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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:
ThingOne · 18/05/2008 14:35

Hi guys. Sorry not to have been around for a while but I've spent most of the last three weeks in hospital with various infections. It turned out that my Hickman line was popular amongst the bugs so it had to be removed (ouch). Good news is that I'll be having my next surgery before they put the line back in again (mega ouch) and have the rest of my chemo.

How are you all?

Original poster
anorak · 18/05/2008 14:48

Hello ThingOne. Sorry you've been so ill. What is a Hickman line? Did you get the other problems cleared up? How are you feeling now?

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Vev · 18/05/2008 19:55

I had to have my Hickman line out as well due to infection! Was I glad! I'd finished all major chemo though - hope I never have to have another. I found it worse being put in than being taken out. They insert a Hickman through your neck into your vein and a wire comes out just above your breast so they can give you chemo, meds, bloods etc through it rather than IVs.

Original poster
anorak · 19/05/2008 13:05

I'm so happy! I noticed yesterday that my hair has started growing again I have a very thin, fine, soft fuzz developing. I still have four more weeks of chemo to go and didn't expect it to start growing again until that was out of my system. But I guess it's starting to happen now that the first chemo drugs I had are being eliminated. In that case it has taken 8 weeks!

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BlaDeBla · 19/05/2008 13:13

Hooray anorak! That is good news about your hair. I feel on this thread that my problems are somehow little to do with bc, but all have been caused by the bloody thing.

My hand is less swollen than it was, but I still have to wait for an appointment before we can travel anywhere. Instead of travelling, we are now looking for somewhere of our own to rent.

Must go... lunchtime!

Original poster
anorak · 19/05/2008 13:23

I totally agree with you BlaDeBla. I am finding the lymphedema far more debilitating than the BC. Which I guess is easy to say while the BC is under control, isn't it? Lymphedema is the pits - I can barely think of a single thing that hasn't become more difficult because of it. I feel I'm having to rethink my entire life in order to adjust to it.

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pigleto · 19/05/2008 14:27

Congratulations on your hair anorak. That must make you feel more normal.

They are threatening me with a hickman line as my veins are so rubbish. I really hope that I don't have to have one as I have heard how prone to infection they are.

I got a letter from the NHS trust today with an apology for misdiagnosing me when I went in this time last year with my breast lump. Apparantly the doctor Mr Reddy (name and shame) did not follow hospital procedure at all and I should have had a mammogram or mri as well as a biopsy, and he should have made me come back in after three months for a checkup. Instead he sent me home reassured that my breast was normal when I had at least a grade 2 cancer which I didn't then get treated for a further 8 months. I have to somehow deal with the knowledge that if this moron had done his job properly the cancer may not have spread to my nodes, my tumour would have been smaller and my chances of survival would have been a whole lot better. Bum.

Original poster
anorak · 19/05/2008 17:52

Wow pigleto that sucks big time. How are you supposed to just accept it when the repercussions are so dire? Could you sue?

I felt how I imagine you do when I learnt that my cancer had been developing for at least 8 years and that a mammogram would have picked it up. Which would have been given routinely here in Bermuda. But not in the UK to my age group. There is so much more that could be done than is done

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BlaDeBla · 19/05/2008 18:51

What a horrible thing to happen to you pigleto. I am sorry. A doctor found the lump in my boob 2 years before I had the mastectomy. I had lots of tests and all were inconclusive so I sort of forgot about it till it was obvious even to me.

I hope you are being given the best possible treatment now. It's such a bugger, this disease.

ThingOne · 19/05/2008 21:00

Not good pigleto. My GP missed me for seven months but that is nowhere near as bad as a hospital missing it. You must be seriously pissed off.

Anorak - great news about your hair! I saw several people in hospital with hair growing back and it seemed to be goring quite quickly.

I had a Hickman line for my chemo as one of my drugs (oxaliplatin) is too toxic for a venflon/cannula. It's a permanent line inserted in your chest. It means no stabbing for chemo and blood tests. I will need another one when I have the rest of my treatment. OUch!

ThingOne · 19/05/2008 21:00

Not good pigleto. My GP missed me for seven months but that is nowhere near as bad as a hospital missing it. You must be seriously pissed off.

Anorak - great news about your hair! I saw several people in hospital with hair growing back and it seemed to be goring quite quickly.

I had a Hickman line for my chemo as one of my drugs (oxaliplatin) is too toxic for a venflon/cannula. It's a permanent line inserted in your chest. It means no stabbing for chemo and blood tests. I will need another one when I have the rest of my treatment. OUch!

JRocks · 20/05/2008 09:11

Just popping in to say hello.. Can't believe your news pigleto, how terrible.

Thikning of you HuffPuff today at your appointment, hope you don't feel too bombarded with information.

Mum had a good weekend - felt much better by saturday after chemo 3 on monday. This weekend she was interviewed by the chap (Ty?) from that US programme Extreme Makeover, for a programme they are making in our village. Really gave her a boost as they did a few thoughtful things for her.

Hope everyone's treatments are going as well as possible!

huffpuff · 20/05/2008 16:08

hi all. Hope you are all having a good day. I saw the oncologist today. I will have my first cycle of chemo on 2nd June (they said it will take 5 hours - is that just because its my first one? Will the others take less time?).

The nurse said my hair WILL fall out due to the type of drugs i have to have (TAC???).

I will have 3 cycles of chemo and then they will check to see if the tumor has shrunk. If not, i will have a mastectomy straight away. If it has, then i will have 3 more cycles after which they will decide whether to give me a lumpectomy or mastectomy. The Dr said i have just a 1 in 5 chance of only having the lumpectomy and that i should prepare myself for a mastectomy.

Am feeling a bit low today - going to work tomorrow and then on Thursday i am having a lymph node operation.

Sorry its such a long post - just trying to get my thoughts down more than anything!

Love and support to you all XX

BlaDeBla · 20/05/2008 19:49

It's a trial, all this, isn't it? I don't mind having had a mastectomy and now I don't think about it all that much. I'm beginning to come round to the idea that the reconstruction is actually part of me - it still feels a bit alien - and I'm not so sure I like it being lumpy because my boobs are too small!

Today my arm is heavy and a bit more swollen. It's more an irritation than a major problem, and I can still type! How are you getting on with your new sleeve, anorak?

Original poster
anorak · 20/05/2008 20:06

huffpuff my chemo treatments have been about 2 hours in length and the first one was no different. Perhaps the length of time is to do with what drug you are going to have. My advice would be to prepare yourself in case it makes you feel very ill - have friends/family on standby in case you need people for school run etc. And go and get a hat or scarf or wig so you are all ready for the hair loss.

I don't have my sleeve yet Bla, I'm waiting for it to be shipped. I'm wearing a borrowed one that is too big. And I will be having a fingerless gauntlet as well, which I really do need. The sleeve is keeping the swelling down in my arm but my hand is very swollen and uncomfortable.

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lalaa · 21/05/2008 12:36

huff, the first one took ages for me because they had to get my consent, which involves the nurse talking through everything that is going to happen and all the possible side-effects, plus what to do if certain circumstances occur, like having a big temperature. That takes at least an hour. Plus they might be allowing a bit of time for waiting in case they're not ready for you at your appointment time (that happens quite a lot). My chemo treatments were usually 2/2.5 hours for the actual treatment itself. (I had FEC though, so might be different for your combination of drugs).

JRocks · 21/05/2008 18:09

HuffPuff, I went to mum's first chemo with her, and it was pretty much as lalaa has outlined, as she has FEC too. It might depend on how you have your drugs administered too, whether the nurse pushes them through or you have a drip. Each of the three has lasted a different time for mum, so some of that 5 hours is likely to be waiting.

lalaa · 23/05/2008 19:13

OOoooooo. I've just had some potentially good news - looks like my genetic testing might be funded after all! I happen to live on the border of several PCTs and my hospital is in one, my GP in the other. Looks like my GP will be able to refer me to a hospital within his PCT that do the testing as a matter of course. Just waiting for confirmation. Hoorah. Will mean a trip of about 1 hour 45 mins each way, but hey, a very small price to pay.....

Original poster
anorak · 23/05/2008 19:26

That's great lalaa. Perhaps you can combine it with a sopping trip or visit a friend so it won't seem such a nuisance to go all that way.

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MargaretMountford · 23/05/2008 20:09

hooray lalaa

TheMadHouse · 23/05/2008 20:15

Wow that is great news regarding the testing. I hope that you are negative

Tickle · 23/05/2008 22:14

Hi ladies - just popping in to catch up with some good and some not so good news. Nice news about the testing lalaa - but for you pigleto on the missed diagnosis.

Hope everyone is doing ok. My mum is staying at the mo, and we have been chatting lots, naturally Anyway, turns out back in the 70s when she first had a benign lump investigated, the breast consultant was called Mr Grabham OK, so I have the sense of humour of an 8 year old

Lots of love and sticky chocolate pudding to you all

JRocks · 24/05/2008 15:53

great news lalaa

beingpositive · 25/05/2008 18:38

Lalaa - Sooo glad to hear you are doing so well. I remember reading your threads when you were first diagnosed. ( i was on ongoing treatment then too) Its great to see you are doing so well.

ThingOne · 25/05/2008 20:05

Good news Lalaa.