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Original poster

Mutual support thread for breast cancer patients. All welcome including non-cancer patients who want to chip in!

558 replies

anorak · 14/03/2008 21:25

There seem to be quite a few of us now so I thought we might like a place where we can congregate to laugh, cry, share, compare notes and give each other a bit of support.

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huffpuff · 15/05/2008 21:08

Anorak - i'm seeing the oncologist next Tues and the chemo will start soon after that. Will not do race if feeling crap. Been feeling a bit down today. Its only been 2 weeks since i was diagnosed but it seems like forever. Just want to get on with things now IYSWIM.

How do you all manage with having chemo and looking after your children? I am worried how i'm gonna cope. DH is good but will have to work (he's a teacher) as normal.

lalaa · 15/05/2008 21:09

sorry, huffpuff. just realised you haven't had any ops yet. so tiredness can probably be attributed to the shock/stress, etc,etc, etc. i feel knackered every time i go to the hospital, even when it'sfor something unrelated.

huffpuff · 15/05/2008 21:09

lalaa - how did you find the chemo? hope you dont mind me asking

lalaa · 15/05/2008 21:14

my daughter was at childminder and nursery school quite a lot when i was having chemo. Every three weeks, in the days immeidately after a cycle when i was feeling at my worst, either my mum or my sister would come and stay to help at the weekend (because it was then, when dd was at home for the day that we needed the most support).

If you have any support around you, i'd concentrate on asking for help in the five days immediately after your chemo treatment is administered. i found week 2 was totally do-able, just felt a bit under the weather while my immune system dived, and week 3 was fine.

huffpuff · 15/05/2008 21:18

thanks lalaa - were you sick or feel sick? Did you lose your hair? Sorry for being a nosy cow - just anxious!

lalaa · 15/05/2008 21:23

i found chemo quite difficult in the first few days after a treatment. i had big nausea problems which they failed to address until the last cycle (6th in my case), when they gave me a syringe driver which basically drip fed me a drug constantly to try and ward off the nausea, and had the added benefit of making me very very sleepy.

I realise now that that was to do with a kind of reflux problem, which has never resolved itself and i'm still taking medication for it now.

if the anti-sickness drugs work for you, you might just feel knackered. tbh, i just willed the time away because i knew that once i got to day 6 i'd feel better.

someone advised me to keep in mind that each time you do a cycle, it's one less you need to do, and that helped me mentally. i counted them down on the fridge. and remember that if you do find it hard, it's hard for a reason, and that reason is that it's zapping the cancer cells!

i do remember 2 weeks after diagnosis. it was about the hardest time. it gets better.

lalaa · 15/05/2008 21:24

yep, lost my hair. consultant thought it best for me - didn't want to miss any rogue cells so didn't recommend cap thingy for me.

lalaa · 15/05/2008 21:36

huff, have put a pic on my profile of me without hair at a party we had to raise money for herceptin (wasn't licensed at the time - but the PCT came up with the goods in the end so we donated it to the breast unit instead).

lalaa · 15/05/2008 21:37

aim of pic is to show you that you can look fine without it! (well i think so anyway)

pigleto · 15/05/2008 21:38

HP I am having my second dose of chemo tomorrow. I have felt pretty useless at childcare and housework in the last three weeks it has to be said. I looked after my dd all day yesterday and I was knackered by 6 o'clock.

I think not being able to be mummy to my dcs properly is more upsetting than the hair and the surgery and everything. I am lucky in that I have a lot of help from family, but I have found that I really need it.

I have got out of the ironing though.

JRocks · 15/05/2008 22:01

Hello ladies, just called in to wish you all well

HuffPuff, I've just realised you're in Cornwall too - does this mean you're being treated at Treliske? I only ask, as my mum goes to the young women's support group there(she's classed as that at 49 and was really chuffed!) She found it really helpful, for all sorts of reasons.
She had chemo #3 on Monday and is feeling quite wiped out today, but knows she'll pick up over the weekend. Her hair started coming out after her 2nd treatment, so she decided to have me shave it all off straightaway, and in front of my DS too (he's 2.6) He's not batted an eyelid at his now velvet-headed granny.

Lots of love and good vibes to everyone x

huffpuff · 15/05/2008 22:03

thanks guys - i'm not bothered about losing my hair. You're right - its more to do with feeling like i'm letting my children down.

Lalaa - you are beautiful and thank you for taking the time to reply to me tonight

huffpuff · 15/05/2008 22:07

JRocks - yes i'm at Treliske and will go to my first group on 4th June.

huffpuff · 15/05/2008 22:09

pigleto - i see missing out on the ironing as a fringe benefit !!! X

JRocks · 15/05/2008 22:36

I hope you find it as useful as mum has.. you may even be at the next one together. Obviously won't be compromising your anonymity, but if you did want to have someone to chat to there, can arrange something. I'm doing the Race for Life too, but in Truro in July..

Take care x

TheMadHouse · 15/05/2008 23:36

Anorak - I am 98 kg and 5'2, do need to get down to 80kg.

He also said it was really important not to be a smoker as it compromised blood supply. I havnt smoked for 4 years, since I feel pregnant with DS1

Original poster
anorak · 15/05/2008 23:57

Thank you TMH, I should be ok then, good luck with the weight loss - it's a great incentive.

huffpuff it all depends what chemo drugs you are going on -
I have had two different courses. One made me very sick, the one I'm on now isn't too bad. What drugs will you have?

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Original poster
anorak · 16/05/2008 00:10

As for the children - I had my op a few days before Christmas so my DH and DD (15) were around during my recovery. My sis came from the UK in January for 3 weeks and helped me. When I was on the chemo that made me feel really ill I got to know to some extent which days I was likely to be feeling worst. My DH hung around to take DS to school before going to work a couple of times and also came home early enough to pick him up a couple of times and then finished his work at home.

Most of the time I was able to do the bare minimum. But there will be times when you suddenly feel dreadful without warning because your immune system is weak and you will catch bugs and be sensitive to foods when normally you would shrug it off. So it would be helpful if you could have someone you could call to do school run etc if you don't feel up to it.

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Original poster
anorak · 16/05/2008 00:28

Oh yes I meant to say there is a pic of me in my wig on my profile!

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TheMadHouse · 16/05/2008 09:13

Anorak - you are right it is a great incentive and it would mean that my apron thing from two previous secttions would disapear completely.

I was under the 80 Kgs before DS2 was born which will be 2 years in June, so I know it is possible. The consultant actually siad being larger breasted gave him more to work with

So healthy diets all round in TheMadHouse this summer. If I eat what I prepare for the boys I should be fine.

The consultant re-iterated what a major operation it would be 12 - 16 hours in surgery, week in hospital and 2 -3 months recovery. I just keep thinking of reducing my risk from 85% to 6% and then look at my boys and know it is all worthwile. The breast doctor has also said that he will remove some lymp nodes just to be on the safe side.

I didnt realise the Lymphedema was for life - you learn something new everyday

HuffPuff - I hope you are feeling OK. I understand the looking after the children bit. My mother and MIL are both disabled and not much help, so it is going to be all dowm to DH and friends

huffpuff · 16/05/2008 11:58

Anorak - i dont know what drugs i will be having yet - seeing the oncologist on Tuesday. Will just have to deal with the side effects as they happen i guess but just feeling a bit snxious about everthing atm!

Going out tonight with a few friends so am looking forward to that!!

lalaa · 16/05/2008 13:05

Anorak, your wig is great! Very natural looking indeedy. And love your house.

Original poster
anorak · 16/05/2008 19:57

I had a look at your pics too lalaa and I thought you looked lovely.

huffpuff do post when you know which drugs you are having.

I had my last lymphedema treatment today so I can take the bandages off tomorrow and wear a lymphedema sleeve during the day and type with two hands again - hooray!

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pigleto · 17/05/2008 10:06

anorak your wig looks great. Is it hotter than hair IYKWIM? I am taking mine with me to portugal next week where I hope to find some sunshine.

Your house looks amazing.

I am going to have to find some photos to upload .

Original poster
anorak · 17/05/2008 17:05

I don't like wearing the wig as it is hot and uncomfortable and I always worry that it will slip and cause a really embarrassing moment. But there is no getting away from the fact that it does look better than hats and scarves.

I only have four more weeks of chemo to go and I'm really looking forward to having some hair again.

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