35. Friday blip out - thats blip not blimp!

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!

23. Freezing eggs

As I have said before, I feel like my life timing has conspired against me every step of the way in my desire to have children without hideous complication. It is now something I just don't feel I can be bothered with in life now.. I gave in to the fight on this one, but maybe only postponed for another day. What my mother made me realise on the phone last night is that there is still a chance that I might be able to have children, that the recent news about screening embryos (whether you agree with it or not) is an option for me.

Maybe I can freeze my eggs before I have them chopped out?

Has this been offered to me? No. Guess what I am doing now - finding out. If this is an option and it hasn't been mentioned or offered to me during my counselling in preparation for surgery, is this from lack of knowledge by the people leading me through all this or is it just not available? If I had cancer now, before I went through chemo, this would be offered to me.

I think I panicked yesterday because this is final..what I am doing is final - no ovaries - no children. I will keep you posted on this and I will find out. Imagine if I could find a happy, non-cancer worry place in my future where I had the energy to try. Chris says he would try if I wanted to. This makes the whole deal a little less 'final'.

If someone is strong and says they don't want something, shouldn't you throw all the options available to them to see if they bite? If they don't then they are sure. Because I entered the system with fear for my future children and had convinced myself that I NEVER want children because I can't deal with the consequences, they just accepted it, they never challenged me about it once. Am I that convincing? Maybe I am angry at myself but if I hadn't been so strong I would have faltered on the way, been desperate..this has been my coping strategy. Look what science has done..it has introduced a mutated gene free chink of hope. I am not ashamed to turn about face on this - I don't want to make a mistake. I want to be free of worry and then I want to see if I really don't want children for the right reasons.


Honestly, some days I wonder if it would just be easier to get cancer and just deal with it. Those who have cancer wish they had had the knowledge I do. I'm not sure that this is any fence to hang over admiring the view and wishing it was yours and not your neighbours. I think we both worry we could die, both struggle to get through days, both face operations, drugs, children, life.

I admit that the knowledge I have gives me a small upper hand over cancer but it is not a definite that I will get it - even with my gene mutation. There is still a 15% chance that I won't yet I make decisions based on the odds which brings a lot of emotional dilemmas, which is why I am sharing my story with you. What my personal journey has revealed is that although there is knowledge, the journey has only been walked by the few with the knowledge and the system to support those who do and who will again, is protracted and convoluted.

Maybe this blog of mine will help others in their own BRCA+ journey and even if it is just one person, all this typing and thinking and sharing will have been worth it.

22. Take a deep breath

..and relax. I am trying.

I bare resemblance to a frog this morning. My eyes are puffy and sore, tired but not green or slimy. After a difficult day yesterday I spent an hour in the bath and felt very, very alone. I realised that everyone I have met that is BRCA+ is not like me. Not one person.

I called my mum who is not one for having deep conversations and would rather not 'get morbid' but I think I made her see how much I needed to talk to her. I asked about her cancer, which just happened - lump found, cut it out, radiation - sorted. This is bizarre but thats the way she deals with things. She tells me I have too much knowledge and that too much knowledge is dangerous. I agree to an extent, but then too much knowledge will cure cancer one day - science will break it down to each little cell, atom - pull it apart and test is to destruction..with masses of knowledge. Knowledge is power. What I am doing is knowing my enemy so I can fight it. Too much knowledge has also made me slightly OCD (yes, I am slightly damaged mentally..) because I am a hand washer. I admit to the world (well, any readers out there) that I have phobias that are control based but it is mild and I keep it in check. Living all these years with the unknown have made me try and control my world a little and I know it is all connected to the BRCA journey, grieving, moving away from everyone I love..and lots of other things..all mixed up in a cauldron of worry. And today's recipe will make a lovely condition called OCD...taddaaaaa!! Magic.

So yesterday was tough. I cried for about 2 hours in total and I am paying for it today. What came out of my day of torment was the thought about the next generation of BRCA+s being born or who have already been born out there. They are blessed with childhood right now, ignorant in their wishes for Christmas, their birthdays, their tree climbing (do children still do this??) - innocent children. They don't know yet but at 18 years old they can find out, if they want to. In reality they will probably not realise the impact this knowledge could have on their lives. Teenage life, partying, having fun, growing up, life will get in the way and it will be blotted out as a future worry for most.

One day they will meet someone special..that's when it will become a reality.

Will their parents let them just carry on without a care? Will they pressure them to investigate? There is so much connected with the knowledge..the cursed knowledge.

This whole embryo screening thing has stirred things up and I need a new blog poll.

21. The link of hope - embryo screening and the BRCA+ reality

Warning!! Controversial blog post going on here. I have been a realist on this whole thing, this BRCA+ thing.

If you are here because you have just found out about your own BRCA+ condition then I hope this post won't frighten you too much but it also lists the things that BRCA+ person may have to consider. For those lucky enough to have had children before knowing about their gene mutation the news today is fantastic, it gives hope for your children and their choices if they too are BRCA+.

It took me years to go through all these stages, decisions, thoughts. I had to list them all. This news story has rocked my foundations. I was steady, heading down my chosen path with unwavering thoughts.. and then this big monster jumped out in front of me. What do I do..what do I do?!! Think, thats what..think. So I blogged and thought and this is the result. It may seem quite angry but this blog is part of my self therapy, helping me vent, helping me cope. I hope it is of some use to my readers too.

This morning's BBC News report came a couple of years too late for me. Some of you (like my parents) might think this news is fantastic. I have spent so long conditioning myself to the prospect of living without children that this news just sent me into a spin. I just have to remember that it wasn't possible for me when I was ready, when I wanted a family - neither was my life ready.

Here's the BBC News link http://news.bbc.co.uk/1/hi/health/7792318.stm

I've spent a good chunk of today thinking about this. There have been times that I've welled up with tears, tried to talk to Chris, tried to understand why I feel so swung off kilter by it. So I put it into perspective:

The couple have screened their embryos because the FATHER is BRCA1+, not the mother. She is 27 years old and probably has the drive and desire to have babies. I did when I was 27..and years before that. The FATHER has the BRCA1 gene - what does this mean? It means that he doesn't have the same dilemmas faced by a woman with BRCA1. He doesn't have breasts and he doesn't have ovaries. Would he be having children if time was running out for him and he had the same life threatening risk and options which would take years to sort out? Can't be answered that one I'm afraid.

This is the black and white, consolidated reality in finding out about BRCA gene mutations :-

Got your Family history of breast cancer confirmed - investigate BRCA gene mutation..... ->

Age 30 - worried about family history. The NHS will not screen a woman until she is at least 30 years old. Hopefully things will change in the next few years as they learn more about genetic breast cancer. As they realise BRCA1 and BRCA2 can trigger cancer in much younger women, they may screen more women at a younger age. For me, I was 27 because I shouted loud but really it is not an option until you are 30 with a big family history. At 30 you have about 5 years of prime egg producing time left before things start to trail off towards menopause land. Stay calm - there are people out there who understand, who will talk and who have information for you. www.breastcancergenetics.co.uk is the site for information if you aren't getting any or can't find any and they run a helpline service open 24/7 365 days a year. Just pick up the phone and call them.

Age 32 - you are BRCA+. It takes 1-2 years to go through counselling in preparation for genetic testing results and to get DNA tested and results returned. Now you are 32 and you are BRCA+ but do you have a partner? Do you need to find one? How many years do you have to sort out the right man with so much else to worry about now that you have found out you are BRCA+? You need to think now..about you and what you want, how you are going to deal with this and what are you going to do next. There are options to consider:

A. Do you just want to investigate IVF and embryo screening programme? This will need counselling and probably a 1-2 year process to get to pregnancy if successful. Beyond children, you still have the gene and you still need to make decisions about your life.

B. Do you put faith into action and just go for raw baby making? There's a 50/50 chance of passing on the gene to the baby, whether boy or girl. The screening option will give your children options in the future if they are BRCA+.

C. Do you want surgery to remove your breasts and remove your breast cancer risk? If you want breast removal surgery it will take about 1 year to go through various counselling sessions to make sure that you are able to deal with this. For me its taken 2 years to get through the NHS system to the point of surgery date from the initial counselling after deciding to get tested for BRCA1.

D. Do you want surgery to remove your ovaries, go into menopause early and not have children? I was counselled heavily on this as it is a major decision. It is something I spent many years thinking about before I knew my my results. This is not to be taken lightly and you need to search the very bottom of your soul to decide this.

E. Do you ignore everything and just carry on with your life. Some people choose this but those people aren't here reading this and they wouldn't have taken the genetic test in the first place so E really isn't an option.

I hope that my BRCA+ sisters (and brothers) out there can push the awareness of this condition out there. It is not some random rare condition - it can be bred, increased - it needs to be faced head on. The impact on the NHS and people needing screening could increase as more people investigate their family history and demand testing. What if they do? The NHS need funding to support this cause.

I have decided to research as many personal BRCA+ blogs as possible and gather them together in one place. Sharing mine and others' stories will give those seeking support and information something extra, personal stuff that can't be handed out in a leaflet. This is a very personal condition, its not black and white at all. It involves many choices and can feel like someone put the fast forward button on your life. There are so many facets to consider and for some it will be overwhelming. I found the loneliness of my situation and worries quite hard and there was no-one out there to share it with or to learn from. I had to hunt long and hard to find people to share this with and it is only now at the point where I have made all my decisions that I have found them.

Thank you for Facebook and the opportunity it has given me to touch base with others who have BRCA+ gene mutations. I have made friends with some fantastic ladies. Together we will support each other. We are the foundations of the support system that is currently so disjointed in the NHS today. The next generation will benefit from the choices made by the women who face this today. We are the seeds.

I choose life.
I will not be broken.
I'm rock 'ard me.

I am here now, living, choosing and I am not going to die of breast or ovarian cancer, not if I can help it!

Not on your nelly.

Ok...blog rant over...and out.