starting e-cmf on 17th oct

Hi
I going to see onc on friday before chemo as i have now a very tender rib just under my scar not sure ifs of that or not but you know what its like mind starts to race.

Was going to do all sorts today but getting up and can be bothed so going wrap up and go for a walk to get some fresh air
I am pleased that you feel your mood has lifted on the steriods. I think some times mine is i have long periods of time on my hands and no energy to do anything so the mind starts to tick and once it starts its difficult to stop.

Hope everything goes well with your surgeon.
Enjoy your good days
Poppet

Hoping that everything is okay for you on Friday Poppet, hopefully its nothing to worry about but I do understand about the mind racing etc.

I admire you for getting out of the house. Its too cold so I am staying in doors and am about to cook sausage sandwiches for lunch. I may wander out later to buy more food - I seem to want to eat lots of different things right now and am spending a fortune buying food.

I find I have too much time on my hands too (OH at work all day and youngest at school) so its just me often. Fortunately I am an Ostrich and tend not to think too much and drift around in a little haze.

Mind you when I do start to think thats when it all goes pants. I had a darker evening last night doing some reading on cancer and thinking about mortality etc. I ended up staying up until 1am (which isn’t like me post chemo) when everyone else had gone to bed and drinking wine and thinking. I think that last round of chemo it would have been equivalent to the hole I fell down on the Sunday evening and ended up a snotty mess but due to the extended steriods and gradual reduction in dose it wasn’t too bad - no tears!

Enjoy your walk, am here if you need to talk, xxx

Hello
Thankyou for you kind thoughts i show the rib thing is muscle as it hurts only when i touch it and when i stretch.
i just been web cam with my son and it cheer me up know end. OH making a cuppa getting as many in as i can before Friday as it taste horrible for about 4 days after kimo.

The reading up is what i did the other night on this site now i have booked marked i couple of threads and only read on a need to know bases.
I love reading i have so many books i could start a libary thinking about sorting them out and giving them to charity i love crafts as well but usual start them and never get them finished although before bc i used to knit little hats for the babys now i can hardly move my arm so my daughter knits them and i stitch them and ship them.

Thank you xx

Hi,

How are you today Poppet? Is your arm that bad since your surgery? When did you have surgery? Did you have a mx? I had mx and LD recon on 22 Sept and my arm movement is about 75% of what it was but thats mainly because I have been reluctant to do too many exercises because I don’t want to upset my back healing, silly I know but I am trying to do some exercises every day as I really want it back where it was and need it back in order to return to work comfortably.

I went to see the surgeon today who is very pleased with my back wound. He reckons it will take another 2 months ish to heal and says it will leave a big scar but that if necessary we can look at some further surgery for cosmetic reasons down the line. He also reckons I have lymphodema in my breast but thats due to the fact that it no longer drains fluid how it used too (ie its a back muscle not a boob) but that it will sort itself out over time and that my implant has capsulated but again he says not to worry and that can be sorted out in time.

Feeling very achy today. Have you had G-SCF injections at all? I had one last Weds after my 2nd FEC to give my white blood cells a boost to help my wound and was told that it might cause long joint pain but didn’t suffer at all really. Today I started off with low back ache which kept stabbing at me when I sat still and as the day has gone on its worked its way down through my hips and is now in my knees. Not sure why. Dont have a temperature.

Do you know how Trojan is? She hasn’t posted in a while.

x

Hi
i have had quarter of my breast removed a node clearence but i got a infection in my under arm so the scare is really thick and painful had two lots of surgery on the 28th sept never had G-SCF injections but have heared that they give you bone pain.
I went to doc today for my bloods done my arm has gone so black blue it never seems to go away from one to the next.
Hoping they can give me diffrent sickness tablets on Friday i find it hard to talk to my onc how do you find yours?
Went out to day and swept the paths and yard sat on my seat in the garden with hat gloves and scarve OH thinks i gone mad but i know its going be a week on the couch next week.
I have not heard how Trojan is i have not seen her post for a while
xx

Do you get your bloods pre-chemo done at your GP practice then? Blimey, I have to go to my hospital and sit in a clinic line with lots of people waiting for bloods for chemo, transfusions, warfarin etc and then go and sit in clinic to get weighted and then wait to see the Onc the day before each kimo. The Onc is ALWAYS running late (usually an hour) and overbooked so I take a book cos I’m usually there 2 plus hours every 3 weeks then back the next day for the kimo!

My Onc always answers my questions but he always seems in a hurry and doesn’t make eye contact. I don’t feel he knows me and that I am just another patient to check re side effects, change or tweak the dose and then off he rushes to someone else. He’s not someone I feel I could talk to about the emotional effects of cancer/chemo and somehow for some reason I expected that an Oncologist would be more caring - ie I care about people with cancer and want to make them better, how awful for them.

Still I suppose thats like hoping for a midwife who has had children and can understand the pain you’re in or a dentist who doesn’t have bloody perfect teeth and can understand that your toothache/hole etc isn’t caused by you being rubbish at oral hygene!

I have to say I’m a little with your OH on that - outside! Sweeping paths and yards! Sitting in gardens with hats and gloves!! Uck! I shudder at the thought! I hate being cold with a vengance and I hate being outside when its cold! Mind you when I do get myself off my fat ar*e and go outside, generally for a walk along the beach with my mum and her Westie, I thoroughly enjoy it, its just making myself go thats the hard bit.

I have had the worst week for a 2nd kimo week in terms of couches. I haven’t been on it once apart from yesterday evening and 2 hours this evening. I had way too much energy on Monday and was out and about, Tuesday OH was home and I just cant sit and slob when he’s racing around like he does and today was 40 mile round trip to see surgeon followed by an afternoon and evening of family crises. I am so tired and fed up now I keep nearly bursting into tears for no reason and find that I am angry at my OH and youngest that I am feeling like this and they haven’t noticed and helped out with dinner/homework/even a cup of tea. Thing is, its not them that have put me in this position, its myself for not resting and my 2 other older non-resident children who are having crises and phoning every 5 minutes (or their college etc are re them) wanting to go boo hoo! Any other time I would find it stressful, tonight I want to scream at the outside world, turn the phone off and tell them all to sod off.

I am spending tomorrow on the couch, I am talking to no-one, I am switching off my brain and my phone!

xx

Hi all
Well i can relate to the switching off the phone i am like you my kids are older and live away just moved out the same week i got dx but i have always been the problem solver of the family and now i not able to handle the solving and they don’t know what to do

I think i over done it yesterday my ribs are hurting, and i don’t know how i am going be at the hospital 2mrw for 9 just stuck to the bed OH goes to work at 5.30 so i just turned over and bed down he put the travel kettle next to the bed so i could make a cuppa with my bag of goodies to eat i put the telly on shut the outside world out for a bit.

Feeling a bit weep as well today i am in one those moods pre chemo when you know whats coming and you just want to be back to your old self and get out of this nightmare…

OH just been on the phone hes heading home early from work so at least someone to talk to instead of shouting at the telly he trys bless him keeping every thing going and he finds out on Friday if he has a job one blow after the other.

Sorry not very cheery not sure when i be next on it depends how the kimo wants to play.
Moan over and i will be more cheery when i come back i hope
Hugs Poppet x

Hope you have a nice day
Poppetxx

Hi Poppet,

Just wanted to let you know I will be thinking of you tomorrow and hoping it is nothing to worry about. Also fingers crossed for your OH that he still has his job, its definately not what you need right now so sending hugs to you. ((((((((())))))))))))))

I hope you are feeling a bit better this evening and and able to face tomorrow. Is it just seeing your Onc about your rib tomorrow or are you having your kimo too?

xx

hi ostrich
well onc thought i had just pulled something in rib but we are going keep a eye on it she give me some more tablets to stop sickeness they are aanti anxiey tablet that makes you sleep and fingers cross just feel muddled and no sickness as yet.

Hubbys firm has delayed tell them untill the 19th dec as they did not get the 30 days notice out on time heyho
How are you feeling are you still smiling?Is your back healing any better?

Iam a bit concerned over Trojan never seen her on any threads if you read this let us know you are ok xxx
Poppt

ps had my 3rd epi 1 more of this 1 yippie and then 4 CMF xxxx

Hi Poppet,

Glad to hear they don’t think its anything serious with your rib but are keeping an eye on it for you.

Hope you re doing okay after your kimo and manged to sleep on your tablets - do you normally have trouble sleeping after chemo? The steroids dont affect me in the sense that I am not up until 3am cleaning thankfully (I couldn’t stand it if I was cleaning at 3am LOL!)

I truly hope your OH’s job is okay, the 19th December is way too close to xmas to be getting bad news, I’ll be keeping my fingers well and truly crossed for you both.xx

Hi i have the tablets for the vomiting but they just happen to make you sleep, i don’t have trouble with the steriods other than i some times have nightmares.
Have applied today to see if i can get help with prescriptions its cost me since i started kimo £64 as ever new one they give me the prescibe to pick up.

But the tablets have worked up till now no sickness and just the tired and general aches and pains.
Even managed fish and chips supper which normal on my second night i would be stillo having crumpets or toast.

I also have to say my hair has started grown i was complete shiney head but now have about 2ins growth except on the side i sleep that side looks like a babys fluff.

How are you feeling is your back any better have you been out and about any where?

Have had my daughter here for weekend been up in loft with her dad getting xmas tree out as i said before kimo on 19th or 24 if bloods play up.

well hope all is well with everyone xx

Hi Poppet,

My kimo unit give me all the drugs I need for that course of kimo to take home with me and don’t charge. The only thing I have had to pay for is the Nystatin and Diffclam that my GP prescribed because I went to him on Monday about my mouth. When I mention it to my Onc on the 8th he’ll add them to my prescription to take home on the 9th after FEC 3. I end up leaving with a massive bag and last time had my G-CSF injection and a sharps bin too!! I would be really pi**ed off I had to pay for them all!

Thats good about your hair and you haven’t even finished yet! The hair that hadn’t fallen out after my first FEC (basically the top of my head still has hairs although sparse) has continued to grow as normal and has gone from a grade 1 to about a grade 2 so I look odd. I am almost hoping it falls out soon (thinking 14 days post 2nd FEC maybe the rest of head hair, eyelashes etc might go) otherwise I’m going to look very strange by the end of Feb when I finish kimo!

I have had a fantastic girlie weekend. All my 3 kids have been away so the 1 at home wasn’t here and the other 2 have been away so no calls/texts etc. My best friend (who’s also had BC) came over on Friday night and we ate chocolate and drunk lots and talked. On Saturday my husband went to work so I got up, made a huge cup of tea and got back into bed and watched a Life on Mars DVD. Thats the first time since a couple of days after I came home from surgery (10 weeks ago) that I have gone to bed in the daytime. I didn’t nap as I did last time but just enjoyed being snuggly! Last night two of my friends from Exeter (where I used to live) came up for the evening and we went out for Italian and then talked. I haven’t been to bed before 3am this weekend!!

My OH and I just picked up our youngest and we’re about to go out for a carvery cos I couldn’t be bothered to cook then I’m coming home for a bath and bed!!

My back is the same, improving very very slowly and still being dressed every 2 days. I am seriously considering asking for maggot therapy which a couple of weeks ago I baulked at the very thought of. Maggot therapy would clear the dead tissue out in a couple of days and allow it to begin real healing, the treatment I am currently having (gel) has so far over 5 weeks not got rid of it and will take another month to get rid of it.

Take care, xx

Hi
I am pleased you have had such a good weekend mine has not been to bad considering just had kimo i keep waiting for to hit me but as yet just the normal tiredness.

Having been up to much just watching the world go by and the snow come down the best place to be is in the house.
Take Carex

Hi,

Snow! Wow. We never ever get snow here - too close to the sea. Occasionally the odd flurry that evaporates when it hits the floor but thats it. My little girl would love to see snow. We’d have to travel for that! Has the kimo hit yet? Hopefully not and you are just feeling a bit tired. Is that your third or 4th?

Weekend was great, today has been full of ups and downs and right now I hate BC with a vengance. This morning my BCN invited me to apply for funding through a charity for people under 40 with cancer to take the family on a day trip/weekend away etc. Very nice! She’s going to send me the form cos it would be nice to do something after kimo. After that I looked on here following my surgeon’s comment about me having lymphodema in my breast and that it would go away to find out having read some threads and the BCC leaflet that, it wont, it will be with me forever.

Now I am really fed up, its one thing after another and I so didn’t want lymphoedema cos I don’t know much about it except its permanent and I may have to make adjustments to my lifestyle forever in order to manage it and I don’t know how it will affect me doing my job etc. I am going to measure my arm tomorrow morning and again tomorrow evening to see whether its in my arm, I have some of the arm symptoms but haven’t noticed swelling other than in my new boob (which I now hate too) and am waiting for my BCN to call me back as I have been told I should be referred to a lymphodema nurse/clinic.

On the up a bit after one of the practice nurses I haven’t seen since my back opened up wants to try honey (medical grade) on my wounnd before we consider maggots and is personally going to look after getting my back healed along with my friend.

What a rollercoaster!

Hi
You are going through it bless. I just had my 3rd epi i don’t feel to bad. Managed to finish xmas shopping and now just waiting for the kids to come home hoping i am going be ok as kimo on the 19th but i should be.

Thats good about the holiday we are try to plan some thing for when i am finished i want to go to monkey world we had a cruise booked for hubbys birthday in March but had to cancel.

The honey sounds better than the maggots but i suppose which ever works really we will try anything its strange how much you can take.

Keep smiling upside down rainbowsx

Hi,

I haven’t started my xmas shopping. I keep putting it off but I have to get it done this week as I have my 3rd FEC next Tuesday and don’t want to leave it until the last week.

When do your kids come home? My son comes back next Friday and my eldest daughter lives a couple of miles down the road so won’t be coming home (we are going there for xmas dinner which will be the first time in 20 years I haven’t done xmas dinner, mind you its the first xmas in 20 years where I haven’t had a believer in the family as my youngest daughter has now confessed she knows about Santa and has done for a year or so, I feel really sad about it).

Where’s monkey world? Sounds a huge difference between a cruise and monkey world (unless its in Florida or somewhere else far away)

You said your hair was starting to come back already didn’t you Poppet? Did ALL your hair on your head fall out and eyelashes and eyebrows too? I am 2 weeks past 2nd FEC and still have some stubble on my head (more on top than the sides, can’t see the back but can still feel some) and the hair on top is still growing and doesn’t look like its about to fall out anytime soon. I can see me having to have a haircut!!! My eyelashes are still there although my eyebrows I think may not last much longer as they have thinned and a few dropping out.

Hi
It is sad when they stop believing. My Oh and kids making xmas dinner which is usual. Son comes home next weekend which he is so upbeat it nice to have him around.

All my hair fell out apart from my eyebrows and eyelashes but i am inpressed by how much it has grown i have never had my wig on yet but will do at xmas.

Monkey world is a place in weymouth that has rescue monkeys ask you daughter i am sure she would of heard about it i like things like that a bit of a come down to the cruise we had planned for his 5oth.

At the minute i am desparate to get out the house i am so use to working 4ohr week and been on the go even do the hoovering makes you so tired and when it comes to making the bed i could just crawl in my BCN has said try get fresh air which i do go for short walks but its easy said than done i live on a hill and half way up i am so short of breath.

Well fruit and ice cream just come.

poppet

Hi Poppet,

Just got back from doing my xmas shopping and I think I’ve done about 75% of it with the rest planned for Friday. So pleased but oh so hot! Why don’t they put the air-con on full in shops? I had my indoor clothes on plus tights under my jeans, a scarf, coat and wig and by the time I hit the last couple of shops I was melting and wanted to rip my wig off!!! Even if my fingers could have coped with another bag my body couldn’t have coped with standing in another hot shop whilst I silently melt waiting in the queue!

Did you manage to get out of the house? I know what you mean re being used to being out. I used to work a 50 + hour shift pattern before a 3 or 4 day set of rest days and find myself bored. If I go out I spend money which is NOT a good idea unless I meet up with my Mum and go walking the dog. All my friends work either the shifts I worked or 9-5 M to F so I find myself alone. I have given up daytime TV as that was making me more depressed and seem to spend my life in cyber-space (thankfully I don’t have a lap top and have to go into another room to use the net else I would probably have the TV on too). I thought the Wii would keep me entertained but I can’t even be bothered to go on there - I could be playing golf, tennis, baseball - allsorts.

Is your breathlessness due to your kimo as well as your tiredness?

Hope you are feeling a bit better today and that the icecream helped, xx

Hello
i had a good chuckle at the shopping spree i having been out yet as we still have a lot of snow.
My breathlessness is due to lack of iron due to kimo.

I have a lap top and now i have a fat backside to go with it. Daughter pop in today shes bought herself a wig she liked mine i told that she find it hard to leave on her head. I don’t even like hats i frighten a little boy in the docs when i was there last week like you i was getting hot and thirsty when i took i tantrum and not thinking pulled my hat off this little boy just looked and burst into tears hes poor mam was so embrassed.

OH worse than the kids he shouting for his xmas tree up i might do it at the weekend if i have the energy i just hoping when i start on CMF that it doesn’t make me as drained my onc reckons its gentle but who can tell as i have that on day 1 and then again day8 so at hospital twice for 1 cycle.

I don’t know about you but i am eaten things i never liked in my life and things i used to like i cannot stomach its like been pregnant i have craven for things like ice cream i never ate it before but last night i had to have it OH had to go to the shop.

Do you get your next kimo this week are next? Hows your back healing are you managing to enjoy a bath yet?

Don’t over do it with the shopping make plenty of time to rest.

take care poppet