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

[BetsyBoop]

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

Glad you got through your I rest chemo ok mummy I can remember sitting there waiting to feel odd!

Welcome honey the whole treatment thing is long boring, and some of it rather unpleasant but its doable.

Unveiling after surgery last week, good results, even my bcn was impressed but surgeon said I had excellent muscles and plenty of boob to work with. Hopefully will start to fill the implant in a couple of weeks.

Still got the drains in :-(

Oh yes and it wasn't swelling .... It was fatness!!

Hello everyone
I am v tired and so many drugs make me forget n get muddled. Can't remember whether I told you all thy mine turned out to be a low grade sarcoma. Removed successfully they think as clear margins.
I'm tired.
Really tired.
But really grateful.

It's been v intense and my emotions and body haven't yet caught up with the medical facts.
If I'm taken out for 1-2 hours (usually medical appointment), the next day is a day I can barely leave my bed.
I've one lesson to teach at 4.30 (easy) and would like to have someone help me take photos of things to sell on Ebay. But may get as far as taking a few photos. Can't even get stuff in n out of garage. Feel bad to moan as please gd, things will get better.
Have to have another CT of my chest with an iodine injection soon. Why? Wish they'd tell me. Where will they inject? Should b used to it all but I hate it. Feels like I've so many medical calls to make each day.
I'm trying to cut down on my painkillers. Getting guidance from the hospital, thankfully. Today is the first day I've felt the old pain hinting.
Doing well really though.
Hope you all have a pain free evening. Xxx

Hi malt - I didn't get a blood test this time, but I will have one the day before each of the next scheduled treatments to check the white blood cell levels. Supposedly I can get a massage or other treatment whilst waiting for the results, but when I rang to make an appointment there weren't any available.

I was told to expect my hair to start falling out after 2 weeks. I still haven't got scarves or wigs sorted out so the pressure is now on. The scarf/wig ladies at the hospital didn't come in to see me yesterday (yesterday was a bit of a shambles really) and are fully booked for next Tuesday. Starting to panic slightly! I have been recommended to go to some place in Namur which is about 60km away so that is set up for Saturday.

Cross posted with goodness (got distracted mid-type and had to help dh with stuffing envelopes for various insurance companies). I just wanted to say, take good care of yourself. I hope you get a good night's sleep and I hope it makes a difference!

Updating up thread there was a link by Betsy to hat suppliers. One I used was handybands by Seasalt. I haven't tried them yet but they feel lovely and soft so hopefully will be comfortable. I'm on day 9 of chemo so my hair is still firmly on my head!

Morning

Foo foo you do make me laugh, fatness not swelling ! I'm the same trying and failing to lose weight. Had 2 male radiographers and 1 lady looking and feeling my saggy body yesterday

Updating good luck with the scarves and wigs. I was a wig lady didn't go out without it from august to jan !

Wren I'm also shocked when I see myself in the mirror with short hair

Love to all have a good day,mine is looking like sainsburys, rads, nice meal out with dh

Foo - I've just caught up with your swelling/fatness situation . If it's any help my TE was always much more round into my armpit than my own boob so maybe it's not all fatness!! Now it has been replaced with an implant it is not in my armpit so much. Good to hear you have good results.

Hi! Everyone. Not ignoring you all. Just let my youngest take my laptop to his grandparents at half term and I find writing long posts on a kindle a bit of a pain.

Thanks to everyone's kind words and advice especially updatin malt and wren. Questions keep popping into my head. DP and I really really wanted a bit of a break before chemo starts although unfortunately he's booked up workwise until the 8th March. I know we can't go abroad anywhere so looking at a few days in the Lakes. However suspect I will have had my first chemo by that point.

I know everyone is different but wondering after the first chemo were the side effects immediate? Is it going to be feasible/worthwhile thinking of doing anything in that first week.

How many of you have tried the ice cap to prevent hair loss??? In all honesty I think I'm more concerned about losing my eyebrows??? Is that likely? Do you also lose eyelashes??? Nurse said I may lose my nails too???!!!

I am finding the loss of control over this situation the most unsettling thing really. I remember feeling very tearful because all the nurses kept calling me 'dearie' and 'petal' like I was about 90! Also feeling very tearful about everything. Managed to keep it together when they told me I should have Chemo but burst into hysterical sobbing when the consultant refused to give me a sick note (saying it wasn't down to her) and I had to go to my GP despite the fact I should have been issued with a sicknote by the hospital on the day of my lumpectomy and they forgot. Consultant looked at me like I was a creature from a different planet but McMillan nurse was lovely and grasped the situation immediately.

Will be talking to the boys nearer the time when I actually get some dates. Don't want them worrying unnecessarily until I have some sort of time scale.

I know just what you mean about control, feline. The things that have helped me have been taking a bit of control of my diet (healthier) and arranging some complementary therapies. But being underway with the chemo has been helpful too as, bizarrely, it feels like positive action.

I'm not particularly typical, but I couldn't have travelled on week one after chemo (FEC). Too nauseous - my side effects came on quick and were worst at the beginning. A whole heap better now I've reached week 3.

Feline rest assured what you're feeling is all normal, it's so much to take in

At the beginning of chemo I was fine after a week and did go away for the weekend, but I was quite lucky in terms of side effects and the trouble is you won't really know how you are going to be till you start. So personally I would keep a weekend free but not book anything yet

I used the cold cap but did lose most of my hair, I'm still glad I used it as I didn't lose it all and it has grown back quickly. The eyebrows are not too bad as you can draw them in, lashes are less easy though everyone said they didn't notice I'd lost mine ( maybe they were being kind !) I started wearing a lot more makeup during chemo, get yourself booked on a look good feel better session which will do wonders for your confidence.

I didn't lose any nails, they went a bit thick and ridgy but nothing drastic

All of these things are awful to deal with but they are only temporary. I finished chemo in November and now all of my hair is back, including hairy legs and pits I could do without ! My hair is short and I would never have chosen it like this but it will grow.

The loss of control is horrible feline and it's one of the hardest things I've had to get used to. I found it really hard before chemo started because I was so scared of how I would feel and how I would cope. I don't have a lump so my chemo is different (blood cancer). Though I have no control at all I feel better now it's started. I've been lucky as I've not felt nauseous at all so far (9 days of chemo so far, 19 doses and 4 more to go). I made it clear to the consultant that I am prone to nausea (very sick throughout pregnancy and can't have pre-med before any operation as it makes me so sick). He's prescribed three different anti-sickness meds which are working wonderfully.

I thought I felt ok and not too tired but then today decided to change my duvet cover on my bed. Just doing that left me feeling as if I was going to pass out. Made me realise that sitting here doing nothing isn't such a bad thing!

Feline, with my fingers firmly in contact with the wooden table, I have to say that my side effects have not been bad so far. In fact, I have been at work for the two days after chemo and expect to go in again tomorrow. I will be sensible and work from home next week when white blood cells are due to be low. I have been taking notes to remind myself for the next cycle:

day 1 - mild nausea on the evening followed by broken sleep and some unexpected spotting;
day 2 - tired and constipated (!), slept better;
day 3 - mildly tired (although that could have been down to the training session at work!) and some mild reflux.

I think I might be unusual in having such mild SEs and I am expecting things to get gradually worse with each cycle. I am generally not ill, don't get travel sick, didn't get sick during pregnancy etc. In fact, apart from having cancer, I'm in excellent health! I was given Emend and Medrol to take for the first 3 days, with back up Litican, Motilium instant and Primperan in case they don't work.

Thank you pickle, I have looked at the handybands. I'm a bit wary about buying clothing over the internet as returning things which don't work can be prohibitively expensive from here. If I don't get something at least on Saturday, then I will have to risk it!

Thanks everyone. I feel exhausted now but that is down to really bad insomnia. I wake at 4am and that's it! I am back at work though until the chemo starts which has helped as it has taken my mind off things. Unfortunately yesterday I was on a course and really struggled to keep my eyes open!

You are right Wren I am trying to take control where I can. Diet definitely. This is helped by DP who is firmly convinced the rise in cancer in the West is down to eating too much processed food.

Also exercise. It certainly got me through my break-up and recent things I've read suggest doing yoga throughout chemo and help significantly. They are asking for volunteers at my hospital looking at the effects of gentle exercise on those people going through chemo which I am looking into.

Iit is difficult because at the moment I feel so well. It's a difficult decision to know you're signing up for something which is going to make you fell s**t for the next six months when you feel so well now...

Surely they can prescribe something for the nausea? There should be no reason to feel sick with the range of anti sickness meds available. Apart from tiredness because chemo has sent my blood counts through the floor the only horrible side effect I have currently is rather aggressive diarrhoea. The hospital want a sample but the restrictions they've stipulated make it impossible to comply!

Well the nausea well and truly kicked in last night, hardly slept a wink. Trying to eat little and often but it's a bit of a struggle.

I felt the same Felin feeling well and wondering if I really needed chemo - but of course when it's highly recommended by the professionals you've just got to get on with it. Belt and Braces!

feline everyone reacts to chemo differently so wait and see. I was pretty good for first 4 rounds but 5&6 took a bit of getting over. I worked through chemo but just dd 4 hours and mostly from home. I kept my hair until 2 weeks after I finished all my chemo when it decided to all out then!

So ts different fr everyone so anticipate the worst and hopefully it might not be that bad.

Morning :)

How's everyone today ?

I webs out for a lovely meal with dh last night. Making the most of our freedom as the kids are back later. Can't wait to see them :)

Morning everyone & thanks for your welcome posts

My op's been cancelled today - surgeon not feeling too well!! Has been rescheduled for tues at a different hospital aghhhh just want to get it over with.

Am struggling with not being in control too - still no nearer knowing what chemo etc I will be having, haven't seen an oncologist yet even though was diagnosed on 2 January & op on 22nd - bcn really good not so sure about surgeon.........

Glad you had a good meal out malt, what a good way to use the time.

You must be crawling up walls, honeybear. So frustrating to have the op postponed when you're all geared up to go. I didn't see my oncologist until a couple of weeks after my first op, and was much more under the surgeon's care until the surgery was over. But you do need to know!

feline do you know if your chemo will be spaced 3 weeks apart? If so, the time you will be feeling best will be that third week. That is the week I try plan all my outings and trips. Generally from end of week two I feel 'well' again.

You will have periods of hopefully at least a week each cycle where you feel fine. There will be a pattern each cycle, so keep a diary of your symptoms and it will give you general idea on what to expect in coming cycles. The SE are different for each type of chemo, so if you are on FEC/Tac, SE for Tax will be different than for FEC.

I've done 6 chemo now with 2 remaining. It has been quite manageable. But I can't wait to be finished!!

BTW, I generally feel fine on week 2 also, but immune system is low that week, so I try to keep away from crowds.

Very late morning. My blood counts are through the floor which means I need a blood transfusion. Not a surprise as I was borderline yesterday - 81 when threshold for transfusion is 80 and my count goes down everyday. Did they order the units yesterday for today? Of course not as that would require being organised. Instead I'm left bedridden, unable to eat and when I need to go to the loo I have to move so slowly its like I'm moonwalking. I am so severely anaemic that if I stand up everything starts spinning and I fall over. I made it to the loo this morning, sat down and fell off I was so giddy. Just pisses me off that I could have had a transfusion by now and be able to sit up.

Sorry for the rant. Just hope today is the worst day

As if that wasn't enough the horrible nurse from my first night here is back. I haven't seen her since my first night. She came in to give me my meds and I explained that I couldn't actually sit up to take them. She raised the head end on my bed and practically threw the tablets at me and gave me no water to take them. I had to ask, spilt it over myself, no offer of a towel to dry it and she then left me sitting up. Fortunately the student nurse who was with her stayed behind and gave me the bed controls and the bell (both of which the horrible nurse had left on the floor out of my reach).

pickle , that is the absolute pits. I'm so sorry you should have to cope with behaviour like that when you are so vulnerable. Makes me so cross. I hope they now have their act together on the blood transfusion, so that it happens as soon as possible. Good on the student nurse for being a bit more human than her colleague.