Friday, 23 January 2009

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!!"


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!

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!


Monday, 19 January 2009

34. The future is firmer

I woke early and put on my gorgeous new red cord coat (I love it!!) and teal scarf..all positive and vibrant. I had clothes on too by the way - in case you were wondering for a moment there. I arrived at the doctors surgery at 8.30am ready for my 8.40am appointment..which was actually meant to be 8.20am!! WHAT?! Bugger..I even wrote it on my calendar straight after booking it - 8.40am. I even checked this when I came home. Anway..the receptionist said not to worry because the lady behind me had now gone in early so it was fine..but I did worry, I must have screwed up the whole day for my poor doctor. Arse.

I apologised to him profusely - Christmas and New Year had gone between booking and arriving and I was all over the shop during that time. It helps that he is an young, attractive man because otherwise I would be a bit fed up with myself for being late when I thought I was early. Instead I enjoyed the view and chatted openly about what was coming up and my dismay at finding out that my mother has slipped through the BRCA+ care net. She is only getting screened every 3 years and hasn't talked to anyone since finding out about her own DNA results. They have just left her behind. I am livid and I tell Dr Harris about this. He gave me copies of my letters to send to her doctor and get her back into some good care routine. I am gobsmacked that mum is left to fight her way back into the system!

When I've expressed my concerns about that, we talk about the letter he'd received from my breast surgeon, Mr Drabble about my 're-referral'. This means that I can now actually book the pencilled in date planned for 30th March 2009 for my surgery which was previously outside of the 13 week deadline the government have set for the NHS. C R A Z Y ! ! !

I guess most people just get sick and get dealt with. For people like me, who have a genetic condition and need to plan to have surgery..everything is delayed and nothing is solid or in place until 13 weeks before. Basically, I stressed how much I hate hospitals to my surgeon, told him I would rather have it done when I know my husband will be around to look after me while I convalesce. With his being a teacher, he has little time off and can only get 3 days to look after me...when I need at least 2-3 weeks immediately after. So we are 'planning' to have my surgery done around easter school holidays when Chris will be home. This meant that in October, March was too far away and was outside of the 13 week deadline!! So..(take a deep breath)...they write a letter to my doctor telling him to write to me to get me to book an appointment with them so that I can go back to Dr Drabble and book my surgery date in....!!! How stupid is that?

Dr Harris shared my opinion..but all said and done, he was onboard with the plan which is a result quite frankly. The NHS normally deal with people who are sick..not deal with people who will probably get sick eventually and need major surgery to prevent them doing so. Its strange, but because I am not sick, I feel like I am inconveniencing everyone around me and its planning it to fit in with them and not just for me. If I was poorly with cancer, everyone would just reach out and deal with it but this is planned surgery - not the norm. The NHS doesn't allow for people like me in their rules and regulations but the wonderful staff are bending them to accommodate me. That is lovely.

Oh...AND we talked about fertility and the recent news report. He looked a little edgy about it, telling me it was fairly new but that it was definately something to look into. He had referred me to Dr Attacheny (or something like that) who is the guy I spoke to over Christmas. Lovely on the phone and I am quite excited about meeting him in the flesh. I liked Dr Frappel but he was clinical (lol) and his secretary kinda sucked at her job!!

Ok..epic writeup over. Back with some more soon..keep you posted x

Thursday, 15 January 2009

33. Breast cancer symptoms - what do they actually look like?


This is so stupid. I can't quite believe this dawned on me today and that it is probably partly denial that I haven't really looked into it until now. Those who have experienced breast cancer first hand will know what breast cancer actually looks or feels like, some may not. Finding a breast lump is every woman's nightmare but what does a lump actually look or feel like? I found a lump (more like a hardened area under the skin) at 27 but it was inside my breast tissue to the side (armpit side). Thankfully it was nothing and hopefully it will stay that way but today's thought has led me to delve into the wonderful Internet to find out some information about real visual images of breast cancer symptoms.

Why am I talking about this when I am so close to getting rid of my own 'original' boobs? Well, probably for you, maybe all this might save just one person and that's worth the effort. I stumbled upon one particular image that shocked the living crap out of me. I think the photo I found was of a woman living in a third world country where breast awareness and screening are probably at a minimum. Women lucky enough to be in a wealthy country (erm..might have to revise that bit considering the global economy right now!) have breast screening available to them and doctors who are in the know.

From here on I do not wish to offend or distress anyone in my post today but this is more of an 'ugly truth exposure blog entry' and in doing so I admit my own ignorance of how bad breast cancer can actually get and what symptoms actually look like for real - not the pretty leaflet pictures you get telling you to look for this or that.

Q. Did you know that the majority of breast lumps found (approx 80% of them) are from non-cancerous causes? This is great news but something most of us are not aware of.

Q. Did you know that men can get breast cancer? Male breast cancer

Q. How many types of breast cancer do you know about?

Ductal Carcinoma in Situ (DCIS)
Infiltrating Ductal Carcinoma (IDC)
Infiltrating Lobular Carcinoma (ILC)
Lobular Carcinoma in Situ (LCIS)

Rare cases of breast cancer are:

Inflammatory Breast Cancer
Medullary Carcinoma
Metaplastic Carcinoma
Mucinous Carcinoma
Paget's Disease
Papillary Carcinoma
Phyllodes Tumours
Tubular Carcinoma

Q. Do you know what you are looking for when you are checking for breast abnormalities such as; 'puckering' 'orange peel' 'inverted nipple' 'breast lump' 'nipple discharge' 'indentation' 'retraction of the nipple'?

WARNING - the following link will show you images what breast cancer symptoms can look like.. hang on a minute..

just one more WARNING!! before you click on the link..

At the bottom of the linked page there is a further link to 'Advanced Stages' which show very explicit images of advanced breast cancer so please read warning before clicking.

Real photos of Breast Cancer symptoms

So get breast aware and check regularly, monthly, straight after your period. Get to know them and get breast familiar.

Tuesday, 13 January 2009

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

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 ->

Happy Birthday to you!! Welcome to the world.

31. Fresh as a daisy

..almost. Its amazing what a bath can do for you.

Its also amazing what support can do for you. Thank you to all of you who have passed comment and offered kind words in the last 24 hours - its lovely to know you are out there. You are the people who will help me reach my surgery mentally in one piece. As predicted though, 24 hours has passed and I don't feel like I'm possessed by the hormone devil anymore!

Phew..lets get back to jolly.

Not to go too far off subject, thought I'd mention that I have been posting to Facebook groups about the BRCA+ parents with children approaching 18 subject. For those with a Facebook account, follow these links - those without one, sign up its free and there is a wealth of support and information hiding in the social networking site.

Will post again on Friday afternoon after my eeeeeek 8.40am appointment at the docs.

Take care y'all


Oh happy Tuesdaaaaay...oh happy Tuesdaaay..

Monday, 12 January 2009

30. The Monday pit

I'm feeling a little low today. Every passing month reminds me that I have functioning ovaries and today I hate them. They punch me from the inside to remind me - they shout really loud at me! Pain, nausea, tired, crippling twinges, grumpy miserable cow. Whilst I can't wait to be free of the negative emotional grip they hold over me on a monthly basis, I am glad they appear to look healthy and okay for now. This morning the BBC news was talking about screening embryos for unborn babies with autism and throwing the issue of screening embryos into the limelight again. I wanted to get up and get on with me day today, yet here I am...blogging about embryos and children again..( see blog entries 23. Freezing eggs and 27. Spin, spin, spin my brain..gently down the stream)

I think I just want to sit in front of the doctor this Friday and ask him what the hell I do now about my ovaries and embryos and surgery. I have missed my slot to just have them out because I am looking at the embryo screening options. If the embryo freezing is not free to us (link will give you NHS costs), we can't even comprehend borrowing the money for it, it will cripple us financially. Sometimes I think it would be easier for someone to turn around and tell me that I just can't have any children rather than this emotional and controversial dilemma I face in looking at trying to have day...after my surgery is over.

I looked at my counter today..its below 80 days now. Shit! Mild panic but its ok though, I am starting to plan out the things I need for hospital, the things I need done before I go in and lose the use of my arms for a while. Will I need a nightie? I don't own any and I will have stitches that need dressing and sorting out both front and back so what the hell will I wear?? Split front AND back gown? Front and back bum flash on the way to the loo - excellent!! I hope I get a room on my that likely? I have no idea.

One thing I do know is that I feel low today..its Monday, I feel weepy, stupid and vulnerable. I'll stop there though because I can't beat myself up over nothing - it won't last..I'm used to it and I can't wait for it to be over. No more periods, no more.

My husband will sigh a big relief, I have no idea how he puts up with me.

I loathe negativity - its so destructive.

Make it stop now.

Make it stop.

Wednesday, 7 January 2009

29. Welcome to 2009!

Happy New Year to you!

My news so far this year...

  1. University stuff arrived - avidly studying and applying.
  2. Battle of wills and rights with stepson's mother - stepson won.
  3. Telling Job Centre that I don't need them and their negativity no more - smiling about focus in life!
  4. Great Bird Sadness:
  • Attempting to rescue an oyster catcher with a broken wing near Dawlish Warren - bless put him to sleep.
  • Watching my cat maul to death my favourite bird in the garden - a Goldcrest. I'm livid but thats
Oh..and its very cold!