Hi everybody, Ive recently been diagnosed with breast cancer and had a full mastectomy and reconstruction in May. I should be starting my chemo within the next few weeks. It has been great reading through the comments on here and very helpful and I would just love to chat with anyone from here for any advice or help you could give me. Thanks very much.
Joanne x
Hi Joanne,
Ask away hunny, we will be more than happy to help.
Where abouts are you from? I am from Ballymena
Lisa
xoxo
Hi Lisa
Thanks very much for your reply. Im from Ballynahinch in Co Down and I guess I’d just be grateful for any tips you’ve maybe learnt along the way that would be helpful. Im not looking forward to starting the chemo as I absolutely hate being sick and obviously not looking forward to losing my hair. Is there anywhere you found better for hats/scarves or anything you can recommend for the sickness.
How are you - have you had your treatment?
Jo x
I start my treatment on Wed, first of 6.
You may get more help in the ‘newly diagnosed’ threads but also check out the ‘undergoing treatment - chemotherapy’ ones.
There is a thread called ‘Top Tips for chemo’ it tells you loads of things that some ladies have found useful during the chemo.
I think the best advice is that everyone reacts differently but I am preparing for the worst.
I will let you know more on Wed when I have had my first session.
There are a couple of websites you can check for the hair loss, headware.com I think and also people recommend wearing buffs, google them or you can get them in bike shops.
Also Sissley are doing a lot of scarves at the moment and so are H & M but it depends on what you are looking for really.
What age are you, if you don’t mind me asking? We also have another thread on here called ‘32 from N. Ireland’ there seems to be only about 4 of us, including you.
I really don’t know what else to say hunny, but if there is anything you want to ask feel free.
There is always someone on here prepared to give you a reply or point you in the right direction.
Take care
Lisa
xoxo
Hi Lisa
Ive been reading through lots of the threads and like you say we all react differently so I guess we’re just gonna have to wait and see what happens. I hope all goes well for you on Wednesday, I don’t know about you but I just want to get started so that I can get closer to the end.
Im 41 by the way and separated with two boys aged 17 and 14. The younger one is finding it all hard to deal with and has been acting up a bit in school, the older one has been great and changed from grumpy teenager who only grunted in my direction to doing anything I ask him to do and looking after me.
Its just nice to talk to others going through the same feelings, especially who live here.
My mum just loves Ballymena for the shopping!
Be thinkin of you on Wed, take care
Jo x
Hi Joanne,
Im ahead of you in this horrible treatment. Im 42, but also from Ballynahinch! ive 3 kids 13, 10 and 7 boy in middle…I was diagnosed oct 2006. I had partial mastectomy, chemo, rads, just finished herceptin, going for oophrectomy on 9th july, on tamoxafen… Its a diable but long journey…are you attending BCH? or UHD? im BCH… My kids are a nit younger than yours, but my daughter then 11, now 13 is the most worried about me, the others dont understand…Alex took it particularly hard when my mum was diagnosed 6 months after me…we are the main adults in their lives as ex has a severe bi-polar disorder. School has been very supportive…i wrote/rang the schools and they have been very supportive. I also got bandanas ect on the internet, but i just wore them in the house, i was never brave enough to leave the house without my wig. Unfortunately my hair took ages to grow back, darker but curlier than it had ever been, a year on i had highlights done last week and feel better, i think this was a side effect to herceptin. On the bright side i wasnt sick on chemo, but im still very fatigued…or maybe just a moody b*t*h!
Hi lisa glad to read youve had your first chemo, hope you feel ok, if you are sick they can change the antiemetics for the next treatment, you shouldnt have to suffer.
Good luck with your treatments,
Jill
Hi Jill
So good to hear from you and especially being from Ballynahinch! Im attending BCH, Miss Refsum was my surgeon and Dr Clayton is my oncologist. My chemo is due to start on Monday 7th July. Im having FEC - what sort did you have? That must have been a terrible shock for you all when your mum was diagnosed as well, how is she doing now? Its really tough on the kids isnt it, my dad passed away 3 and a half years ago with renal cancer so I think that’s at the back of my youngest’s mind.
Did you get your wig at the hospital or buy it somewhere else? I definitely dont think Id be going out without mine - Im too vain! It must be great to have your hair starting to grow back - although why does everybodys hair always seem to come back curly? Its taken me years to get mine long and straight and I so dont want to be short and curly!
Have you met up with any other people locally or gone to any support groups etc (I dont even know if there is any here).
Lisa - hope you’re doing okay. I seen on one of the other threads that you were feeling sick last night but hopefully you’ll feel better today.
Take care
Joanne
Hi Joanne and Jill,
Yeah I am feeling much better today than last night, really bad last night so will talk about getting anti-sickness drug changed for next stint.
I picked a wig yesterday but not sure if I’ll like it, I am getting my hair cut up really short tomorrow, nothing unusual as I had it short for about 12 years.
Will see next week what the wig looks like, my mum still keeps holding on the glimmer of hope that it won’t fall out.
Hope all is well
Love and hugs
Lisa
xoxo
Hi Joanne and Lisa,
Lisa , i hope you are feeling better and getting lots of support at home. Everyone is different, but for my my white cell count got too low so i had to have an injection at practice nurse on day 2 to prevent infection… but apparently lucky to get it as some dont fund it…I wasnt sick, but ok day 1,2 and 3 then had about 10 days of being knackered ie do school run then home to bed for a couple of hours intween shopping and house work and school runs…felt the govt should provide our kids free dinners so at least we wouldnt have to make lunches and could get away with less hassle for dinner!!..But with 3 it would be £120 per month…no chance!Are you on Fec too?Are either of you getting Herceptin?
Joanne, as ive said i too was FEC , ill be honest and for me the 4th one was awful as id such a sore mouth and ulcers throughout my Gi tract, they reduced the dose of the last two… My surgeon is Mr Wilkinson and onc Dr Clarke. I got my wig through hairdressers at BCH, my mad best friend insisted on buying me it for Christmas, and first nite with it in was work Christmas dinner in Madisons…am i mad or what! But i figured if i didnt go then it would be harder, im vain too…Sorry to depress you, the day i got wig was exactly day14 after first FEC, was drining down to get wig and meet friend, my hair left a reail out the window from Ballynahinch through Carryduff to BCH!..We went straight to the Chelsea, as we did waiting for chemo the first day!..Maintain your sense of humour, try to still have a social life. My hair is now as straight as it was only layered whilst i wait for it to grow…ive bought the mens ghd straighteners!
It will surprise you both how you get used to the wig and how quickly you can get ready. Also asak to get on the Look Good Feel Better Day, there is a waiting list, mine was week after chemo finished but got £200 of freebies (lancome, clingue ect) and more importantly first make up lesson ive had in my life, and also showed me how to draw eyebrows on! I lost hair in total! Even now barely need to sheve my legs, but i suppose i think it must be working.
I havent joined any groups over here and only chatted to other NI girls on here. With children we do have different issues than others.
Joanne im sorry to hear re your father, mine died 5 years ago , although hed prostate cancer, he died very sudddenly due to a possible side effect of a drug…Kids do find it hard. The same year my ex mother in law died of Bc…so my 13 yr is probaly more anxious than she tells me. Life is tough…but chin up and pour a glass of vino, throughout this whole experience i have lost my appetite, but sadly havent gone off wine!!
Sorry to ramble…wish i was at Kylie tonight!!
Best wishes,
Jill
Hi Jill,
Yeah I am on 3xFEC then 3Xdoc.
The first night was bloody awful but have been fine since.
Feel tried and shivery but other than that grand.
I am going today to get my hair chopped off, back to the short days from a couple of years ago so hopefully won’t be too upsetting.
I get my wig next week, taking my mum to make sure she approves, not sure I’ll like it mind you.
I have 3 bruises on my right arm from them taking blood and the butterfly, the blood one is the worst it was my Dr’s surgery, I knew when I saw the wee girl it was going to be a disaster.
I felt like screaming at her about how important my veins were but didn’t.
The butterfly ones are tiny in comparison. I now have had 2 bouts of hiccups which I am told is a side affect, so have to eat when I get them.
Trying not to eat too much as I have already put on 6 kg in this whole ordeal neew to get control of that.
Life is pants, this disease affects too many lives, hence all the work I try to for Cancer research, someday we will kick this thing in the teeth.
Love and hugs Ladies
Lisa
xoxo
Hi Jo
I am five years on from diagnosis (very nasty one at that) and still here kicking and screaming, you can get through it, cry when you want to but try and squueze some laughter in aswell.
Love to you
Nikki x
Hi
I am from Lurgan. I was diagnosed December 2006 and had a lumpectemy and then in jan i had a full masectomy. I had FEC as well I ended up in the hospital after the first one due to my temp being above 38 but thankfully I had no major infection just a low white blood count this happened another two times. The advice i would give to anyone is to try and stay positive, i used to pray a lot. To keep an eye on your temp especially around day 10 of treatment. To take lactolose a couple of days before chemo because it can really constipate you. Fresh pineapple is great for mouth ulcers. I joined the Ulster Cancer Foundation Lavender Group its a support group that meets every 4th Tuesday for young women who have had breast cancer. I read above about how quickly you get to the wig. My hair came out naturally but I know women who have just shaved it all off. Dont listen to horror stories of chemo they are like labpour stories yes some people can be very sick but some people can sail through it with only minor blips i hope you all are the later
tale care marykate
Hi ,
Welcome Marykate, is the Lavender group held in Eglantine Ave Belfast? Can you just turn up or do you phone them? I might consider going to a meeting, What happens at them?
Lisa,
I really feel for you re your veins…my veins were good prior to chemo, but got worse with teach treatment.but i got a shock during appt for herceptin planning, the onc was very insistent on me having a picc line in…With hind sight i wish they had offered it during the shorter duration of chemo…I really didnt want it for a year as it was an outwardly reminder of cancer, noticable to others, i thought it would restrict my choice of returning to work (in a hospital), also it was last summer and i had just bought a static caravan on lough erne and my kids were always swimming and you have to keep them dry…So i refused…Ok it was a 3weekly fight with my veins, but for me it was worth it…
You might like to consider a line, there are other types, the picc in inserted in the arm, because the chemo is shorter, after all youve one cycle down now …you would only need it in for a max of 15 weeks and it preserves your veins…I wish i had…Its very hard to get a routine blood test now…Are you getting Hercetin? It is much less damaging on the veins…I just refused the picc line because i was annoyed i wasnt offered it during chemo…as its the FEC which wrecked my veins…
Im glad you are feeling better and good luck with the wig,
Sorry to ramble again,
Jill xx
Hi everybody and thanks so much for all the comments.
Jill - So sorry to hear about your dad and ex mother in law too. Its hardly surprising your daughter is having problems coming to terms with it. I think so long as we are just there for them and make sure to be open and keep talking with them they’ll get through it. You really made me laugh talking about your hair going out the window. It must have been such a shock but at least you can laugh about it. I think I’ve reached the point where I just know its gonna happen so I need to stop stressing about it and just accept it as another thing Ive gotta deal with. The only good thing is that is will certainly cut down on the time to get ready and save me a fortune on trips to the hairdressers to cover up all the grey ones.
Lisa - I hope you’re feeling much better today and the sickness has eased. As if having bc isnt enough then to have all the problems with veins and bloods etc is just crappy but from what Ive read so far seems to be pretty common. How did your hair turn out? My mum is like yours and just hoping and praying that mine will hold on. I have a feeling that the hairs that will hold on is the ones on the rest of my body that I would love to lose!
Nikki - thanks for your comment, its always good to hear from people who are so much further down the line in this journey. At the minute I feel as if im wishing my life away just trying to get to the next stage. I need to learn to slow down and just get through each thing as it happens.
Marykate - I have quite a few relatives who live in Lurgan, my dad was originally from there so I know it well - not too far away from me. I’d also be interested in learning more about the Lavender group - does it have an age limit if its for younger women? I do think it’d be good to chat to other people face to face who know how youre feeling. As for the constipation unfortunately Ive already had that lovely experience due to the painkillers I was on so will def take your advice. And I totally understand the comments about labour, think its just fear of the unknown and everybody always has a real horror story to tell you.
Well ladies hope you are all keeping well and I haven’t put you all to sleep with my rambling on
Take care
Joanne x
Hi Joanne,
Cant sleep tonight…Ballynahinch!..went to get a KFC…couldnt get back into the town and my kids hyper!..
I had hoped to hold on to my hair too…but sadly without the cold cap it is unlikely…BCH say chemo is less effective with it, or more cynically is it cost implications?
If you arnt getting herceptin your hair will be great this time next year…really it will!
I hope your children are coming to terms with it…older teenagers have their own issues and its prob uncool to discuss it!..My daughter s head of year cried with her when i was diagnosed…but sadly shes off with ovarian ca, so must have had a family history…but my daughter in first year was supporting her|!!The teacher called into today, Alex said it was obviously a wig and questioned her on my hair growth ect!! (this teacher had lovely long,curly black hair…v hard to get a similar wig…my blond bob was too common!!)
So, its got me thinking other young women do need support, maybe this lavender meeting would be useful
Nite,
Jill x
Hi Jill
Yea Ballynahinch was a bit hectic last night, hope you enjoyed your KFC, sounds good right now but I couldnt be bothered going out, got absolutely no energy.
Re. the cold cap I did ask my oncologist about it but she said that she was against it as she felt it didnt make sense. In her words - the purpose of chemo is to go round the whole body and destroy any random cancer cells but the cold cap stops the blood from flowing round the head so if there happened to be any cells there they wouldn’t get destroyed. To be honest it kinda made sense to me and from what Ive read on here nobody seems to keep their full hair even with the cap, it seems to thin a lot.
My older son is 17 and has been really fantastic. He is always saying sit down mum and Ill do that for you and hasnt complained when I ask him to help with housework etc. Its the younger one (14) who is def struggling but we had a good chat about it all the other day so I hope he’s a wee bit clearer in his head. Your poor daughter seems to be just surrounded with adults with cancer. The Mcmillan people have said there is help out there for them and if Im interested to just ask about it so its something to keep in mind.
I think Ill find out about my wig when I go for first chemo, hope they can do long dark brown hair! Or maybe I should go for a total change and get a blond bob.
I would def be interested in finding out more or going to the lavender meeting if you’re up for it too.
Hope you slept well.
Joanne x
Hi Joanne and Jill,
The lavender group meets every 4th Tueesday in Eglantine Ave Belfast it has helped me as you are talking to other women who have gone through similar experiences and actually know what you are taling about. Sometimes they just hold open meetings and sometimes they invite people to speak. I think the UCF run a generic group in the Millbrook in ballynahinch you would need to check and I Know they run one in newcastle and Craigavon. The lavender group doesn’t meet again until September the 4th Tuesday 7pm to 830pm.
Take care Marykate
Hi Joanne, MaryKate, Lisa, Neenie ect,
I hope the hair searching is going ok for Joanne and Neenie…Btw Joanne , ive a blond bob wig if you want to try it!
Marykate, thanks for the info, i would love to go to a meeting , Eglantine or Millbrook, or both!
Joanne, good luck with first chemo, hope Lisa is still feeling ok…Im back in BCH next week for oophrectomy, in for 2/3 days, best benefit is another summer off work! but why is the weather so
bad! You are lucky with your 17 year old, hopefully the 14 year old will come round…Its really tough on kids coping with divorce and serious illness at the same time, and hormones!
Yours,
Jill xxx
Hi everybody
Havent been on in a while cos stupid laptop gave up the ghost, surprising how much you miss it. My first chemo was due to start on Monday but at last minute they postponed it again till Friday due to a few problems they are having with my heart and wanting to do more tests. So frustrating when you’re all built up for it but better to be safe than sorry.
Met with the hairdresser and came away very disillusioned and upset with what she showed me - looked like those wigs you see on window dummies in cheap little backstreet boutiques! However next day got a call to come down and look at some wigs she had got in. Went to McMillan centre which was really lovely and was really impressed with the wigs. Got one almost exactly like my own hair except its at least 6 inches longer - they said they could cut it but I think I’ll keep the extra length for now. Also got some hats and scarves in H&M - they had a really good selection.
Jill - hope your oophrectomy went well and you’re recovering okay although I must ask what exactly is an oophrectomy? As for your summer off work - its not looking too hot weatherwise so far, lets hope it picks up.
I did check the Ulster Cancer Foundation website but couldn’t seem to find the support groups for Millbrook. Maybe we should start our own.
Lisa - hope you got over your first round of chemo alright. Only good thing is now you know what to expect or maybe thats not so good!
Hope everybody else is well.
Joanne xx
Hey ladies,
Joanne, sorry they have put it back again but as you say better to be safe than sorry. I hate my wig and on another thread talked about putting it on a remote control car and using it as a mini Cousin It from the Adams Family.
The chemo wasn’t that bad. I am on 3xFEC and then 3Xdoc. I was sick the first night and into the early hours. felt like i had the mother of all hangovers the next day but as we get further away I am feeling great. Had my day 15 bloods taken yesterday and actually have low neutrophils so I am on 5 days of AB’s, poo.
Jill - how are you doing babes? I hope it wasn’t too rough on ya.
Hey Nikki, thanks for the positive input hunny. How you doing?
Love and hugs
Lisa
xoxo
PS I defo think we should meet up some time