Do you work in a large company/dept? To be honest if the colleagues making the “jokes” don’t have that kind of relationship with you - you know - friends, where they actually care and support you and you laugh and banter with them (both ways) - and it sounds like they dont, I would be speaking to my line manager or doing what you are doing re the letter and asking them to clearly, tactfully and without making things difficult for you, to tell them to “grow up, understand what BRCA2 means and put themselves in your shoes and if they can’t do that then shut up”.
I’ve had nothing but support and kindness from my employers and my colleagues (who are 99% male) have been nothing but nice to me. When I chose to joke about stick on nipples etc they laughed with me but wouldn’t dream of making jokes without me initiating it and I would be horrified if they did.
Just come back from getting my dressing changed at the doctors, ,also been to dentist to have crown fitted this morning. My day is not complete without an appointment or too.
Have no appts tomorrow.
Weds have to go to Bristol to see surgeon re back and dressing changed
Thurs no appts but have to take youngest to dentists
Friday - see nurse for dressing change, see GP for sick note and anti-depressants and take youngest to see GP re a health issue of hers.
Sat - day off
Sun - day off
Monday - Oncologist am and bloods, nurse pm for dressings
Tuesday - kimo no 2
I don’t know when I would have the time to work!!!
I’d start by speaking to your manager’s manager if your manager is also making ridiculous remarks. Working for a large company they should take this seriously as its tantamount to workplace bullying, x
Jenny ,nice to hear from you.Glad you are managing to socialise AND work!
Ostrich,hope your wound is starting to behave itself.I agree about work,I don’t know how I will fit it in when the time comes LOL!
Lainey,I take my hat off to you. I think you are facing a much harder decision than me.I had disease so I went in to hospital and had an op.The disease has gone.
It is hard as with BC you have no sypmtoms apart from a lump ,no pain,coughs,sickness etc.Then you come home after the op with scars wound and aches and pains.I knew I had no choice so that made it easier ,but you have choice (albeit a totally cr*p one) which makes it so much harder,I think you are doing the right thing and are very brave in doing so.It will be hard but the results will be worth it,a long and healthy future like you deserve.
I hope you understand what I am trying to say. xx
Just back from our weekend away,we had a fabulous time.The “girls” had a great day in a Spa on Saturday .However the mens day, clay pigeon shooting and quad biking was cancelled at the last minute.So they went to the pub!
The therapist massaged my back scar and surrounding tissue and it feels so much more “free” Might have to get some massage locally,will see if BCN can recommend someone.Physio appts seem like gold dust at my hospital.
Just sitting with my feet up recovering form the weekend!
OH is on holiday this week so might not be on much,hope everyone is well,
Hi Dot, i understand what you have said and i do agree i have choice which is worse as i always question my intentions. its true what ostrich said regarding if she was adv she had 855 chance of winning lottery she would definately put a ticket on. my friend plays poker and again she said if she was told she has 85% risk of losing she would not play and thatshow i feel my odds are too high to gamble with. Im glad you had a nice weekend away its always great to have a break especially given what you are going through. i love massages and they benefit us more than we think. i had a few while on holiday this year and they were dreamy. well worth the 80 euros. take care of yourself and have a lovely week with hubby being off work, enjoy some well earned tlc. love lainey xxxxxxx
Glad you are back and had a good time! Glad the physio helped - it must be nice to feel freer in how you move, x I have always been a “lets enjoy life” girl and my greatest wish/need is to store up memories of good times with loved ones.
Just popped on as I forgot to say in my busy social calender
Saturday - dinner party with best friends and next door neighbours - always LOTS of fun and very drunk
Sunday - celebrate with daughter who will have been 20 (eek!) on the Saturday but too drunk to celebrate with us and her Granny
Monday - Weston Carnival in the evening.
Its been a bit quiet on our thread the last day or so, is everyone ok?
Dot, hope you recovered from your weekend? Are you back to work yet?
Lainey, how are you feeling now? Anymore research and thoughts about how you want to go?
I’m off to the hospital in Bristol today for another check on my wound.
One of my friends is a tissue viability specialist nurse (how lucky am i?) and has been dressing it for me in between nurse and hospital visits as the dressings are only lasting 24 hours and it saves me seeing the nurses everyday. She said I could have had maggots to help get rid of the scuff (yellow icky dead tissue which needs to go before the wound can heal) -OMG!! Apparently they are bred for the purpose somewhere in Bridgend and sterile (maggots sterile!) and contained within a tea bag type thingy and would have eaten all my scuff in about 3 days (as opposed to the 2 weeks so far)! UCK!!! I could only have gone for that if they had put me in a medically induced coma for the 3 days! The thought of them chewing away at me whilst I wander around doing the housework is horrendous! No thanks! My friend thinks the scuff is nearly loose enough to come off, hopefully in the next couple of days, and then the wound can really start to heal. Hooray! It may still take several weeks to a month to close over but I am learning to be patient!
I am going into my old workplace after the hospital to see my friends there before coming home for the big shave tonight!! My hair is literally hanging by a thread and if I touch it about 20 hairs fall out so brushing it causes a small mountain! Thankfully its been organised in its departure so there are no bald bits just an awful lot thinner and colder!! Shaving it off tonight will give me a couple of days to stare miserably in the mirror before I have to face people, other than my GP and dentist and mum, before my OH and I go to a dinner party for 6 on Saturday!
hi ostrich i’m fine thanks. i once watched a documentary on maggots being used for this purpose and it looked yuck the thought of them wriggling about my wounds makes me feel sick. however i do think its amazing what they can do now. my hubby uses maggots for fishing and we almost divorced when i found a tub of them in the fridge, yes they were wrapped up and away from food but yuck. i spoke to macmillian genetic nurse about the new recon and was adv i have best surgeon already and i would struggle to get a referral. i e-mailed that hospital also for more info and was advised everyting is at very early stages and they have had an overwhelming amount of interest. however this method will be trained to all surgeons in the near future. i feel that i cant wait its not that im inpatient well infact i am inpatient i want it over with asap. i am swaying towards using my stomach as i saw pics on a breast cancer site and they look more natural. and this might sound bad but i now think if they have to use tissue and muscle i may as well have my tummy sorted at the same time. oh i have read that back and it sounds wrong i hope you’s know what i mean. i have lost 5st lb in just over 18 months and while my tummy isnt yucky there is an overhang there. im fed up being self concious about my body(usually my breasts as they are so big) so maybe i will feel better. cant believe im not editing this. its not my only reason as boobs done using stomach do look better in my opinion…
have a good day today and let me know how you are later after you have shaved. lots and lots of love lainey xx
I have just about recovered from my weekend!
I could get used to spas etc.
No date for return to work yet as Occ Health tell me I need longer! I think its my depression that they are concerned about as well as the fact I had problems with my previous returns to work after my foot surgery (I was “forced” to do things I was not meant to do)
I do feel better this week but I have had good weeks before and dropped back down that hole again after.
Ostrich,sorry to hear your hair has packed its bags! I hope the big shave goes OK,it must be an awful thing to have to do,my heart goes out to you.BUT remember you are only having to do it because the kimo is doing its job so well!
Also no more hair washing just plonk your wig on and off you go! Mind you in this windy weather there may be some embarrasing moments ahead! A lady I met at my stress class said she wore her wig to the dentist and was terrified that when she sat up it would still be lying on the chair,so be careful!
As for maggots …eh yeuckkkkkkkkkkkkk!
Lainey,Its a big decision isn’t it? Tummy,back or implants?
I have to say that the tissue recons(LD,tram or DIEP) do look much more natural than the implant ones.I had a LD recon with a small implant and I have to say it looks good,just weird as it has no nipple.But in my bra or swimming cossie ,you would never know.I worked in mammography about 12 years ago and remember the recons looking a bit false/bizarre in those days but mine is so much better.I am a wee bit disappointed that my scar is so big,its elliptical and much bigger than my nipple.It sounds like others just have a scar in the shape of their nipple.
I also thought about the tummy one so I could get a flat tummy! Plenty tissue there! But its a wee bit more risky and it would have delayed my operation,so I plumped for the LD and have no regrets.The other thing that spooked me was that they move your belly button!
OH is taking me for lunch ,no idea where yet!
Love to all,((((((((((((((hugs to Ostrich for the big shave)))))))))))))))))))))))
The freebie one was good. The NHS one (yes, I did choose it) looks awful. I found a wig shop on e-bay yesterday and ordered a wig. It was only £30 so I was skeptical. It arrived today and its fantastic!!! Its like my own hair but better!!! Fuller, better condition, slightly longer (and I always wanted my hair slightly longer but it wouldn’t grow)!!!
Soooooooooo happy as hair is coming out in handfuls and had decided to go for the big shave tonight and no I’m not so worried!!!
Just have to pass the “does it look like a wig” test which my friend is coming round to do later but if it does I shall wear it with confidence and a great big smile! Have been walking round the house grinning at myself in mirrors and letting my lucious locks sway!!!
hi ostrich, fantastic im so happy for you. it must be such a relief.some wigs just dont look good at all.please let me know how u get on. love lainey xx
Great news ,It will make such a difference if you like your wig.Good old ebay!
One note of caution,don’t lean over the cooker or into the oven,my Mums wig got frazzled at the front and that was what had happened!
Had a lovely lunch and OH bought me a bracelet in a wee gift shop and a charm for my pandora bracelet as part of my Christmas.He normally does his chrimbo shopping on christmas eve! Oh and a bangle that takes pandora charms! I am getting spoiled,will have to make the most of it!
Well just done the big shave - a no 1 all over! OH and daughter say it doesn’t look too bad and quite good actually. Its not as horrific as I thought it would be though I still have a hairline of sorts so not sure if it will be worse when the stubble falls out. Its very cold without hair though! Still loving the wig and have ordered a second - for the very reason you say Dot! The instructions on all the wigs say “take care on opening oven doors”. As I often fail to take my glasses off when pottering round the house and have often opened the oven door to find myself steamed up this is a real risk!
Dot, sounds great to be spoiled with gifts and a nice lunch! Your OH sounds like a nice bloke!
Well did the big shave on Weds night. Not too bad. I wasnt upset at all and dont think I look too horrendous. OH and daughter said I look like GI Jane, me I think I look like some alien woman on star trek! Still have stubble (slightly less than a No1) but is easier to cope with that falling out than long strands. Don’t know what I’ll look like when its all white and shiny!
Went out in the wig last night after having the “WIG!” test by my friend. Everyone has said that it definately doesn’t look like a wig and I feel very happy in it, if a wee bit paranoid when someone looks at me that they are looking at my hair. Went out in it again today shopping and no small children pointed and shouted “that lady’s wearing a wig!” so seems ok. Its a bit itchy though and I couldn’t wait to take it off when I got home!
Its very cold without hair though and I have to wear a headscarf indoors and a sleep cap when I go to bed otherwise I’d freeze to death.
My employers continue to be amazing. Had an enormous bunch of flowers arrive today from the command team at the Station (the chief superintendant etc) and my sargeant came round with a gift that the benevolant fund had given her money for - a Wii, Wii fit and balance board, all the trimmings, games, steering wheels x 2, golf clubs, tennis rackets - every single Wii thing you could think off!!! OMG I am soooo blessed!
BC may be cr*p but I have had some amazing love, kindness and gifts from people and friends that I never knew cared so much.
Hope you are all doing okay? Anything exciting planned for the weekend Dot? How’s the decision making going Lainey? How are you Jenny?
I am knackered ,me and my OH have spent the day clearing out our spare room and building a self assembly wardrobe! All because my Auntie is coming to visit for 3 nights at the end of the month!She lives in Spain so is over visiting relations. We thought she might like somewhere to hang her clothes and the old wardrobe was falling to bits,we inherited it with the house 11 years ago so it doesn’t owe us anything.
I am shocked just how much cr*p was stuffed in that room!
Got good news that my smear was normal,I had worked myself up that it would be the next thing to go wrong with me.Thank goodness its normal!
Ostrich,Glad the wig/hair is going fine,I really do feel for any woman losing her hair so I think you are so plucky dealing with it so well.Mine is a mess today as I didn’t wash it this morning ,so will go for a shower before we send for take-away for a treat.
How brill is that,getting all that wii stuff from your colleagues! I never even got flowers from mine! Well I got some from individuals but none from the dept!
Nothing exciting planned this weekend ,we will still be clearing our feet after todays clearout!
Off to jump in the shower,
Love to all,hope you are OK Jenny (and lainey too!)
Just popped on to say hi, hope you all had a good weekend.
I have been enjoying the last few days of my good week before my 2nd kimo on Tuesday and consequent hours at the hospital tomorrow to see Onc and have bloods done.
Still loving the wig, have done the acid test and asked friends and family for honest opinion and small children and all good. No-one thought it looked like a wig and even had a teenage girl I know comment on how good my hair was looking and had I had it done!
My eldest was 20 on Saturday so cooked a big family roast today and played on the Wii.
Had a fab evening with our best friends last night at a dinner party at theirs.
Planning a nice night in with youngest tomorrow night before kimo on the Wii as OH is away.
Just off to bed now, will check in later in the week, xx
Glad to hear you sounding so good,I hope the second helping of Kimo is no worse than the first.Glad you love the wig,that must make all the difference.
I handed a whole load of toiletries in to my Maggies for the Christmas fayre,and realised I had handed in some Trevor Sorbie Long hair Serum! Oops ,I hope no-one thinks its insensitive! Not all cancer patients lose their hair I suppose!
I have handed in 2 boxes of books and 2 boxes of toiletries,from my clear out! I am a terrible hoarder and am addicted to smellies!
As long as they get something in return for the things I am happy.I am also doing some hampers for the tombola as "bigger " prizes to get more interest.
Have a nice evening,and good luck for tomorrow.
I thought I posted here earlier but it seems to have disappeared or I inadvertently posted it elsewhere!
I too love smellies Dot and tend to open all the new ones and then end up with loads of open smellies! I sorted my bedroom the other day too and had a good clear out, even putting older stuff (smellies) to the front and newer stuff away in a storage cupboard, sorted my hair drawer and put them away for now and replaced with wig brush and head scarves/sleep caps etc. I even tidied out my make up drawer and feel much better for it!
Glad you have had a good week! Its nice when you feel good and happy. I too have thoroughly enjoyed my good week and will now look forward 2 weeks for the next one!
Funnily enough after all my winging about wanting a deep bubbly bath I got into my waist high bath the other night and caught sight of this bald lady getting in and thought, why the fuss? What have I got to wash other than skin? Its not like I am going to be surrounding myself with hair treatments, razors etc - all the usual things I do when having a bath! Ce la vie!
Just had my 2nd FEC and come home with my goodie bag of drugs with additional drugs for cold sores, extra doses of steroids (as Onc said yesterday that the sudden stop prob made me fall down hole last time and gradual decrease should lessen that this time), injection and sharps box for syringe for G-CSF drug which has to be injected tomorrow to keep my white cells up a bit so that I don’t get an infection in my back! What with the anti-heartburn and anti sickness tablets I shall be rattling!
Have decided to speak to my surgeon next Weds about surgery to repair my back rather than the current treatment. My nurse friend (who is kindly doing my injection tomorrow as I don’t think I can do it myself!) has said that the sluff (yellow ucky tissue) will take several weeks more to dissolve and then the wound will need packing every day with seaweed so that it heals from the bottom out rather than the edges healing and the inside not leaving a void and that that will take a couple of months!!! She said that under general they could clean off the scuff and sew me up from the inside out which would give a better cosmetic result. I know what I would rather have cos at this rate my wound is still not going to be healed when I finish chemo!
Lainey, hope you are okay. How are things with work?
Jenny, hope you are okay, I have sent you an email with the website I mentioned that has a topic for phyllodes tumours. Sorry it took so long.
Going to go and open some packets for tea and then collapse on the sofa, xxx
LOL! I am the same re smellies and have a bathroom full of half used shower gels etc! And a wardrobe full of unused shower gel,shampoo,bath foam etc etc
We often joke that while we may starve in this house ,we will always be clean!
Hope this round of FEC goes OK and you manage all your drugs! I don’t envy you having to have an injection.Does it go in your tummy or arm(or bum?)? I hated the ones in my tummy while in hospital ?heparin?
It seems sensible to get your back wound sorted surgically especially if will be a better cosmetic result.Plus surely, to heal quicker would be better
I am slowly getting to realise my surgeons favourite phrase is “it’ll take time” I bet anything thats what he will say on Tuesday about the tightness across my back!
It has actually eased quite a bit ,but I will keep my appt to get it checked and I have a few questions to ask.
Take care and look after yourself!
Love
Dot
xx
Just climed out from under the duvet, felt pretty uck this morning.
Exactly 24 hours after my kimo my back wound has just exploded covering me in yellow runny uck - right through my dressings! This is what happened after my first kimo when my back wound opened up originally! Fed up! My nurse friend is coming round tonight to change my dressings and the only thing I can hope is that the explosion is the rest of the sluff disappearing and I will have a cleanish wound that can begin to heal. The worst would be if the healthy tissue that has been appearing around the sluff has gone sluffy - I don’t know what I will do if that is the case!
I have left a message with my BCN about this and about surgery to fix the wound. Maybe they will have to delay kimo for it to be successful if this is what is going to happen every 3 weeks or maybe I won’t be able to consider surgery until after the kimo ends on the 10th Feb which means another 14 weeks of dressings at least!!!
The injection just has to be intramuscular so can be arm, tummy or leg or bum. I think I choose arm even though my right arm is a pin cushion these days. Certainly not the tummy - I too had them in hospital and they HURT!!!
They say time is a healer - particularly surgeons. Bleeding patience! Something I am trying so hard to cultivate but do find myself wishing I had never gone to the docs about my lump - we were doing fine rubbing along nicely together - I wasn’t causing it any problems and it wasn’t causing me any (yet!). I know its a silly thing to say but when this disease turns your life on its head you do think - why didn’t I just leave it! Its the Ostrich in me thinking - “see - you were better off with your head in the sand - now look what you’ve gone and done!!”
My nurse friend who is dressing my wound in between the GP nurses for me and is has turned out to be a blessing (she is a private tissue viability specialist nurse who the hospital are happy to have dress me instead of going to the GP every 2 days) came over tonight and cleaned me up and re-dressed it and said the wound is still fine and is in fact healing from the bottom up even though there is still some sluff and she doesn’t think they would stitch it now as its not so deep. An improvement since she saw it on Sunday so thats good!
She also gave me my G-CSF (is that right?) injection today too.
Feeling a lot more positive than earlier and hoping that the wound may well heal by the time chemo stops if not before meaning I can go back to my job asap!
