Showing posts with label BRCA gene. Show all posts
Showing posts with label BRCA gene. Show all posts

Saturday, 6 October 2012

91. Operation Finale : Phase One = Complete

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I'm lounging in bed with lots of pillows, cups of tea, Jurassic Park and moggits.  Two days ago I went in for my (take a deep breath......) bilateral breast reconstruction liposculpture fat grafting, nipple reconstruction and dog ear revision surgery.  Basically, I had my lardy bits pummelled out and pumped, very expertly, into my reconstructed breast tissue, had the ends of my scars snipped off and finished and had some nipples made from my own skin, which all took 4 hours.  I'm still a little swollen so it will take a while to see things settle down and I go back to see comedy surgeon in 2 months time for a review.

I've been hanging onto an extra 8-10lbs I gained over the summer (thank you implant) in anticipation of this surgery.  It doesn't look like much but they are much fuller, about a whole cup size and instead of being empty in the top of the bra cup, they now meet the material and fill the cup - AMAZING!!  From a 35A to a 36B again.  I may lose 50% of the fat injected but that is remedied by one or two more liposuction sessions.  I've never posted photos and I plan to dedicate a whole blog post  from the beginning to the end when I'm complete, like closing the book on things and demonstrating visually just how amazing plastic surgery is these days.


My breast reconstruction was 3 years 7 months ago now and over the last 2 years, after being passed to the Plastic Surgery team, I have developed a really relaxed and jovial relationship with comedy surgeon, an expert in the field of breast reconstruction and correction of breast asymmetry.  He treats me like a person, not a lump of flesh and we have a good laugh.  He knows that I expect his very best work and I know that he gives it.  

I was very impressed with his plastic surgery team, one very handsome surgical assistant and one very handsome anaesthetist - sweet!  The anaesthetist team were excellent, introduced themselves to me individually as I led on the operating table. 

Handsome anaesthetist put a cannula in my hand and joked about stuff whilst everyone else hooked me up with sticky monitor pads and tubes.  Then I had the G 'n' T drowsy stuff which always makes my heart race.  It could make you feel panicky if you let it but you have to breath deeply and relax and go with it, you are in expert hands.  They then give you the proper stuff and you are gone in seconds.  The next thing you know you're in the recovery ward.  I'm not sure if someone sits with you the whole time you are still under, waiting for you to rouse from your induced sleep, but there has always been someone right there when I wake up.  It is so comforting to have someone there.  I talked gibberish but knew where I lived and my name so that was good news.  Then, as if my magic, I am on a ward, so I guess I passed out again and missed the trip through the hospital corridors and lifts.  

Two hours later I was starving and eating cheddar Burts crisps with my husband by my side, then felt nauseous and my nose was mega itchy, so I must have had morphine somewhere down the line.  Anti-sickness and anti-itching pills were administered and 20 minutes later I felt much better.  Hooray for not eating the meatball dinner.  My backup chocolate and jelly worms would came in handy.

I bummed out on the bed lottery, the only one on the ward without a TV and a dodgy bendy light with a broken switch.  It was also closest to the toilets and right next to the nurses desk. The snoring, coughing, painful moans, old man shouting, toilet visitors and general chit chat was never going to let me sleep.  My phone had died just before I'd gone into surgery so I had no music at all.  I was left with my earphones so I stuffed them in my ears anyway, ate chocolate and jelly worms, did puzzles and drank Horlicks at 3am until I finally got to sleep, 4 sweet hours of it.

The pain is minimal unless I move.  I don't visibly bruise much but they are beginning to come out over my hips, outer, inner and backs of my thighs, under my boobs, my belly, and my boobs themselves with some uncomfortable swelling at the ends of my dog ears, but generally things went very well and my boobs are looking fuller and more even.  I can't wait to meet my new nipples next week! It's going to be bizarre!

Saturday, 19 June 2010

79. Save our BRCA Support Group - BRCA Umbrella

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I have a numb bottom and back ache. Been sat here all day long putting some serious legwork (more like brain and finger work) into raising funds to help save our precious online BRCA Support Group, BRCA Umbrella. Ning are closing the free 5000 member option with their social network and forcing a monthly fee on us. We can reduce to 150 members and far less function for the network for free but this is not an option. There are over 650 Members.


What is BRCA Umbrella? An online support group and community for those discovering and dealing with their hereditary cancer risk. I posted this to our BRCA Umbrella Facebook Page and Group:

"Save BRCA Umbrella now. Donate less than a cup of coffee or bar of chocolate. Its safe, secure, its via PayPal. Go without one treat to help our members who face their genetic lifetime risk of cancer (upto 85% risk). We are 1 in 1000 and we need each other. Few and far between but forced to seek sanctity in a place where others know just what its like to face difficult life choices, having a family or not, breast and ovary removal, screening etc. Our future is in your hands. Donate now. Want to sponsor us? Contact us for more details."


I have been contacting potential clients to advertise with us to help generate revenue whilst offering our Members relevant ad links to companies offering services or products they need, such as Mastectomy Bra or Lingerie Companies in the first email wave.

Fingers crossed we get it sorted soon. 




Sponsor us through advertising. If you have Cancer related services, products etc, you can advertise here or through BRCA Umbrella.

OUR STATS:

This blog site has had over 6,500 hits in 15 months. That's over 440 hits a day.

BRCA Umbrella has had almost 30,000 visits, 186,910 Page Views and an average of 6.5 Page Views per visit. BRCA Umbrella visitor stats average at 1,875 visits per month, 61 visits per day.

So, a lot of activity and therefore a thriving network, an alive network of people needing each other and so, in order to keep that place safe, I ask for donations from you. Just give up one small treat, a bar of chocolate or cup of coffee and donate now.


DONATE NOW! Visit the Chip In page to find our more and DONATE NOW!! Visit BRCA Umbrella Donation Page

Tuesday, 27 October 2009

71. OkeyDokey Ovaries

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Just a quick report to say that I my ovary screening (by transvaginal ultrasound or TVU) from a few weeks ago was confirmed by letter today as 'NORMAL'.

Phew..

And then the blood test arrived so now I have to go get jabbed again and the cycle continues.

Damned BRCA gene!

Saturday, 23 May 2009

62. My Race for Life

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It's here..tomorrow..Race for Life fundraising 5k for Cancer Research UK. I've raised over £600 so far. Tomorrow will be hard last time it reduced me to tears seeing all those women doing something in memory of people who have died horrible deaths from cancer. This time I am not alone - there will be 10 of us with a long list of In Memory Ofs pinned to our backs. As a group I hope we raise some awareness about hereditary cancer and about BRCA Umbrella the support and social network I set up back in February.

I am excited to finally meet with Lisa, Susanne, Flo, Rian, Michelle and Elaine. I am proud of what we are doing and that I am not alone. I feel better for knowing that I shared my journey through all these hard, life altering decisions about surgery, feelings and life with these women. (Karen, Rhonda, Karen and Amy - I wish you were joining us!! xx)

So, to double check my packing, get some fuel, start my journey to Birmingham.

It's going to be a long day. I have to drive 4 hours in total and tomorrow I have to do my Race for Life..9 weeks post surgery. Whew!

Thank you to everyone who has sponsored me, your messages, your kindness. Thank you for caring about me and about my cause.

Time to go..time to leave :D

Thursday, 9 April 2009

54. And the results are...(drum roll please)...

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My breast tissue dissection and examination after full surgical removal was...



Clear - Normal - No pre-cancerous or cancerous cells detected.


It is official - I cut completely healthy organs from my body.

Hoorah!

Breast Cancer and I had a race and I ran so bloody fast it didn't touch me! I win!

When so many find out too late about their genetic destiny, their BRCA mutation. I made a choice when I found out, my choice was to eliminate my high risk and to undego preventative surgery in order to live a longer life. My breasts are made from other parts of me but they are still me and I can live with my scars comfortably.

I now have a 2% chance of breast cancer - NOT an 85% chance.

Surgery was worth it. My perseverence, my peristence, my determination..my survival instinct drove me onwards through fear and uncertainty and into the unknown.

I won the race against my high risk of breast cancer - I gambled my life on an operating theatre table against the odds of getting breast cancer.

My surgeon helped me prolong my life - he has restored a sense of normality for me, released me from anxiety, from fear, from worry. All that wondering before, fear of pain, fear of disfigurement, stuff deeply troubling me..I weighed it up and it was just so simple. Surgery.

My future has returned.

Friday, 23 January 2009

35. Friday blip out - thats blip not blimp!

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Definately not a blimp out on my favourite foodstuffs - just a mental meltdown. It went all quiet on here for a wee while - been either busy, feeling ill or crying in the past 5 days. Hard work but a lot has happened.

Friday - emotion overload!! Tears, tears and more tears and talking for hours on end. First I spoke to the genetics counsellor after a merry-go-round of calls and getting lost in the new automated voice recognition answering service at Derriford Hospital - OMG!

NHS thingy "Say the name of the person or department you would like to speak to"

Me "Genetics Department"

NHS thingy "I heard 'Gavin Hartmen' - is that right?"

Me "No"

NHS thingy "Say the name of the person or department you would like to speak to"

Me "Genetics Department"

NHS thingy "I heard 'Gavin Hartmen' - is that right?"

Me "No you dumbass - operator"

NHS thingy "sorry, I did not understand, please repeat"

Me "That's because you are a machine goddamn it!!"

NHS thingy "sorry, I did not understand, please repeat or say Operator to be put through to the Operator"

Me "Operator"

Operator "Derriford Switchboard"

Me "Genetics Department please."

Genetics Department "This mailbox is full. Please try later."

Great!! A little internet research reveals that the genetics department number is wrong - even switchboard don't know it! Rubbish!! If I was a time waster I could have some mindless fun just screwing up the automation system for a laugh..

Me "Deafasa Post"

NHS thingy "I heard 'Deaf as a Post' is that right?"

Me "Yes you dumbass!!"

Blimey!!

I did finally speak to my genetics counsellor after speaking to the rudest woman at the MacMillan centre. I was just looking for information about MRIs and explained that I couldn't get hold of Genetics. I tried to explain to her that I just wanted to speak to someone because I didn't know who I should be speaking to. She repeatedly talked over me, non-stop and prevented me from explaining. I reluctantly bit my tongue and got of the phone by basically saying "W H A T E V E R !!" in a polite way, "Yep. Okay. Thanks (for nothing)." Honestly, she was crap! Definately in the wrong line of work. Good job I'm not phoning for emotional support about a dying family member about cancer, but then she wouldn't have known that would she..she didn't let me explain WHAT I was looking for!! Trout!

Upon finally having a sensible conversation with the genetics counsellor I covered a few questions that I had about my upcoming surgery and MRIs.

Q. Will I have an MRI scan before I have my surgery or after? Apparently neither!! I am due for my annual mammogram in the next month or so and I explained that I am feeling anxious that I am not having one. I also explained that if I am having major surgery, would it not make sense to screen me before the surgery in case they find that I am already harbouring breast cancer? She agreed but said that it probably wasn't scheduled and that there is no MRI screening options for breasts at present, although they are fighting to get this for at least people like me. She is going to write to the head radiographer and ask as I am particularly anxious and would like a clean bill of health in the breast department.

When stories like this are posted - its no wonder I am questioning. The news seems to be tracking my life story at the moment! Damn it!

http://uk.news.yahoo.com/5/20090128/twl-tests-pose-extra-cancer-risk-3fd0ae9.html

Q. This link connects to my next question - is there MRI screening for my mother - aged 55 who has BRCA1 (obviously) and is not having preventative breast surgery? I explained that my mum currently,although positive for BRCA1, had no screening programme other than mammogram once every 3 years and never spoken to anyone from the NHS about her gene mutation since finding out. On enquiring (after our chats) she had been told that she was too old (over 50) and that MRI breast screening had no funding so wasn't an option! This means mammogram only and the link above shows the catch 22 situation faced by BRCA+ women.

The genetics counsellor nurse is always calm - she is lovely, softly spoken and sure of her words. I felt better for venting my frustrations. She was very worried that my mother appears to have been left out of the BRCA care regime (if there is such a thing!) and we discussed the need for a standard information pack or phone numbers - although everyone is different, everyone needs to look at all the options - not some of them. It is this that has caused me to stall, go back ten paces, go forward again.

So it is all in hand - she is finding out about everything - my mum's care routine, MRI screening and arranging a date for my next counsel meeting with her to discuss embryo freezing/screening.

I cried a lot more that day - about other worries, out came the past box in my head and my heart and a lot of talking with hubby commenced that evening on our way to stay with friends in Southampton. I can only say that I looked less than appealing and more like a frog than my usual self upon arrival. I explained, just in case they thought I had come down with some awful lurgy or had a pepper spray incident with the police on the way there!!

The rest of the weekend was great - social, fun and then I felt ill..and then better and now back to normal. Back on track - I think!

Time to go and get some milk - before Chris gets back. It will be cuppa and hug time!

Hooray!

Tuesday, 13 January 2009

32. The BRCA gene free babe is born! Happy Birthday!

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At last..she has arrived! The first British BRCA gene screened baby is born!! The baby of hope for childless BRCA+ couples.

See full article here -> http://www.dailymail.co.uk/health/article-1110244/Britains-cancer-free-designer-baby-born-screened-deadly-gene.html

Happy Birthday to you!! Welcome to the world.

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