I Touch Myself

 

This video has been released on 21st April, on the first anniversary of the death of Australian, Chrissy Amphlett, lead singer of the Divinyls.

https://www.youtube.com/watch?v=FeaO2BrrIf8

It features well known Australian singers Olivia Newton John, Megan Washington, Sarah McLeod, Katie Noonan, Sarah Blasko, Suze DeMarchi, Deborah Conway, Kate Ceberano, Little Pattie and Connie Mitchell.  To be honest I hadn't heard of all of them (where was Kylie??) but hell, they all have great voices so who cares?  The video is simple, yet hauntingly sad, touching and beautifully shot.

Amphlett was a campaigner for womens' health issues and in particular, urged Australian women to 'touch themselves' - do self breast examinations - regularly - get to know your breasts and what is normal so you can spot abnormal or any changes - and don't take 'no' for an answer if you feel something is wrong.

Her story resonated with me because firstly I love that song, it is so sexy and womanly and cheeky from the great intro right to the last breathy spoken words.  I remember singing it out loudly back in the 90's.  Only a woman could sing this song (it would be really creepy hearing a man singing it, no?), it felt like a self affirming, sexy anthem for all sexually active women who weren't ashamed of it.  Here's the original version, just for pleasure.

https://www.youtube.com/watch?v=wv-34w8kGPM

Secondly, I found the tumour that I had by 'touching myself' in the shower, where I did all my breast examination.  And a surgeon said that, despite its size, the tumour wasn't palpable or immediately obvious during examination.  He said I had 'le flair' - an instinct or feeling that all was not well.  My gyne had missed it months earlier during a breast examination.  So, I believe that self breast examination is crucial.

Thirdly, after watching the video of Amphlett on the clip below (which made me cry - watch it, it's feisty!) which was shot during the time when Amphlett had just discovered that she had breast cancer and followed her into hospital for the double mastectomy, I discovered that she had also dealt with another debilitating illness - MS - as if that was not enough.  She seems like a warm, funny, take no nonsense type of person and someone that everyone would like to know.  The cancer did not show up on scans or mammograms, but she pursued the doctors for a biopsy, insisting that she knew all was not well.  She was right.

She was 51years old when she had her operation, I was too.

She couldn't receive radiotherapy or chemotherapy because of her MS and she fought a long battle with breast cancer, eventually dying in 2013.

As she says, of 'I Touch Myself' - 'it really should be the breast cancer song' - well, love, now it is.  Thank you.

RIP Chrissy Amphlett 25/10/59 - 21/04/13

https://au.news.yahoo.com/sunday-night/features/article/-/22501836/why-sunday-night-wants-you-to-touch-yourself/

Life now has a price tag

http://www.bbc.com/news/health-27113258



What price 6 months of life?  £90 000 for some.

A drug called Kadcyla exists and it attacks cancer cells from HER2-receptor-positive cancers that have spread throughout the body.  It can give the patient up to 6 months more time to live and doesn't have the same gruelling effects as chemotherapy.  Sounds good so far?

Well, yes but the company who produces the drug have put the price of it at £90 000 per year and it has been rejected as a possible treatment that's going to be available on the NHS because it's too expensive.

It's the third breast cancer drug that Roche have produced that has been deemed too expensive by the NHS and although it has been available through the Cancer Drugs Fund up to now, this will stop in 2016, or at least be 're-negotiated' meaning the NHS hope that Roche will put the price down I guess.

The cost of the drug, according to Roche, reflects the years of research required to produce it.

The tumour I had was HER2 receptive which is why I'm taking Tamoxifen, which is meant to inhibit the hormones and thus development of further cancer.  I am lucky that the cancer had not spread.  This is scary to write and it feels like I'm tempting fate.  I say 'it had not spread' with the proviso that this is a 'so far' because in those moments of doubt and fear, of which there are many for us post cancer patients, many nightmare scenarios are imagined, every sniff, lump, joint stiffness, stomach ache, sore throat, chest pain could potentially be a cancer.  Sounds stupid and hypocondriac to say that, but for many people this is a daily reality, especially when an important moment like an exam, a meeting with the oncologist, the surgeon, a mammogram is coming up - the pressure mounts and stress levels go through the roof.  We don't want to go back there and we want to hear the news so very much that the cancer has not spread or come back.

Anyway, now we know the price of 6 months of life - £90 000.  I don't dare to imagine what I'd do if I was in that situation.  Would I remortgage the house to pay for that extra time, putting the future of our home into jeopardy, would that be fair to my family?  What's the pay off? Hoping it would work of course.  I never thought about these conundrums personally but since cancer has touched my life, I do.

It also brings up that old stereotype of the greedy drug company against the defenceless patients who want more life which is a good journalistic story.  I'm not sure if I buy into that way of thinking but it would be hard not to if I needed the drug and couldn't get it.

What Suffering Does

I am seriously not in the category of someone who has really suffered, really, really, so far thanks be to the universe and I am grateful for that, so don't think I am relating my experience to this article.

However, I thought that this was an interesting read and inspiring.

http://www.nytimes.com/2014/04/08/opinion/brooks-what-suffering-does.html?smid=fb-share&_r=0

It raises the question, what's it all about?  Which is one I'm still slightly struggling with to say the least.

Maximise happiness? Is that the aim?

Moving and elegant short film about breast cancer

http://idsein.fr/fr/films.php#

in French.  Very well done.

Institut de Sein

 

I decided to get a second opinion about the breast reconstruction, seeing as my surgeon seems so loathe to give me details and remains so sketchy that I simply cannot wait 9 months in this state.

dh wrote him an email saying how upset I am but he hasn't answered as he's on holiday (probably off on some free jolly in the Carribean).

So I have an appointment at L'Institut de Sein in the posh arr of 16th in Paris.  I explained my case to the receptionist and said there are some contra-indications to lipomodelling and I wanted to discuss them with someone.  So I'll see a doctor at the end of April.  There's no hurry, I just want to feel that I have something a bit sooner than January.  The receptionist explained that the surgeons often use the technique for breast reconstruction but that, of course, my papers would have to go before the Commission and I would need to be approved for the procedure beforehand.  So, this is what my surgeon has told me, this makes me feel better about him.


The appointment will cost 120€ which we can barely afford right now as I just found out that the claim for my unemployment benefit has been refused (so I have to go and see them asap and wade through the nightmare that is the French unemployement system).  But, despite the expense, I think it will be worth it to see what they say and I hope it puts my mind at rest.  I can't imagine I can afford to be operated on there, but at least it will give me information and confidence, I hope, in the surgeon that I'm lacking right now.

Here's what they say about lipomodelling (sorry in French, it's not translated on their site).

lipomodelling

At the end it says that the procedure is so relatively new there is little time for significant reflection on the procedure, so they have some 'reserves' about the procedure.  They also state there are studies being done and they should have more information in several months.

10 persistent cancer myths de-bunked

here

Cancer Research have published this on their website.  I think it's a good article which I wish the uninformed (and sometimes those who are meant to be informed) would read.

There are so many opinions about what causes cancer, what you can do to avoid it, what you should do and as a cancer patient, one is very vulnerable to such opinions.  I think everyone wants to help deep down but sometimes I wish that I hadn't heard a chance remark or a certain piece of advice, or talked to a particular person.  Even fellow cancer bloggers say their biggest problem is spam comments from companies promising a miracle cure.  There is always, sadly, someone ready to profit from the vulnerable or desparate. So, hear this, there is NO miracle cure and if it did exist it is certainly NOT sodium bicarbonate!

I sort of dispute #2, about there being no superfoods because I think that food must be some play a really important part in our well being but I agree, there are no superfoods that will cure cancer.  I think that the book 'anti cancer' does explain why some foods are better than others for people who are trying to stave off cancer, but there is no food that will cure it, for sure.

#4 is what my ONCOLOGIST said to me!!  Cancer likes sugar.  I have felt so utterly guilty about my previous diet since he told me that, like it was my fault.  So thank you, Cancer Research, for that and je t'emmerde my oncologist.

#2 my taxi driver who took me to the radiotherapy appointments told me about a lady who was trying a 'treatement' in order to avoid chemotherapy and that it was all a big scandal because the drug companies don't want us to know things so they can continue to make potloads of money.  I don't know how that lady got on, but I hope she's doing alright.

And poor sharks, they do get cancer but they've probably had their fins cut off and eaten in a Chinese restaurant before they could die of it.

Under the Red Dress

 

Ok so I'm on a roll today, a bit frantic to be honest.  I googled 'beautiful breasts' and got 87 700 000 hits.  I googled 'beautiful breasts after breast cancer' and I got a surprisingly high number of hits
68 400 000 but when I looked at them, they did not show anything beautiful, just make up hints, reconstruction stories and general breast cancer sites.  There were no beautiful pictures of breasts after breast cancer, at all.

There was, however, one site that I'd seen already on Facebook.  This young woman had a double mastectomy and a hysterectomy because of breast cancer.  A photographer took and posted these photos of her on Facebook and they were banned from FB in the end because they were topless photos.

There were also some silly trolls who posted cruel and nasty comments after the pictures, but you always get the crazies, don't you?

"Beth and Nadia’s message was that we have no idea what people are carrying around with them underneath all their layering and clothes. We have scars, we have flaws, we have insecurities — but every body is beautiful and tells its own story. "

Have a look. 

here

I have various reactions to these photos

- I feel really really sorry for this girl, who is obviously young and beautiful, she must have gone through and be going through so much pain and distress
- she is going to need a lot of courage to get on with her life and do 'normal' stuff
- she already has a lot of courage for doing this
-what the hell am I moaning about when she's gone through this
- She looks great in the photo with her red dress on
- Her naked body looks ravaged and ugly
- I don't understand how the patronising platitudes of 'you are still beautiful' can be dished out like that, I really don't see that she is beautiful, this is not my idea of beautiful
- why do I think she is beautiful with her clothes on and not beautiful naked?
- what is beauty?
- I'm glad she posted the photos, I think she's brave to show herself
- maybe the photos will stop people thinking of breast cancer as this pink fluffy thing that means you just have to post the colour of your bra to 'raise awareness' for.  Far too many women are 'aware' of this disease, we just need cures and better, more compassionate treatments that help us feel human again

Meeting with Surgeon

 

So, the long awaited meeting with Dr F whom I last saw in December.


He examined me - doesn't seem to be anything wrong, or indeed anything right - no comment.  I just have to massage the huge lump (bruising apparently) in the right breast each night so it will go down.  I have been doing and it is going down a bit.

He took photos of me again and was very excited that I'd lost 5kg, more excited about that than anything else in fact.

He explained that he couldn't do anything for me until one year after the radiotherapy had finished - 8th Jan 2015 (this he had said right from the start).  However, he is now saying that lipomodelling is not advised for breast cancer patients and he thinks he will have problems getting it approved by the Cancer Commission.  If he can't do that procedure, the only option is an internal prothesis but this may pose a problem in that it's difficult to re-operate on an area that has already been made fragile and I may have problems with the closure of the incisions.  He also made it clear that it was my choice and I may, at that point, not want to do anything.

I asked him about skin sagginess if a lot of fat was extracted from my stomach and he said that he wouldn't take too much and he'd also take it from the hips too, so it shouldn't be a problem but he did say that he'd be happy to do a tummy tuck if I wanted!!!  Anything is possible, he said.  Yeah, I thought, if you have the money.

He suggested that when I next see the oncologist, I broach the subject with her and sort of start a campaign to get the procedure approved, but not to tell the oncologist that he'd told me about it.  What????

I don't know whether to go somewhere else (more drs appointments, more getting my tits out, telling my story), start a campaign, get lots of info from various sources regarding this and campaign the oncologist and the surgeon but then I think, surely it shouldn't be like that?  Should it?

lipomodelling, an important advance in breast surgery

We finished our meeting with all the platitudes - get back to your normal life now, remember that you were "this close" to a mastectomy, remember that you were "this close" to chemotherapy, so you have to consider yourself lucky.  Live your life tranquil and see you next year.  He didn't seem bothered that I hadn't had the courage to look at my "breasts" but he was keen for me to live my life for my husband and my children.

I am SO pissed off.  Right at the beginning, when I made my choice, I made it in the knowledge that lipomodelling would be the next step and yes, one year after radiotherapy.  Each time I see this guy, it seems to be less and less likely, he seems to be backtracking each time.  Maybe he's trying to prepare me for a negative outcome.  But how the hell can I live my life 'tranquil' when I'm in such a flux and not knowing about the future?

I cannot, simply cannot envisage a life when I have to stick a piece of plastic in an sort of bra (not even a real one) for the rest of my life.  Whenever I think about the summer I get hot and cold thinking about not being able to go on the beach in a swimming costume, about wearing loose summer clothes, about going swimming with my kids.  I look GROSSSSSSS!  I have barely one tit.  My body is lopsided and weird.  This is a real setback.

So now I'm going to live my life tranquil for 9 months.  Yeah of course I am.

What, dear reader, would you do?