starting my pink road of cemo, 15th nov

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2721

Kimmie, big hugs - there will be a brighter day soon, just be kind to yourself xxxxxx

Polly - bad luck :frowning: Hope this is the last delay you have xxxx

Bacca, could you chat to a lampshade in lieu of a drip stand? Big hugs, hope you feel a lot brighter soon xxx

Hellooo to everyone else! Reeb, Iā€™ll email you on PP soon, and whenever I hear another one worthy of poss. inclusion - think the book would be a fab idea. Donā€™t mind having a stab at cartoons either, along with Suzy - Iā€™m sure between us all weā€™ll come up with something for you!!

Sophie x

2722

I saw onc. today - asked about delaying TAX2 for Crufts - no problem whatsoever, in fact, she thought it was good that I had something I really wanted to do to look forward to. Will have that lot of chemo on following Mon or Tues instead. So, for anyone else wanting a delay (Millykins? It was you with the wedding, wasnā€™t it?), then itā€™s def. worth asking!! Good for our mental health, obviously!

All bloods were fine, so FEC2 tomorrow as planned. Have slept all right since first lot, up until this week, when I am just too hot and restless to sleep properly - prob. the thought of the next one keeping me awake. Really not looking forward to tomorrow, but itā€™ll be another one down. Told onc. about how flat I fell on days 4,5 and 6, and she thinks it might be due to the dex - apparently some bodies get lazy fast (see, I knew this young and fit thing wouldnā€™t lastā€¦ Iā€™m back to lazy again!), and then when the steroids stop, you nosedive. So this time, instead of 3 days of 3 doses, Iā€™ll be doing 3, 3, 2 and then 1, and hopefully by coming off it slower over four days, I wonā€™t be so wiped out again. Fingers crossed! Sheā€™s also giving me two different mouthwashes to try to combat disgusting mouth.

I asked if I could have a copy of my path report, and she printed it off immediately, and then took the time to go through every bit of it with me - well impressed with her!! Did find out that the tumour had vascular involvement, which is not great, but again, another reason for having all the chemo. The one node that had a tumour in also had cancer cells in the surrounding capsule, which makes my node involvement 1+, which is interesting, as I hadnā€™t heard of that before!

Still no def. decision on rads - but sounding likely - they only got 0.9mm clear margins - which onc. doesnā€™t think is enough. Sheā€™d like a minimum of 2mm, but did say that different oncs think differently. Iā€™d rather be safe than sorry I suppose. Better too much treatment than not enough. Hey ho.

Tired now - met up with friends for coffee before onc. appt and am all latteā€™d outā€¦ quite surprised my bloods werenā€™t pure milk and caffeine!

Sophie xxx

2723

Sophie im all latteā€™d out too I went to town with mam and sister and we had a nice lunch in debenhams had a lovely day of yet more reatil therapy ha ha I think im spending my forthcoming FULL PAY woo hoo no more 1/2 pay ( ok i know its another 2 weeks away but what the heck )
Kimmie i hope you feeling better soon dont feel too down hey if youre bored you are beside me and come for a cuppa message me on pp if you want too im only at work 1/2 day mon xx big hugs .
Weena hope you ok how did today go xxx
ps heres another chemo -brain storeyā€¦ I felt something sharp sticking in the inside of my shoe a few weeks ago ( my favourite comfy shopping ones ) so thought it was a tack or something sticking through so stuck a paded sticking plaster over it untill OH could knock it down again . any way forgot about it till yesterday when it felt sharp again and said Dad have you got a little hammer to knock that nail down in my shoe ,off he went and as he looked and turned it over heres a whopping great drawing pin in the bottom ha haa hadnt the sense to look underneath and see it LOL so shoes are much more comfy and wearable if you dont have drawing pins through the bottom ā€¦ think im braindead xx

2724

Hi girls

Am back now, used cold cap and had no problems with that. Feel ok so far, just a bit headachey and fuzzy. The whole experience was fine but felt a bit upset as i was sat with two young girls my age who had secondries in the brain and spine. Both initially diagnosed 8 year ago with the primary breast cancer. It felt my worst fear was looking back at me but i dont mean that in a horrible way about them. Something you have to get used to i think.

If youve read this exact thing else where its cause ive cut and paste cause cant be bothered to type!!!

Kimmie big big hugs coming your way.

Love Deb XXX

2725

Hi Bacca

My nueropathy for FEC 2 was in left arm and both hands. Pins and needles in both hands and heavy weight feeling in arm.

FEC 3 was the same but FEC 4 spread to my feet with pins and needles. so it is getting worse at each FEC. Starts wearing off within 6 hours in feet, 12 hours in arms and right hand and a little longer for left hand.

Re- book sounds as if it is coming along well.

Suffering chemo brain today and lots of s/eā€™s.

Janvis xxx

2726

Well done Deb for first one. What a shame about those other girls you were with today.
Hope u donā€™t suffer too many SEā€™s.
Janvis sorry u are not great either.

I bet Poppyā€™s missing us.

Polly x

2727

Deb - well done on getting first one out of the way. Hope the seā€™s are kind to you xxxx

Must have been very hard to go through your first chemo faced with the horrid reality of bc - just hang on to the thought that we are going through this poison NOW in order to give us the very best chances of NOT having secondaries.

And also remember - even with secondaries, life expectancy can be very much longer and better than we prob. imagine.

Sophie xxx

2728

Hi girlies
After a couple of days of feeling very sorry for myself (who knows why?) feeling tip top today, just in time for FEC3 tomorrow - as I still have the cough and cold I have had since before FEC2, hoping bloods will be OK - only done on the morning of chemo.

Had my return to work interview today, will be going back three days a week 9.30-2.30 after a week off after treatment for each chemo cycle - was dreading it, as the email was very formal and tone quite prescriptive - just the opposite to all the conversations I have had when I have popped in. Anyway, just proves how the wrong tone can come across in the written word. They couldnā€™t have been more supportive, if they had tried, even to giving me a disabled parking space right outside the building (our work car park is a nightmare for all sorts of reasons).

Feeling so much more positive, brain will get a work out for the first time in 3 months and because I had just started the job, am on SSP only, some real cash will be coming my way!!

Sorry some of you are feeling less than good, big hugs xx

For the book, I have done quite a lot of proof reading in my time, if thatā€™s any help?

Also up for a weekend in York, as and when - can get the train direct from here :slight_smile:

Love and hugs to everyone

SJ xx

2729

SJ,

Good luck for tomorrow - No 3 under your belt!

Deb - glad it all went all today. I know what you mean about meeting others in thereā€¦ its a horrible reality, when i had my 2nd tax i spoke to a lady who is 40 and who has secondaries in her liver 5 years on from originally having bc at 35. When she had her 5 year ā€œsign offā€ in Sept when they said her bloods were ok, and was dx in the Oct with secondaries in her liver. It really does make you think, but as Sophie says stories like these must spur us all on to knowing we are all doing the right thing having chemo now to help our chances in the futureā€¦

Hugs to everyone else who are suffering with seā€™sā€¦

Sarah X

2730

Good luck tomorrow girlsā€¦xxx

It is difficult to stare at the raw face of bc, its a horrid non discriminating thing. When I look at my wonderful amazing daughter who worked all through 6xFEC as a journalist. is now on herceptin and tamoxifen and not sure if she will ever have kids but is so up and at em!..and who is getting married in May and wonder if she will get to even my age without recurrance or secondariesā€¦let alone wondering if I will keep going for another 20 or 30 years!

However its just the fact that we have to face our mortality rather than not think about it that is scaryā€¦and I think it makes us live a bit more in the here and now rather than saying one day I willā€¦

2731

I agree. Being in hospital on an oncology ward for 11 days and seeing some quite poorly people of various ages was quite salutary.

I have large boulders blocking my pink road at the moment and I can see everyone else travelling along the road, while Iā€™m stuck at the red lights. At least I feel well as itā€™s now 5 weeks since my last chemo - just hope the cancer cells arenā€™t feeling too well too!
Have my scan tomorrow, but not expecting to find out when they are likely to operate and of course surgeon involved is not an oncologist. I have an appointment with my oncologist on Tuesday, so hopefully will find out if/when chemo will continue etc.
So Iā€™ll wave you all off and wish you good luck as you head for next chemos.

Stella

2732

Agree Lif - after all, we all feel and want to remain ā€˜invincibleā€™ in life but the stark reality of BC can mighty sting at times. But enough of thatā€¦we ARE the Invincibles!

Excited about this book Reeb - can offer help alongside SJ for proof-reading and Iā€™ll be praticing my doodling at 4 am when Iā€™m wide awake tonight! Will email you results (might have to explain them though)!

Went to see breast surgeon today about frozen shoulder and start of lymphodema. Did ultra-scan as had breast red and swollen and thought there might be thrombosis but thank God there wasnā€™t. Heā€™s in a dilemma as says I should really have breast reduction because of the effects itā€™s having on my shoulders (which Iā€™ve wanted for years but my GP just said in the past ā€œloose weightā€) but says that they wonā€™t do i following radiotherapy. So heā€™s meeting with my ONC Monday to see if it can be done after my chemo and before rads and what the risks are re. any delay with rads. etc. Also need to see about having cortisone injcs in shoulder but heā€™s not sure if good to do during chemo. Decisions decisions.

Hope any SEā€™s are mild ones for all Big hugs to you as well Millykins - hope it soon passes.

xxx

2733

Ohhh BPā€¦a boob reduction is amazing! Mine were not big to start with but I had a theraputic mammoplastyā€¦boob jobā€¦to remove my lump as a WLE would have made a right mess due to locationā€¦
Resultā€¦perfect boob!!!..looked horrid to start with but now its really goodā€¦even the woman doing the echocardiogram commented on how good it was! Am having saggy ther one matched in a years time!!!

Go for it and insistā€¦you will not regret it!

2734

hi
sophie - thatā€™s great about crufts - & I agree about having something ā€œnormalā€ to look forward to so I am sure I wonā€™thave a prob with that either (despite my motherā€™s oohing & aaahing when I mentioned it!)- like you Iā€™ve slept really badly this week in anticipation of tomorrow - & have been bad temperedwith OH too even though he has done nothing really wrong

reeb - will def contribute something on PP - looking good
bacca - sorry you have all sorts of horrid things going on with various bits & pieces- horrid
Polly - sorry for your delay - what a pain. I would def stay away from work esp if your counts are low so you would be vulnerable
Julie - you do make me laugh & soon you will have run out of excuses for lack of brain - though I am sure this state will continue for ever - bit like when I had sophie - total inability to concentrate.
hugs all who feel rough & hurrah to all who feel well
am dreading tomorrow in one way but almost want it too so it will be another out of the way - am sure thatā€™s normal feeling
XXXXXXXXXXX jo XXXXXXXXXXXX

2735

Is it Millikins,SJ and Trip tomorrow? Good luck. Wish i was with you.
Polly x

2736

I WILL insist on it LiF - pity GP didnā€™t listen to my requests years ago and itā€™s taken bloody BC before someone said ā€˜youā€™ve knackered your back and shoulders now as well carrying those heffalumps round for so longā€™! Could have told them that years ago!

2737

Polly - sorry about your delay. Donā€™t rush back to work and donā€™t feel guilty about it.

Reeb - great idea about the book, will email you anything relevant.

Sophie - iā€™ve been thinking about asking for my path report as well but a little part of me doesnā€™t want to know everything - silly I know! What does the vascular involvement bit mean? You mentioned about clear margins - is after a lumpectomy or is that referred to with a MX as well? With regard to rads I would say to have everything you can that is offered, youā€™ll have got the worst bit out of the way by then anyway.

It is so sad to hear about others suffering with secondaries and some days I find it really hard to be positive. At the moment it seems that when Iā€™m awake at night my mind is on overdrive, I wake up in the morning and the first thought is BC, canā€™t escape thinking about it. Seems hard to think weā€™ll ever be able to just get on with normal life again. Sorry, feeling bit sorry for myself, just feels a bit all-encompassing.

Thinking of everyone having next one tomorrow - yeah, tick another one off the list! X

2738

Hi Lou - vascular involvement is used two different ways, it is the way in which cancer cells can spread - one is lymph nodes (of which I had one positive, knew that anyhow), and the other is through veins - if the tumour has a blood supply, then obviously cancer cells can leak into the blood stream. Thatā€™s what my sweet lumpy went and didā€¦ grrr. Still, onc. knew that all along, so makes no difference to my prognosis/treatment - so not like it was a major kick in the teeth. Also found out that the one affected lymph node was rated 1+ - which Iā€™ve not heard before - apparently each node is in a little capsule, and the cells had leaked out of the node and into the capsule too, so although only one affected, it was leaking. POO!!

I had mx - so yes, margins apply equally to mx as well as wle. I think the ā€˜deepā€™ margin must refer to how close the cancer cells had spread towards chest muscle/wall - as the rest of the breast has obviously gone into the incinerator by now! (Much though I still think of it living its own life, without me).

If you already know your prognosis, then getting your path. report is not really adding ā€˜bad newsā€™, well, thatā€™s how I felt about it. I also think Iā€™m very lucky to have an onc. who will take as much time as I need at my appointment - I know that Iā€™m def one of the lucky ones.

Sophie xx

2739

Thanks for that Sophie. I was similar to you in that I had a MX with one positive lymph node. Think i will ask for more details next time about margins, etc. X

2740

Just saying night sophie & hope you manage to sleep OK tonight before no 2 tomorrow - mine is at 10.30 & am popping to shops quickly afterwards to take something back before SEs kick in - trying to stay as normal as poss for as long as poss. hair shedding big time so will prob do the full no1 sat or sun as am fed up with it now & am ā€œat oneā€ with my wigs so not too worried. Def helped having a week with 1 inch to get used to it before it goes completely & Sophie doesnā€™t bat an eyelid at me now so think sheā€™ll cope OK though she did say to my friend today - ā€œSheā€™s still my mummyā€ in reference to the short hair which brought a lump to my throat. she was very clingy going to nursery but I think she would have been anyway having had 3 weeks at home doing what she wanted when she wanted!!! - sheā€™s very excited about her sleepover at my sisterā€™s so hope that goes well as sheā€™s now offered to do it for all of my sessions to help out.
night all - & to all the dexed out insomniacs -I may be joining you soon!!!