Topic: just diagnosed with BC, London

Sorry - forgot.  Here is a very helpful positive thing which is good to do.

Exercise will be very important for your friend'shealth moving forward.  I won't bore you with the full details, but from numerous sources, exercise really does have a very very beneficial effect and actually, now is as good a time as any to get on with it.  It also helps enormously in warding off depression.   Your friend may already be a complete gym bunny, (I found out that I had a sort of mis-shape in breast whilst weight lifting, and I am convinced I would not have noticed otherwise).

If your friend is not already doing the 10,000 steps thing with a pedometer to do the counting, even starting now and building up to the 10k steps would be a hugely positive thing to do.  Yes, frankoly I agree that it would be a lot  more fun to go to a wine bar and get drunk, buy hey, if you have to do both!     They have good pedometers that also count calories and miles in the Kings Road Sporting Shop (just further along from Peter Jones) but a more simple one would do.  However, do wade through the 40 languages in the instructions.  You adjust the thing to measure your individual stride. (otherwise it isn't an accurate measure).

You may think this is a flippant thing for me to post, but I promise you it isn't.  On days when I don't feel like doing anything and would gladly go back to bed, I walk to a coffee bar, or the park or anywhere, and at least at the end of each day I can look and see that I achieved a positive thing.

 Also, my bottom (I think our American colleagues call this "buns") is like a rock and my thighs have really slimmed down over 6 months.

 From Amazon, a great book is "Breast Cancer - The Complete Guide" by Peter Pressman.  A very dear fellow poster put me onto this book and it is really worth having.

 You will see Anna further up in this log and I hope to meet her either in Athens or Crete later this year, so lovely things do come out of being on here.   Over time, I do hope your friend will gain all the inspiration and kindness that I have found here.

lots of love ...

Well evidently chemo brain is still active.  I forgot that I also had a port put in for the chemo and was one day for that procedure.

What an ordeal to have your surgery cancelled and to be putting up with rude staff as well!  I wonder if you could go elsewhere?  I don't know what I would have done if my oncologists hadn't been so caring and wonderful. 

Try to soothe yourself over these aches and pains - chances are they have nothing to do with the bc.   

Hi Virginia

I am glad you too enjoyed the sun today.  I just now saw your post about exercise and that is really helpful, thank you.  My friend is slim with a beautiful figure, but does close to no regular physical exercise, so this will be something to introduce her to, and an excuse for me to also be aware to do more!

You are so right in terms of how people close to someone who has been diagnosed can feel. Because cancer is such a scary thing to hear, the worst thought is usually the first one, but I know that there are many treatments, and one never knows as each person is a unique being, who will respond differently to everything.  It is very understanding of you to recognise and manage that this is a two way street (not saying the majority of people don't!), however it is hard to manage friends' and family feelings when dealing with your physical and mental well being.  I am glad for you you have a good support network.  

If I'm not back with more questions and advice, I wish you all the best for your surgery and hope you have supportive staff as everyone deserves.

xx 

Thanks for the lovely post - loving and inspiring.

....Hello ladies.  I am grappling with technology to post some pretty pictures but haven't quite managed yet.  I will try tomorrow - they are so lovely it would be nice to share them. 

I would love to go boating - quick - email me a boathook!!   Warning:  I do not do pulling up/down of sails, nor putting of tenders in lockers etc.  I do Gin and Tonics rather than marine housework stuff.  (My brother is Capt. Bligh on his boat).

Tuesday I am seeing my osteopath to untrap a nerve in my shoulder and generally loosen me up pre-op.   Monday I am seeing the surgeon to sign all the consent forms.

 I got a letter concerning my new operation date in which it says I must ensure I wash and wear clean clothes to the hospital.  Worrying really, am I likely to encounter hordes of filthy people in rags there?  Hope I don't catch bubonic plague or seine fever.

Blimey, it's just one damn thing afer another.........!!!

lots of love girls -

dye in breast day before/sentinel biop.  Then lumpectomy on left plus breast reduction on right.  Not sure how long in for - fairly big op coz doing what amounts to breast reduction both sides really. The ultrasound was ok in the axila but of course that doesn't prove much.

 If it had not been for this site, I would not have known that depending on margins I may have to have another op.  Terrific info flow (not) from hospital.

I bought very cheap jim jams (pyjamas) from Asda supermarket (I think UK walmart) as I have no suitable night apparel for hospital and I am certainly not taking any of my silk numbers! 

Haven't found decent sport bra but again in Asda found mastectomy bra which was nicely made and cotton, only £4.  Thought a front fastening bra would be good but can't find.  Might check out  bikini tops.  Have no real sense of what this both side op will result in.  Doubtless they will evict me asap which is ok but I am worried about transport home.  Quite a lot of my friends are lawyers,could be in court etc, can't just come to hospital in middle of nowhere at drop of hat.   Would have been so simple at the the central London hospital as less than a mile from my home.  GRRRRR

 Drinks on board - in Athens, at my hotel they did a pretty decent Brandy Alexander for 3 euros 50 cents, which I thought good and it is hard to beat a warm night looking from a roof garden across to the Parthenon with cocktail in hand!!   Wow!  6000 years' civilisation at your feet. completely amazing and inspiring.

 Much of what you say above strikes great chords.

I was not doing too badly until the last week but have got very upset by attitude of the doctors now.  It isn't like I haven't paid tax for years for my medical treatment.   (and oh my lord, how much ruddy tax...).   I am not dealing with this at all well this week but have luckilly found that there is a support group centre not far from my home so I am going to check that out because I just don't want the exhaustion of being terrified to make things worse.

 Thinking about my response to BC, I haven't fell angry or why me, but I have felt scared.  I was doing ok-ish until the doctors really got to me.  It doesn't help that I also need to re-build my career.  More than anything, I've thought what a bloody nuisance, there is so much I want to do right now.  Right now (and of course this will probly change) the treatments kind of outweigh the disease.  I am really not convinced about chemo.  I absolutely detest dealing with hospitals.  (nurses  very nice though; doctors need a sharp smack).  All in all, I think we all agree this sucks.

 It does help such a lot to share info and encouragement on here and I am extremely grateful to you all for your help.

Cuddles for now and have a good week -xxxxxxx

Evening ladies

I hope you are all enjoying a summer day, as this side of the pond has also seen a summer day.  Virginia, you have your surgery coming up soon, so I hope you are feeling ok.

I am sorry I am back here, but I have spent much of today TRYING to get some clear information for my friend, alongside being at work, but I don't give an anything about work at the moment.  We are facing two problems and I'd like some advice please as she is really freaking out (understandably) and I am trying to be somewhat stable in this so that I can get information, log it and discuss it with her as and when.  

So, when she was diagnosed last Thursday we were told the tumour is grade 3, and she had her bloods taken and was told by her breast care nurse that she'd have her MRI this week.  At this time the nurse made sure she know my friend's cycle dates as apparently you can't take the MRI if you are not at a certain point in the cycle?  Is this right?  So, today she said that due to the dates of her period, she could not have the MRI this week, but had to wait until 3rd July, and her surgery date of the 7th July is now not know as the MRI results take a week to come back, and then they'll schedule it.  This brings it beyond a month from diagnosis.  Also, when she got her bloods someone told her she had to collect urine, then the nurse said 'oh, no you don't'.  We don't now WHAT information is correct, and how much of this is based on trying to fit in with resources available to the UK society (she is having NHS not private care), and how much of it actually clinically won't make a difference. She, along with me and her others close to her who know of her diagnosis, are trying our damned well hardest to get a clinical answer.  Everyone keeps saying that waiting is the hardest, and it is, but it would be much easier if you believed why you were waiting!  

So, just wondering, esp you Virginia as you are in the UK, if they did an MRI, and said the same thing about being in the right part of your cycle.  I am just afraid for my friend as this cancer is sitting in her body, with them telling her and me that waiting is hard, but that it really doesn't make a difference.  I can't marry up these two ideas, somehow :(  

If anyone has any knowledge as to whether or not this stinks of some resource managed process rather than a knowledgeable clinically sound led process, I'd really appreciate any info.  

Calm dreams and peaceful sleep to you all.  

Thanks

Katie 

Hello, Virginia,

I echo the others' comments about your insensitive oncologist. It sounds like you are getting a lot of support here and have connected with some kindred spirits already.

I'm just going to tell my story because it's so positive and surprising.

I was diagnosed just a few days after I took a "voluntary layoff" from my full-time job. (Due to the voluntary nature, it included a pretty good severance package, including benefits.)

On the same day I was diagnosed with BC, I was offered a job that I'd been interviewing for for several months and that I was really excited about. I was pretty sure the job was going to fall through, because obviously I needed to take care of my BC treatment first and foremost, but I took a chance and told the hiring manager about my situation. To my AMAZEMENT, she was willing to send me an official offer letter and HOLD the start date for me until I was either finished or at a point in my treatment where I would be able to start working. And that's exactly what happened.

I was very lucky that my surgery and Mammosite radiation went smoothly and I ended up not needing chemo. However, I started my new job before the chemo decision was made, and my new manager was very understanding about how chemo (should I have needed it) would affect my ability to work on certain days.

So, I'm sure mine is not a typical situation, but I just thought I'd share it as a bright spot that some people can be very compassionate and understanding.

I hope all goes well for you with your treatment and your career. Please keep us posted.

Tricia

Hello everyone - some really loving posts this morning so love to you all.  Due to the urgent nature of Katie's post - I'll swing right in.

It gives me no pleasure at all to say that from the off, I too have had a lot of conflicting info from nurses/docs.  Some of this is big organisation bullshit (a point explained to me by a friend who came to an appt with me; she is a former nursing lecturer/top grade heart nurse). "but it would be much easier if you believed why you were waiting! "  Exactly Katie! Do trust your own instincts in things with regard to dealing with the NHS.  All of my own have been 100% to date and you do, I am sorry to say, have to fight to achieve some level of accuracy. This does not mean that they are not competent surgeons etc.  It also doesn't mean that the NHS doesn't get very good patient outcomes.  horrible English but you know what I mean.

I would do the following - phone and insist this point is discussed with a doctor, not a nurse.  Also, you can phone the Patients' service (PALS) at your hospital to ask for help - you are very confused etc etc.  They can get a verbal answer to your queries. 

If as things unfold, you are really not happy with things, you can ask for a written reply to a complaint.  ( I have just done this myself due to a lot of really ridiculous crap that I have encountered (realy wish I hadn't had to but attitudes have perked up a great deal now).  So the purpose of any of this is to stick a bloody great rocket up their bottoms.

I can't comment on the MRI because it was not appropriate for me and not relevant in my case.

However, I think you are right to keep pushing because there is the chance that an op gets cancelled (just happened to me), so sooner is better emotionally.  As to whether one week here or there makes much difference to outcome, maybe not.  In the States it seems things can go very very quickly. 

Also, psychologically I think it is very important indeed to retain as much level of control over the situation as can be achieved.  Which frankly in a lot of ways isn't much.

Do try phoning MacMillan nurses (UK) - they are on your side, they don't just back up the great panjandrum at the hospital.

If it is possible for you to provide your friend's details, as queried above by Anna, that would help us a bit.  We don't want to diagnose - it just helps to point you in the right direction for info on this site. 

I am really sorry for the predicament that your freind and you are in .  The entire waiting thing and the rest of it is utterly hellish, and until you join this "club", you cannot imagine just how awful it all feels.  It does ease a bit over a few weeks - I am finding I am just beginning to cal down a bit. diagnosed May 9th.

I am so glad you are there to help your friend.  Each confusion feels like one is being drop kicked in the stomach and it is utterly  exhausting.   My shoulders just completely clamped over the last month, causing pain too so I had a great session with my osteopath yesterday and feel much better today.  Lots of shoulder massage will help your friend.

I have to nip out, but do post again if you need to.

Much love to you all friends -

Perhaps I'll change my name to squeeky!!  goodjoke Anna!! ti kaneis?

lymph-node wise, what we know about me at the mo is based on ultrasound under the armpit (axila) which is clear.  But we won't have any definite info until the sentinel node biopsy (SNB) and main surgery.  I must say that as far as I know, from this site, you can have the MRI thing done.

To date I have found that innacurate use of English (not because the person speaking it is foreign) is a real pest because it leaves one with wrong info/confusion etc, and oddly it seems quite commonplace at hospitals.  Maybe I am overly obsessed with accuracy ofdescription because that is the major aspect of my profession.  Weird.

I would like to reassure you on one thing.  Whatever my ciritcisms (and others) of the NHS people, this is not about their surgical skills.  I am at the Royal Marsden, Fulham.  It has a huge reputation for good surgical skills and is a leader in technique.

For me, it is the way one is  dealt with and trying to get to the bottom of things so one actually does know what is going on.    There are slightly different methods for surgery in the USA, and I am quite convinced both countries have good cancer care, but one does need to take control.

For my surgery, I am having a lumpectomy in the left breast and immediate reconstruction and breast reduction surgery on both breasts. (This is not a mastectomy). This is becoming a quite commonplace technique in the UK.  It is major surgery but good for me I think.  I just mention this because it gives a bit of info about the British things on offer.

Anyway - good luck, have a large glass of wine or chocolate or whatever is your sin.

Do I remember afilm  "The mouse that roared"?  Was it Peter Ustinov?

Come on fellow mice - lets roar!!!!!                   big hugs all -

Royal Free in Hampstead do some very good research work.  The Marsden is obviously an excellent hospital in many ways.  They have certain issues there presently because of the fire there about 18 months ago.  My surgery has been moved down to Surrey (the team follows you there to do the actual surgery).   If that would not suit your friend, you do need to bear this in mind.   Anyway, good luck with everything.

My washing machine has just leaked and the cow dosnstairs is having a fit.

Oh greatttt.......

London-Virginia, Just saw your post.....Welcome to the club nobody wants to join!....WOW you have been through some stuff!....Hope that nutter cow downstairs learns she can't mess with you!......I didn't see when your surgery is or what type you are having but I wish you well on that matter......i have been coming ot this site for over 2 1/2 years and the ladies here are jsut absolutely wonderful!......They are all beautiful inside and out and are so supportive.....They became my therapists and my life coaches.....I have learned so much from these ladies and I hope I can teach some newbies a thing or two also.......Hope you have a wonderful day, Virginia.......

Anna and blackjack, good luck to you both...Hope you also are having a great day......Greece is on my bucket list you know......Along with Ireland and Holland and London, England.......May never make it there but it is on my list........

I am sending lots of prayers for you all that you receive all you need today and everyday......

Hi To Everyone

Chemo brain is kicking in so excuse mistakes.Thanks all for your good wishes . Had my 6th infusion yesterday -now it is Taxotere and that must be the one from hell-then that Neulasta injection on top just to finish me off completely ( I expect to the side effects to kick in tomorrow ). Went with a list of side effects  the worst being my painful fingers and toes and my nails that have gone red must be bleeding into the nail bed-this is the neuropathy apparantly so I get a load more pills and they are the same as those given for epilepsy!!! I just feel I cant swallow another pill or glass of water-water tastes salty to me now so I have to put lemon in it .

Anyone coming over to Crete -you are all welcome -I will be here till the end of October-we are 2mins from the beach.....

Hope you all have a good day 

Anna

Hello London Virgina

I have been following your thread and wish you luck for your surgery on the 24th.I am also here in the UK,well sort of ,in the Isle of Man,which is technically not part of the UK.I did post on the recurrence board but I now realise that was the wrong place as I have a second primary.My first diagnosis was in 2004 and I went for my 5yearly mammo and hey presto this dreadful thing has now appeared in my other breast.I had a small tumour ER+PR+ HER2 neg followed by radiotherapy first time round,however this time the tumour is still small, slightly ER+PR- and HER2+++.I really thought after 5 years I would be OK but now I feel so down and have to deal with a more aggressive tumour.If only I had bilateral mastectomies in the first place I would not be in this position today.I have decided to have bilteral mastectomies next week as I cannot face having more surgeries in the future.I have also chosen not to have  any reconstruction.I only have small breasts so other people will hardly notice the  difference!! The only thing I fear now is the thought of chemo and Herceptin,this would mean treatment for another 18months and right now I just cannot face that.

 I notice you are having your surgery at the Royal Marsden,or did I read that they have transferred you to another hospital?What is the reason for this?

 I am lucky that I have had first class treatment and here all the NICE guide lines are followed.I also went to the Linda Macartney Unit and saw the top Professor there to get a second opinion.However I think all areas are now following the NICE guidelines so treatment becomes more standardised,with various options given to the patients.There is only one hospital here which was built very recently and the standard of care is excellent with the incidence of MRSA and C.Diff the best in Europe.

I worked in the UK in the NHS all my life and have recently visited relatives in hospitals I once worked in only to find how low the standards of cleanliness have fallen.I just feel lucky to be where I am.

I am still finding it extremely difficult to come to terms with all that is going on,this time is much worse psychologically than the first time round.

Anyway loads of luck to you for your forth coming surgery.