hi i’m new here and been reading up a bit. i was diagnosed in sept and on chemo prior to surgery.i’ve got 2 children aged 4 and 10 and struggling a bit to cope as my 4 year old is a problem and i am knackered all the time due to the chemo. any ideas how to cope plz??
Hi missusB
So sorry you have had to join us here.
I was diagnosed in November last year - had mastectomy and am now on chemo, followed by radiotherapy, followed by more chemo. I too have children - differnet age ranges to yours though - mine are 9 and 21.
You don’t say whether you have a partner/husband or any family close. I must admit, after surgery, I left everything to hubby for a while - I just couldn’t keep up with my youngest daughter who seemed to suddenly want mum to do everything for her (just her way of reacting I guess).
The chemo does make me tired (I’m on fec) - usually only for the first couple of days - but again, my daughter is old enough that I can explain why I can’t do things, or why I cant be bothered to get up. I have no other family where I live, though my hubby has a large family and his sisters have all been great - popping in to check if I need shopping, or just to natter.
With regard to coping - with a 4 yr old I’m not sure what advice to give. I usually say just listen to your body - when it says sit down and rest - do it. There will be good days and I find these come round much quicker if I accept the bad days and just chill out, but I realise this will be hard if you have a 4 yr old making demands of you.
Sorry I couldn’t be more help - I hope you find a solution. Please keep us posted
take care
Margaret x
Hi Margaret
Thanks for replying.
I have an ex! When I first told him(via email as he was abroad) he wanteed to know all the ins and outs, bearing in mind I had told him all I knew then. He went off on one saying I was keeping him in the dark! When I told him some of the things the children had said(such as my 10 yr old girl asking if I was going to die, and my 4 yr old boy saying to someone that when mummy dies after xmas my sister will be my mum) but I also explained that kids say things one day and are fine the next day. He flipped out and went on about clearing his diary and being in country ready for when I die so he could take the kids!!( as if)
My mum and dad are around and mum has been coming with me and staying after treatment till i can manage. But as it goes on it is taking more and more out of me.
My 4 yr old kicked off last night and it went on for 2 hours, hitting, kicking,pushing and pulling me( this is normal for him) I didn’t want to ask for help because as it is I feel like I’m not in charge anymore
I was banged up in hospital the week before xmas and only got out on xmas eve, this really knocked me for six and made everything real and very scary.
gosh, it looks like i have really gone on doesnt it, hope you don’t mind.
I’ve got hospital later to see if I need a blood transfusion and to talk about my next session!!! to be honest I’m dreading it and would rather give it a miss, but I won’t.
If they let me out I’ll let you know what happened
T
Hi missusB
I’m hope you are finding this thread helpful. It’s not at all unusual to worry in your situation, as I’m sure you realise. As well as the support you are getting from the forums you might want to phone our helpline and talk through your fears and concerns.
The staff here are all either breast care nurses or people who have personal experience of breast care issues and you can talk in confidence about both technical and emotional issues. The number to call is 0808 800 6000 the lines open Monday to Friday 9am - 5pm and Saturdays 9am - 2pm.
I hope this is of some help to you.
Kind regards
Sam
BCC Facilitator
Hi MissusB
Sorry you are having a hard time. I was dx in July with bc and then 10 days later told had spread to liver as well. I am 39 with a 4 year old and 1 year old, and can well relate to the 4 year old probs, although not quite so bad. Mine is a girl, which maybe slightly easier and is my first, whereas my 1 year old is a terror, but think the second ones are more up front and knowing if you know what I mean.
I have my husband to help me most of the time apart from when at work, but if struggling he comes home. Apart from that though I have no family close by, a really good friend helps out with my daugther as her daughter same age and go preschool together. So I know how hard it can be.
Not really got any advice with the 4 year old as I usually try to ignore when she kicks off, but when feeling down, tired or emotional it is so very hard to cope. I was hospitalised for a week in November (missed my babys 1st birthday), and think my daughter found it really hard to cope and accept, but did seem to calm her down a little. But normality came back after a few days back at home.
You don’t say what chemo you are on. I had 3 x FEC and 3 x taxotere and am now on Herceptin (2nd one next week). I found the FEC a breeze actually, and life pretty much the same as normal. Although very tired, but always tired, and put down to the children most of the time. Taxotere knocked me for six, and as said ended up in hospital. I rested when I could, not always easy. Friends took daughter out, so left with little boy which helped.
If you have friends willing to take your children for an hour or more during the day then accept. Take any help you can which enables u to rest especially first week after chemo I would say.
Sorry if I have rambled too much and probably not been much help. Let us know how you are and keep posting, as these forums are so helpful and so supportive.
Lots of Love
Dawn
xx
hi MissusB,
Just wanted to say sorry that you have had to join us, you will find alot of support here.
Sorry to read what a stressful time you are having with your son too as DM1968 has said take all offers of help.
Do let us know how you got on today.
Takecare
Karen x
Hi all
just back from the hospital, it turns out Iwas supposed to be there yesterday.!!!
I’m on neo-tango trial and on B2 which is paclitaxel+gemcitabine followed by EC.
after my first treatment of P+G mt joints all seized up and I couldn’t walk.
I’ve had all them and had 2 EC.
I have pre-chemo on monday and chemo tuesday.
they are going to up the anti sick and see possibly about dropping my dose a bit. Unfortunately they wouldn’t take my son(i tried!)
Thanks to you all
T
Hi
just been reading a few posts and noticed that many of you know grading and talk of HER+ or something. Is this known after surgery or did you find out before.
I’m due to have mascetomy after chemo .
reading posts gets me thinking that I really don’t know as much about my BC as maybe I should.
It really is good to read how others are doing.
T
Hi MissusB
You normally find out the grading/stage and receptor staus after surgery.
They can gain some information from biopsies etc but the full pathology report following following surgery is when they find out full details.
You should then be told what grade the cancer is, whether you are oestrogen or hormone receptive and your her2 status. I was told all this information a week after my surgery at first meeting with oncologist - couldn;t remember a thing she said the next day though - so had to go to my doc and ask him to write it all down lol.
Hope you are keeping well
Margaret x
Hi MissusB,
Most ladies will have tests done after mastectomy, if they have that first, and have chemo afterwards, but as you’re on neo-tango trial, they should already know quite a bit about your grade etc. Ask your onc when you are in next, also if they know your ER/PR (hormone) and HER2 status. I’m also on neo-t, on A1, so have had 4 x EC and have had 3 out of 4 paclitaxel. My tumour was 5cm and has now shrunk so much they can’t find it on ultrasound, so when mastectomy is done there won’t be much left to test, so they have to look at the original core biosy that was done - did you have that?
Sorry can’t help with your tiredness, and problems with litle ones, as I don’t have any. I’ve been able to just go to bed when I fel tired, and EC does get you like that, I also had almost constant nausea which I found realy difficult to cope with.
But keep going girl, only 2 more to go! You’ve come so far already, and I’ve been told that after chemo, everything else is much easier… There’s another thread in this section about neo-tango trial, if you want come over and say hi, we’re all keeping track of each others progress. I’ll be having my last paclitaxel next Wednesday, should have been last week but my blood count was way too low.
Take care,
Shannon
x
Thanks Margaret and Shannon
I will ask when I go on monday for my pre chemo appointment.
Only seen the onc consultant once and that was when stuck hospital week before christmas and all he said was if all ok then I could go home next day…obs taken temp38 then 41 so I didn’t go home.
From what I can remember and discect from the docs is that I got 3 tumours in right side and lymph nodes as well. Original biopsy was an ordeal as I didn’t know I would be having it. 6 samples taken fron 2 holes. The one halfway thro was just 1 sample thankfully
I must admit I phoned the number and spoke to a nurse or someone as I am stressed about next treatment and it did help.
My left arm is really knackered from all the needles and is still painful and difficult to use,any time anything was pushed thru the line I hit the ceiling with the pain. They keep saying about a central line but worried incase 4yr old gets hold, when my legs seized up he went for them and now its my arm, I don’t fancy him pulling a line out!!!
Thanks guys I now now what to ask and your support is really good, Shannon I will jump over and see whats on the other thread.
Tracey X
Tracey,
As you haven’t had your surgery yet, they can use your right arm too!!! I started with chemo in my left (as lump was on the right) but the veins became painful after 2 lots of EC, so mentioned this, and they said it was ok to use either arm if I hadn’t had my mastectomy. Worth asking on your next visit!
Also, if you are on the trial, you should, under the terms of the trial, see the onc/consultant before each chemo at your pre-chemo appt. Who do you usually see then? I couldn’t get an appointment for mine on one occassion, as he was fully booked, and when the chemo nurses found out they dragged a consultant doc off the wards to come see me while I was actualy having the chemo.
The only reason they may not be sure about your on-going treatment is that until they do the surgery, they won’t know how many lymph nodes are affected (I’m the same) but they should be able to give you some idea, I’d certainly push for some more info.
Take care
Shannon
x
Hi Shannon
thanks
I was told right at the start that they wouldn’t use my right armto keep it as strong as poss for after surgery, but I will definately ask!
When I go for pre chemo I see a ward doctor or a nurse practitioner, but it seems that they are only focused on the treatment. I tried explaining my fears and about the difficulties of coping with the 4yr old but I think I will have to see the ward councillor or contact the macmillian nurse who I saw when diagnosed…
Someone else said on another thread about there being no one her age going thro treatment where she is, and it’s the same for me.
I have made some notes of what to ask when I go on monday so we’ll see if I get any answers
Thanks again for your help and glad yours has shrunk so much, fngers crossed for you X
Tracey