Bra Lady and Devil Cat

My lovely sister is here and I took the opportunity of going to see the Bra Lady while my sister could come with me.  It was great to have some support frankly.  This lady is reccomended in the Oncology 94 list of useful contacts and as she is in the next town, it seemed convenient too.

So we go up the stairs into her house where she operates 'en salon'.  She was in the middle of another apointment so we sat in the salon/kitchen and got entertained by her Siamese (?) cat who was really weird and bizzare.  This photo taken by my sis sums up the Devil Cat as we renamed him, although I'm sure he loves his owner...

Finally through to see the Bra Lady herself who is surrounded by boxes of bras, false breasts, rails of swimsuits and lacy bras with mirrors all over the place.  I have to say this is a hell of an occupation and must be quite a talking point at dinner parties.  Her card says 'La Specialiste Protheses Mammaires' Lingere féminine, adaptée, maillots de bain et accessoires'.  Her motto (or rallying call) is:

"Femme avant la maladie Femme toujours aprés"

Which is a fine sentiment I feel.  So, top off, after warning her that under absolutely no conditions would I look at my body topless in any of her mirrors, we found a mirror-less spot and she got to work.

I told her what I'd had done and that I was going to have an operation in a year to make it all look better but I just wanted an interim solution and a bra that fitted me and didn't hurt my scars.  She said, 'No, you have to live in the moment, don't live your life hiding away for a year, covering yourself up waiting for the day when the surgeon may be able to make it look better (or not), you need to live now and find your joy and happiness and confidence today not in a year's time.  You have to accept your body, your mind has to accept your body and only from this point can you go forward and go back into the world with confidence.'  Oh.  I hadn't really been seeing it like that so far, just a case of 'getting through' this next year and then starting my life again really.

She then had some fairly harsh words 'for my own good dontcha know' about losing weight - something which I absolutely MUST do so that I can feel better and happier and stop hiding behind my weight and some dietary advice (which seemed to consist of eating vegetables until I was full).  She pointed out, quite rightly, that the problems I had with my body didn't just come with the illness, but had been there for a long time beforehand - something which I had began to touch upon with the psychologist last week.

So she straps me into a lacy bra and showed me the (very large) difference between the size of my breasts - it's considerable - I was surprised not have noticed it hugely as I'd been wearing sports' bras since October.  She then shoved - very deftly - a  prosthesis - a flesh coloured, wobbly, soft 'chicken fillet' in the bra and the size of the breasts were suddenly even.

Then she got on her stepladder and looked for another bra - black, non lacy - and put me in it, with the squashy thing and told me to put my top and show my sister.  I did and she was suitably impressed.  It's true, the shape is better, fuller, the 'breasts' are more even and push out my clothes better so it elongates my stomach so I look less fat on my muffin top and walk taller with less rounded shoulders.

Bra Lady thought I was smiling with joy.  I wasn't, I was smiling so I didn't cry with shame and frustration and shock and horror that I had to wear one of those prosthesis.  When I chose the surgery route I chose, I never expected that I'd have to do that, I expected the breasts to be equal.  I didn't expect the ill breast to reduce in size after the radiotherapy.  I didn't think that I'd have to wait so long for an 'even-ing up' operation.  I did not expect to have to put a fucking jelly in my bra for the foreseeable future.

And it was an expensive jelly - a whopping 215€  (although it does have it's own flesh coloured carrying case - why???  plus the black bra, plus a flesh coloured bra which I ordered and the bill was, well, over one third of my monthly unemployment benefit.  This is what it looks like.  Note the little nipple too (I don't have any nipple lift since the nipple graft, it's just flat with no sensation).

Apparently the Social Security can reimburse part of the cost of the prothesis and I reasoned that what I wanted was a bra or two for the next year.  So that's what I've got.  I still don't know if I've been 'had' by someone who cashes in on womens' insecurities but I don't think so.  I'll have two wearable bras and a look that looks, if not feels, normal.

To be honest, once I can cope with the horror and the shame of it all, I might be able to see the new smoother silhouette which does give me shape and does even me out and means that I can wear t shirts and look ok.  I need a swimsuit too so I'll go back when I do as I'm told and lose some weight.

If you want to know, the prothesis is very soft and warms up with the body so it's like flesh in a way.  I guess they couldn't get any more 'natural'.  It sits in a pocket you can't feel in the bra and not against your skin so you don't feel it on your body.

So, that was my day.  It was a strange day.

Slight worry about right breast

As I've already said, there's a slight worry about my right breast so I have a scan of that breast next week to check that the lumpiness is really scar tissue.  It will be very difficult walking into the same place where I first discovered there was something in my breast what seems like years ago but was in fact only in August last year.

and now?

Had a little break from blogging, and from everything, I've been really tired and in fact working quite hard marking what feels like hundreds of papers but now I feel ready to blog again and move on.

So, what now?

In a word - Tamoxifen - an anti-hormone man-made drug which must be taken for a period of 5 years, daily.  This drug, and other related drugs which inhibit the hormone oestregen which, as my tumor was tested and found to be hormone-receptive (the oestrogen receptor test), could be one of the culprits in making an favourable environment for the tumor to develop and grow.  So, as far as I can see, Tamoxifen sort of takes away the 'food' to help further cancers develop in my breasts.  My tumor was both oestrogen and progesterone receptive and Tamoxifen is reccomended for both.  The pill must be taken every day at around the same time (you choose the time) and if you miss one, you don't take a double dose as Tamoxifen is not easily eliminated from the system so there will be still some sticking around even if you miss a pill.

This kind of treatment is called hormone-therapy and is an adjuvant treatment.  It is not really a form of chemotherapy.  In breast tissue Tamoxifen acts as an anti-hormone.  Tamoxifen has been used for 30 years now.

Tamoxifen is generally considered one of the very best anti-cancer medicines because

a) it is effective in reducing the risk of recurence and death in women who have had breast cancer.  It is also effective in reducing the risk of getting a second breast cancer.

b) there are tests which identify women like myself who are most likely to benefit from taking it.

c) for most women the side-effects of taking it are very mild, although some women may have severe effects and some women even die as a result of taking it (it has to be said).

The benefits are - reduced risk of a a metastatic disease, reduced risk of developing a local recurrence, reduced risk of a second cancer in the other breast and reduced risk of osteoporosis bone fractures.

The side effects of taking this drug can be
- increase in hot flushes
- weight gain (this may be due to the menapause, or not)
- depression (this is not entirely proven apparently)
- increase in vaginal dryness
- increased risk of endometrial cancer and endometrial changes (4 x the usual risk)
- increased risk of blood clots in legs, lungs or brain (1%)
- increased risk of cataracts (about 2% increase)

I spoke to the female oncologist (who in fact I prefer, I feel I get a much straighter answer from her) during my end of radiotherapy appointment when she prescribed the drug.  I had done a hormone blood test beforehand and for her, I was nowhere near the menapause so Tamoxifen was the drug of choice because it's mainly for pre-menapausal women.  Her opinion was the the endometrial cancer was rare but needed keeping an eye on, to avoid blood clots I had to walk a lot and cataracts are rare.  The other stuff, well yes.

A few days later I had a meeting with Dr Pink who did a scan of my uterus to use as a 'control' example so that any changes could be noted.  He noted that the lining was thin (which is a 'good thing' apparently).  He also did a smear test cos when you've got your knickers off and your legs apart in front of a guy with a speculum in his hand, why not?

So, I pervaricated for a few days and looked at the tablets and googled 'I don't want to take Tamoxifen' and found all sorts of horror stories.  But then I took it and have been taking it for over a week now.

I expect the effects will come over time although I have already had two nights when I got very hot (not drenched sheets or anything, but covered in perspiration) which meant I kicked off the covers then got really cold and put them back again and it comes around like this again and again, so those two nights were difficult as I didn't sleep well.  I also have a constantly nasty after taste in my mouth since I started the drug, which is unpleasant.

The blood test also showed that I was low in Vitamin D so I have to take 3 doses over 9 months together with a twice daily calcium tablet (I only take one as they make my tummy bad) as calcium can help you absorb vitamin D.  I still prefer that trip to Australia though.....

Radiotherapy # 33 last one! And now?

Twas a busy day today.  Blood test to start the day to see the state of my hormones before tamoxifen is prescribed.  I told her to use a baby needle but no, she knows best 'that's no use, I'll just try the big one'.  So she roots around, digs in further and futher (ouch) and then (here's the mirace for today) apologises and says she does need to use the baby needle after all.  Quick in, blood out quick as anything, why oh why don't they listen to me?  I'll be more insistent next time.

As I had eaten nothing, went to Vincennes and had the luxury of a coffee créme and a croissant in a nice bar whilst reading my book.  Then made a few small purchases in the sales.  Lovely and relaxing.

Kids for lunch with their friends.  Not relaxing but nice.

Listening brunette back today.  Spent most of the appointment crying.  I explained that recently every time there's been a nice moment including when I sing the children to sleep every night (one of my favourite moments), I enjoy the moment very briefly and then a voice from the back of my head says  'what would happen if you weren't there, what if you'd died, you wouldn't see that, there would be nobody to sing them to sleep' and the moment is full of fright and sadness.  It wasn't like that before,  I want my special moments of joy back, I want them to be filled with joy and not fear.

The listening brunette said wisely that my children would grow up in any case if I wasn't there so it's something to do with me being I'm frightened of missing those moments (and causing my kids pain by dying of course) but yes, life would go on, just without me.  It's the human condition I suppose.

Then onto the radiotherapy.  I was walking in down the corridor and the radiotherapist reminded me (as if she needed to tell me) that it was my last time.  As usual they were kindness itself and the session went quickly.   I nearly jumped off the bed when it was finished.  I wanted to cry with joy during the treatment.  I thanked all the team there for their kindness and professionalism, wondering how they managed to stay so kind and understanding so consitently.  I'd written them a card so the whole team could read it as the new shift came in tomorrow morning and I gave them a big box of biscuits to say thank you.  Seriously, I have never in my life come across such a fantastic team, although my experience of hospitals is limited, I think they are exceptional.

I saw the doctor for my end of treatment appointment.  She examined me, looked a my blood tests, gave me a ton of prescriptions for further follow up examinations, examined the lumpy right breast and concured that it was scar tissue not cancer but asked me if I wanted an echo of the breast to put my mind at rest, so I said yes.  As she considers that I am not at all menopausal, I have to start Tamoxifen this week and I'd printed an article of the side effects, she took me through them and really put my mind at rest.  I was really grateful.  I have to keep on applying the cream as the effects of the sessions may last for another few weeks.

It seems I am severely lacking Vitamin D so I have a prescription for that, and calcium.  Apparently Vit D is the vitamin you get from sunshine.  I asked if she could do a prescription for a trip to Australia, she said she'd come with me if she could!  I like this doctor.  Her willingness to explain and take me seriously but she is still funny and kind and this puts her in front of my usual oncologist.  I may see her for my check ups instead.

Then, clutching all my results and prescriptions, I took the lift back up to the ground floor after my last session.

At home I drank a botle of pink champagne with dh (we'd been saving it for this day.

Today I am grateful for this whole episode is finished and for the love and care of a dedicated team and for the doctor and even GG, who I'll sort of miss (I gave him a card and present too and he said some very nice things to me about how pleased he'd been to meet me and how nice I was, ahh).

Thank fuck that's all over.

I'll explain the future bit another day.  Back to that champagne now....

Radiotherapy # 32, 1 to go!!!!!!!!

GG was late yet again today, he's really letting it slip this week.  He said he was late because he had a 'baisse de morale' - he was feeling down.  wtf I am meant to say to that?  He's pretty weird sometimes.  Although he has been unfailingly polite, proper, reliable and usually on time throughout the last 8 weeks, I won't miss sitting by the window every day looking out for the lights on his blue Espace and rushing out of the door when I see them and listening to his rants and theories.  I'm lucky, though, to have come across someone reliable, that's the main thing.

Went in quickly today.  Teenage trainees still there smiling away through their awkwardness.  The session passed quickly and efficiently.

I registered for a 2 hour atelier 'Belle et Bien' at the hospital.  It's a session with make up artists and aestheticians who just help you to make you feel better about yourself.  It's scheduled for 31st.  I won't mind going back to the hospital for that!

The latest treatments don't seem to be doing so much harm as the previous 25, I guess because they're on a smaller area.  However, they are making my breast ache and continue to give me sharp twinges inside the breast and the area that continues to burn is smaller.  The black under my arm is flaking off gradually and there's a lot of new pink skin underneath.  My breast is still brown though, it can be permanent but I'm hoping it won't be.  I haven't worn a bra for a while (except when teaching) as even a sports bra irritates and is painful.

Last one tomorrow!  I'm grateful for that today.

A thought for a friend

I was kindly invited onto a closed group on FB for women who are a various stages of breast cancer treatment or remission and who are British and live in France.  It's a fantastic, supportive, kind group of women and a place where we can say anything we like and everyone understands.  There's also a lot of typically British humour.

A thought today for one of the members (the person who invited me to join the group) who went to hospital for her 4th chemo, which is apparently a notoriously nasty one which she was nervous about.

It turns out that she was highly allergic to the treatment and shortly after it was administered, went into anaphylactic shock and passed out with severe chest and abdominal pains.  The nurse had temporarily left the room but other patients in the room who were also receiving treatment pressed the alarm button and probably saved her from more serious consequences.

I felt so bad for her; we had our surgery almost on the same date and I was shocked that she had to go the chemo route.  Typically British and unselfishly (I thought) is that she was more worried about the other people in the room seeing her fall ill, some of whom were receiving chemo for the first time.

She's recovering and will recieve different treatments that are less intense but she must be feeling very shaken tonight.

Thinking about her.

Radiotherapy # 31, 2 to go

I can feel my spirits rising and the energy coming back now the end is in sight; I feel like I can start to breathe easy.  A friend invited us round on Friday for a celebration party for the end of my radiotherapy.  I was extremely touched and will be excited on Friday to share a takeaway Chinese meal and drink champagne.

I was seen pretty quickly despite being late again due to GG having other obligations again.  Whilst waiting though, the fantastic Ligue Contre Le Cancer came around again and gave out tea and biscuits.  They really are fantastic and make the experience much more bearable.

I saw one radiologist that I hadn't seen for a week or so, the one that was there when I was crying in the treatment room.  She kissed me a happy new year and said it was much nicer to see me smiling and we talked about why I was sad at that time.  I asked her about treatments in the future and was it true that one can only do radiotherapy once in a lifetime.  She said normally, yes but it depended on the dose received already; there could be a top up but otherwise, other treatments would be used.  So, if the cancer comes back I'd have to have chemotherapy and wouldn't get radiotherapy again.  But hey!  Let's hope it's gone!

Managed to make an appointment for the complete gynecological check up and ovarian/pelvic echographie.  The secretary was not impressed that the oncologist wanted me to have an appointment so quickly, so she gave me one in a week.  Not that fast eh?  I have to do the hormone blood test nil by mouth so I'll go along on Thursday.

I picked up the children from school so they could eat at home for lunch and then I went to work.  I needed a lot of energy to keep the enthusiasm going today.

Things I'm grateful for today:

My friend organising our little celebration, the warmth of the radiotherapist and the cup of mint tea.

Radiotherapy #30, 3 to go

All over France there are parents breathing a sigh of relief now the school holidays are over and the little darlings are back at school.  Frankly, me included, Christmas is always so exciting and full of stuff going on, family, eating, gifts, anticipation, cool parents letting the children stay up late.  But the fun has to stop and the real world starts again.  It was pretty exhausting at times and I lost my cool a few times.

GG was late today but he always lets me know in advance.  We arrived late but I was seen immediately.  Blue room today.  2 new trainees that looked too young - mere teenagers!  They were learning the ropes and a little overawed by the whole thing.  The Blue room is cold so I was glad when it was over.

Home quickly.  I so did nothing today - finished a book and started yet another one, advanced a few levels in Candy Crush.  Very light chick-lit is all I can get my head around.

Kine this evening.  Théo went first - he has injured his rib.  Then he stayed and watched me being treated - I felt it was ok for him to see because I don't have to get topless, just take off my t shirt.  My arm movement is slowly coming back and I have better and better reach and mobility, although the scar tissue from the lymph node cut is still very painful and the kine continues to stretch it, rather painfully it has to be said.  Théo told me that under my arm is purple, red, brown, black and pink.  He enjoyed his session and it was nice to share the experience with him.

Things I am grateful for today:

The radiographer placed my t shirt over the non treated area of my chest and shoulders to keep me warm in the cold room today.  It was a really thoughtful gesture.

I am still buzzing and grateful for the kindness of a lovely English lady who came over yesterday with a huge bag of stuff from UK for us all.  Oh what treasures!  Iced Gems, my favourite breakfast cereal, Cosmo and Good Housekeeping, Jammie Dodgers, books and chocolates for the children, Yorkshire tea,  green tea, white tea, cans of baked beans.........What was particularly nice is that Lovely stayed for a few hours and we took a walk by the river, it was good to chat and have a cup of tea together.  The chatting really helps and it's interesting to hear different people's take on cancer.  Pretty much every single person who's helped me and my family during the last 5 months (yes it's 5 months we've been living this nightmare already), seems to have had some experience of cancer in their lives - friends, family etc.

Radiotherapy # 29, 4 to go

Still upset about the breast lump/pain thing and dreading Tamoxifen effects (as if I haven't put on enough weight scoffing chocolate and crisps languishing on the sofa feeling knackered and depressed since November - almost entirely my fault but I feel like I've had the stuffing and motivation knocked out of me since the rads started), got up early to be showered and ready for GG at 8h30, rest of the family still sleeping whilst I sobbed in the bathroom.

Was seen quickly, got my timing for the last 4 sessions next week.

Hard to believe that it's nearly all over.

Kine in the morning too, he's still working on getting my shoulders down; I put them up without even knowing it.  I must look into finding and starting a yoga class, I used to love yoga and felt really good and healthy after the sessions.  I'd like to find that feeling again.

Plenty to be grateful for today:

 I'm grateful for a call from my lovely friend in London; it's been a while and she is always very calm and grounds me (apart from suggesting that I sold my handbag collection to solve our financial problems caused by medical bills and my not being able to work - no way ho-se :-), I'm hanging onto my bags!)

and I'm grateful for an unexpected gift in the post from my peachy friend who's been in there right from the start, this book, cute card and these pewter charms with such lovely thoughts behind them (read the card Charms of Wisdom).

I didn't realise that Jennifer Saunders had had breast cancer.  It was a shock to scan the book and see the word 'chemotherapy'.  I'm looking forward to reading it after I've finished all the other books that kind people have gifted to me.

One quotation that jumped out at me is 

"Cancer was like having a job without having to do any work.  Someone else does the planning and you just have to turn up.  Everything is mapped out for you".  I so identified with this and thought, oh yes that's what I've been feeling like.  And the thing is, it's a fuckin' unpaid job too!

What I liked less and didn't want to identify with, however, was her description of taking Tamoxifen

"I had started taking the drug Tamoxifen, which prevents you ever having any oestrogen ever again.  This basically means it plunges you into the menopause in one fell swoop.  It's fairly brutal and you go through all the accompanying side effects: hot flushes, weight gain; a sense of mourning for lost youth, sexiness and somehow the point in anything.  I did become depressed......"

But as my London friend said (and my Mum), side effects don't have to be the same for everyone.  Let's hope so.

What I am looking forward to is reading about Saunders time at school as we were at the same school at the same time - Northwich County Grammar School for Girls with a formidable headmistress, Miss Dines, who had a cane in her office and apparently used it (I was never on the receiving end, glad to say).

And last thing to be grateful for: my well behaved children who sat in the waiting room quietly whilst I was being kine-ed and when I felt shattered this afternoon, I told them I wanted a nap on the sofa, so they covered me with a blanket and found a documentary about sharks on Orange and watched it quietly, whispering to themselves - 'hammerhead, great white, 250kg, protected species' kept wandering in and out of my consciousness.

What is more amazing is that they were banned from the ipad today because they were so naughty yesterday and they didn't even try to play on it whilst I was asleep.  Good lads, I love you so much.

Radiotherapy # 28, 5 to go

Quite a wait today, the yellow door was closed so everyone had to use the blue door.  I saw someone I knew in the waiting room - the Mum of one of Loic's friends with someone who was going for treatment.  Délicate situation - I didn't know if she wanted me to acknowledge her or not.  I said hello in the end and we talked about Christmas and our sons then I moved a bit closer when the man had gone through and she explained that it was her father and started crying.  I felt so bad for her and said how sorry I was.  I explained my situation a bit and we chatted, then I was called.  No doubt we'll see each other again.  She's very nice.

I had my own tears tonight.  I saw my own oncologist who examined my right breast and found the lumps to be scar tissue and possible fat necrosis but not cancer but something that needs keeping an eye on.  I asked him if it would always be like that and would it always hurt.  Hé said proably yes and that was the risk I ran by choosing the surgery I had chosen.  Great.

We then discussed the hormonothérapie which will commence immediately the radiotherapy ends, ie next week.  I have a prescription for a hormone level blood test, a full gynecological exam plus a pelvic scan pré tamoxifan.  He reccomended the first surgeon I saw Dr Pink as my gyne as I don't have much confidence in mine.  At least he knows me and my case and he's no stranger to cancer cases.  The scan is to check I don't have ovarian problems.

Hé also talked about the possibility of hormonothérapie lasting 10 yrs not 5.

I cried on the way home despite GG trying his best to engage me.  I cried because I just want something not to be wrong - constant pain and lumpy right breast where already the nipple is ruined and this was my good breast.  The skin continues to fall off on the radiated side and the breast continues to shrink.  This is really a horrible horrible time.

Today I'm grateful for the nice lady in the post office who gave us calendars and the hairdresser who took out Loic's lice and cracked them dead with her fingernails when I thought they had all gone and she didn't mind continuing the cut.  I was mortified, she was lovely so thanks lady.

P-ink.org

I've seen photos of other mastectomy patients who have decided to do something different, more beautiful and make their scars (which go right across the breast for mastectomies) less obvious or replace them with something that, albeit is still a daily reminder of their cancer, is also a daily reminder of what they CHOSE to do rather than what they could not choose when faced with breast cancer.  I'm not sure what I feel about it other than if it makes that person feel better about themself and what they've been through, then it can only be a really good thing.  A body change that we've chosen is something entirely different to a body change that was imposed and unwanted.

I personally have not (should we say yet because you never know with this disease) had to have a mastectomy and hope never to be faced with this, although I was faced with it back in September and a clever plastic surgeon helped me avoid it, for the moment, at least.

So, good luck to this lady and her personal choice and more power to her.

http://www.upworthy.com/you-might-see-tattoos-in-a-new-light-after-you-see-them-on-this-woman?c=reccon1

Superbetter

I found this 20 minute video really interesting.  i'm going to look at the game superbetter on Apps for the ipad and see how it goes.  I think that what she's saying makes a lot of sense and some of the things she reccomends like being in touch with friends, playing games with my children, human contact really does help.  I just need to get my arse off the sofa more frequently!

http://www.upworthy.com/the-secret-weapon-a-woman-created-to-save-herself-from-the-brink-of-suicide-2?c=upw1

Stay with it, it gets even more interesting after 12 minutes but you need to listen to it all.

Happy New Year

Here are some excellent New Year messages from a website for new year Indian text messages:-

An all round lifestyle healthy wish:

May Your Hair, Your Teeth,
Your Face-Lift, Your Abs And
Your Stocks Not Fall;
And May Your Blood Pressure,
Your Triglycerides,
Your Cholesterol,
Your White Blood Count And
Your Mortgage Interest Not Rise.
Happy Healthy New Year 2014

Wanting to turn the page message:

Forget About What Happened In 2013
And Look Forward To More Promising
And Fulfilling Days In 2014.
You Just Have To Believe
That The Future Is Brighter.
Happy New Year

One to send to your boss or your deranged friends or best enemies:

May You Discover How To Ease Your Disturbed,
Overworked Brain Into Manifestation And Consciousness,
So You Can Disengage From Adverse Conditions,
And Modify Your Life
For The Best This Coming Year.
Happy New Year 2014!

Here's one for your ear:

Let There Be Outcast Of The Fear,
For This Entire New Year,
Wishing By Heart In Your Ear,
A Very Happy New Year!

And for your single girlfriends, (albeit unintentionally!

Be always at war with your vices,
at peace with your neighbors
and
let each new year find you a better man.
Happy New Year

Yeah, happy new year to you too.