Think it's normally about a month though to allow you to heal

Weebarra hope you enjoyed your lie in ! Lucky pils sounds fab !

Pickle sorry your ds didn't visit, hope you get some food delivered soon

My dc have just left for a few days away with grandparents, feeling sad that I'm stuck here again but I'll be ok

Foo foo, I read 'audio' and thought help, a new treatment that I've never even heard of! I'm also keen to know what the likely gap between chemo and radiotherapy is; our summer holiday is going to be full of treatment and I'm keen to know if we'll have a chance to get away.

Pickle, it all sounds really debilitating, but I still think you are doing brilliantly. Complex set of issues around managing your anaemia; I hope that all your ferritin levels sort themselves out, as that sounds like a further anxiety. When I was 8 days in hospital, my kids all separately sometimes wanted to come and sometimes wanted to opt out. Seeing me there was a bit of a complex experience for them. They were so, so relieved to have me home when it happened.

Not started rads yet, or even had my mx, but I think the thought is about 7 weeks after mx atm. Hoping to go on holiday between op and rads or else it'll be a very boring summer for the DCs.

Holding up a big spoon of Rocky Road for your Best Friend Really, yesterday must have been a tough day for you.

Goodness - that comment on your notes made me really laugh. Cheeky sods though to have put it in though.

Hope your Dad's first rads session goes smoothly Honey.

Foo - I can't help with the drains question, but I was told that there would be about 6 weeks between surgery and rads. I have just noticed that you are following the same schedule as myself and Wee (Chemo/Surgery/Rads), do you have Triple Neg like us? I am thinking of a holiday too Wee, this treatment plan seems to go on forever.

{{{Hugs}}} for Malt, it is horrible when the treatment interferes with family life. Try and plan something nice for yourself in-between the rads session and your DC will be back before you know it.

Pickle - I hope that your DS feels up to visiting you. I am sure it will lift your spirits to see him.

Wren - How are you feeling this week? When is your next chemo session?

My OH has spoilt me this weekend, he wanted to make sure my girlie lunch was extra special, so arranged for a big bouquet of flowers to be delivered to the restaurant. He also ordered a magnum of champagne for the table, as a thank you to my friends for all the support they have given me - what a sweetheart. The girls also made a fuss of me, so I am feeling very loved.

Tiny what a lovely dh you have.

malt it's hard when you can't do what you want to do but hopefully it won't be for long.

Goodness your posts and messages make me laugh, sorry I'm not so good at responding.

really I hope you are doing ok.

I felt really rough this morning but feel a bit better now. Ds visited with my mum and brought much needed supplies. I think I will survive on M&S sandwiches as I really am struggling with the food. Breakfast is good but it's all downhill after that. I don't understand why it is the same menu choice every day. At ds's school they have a rolling 4 week menu. Even a rolling 2 week menu would help.

Ds says he hates visiting but I've persuaded him to come on Thursday to help me choose a wig. The wig lady came today but said she was happy to come back. I'm hoping that helping me choose a wig may help ds to feel he has some control/choice about what is happening to me.

I've now had 13 doses and 10 more to go. Blood counts are going down rapidly. Platelets were 136 last week (I think over 200 is normal but don't quote me) yesterday they were 87. Haven't had today's results yet. Means I bleed ridiculously easily and made a mess of my PJs when the tiniest scab came off in the night.

Not seen the ward round doctors today which is odd but I suppose they decided from my notes that they don't need to see me, which must be a good thing.

pickle I got a lovely wig but it just felt a bit odd, worn it twice for an hour.

tiny no I'm not triple negative, I am her2 - but ER 5 and PR 8

foo the "loaf of bread" in your armpit feeling is normal and can last a while. Mine is fine now on the non-BC side but I still feel it a little on the BC side, although it is way better than it was. (my box was 11/11/13) My hospital ain't a minimum of 6weeks after surgery for rads to make sure you are totally healed (if not rads would be delayed further)

I'm here to amuse. If I can't bring a smile to an otherwise on-n-off miserable time, gd help is all!
Lol
Put in a repeat prescription today at the doctor's.
12 items.
Beat dat!

Been to nunny doctor to learn how to use my new machine. My primary objective has to be to keep it out of the reach (even when using Cinderella loo-reach step) of my electricity mad 6 year old DS. Challenges, challenges.

hello Betsy - how did you manage last week? I did next to nothing on Friday as was so tired and am not any better today (WFH today). Are you on half-term this week? I am back to client site tomorrow and have a 9am meeting so no chance of a sneaky lie in even though the kids are off school .
I am sticking with my exercise though - going to the gym every other day - before work when I am working locally .

Tiny - I think having chemo before surgery is generally due to the size of the tumour not whether it is TN (although as you know TN will usually respond better). I had chemo first for my ER+ lump as it was thought to be 6cm (it wasn't but hey ho!!).

Hi kitkat yes half term this week, so one week back and then a week off, can't be bad I was surprised how tired I was too. Good for you re the gym, I did the shred twice last week, was aiming for three times but hey ho (did lots of school run walking) Yesterday when walking back up the cliff steps (over 200 I think) I realised just how unfit I am, but it was very good exercise!

I am sticking with exactly the same routine each time Betsy but my legs are getting stronger so I can put more effort in and raise my heart rate a bit more so I am definitely improving. Also my clothes are looser and I have lost a few pounds (and maybe some toning up or is it too soon for that??). i woudl like to get to 4 times a week but at the moment I can't do consecutive days.
How are you getting on with your Tamoxifen? I have done 4 weeks now and no side effects except the hot flushes - but I had them anyway from the Tax and they are no worse. But what i would give for a good nights sleep .

Pickle - Hopefully the more times your DS comes to visit, the more confident he will feel about the situation. Is it possible to time his visits so he doesn't see you hooked up to anything, just sitting on your bed or chair? I wore my wig for the first time this weekend, my friends were impressed with how realistic it looks, but I have to say, I couldn't wait to get it off my heads after a few hours. I am definitely more of a headscarf/hat person.

KitKat and Foo - I was getting worried that everyone else seemed to be having their treatment in a different order to me. The only thing that stopped me getting too paranoid was the fact that Wee had the same BC and the same treatment. I hadn't considered it was due to lump size, but that is what it must be, as they want to shrink it so they can do breast conserving surgery. This will all be out the window if I test positive for the BRCA gene, as I will prob have a MX. Do you know what size is considered a large lump?

KitKat and Betsy - Gym and The Shred, as well as working! You two both need a nice sit down and a ! Good to hear all is going well! x

Tiny - 'a large lump' is defined differently for different purposes - so for staging greater than 2cm takes you stage 2 (even if no node involvement) and in my area greater than 3 cms means you get a full body CT scan. As far as trying to srink the lump so that you can have breast conserving surgery it is dependant on the size of the lump compared to the breast - so no hard and fast rule.
I kept being told that my lump was 'huge' (estimated at 6cms) which did nothing to help the situation .

Hi all, I haven't been on for a few a days and the thread moves on 7 pages! Hope everyone who isn't feeling too good at the moment feel better soon.

My wig appointment last week was quite fun. So they will now get two in my hair colour from which I'll choose one lovely nhs wig! I'll go elsewhere as well at some point to see what else is available.

Chemo was scheduled for this Wednesday, but has been put back two weeks because my blood test came back with bilirubin being high. I had mentally prepared myself for things to start this week and I'm not sure how I'm feeling right now. Somehow need to get the bilirubin down.

tiny, I'm glad you had such a good time with your friends. And how lovely of your DH. I'm feeling good this week, thanks. The nausea has gone, and i just have odd things cropping up like a squeezing chest - but it doesn't seem to be worrying the doctors, so I'm happy with that. Next chemo on 27th.

kitkat, really impressive routine! Good to hear you building fitness so soon after chemo. I can just imagine the oncologists talking about your huge lump. Frankly, I think some of them could do with some training in communications skills.

pickle, how tough for you and your son. I hope the wig idea works well as a way of drawing him in.

And I'm 50 in 3 week's time. Just can't get my head into gear for celebrating it, but I have to mark it somehow for the children. One idea suggested to me is just to hijack the whole year and have lots of small occasions. It might not suit dd's idea of a proper party, but it makes a bit more emotional sense for me.

It'snotonlythegoodbits , I meant to say what a complete pain about the delay in your chemo. Did they go you tips for reducing your bilirubin?

Wren they haven't actually told me I need to get it down. They want me to go for an ultrasound of the liver to make sure there is no underlying cause. If there is nothing to worry about I will probably be given a lower dose of chemo rather than the full whack.

I just feel that if something is a bit high surely something can be done to lower it. So far I have come across cutting out fried food - so no crisps, chips and other tasty treats. Boo. :(

Morning

Day off rads woo hoo !
Machine is being serviced

Tiny your dh sounds lovely
Kitkat don't overdo it !
Wren understand how you feel about your 50th hope you find a way to celebrate that you're happy with
Good bits what a pain about the chemo delay hope it gets sorted

I'm off to ikea later to buy lots of useful looking but unnecessary items! Will bring back some meatballs for the trolley