Hi all,
Bright, I hadn’t heard of chemo burn. I hope they can sort it out quickly so you can get on with the chemo. Nothing seems to be easy when going through treatment.
Jo, I’m sorry you are going through so much. Why are some doctors so very insensitive? I would have thought a female doctor would have behaved differently.Ithink most women find it heard losing the things that make them feminine, hair, breasts ,ovaries,eyelashesand brows. And, no, men don’t get it!
Caron, I do enjoy reading your posts, but have felt so sad hearing about Marc.Life is so tough at times.
I@m still going to the doctorto be drained every few days.I’ll be glad when its finished as I want to visit family and friends inkent and Essex. I’m sseing the plastic surgeon on Friday. The appointment seems to have come round so quickly and I don’t feel I’ve had time to think about it.I haven’t even started rads yet!!
Hope everyone else is ok.
Kathy
.
Hi all,
Has anybody heard that you are automatically entitled to a blue badge while on chemo??
I heard that we are so I applied for one only to have it all sent back to me! with the exact same form only diffrently printed out all the same questions and they tell me to fill this form in !but it has to go to a diffrent address, don’t know if I will bother now it’s just all hassle.
My friend Anita came to see me last it’s the first time I have seen her since my diagnoses, and I think she was quite upset, I could tell she nearly started crying and she kept saying how brave I am , I said I am not brave I have no chioce but to go through all this.
She invited Owen to stop at her house this Friday to play with her son .
Bright how is your arm today???
Where is Andy gone ??? I noticed she has not written lately.
It is my magazine day today I do all the competitions and send them off ,I don’t know why, I never win owt !!! lol
love Caronx
I was interested by your blue badge query Caron and had a look at eligibility here. It definitely doesn’t fit the criteria in Suffolk as you have to be permanently disabled (i.e. likely to go on longer than 18 months) to get one. You might be entitled to free disabled parking at your hospital, though, as some places seem to allow that while you are receiving chemo. Maybe that’s where the confusion has arisen, or maybe different areas have different rules as to what qualifies for a blue badge. 
hi everyone,
im new to this site, (1st blog!)hoping to make some online friends for support and advice. i’m 28 and was diagnosed with bc a couple of weeks ago. i had surgery monday - wide local excision and axillary clearance- and still have a drain in. im feeling pretty fragile at the mo!
i think im still a bit shell shocked as i wasnt expecting all this! there is no history of bc in my family.
anyway… how does this work? what comes next? ive no idea what the process is although i have been told i will need chemo, radiotherapy and hormone therapy. is this the norm?
ive got to go get my pathology results wed. what will they tell me?
is it wrong that one of my main concerns is financial?? i live on my own and as much as people say to concentrate on getting better" i cant stop thinking… how am i going to pay the rent? etc!!
anyway suppose i better go and get on with things… i hope someone out there has some answers!!!
Jess x
Hi Jess - sorry you’ve had to join our club, and at such a young age! The best advice is to take it one step at a time, and not read too far ahead - you will probably have the full McCoy regarding Rads and Chemo, but everyone reacts differently and the scary stories are fortunately the rarer ones. Since I was diagnosed (about 6 weeks ago) it seems that every other person I meet has either had or knows someone who has had BC - “my mum had it thirty years ago, and she still plays tennis” is fairly common (tennis is apparently not complusory.)
And yes, it’s perfectly natural to worry about money - rent still needs to be paid. I think there’s an advice forum about benefits and stuff on here, I think MacMillan have an advice service, and you can go to the CAB.
Hi Jess
I am sorry to read of your recent diagnosis. Just to let you know BCC have an information booklet on ‘understanding your pathology report’ which you may find useful. If you would like a copy please go to this link:-
breastcancercare.org.uk/server/show/nav.718/changeTemplate/PublicationDisplay/publicationId/91
I hope you find this helpful.
Kind regards
Sam (BCC Facilitator)
Hi Jess
Outragous joining this club at your age, I’m 37 and had same, wide local excision and sample nodes. Unfortunately I had to go back again as they didn’t get clear margin, but not sure how common that is! Anyway, next step chemo and I’ve had to have 3 x FEC/ 3 x TAX, is your same? Have next Chemo on Mon and then the last one end of March, Hurrah. The stage you are now is the worst because it’s the fear of the unknown! Once you get into it you just have to kinda go with it. Like Caron said, people will tell you all the time how brave you are being, but the thing is, you don’t have a choice, it’s like a roller coster and once you’re on it, you can’t get off but for me know the end is in sight! I was terrified about Chemo, and no you have some pretty shitty days at times, but on the whole it’s nowhere near as bad as I’d imagined it would be, honestly! and i’ve gotta say, chemo really has whizzed by and before you know it, it will be time for rads! I start my rads at the end of April and at the same time I start tamxofin, are you the same, I wonder?
This is a horrible time for all of us, but you’ll get thru it and everyone on here is absolutely lovely and will offer lots of support and also some good laughs at times! It’s just a comfort to know you’re really not alone! Good luck with it all and be positive!!
Jo XX
Hi Jess,
sorry you have had to join us, but your here now and you will find that posting your worries ect is a problem halved as you will get lots os answers ect.
Everything moves wo quick you don’t have time to get your head around it all, just take one day at a time and don’t worry too much about future treatments , just take little steps at a time.
Also you are like Victoria (Brightlight) she had her op first and then started her chemo.
Your path results will probably tell you about clear margins ect.
Also Victoria ( Brightlight ) has used the cold cap and so far (touch wood) it HAS worked for her.
I was told I would loose my hair anyway so I never bothered but I wish I had given it a go now , as my hair was very long, the only thing my breast care nurse told me to consider that if you use the coldcap and have a stray cancer cell is near your scalp the use of the cold cap would therefore not kill that cancer cell ( but it is unlikely ).
Also there are really cheap wigs on ebay albeit from Hongkong they usually come within the week!!!.
Are you working??? maybe you could get sick pay??
Or if you have a mortgage I doubt if they would repossess if you ring them and tell them your circumstances.
You will have up days where you think nothing is wrong but also many down days we all do and it’s quite natural to feel down, but we try and cheer each other up along the way.
Back to my day yesterday !! well Jamie rang told us he was stuck in a field and couldn’t get out! we were going to go but I told him to ring RAC anyway the farmer got him out he wasn’t too happy either!
He made the RAC bloke gove him £5 and made Jamie give him £20.
Then later Jordan rings up at god knows what time !! saying he has broke the kick start on his ped (moped) so we had to drive to Cleethorpes and put the bike in the van then take Jordan to his girlfriends!!! wouldn’t have minded but he came home in a taxi 5 minutes later ! ( don’t know what the point of it was? )
Then this morning we had a phone call from Jamie’s boss saying he didn’t turn up for work yesterday morning and she said it was the second time he’d done this , so I have been trying to get in touch with him but his phone was off and when I did talk to him I said " you should have been in work yesterday at 5am" he just said " I don’t know" so I told him his job was at stake but he didn’t seem all that worried then he told me he had already recieved a written warning for being late! So I think thats it then and also I remembered that he said he had to get his girlfriend at 2 am and he was at work at 5am so it’s not as if he didn’t even know!! but their rent is £500 a month ans I don’t think he realises that no job no house!! no cat!! as if he gets a flat if he gets kicked out he probably won’t be able to take it with him ? and I’m not having it and I am not paying his rent either!
Thing I don’t understand it took him ages to get a shop floor job and now he’s messed it all up !
Anyway thats me done moaning !! love caron xx
Hi ladies
Sorry ive ben a bit quiet i havnt felt like talking much…
Im worried about the new lumps on my neck and i think the cancer is spreading,im trying to push it to the back of my mind and ignore them but i can feel their getting bigger.
I have my CT scan on Tuesday and an hour after that i see an Oncologist to get my consent to go ahead with the Rads, im hoping i will get my scan results on that day,i hope i dont have to wait weeks for the results as im worried sick already…
Iv been catching up on all your posts and i am thinking of you all, i hope your burn gets sorted out Bright,caron sorry to hear about Mark,you must be so worried.Betty sounds like shes a little minx…
Hi to all i havnt mentioned,i am thinking of you all…
Shell
xx
Shell - It is so good to hear from you and I just wish there was soemthing I could say or do to offer comfort. It all just sucks! I hope the scan and meeting go OK and I am keeping eveything crossed for you!!
Jo - Wanted to respond to your earlier post! So far this tax has behaved really well. I can’t believe it!! remember don’t worry about that allergic thing. It didn’t upset me and I hardly realised what was going on. Your onc sounds horrid. You really need to talk to someone about all this stuff. I will be facing the same issues Re: ovaries, injections etc and have a meeting with my Onc about it post surgery. But… I realise I’m in a differnet situation as you as I have little monster. However, I did have to get my head around the fact that I wasn’t going to have another child. For hubbie - not such an issue. he just wants me here!!! You must find a decent onc to talk to about it. It annoys me how some of them are so cold. I get down too and read things I shouldn’t. Going to my counsellor is helping. I should feel happy that chemo is over, but I don’t. I just feel scared. I’m not sure what I’ll do when all this treatment ends . I’ll be on Tomixifen too. I’m sure there are examples of hair thinning with it, BUT… for most women it doesn’t effect them in this way. We have to remember that we are our own story…something I find hard!!!
Jess - so sorry you have had to join us. But…please ask away. We have all helped each other through this terrible thing we have to face. You will find bravery you didn’t know you had. Re: practical stuff. Some hospitals have a “Maggies Information Centre”, attached to the cancer unit often. They are really good with advice and help.
Andie - hope you’re still healing well.
Caron - You really have your hands full with jamie!!! Boys!!!
Hope everyone has a good weekend.
Love,
GXXXXXXXXXX
Good to hear from Shelly you could have some kind of infection and thats why they are swollen, I know you (we all) think the worse though we will just have to hope on hope that you have some good news for once!!! hope they don’t leave you to worry for a week or two.
Andie thinking of you.
Gail what was the second reaction you had???
I just wonder if my second EC was a reaction ???
I think I should have had my period by now but nothing I thought I would with my bust hurting & stuff but seems to have gone off now.
Jo you will be ok just think not many more to go !!
Jess are you ok???
Bright bet you have gone out for the day???
Katemate how are you today???
hope I haven’t left anyone out? soz if I have.
Me & Steve were watching a really good film last night (Empire) anyway just got to the critical part and the last 15 minutes and itv went off!! and never came back on until the film had finished!!!
Have not heard nothing from Jamie so I presume he has lost his job?
Well thats me for now love to all Caronx
Hello ladies,
First to say that I have heard from Andie. She is still fine, but got a bit down I suspect with post-operative depression. I know I went through this. She still has one set of drains in, which she finds irritating but apart from that she is fine.
I have not written too much on the site for the last few days as my arm has been really sore which is a chemo burn. But the creams the dermatologist gave me seem to be improving things a bit.
Yes Caron, I did go shopping today - to Kingston. Just bought a new electric toothbrush and some food things. Tomorrow I am going to York for four days which includes a work trip, and then on Thursday I see oncologist to find out when I can resume chemo.
Hello Jess, sorry you have had to join us here and I hope you do well on the chemo.
Bright x
Bright,
Does that mean you can’t post for 4 days? or have you got a laptop that you will be taking with you ??
When I go in hospital I will deffo be taking my laptop as we have a dongle (internet wireless thing) so I will still be able to go on internet.
Spoke too soon about periods !! showed itself today really thought I had finished but last month nurse said if they haven’t stopped by now she doubts if they will so injection in stomach looming!!.
I had a nice surprise today from a neighbour turned up at the door with copious amounts of flowers for me !!
So amazing really how many flowers Ive had of people and even more cards , you don’t think people really care but I find most DO , I think I am surprised at people who I think would care (and don’t) and lots of people who I think wouldn’t care and DO !!.
Haven’t got much to write reall apart from Steve was running away from Betty and she thought she had cornered him and she was barking at him ( pathetic bark at that !! ) but it was funny !!.
Having sweet n sour chicken tonight with basmatti rice tonight still have not had it yet going to have it now (we were watching film).
Right night night all Love Caron xxxxxxxxxxxxxx
PS to Andie : you will be ok we all get times like this when we have to bring ourselves round I know it’s hard and even though your not writing I’m sure you are still reading, I don’t think I have known you down ( that’s usually ME !!!) but you will come round it’s hard to get out of I know and you will come round in your own time but trust me we are all thinking of you and hope you write soon xxx
love Caron xx
I will take laptop with me - so should be able to post xx
Hi Girls
Yes Caron you are right, I have been reading all your posts even though I have not been writing.
I am OK. All the dressings are off now and the wounds are healing fine. I still have one drain attached with is a real nuisance and at the moment there is no indication when they will remove it. I see the surgeon on wednesday for my op. results so he may decide to have it removed then. Evidently if you have your chemo first it is recognised that the drains take longer to clear. The fluid still draining has become very cloudy over the last 48 hours even though I feel OK so they have put me on antibiotics as a precaution.(That will probably mean that a bout of Thrush will follow - O JOY!!)
I am a very independant impatient being and am finding the restrictions involved in letting my body heal very frustrating. I am doing absolutely everything I have been told and not doing the forbidden things but look forward to moving on.
Take care everyone - I will post more in a few days. All look after yourselves at whatever stage of treatment you are at
Love
Andie.xxx
Poor you Andie,
thrush tell me about it!!! I haven’t had thrush yet with the chemo ( I think thats more Tax) but I did have a abcess in my tooth once and kept having to have antibiotics , then I had a really bad case of thrush ( I’d never had it before ) so I was a bit shy when I described my symtoms!.
When you have Tax do they give you the nystan as a precaution???
yes I read it does take longer for the drains to clear if you have been having chemo first.
Hey some good news!!! no coffee at mothers today!!! she has got a cold (again) so told me not to come!!.
Betty has been a good girl lately and doing her buisness outside.
Hope everyone is ok love Caron x
Hi Girls
Thought you might like to see the new picture. It is my cat called Molly that Bright told you about after we met. She is a British Shorthair Blue Cream aged approximately 5 years old.
As you may have guessed I am bored and playing on the computer.
Love
Andie
Hello Girls,
Glad to her from you shell and Andie.
Shell, as everyone says, try not to worry, rich coming from me I know, but still. Please God scan is clear and you cango ahead with rads ASAP. Will be thinking of your Tuesday, take care. X
Andie, Think it’s quiet normal to go thru a bit of a down time post surgery, BC nurse told me it’s anesthetic in your system as much as anything!
Gail, Feel a bit bad about my rant the other day about hormone stuff as really and truly, although I’ve been to hell and back to get my brood, I really am one of the incredibly lucky ones, who had 3 great kids. Sometimes though, going thru all this it’s very easy to focus on what we haven’t got and not what we have got!
caron, i had really bad thrush on 1st cycle of FEC. Onc gave me a 5 days course of stuff to sort it out, but touch wood, Didn’t need to use it as have been fine in that dept on every other chemo. Will see wot tomorrow brings though! Am terrified about this poss allegic reaction as I was talking to 1 girl last week and she was hospitalised after her reaction, and Mum and the kids are planning a party for me tomorrow evening, so don’t wanna be stuck in hospital for my birthday!!
Bright, hope you’re arm has improved enough for you to continue with chemo soon, I know you probably in no rush but we all think sooner you have it sooner it will be over!
Take care, must go, missing the skating!
Jo X
Hi ladies,
Cannot write too much as hands are sore. I have to stave off RSI every so often and tonight hands are really hurting.
Arrived in York this evening for a conference tomorrow. Very cold up here compared to London - where it was a warm spring day. We went round the town, and if the weather had been warmer would have done the ghost walk - but really too chilly. So settled for tea and toasted saffron fruit bread instead.
Glad to see you writing Andie- I’ll be in touch in a few days as soon as hands recover a bit.
Night night
Bright x
Hi ladies
I love the pic of your cat Andie, hope your feeling ok and not too sore.
Bright- sorry to here your hands still sore, hope it gets sorted soon.
Jo- I am trying not to worry too much but things just keep going wrong for me.
I have a red angry looking spot just below my scar, it looks like maybe 3 spots clustered together, i think its getting bigger and now im worried incase its skin mets…
I just feel so sick and helpless i dont know what to do or think any more…
Shell
xxxx