Hi I am a newby to this: hav just been diagnosed with BC, and can’t get my head around it. I have a very supportive family - been wiv Dave for 22 years, have a son of 20 and a daughter of 17. She is very strong bless her, Tom has been very withdrawn and I do so worry about him, its so hard as you want to reassure him, but again worry so much yourselves. My Dave is also so worried, he has just said to me Em - don’t think I haven’t cried.
I started a new job five weeks ago, went today & was sent home due to being so upset, not a good start.
I would just like to speak to someone who is goin thru the same situation, its all so new, I don’t really know whats gonna happen??
Em xx
Hi Em, so sorry to hear that you have had to join us on this Forum. Im 41 and like you been with my hubby for over 20 yrs no children tho. What have they told you so far ?. In my experience ( diagnosed June 2006, Lumpectomy, chemo, radiotherapy, Tamoxifen etc and then diagnosed in August 2009 with new primary in other breast so having to go thru this all again!!) they did biopsy which gave preliminery results but no def. treatment plan until i had lump removed. Please feel free to private message me if you would like. It really is so shocking and scary at first, but i found that the more i found out about things the better i felt, but it is such a shock at first. Ill be thinking of you. Love F1Fan xx
Hi Em,
I was dx in Feb 07, so just over 2.5 years ago. I had my surgery at Glenfield and chemo/rads/herceptin at LRI. I finished herceptin last December and am now on the waiting list for reconstructive surgery (the reconstruction clinic is in Glenfield but I think the surgery is in LRI). All the way through I have found the nurses lovely at both hospitals (although the older consultants can lack bedside manner). The waits for chemo at LRI were pretty bad, but I have heard they have changed the system now so it’s not so bad.
I have three teenagers (oldest now nearly 20)- it’s often difficult to tell what’s going through their heads at that age. My son, now 17, has never talked to me about my cancer, so I really have no idea how he felt about it all. I always tried to play it down at home as I didn’t want to scare the kids - youngest was only turning 12 at my dx. In fact her birthday party had to be delayed for my surgery.
Best wishes for whatever treatment you find you need.
x
Hi Em
So sorry you had to join us. I was diagnosed in sept 09 and God, is it hard! Unlike you, I have just divorced my adulterous git of a husband: divorce came thru the day of my lymph node biopsy! I have told everyone I know about my cancer and have had tons of support (and chocs and flowers). It is hard, as no one is you and can be inside your body with you. Everyone here does understand what you are going through though and may have similar experiences.
Take care
Julia xxx
Hi Julia; so sorry to hear about your git of a husband!
Hope U are gettin on ok? - what stage are U at? - I have just had my chemo delayed from tomoz to next Thurs, but inbetween I have a CT scan, bone scan & then a wig consultancy, so plenty of hospital appointments! - where R U, R U Leicester also?
Luv Em xx
Hi Em
I am in the same state as you - just been diagnosed, had biopsy etc and am having a lump removed next wed in Glenfield. BC unit there have been great. My solution was to stay busy, stay positive and tell everyone in the family and at work. By doing this I have built a good support group around me and all of them have been great. I probably embarressed some of the men, but most of them have been good as well. I have found that reading other peoples posts on this site have been very helpful - it shows that you are not alone.
Keep your chin up
M
Hi Em
Had my mastectomy 3 weeks ago on ward 23A at Glenfield and cannot praise them enough. I keep on forgetting to write a thank you as I was treated with such care and kindness and would like them to know how appreciated it is. Any info you need don’t hesitate to ask. Unfortunately 3/5 of my nodes are involved so am off to LRI next Monday to see the Oncologist. Was hopeing to get away with radio and hormone treatment only but due to nodes and age (45) my surgeon (Mr Kruppa -new chap from Royal Marsden a truly lovely man and gifted surgeon)has advised chemo, axillary clearout and radio. However final decision down to Onco and ultimately me. I was thinking that if the chemo situation was bad at LRI I may transfer to KGH which is nearer for me.
Hope you are feeling ok and as difficult as this is take one day at a time. Easier said than done I know as I am still practising. x
Hi Maggie;
Yes I couldn’t agree more they are brill at Glenfield, they are also very kind at the Royal, although it is a lot more hassel goin there! - still I had better get used to it as I have three appointments next week, a bone scan, the wig consultation and then chemo on Thurs!
My lump is too big to operate on before chemo, so I am having to do the chemo route first! Although was back at the Glenfield yesterday for the CT scan.
Anyway good luck for Wed - hope all goes well for you
You are so right this site is fab, I so like to chat wiv ladies in the same boat as us - lots of luv Em xxx
Hi Elle;
I am also under Mr Kruppa at the Glenfield & yes he is very good!
I am under Doc Boiangiu at LRI - who is also very nice!
You know when you say KGH - Do you mean Kettering?
Because although the staff are very good at the Royal, the parking is awful, it is one in one out so you have to get there really early to park! - I have three seperate appointments there this week! - the bone scan on Mon, the wig consultation on Wed & then chemo on Thurs!!!
Another factor to consider about the Royal is that I should have gone today for the start of my chemo, I went yesterday for my pre - chemo chat & was told that it is delayed until next week! - as they are so busy! - although I was assured that once started you would get regular three weekly slots.
If it is Kettering that you are talking about, where do you live? - as I live in Billesdon, which is 10 miles from Leicester, towards Peterborough & when anyone I have known has had to go to accident & emergency we have always gone to Kettering, yes a little further (but not much) & you get seen so much quicker!
Yes, thanks I am feelin ok - although as you know you have good & bad days, I have not gone back to work as yet, but like my Dave says at the mo I wouldn’t be there much if I did! - Had two hosp appointments yesterday! - three next week!
Anyway I am rambling on a bit! - Please keep in touch & good luck on Monday! - Luv Em xx
Dear elle58
I had surgery at Glenfield this time last year and found all the medical staff and most of the nurses were very good.
However, unless there has been a really radical improvement to the chemo dept at the LRI I would definitely advise you to look elsewhere if you have a choice. The dept is grossly overcowded, there is no privacy and the waiting times are excessive. Having had positive experience in other hospitals I would certainly not go voluntarily to the LRI for chemo again. The radiography dept, wig dept., scan staff etc and my oncologist were fine but for me, having to have chemo was definitely made worse by the conditions (and some of the staff attitudes) at the LRI
To TopsyMo;
Yes; like I earlier said I went yesterday, I did find the ward very distressing & like i said have had my first treatment delayed by nearly a week. Although I don’t want anymore delay, I wonder whether I could start at the Royal next Thurs & then transfer to Kettering before the next session? - what do you think, do you think this could be poss?
Emma x
Kettering is served by different oncologists who work out of Northampton. They do some of the breast cancer treatments but not all so I think it depends on your regime. It is something I am going to enquire about on Monday. The unit is very small. There is also free parking there for the Centenery wing patients. I would prefer to be under the Leicester Oncologist team so don’t know how this would work.If you have private insurance you can use this for your chemo and it is appointment based so should cut the waiting down. Has anyone considered having a line put in? I don’t like needles in veins so this is something I am consideing. They say take each day at a time don’t they, don’t know about you but my mind has raced ahead to what the hell am I going to wear in the summer etc. Bad enough now and you get away with jumpers, I spent the afternoon in the pub the other day and was constantly fiddling with sponge boob in the end I felt like taking it out and throwing it.DR Boiangiu was recommended to me by someone very much in the know so I think you have a good one I a under a different onco as I am now on the clock so to speak (they have to get me seen soon targets rather than necessity). One of my friends tells me she thinks there is a support group in Harborough and she is trying to find out for me as had a dreadful day yesterday, I have been told by her that usually happens near Onco appointments.
I can’t go back to work and have been signed off for 4 months which upset me more as I only wanted a month off, stupid me. Three weeks down and bored stiff already.
Roll on a sleepless Sunday night.
Hi
My name is Dawn and I am 39yrs old and was diagnosed with breast cancer after lots of tests and biopsy’s in August. Yes it is a shock and alot of information for you to take in as well as try and keep the house ticking and looking after a 13yr old who says she is ok but isn’t. I started my first chemo on the 30/09/09 and was very sick for the first few days felt abit more human on the Sunday went out shopping and was back on the softa for a week. After that was ok. My second chemo thougt i was doing great by not being sick and going out to relatives for Sunday lunch by Monday felt like crap again and started being icky. I also have a very white tongue does anyone know what this means? I cannot brush it as it makes me (wretch)?. I am going to see my consultant on the 10/10 before my 3rd fec treatment then onto fec t have no idea how i am going to react to that at all. I have lost all my hair including eyebrows and eyelashes are fast coming out. I have no nurse is that normal? I am still new to all this and just deal with it one day at a time however would love to meet people and share stories and experiences.
Love to hear from you
Hi Dawn
Am about to embark on the chemo/radio crap so have no idea as yet about fluffy tongues and the like but give it a few weeks and we may be able to compare notes. It is scary with kids isn’t it. I fly off the handle at the drop of a hat now, used to think I was fairly laid back but times change. My kids (3) look like they are coping but can anyone shed light on the fact that they are still incapable of tidying their mess away. I am dreading feeling awful as I know I will still be the only one who sees all the mess and will try to clear up and act as normal think I may have to invest in a cleaner. Don’t you just hate it when well meaning people tell you you will be fine as you are strong since when did that have anything to do with being poisoned.
On a ighter note I went out for a meal last night and they brought me the wrong thing, not a problem for the old me but this new deranged me actually cried we are still laughing about it today and think it will go down as one of the funniest things that has ever happened to me, I don’t think I will ever feel the same again about chilli & salt king prawns. It was so embarrasing for them they probably thought they had a looney in their restaurant and kept coming over to check that everything was alright, I did leave a decent tip mind considering I had probably ruined their evening.
Have you tried contacting the BC nurse she will be able to point you in the right direction re symptoms and hair loss.
Hi Ladies, well I have started on the long road to beat this **** today!
Went to the Chemo suite to start the treatment today, Crikey I was so scared! Shaking like a leaf! - feelin so sick with nerves.
Waited more than an hour before bein called into the cramped suite, my Dave was allowed to sit with me as it was a first but wont be able to in the future.
I did shed a few tears at the beginning - such a cry baby I know, but when she asked me about the cool cap, and I told her that we have decided not to bother, and take what comes, it really bought it all home to me, when she said there is no going back! So daft I know especially as I had been to the wig place only yesterday & bought a nice wig, along with several hats/scarfs etc. So I am expectin it, but now I know that it has started that’s another matter!
I know that some of you ladies are old hands at all this, but I am sure you can remember the very anxious feelings? I had the treatment at 1pm today, and as yet have not had any side effects, I am waitin for them to happen! - I daren’t eat anything much incase I am sick, hence I feel slightly sick which could be due to hunger!
Watchin some of the brave ladies today, laughin, jokin and chattin I wonder whether I will ever be in the same situation?
I will say that I was the youngest person there today, by at least 20 years! - I think it would help if you could be in chemo with someone nearer your own age, and current stage to chat to.
Anyway the treatment lasted about an hour and was pain free, I had the nurse injecting the drugs, and Dave there so someone to chat to.
Watch this space, I will fill you in on when the side effects start happening - I am so scared, not very good at bein ill, bein a cry baby again I know!
Sorry to rattle on! - Luv Em xxx
Well dome Em; I do feel for you - and especially because you are having to have chemo at the LRI.
As I posted earlier I was there this time last year and though grateful for the treatment (which we must believe is the best) I was very critical of the physical aspects of the chemo suite & how it made a bad experience worse. It is NOT what most people have to go through as in many hospitals there are individual rooms, one can always have someone to stay with you and you are treated like an individual- not like a body on a conveyor belt. Just hope there have been some improvements made since last year and that you will reap the benefit.
At least you have a good oncologist -the small but perfectly formed Dr B.! I got on very well with him; he didn’t insult my intelligence and always had plenty of time to talk and answer questions.
You are not alone in being scared- we all are but show it in different ways. In my case it is to get mad and complain!
You do not say what chemo you are having but I had 3xFEC with no real ill effects - though the 3 Taxotere weren’t much fun. We are all different and some people sail thro - I really hope you will be one of those.
I was surprised that you only saw older people having chemo; during my 6 visits I saw a lot of younger women- including young mums with babies. My own younger daughter was diagnosed at aged 32 ( though she does not live in the Leicester area)
Good luck with your treatments- at least now that you have started you can begin to look forward to when they it finish.
Hi
I’m now 2 cycles in of 6 of the appropriately named FEC regime! although the LRI can be a bit manic, I think that the staff there that I’ve seen have done the best job they can in very cramped conditions and everyone has been nice to me. I’ve not had to wait long each time and they have recently brought in a new system I believe to cut down the waits. On the whole I think it is better to be seen in a larger centre with more expertise if you can.
Has anyone had contact with the local charity Coping with Cancer? I had a wonderful aromatherapy massage there on wed which was absolute bliss. i would really recommend it to anyone in our area and the staff there are lovely too.
Hi there
spent today at the LRI having bone scan and CT and very efficient they were too. On the minus side totally freaked out by the headscarf display in the foyer, thought the fear factor of seeing it today may be better than on Monday but alas no. Is it just me? or is this just too in your face. I know what I am there for however if they were taking my leg off would they have a false leg display, maybe I am being too sensitive.
I start my chemo next Thursday and have my pre chemo on Monday. I have opted to have a PICC line in as don’t do the digging around for veins thing and mine go into hibernation at the site of the Osborne building.
Em I know what you mean about the age thing when I was at my OP appointment on Monday I was by far the youngest person there and don’t consider myself a spring chicken (45). I was close to tears before I even managed to see a Doctor so don’t feel bad about having a weep I cry at the drop of a hat (no pun intended) and will keep Kleenex going for the next 18 weeks. What system do they use then at the chemo suite? do you get a ticket like you do for the Deli at Sainsburys, are they individual cubicles or is it one big room. All this I will know by Monday but forearmed is forewarned and might sleep better on Sunday.
General question I don’t have a drink problem but can anyone tell me if alcohol is out of the question when having chemo as Christmas is coming and the supermarkets have some good offers on and if I can’t have a drink I am not buying it for anybody else.
Have a good weekend. x
Hi Elle;
I had my bone scan at the LRI, but I had the CT at the Glenfield. Yes I quite agree both were very efficient, and both went well. I know that I have sent you a private message, but again I hope all went went last Thurs, please let us know? As far as the drink goes, then I am normally a heavy wine drinker, but the week after the chemo, it was a total no go, everything made me feel so ill, the taste buds just go completely wrong! - anyway into the second week I am now able to drink a little with soda. I did ask at the pre chemo chat whether alochol would affect chemo, and was told that No it wouldn’t - of course not too excessively, but you aren’t able to do that anyway!
Em x
Hi Topsymo;
Couldn’t agree more & no there are no improvements on last year! - the staff are very kind, but the ward is so cramped, and like you say its horrid that after the first session, you are expected to be on your own, with the person that accompanies you sat in the waiting room! I suppose I am a little different to the other’s that were in the ward with me because I have a nurse that is applying the FEC drugs through a shringe the whole time, so I wasn’t really on my own anyway!
I am so sorry about your daughter & I wish her well xx - when I said there were no younger people, I do not wish this on anyone, it would just be nice to meet someone my own sort of age during treatment for a chat & catch up
Like you say, now that I have started, I can look forward to an end, when you think I would have had three sessions before Christmas, then all being well I will be half way there!
Thanks for your support
Em xxx