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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.

OP posts:
seb1 · 19/03/2008 20:50

Jrocks, here is a link you might want to look at, My new hair

MrsOnTheMove · 19/03/2008 21:09

Pigleto I will be thinking of you tomorrow and sending you positive thoughts.

I remember the night before my mx as though it was a week ago. I had to check in the night before the op and after the surgeon marked me up with the black marker I persuaded him to let me leave hospital and go out with my DH for a meal. I was given two hours to be back on the ward.

My DH found the whole thing surreal - watching 3 male surgeons discussing his wifes breasts and how big or small the reconstructed ones would be!!

Take the time in hospital to rest and accept all offers of help. I had my parents around to help but still made sure DD1 went on playdates, went to pre-school etc. Remember there will be a time in the future when you will be well enough to help out those who helped you - so don't feel guilty!

TheMolesMother · 19/03/2008 21:26

JRocks - the hairdresser who sold me my wig styled it to suit for me. The whole occasion was great fun - chosing the wig and getting it styled. Hubby said I looked 10 years younger. You should definitely complain. You received very bad service.

MM

JRocks · 20/03/2008 08:12

seb1 - that site is fantastic! I'm actually thinking about looking into the course on cutting wigs...if Trev Sorbie is still doing it. The site only gave details for a course in 2005, but there's a number. Maybe I can help some other people too then...and no-one will have to experience dragon wiglady again. grrr.

pigleto · 20/03/2008 10:08

Thanks for your good wishes all.

I had the ultrasound which unfortunately found two suspicious nodes which they biopsied. The surgeon wanted to wait for the results before he operates so that he can do a clearance if that is what is needed.

Which means that instead of having my op today I will have to wait for two weeks because it is easter and everyone is going on their holidays. AAAAGGGHHHHHHH!

I have gone into denial slightly as it all feels too unreal.

Does anyone have any top tips on what to pack in my hospital bag?

JRocks · 20/03/2008 10:57

Sorry to hear your news pigleto, I know my mum found the waiting particularly hard, she just wanted it all over with as soon as possible. I hope the fortnight passes quickly for you (if that's what you want).

Hospital bag - mum was told to pack tops that open at the front as it's too sore to lift your arm(s) to put them through armholes in tops that don't. And her Ipod was a godsend apparently when she wanted to block out hospital noise, and/or her own thoughts. I'm sure someone else will be along with some more practical advice soon.

take care

Original poster
anorak · 20/03/2008 12:02

Hello all, hello pigleto, I'm sorry about your nodes - I had one positive and the surgeon took about 10 out, all the ones surrounding it and they were clear, which was a big relief. I guess this will mean you will have to have chemotherapy

At least you will be well to enjoy Easter, I had my op a week before Christmas and Christmas is all a bit of a blur. Don't be too worried about getting movement back in your arm - it only took me a few days as I was religious about exercising it in hospital - and although it was uncomfortable it didn't really hurt.

I took books into hospital, dressing gown, any toiletries you like to use, I spent lots of time reading. Baby wipes are handy too.

OP posts:
lalaa · 20/03/2008 14:57

for hospital: don't forget ear plugs and button up tops (rather than ones that you need to pull over your head). and check out local info regarding food - our hospital has terrible reputation so I took supplies. music is good to get a bit of privacy if you want it.

lalaa · 20/03/2008 15:01

i saw my genetics consultant this week and it looks as though i probably warrant testing. although, of course, in my area, there's no money for it......it does make me so cross that time and effort has to be spent fighting for funding rather than concentrating on staying/getting well. i went through all sorts of hoops to get herceptin (before it was approved for primary breast cancer) and now it looks as though might have to do that all again to get funding for genetics testing.

MaryAnnSmotheredinchocolate · 20/03/2008 20:30

what does genetics testing involve lalaa ?

pigleto · 20/03/2008 20:33

Hi. Yes anorak I will be having chemo this summer. My tests came back positive.

I am not sure how I am going to cope with the dcs. I have a two and a six year old and a dh with major spine problems who needs a certain amount of nursing. It is weird because I am not yet feeling ill but I have to plan to be. The family have all been great and they live fairly near to us so will be able to help out a lot.

Thanks for your tips on the hospital. I will be in there for five days so I have splashed out on an ipod. I will fill it up with some good tunes.

seb1 · 20/03/2008 22:37

Another tip my friend got for when you are in hospital is take a empty toiletries bag with handles, she put her drains in there, she found it was easier to get mobile as she could carry them around and when her kids came in it helped stop the kids from noticing the drains.

TheMadHouse · 21/03/2008 08:13

Pigleto - I hope the wait is managable. Regarding things for hospital I find eye patches are great, as they never seem to turn off the lights, ipod and charger , lip chap (I also seem to get really dry lips), reading material

Original poster
anorak · 21/03/2008 12:31

Oh yes, bring jeans or trousers with pockets in to wear when you go home then you can put the drains in the pockets.

Or bring safety pins so you can pin the drains to your clothing.

OP posts:
lalaa · 21/03/2008 13:40

my hospital recommended that i stay in hospital until the drains came out due to having a 2 year old at home. pigleto, i think it's worth talking to your bc nurse about how to cope with your family during chemo. i had childcare in place, and a dh who cared for both of us, and it was, i'm afraid to say, a massive struggle for all concerned, even with help at weekends from family.

genetics testing involves a blood test and months of waiting while they look for a mutated gene or two. unless we pay for it, in which case they can turn it around in 3/4 weeks. at a cost £2K. hmmph.

BlaDeBla · 21/03/2008 13:41

You sound very organised anorak! I was told that some people like shoulder bags for the drains. I took a loverley hospital bag with pictures of drains on the front (yuck!). My arm still hurts and I am really tired. It's horrible and I'm longing to have a bit more eneryy to do stuff with.

MaryAnnSmotheredinchocolate · 21/03/2008 16:43

lalaa,is that to test for futher occurences or to see whether it might mean dc susceptible ? sorry, bit ignorant

MaryAnnSmotheredinchocolate · 21/03/2008 16:43

possibility of further occurences, I meant

beep · 21/03/2008 16:57

hello all

sorry about yuor results lots of good advice here.
like anorak I made sure I did the exercises religiously as I had limited mobility in my shoulder before the op due to arthritis( i have alot more now as the chemo has helped with the artritis, and incidently I have no psoriosis for the first time in 30 years).

Yuo need to make sure you have lots of help when you come out of hospital,I found I recovered quicker than I thought I would, but I did stay at my sisters house for 2 weeks.

the chemo has been pretty dreadful

lalaa · 21/03/2008 19:00

maryann, it's both. if positive, i'm more susceptible to further bc, and to ovarian cancer, and if positive, it will mean that my dd and my sister & brother have 50% chance they have the gene too.

MaryAnnSmotheredinchocolate · 21/03/2008 19:02

thanks, just wanted to check...so this is something you are going to have to pay for ?

lalaa · 21/03/2008 19:22

mary ann, well, our very crazy NHS system means that it is possible that my sister's hospital trust will pay. i'm waiting to find out. otherwise, i have the choice of waiting for my hospital trust to sort it out (consultant has been waiting for over a year and remains pessimistic) or paying for it. if it comes down to the choice, i will raise merry hell with the hospital first.......

MaryAnnSmotheredinchocolate · 21/03/2008 20:38

Gah, it shouldn't be like this - bastards

MaryAnnSmotheredinchocolate · 21/03/2008 20:39

what about your mum btw, would she have to be checked ( and aunts etc)?

TheMadHouse · 22/03/2008 10:32

I had the genetic test - My aunt was offered it by the centre for life in newcastle as her cancer was extreamly rare. It took 5 months to get the results, initial testing always takes longer, as they do not know which spe,lling mistake they are looking for or which gene they are testing.

She came back positive then it was offered to other individuals with direct links to her ie siblings and daughters. Then when my mum tested positive I was offered the test. We have been lucky in the family as most people are testing negative.

Mine leaves me with a 60% chance of ovarian and a 85% change of breat cancer. I have boys so they will be eligable for testing at 18 - the mutation ios boys is for testicular nad prostate, but in a much lower percentage.

It is worth also pointing oput that the mutation is incredably rare only 1% of all initial tests in people who already have a cancer find it.

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