4 years on

This time 4 years ago was one of the most scary, sad and terrible times of my life.  I still can't look forward to my Birthday on 26th September, as that was the day after I lost my breasts and this whole thing really kicked off - reality struck that day.

If you're going through cancer right now, I'm so sorry that you're in this position.  If you want to know how it might pan out over time, well.....

HOWEVER, that time has passed, I have moved on in many ways.  There are positives and negatives:-

Positive
I am much more assertive and will suffer fools less gladly.
I seize the day and find joy in many more things than before - small or large.  I know, cliché, but real.
I have found out who my friends really are, and have been surprised at the number of real, caring people that I have in my life.
I am doing something that I love whereas I was doing something I didn't like before.
I hug my children even more
I am more understanding, compassionate and caring (in my opinion!)
I have come into contact with great new people through the illness.
I have just started to believe that I am nevertheless lucky for what I have (this has taken time).
I am less hung up about going in a swimming pool since these summer holidays and I have re-found the joy I have for swimming (I didn't swim for over a year because I was ashamed of showing my chest area)  I hope that I'll be able to continue this now I'm not on holiday any longer (harder).
I know people now who don't know that I have had cancer.
I'm not a 'survivor' but I'm also not a victim.

Negatives
I feel life's precariousness every more keenly, I have had a layer of insouciance stripped from me forever and it is scary and sometimes my emotional skin feels paper thin.
I still feel the disappointment at the lack of emotional support  given to me by my husband and some members of my family.
I don't like sex any more (my breasts have gone, they were important)
My body is still misshapen and ugly.  I lost a lot of weight; thought that would help, but it didn't, so I put it all back on and realised that I still felt the same about my body whether I was fat or less fat.  It's just out of proportion without breasts, but maybe, recently, I give less of a shit about it (this should be in positives)
I still haven't found the guts to re-explore a reconstruction operation and this hangs over me.
Like everyone, I fear my yearly mammographs and have put it off this year.
I have remember to go to the chemists to get my Tamoxifen every month and taking that pill every day reminds me.
I am very scared that it will come back.

The memories of this time 4 years ago are clear but it is part of my past now.  It could become part of my present again, but I have packaged that period into 'the past'.  Although the threat is always present, I have learnt to live with it to an extent that it doesn't handicap me mentally.  And sometimes, I forget!

A good day

After a sleepless night I made my way to the posh radiology centre in Paris.  I was shown straight through and a smiling (!!) receptionist got me to fill in various forms because we wouldn't be in France if we didn't do a bit of paperwork, would we?

I have to admit that I had forgotten to get the prescription filled for the fluid that's injected into your arm during the MRI.  They had efficiently sent it to me and I did have time to do it, but I 'forgot' (mabye I just didn't want to acknowledge that the test was coming up).  I told them I hadn't had time and the receptionist was lovely saying that some pharmacies are out of stock too, so they had stocked up themselves.  I could use their supply and fill the prescription after the test and let them have the prescription fluid back.  Very cool!

I seem to remember having an MRI and a receptionist tutting and moaning because I didn't have the fluid, which I didn't even know about beforehand.  Today was different.

One of the radiologists came straight along and collected me with a smile (this so makes a difference) and put me in a little room with the gown, the strange dinner-lady hat and little blue slippers.  She came back and injected me with the catheter which didn't hurt much, considering how tense I was.  She was just so nice and showed that she was familiar with my case, saying, okay, we'll inject you on the right not the left and we'll use a small needle this time as your veins are so bad.

Then into the machine and another person also puts me into position.  I must admit the tunnel was a bit tighter than I'd been used to.  I don't think I'd put on that much weight!  I had my ball to press  to stop the world if I wanted to get off in one hand and a large pair of headphones playing jazz were put on my ears.  I think this is the first time I remember listening to music during an MRI.  I used my friend's trick and tried to count backwards from 500.  I didn't even get to 400 and it was over.  Lots of unpleasant noise and a cold trickling feeling when the liquid was injected, but I'm used to that and it was ok.  I kept my eyes firmly closed during the exam as I didn't want to realise how hemmed into a little tunnel I was.  I think if I'd have opened them, I would have freaked out and got all claustrophobic.  Some things are better left unseen.

It was finally over and I was helped out.  My needle entry point had bled a lot and the machine was quite bloody, as was my arm, but honestly I didn't feel it.

Then the wait..........if you remember, dear reader (and you are a dear reader bothering to read this), I needed to do a biopsy if the breast (s) was classified as ACR3.  The glamourous head radiologist - you can tell the one in charge, they don't wear white coats, and this one was wearing Chanel, called me into her office.  We sat down and she showed me the results on the screen.  She told me she'd betted her colleagues that I had been operated on the right hand side too.  I explained that they'd done a drastic reduction at the same time as the left and under the nipple is a large bruise, which feels like a ball.  She said 'ha, voila!  I knew it!'  She showed me the ball and the scar tissue on that side.

And then she announced the good news I had not even imagined I'd get: she was classifying both breasts as ACR2 because she could not see any  reason to do a biopsy, nothing suspicious, only scar tissue.  I had NOT expected this.  I had not expected to be able to walk out without the biopsy and the waiting afterwards for the results.  I really had not expected this.  I was thrilled and once I was outside I burst into tears and my legs went all wobbly.

I really feel like I can start to move on now.  Enough with this tense, uncertain time.  My next test is July for my annual mammo.  I have been strung up tight for months and months.  I hadn't realised how bad I was, but started to when I didn't want to leave the house except for work and when I realised that I had been stuffing my face with crisps and cake, to ease the pain.  And crying at the drop of a hat.

I can move on now!  Do you hear that, world?  I'm going to dare to bring up reconstruction again at the next appointment, but for the moment, I want to move on with less stress and sadness in my life.

Tis a terrible thing, this cancer thing.  You think you're out of the woods, but then you're not and if anything goes wrong again, the stakes are very very high - higher than they were in the first place really.

I'm gonna have a rest from thinking about this now.  Dear husband has been feeling my pain, but not helped me because I don't think he knows how to and he's so caught up in his own work mess.  But I could hear the relief when I told him.  He's brought a bottle to celebrate tonight, which is kind.

And my few friends that I've shared this new challenge with, thank you to you for listening and being there and sending me texts and emails and Watsapps.  Your continued kindness and thoughtfulness is very much appreciated.  And by the way, if any medical professional is reading this - see how far a smile and a bit of kindness and calm can do to help your patient.  It worked a treat today.

Here's a picture of the cake and coffee that I treated myself to after the exam (a mandarine éclair - just yummy) and here's the result I hadn't even imagined was possible today.

http://www.attn.com/videos/14208/black-eyed-peas-cancer-and-mental-health

Like the woman in this video says - you have a fundamental trust in your body but that is betrayed when you get cancer.  It's impossible to re-find it.  I think this is a touching video.  I have not been through chemo, thank goodness I was, up to now, spared that.  So I feel like a bit of a charlatan, linking on to this video, but it's true that mental health is so important for cancer patients and although I was supported at first, that support has pretty much dried up from the hospital and I don't know how to move on.  I really didn't think it would be like this.  I thought once I had my reconstruction, I could really get on with my life, but it's not turned out like that, at all.  I am feeling very stuck.

And so it continues.....

Well, last time I blogged I was expecting to see the oncologist on the weekend.  But guess what?  She cancelled.  Apparently there were too many chemo patients so she had to see them.  Fair enough, but one day before?  With no chance of an appointment before Christmas - well, thank you very bloody much.

So, two weeks ago, I finally had the appointment I was waiting for.  The oncologist prefers to put my case before the Commission again as there are radiology experts on that board who could best advise in my case.  So, we wait.  It was hard going back to the hospital again and I was surprised to find myself crying as I explained how depressed I was about this whole situation.

The oncologist said they would call me with the results of the Commision.  So I waited and waited and waited.  Now, two weeks after the appointment I found a quiet moment and plucked up my courage to call.  Lucky to get through first time.

Apparently the Commission want me to do another MRI and if the breast comes back classed as ACR3, another biopsy.  So, back to square one, like we were a year ago.

I quickly made an appointment for 31st January for the MRI in the nice radiology place in Paris and I wait, I wait and I wait to see what will happen..........

This whole situation is driving me absolutely crazy.  I am so stressed and tired of the whole thing.  I feel absolutely no support from my husband.  He has huge problems with his work, but really, he offers no support and not even a hug.  I am so disappointed in him.  I know, nearer the time he'll say, grudgingly, oh I suppose you want me to come with you?  Well, no, fuck you.  I'll go by myself and cope, like I have always coped.  Our whole family life is just splintering apart right now, for various reasons and I don't feel strong enough to deal with it.  What I really feel like doing is getting on a train and leaving, for good.

A year-long worry continued......

So I needed another ultrasound.  The oncologist reccomended a place in Paris, Duroc and addressed the prescription for a particular doctor.  I made an appointment for a few weeks time.

I arrived (took me an hour to get there) and it was very swish with nice receptionists (!) and really lovely offices.  I saw the doctor almost immediately but I wasn't going to get examined today - she explained that it was too soon after my last exam and I needed to wait 3 months.  So I made an appointment for November.  They were very nice, but I'd lost 2 hours of my day and I had 3 months to wait!!

November came.  I turned up, rather stressed after all this time and found out that apparently my appointment had been cancelled by phone as the doctor I had to see was not there that day.  I insisted on seeing someone - I'd cancelled stuff to be there and I was stressed.  So they agreed.

I had a mammo with a rather brisk in a hurry woman who asked me questions but wouldn't let me answer.  Then I saw the ultrasound doctor.  She was nice and put me at ease immediately.  She found the 'new stuff' in my left breast and said she thought it was very probably not anything to worry about at all.  However, she explained that this was new stuff, which hadn't grown, but still had to mark my left breast as ACR4 which means something, probably nothing to worry about but something nontheless.

She asked me if I wanted a biopsy.  I said I'd rather not but she said I should see the oncologist first then see what they reccomend me to do.  I left feeling reassured, but really really frustrated.  So I need a biopsy on the site of the biopsy to make sure there's nothing there?  Fucking mad.  This vicious circle could go on forever.   I have a feeling that I will never get to the end of this and a reconstruction is as far away as it could possibly be.

How has this affected me?  I am down, I am very down and have been since February.  I have moments when it's ok but I feel so tired of all of this and this constant buzz of worry which is just under my subconscious, always on my mind but not at the forefront.  'What ifs' that grow stronger then weaker depending on what else is going on.

There have been two ladies on a Facebook secret group (for English women breast cancer people who live in France), who have died.  This has affected me.  I have left the group quietly as it just wasn't helping me at all.

I'm seeing my oncologist on Saturday, which is why I think I feel the need to post today.  My nice oncologist has left the service unfortunately so it's either the pretty nice but busy woman or the man who I don't like.  We'll see.  We'll see what they say.

I've lived with this worry for a year now, this constant - let's see, waiting......it's not been nice.  I've put on all the weight I lost in anticipation of my reconstruction.  I'm even uglier than ever.  I'm sad and frustrated and want to get on with my life.  This is the face of cancer that people don't understand or see.  People have pretty much stopped asking me how I am, they forget and they have the right to forget, they see me getting on, but I am living with this,  you can't see it on my face, but it's still going on, it's nonstop.  It never stops.

A year-long worry

I haven't posted for ages.  I wanted to post with good news but the crappy (not bad, but just really annoying and worrying news) keeps on coming.

Firstly, can I say that I KNOW I am lucky.  I have survived up to now, I have my life a bit more back on track etc.  I'd like to say and nasty cancer nightmares are behind me, I've got used to my ugly chest and I worry less.  But guess what?  I can't.

The horrible biopsy was rien grave, yes.  I had my what is now annual check-up in July.  I had a mammo and the operator was very neutral, which worried me no end (been there before, that had a bad ending...)  She said, by precaution, I should have an ultrasound - don't like the sound of that 'by precaution either - and I couldn't have an appointment for two flippin weeks.  So I worried hard for two weeks.

I had the ultrasound in the morning and an oncologist appointment in the afternoon (with the nice, caring, listening oncologist).  I waited over 2 hours for my appointment and was only just in time for the hospital.  The appointment was a fucking farce.  I had told the receptionist that I had an appointment in the afternoon and I would need the results, and I did that because I'd phoned a couple of days earlier to check the results would be ready in time on the day. The ultrasound operator wasn't aware that I'd had a biopsy under MRI, she evidently hadn't read my notes at all.  I told her I had an appointment with the oncologist in the afternoon and she huffed and puffed and said 'why didn't you tell me?'  I said I told the receptionist, she yelled over to the receptionist and she said 'no I didn't know' - fucking liar.   When I was checking out, I asked for my previous scans, mri, results that I'd brought with me.  They couldn't find them.  And then the receptionist found them under her desk.  She also tried to charge me for the appointment, which happens every time, and I have to insist that I'm covered 100%, and she always backs down and says 'I can't see that on your Carte Vitale'.

I waited another 2 hours to see the oncologist. She had an emergency.  I understood.  She took one look at my results and said 'why didn't you give your MRI to the ultrasound operator, she says they weren't available'.  She lied.  So the oncologist kind of lost it and said - it was a waste of time you need to have another ultrasound somewhere else, these people are crap.

So I was back to where I'd started from with much time lost.

rien grave

A short and tardy update.

Vero, the oncologist's secretary called me whilst I was teaching.  I don't usually answer my phone during lessons, but I took the call anyway as she is so difficult to get hold of.

She said 'I suppose you haven't had the results of your biopsy, have you?'  I said 'no, what are they?' (heart beats very fast at this point).  She said 'ilya rien grave' - there's nothing serious.  She didn't say what it was (I didn't ask) but that's all I needed to know really.  I made an appointment to see the oncologist in early May for another Tamoxifen prescription and there we go.

That conversation that lasted all of one minute brought an end to my 2 months of worry!

Last time I had a biopsy I hadn't told anyone about it except my family.  This time I had a lot of people to tell the good news to.  I hope I've told everyone.  In a way it's been more pressurised as more people knew about it, but in another way, it's been nice to know that people care.  I posted on Facebook - a slightly enigmatic post, not wanting to give details, but to let those who knew what I wanted them to know.  I had a couple of FB friends who put ?? as a comment but you know if they want more information, they can pm me or even call.  I didn't want to put it all out there.  (Although here I am writing a blogpost).  Yes, I see the irony.

Anyway, we drank champagne to celebrate and I got a little bit tipsy on a night out with my friends that week and there we go, life goes on, another drama replaces that one.

I feel more 'ough' than 'yippee' - this has really taken it's toll on me and my family and friends, it's been a long 2 months, too long by far.  I thought I'd feel yippee but 'phew' is good enough, really.  My friend said 'oh at last you'll be writing a happy blogpost', but I don't think so, a relieved blogpost, for sure.

Not sure if I want to launch myself into the medical field again and do the reconstruction now.  Not sure at all.  Maybe this will change with time.  I want to keep away from hospitals for a while after that nightmare experience.  My Mum, who doesn't want me to do this operation and sees it as unnecessary plastic surgery (possibly a vanity operation, I dunno), said I was beautiful as I was, which was nice of her and very sweet.  I reminded her that I was still deformed and she didn't have to look in the mirror at that every day or avoid going swimming or the beach because of a mis-shapen body.  Obviously, there's still a need for change in my head.  But not right now.

Thanks so much to all of you who have sent messages, called and just been really nice, supportive people.  It's all about the people.