Was just about to sign off and curl up on the sofa with a DVD.
Good luck with going back to work. Take it easy on yourself and don't expect too much from yourself. I cant face going back to work yet, I don't seem to have the time! I also can't bear the idea of being near some of our "customers" during this or colleagues who might have been in contact with them!
Do you know when your Onc appt will be?
I am using facebook so pm me though you'll probably be surprised, I don't think people ever look as you imagine but at least you can "see" me with hair!!
hi all... Ostrich you are a very brave bird! All credit to you...
Re the shoes issue - i went looking for some the other day - they all have huuuugeee heels and wierd stacked soles. I am already 5'7'' so I dont want these clod-hoppers! ( althought I am a fashion concious girl!) its very annoying that they seem to stock very few normal lower heeled trendy shoes... ( thats ANOTHER thing off my chest!! - ha ha)
I have had an outbreak of spots on my face ( just in time for halloween) I feel very ugly today.
Am still waiting for oncology appointment and then I will face up to the next step... until then Im fogetting about it as much as I can. Getting very aprehensive about going back to work. Im the manager of my office and I feel very vulnerable not knowing what has been going on in my absence and will have 6 weeks of emails to catch up on... am intending on doing short days etc next week and seeing how it goes
any of you girls using facebook? if so, let me know and I'll PM you my link - be great to see what we all look like etc etc...
Wasn't feeling too good yesterday so didn't come on. Feeling a bit better today, almost normal. Its weird and I can't describe how I've been feeling. I've felt sick even with the anti sickness tablets but ginger beer has kept the icky feeling at bay and no actual sickness - hooray! Haven't felt wired by the steriods, tired but unable to sleep and face flushed. Just feel odd. My whole body feels like its unwell but not in a fluy way - a poisoned way I suppose so if I ever get poisoned I'll know! As I feel quite a bit better today than yesterday am hoping tomorrow I will feel normal and have only 2 days of uck post kimo! No othe side effects yet except losing a bit more hair than normal but then I've always been a shedder!
Only bad thing is my back wound has opened up! It bled a little bit last friday and I put a dressing over it so that I could wear my post mx bra for a bit of support last saturday night. I decided to leave the dressing on so I could keep wearing the bra as it was kinda nice having 2 boobs looking the same without having to construct a tape bra for my "good" boob. Last night on getting into bed I noticed things were not looking good and a whole load of fluid had appeared on the dressing. Took it off and uck! Appears my scab in the centre part of my scar, the part that hasn't healed, has gone white and come off and a load of brown fluid has come out. Couldn't see very well with all the uck but it looks like a hole in the top layer of my skin. Panicked at about 11pm stuck another dressing on and went to bed. Surgeon is on AL this week, can't fit me in next week (and as my immunity will be low I do NOT want to go to a hospital full of germs) but maybe the week after!!! Rung the BC nurse who said as I am 2 days post kimo trekking 20 miles to see them in Bristol not adviseable so to go and see my GP and practice nurse who can advise if the wound is okay and dress it if necessary. The BC nurses will see me next week if the GP not happy too. Spoke to my friend who is a district nurse who said not to worry so am taking deep breaths and thinking that as no more blood or fluid over night it might be okay. Scared though in case I get an infection in it whilst my immununity is low!
Have an appointment to see the wig lady on Saturday so will be hopefully getting a lovely wiggy to wear in time for hair loss, probably end of next week!
Dot, thats great news re your critical illness payout! Like you say we'd rather not be going through this but having some financial pressure removed is kinda nice. I had my payout a week or two ago, it was only (only!) Â£20,000 but has taken 2/3 of our personal debts away and what with my OH's xmas bonus we may well be debt free in 6 months (aside from the mortgage!)
Hope the rest of you are okay.
Lainey I have told Abbie about emailing Amiee so I'll leave it with her. How are you feeling now about things? Its the 4th isn't it?
Jenny, how are you honey? Are you happy with your treatment plan?
Speak to you all later, much love, xxxx O
hi dot thats fantastic people normally have a fight with these sorts of things. i know u would rather not have cancer but some people have cancer and no finances either and struggle. how bad must that be. but thats fantastic it will make things a little easier for u love lainey xx
ostrich- i also hope you are okay and am thinking about you look forward to knowing your okay love lainey xx
(((((((((((((((((((((((((((((((((((((((((((((((hugs)))))))))))))))))))))))))))))))))))))))))))))))))) to you's both xx
Just got some great news! My Critical Illness policy has paid out! It doesn't cover the whole mortgage but its more than half. I am so chuffed,I was sure there would have to be a fight to get it.
Might treat OH to a take-away to celebrate.
(I would still much rather not have BC but you have to take the good side effects with bad eh?)
Got my new shoes in M&S ! Had real trouble finding smart shoes without 6 inch heels! After 2 operations on a broken foot in the last 2 years ,I need "sensible" shoes.
Ostrich,hope you are OK,thinking about you xxxx
Ostrich,hope you are Ok today,it must be awful just waiting to see what effects Kimo will have (or not hopefully!) At least after the first you should have a better idea what to expect.
I am going to get crafty this morning and make some cards ,then might pop out shopping later,I fancy new shoes for the weekend!
hi ostrich i didnt expect to hear from you so soon im so glad all went okay for you. what a thought going back to condoms though eh? im so happy your doing well i was thinking about you all day .. abbie can e-mail aimee at anytime as i wasnt sure when would be best. take care love lainey xx
Ostrich,glad to hear you are OK ,hope you stay that way!
Just think of all those nasty cells being gobbled up by the Kimo!
Just got back from my first kimo. It went well, the nurse was lovely and took loads of time explaining everything and sat with me whilst she administered all the syringes. Have taken my steriods and anti sickness so expect to be "buzzing" for the evening. One of the kimo drugs is pinky red and she did warn me that my pee would turn pink quite quickly - I'd say!
Jenny, its good to hear from you. I totally understand wanting to forget the whole BC thing and stay away. I am not spending as much time as I was though I do pop in twice a day for a chat. I hope it goes well for you when you go back to work, take it easy though.
Not sure what'll happen re sheets action cos one thing the kimo nurse said that I hadn't read before was that we should use condoms because the kimo drugs will be in all my bodily fluids and condoms would protect my OH from the drugs getting into his system!!
Dot, it sounds like you are making good progress with heading back to your previous life and working out what your life is now. Take everything you can and try all thats on offer and hopefully some will work for you. I suppose as I am still in "active" treatment I am coping okay but I do feel that I will start to struggle when come Feb/March they give me my tamoxifen script and say "ta ra" and I have to face going back to "normal" or whatever that will be from here on in.
Thanks for your well wishes Lainey, hope you are well. My youngest is at home with me this week (poor her as its just me and her) and we are planning a DVD fest so I might suggest she emails your youngest if she starts to get a bit fed up with her kimo mum.
Not sure how I will feel tomorrow but will pop on if I get chance.
Love to you all, xxxx
I know what you mean about trying to forget BC for while.You are doing very well going back to work next week.I am aiming for mid November but that is mainly down to my emotions/depression.Although my job is physical so that is a consideration too! I am still stiff down the one side and my arm is weak although my range of movement is good.
I had a busy weekend and managed to forget BC but then ended up crying myself to sleep on Sunday night.So its seems distraction is OK but eventually my emotions have to come out!
I have been going to a relaxation class at the local Maggies centre and its very good ,the only complaint is that the people mainly have been going for years and as a newbie its hard to feel part of it.I am quite shy so end up sitting alone while we wait on the class to open.
I start a "Live with less stress" 6 week course on Thursday so hope as we will all be starting together that it will be easier to "join in".
There is a group of girls on here who meet local to me and I would like to go but my shyness is a stumbling block and I will always find an excuse!
Take care Jenny and pop in now and again to check up on us!
Hi everyone - sorry i havent been on here for a few days - am trying to put my situ on hold for a few weeks while I gear myself up to return to work next week - just going to take it easy and slide myself in gently - probably doing 3 days next week.
I know it might seem selfish to stop coming on the thread - but just for a few days I want to try and just FORGET everything to do with breast cancer ( which is not easy during the awareness month!!)
am very jealous of ostrich getting some action between the sheets.... GO GIRL!!
Ostrich,i hope you had a nice day shopping yesterday,shame about the dentist though! Hope the dentist was gentle and doesn't plan too much work!
I have my fingers crossed that everything goes well today for you.
I had a busy weekend,I had lunch in town on Saturday with 3 colleagues,it was lovely apart from the weather which was foul! We were nearly blown over and arrived at the restaurant looking like drowned rats! We did a bit shopping after lunch and I got another pair of trousers ,though I cheated and bought the same ones I got on Friday but in a different colour! saves all those trips to the changing rooms! Also got a lovely grey cardigan.The new clothes are for the conference my work are holding this weekend,my confidence is rock bottom so I thought new outfits would help! Well thats my excuse!
At one point ,a colleague said about my BC "well its not as bad as my husband leaving" Hers left 30 odd years ago and boy, she must be really bitter!
Then on Sunday we spent the day with friends at a friends house and one said "I have had such an awful year" and kept moaning about it! I was tempted to say "I think mine was worse than yours!" She was threatened with redundancy in May but in the end kept her job! Not quite comparable to BC!
I suppose people are just being normal around me and at least they are not pussyfooting around and not saying anything!
Hope to hear how the Kimo went,
Hugs to all
morning ostrich just to let u know ur in my thoughts today and hope ur okay love lainey xx
Hope you are all well. I am off to the new shopping centre in Bristol (Cabot Circus) today to do a bit of girlie shopping with my friend and my daughter. I have an appt with the dental hospital too as my dentist referred me there about 7 months ago to help with my gums. I have had to keep putting the appt off due to cancer related stuff and don't really know why I am bothering today (perhaps I am developing some kind of love of hospitals!) cos I am sure they will refuse to do anything as I am about to start kimo but I am hoping that I can at least get the initial appt done and find out what they can do for me, even if that be after kimo, or if there is anything they can do or recommend to keep my gums in good health through kimo so that my teeth dont fall out.
Hoping you all had a good weekend, love to you all, O
hi meggiemay, welcome to the thread im sorry i read your post last nihjt but forgot to reply thats the result of a vodka or two. anyway i will help and support you in any way i can let me know if u need any advice. for me i have opted for double mastectomy with immediate recon using my stomach. i had had ovaries removed and i am getting better day by day although as u will get to see i also have hard days too but hey doesnt anyone. it is sooooooooooo scary but we are all here for u. i have learnt its ok to be scared but as i say let me know if i can answer anything for u. can i ask what ur situation is? love lainey x
hi ostrich thats fantastic we struggled after my op and have managed now. we really need that closeness.hope u had a lovely night it sounds like u did though love laineyxx
Well ........... we finally did it! 6 weeks of me being scared of being emotionally unable to cope, 6 weeks of me being scared of how on earth we would physically manage it without me being hurt/uncomfortable etc and it becoming this bigger and bigger monster in my mind and it was fantastic, no pain and just a few tears of relief. I know its a bit private but the effect on the physical closeness of me and my OH has been one thing this BC has taken from me that was really upsetting me and I am really pleased to have reclaimed my sex life and intimacy with my OH. (Oh and it helped that we were in the same bed and had had several drinks down the pub!)
Hope you are all okay, off to church now, xx
Welcome to our little thread. Its not clear what you have opted for but I am guessing you are in the same position as Lainey, if so I am sure she will be able to give you lots of support.
Hi just wondering how it all went for u... I have now opted for the same and absolutely terrfied! Havent yet spoken to anyone thats had it done
all the best
Hi Lainey, that's brilliant news, only 2 weeks to wait and then hopefully you will have a date for surgery and can start focusing. Its so hard when you don't know when something will happen and is much easier to deal with when you have something to work towards. Well done you! Enjoy your lovely weekend! You deserve it for everything you have faced and have yet to face and for losing so much weight!!
hi ostrich i am still here i was at work yesterday and although only part-time i get really tired and was asleep by 8pm. anyway u have a ball this evening u totally deserve it. ostrich i really appreciate your words of support a few days ago regarding hospital cancelling my appts and i took that day to settle down and gather my thoughts. the next day i called and spoke to receptionist who pointed out that although 04/12 was mentioned it shouldnt have been as surgeon was out of clinic and it was now 19/12. i asked to speak to surgeons secretary rather than accept info from switchboard staff. i was given the number and she was so lovely. i explained my concerns and how to date 4 appts have been changed in 6 months which was difficult as this thing is hanging over me . anyway she was unaware of problems i was having, apologised and booked me in for 07/11 so i am so happy. my OH is taking me to a castle for the weekend this weekend and hosp next week cant wait. you remember and take it easy, u are doing fantastic and remember we are hear if you want to rant, cry or laugh lots of love lainey xxx
jenny, i dont know a lot about radiotherapy either but i hope it isnt too bad for you. i think you also have done great although i accept it must be so hard. its easier for me as i am not in your position but again will be here to speak to. mind keep posting jenny we have a really nice thread here where we know we are all concerned for each other.xxx
dot, im glad you managed to get some trousers i am as bad as u trying clothes on. but im doing that today too as i have lost over 5stone in 18 months and slowly building up my wardrobe as i want to lose more and dont see the point buying things that will be too big soon. but im fed up living in tracksuit bottoms. have a lovely day dot today, you sound a lot better these days but as i always say one day at a time or half a day at a time in my case xxx
Hope you are all well today! Are you still out there Lainey and Angela?
How are you feeling today Jenny?
Do you know I've just realised I am likely to be the only one on here having kimo! You'll all be able to sit around the table with your lucious locks swinging whilst I have a shiny head! Promise not to take the pi**? 🙂
Glad you found some trousers Dot! Hope you have a good lunch with your friends!
I am off out with my OH tonight to get him drunk. He doesn't drink at home (not like me) and has been sooo tired with work and worry recently he needs to let his hair down. All our friends are busy this weekend so my idea for a right royal rave up before Tuesday has fallen through but I am still going to take him to the pub tonight and plie him with drink. You never know, we might manage to do more than kiss goodnight on the sofa for the first time in 6 weeks (thats if my nerve holds out!). I have been sleeping in the spare room for so long now for the sake of getting comfortable and not disturbing each other we have decided that we need to bite the bullet and get back in bed together if we are ever to have a chance of anything more. If all we manage is a cuddle that'll be good. If more, then even better! Wish me luck!!
Am planning to go to church tomorrow and had tried to persuade OH to come (we are having a biker's service tomorrow with motorbikes in the church and all!) but he has turned me down in favour of going out riding on his motorbike!
Hope to get on here tomorrow if I don't have chance later (mind you have only managed to ween myself to twice a day so far and don't think I can manage only once).
Love to you all, x
Jenny,good new that you don't need Kimo.I am sure most people on here would say that radiotherapy is the easier of the two.I have had neither ,but I think generally you feel more "well" during rads than chemo.Rads is more of a bind as you have to visit the dept everyday for a week or so each time and the actual treatment only lasts a few minutes.
I hope you are more settled now after your "google scare"
Ostrich,you are right about it being scarey when they say"OK the cancer has been taken away ,take these tabs for 5 years ,off you go!" I felt like I had fallen off a rollercoaster! I AM glad I don't need "Kimo" or rads but its still scarey and its all been so quick!
I had a lovely lunch yesterday and finally got some new trousers ,after trying on 12 pairs! So quite chuffed with that! I was fed up taking my jeans on and off!
I am meeting some colleagues in town today for lunch so looking forward to that.
Hope you all have a lovely weekend and don't spend too much time thinking BC or Kimo or rads!
Love to all
Hi again Jenny, sorry it was such a short post earlier!
Have you had chance to look into the differences between kimo and radiotherapy yet?
Did the hopsital reassure you enough about your tumour and your prognosis? Do you need any additional therapies such as tamoxifen - I am not sure whether a phyllodes tumour is responsive to things like hormones etc.
Do you feel more confident given what you were feeling like after your googling in your future?
8 weeks is a long time to wait, I suppose because its a daily treatment for usually 3 weeks and they have to very carefully mark you up etc so that they can zap the right spot. Didn't you have a mx though? Which bit of you are they zapping?
Its good that they are doing futher treatment I think. I think I would have found it harder to just be operated on and then cast out into the big wide world with just a "your cancer is gone" and nothing to prevent it coming back.
I hope you are taking it easy with a glass of plonk this evening!
Much love and again sorry I wasn't able to get on earlier after hassling you for days asking how you are, I was still thinking of you, particularly at about 10.30 this morning, xxxx
Hi Jenny, in the middle of something but just quickly logged on to see if you'd posted.
Glad you don't need kimo and just radiotherapy and are able to find out some info (I don't need it so haven't looked into it)
Will check in again later, lots of love, x
I have just got back from hospital.... I DONT NEED KIMO..... !!!!!!!!!!!!!!!
however... they think I need Radiotherapy... I know NOTHING about this - but they seemed suprised I was upset - they thought I would be happy that I dont need the chemo/kimo ... but because I did an ostrich and stuck my head in the sand about the whole thing i dont really know what the difference is... so now am going to look into the radiotherapy, which they assured me is painless but would involve a dose of it everyday for at least 3 weeks. Typically though there is a waiting list so it DRAGS on ... they think I would have to wait about 8 weeks before it all starts - so I cant even relax and enjoy Christmas because this nightmare still hangs over me. ( am I being over dramatic? - is it a pinch of salt this radio thing??)
I am SO tried and worn out emotionally about all this. I really did think that once the mast & recon was done that would be the end of it. No one warned me about further treatment so im REALLY FED UP !Â£"^$Â£%&$*^%&*^*&()&*(_*_)(*_(*&^)*&%(&*%^%$&%Â£^%$Â£%^$*^%(&d;ghn;aosihgb;oaigj !!!
I know what you mean re peace and quiet. My son has been home from college all week and slobbing about in his room. Even though I can't see him it irritates me when he just vegges around the house and I have to kick him to get him to do ANYTHING. He goes back on Tuesday but the schools break up today for half term so I will have my youngest at home for the next 10 days. At least with my son around I can still do my stuff as he doesn't really want to hang with his mummy but next week is going to be a whole different story! Kimo on Tuesday so think I will have to get lots of DVDs in this weekend and chocolate - not for me but for my daughter who will be bored to bits with an ill mummy. I am already looking forward to the week after when she is back at school, I will be feeling better and back to my normal daily pottering routine! Goodness knows how I'll cope when I go back to work!
Enjoy your lunches Dot. I keep half turning things down and I'm not sure if I am just making excuses. Not going to a party tomorrow night as still too nervous around crowds incase someone bumps my boob or back. Anything after Tuesday is a maybe in case I am ill, bald and afraid to go out etc. I MUST get on with life otherwise I'll end up waiting to the end of kimo and then until I have hair and 6 months of my life will have passed!
Hope you find something to wear. Splash out! You deserve it!
Love O, x
Peace at last! My OH has had a few days off and just moped about looking miserable watching his DVDs and his TV programmes! To be honest I think he is a bit stressed out with my BC and his work,but I am glad he has gone back to work! I am much happier pottering around on my own at home.
Now I have my remotes back!
I am going to Lunch with a friend today and again with another bunch of colleagues tomorrow.
My work are hosting a conference next weekend so I have said I will go along.But as well as worrying about seeing everyone and worrying about having someone to tag along with I am worrying about what to wear!!! I guess my confidence is rock bottom and just want to feel good in what I am wearing.
Might have to go shopping but its smart trousers I really need and find it a nightmare getting them to fit.Also don't have much money..........but what the heck!
Good luck Jenny,
LOL at the "kimo" ostrich,my friends son always called toast "toe" so we still say that sometimes!
Love to all
Just popped in to read through a few threads before I go to bed. Thought I would share this - my 10 year old daughter made me a card to wish me luck with chemo tonight and spelt it "kimo" - henceforth to me chemo shall be kimo. 🙂
Goodnight all, x
Good luck tomorrow Jenny, x
hi dot i want pj's like that my newer ones have a dog on them so not sure what to take from that. im glad u are feeling better it helps us all stay positive and i know exactly what u mean about the dark hole. take care love lainey x
Just to give you a wee laugh girls.
At the weekend I had a clear out of old clothes and found some new PJs in the wardrobe (bought in Next sales and stored away) so put out a pair to wear.
After my bath I put them on and saw that they have "Practically Perfect in every way!"emblazoned right across my chest.I had to laugh!!!!
I am feeling better in myself ,stronger emotionally at last! I no longer cry for no reason at all,just when something upsets me so thats a start.I think I had to fall down the dark hole so I could climb out ,if you see what I mean.
Jenny,don't take too long to let us know how you got on as we will all be finding it difficult to type with our fingers crossed.
hi jenny im so glad you let us know your ok we have been worried about you. i too will be thinking of you tomorrow. but yes please take those questions and we are all hear for you if and when you want to speak ((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((hug)))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))
this is such a lovely thread love lainey xx
Darn it, I was typing a message to you Lainey and lost it and now can't be bothered to write so much.
In summary, glad you have a great OH and in laws, we all need family, sorry your mum is being an ostrich (mine is completely looking after me having lived her own life for 20 years with her partner and then losing him 3 years ago she now has something to focus on - me and her puppy. She is knitting me a variety of chemo caps from the cute to the wacky (which I have yet to see). I don't think she has knitted the dog anything (yet!).
Sorry you have the whole menopausal thing going on with the additional stress of facing a bi-lat mx feeling like that - at least I get the menopausal stuff AFTER the mx.
Jenny, really to hear from you. Echoing what Dot said and enormous cyber hugs! Been really worried about you but guessing you needed some space.
As Dot says, write down your questions now before tomorrow so you at least know what you are fighting when you leave. Do you have someone to go with you?
We will all be thinking of you tomorrow and will be waiting to hear from you but I promise not to tear my hair out if you don't feel you can talk tomorrow!
All the best honey,
Jenny,so glad to hear from you.We were all worried about you.(((((((((((((((((((hugs)))))))))))))))))))))))
I hope you have written a list of questions to ask tomorrow as your brain will turn to mush if its anything like mine.LOL!
Being scared is OK ,its natural as you are worried about what they will tell you.But whatever they tell you,you will be able to deal with it and we are all here for you.
I too had a scare reading stuff on here a couple of weeks ago but for me that was the rock bottom that had to come before I could get better,if you see what I mean.
I do hope they can put your mind at rest tomorrow and I will have my fingers crossed for you.
Remember to come on and let us know how it goes,
Hugs and best wishes
just a quick note - popped in just to let you know Im still here!! just very teary and petrified about my consoltation tomorrow morning... fought tears all day... til now!
hi ostrich yes i am 32yrs old. im a nightmare for abbreviating everything i think as i work with computers i cut words down as we have limited space to give details to engineers. i am menopausal at the moment as my faulty gene gave me upto 35% risk of ovarian cancer too so i have my ovaries removed in august which brought on the menopause big time. i will have hrt after breasts are off thats why im so keen to have operation also. as i find the menopause difficult.
as for my OH he is amazing, we have been together 15years( love at 1st sight) and i wouldnt get through this without him he is a fantastic partner and great dad and im so lucky to have him. his family are the same i love my in laws more than anything which is a good job really as no support at all from my family. parents split up when i was a baby and dad moved hundreds of miles away. mum well she would rather not know. she played bingo when i was in for operation and advised she wont visit this time either as hospital is too far away (20 mins). but i know i have my OH family which brings lots of brother and sisters in laws mostly around my age and lots of friends so i am well looked after.. love lainey xx
You're only 32 did you say? I am only 39 and must be substantially older than you as I do struggle with your text speak LOL! My 20 year old daughter, and even worse, my 16 year old son, txt speak me sometimes in such a way that I have NO idea what they are saying! For years I thought LOL meant Love You Lots - duh!!!! In fact its a "secret" code between me and my 20 year old cos I was so slow on the uptake as to what it actually meant so between us it means Love You Lots.
If you don't mind me asking, y (see I am doing it!) are you menopausal (meno?) - is that something related to your BC family history or other medical thing or are you just very unlucky?
Also, again, personal question, but you don't mention an OH? Do you have other people to support you?
hi ostrich u have certainly not upset or wound me up you are actually very reassuring helping me to try and think straight while helping me look after myself. thats exactly what i need as these people whose hands we put our lives at times in do annoy me. prev i have had to make complaints regarding level of service etc. i clearly see my life different from them i see myself as a young mum trying to look after herself while having such a huge risk and really want that risk lifted. its strange as although im menopausal and sometimes struggle symptome of meno ( well most times) i feel so elated that i took the step to protect myself. i am also very aware i have prob reduced my risk of BC by doing this, but i dont take comfort from mammograms and at times dont take comfort from SOME doctors etc looking after me.the service here at times is awful not so long ago i woke up on a wed morning and my bra was covered in blood at the right hand side so i paced the floor until 9am and called the hospital assuming as i attend family history clinic they would tell me to pop down to see my consultant how wrong was i as i was told just now i am seen at f/history w/out symptoms and need to go to f/history with symptoms and that clinic had been on the prev day and i had to wait 13 days to be seen.. i know to then thats nothing but for anyone seeing blood coming from their chest would be scary let alone my history of cancer in family and then faulty gene. eventually got seen and had biopsies done and all came back clear!!!! tomorrow is another day i feel slightly better this evening so heres hoping my mood either lifts or makes me complain prob to no avail..i just want to get this over and done with as i know its hanging over me.. anyway enough about me i hope your well.. thanks again for your support ostrich love lainey xxx
Hi Lainey, I know scotland has its own guidelines - its SIGN isn't it? Did a teeny bit of digging and found that out but it is difficult to find out both in Scotland and England what, if any, treatment deadlines should be worked towards regarding prophylatic mx (think thats right!). Do they have the Scottish equivalent of PALS or some other method of complaint? You may well be too fed up and pi**ed off to be bothered to go down that whole route and to be honest I can understand that but at least you may want to think about knowing what your rights are/avenues of complaint if you feel energised enough to take them on sometime.
Have you thought about searching for or starting a thread on here re prophylactic mx and the standards you can expect re treatment times etc both in England and Scotland? You may get some useful information and save some digging?
Either that or you could let me at em???? (sorry past life as a lawyer and current life as a PC kicking in!!!)
I will try some words of comfort rather than winding you up..........
You know you are at risk and are taking a huge step to prevent yourself falling victim to BC - that in itself is hugely brave. You don't yet have BC (fingers crossed and praise God) so the urgency is not so great. Take deep breaths and relax (easy huh?) You will get this sorted and can see is as a 2009 thing and to enjoy 2008 with boobs!! (hopefully you laughed then or smiled and were not horrendously offended). They are s**ts who are messing with your head and you will not allow yourself to be wound up........(more deep breaths)
Is it working???
Take care of you, sorry if I've wound you up/upset you or a multitude of other things I cannot think of now,
Much love, O
hi ostrich thanks for your reply, NICE doesnt cover scotland which is so frustrating also as that way i would get an mri instead of hoping a non reliable mammo picks up anything. not that im putting down mammograms its just they arent effective for a 32yr old.. i spoke to surgeons secretary aswell as receptionist in dept and its a no go. i have to wait. not sure how i feel now as im trying to stay calm but its hard. they would have known this b4 booking appt as the same the last time they have booked me in on 2 bank holidays b4 only to cancel them using the excuse its bank holiday again i have been annoyed at this... love lainey xx
That's terrible! How can they do that to you!?? They must have known its emergencies that day before they made the appt!!
Can't you kick up? There must be NICE guidelines or National Guidelines about preventative mx following dx as high risk as much as there are about getting treatment for BC once dx!!
4/12 is ages away, you'll be going nuts! AND feeling cr*p over xmas IF they manage to fit your surgery in before.
Cant you ring them up and 1) get angry 2) cry 3) demand a sooner appt?
Bless you, you must be really frustrated!
Don't take this lying down Lainey, the more I think about this as I type this post the more it makes ME mad and I'm not the one waiting. Please call them and demand that they keep their appt with you or fit you in somewhere else next week!
Much love, x
hi ostrich i told u they were ok i dont really eat fatty foods hence i have lost 5 stone 5lbs in 18 months. glad everything is going well ( as well as it can). i a little stressed now i had myself all ready to set date next fri and bc nurse has cancelled as emergencies at clinic that day only. they said it would be registrar only i could speak to but surgeon wants to see me too so its changed to 4/12/.. dont know why but i havent stopped crying since think its because i want this shit over with asap . i cant even have hrt till breasts are off and this delays it more. sorry ladies i know its not easy for anyone xx
Hi Lainey and girls,
Hope you enjoyed your relax Lainey. Did you get some Haribo whilst shopping? I bought some last night and ate them with my 10 year old whilst watching Holby City and I did check and yes, you are right, they aren't fattening! Hooray!
I have been to see my surgeon today and been discharged from him with an open appt to return should I have any concerns but other than that will see him when I have finished chemo to talk about nipples and uplifts. Somehow I get the feeling though that it will be a longer road waiting to get the "cosmetic" work done than it was to get my boob hacked off!!
He said he wasn't going to pick my scabs/necrosis off thank god and that they should heal themselves in time. He reckons in 3 months my boob will look brilliant (it looks pretty good now apart from the little bit and bruising and fact that it is hard as a melon!)
He only got 50mls of fluid out of my back which is half what it was last week (though I have to say I felt as bloated as I normally do the day before I see him) and said that I shouldn't need draining again as my body will reabsorb it but I can always call the BCN to arrange further draining should I so need/wish.
He also agreed that massaging my side (which is the sorest bit of me as it is a more solid bit of me that I never had before the op and is just under a drain site) will help to dispel the clot(s) that are there hopefully returning me to a more even looking left side.
He told me to keep on exercising as I can only raise my arm to 70 degrees at the moment and I think I am developing cording! I haven't been too good at exercising for fear that I would start oozing again!
It seems so odd writing this stuff sometimes that I can't believe I am talking about myself and oozing and draining and necrosis without falling to the floor in a dead faint with all this ucky talk that is now part of my life!!
So I suppose its move on from the surgery "phase" and into the chemo "phase" - I feel like I am moving through school or a training programme and graduating/moving onto the next phase!
Am planning a good weekend and next few days with family and OH and lots of online shopping before chemo starts and life passes me by in 3 week cycles and I realise that birthdays/christmas/life has passed by and I forgot about it until it was too late. Hopefully this way I can relax into my dressing gown with a clear conscience!!
Thinking of you Jenny and hoping you are ok, xxx
hi ostrich i have been out food shopping, done some tidying around house, going to have breakfast, strip bedding then relax a bit. im soooooooooooo tired. xx
Hope you are all well.
Off to see surgeon today for 3rd post op check up and can't wait to get there and be drained (weirdo or what!), my darn boob still has a spot where it intermittently starts to ooze brown stuff (uck) and my back scar is still not that healed in one spot and keeps bleeding! 4 weeks post surgery and its starting to pi** me off! Mind you the fact that I am smoking again can't be helping with the healing. There I said it! Guilty!
Went shopping at Boots yesterday to start getting some things on my chemo shopping list (from the top tips thread condensed by saddo here with too much time on her hands) but still seem to have too much to do in terms of shopping (its a hard life) and organising things before Tuesday! It seemed an age waiting for a date and now I am running out of time!!
Whats everyone else up to today?
We are here for you Jenny and thinking of you, x
ladies i hope jenny is ok im worrying she has went so quiet.. hope she is ok xxxxx
Dot, Hi, Christmas week will be week 3 so a good week, new year's week will be a week 1 so not so good for seeing out 2008 but I will be raising a glass to a better 2009!
A bang is a fringe! (My 20 year old daughter didn't know - she's sooo out of touch!)
Lainey - I have brought some Haribos to munch on this evening along with my prawns and guacamole in front of Holby! It'll be your fault if I get fat! LOL
Angela - you still out there? You ok?
Jenny? Are you okay honey? Thinking of you, xxx