18 month check up - when you look better than your doctor does!

It was today.  I had a feeling it would be ok as I had the mammogram and ultrasound a couple of weeks back and I got the blood tests back yesterday and they looked ok.  But you never know until you've spoken to the expert.

It's been a long run of medical appointments.  I've seen the cardiologist three times for an assessment, an ECG and what he described as the 'effort test' when I had to pedal a stationery bicycle for ages and ages and he monitored my heart as I did it.  In fact, he said I kept going quite a long time, relatively speaking, and I was relieved to walk out of that appointment after hearing him say that there was no need that he could see for me to take heart medication and that I was just to keep an eye on my blood pressure.  It seems that the radiation hasn't damaged my heart after all.

I then plucked up the courage to do the mammo and ultrasound.  It was miserable as always there.  I waited for ages, but at least now I know it's going to take ages so I plan.  It was stressful, yes, of course it was.  There were more moments during the ultrasound when the operator kept going over and over my painful scars and over and over various areas.  In the end I cracked and said 'have you found something'?  She said not and that nothing had changed since last time.  I was relieved to get out of that appointment too, and to collect the results the next day.

And today I waited an hour - not so bad for this particular doctor.  There are always emergencies to be treated in the World of Cancer and I always feel fortunate that it's not me with an emergency so I feel ok about waiting.  There were a lot of old people in the waiting room today and a poor lady with a scarf and a mask over her mouth.  She was taken away in a wheelchair for chemo I presume.  It's such a bump down to earth seeing that, such a salutory reminder that I'm doing good and I'm LUCKY.

I have to say, when she asked me how I was, the word 'bien' came out in a very positive way, and I noticed that she was actually not looking so great herself.  When you look and feel better than your doctor looks, there must be something going ok!  In fact she explained that she's wearing a corset because she's hurt her back and it really does show on her face, she looks in pain.  Hope she's prescribing herself some good drugs, perk of the job I guess.

The Doctor and I talked about the decision that the Cancer Committee had made in forcing me to wait another year for my reconstruction.  I explained that it had made me very miserable.  She didn't comiserate but I felt like she understood and she told me I'd already done 6 months and I only had 6 to go and it was for the better and the greater good this wait.

I explained that the surgeon had told me that he'd prefer to operate after the 2 year mark when the chances of it coming back were significantly lower.  She said it wasn't about that at all but it was all about giving the flesh time to grow and recover and become more supple after the radiotherapy so the fat has a better chance of staying.  I believed her.  She's the dr that got me through radiotherapy.  She knows what she's talking about.

Still odd to be examined again but I've sort of got used to it.  I had an anxious moment when she put the xrays on the screen to examine them.  I had a horrible thought that she'd find something they'd missed at the Cabinet.  But she didn't and I was pleased to hear 'you're fine'.  I don't have to have a mammogram for a year now but I'll see her in January and I have my prescription for Tamoxifen to keep me going another 6 months.

It was another appointment I was glad to leave and walk out of into the sunny day, hopefully leaving behind the hospital for another 6 months.

Next stop belated appointment with Doctor Pink for a gyne to make sure the Tamoxifen isn't giving me ovarian cancer.  Great.

And then, the dentist (which I'm quite looking forward to because it'll mean all the other serious stuff is over for a few months).

And then the summer!  Yey!

Tattoos

I've done a few tattoo posts.  Many women find their 'new' bodies more acceptable and beautiful with tattoos, especially, it seems, after a mastectomy.  It's really not my cup of tea this tattoo business but I might find myself having one on my very pale grafted nipple to even the colour out, or maybe I won't, I'm scared it'll hurt or be the wrong colour or something!  However I think if those women who do have them over their scars feel better about themselves, then this can only be a really great thing.  Good on them for finding the right thing to help them along.

Anyway, here's another bunch of tattoo pictures.

http://diply.com/auntyacid/tattoos-inspirational-art/138274

This may make you cry

https://www.facebook.com/holley.kitchen/videos/vb.733071868/10153490757561869/?type=2&theater

This may make you cry.  I love how this woman says what she says.  She is my image of a brave person.  She would not say she is brave, she would say, like I did when people said I'm brave, that we have no choice we just go on because we have to.  But she IS brave and her little video deserves to be seen by many.  It's more effective without the music, I found.

It is good to try to knock that bull**** stuff people say on the head.   It certainly made me think about what I've said to people in the past.  I remember at the Cancer House asking an old lady 'how are you?'  She shook her head sadly and said 'not great right now'.  I wanted the ground to swallow me up, I felt crass and stupidly insensitive and I didn't mean to be at all.  In the Cancer House and in Cancer World, you don't ask people how they are.  You say, 'how are you today?' or just 'hello, good to see you' is enough.

Good luck Holley Kitchen.

Losing it (and gaining it)

Ha!  Cryptic title.

It's been a long time since I've written here.  I felt like I've been sort of saving up stuff and then never finding the time to actually write in between homework, housework and my work.  (Yes, lots of 'works' in that sentence, just about sums things up right now.

But the big holidays are round the corner and the sun is shining so positivity reigns!

I was so terribly disappointed that I have to wait another year for my breast reconstruction.  It felled me and made me quite depressed for a moment back there.  However, my sister said 'you need a project to get you through this year'.  She was right; I needed a focus and something to make me feel better and more positive.

The stinging remarks that had been made about my weight by various (every) health professional I met since I started this adventure in 2013 had been weighing heavy (ha!) on my mind and really not helping me feel better about the my breasts being mutilated.  Whenever I thought about what this cancer had 'done' to me, it always came back to body image as the most important thing.

Then, by chance JLo handed me a book and said 'don't take this the wrong way but I thought this might interest you'.  It was a diet book, a fun diet book, a psychological diet book, a realistic diet book written for weaklings like myself.  I liked it and it made my decision clear - that my project would be to lose 15kg before I see the surgeon in September.

Better health, feeling lighter, feeling better about my body image, feeling proud, this ticked all the boxes.  I started the diet the next day.  It's working.  I'm now 8 weeks in with various slip-ups but never mind, not huge ones and the eating plan does give you a lot of freedom.

So, I've virtually given up caffeine (I was on that road anyway since I came out of hospital), I try not to eat sugar  and sugary foods.  I don't eat carbohydrates.  I don't eat 'carby' veg.  I eat a lot of protein and salads and vegetable and I drink a lot of water.  After 2 weeks without alcohol, I could drink a little and I do drink a little.  It's not an anti-social diet at all.

To be honest it's a bit like the Atkins and the eating plan my GP reccomended, the GI Diet, which I'd tried before and liked.  And it is working for me!  At the time of writing, I've lost 8 of those 15 kg.  It's an up and down and overall slow loss now but the graph is going down dear readers!  I'm nearly back to the weight I was when I moved to France 15 yrs ago. 

And I'm feeling good!  Much much more energy (visibly).  I have the energy to do stuff in the house now when I used to slouch on the couch after my work and didn't have the energy to do housework.  My leg cramps seem to have stopped (maybe because I'm drinking so much water?).  I don't feel full and bloated any longer.  I am making healthy, informed choices about my food.  The foot pain that made me feel like a grandma seems to have gone pretty much.  I used to have terrible pain and could hardly walk on my foot if I sat for a while or stayed still (teaching 1:1 for example)  I used to virtually crawl or limp across the room or upstairs.  It's just gone!  I have less (virtually no) wind and my skin is good and my eyes are clear.

The diet is here Pig to Twig

It suits me.  It might not suit you.  You might disapprove of it.  You might love it, if that's what you're looking for.  I am glad my friend put that book in my hand.

My change in body shape means that I'm much keener to look at my naked body (remember I couldn't do this for over 6 months after the op).  My breasts are ugly still, this is no miracle cure!  But my shoulders and chest are a nicer shape and I'm beginning to believe that this operation will take place and I will one day have the same sized breasts.  And they will look good on my changed body.  My muffin top has decreased by 8cm, my hips by 23cm, my waist by 11cm.  My chest has gone smaller.  My bras are on the tightest hooks.  I have less boob, but this can be fixed.

What is great is that I can go into a lot of clothes shops and buy stuff or just try it on and sometimes it's too big!!!  Sometimes it doesn't suit, sometimes I love and buy.  But I am so enjoying feeling feminine again.  I've started wearing heels now my feet don't hurt.  Sometimes I look at myself in the mirror and think that I genuinely look GOOD!  This is a big deal for me.

So losing it means I have gained a great deal, notably my confidence and a lot of that old mojo back again.

Let's hope it continues.....

wtf?

http://www.theguardian.com/australia-news/2015/apr/22/none-of-its-true-wellness-blogger-belle-gibson-admits-she-never-had-cancer

This woman needs help.

Yet another charlatan who has 'cured' her 'cancer' with nutrition and magnet treatments.  How irresponsible and wicked to write those things.

I love my boobs but they have to go

watch this short, moving video

Here's some news from the Guardian.  Claira Hermet, 27, decided to undergo a double mastectomy as a preventative measure as her Mum and sister died of breast cancer and she didn't want to die of it too.

Brave girl letting the cameras see her, firstly topless and secondly, after surgery.  She is a courageous person who has taken control over an 85% chance of getting breast cancer.  Good for her.  I like her plain, direct speech.

Alternative cancer cures

 

http://www.theguardian.com/science/blog/2015/mar/04/why-media-coverage-of-alternative-cancer-cures-is-dangerous?CMP=fb_gu

It's true, when you get a life-threatening disease, the thought of not treating it in the conventional way is attractive.  No blood, no scars, no radiation burns, no chemo!

However, alternative remedies do not work, as this article explains.

I remember seeing a Facebook post from a woman who had burnt her skin with black salve and apparently removed a tumour in her breast by herself.  I don't know what happened to her but it was so misleading the way she presented it with before and after photos.  Look, it doesn't hurt!  I'm sure it hurt like hell and for all sorts of reasons it probably didn't work.

When we are desparate, we are vulnerable and we grasp at straws.  Journalists should behave responsibly when talking about alternative 'cures'.

This is what the American Cancer Society says about black salves:

http://www.cancer.org/treatment/treatmentsandsideeffects/complementaryandalternativemedicine/manualhealingandphysicaltouch/cancer-salves

Basically, don't go there.

The Scar Project, Canada

http://l.facebook.com/l/9AQEGsrlTAQE-uFRF_IU-yNQPow-khCqSq1mB_R47Un_lPA/blog.thebreastcancersite.com/scar-project-canada-portraits/?utm_source=social-paid&utm_medium=bcsfan-kw-cpc&utm_campaign=scar-project-canada-portraits&utm_term=20150213

A lovely, well meaning friend sent this to me today.  The Scar Project is something that seems to be travelling everywhere.

But you know, I think I don't really get it.  I understand that the women who took part feel empowered and I guess that if this is the only outcome of this project, that is a good one.  I also understand that it might make people more sympathetic to breast cancer patients and (the word that I hate) 'survivors'.  To see what they're living with underneath their clothes might be shocking.  I certainly had never seen such photos before I had the disease.  It might have helped me to imagine how I would be and maybe show me that there are other people who have been through it and are living with the after effects.  Or they might have made me very frightened.

The thing I appreciated most in the commentary in the film was a woman saying that once the disease is over people think that life is back to normal and that, yes, there were normal times when she felt normal, but mostly there were times when she felt she had been through something very powerful and that living with the scars was frequently difficult and not normal at all.  That I do get, I understand.

My friends look at me and tell me how healthy I look, how lovely my eyes are, my skin, my smile.  I am glad for those compliments, truly, and in fact there is a shot on this video where the camera focuses on an attractive woman's face and then slowly pans down to her ravaged chest.  So I think I am starting to believe my friends, that people look at your face first and yes I know nobody sees my breasts and the scars and the ugliness (and mine are not as ravaged as some of those on the photos so there's something to be grateful for).  But, I know what's underneath and I am the one to look at it in the mirror and hide it from my husband.  I'm the one who won't be showing it on the beach this summer.

In fact, I also chanced up this news item whilst I was looking for an image: Facebook allows post-mastectomy photos.  This is thanks to a petition started because the Scar Project photographer wasn't allowed to post the Scar Project photos and share them with the world on FB.  "sharing photos can help raise awareness about breast cancer and support the men and women facing a diagnosis, undergoing treatment, or living with the scars of cancer," it said.  Good on you.

http://www.news.com.au/technology/facebook-allows-postmastectomy-photos-following-petition/story-e6frfro0-1226662990480

"By removing the photos, Facebook is sending us a message that our struggle with this disease should be kept in the dark."  Absolutely.

The last word has to come from my son, however.  He saw what I was looking at on the computer writing this post and asked what it was.  I explained that some women have to lose their breasts when they have cancer.  At first he said 'is that what you're going to have to do?'  I reassured him, no. (let's hope eh?)  And he said, with the innocence and honesty that only a child can have 'in your head Mummy you should feel glad because yours aren't as bad as some of those ladies.'  So, in my head, glad it is then son........

Another delay

The surgeon called me when I was grocery shopping today regarding the lipomodelling.  He said the Commission okayed the decision but only after 2 years after treatment, when he'd always said it was after one year so he was adding a year.  I was stunned and my heart fell to the floor in disappointment.  I asked if I could call him back later.  During that call I understood better.

His 'expert' at the conference in Lyon told him 2 years and the Commission told him 2 years after treatment.  I didn't understand why he'd led me on by saying one year all this time.  I'd been waiting waiting waiting.

He said that lipomodelling was so relatively new (for post BC patients) that at first he'd warned me that the commission might not even ok it (this I remember).  And because it's so 'new', the guidelines are evolving all the time.  In fact, one of my BC FB lady friends told me she was told one year and then it changed to 2 years.

Because the rate of recividism is so much higher in the first two years following treatment, and because lipomodelling can impede mammograms and tests to detect cancer, the guidelines are now 2 years so that the highest risk period is over.

He said, rightly, that he could not go against the Commission and I understood that.

But what a fucking blow.  I am SO angry and SO disappointed.  I have to live in this shitty body for another year looking (or not looking) at those ugly breast mounds, hiding on the beach and at the pool (in fact I just don't go now and that's a shame as I really enjoyed those times with the children).  And I was looking forward to not being embarrassed about getting undressed in front of my husband and turning my back.

I don't think our marital relationship can survive another year like this, with me feeling as I do.

I was so looking forward to saying goodbye and squaring that circle, coming to some sort of end to this whole process but there's always something there to remind me

I KNOW I should be glad to be alive, practice gratefullness, yes I'm lucky to have survived.........etc.  I AM grateful for all those things (although you might not think so sometimes in reading my posts, but they are always of the moment like this one to reflect the roller coaster that is cancer) but I just want it to go away now and get on with my life which I'm trying very hard to reconstruct.  But unfortunately I'm not allowed to reconstruct the thing that is causing me so much pain - my breast.

Interestingly, if I had had a mastectomy I could have had reconstruction 6 months afterwards but I figured I could live with crappy breasts for a year rather than 6 months with no breast and a really really big op to reconstruct.  That taught me, didn't it?

I am really really pissed off and sad.  I have a sentence of yet another year.

And the story continues.....

 

I had my long eagerly-awaited meeting with the surgeon last week.

He explained all the cons of doing the lipomodelling, some of which I knew already, some I had never heard before:-

* The procedure might not work and the injected fat would then leak out of the cuts he had made to inject it (didn't know this)

* The fat might not 'take' as, after radiotherapy, all the tissue in the breast mound is dead (as well as, hopefully, any stray cancer cells) as the fat has no living tissue to latch onto and grow (who knew that fat cells grew like that?)

* The injection of fat might bring calcifications and if they are spotted on the mammogram, they would necessitate a biopsy so I might have to do a lot of biopsies as I would have a lot of cancer scares afterwards:-(

* There are the usual risks of surgery - death, complications, pain etc etc (he didn't actually say 'death' but......the thought is always there for me)

* It might require two procedures as some of the fat may be absorbed by the body (this is good, I expected 3 or 4)

* All the fat injected might be absorbed by the body and we'd be back to square one.

* if this doesn't work, he *may* be able to put in implants but that's a whole different thing and I could tell he's not happy to go down that road at all.

I had the idea of going back to work the next day but my friend said that she knew someone who had taken one week every time she'd had the procedure.  The surgeon said the surgery would be done on an out-patient basis not requiring an overnight stay but if it was done on a Thursday, I should rest Friday, Saturday and Sunday and should be right as rain for work on Monday.  Bearing in mind that this is the surgeon who kicked me out of hospital too early, in my opinion, so maybe a week is more realistic.

The proposal to do the surgery has to pass by the Cancer Commission in my department.  They will sit next week.  The surgeon was also going to a seminar last weekend and he took photos (no, not of my face!) to show a colleague who is a pioneer in this type of surgery to ask his advice.  He thought that the advice he would get is that it's ok as long as I'm under close observation for the rest of my life.

He asked me what I think of my breasts.  I just pulled a face ' where to start?'  I said the only positive thing I could that was my nipples are the same level (not the same colour but the same level).

He was also very interested in my weight (which has gone up 4kg since I saw him last March) and he told me to lose weight as the fat on someone less fat is better quality fat - even my fat is no good! He can join the queue.  Everybody, every doctor, nurse, physio, has told me to lose weight since this whole episode started, it's like my body is not my own any more and I'm now ok to be attacked from all directions.  The effect on me is to make me miserable and depressed as it's nigh on impossible to lose weight with these bastard pills I'm taking, which have given me the post menopausal spare tyre round my non existant waist, which makes me miserable and when I'm miserable, guess what?  I eat.

I have already started doing more exercise this year (putting in two more sessions at home each week), cutting out alcohol at home in the week (not that I drank a lot but it was becoming a glass of wine or two every night again).  Trying to eat healthily, have been eating more healthily since the operation but I do slip. Blah.   I realised that since I was 18 I've been battling with my weight, that's 30 years.  I am thoroughly sick of it.

I am wondering if I should do this procedure or not.  It feels wrong to be planning an operation that's not for a life saving or important reason and if anything goes wrong, well, it'll be my fault, Im sure people will say 'told you so, that's served you right for being concerned by your appearance'.  I tried to discuss it with dh but he just said 'you're going to do it whatever I say so I can't be bothered to say anything'.  I won't be counting on him for support after the op.  Yes, marital relations are not great either.....The January blues are well and truly here and I can see no sign of them stopping.

You know, I just want to be back to being a person who doesn't wear a prothesis every day, someone who doesn't feel absolutely revolted when they accidently see themselves in the mirror, someone who feels deformed and embarrassed, someone who doesn't have to hide and feel self conscious about themselves.  Before, I was fat, yes, but I was ok about my body and didn't feel so bad because I did exercise and could see it was all in proportion, but since this has all happened, I feel a disgust, deformed and powerlessness that I never had before.

Ho hum!

ps I forgot to say that the surgeon also told me that lipomodelling can CAUSE cancer because the fat could deform cells and start it all over again.  That is the one that is stressing me.  I don't know if it's true either.

This address has a clinical survey done about lipomodelling and it seems reassuring to me, unless you're the 1% of course.....http://www.nice.org.uk/guidance/ipg417/chapter/2-the-procedure