chemo kicks off 20 May - any good buddies?

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1221

Hi,
well if I am this Tigger bouncy before I start steroid tablets i am in big trouble tomorrow. I need to think of tiring jobs just in case. I am soo soo happy just now and the only blot is that I don’t know yet that Julia is done and also for Lorraine tomorrow. Back to that in a sec. Having chemo and seeing the Prof on the same day was going to be a problem so I took a pillow and blanket and snored my head off in the car betwen the 2. He said he was very pleased with me and impressed that I had stuck it out right to the end. They had not thought I would as I mentioned planning to jump ship on 6 so many times if I was not well. He has put my stats at about 90% and says he will be very surprised if he sees me back as I have had so much treatment. Only words I know with no guarantees ever, but this has brought me and my family so much relief and will help me walk on from here back to work and making future plans, so much more easily. I am a worrier about health. I have to go and visit a radiotherapy nurse on Thursday who drives over to our area to break you in gently before you go to the planning appointmnet. Rads planning is booked and the Prof meets me there too apparently, except I am going on a day he is in a different area!! Not sure how that will work so I need to ring tomorrow. He did not say if he was changing the 15 rads and I forgot to ask.Derrrh. I am on Tamoxifen. I said I would like Arimidex as it has slightly higher stats and less side effects. He said you can’t you’re not post menopausal. I said how do you know if I don’t know that I am not? He said they want 2 years free of periods before they class you as post menopausal and I am only one year so not! So then I said well in that case can I please have the expensive one and not the cheapy. I said I had worked out that if I got 5 extra hot flushes a day, that would add up to over 8000 extra hot flushes for me to endure and that had he not thought that global warming might be due to them putting ladies on tamoxifen? He thought this was hilarious and agreed to me going on nolvadex-d. A little tip for those taking the regular one, my research nurse said that people are saying go to Boots for your tablets as their generic version has been found to be much better too for some of her ladies than the ones from other chemists. Worth a thought if it is bad in the future for anyone. Julia I was told that I must be on tablets 3 weeks from my chemo end for protection, but you probably have to go from the last tablet I would have thought and maybe these dates are more flexible if I had put up a fight. Sitting trembling for the surgery appointment to come through the door next. Then rads and hopefully back to work in January with a littlre tablet each day as an annoying reminder and the heat wave!!!
Angie, thanks so much for that, it is brilliant to be the one listening to the trumpets at last. I hope my tlc does not drop off so quickly boo I like some fuss at home. Also our housework share has shifted and that is really nice. A year from now I want to be planning a big trip to the US to visit my husband’s relatives who have been really supportive, shopping in New York and maybe seeing the Grand Canyon and Miami where the other relatives live. Might need to get considerably more dosh for that one to come true!! Workwise I want to be enjoying teaching still but putting less pressure on myself by sorting out my work/home balance better instead of trying to be perfect at everything and not doing it. I would also like to finished my masters and have an M.A. I would pray that I am able to eat chocolate by then and endulging happily but amazingly being 2 stone lighter - that is the trickiest one! How about you?

Lorraine I will be thinking of you and holding your hand through this tough day. I know how you will feel as it really disturbed me seeing the graves and had to keep my eyes tight shut and got very upset. I still feel that you can tell how much a person meant by your reaction so if you are close to the person or their relatives, you should expect to be hurt by losing them. Time helps a lot.I hope people are dignified and respect the day as that would be far worse for everyone.We arae starting a weightwatching thread on chit chat if you want to join in, or anyone else. I am hoping to start a static cycle (or moving if you prefer) challenge to start at the channel tunnel and reach a destination by a certain date.The more cylists or walkers the better. I have also asked my Prof to start keep fit and weight support classes in our area and he thought it was such a brilliant idea, he said he didn’t know why HE hadn’t thought of it !!! Oh yes !!!
I think most gyms want letters before they let you join and also feel for those with one or both breasts gone, going into a normal class. I wouldn’t think a protheseis leaning on a scar would be great or after rads. So hoping to have done something that will help other people too.
Right bouncing off now. Hugs to everyone on here, busting to hear you are ok Julia
Lily x x

1222

Yay - Lily’s passed the finishing line and it sounds like she’s going to do several laps of honour :wink: Just a warning - when they do the dope tests you ARE going to test positive for steroids so no more Olympics for you my girl! Guess you can do without them?
Bet you are soooo relieved but it won’t probably hit home until you wonder why you’re not going for blood tests and sitting on the chemo ward for a day. Glad you sorted your tabs out and got the one that should be better. Being on nolvadex doesn’t mean you will get all the flushes etc so here’s hoping you won’t have them or any of the other side effects. So rads are on their way, how many do you have to have? Hope there’s not too many and you are done and dusted for Christmas - what a relief that will be, and quite a celebration I would think. Back to work in January - well, it will be a shock but a good one I hope. You seem to love your job so, after the initial anxiety (which I definitely had) I bet you settle back in nicely, probably with a slightly different perspective on things, which I think we all have now. Also hope your mini-op to remove the porthcath (sp?) goes smoothly as I know this has worried you recently. Well done and some great plans to look forward to.
Julia - hope you finished the IV bit and are now nearly over the whole chemo experience. Let us know how things are going and when the last tablets are taken - with champagne I understand!
Lorraine - wishing you all the best for today and events aren’t too distressing for any of you, however I suppose that’s unlikely as funerals do bring out all sorts of emotions. Hope there are some happy memories shared and even some laughter as even at the most tragic funerals (and I’ve been to one) there is always hope and good memories to be told.
Angie - hmmmm, where would I like to be in a year’s time? Well, I do have a sightly different slant on this so I hope I don’t put a dampener on everyone’s thoughts! Firstly (and mainly) I would like to be ‘stable’. After that who knows? Plans so far are to go to a MotoGP race with OH early next year - I ‘bought’ him tickets for his birthday (well, promised as they’re not out yet) as he’s never been and loves bike racing. Can’t say it’s my thing but I said the same before I saw a Grand Prix live so I will reserve judgement! Plus we can get a mini trip to Europe out of it. Like Lily we would like to go to the States later next year, once our girls are at uni, wow, it will be half price if they’re not coming! We’d like to travel some of the west coast and then fly to the east coast and generally chill out on our own little road trip. Just have to make sure we keep earning the money to do this and I get paid loads of bonuses. Well, we can all dream! On a more basic level I intend to do as Lily says and try not to be as perfect as I strive to be, delegate more especially at home and really enjoy the small things in life like a perfect day or a glass of wine (I wish!) or a day trip to the coast for fish and chips and, I hate to say it, but be more selfish and only do the things I really want to do not the things I’m asked to do or expected to do. As Angie asked - what are everyone else’s dreams/thoughts/lifestyle changes? By they way Angie - where would you like to be in a year’s time? And no, it’s not a job interview!
Take care to all and once Julia’s through the finish line should we start a life after chemo thread? Lily could have the honour of starting it as she began this one :wink:
Nicky xx

1223

yiiiippppeeeeeeeeeeeeeeeee, congrats Lily, way to go and 90% eh that’s fab!! Hope you deal with the last one better as you know you are done!!! bit worried about the being on tablets 3 wks after chemo, Im now over 9 weeks and dont think Im getting them until Monday so worried what’s happening inside and what protection ive been withouth.

Lorraine, hope things go okay today

Love to all
x

1224

Hi,
thanks everyone, I am bubble wrapped in your shouts of joy. Mind you the old tum is creaking into action so it will be a lot of time in the loo now as payback. Last time I got lactose intolerance for 4 days and could not even have a cheery cup of tea and biscuits (lots of). Anyway it has to be done one more time.
Lisa apparently in my area they like you on hormones 3 weeks after chemo stops and mine are being timed to start then. As you know different areas have different ideas and probably all tied up to the ovaries out and the hormones you need might be different before and after your op, so don’t panic!! How are you doing?
Nicky thanks, loved the Olympic analogy and yes I am steroid positive and proud of it!! Absolutely no laps of honour just a lot of cheering sitting on the ground. Although I have started a cyber exercise support thread on chit chat to cyber walk,static cycle, real cycle, run or anything else if any of you want to join. We are warming up for 2 weeks then cyber travelling starting at the channel tunnel and wandering roung cyber Europe. There is the manic pace or slow and very steady. I managed 1km tonight and nearly killed my legs. I have to get to 3 km by Sunday night. I am still so happy but bad tummy pains coming in to stop that. Just one more time! Waiting for the surgery date now and have 15 rads unless he changes his mind. I meet a rads nurse for a nice chat tomorrow morning.Thanks for your kind wishes, I am nervous about work but also pleased that normality seems a bit nearer now. I do feel bad when wishing things that others like you and Lorraine and others I talk to have so much more real wishes. I hope that following your success with the shrinkage it will stay really good for you and no dodgy stuff. Do they keep scanning to see what is going on? I am sending you both lots of good vibes to see the c…p illness off for a very long time. Travel plans sound really great and see you on the US plane! I will probably leave that until 2010 when insurance will be better and can save up after losing so much pay this year. I think the every day dreams sound just as lovely and I for one hope I don’t ever take them for granted again as they are a very positive part of what I got from this. Enjoy the little things in life. I must copy this giant thread before we move in case I do ever write that book. It is called ‘Lily and ? ? got BC, a light hearted account of ? BC sufferers daily lives.’
Thought I would invite some of you to join in if you wanted to and give your own experiences through this.
Julia I really want to hear you are done too, where are you? Please be ok.When is the last tablet and champers?
Lorraine thinking of you all day and the best you can say is that it is done. I really hope it went as well as it possibly could for someone so young. Big hugs x Hi to everyone else.
Love
Lily x

1225

Hi: Sorry to worry you all – I’m fine and done with the stabbing. Yipeeeeeeeeeee! Have tabs to take until Tuesday last one with the champers! Didn’t get back to you all after Tuesday as home computer has a headache.

Angie: great piccies, lovely to see how you look – fabulous. Sorry you have the itches, hope they have worn off now. Good to read your nutrition stuff – I’m heading for the green tea as well, have to be careful with fruit as it gets the system moving too quickly, hate muesli but shall try some other crunchy stuff. Had Weetabix with manuka honey this morning, lovely.

Lily: I’m fine – really OK. Had drink with lovely bloke I’ve known for about 25 years last night and he said I looked better now than I had for years. How nice – he is great supporter – my best friend (we all have one) says I have a husband and a spare! What a nice thought. Re the rads dates, I told them I wasn’t having anything until after Christmas, was not being mucked about for a couple of days here and there and onc agreed. Said it wouldn’t make any difference so I get over six weeks off for good behaviour – they obviously have different rules in different areas – either that or he has realised that I am just bloody awkward!

Love your 90% - I haven’t asked recently can’t really believe after all this I am still 67%.

On the serious stuff, had long chat with my BCN who did my last chemo whilst I was trapped in the stabbing chair. Talked about the Herceptin – which I am still not keen on with my dicky ticker – and she agreed that it was really aimed at non hormone responsive but said there could be non-HR cancer there as well so that was why they put me down for it. Also talked about tamoxifen, again she agreed that it was for pre meno women and said that maybe arimidex might be better.

We went through the detail of my rads (15 over three weeks starting 5 Jan) and said she would check me at the end of the first week and the third to make sure my skin is OK. I was concerned about have the underarm done but she said with the extensive and good (!) surgery I had that would not be necessary just the boob. That cheered me up. She also said that they thought that with the way my body had reacted to the chemo that I would probably not have too many side effects from anything else. My final comment was that I would try what they suggested but if it made me ill, then we had to find something else. She was OK with this and said no problem there were loads of other things to use – we will see. Did get big hug from her at the end and she said they were so pleased that everything had worked well for me. With the tam, they wanted to start that when I started the rads, but we will see.

Nicky: I always took mega Vit C to stop me bruising which I do magnificently, will also get on the B Vits once I have taken the last pills. They don’t seem too keen to give you any info on this, don’t know why. My BCN said that anything homeopathic was OK as the levels were very low.

Loved your bit about your date. It was hilarious. Remember girlfriend who has serious back trouble, went to osteopath, lying on her front and he sort of hitched one knee on the bed to attack her back. “Bloody hell, he had his leg over and I hadn’t even had a gin & tonic!”

I suggested a post chemo thread earlier as the support on here is terrific – don’t think I would have coped without it.

Bevy: Glad to here the rads are OK.

Lorraine: hope today has gone OK with no major traumas, it is never easy.

Where will we be in a year’s time? When I was first diagnosed and in a terrible state, stress at atmospheric levels, I said to Dick “put the clock back to December and when it gets to January, shoot me”. Having virtually written off this year, am not looking too far ahead but really want some sun next year. Don’t lie and fry but want to wander about feeling really warm. Anything else, will be just what comes along. Having made plans for this year, don’t do that now – remember the saying “Plans make God laugh”.

Well that’s it, hope everyone is feeling good and looking forward to the freezing weather forecast for this weekend – as the weather man on Radio 4 said: If cold is not your thing, booked a flight out now!

Lover to all

Julia

XXXX

1226

great to hear you are doing well Lily and I agree with you very simple pleasures in life seem to have taken on a new meaning I guess we are all so glad to be doing anything that resembles normality. I don’t remember being given my % but maybe I missed it will have to ask the onc when I see him at the end of my rads but well done 90% sounds fantastic!

Angie I am now drinking green tea every day!

Julia the rads are a walk in the part after what we have been through I know I am only on my first week and the soreness hasn’t kicked in yet (hoping it wont!) but it doesn’t hurt having it done at all and is over with so quickly. The only thing that threw me was when they gave me a blood form aghhhhh! I thought that was over with but apparently they need to do a full blood count to check everything is as it should be. Hope they sort out what treatment you are going to have as it must be unsettling. I am now on the tamoxifen and so far it seems o.k. although I have only just started taking it so early days yet. Just off to the fryer.

love to everyone else

Bev x

1227

Morning Ladies.

Lisa: I haven’t got my Tamoxifen sorted yet either… we’re more laid back in Cumbria, none of this rushing from one treatment to another, they like to amble and as it gives us time to recover in between I’m not complaining :wink:

Bev: Tomorrow will be 14 days from my last rads blast and suddenly in the last 24 hours they pinkness has gone, and the sensitivity is dropping quickly, never peeled or blistered and if I’m honest I didn’t put their cream on 3 times a day at all. I put my homeopathic cream on in the morning and that was it. I think I’m over the hump now actually.

Lots of love everyone and hope you ride out the last one with easy Lily and Julia…

Julia… trumpeteers have been put on standby until Tuesday for you.

Real life is trying to take over again so I’d better go put pay to that right now :wink:

Angie

1228

hiya all

Well found out BRCA1 yesterday which is what caused my cancer, hugely reduced my risks by having ovaries out from about 80% to 2% and can have breast MRI done in Newcastle annually, however I feel that if this gene is in me multiplying then must be a higher chance of coming back thats why get the scans, so Im going to seriously think about special recon which keeps my own skin in about 6 months along with recon - very scared already. The worst thing was my parents faces as the gene has come from either of them so they will be tested but the professer said that they would feel guilty whichever one gave me it even though its not their fault. my brother has to be tested re my 4 year old niece and then when discover which side, quite possibly both, then eveyone else can be tested if they want, Im worried that my mam is at risk as if you have the gene he says you have an 80% chance of getting cancer in your lifetime, and it opens up lots of decisions for her and my family so Im feeling bit guilty too even though they have been wanting to find out for years - blurrrr!!! Then my aunt woke up this morning and didnt know where she was so has been taken into hospital, im going to see her tonight but worried its the end starting and feel for her 4 kids (shes divorced) and us all facing this Christmas, scared as very similar results to me, that its the way im gonna go.

Anyhow sorry for twining! off to get arimidex hopefully on Monday and see what joys he tells me.

Angie looked at parp trials and bit sad as he said had I know earlier about the gene could have been on the trial, lets hope itsall its cracked up to be for future people

Love to all
xxx

1229

I think you’re taking this copying me bit too far Lisa…

No seriously… damn bu**er and blast. Sorry you’ve got the gene too, it’s tough decision time for everyone. It does mean that they now know a lot more about what kind of treatments you’d be likely to respond to if you were unlucky enough to need more which is a good thing but the burden of knowing for the whole family must be hard to deal with, I know my Mum was less than happy and really made me feel bad and the subject hasn’t been mentioned since. I know she didn’t mean to hurt my feelings but how do you react to news like that… there’s no good way is there.

Take your time thinking about recon and what kind you want and when etc, you’re still recovering from 2 lots of surgery, chemo and rads, you’re not at your strongest (I doubt I need to tell you that). That’s why I decided to wait until next year for the ovaries, you have to live your life too or the bloody cancer gets the whole of you instead of a few organs and a year of your life… at east that’s how I see it. there are no promises or guarantees but I’m coming to realise that there never were and at least it’s not something you or I did, it was there in our genes all along.

as I said… damn, bu**er and blast!.

Forgive my pathetic little brain (and it has been today) but is your Aunt fighting cancer or something too? I hope they can help her at the hospital and that she has some more time, good time that is.

The parp trial is still an option for you in the future if the cancer returns, lets hope you and I don’t need it though.

Lots of love

Angie

1230

Copycats or what!!! my aunt has breast cancer 5 years ago, in one node like me only difference was she needed herceptin. I know Im not in that much of a different place from where I was yesterday but I am worrying bout what goes inside and how fast I need to decide. I have decided to give myself 6 months as skin needs to recover anyhow!!! talking about a skin sparing one or something - happy days eh!! whens the virtual hen night!!!

1231

I think I’ll be doing the virtual hen night in Jan, but I think we should all have a virtual bu**er off chemo party before too long to celebrate, if we put all of the boxes from all of the drugs together we could make a mini bonfire and I can think of better ways to get that slightly hung over feeling that FEC gave me… I’m thinking champers my dears how about you?

1232

So did the cancer return in your aunt then?

And I totally understand about the worrying (I keep glaring at the area of my body where the ovaries are :wink:

1233

Hi,
well most of all I am so sorry that Angie and Lisa you have all this horrible bag of worms hanging over you, it reaches far out to others too which is the real painful bit I am sure. I have asked again about me having genetic counselling and have been told to look at the Guys hospital website. I have a total blank of knowledge on the side the BC came from, being the second female to get it after my Grandmother (who I never met) and there are only 2 of us. He has told me if I get a yes it will cripple my daughters’ lives for any health insurance and life insurance they might ever want to take out, meaning they might not get mortgage cover if they want to buy a house. All have that ahead of them. balance that with whats insurance compared to being here! He thinks you don’t want to know and just think about it all the time, but deal with it if and when. This will need some major thinking. He says as soon as I get tested, it is on records. Anyone got some thoughts on this? Angie and Lisa would you have wanted to know this at 20, 23 and 25 and lose your dreams?My Mum took her added risk really well and is having voluntary mammos post 70 now.
Julia, well done and so glad to hear you are ok. Bring on that last tablet. My side effects are kicking in, well kicking my stomach again and hopefully won’t be too violent this time. I might have slightly misquoted as it was not a 'you have 90% stats from a database, as I am always to scared to pin him down, more a well this is where you should be after that lot. I know his stats are 90%. For some reason we have very high odds in our area above national and my particular section of the county has high spending on cancer patients and use of expensive drugs.Our consultant onc won all his appeals for patients so I hope he sticks around for along time in this area.Also hope I don’t need his bargaining powers! Your extra husband sounds like a great chap, better send him to see all of us for a nice drink too! I also asked about the herceptin query as I am not strongly hormone positive and was told I had been tested and was HER negative so it would not do me any good. I asked for arimidex but need to be free of periods for 2 years so must have tam (well nolvadex-d) first, but it is used for pre and post menopause so I am reconciled to it. Go for arimidex if you can as slightly higher odds than tam and if it did come back was later. He said he would probably put me on another AI but didn’t say which yet. The next trial results will be out before then and may change their thinking again.Snap I have 15 rads too. I saw a lovely lady today to explain all to me before I go to planning. Ours use the CT scan, rather than x rays, so all planning done in 20 mins they think and 2 tatoos, we will see! My date, not as exciting as Nicky’s for boob feltpen drawing is for Friday week. Can’t wait!!! Love your take on life and enjoy that time off as much as you can I say x. Well done.
Bevy glad you are ok so far on rads and tam too, long may that last. This lady advised me not to work through rads and to take 2 to 3 weeks off after to recover. Sounds really pathetic after how quick Lisa is back after an op as well. I said I will see how I go. I have to have blood test after rads too, they check you have recovered from the chemo and no lasting effects to check. my friend said they also track your tumour markers in our area. I have had mine tracked right through as I cheekily wrote Ca-15 on every form that they didn’t and got it done each time. It has been worrying me, as I hit the figure oue poor friend Paula had and being on the same trial, my mind statred to leap about. It has fortunately come down a lot and they say it can be a sign that the chemo is attacking something and getting rid of it, so i won’t complain if that is true. Any luck with your arm yet? Angie I have read that oncs have different views on when to start hormones and so I guess it depends on which trust you come under, our do 3 weeks after chemo with rads. I doubt it makes any difference though. Glad the skin is recovering well now. Would love to see your photos please. Lisa I am so sorry to hear you have the gene mutation too. But how brilliant the difference that op made for you, thank goodness they know about it in your lifetime. The relatives bit must be terrible and that is the bit I fear, especially my girls, well son too I guess. Mums get higher risk as soon as we are dx but you have to think she has already got to a much higher age than you. If you get it really late in life you seem to just get tablets as it grows so slowly, so try not to get to anxious about her as well. I am thinking of your Auntie too and her family who will also be concerned. As if there was not enough to worry and think about already. Talk to us about your decisions if we can be of any help. It takes more than just the gene though to get it and remember that things have changed a lot in the past few years with new drugs around, so you won’t necessarily follow the same path as your Aunt as she has HER+++, especially as you dx has now allowed everyone else to make a decision for themself now. Big hugs and take care you are not long out of theatre. x.
Nicky I watched you on sky plus again and still think you looked fab on tv. Lorraine how are you?
Hugs all round I think after reading all your posts. Off to attack the remedies to cure what is coming up and shouldn’t and what is not going down - happy memories eh!
lily x

1234

Hi: Just noticed how I signed off my last post!!! Must check my typing!!

Lisa: What a bummer. It is the effect on your family that is hardest, especially youngsters. I worked with a guy who had thyroid cancer, had to have thyroid removed, his twin brother was diagnosed with the same thing about two years later. They both have young kids – under 7 and all five have had or will have their thyroids removed – I think three are done. It is that that really gets you not knowing where it came from and trying to cope with people feeling guilty for ‘giving’ you the cancer. You are not whinging – this would be a bombshell for any of us. My parents are gone and I have no children just a sister also no kids who has lupus disease, so whatever we have ain’t going anywhere!

I think we should all take our time with moving from one treatment to another. I have certainly told my lot that I want time to recover from one before we do something else – so far they have agreed, but at the end of the day, I make the decision. Awkward cow that I am!!!

Angie: Looking forward to the trumpeteers and the virtual hen night also the Christmas party – I’m up for all of that!

Lily: Like the ‘second husband’ tag, must tell Peter. He drives a lovely navy Bentley and has just bought a 40ft yacht, also is my investment broker – I worked on the assumption that if he couldn’t make money for himself, he certainly wasn’t going to make any for me!

The herceptin points you make are exactly the same as mine also the tam. As I say, I have been from periods (thank God) for about 7 years so I really don’t want them back! Nobody has said anything to me about not working thru rads but then I only do two days per week so am hoping to be able to get through those and the following couple of weeks, My job share partner says she can cover if I need time off but hope not to.

The genetic thing with your daughters must be difficult whether it is better not to know and just take your chances. Your mum is very brave.

Tonight our neighbour is having her Beaujolais party – usually based on the new Beaujolais but since it is not good this year she is using something else – Rioja I think. She is very brave full dinner for 12 – came borrowing scallop shells last night and rang at 7.30am (!) to borrow piping bag. Sounds good to me.

Bring on the cold weather – minus 5 and everyone has to stay home – what a load of b******t, if it was really cold minus 10 to 15 with ten inches of snow I could understand it. What a load of wimps!

Hey ho – everyone have a good weekend and, Lily, hope the SE’s aren’t too bad.

LOL

Julia
XX

1235

Lily…

I’m sorry to say I’d have politely knocked that guys block of so to speak.

There’s a moritorium out on genetic results and health insurance until 2011 I think, health insurers are not allowed to ask about genetics but that’s besides the point as to put it bluntly you have no dreams if you’re too ill from cancer to live your life.

I for one would have wanted to know as soon as I was old enough to understand. Even with the gene the old thinking would have been I should consider bilateral mastectomy when I’m 35. Even that would have been too late for me as I’m 33. I’m a rare case in having 2 lots so young but it does prove the need to know sooner rather than later.

If I had daughters I’d certainly want to know so that they can decide if they want the test for themselves ie I would see it as their right to chose but it is a hell of a bombshell to have to tell someone but as I said to Tommy the other night re my Mum not wanting to know, if her sister or my niece developed it and then asked me if it could be genetic I’d hate to think how angry they would be with me not saying anything and I see not having the test so I wouldn’t have known as a similar thing.

But that’s me and I do still have to work on my mum so that we can rule her out. I really am pretty sure it’s on my Dad’s side of the family but I can understand her not wanting to know she’s terrified of having to have prophylactic mastectomy even though I did explain that it’s not a have to at all.

Sorry if I seem a bit hard headed about it but I realise that having the result could literally save me from having to deal with cancer again and as we all know being at risk from it and dealing with it are 2 very different beasts.

1236

I think I would have rather known too, we were on the radar as my aunts having been trying to find out for last 5 years. I knew I would start mamograms and ovarian scans (for what they are worth) this year and like you say its too late for me too but had I known i had the fault Gene and the stats earlier (which there was a possiblity but the person involved didnt want his wife to undergo the test when ill) I would have taken action or if didnt at least would have been on the MRI breast scan and could have picked this up a lot earlier - all my family want to know as seeing so many people suffering is hard and although I do feel guilt I also know that its hard decisions but the implications are a lot bigger!

Love to all
xx

1237

Right, well I’m trying to be a big brave girl so I didn’t even mention the fact that I had my 3 month touchy feely exam today. I decided no I’m not going to get all het up about it. I did though :wink:

But another exam done and all is well so that’s great. Also managed to have a chat about the confusion that exists over margins for both tumours and he’s going to check into that and make sure as it’s a little vague right now (it would appear to be because of the surgeons handwriting :wink:

But anyway… big sighs here :slight_smile:

1238

Hi girls

Hope you are all doing OK but sorry to hear of your genetic testing results Lisa. A big shock I’m sure but maybe something you suspected? I’ve been trying to follow the plusses and minuses mentioned above so I hope I’ve read them right! When I went to a secondary BC event (organised by BCC) I mentioned about my girls knowing and it affecting their future insurance and the law is (supposedly) that they cannot be asked that question. Also my GP said (when I was 1st dx) that if you had the test done privately it does not go on your NHS records and therefore is not recorded in the system. This would then be up to your conscience (or any relatives’`) to mention it when getting insurance. Personally I would like to know and pass on that knowledge. I have discussed this with my daughters and they would want to be tested if I prove positive for the faulty gene but I would expect them to have ‘proper’ counselling so they know what to expect and how to cope if they too were positive. Although my Mum had BC 15 yrs ago she was post-men so this is not necessarily a genetic link so I don’t know if we do have the faulty genes but I am filling out the paperwork to find out.
Angie - glad exam went OK and they will sort out any questions with margins, it does take a while to get your head around all the info you want to know about.
Bev - wow you sound raring to go! Glad rads aren’t bringing you down - way to go and enjoy the Rioja Nouveau :wink:
Juila - hope you (and Lily) get over the side effects asap and hooray no more chemo after next week for you.
Lily - what a long post, nice to read your thoughts and what’s happening in the treatment line for you. I’m sure you’ll be OK with your rads but we never know quite how we’ll react do we? A bit of a break before the next onslaught then, but at least it’s over for Christmas, something we must all be thankful for I guess. I’m hoping to do the big ‘reveal’ after New year when I think (hope) I’ll be confident enough with my new hair ‘style’ - a very loose use of the word at this point I might add! Also we are going out for a ‘Boogie’ night at work so I think I’ll invest in a pink wig or something - at least I legitimately need it unlike all the others. Managed to do a bit of Christmas shopping yesterday and OH took afternoon of work. We went to Kingston which is a mix of shopping centre and old town and very pretty especially as it got dark. They also had a small Christmas market selling gluhwein and spiced biscuits so it smelt lovely. If it snows this weekend it would look even nicer.
Hi to everyone else who I’ve not mentioned, Lorraine I hope Wednesday went as well as it could have and you are not too sad after the funeral, also that your sister is getting her treatment sorted.
Have a great, white weekend (if it snows) love to all Nicky xx

1239

hi everyone

great to hear most of you are feeling quite upbeat, and hopefully others will follow that path soon. wednesday was a difficult day, as i expected. i didnt think i would cry because i seem to have a nack of pushing things down when they are upsetting,(not to be recommended) but i really did feel upset. to see this young ladies mum, and children, and my nephew so distraught was horrid. the only nice thing was the funeral my nephew had arranged. theyd only known each other six years but you could tell they loved each other dearly. he had a booklet made with a beautiful picture of her on the front. and they played unchanged melody (i think that was it ) the one from the ghost movie. i always cry when thats played anyway. but then i noticed one of her sons (hes about 11, with teardrops down his jumper.) im still feeling shattered from the emotions, now. my sister asked me if it made me think of my life, but i can honestly say no. i never really think of a bad outcome, maybe im in denial, but im having a great time in life, so thats what i shall keep doing! as far as im concerned nobody knows what can happen to our bodies, miracles can happen, and if not im not going to spoil my time worrying. (not if i can help it anyway)

lily 2000
thanks for your kind words, dont worry about feeling great, i think we all enjoy the moment another one of our gang, makes it to the finishing line.!

hope everyone intends to have a great weekend if possible.

take care x

1240

Hi,
well there seems to be some kind of nuclear reaction going on down my tubes, which has been gathering speed and noise all day. The lactose intolerance is the most miserable part as no hot drinks and the reflux is terribly excited by all the squash and any food but seems to dislike plain water even more! I guess 4 days of losing weight are about to hit and the freezing cold temperature has timed well with the outside drop. Pinning myself to the sofa and telling myself just one more time. Yipeee!
So forgetting the self pity, will think about you guys instead. Thank you for all your thoughts on the genetics, what a can of worms. I am very interested in your reactions and it is so much easier to see from this side of a dx. I can’t remember how I would have felt before. If you don’t mind please keep me posted how the relatives react as that may help me to do this the right way for my lovely girls. I have been given a name of a nurse to just chat to and that will be my first route of action to see how likely she thinks it is. No-one that we know has got it very very young and no sign of ovarian that I know of but as I say there is very little info on that side.He says they can get screening from 40 !! There are always private mammos to get round this though. I feel like telling them to rush out have babies, breastfeed, stop drinking, take out massive health and life insurance just in case - but of course none can afford or want to right now.

Angie, well done, great news and I bet that was scarey going to that one. You should have told us. Congratulations and phewww if you are like me about these things. I would have thought the rads ruled out any worries about margins now, aren’t they there to mop up anything just in case? What will they do about hormones for you? Nicky I see you have similar concerns regarding your girls, although you have got a bit further with your decision than me. A friend’s daughter is having to go for counselling to talk about Bc before they even go near any blood or get a positive for her Mum. I need to fond out more from her too. The big reveal sounds good and hope your hair grows as fast as you need it to. Just the fringe of mine keeps needing cutting despite annoyingly being still really wispy. The rest is just sort of staying put and the girls say it is getting thicker, I can’t see it myself. The shopping sounds lovely and well done for getting him there - mine hates shopping. He gives up one day and we have to rush and get everything or I finish off at a later date. I am getting on quite well this year though as I have been trying to spread the cost a bit. Still no sign of incapacity benefit, so just half pay for the last couple of months. Good job we are not starving!
Lorraine, so sorry. I can just put myself right back to the funeral day now and know how you felt and it is always hardest seeing the young so upset and robbed so cruelly that way. I admire your way of coping by thinking the best and hope that is what you will always get too. Julia well done and glad to see you are holding up so well. Congratulations on getting that last iv in and done.
Hugs everyone I think. Have a good weekend.
Lily x