Saturday 13 October 2012

The Four Week Wait

So, right now I'm in the middle (I think) of the four week wait for my test results from the geneticist. (I talked in detail about these tests here a year ago - here's the link - if you want to know what's going on).

This waiting period has been much harder than I expected. I mean, I knew it wouldn't be fun, but I didn't expect that I would want to bury myself under a pile of sand quite as much as I do. (Out of interest, does anybody else experience this? When I am anxious or sad, I have a really strong physical urge to get underneath something. A table or a duvet or a piano or something. I'm not kidding, and it kind of freaks me out. Generally I just aim for the duvet but this time I kind of want something heavier). (Please don't hate me for admitting that). I guess what I'm saying is that life does not feel very much like a fluffy bunny at the moment. In fact, I would say it is something of a bunny free zone.

Here's where it all went wrong. (Well, it all went wrong the week before, but here's where it went wrong on the day I actually went to have my blood taken). The tests were in Oxford, in a hospital we haven't been to since we got my first set of genetic tests five years ago, and last time we went in a back entrance and really only saw one room. This time, we used a different carpark and went in the main entrance and once we had taken one step inside that hospital it was clear that it is the kind of place where nothing good ever happens.

Giveaway number one. You know how hospitals like to make a bit of extra money these days by selling retail space? I've been inside a fair number of hospitals, and it seems the shopping area usually has a cafe (mediocre) another cafe (truly awful) a gift shop (magazines that nobody wants to read, and sad dusty teddy bears with dead little eyes) and oh, another cafe, even worse than the first two. That's not what this hospital had. Oh no. Next to the obligatory cafe, directly opposite the entrance, was a shop that only sold one thing: wigs. Uh huh. The shop that expects the most customers from the people who frequent this hospital is the I can't help noticing your cancer treatment took away your hair shop.  

 Also. You know how hospitals have those big direction boards with how to get to all the different departments? Well, all the departments in this hospital were the 'oh no, you have to go there' departments. Nobody was getting their hip replaced. Nobody was having a knee operation. Absolutely nobody was having a baby. It was all sad, scared people, walking around in pairs holding tightly to each other's hands. It was really starkly obvious that this was the kind of place where all the patients need to bring their spouses to their appointments for support.  There was a strange, strained atmosphere so yeah, I guess we fit right in.

Eventually we trekked across the silent corridors of misery, got to see the geneticist, and she was super-nice. Really, really super-nice. She said she hardly sees any second-generation testees*, and she'd already been in touch with my mother's geneticist (in Australia - I was suitably impressed) so she knew exactly what gene deletion she was looking for. I think that because I've already had some conversations about the biology behind all this with my mother and cousins, I knew more than most of her patients do when they come for a first test, so she kind of skated quickly over all the basic information and got into the nitty gritty of some of the treatment options. I was glad to find her really knowledgeable, but I'm not really sure that I was ready to go into all the depth that we did - it has been a really big thing for me, deciding that I do want to know about what's going on in my body, whether it's going to try to kill me at some point in the future, and I wasn't really ready to think about 'hmmm, Total Abdominal Hysterectomy with Bilateral Salpingo-Oophorectomy or just oophorectomy? Mastectomy with no breast reconstruction or mastectomy with reconstruction using stomach fat [that's when she offered me the bonus tummy tuck] or reconstruction using back fat or reconstruction using synthetics?' I have no idea. I don't know. I don't know I don't know I don't know. I don't know. I don't even know if I have the gene yet, so I'm not ready to think about this stuff, but of course now I'm thinking about it all the time.

Then - because of her fascination with my ovaries - she was asking 'so, are you planning to have any children?' and I just laughed, in that wow, this isn't funny at all, why am I laughing**? kind of way and said 'ummmmm, well, we've already sat in this room once before' and she said 'yes, I can see that from your notes' and then I laughed hysterically again and told her we had two adopted children because of our initial trip to the geneticist, five years ago, but that we really had no idea what we might do next (if anything) in terms of more children and she says 'well, if you were to get your ovaries removed...' and frankly, who cares what someone says at the end of a sentence that starts like that? Have I mentioned lately that I'm thirty-three? I'm thirty-three. I do not feel ready to think about getting my ovaries removed. Or my breasts.

And by the way, sometimes I would be tempted to type br3asts instead of breasts, because I want to keep people who are searching for naughty stuff away from my blog. But this time, I'm leaving it there because the horrible men who are trawling the internet looking for naked pictures? Well, I hope they find this post instead of what they were really looking for. Cruising the interwebz for a cheap thrill, boys? Well, I HOPE YOU ARE HAVING FUN READING ABOUT OOPHORECTOMIES.

Also. I know that some people reading this have actually had cancer, and all of us know people who have died because of it. I am very aware that what I'm facing is not actually a diagnosis of anything except for risk. I'm not trying to be a drama queen about all of this. I know that I must sound to some of you like the person who has only been trying to get pregnant for six months and now thinks that they totally get infertility. I realise that I do sound a bit uber-dramatic about this wait, this anxiety, and I guess that's why I took an unintentional break for the last few weeks, waiting for all of this to feel a bit less raw and panicked before I vomited it out here. And actually, I didn't intend to even vomit this much, seeing as how this is supposed to be an adoption blog, but my fingers just seem to keep typing of their own accord. Bad fingers. Bad, bad fingers.

And yeah, I may feel pretty stupid if I get the letter on Monday and it says Negative for the gene mutation, no heightened cancer risk. But I'm pretty sure I can deal with feeling stupid. I can think of worse things than having to type 'guess what, it turns out I'm A-OK' Sometimes I picture myself getting the letter with the results (the one that is supposed to come within four weeks of the appointment) and opening it up and it says NEGATIVE! and then I jump for joy and drink some champagne and then I start to think seriously about saving for retirement, because hey, I might need to do that after all.  But twenty seconds later I wish I hadn't had those thoughts. After all,if I do get good news, I'm sure I'll figure out what to do without having planned the minutiae, and I don't want to have to put those fantasies away. I don't need them. After all, I'm okay with happy surprises.

Bad news, on the other hand - I do have a plan for that. Over the last week or so, I've been collecting a 'bag of treats' that I'm only allowed to open once I've got my letter. I know it's shallow, and trivial, but I wanted to have something shallow and trivial to look forward to during a week that might be really hard (and a month that has already been really hard).  The bag itself is bright pink***, and so far inside it I have:

and to be honest, I feel a little better just thinking about it. I'm also waiting on a mindless girly DVD I ordered from Amazon, and I am ABSOLUTELY taking suggestions for other things that should go inside. What would you put in a bag of treats? (Don't say a puppy, even though that is an awesome idea). The criteria are: entertaining, mindless, fun, not too expensive, able to be enjoyed immediately. And not a puppy.

So anyway, that's me right now. Believe me, I know how boring this is. I will start writing about adoption again soon, I promise, but right now this is eating all of my mind-grapes. I'm so sorry that I owe so many people emails, and that I haven't commented on anything at all lately. I think what I'm really trying to say is:

Normal service will resume shortly. 

*hee hee. That sounds like testes. I was going to find another word, but then I thought this post might as well have some male body parts along with all the female ones. 

**I've been doing a ton of this lately.I was filling in my sister in law on everything that has happened over the last few weeks and I was telling her "and then we had to take Blue to hospital and that was weeks ago and we are all still sick and now I'm waiting to find out whether I'm going get gene linked cancer HA HA HA HA HA!" and a part of me was looking on and thinking 'wow, it's really time to stop laughing Claudia' but it was that or head for the sandpit so, well, what can you do? 

***annoyingly, as far as I can tell, this organisation only exists in the US which kinda stinks for me. 


  1. I thought I had a bunch to say, but I don't. Thinking of you. Proud of you for finding out. And, stomach fat boobs with a free tummy tuck - duh, that is a NO brainer.

  2. Well dear, I'm sitting here in bed, lights out, headphones plugged in, watching lipoprotein lectures online on my laptop when I decided to check my reader and saw this post. And I do NOT want to be that person who tries to say I know what you're going through because I really don't. But I do have a tiny idea of it, maybe a shred. The genetics in my family are pretty darn bad for heart disease and stroke despite all of us being non-smokers, non-diabetic, exercising fools. I had all the tests run I could and found out that yep, I carry it all (that we can test for at this point anyway). Turns out it the folks in my family hadn't been so darn healthy otherwise this stuff would have likely killed them much earlier, so I keep doing what they did in that regard--running like a fool, vegetarian living, not smoking (duh!), etc. But I also now take several medications because they are available to me, and they weren't available in the same way to my other family members. And yes, I completely realize taking medications is not comparable to surgery for prevention. I definitely realize that. But there's a reason I am watching lipoprotein lectures online at night, and still setting my alarm for 4:00 am to run ten miles...there's a reason I became a lipidologist and counsel patients every day about this's because I'm living it too.

    Knowledge is scary--super scary--but it is powerful too. I so hope you get wonderful news, but I also know that if you do not, you will just start putting one foot in front of the other in a different direction (albeit a scary one, again, not diminishing that one iota) but you will do it because you just will. Relentless forward progress, it's all you can do.

    Thinking of you.

  3. Feeling the way you do sounds reasonable to me! Do you like fancy cheese? How about some rich hot chocolate? A gift card to a bakery? I really hope it becomes a celebration bag. Thinking of you, C!

  4. Can you put a tortoise in the bag? Zinashi and I saw tortoises eating salad at the pet store, and it is the most hilarious yet soothing thing you will ever watch in your life. They open their mouths so wide! I'm thinking of getting one for the day Elvie has surgery; I'm pretty sure they'll let me bring it (and some salad, of course) into the surgery waiting room.

    In all seriousness, I am thinking of you and praying that the results are negative. I'm hoping, too, that the answer comes soon; I always think that waiting for news is harder than knowing if it is good or bad.

  5. I totally get it.

    And, MyTwoLines is right. Knowledge is powerful. You're an academic, so you know that - remotely. Just remember, with knowledge comes action. Without knowledge comes total reaction.

    I'm all for action; particularly when one must act in response to GOOD news.


  6. I'd toss some really yummy smelling lotion in that bag. And a note saying 'remember how strong you really are'. Actually, put the note on the fridge instead so you can see it every day of this horrible wait. Praying you get good news ahead of schedule.

  7. GOsh, I can't even imagine! I'll wait to hear what the news is and then, whether you get good or bad news, that bag sounds perfect - maybe I should make one for PMS? :)

    I would always suggest a new bag, nail polish, some pics that DELIGHT me and some washi tape!!!

  8. Thinking of you and hoping one day soon you'll be feeling like a soft warm bunny. In the meantime: I have a primitive skills friend who advised me one day that if you ever need a soup thickener but aren't in a modern kitchen/world you can use rabbit pellets for that. Just add the pellets and simmer.

  9. I'm glad you've vomited this out here. It's a big effing deal. When I was little I used to curl up under end tables.

  10. thinking of you. this is tough stuff. i love your bag of goodies for yourself...what a great and proactive idea. ...sadly, i can only offer the suggestion of more chocolate....or chocolate sauce for the ice cream stash? we all love you out here.

  11. Not a puppy but what about a kitten?? And a really soft, just for you, cuddly blanket. Waiting with you friend....

  12. I started reading your blog around the time you first mentioned needing to do this genetics test - been wondering if you had done it ever since. Will send out a wish & a prayer that your pink bag is opened on a day of celebration. I'd throw in a gift card to a favourite restaurant & plan a night out with your husband.

  13. Just lots and lots of hugs. And a giant tube of premade cookie dough.

  14. I've always admired your boobs. Even more, YOU. Standing by, supporting, praying and thinking of you.

    1. Oh, and in the bag, I think I'd have Red Vines. Maybe it's a US thing, but they are the only candy I like and I get them once a year because they are hard to find. I think I'd want that.

  15. Awww, dang, lady -- what a sucky time. I love your bag of treats. That made me laugh about the celebrity magazines -- I love 'em, but also don't know who most of those people are anymore.

    You are so brave, taking charge of your health and your future like this. I do not envy your situation, though, and in some ways am grateful to have no knowledge of my birth family hanging over my head. However, I can see how as a parent it's important to be around for your kids, so I do often think about getting testing done on myself. Though it scares the crap out of me.

    Wishing you strength!

  16. Holding my breath. Wishing I could hold your hand.

  17. Thinking of you, C! Wish you a lot of strenght!

  18. Claudia, praying so hard that you get a letter on Monday that makes you feel stupid. Will be thinking of you.

  19. Claudia, you've been in my prayers and thoughts. I pray that you can find peace, strength and a deep revelation of God's goodness. ♥

    I had a similar bag once, while waiting for a diagnosis. (It was The Big C, and it was negative.) I recommend a little bottle of Bailey's, really good chocolate, a new scarf, a posh cookbook, earrings, and a shiny new CD.

  20. Money towards a house-cleaning service? Not so much "fun", but might be necessary.

    Praying for you.

  21. Prayers for you! And yes, hope you get to feel stupid real soon.


Over to you!