Sunday, 30 November 2008

10. I woke in the night thinking about the hot blanket!

..about the hot blanket. The what? The hot blanket, just like I said.

What the hell is the 'hot blanket'?

Ok, because I am going to have muscles pulled round from my back, under my armpits (wince now if you like) and through under my empty boob skin to make the new ones. I have to wear a hot blanket to help everything stay alive and happy and keep everything toasty.

Hot blanket is going to be 36 degrees Celsius!! For 48 hours!!

The endurance of this sweaty 48 hours will be one of the toughest parts, now that I am thinking about it. I am gonna sweat my arse off!! I had a vision last night of being completely at the mercy of the nurses, just lying there sweating relentlessly with nurses coming and going with dripping sponges washing me down to keep me cool. That sounds awful, like some Japanese game show.

"She's doing well, into her 24th hour now, only 24 to go. It must be sweltering under there. Imagine being led in the desert under the beating sun, unable to move, in pain, sweating. Will she make it? Tune in tomorrow to find out in another episode of the HOT HOT HOT BLANKET SHOW!"

What the hell am I doing? I am sure it will be fine..I hope it will be fine. I hope I don't get irritable. How will I sleep? I think meditation might be a good way to go. Is there any way I can prepare for this bit? I think I will practice with my beloved wheatbag, my little friend who helps me through evil womb and back pain. I won't need him anymore after the oophorectomy but I am sure that my stepson will take him on to toasty up his feet on cold nights, the perfect bed warming device!

Damn..the hot blanket - I'm quite scared of it..this is such a small part in reality but I have to trust that I will make it through sanely and that I am quite good at dealing with varying temperatures. Although now I am worried that I might suffer with menopausal hot flushes too but that might not be such a bad thing, it might prepare me.

"Everyone cheer, here come the nurses. Its been a long, hot and crazy 48 hours but she's there, she's made it through. It's coming off. Remove the hot blanket! WOOOHOOOOOOOO!!"

I think I will order ice cream to arrive on the 48th hour - ice cream please, with extra ice!

9. Telling my stepson

Whilst sat in the conservatory trying to work out how to put the yellow Lego crane back together without the manual, Chris, my stepson and I had a chat about me and my op. I think at 10 years old he needs to know what is happening and that he doesn't have anything immediate to worry about, I am not about to die. It was going fine but then we mentioned the 'C' word and his little face went pale. I quickly reassured him that I do not 'have' cancer but that the chance of me getting it in my life were very high, much higher than the average person and that is why I am choosing surgery. I explained that if I just spent my life going to hospital for regular screenings, I could still get cancer and I would have to have operations then but it would be much worse so I may as well have them now while I am fit and healthy.

He looked so worried. We talked about it some more and later in the day I showed him the CGI video as it seemed to be the easiest way to explain what would happen to me and that I am going to hurt - a lot - and that I will need to be cared for. I think it made more sense to him.

One of my biggest issues with telling him is exposing my vulnerability to his wretched mother. I explained that she may not be one of the best people to talk to about it if he was worried as she wouldn't piss on me if I was on fire. He agreed and told me that he thinks she hates me more than his Dad because he thinks she is worried that he will love me more than he loves her, which is very probably true. Her insecurities cause him and us no end of problems and I am sure that when she hears the news she will skip around her house for weeks on end hoping that I die on the operating table. Do I care? Actually, no. If she causes any problems around then, we are stronger than she can ever imagine, untouchable. Anyway, that is just a small drop in the ocean of things at the moment.

I've just realised that I am going to have to get very busy in the garden in spring so that everything is sorted before I am incapacitated for a while! Chris will have to be on grass cutting and pond duty. Doesn't look like I will be able to get my gravelled patio area sorted this year unless some miracle gardening team whisk in and do it all for me - which is highly unlikely, unfortunately! Ho hum..plans for 2010 are forming already. Another delayed year.

And who is going to paint the house too? Bugger. Gonna have to rope in some family to help out I think. I can't have another damp winter, my house will fall down. I had so much planned. I wish that Chris gets some answers about his knees and he can live a normal, active life without pain. I wish with all my heart.

Friday, 28 November 2008

8. Weird thoughts

Ok, so I started thinking about the surgeon. He is human after all.

What if he has a bad nights sleep on the Sunday before my op? What if he drinks too much wine and feels a bit rough? Do surgeons drink lots of wine?

He looks like a nice, proud man. Neat and tidy with warm hands. I started to think about him a lot. He is going to be responsible for giving me new 'boobs' and chop up parts of my body. He is human and he has good and bad days too. I don't want to put pressure on him to do his best job ever but a secret part of me wants him to. I want to be his very best work! I am willing to show people the results, to share with others who are where I am today. Maybe he thinks that each operation he does is going to be his best ever? What the hell goes through his mind before an operation?

Should I ask him to join me for a beer? I could pick his brains, tell him to be a good boy over the weekend, take it easy, sleep well.. Is this me trying to control the situation as much as possible? sad.

So, should I? He could kill me or he could save my life, the least he could do is join me for a beer.

Crazy..but there you go. What colour socks will he wear? He looks like a funny sock kind of guy. Maybe I should buy him some so he can wear them on the day of the operation.

Yeah - I'll buy him some socks.

7. It's all arranged!

I'm not sure how it happened. One minute I remember talking about the nitty gritty of nipples and scars, the next we were pencilling a date in his diary..planning my date with the surgeon for breast reconstruction.

Monday 30th March 2008

I told him that I am concerned about being smaller than I am now and although he is not keen on implants, I told him that I think being smaller will psychologically scar me for life. He agreed that it was important that he knew how I felt about that and would do his best to get the best shape possible with my back fat and muscle but would have some 'emergency' implants on stand by, just in case. I felt much better about that. I mean if I'm going to do this I have to feel happy about the end result. I felt quite selfish in my request to stay the same size as this man is trying to save my life and I trust him, I have to - if I actually had cancer and there was no way of having breasts again, I would just deal with the consequences in exchange for life. This is different, I have a say - I have a choice and I feel grateful just to be free of the high risk and feel cheeky asking for perfection.

Before today I felt very anxious with not knowing when to 'go ahead'. I guess there is never going to be a right time to chop your boobs off is there, may as well just get on with it. My biggest worry is about recovery. I am worried about how long it will take me to recover because I am still out of work and things are very, very difficult right now. I imagined being in a safe warm place in my life when I would plan all of this when Chris would be home over the summer and I could relax and get well, but its just not happening like that at all.

My Dad is living in another country, my Mum is miles away in Bristol, my Brother never calls me anyway, we are 40 minutes from my lovely in-laws and nearest family, I have few local friends since moving and my wonderful husband is suffering with serious knee pain and on crutches at the moment, drugged up with painkillers most of the time. I feel quite lonely but I am sure that people will be there when I need them, when it's critical.

On top of everything I have a cold. The last time I had a cold was 6 years ago and it was MASSIVE and I had it for a month... Reckon I went through about 389 toilet rolls, 5 layers of nose skin and a drugstore of Sudafed. The last time I had a cold, I was grieving heavily and I was wafer thin after losing Paul. Run down big time. Here I am the pit.

I need a health plan. I am sure that it will keep me positive in all areas of life - I need it, I can almost hear my body begging me for it..for exercise, for fresh air. I am listening but not acting right now, there is so much on my mind that I can't even think about it right now..and Christmas is coming, and I am not sleeping good at all.

I just feel a bit confused today. It's real today. What if I get a job? How do I tell them that I have major surgery planned and need to have maybe a couple of months off work? It worries me and I don't want to jeopardise getting a job by having surgery. This is my BIGGEST concern at the moment - work.

I guess I will have to just deal with that as and when it happens.

OMG! 4 months..16 weeks (ish)

Tuesday, 25 November 2008

6. Christmas and tears

Had a conversation with Mum last night about my stepsons Christmas present. I wish she could be more involved in his life but its complicated. I felt terrible after I got off the phone, I realised that I felt sad for her. Tears just flowed and I felt so empty. My decision about surgery has effected everyone around me and I try to remember that it is about me and not about what they wished for in life. I have to do this for me. Grandchildren make old age worth getting old for I guess, little people to tell bad jokes to, love and squander money and time on. My brother has chosen not to have children too as his partner has MS and there's a risk of passing on the BRCA1 gene for him too. My parent's hearts must be broken.

My Mum has spent some time telling me about the latest newsflash about how magical science is and how embryos can be screened for genetic disorders now. This is the hardest part of knowing what I know - helping my parents to accept my decisions and that they will not have grandchildren.

Christmas is not fun for me. Christmas is about family and fun and children. It just makes me sad and I need to deal with that one day and do something good with Christmas time. When all the surgery is behind me, I will change Christmas.

Friday, 21 November 2008

5. Oophorectomy: I'll have my menopause now please, pronto!

I got a letter from my gynaecologist and obstetrician consultant, inviting me to call and book my operation for the oophorectomy. I am having both ovaries and fallopian tubes removed.(video link for info)

It was kind of a reality hit - this is it, if I do this it means never ever having my own children. But that's fine, I'm okay with that now, I am at peace and know that I have made my choice. No regrets.

It also means - T H E . M E N O P A U S choice!! OMG!!

What will that mean for me? NO MORE PERIODS!!!

All together now.....


On the symptoms side..who knows, I might not flinch an eyelash but I might sweat my arse off at night or I might grow a beard (although the surgeon laughed when I said this and he said I wouldn't). It also means I have to super healthy and get out exercising more. Early menopause means potential bone loss earlier than the average woman in her fifties after menopause and also a higher risk of heart attack. I have to eat good (thankfully I cook from scratch all the time anyway so no shock to the system there) and get lots of sunshine (more holidays then - not a problem, apart from affording them)!!

Sorted! Do you think the NHS will pay for my shopping bill and future holidays in the sun then? Not likely!!

I have listed five website links below that explain about early menopause, osteoporosis and Vitamin D and Calcium.

Early Menopause - Info
Early Menopause - Risks
Eat Well - Vitamin D
Eat Well - Calcium

Basically, good diet and exercise will help things out but fragility in old age is probably likely, but that might mean I spend some time in a groovy racing stripes granny buggy but hey..that's better than death by cancer so I'm all lets go go go!!

If I can get hold of the darn secretary to sort it all out...ho hum. I guess a date will come soon. I think I will ask Santa for lots of bed sheets for the potential night sweats, a sack of soya beans and a two week break in the Maldives! Nice...

4. Should I have children or not?


To have children or not to have children? That is the question. I may ramble about this but isn’t the whole point in life to recreate?

This has been one of the biggest driving factors in finding out about the family gene. I have been through so many feelings on this subject I cannot fully explain, but the outcome has been based on many years deliberating facts and feelings.

In my early 20s I was full of enthusiasm and energy for having a family but I was with a man who didn't want children, under any circumstances. Not something you discuss on a first date but it was too late and I was madly in love with him. Most women figure the panic in a man about having kids is going to change as they mature, but its usually a no. 'Kids' were always a fighting point with Paul and I, and it broke my heart. I tried for almost 7 years to bring him round but I went through some very rough patches in the process, details which I won't go into, and I was hurt very deeply.

Paul was killed in a road accident 2 months after we got engaged but the honesty of the situation is that I had started to work out how to leave him so that I could have a family. I'm not sure too many people know that, but it is true. It didn't mean I loved him any less, just that my instinct to have a family was so strong that I would leave to find it. I remember telling him it was a baby or kittens. He chose kittens. It healed a gap for a while but I still wanted out but didn't know how to leave, it was all very complicated.

After his death, I started to question whether I was meant to have any kids at all. I was still worried about the gene thing and I pushed it hard with my doctors. Without a viable man in my life, I had lots of mental time to consider 'what if I have genetic cancer?'. In my time with Paul, my mum had a small breast lump found on a routine mammogram, it was cancer. Thankfully she had a lumpectomy, was very strong and just took it on board. I am not sure I ever saw her down about it, maybe it never sank in or she was just covering up. She'd lost two sisters to cancer and two aunties, her own mother and a niece had also had breast cancer. Maybe my mum is just very brave and used to heavy emotional stuff (unfortunately) and held it together for us lot.

When I met Chris about 6 months after I lost Paul, people probably wondered what the hell I was doing. I wasn't ready to love another man but I let him love me and I explained that I would love him as much as I could, but he understood. He watched me grieve. He was there through some of the hardest stuff that comes after the dust settles. In the early months I explained about the children panic I had. I was desperate for kids by now at 30 years old, but it felt more like a panic than a real option. I found out Chris had had a vasectomy some 5 years earlier and my heart sank, I was back to square one. I looked into how much it would cost to reverse it, what the success rates were etc. Not much chance. He didn't want more children anyway but wished he'd had his son with me and not his cruel ex. He'd been viciously scorned. Only days after his vasectomy operation around Christmas time he was kicked out of his home by his ex, separated from his 2 year old son. She let him have the op but knew she didn't want to be with him and waited until after it had happened before she destroyed his life.

As things unravelled between us I started to wonder if I would ever have children and questioned why I wanted them anyway, why was I continuously halted in my efforts for a family. Maybe it was fate. I think this is the turning point for me. I accepted that whatever I did, it was going to be very difficult. After two difficult years of grieving, fighting with Chris's ex for access to his son and moving home twice I sat up one day and realised that I had stopped wanting. I focused on my future health again, now that life was becoming more settled and structured.

I found out that my mum could have a genetic predictive test for a breast cancer gene on the NHS and I asked her if she would. I explained that it was so I could make a final decision about my choices of having children and so I could make choices about my future health. If I had the gene too, I wasn't having children of my own but if I didn't have it, I could look at the possibility, although a complicated one.

It took over 2 years to get her results. We were promised 12 months, but they had sent it to the wrong lab who took far longer return results. They knew that I was worried about my age and my youth to have children was slipping away yet the situation was dragged out to stressful lengths. After the first year, I chased the results. I chased, and chased, and chased. I was in limbo. Those 2 years were torturous for me. Finally, when we found out that mum had the BRCA1 gene and I got upset more than she did because I didn't want her to have the gene and I didn't want to have it either.

I was almost at my decision about whether I could have children or not by now. There was a 50/50 chance that I had the BRCA1 gene too and I had spent so much time thinking about it I accepted that I probably had it too and in the 3 years it took from getting mum tested to finding out my own results, I made a decision before I knew my own results. I figured it would make the news less of a hit. Pessimistic? Probably, but I have always been a planner, always two steps ahead. A problem solver. I prepared myself.

So, I gave up wanting children, I realised I had no interest in babies, in fact they were just smelly, vomiting, tiring and expensive things that I couldn't even afford in my life. Society is full of kids who take take take, who shoot each other, who drink and abuse. As I looked harder at reality, I found more reasons not to have kids. I finally listened to my body and it told me that it had had enough wondering, wishing, wanting. It was time to stop, it was tired. I weighed up my feelings about potentially passing on a cancer gene and realised I couldn't do that to a child, not with the knowledge I have. They wouldn't be able to do anything about finding out until they were 18 and I would spend even more time wondering, waiting. I thought about the potential guilt and sorrow it would bring. What if my children wanted kids? What if they felt the same as me about passing it on? What if I broke their hearts too? What if they resented me for it?

I was at a point where whatever the result, I was probably not able to have children of my own.

And then recently I found out. I was a BRCA1 carrier. I felt relief. It was over yet just beginning, and I was ready for it.

3. Surgery - the options


Well, I thought I should probably post what surgery is available to me. For the feint hearted, there is no need to worry - no real blood was spilled in the making of these videos – all CGI! It's probably easier to show you these than eventually explain what will happen to my body.

Video of Oophorectomy

Video of Free Flap Breast Reconstruction

2. Family history and BRCA1

So what made me investigate a cancer gene? My family history of breast cancer (and other cancers) which is pretty heavy-duty:

If you have one or two people in your family who have had cancer, it is highly unlikely to be a type of genetic cancer. Here is a link for Cancer Research that will give you excellent information if you are at all worried about this subject.

Cancer Research

So looking at my family history, it is hard to understand why a doctor would tell me I had little to worry about, but that's why I kept pushing to find out - for me.

What is BRCA1? Its known as the BReast CAncer and ovarian cancer gene. The BRCA part of my DNA is supposed to help repair damaged DNA but the BRCA genes are mutated and they put me at a risk of upto 85% chance of breast cancer and upto 60% chance of ovarian cancer development in my lifetime (to the age of 70). There is also BRCA2 which still carries a high lifetime risk of both ovarian and breast cancer but about 20% lower for both. It is known that the BRCA1 gene can trigger cancer in much younger woman than general sporadic breast cancer which tends to effect post menopausal women. With BRCA1 and aged 35 I feel like a ticking time bomb. It is not curable but loads of research is being done. Its only been identified since 1994 (see link below) but was a major discovery and a very imporatant one. At the moment though, there is no way of tweaking my DNA to repair the broken bits so I have to choose my path from here. Screening or Surgery?

My thoughts often play with the fact that I am a mutant, but only an 'identified' mutant. As my husband points out - I am not alone, there are many people walking around with genetic mutations its just that don't know about it. Not to worry you reader, but it is true but very unlikely. Genetic cancer is rare but I guess the knowledge of my gene mutation, although I wouldn't wish it and the worry it carries with it on anyone, it gives me options and hope.

Links - Cancer Research and Cancer Journal

1. Introducing me

I'm a woman who has lived with a nagging question in her head for 20 years. At only 35 years old that’s a lot of worry. There's been a question that persistently knocked on the door of my rational brain, telling me to pursue the answer. What is the question?

Is there hereditary cancer in my family?

At the age of 16 I vividly remember sitting in front of my GP raising my concerns of the very evident history of breast cancer in my family (7 women that I can name). I remember he almost laughed at me when I suggested it might be hereditary and told me that the chances of me having genetic cancer were so small I shouldn't worry about it. I was there to go on the pill and I knew even then that the pill increased the chances of breast cancer and I was concerned. Granted, in 1989 there was little information available about genetic cancer but I knew it was still possible - so many woman had been through or died from breast cancer in my family, it just couldn't be a 'coincidence'.

So here I am today, in the knowledge that I have the BRCA1 gene; the breast and ovarian cancer gene. It took me 13 years to get into the 'cancer care system' of the NHS. Initially they told me I was too young and couldn't be screened until I was at least 30. At 27 I found a lump and that made them sit up and take notice. Thankfully it was benign. It’s taken a further 9 years to go through screening, counselling, appointments, my mother's DNA testing, my mother's results, my blood samples and genetic testing to find out my own results.

In August this year, I found out. I sat next to my husband Chris in the MacMillan cancer unit, Derriford Hospital and the lady told me that she was sorry to say that the results were positive for BRCA1. I didn't flinch. I felt relief, my gut instinct has been right all this time. I was probably relieved because all the energy I had wasted worrying and planning and deciding 'just in case' hadn't been in vain after all. I think I would have fallen off my chair or burst into hysterical tears if she'd have said that I DIDN'T have the gene.

And now? Now I have choices to make.