The Fault in Our Stars

So Saturday was a sliding doors experience, but not in the way I’d envisaged.
Instead I found myself taking the boys to their usual Saturday morning swimming lesson, and chatting to another Mum there about school, and moving into the next stage of our parenting journeys (her youngest is Toby’s age, so she’s a little ahead of me).  Something that I know wouldn’t have happened if I’d had a newborn baby in a sling.

Then at lunch time I dropped Chris at work, and on my way back home had an even bigger sliding doors moment, when I stopped at a red light at a pedestrian crossing and saw one a guy I recognised from The Infusion Bay (where I have my IVIg).  I sat opposite him at my last treatment.  He crossed in front of my car- in his electric wheelchair, while I waited, behind the wheel of my car, with full use of my limbs.
I got home and the boys started to play this really involved game of make believe that mostly involved spreading their toys across the entire living room floor to make “the sea” (also making it pretty much impossible to cross the room without potentially breaking a bone) so I picked up one of my library books…
Don’t worry, I’m not going to give away any spoilers.  But I’m not kidding when I say, that aside from breaking to feed/water/clean my children and tuck them into their beds, I could not tear my eyes away from the pages of this thing until I finished it that evening.  I laughed, and cried and would probably have turned back to the first page and read it right through immediately after finishing had I not vowed to return it to the library because someone else had reserved it.
A book about cancer, when you have just lost someone to cancer, and have other people you love battling cancer, may not sound like an ideal read, but this book is different.  It’s not even a book about cancer.  It’s a book about people, and they just so happen to have cancer.  And that is what makes it different.  It is also what gave me my biggest ‘sliding doors’ moment of the day.
I wasn’t sure how I felt about the outcome of my molar pregnancy, or it’s due date, right up until I felt it on Saturday and here it is…an emotion you’d probably never expect to hear in relation to miscarriage: relieved.
Molar pregnancy is a form of gestational trophoblastic tumour, you don’t need to understand the first two words to appreciate the impact of the last one.
The letter I received in November, informing me of my histology results told me there was a 1 in 10 chance that remaining tissue in my uterus would become cancerous and potentially spread to other parts of my body, requiring chemotherapy.  1 in 10 is of course still 9 in 10 it wouldn’t, and that’s what I kept telling myself.  But that same day I took a photo of my hair, my ridiculously unruly, curly-but-not-in-a-good-way hair that I normally hate, just in case I was about to lose it.
But I didn’t, did I?  There was no remaining tissue, my HCG levels fell steadily, I didn’t need any follow up treatment, my hair remains long and a source of constant annoyance.
I’ve always known how lucky that makes me, but on Saturday, after reading The Fault in our Stars, I actually really felt it.
There are a lot of brilliant quotes I could take from that book, but “The world is not a wish-granting factory” has to be my absolute favourite.  I am thinking of getting it tattooed somewhere on myself as a reminder, so that when I  start to feel like “It’s not fair” I can look at it and tell myself to STFU.
Life owes us nothing.  We owe it to ourselves to make the most of the life we get. (My words, not John Green’s!)
Advertisements

The Due Date

Tomorrow is D-Day.  The due date of the baby we were having, but aren’t anymore.
The early scan we had at 7 weeks put us back a little, giving us a due date of 17th May, but by dates our baby would have been due on the 10th May- tomorrow.
Of course, in reality s/he would have come whenever s/he wanted, but if previous pregnancies are anything to go by (and I’m aware they’re not a guarantee!) then I tend to pop my babies out in the 38th week, so chances are we would have a brand new baby already.
I’m not sure how I feel about that, to be honest.  Nor am I sure how I’m supposed to feel about that, or what to do about it, even if I could figure out what my feelings are on it all.
Which makes this a somewhat pointless blog post.  But I just wanted to acknowledge the significance of tomorrow, and the fact that it actually happened in the first place.
In August I peed on a stick, and found out I was pregnant…the same day I was diagnosed with Guillain-Barre Syndrome.  And here’s the proof, sat atop a copy of Juno magazine, which Chris had brought me to read in the hospital:

 

In September, there was an actual baby inside of me, with a heart beat of around 148bpm:
And then I was scanned again at what should have been 10 weeks and there wasn’t.
Later of course we found out that the pregnancy had been ‘doomed’ from the start, as it was a Molar Pregnancy, meaning there was an extra set of chromosomes and our baby was incompatible with life.
Does that make the whole thing better, or worse?  Should it make me feel better?  Or worse?  I don’t know.  I am still sending urine samples to Sheffield Centre for Trophoblastic Disease to monitor my HCG levels and ensure there isn’t any molar tissue left in my uterus, so I have to say I’m inclined to say that the Molar aspect is scant comfort if any.
This isn’t my first rodeo of course, having had two previous miscarriages, but I have never been in this position before, as with each of those, I was already (heavily) pregnant again by the time the “Would have been due dates” rolled around.
You never forget them though.  It’s so weird.  My first pregnancy I worked out I would have been due on October 21st 2009…but it wasn’t to be.  By the time October came though, I was waddling around with an almost full-term baby inside me, who turned out to be Toby.  So although I remember recognising the day quietly to myself, it wasn’t with sadness as I was focused on the baby I was carrying, whose life wouldn’t have been possible if I hadn’t miscarried.
Likewise, my 3rd pregnancy had a due date of 20th July 2011, although as it was a twin pregnancy, it likely would have been moved forward anyway.  Again, it wasn’t to be, although by the time the summer came, I was pregnant with Rudy and again, felt thankful for how things had worked out.
This time, the due-date is almost upon me, and not only am I not pregnant for a change, but I’m not even planning to be.  Which makes this a very different situation to the other two, and probably explains my whirlwind of thoughts and emotions on the issue.
I haven’t really reached out to talk to anyone about my experiences, if I’m honest (well, apart from the handful of you reading this I guess!) but if anyone out there stumbles across this and does want some support then The Miscarriage Association is a good place to try.  And for those affected by Molar Pregnancy, you can click here to visit the Molar Pregnancy UK site.
As for me, I have a feeling that tomorrow will be a bit of a Sliding Doors experience (you know, that 90’s film with Gwyneth Paltrow?) as I go about my normal day-to-day life with Chris and the boys, acutely aware of what might have been instead.

Filing Feelings

We finally got round to doing some ‘filing’ in our house recently.  That makes it sound very glam and like I was wearing a pencil skirt and following an index system at the time, when in fact I was wearing my pyjamas, and tossing old bills at the dog who would then rip them into tiny pieces (who needs a fancy shredder?!)
Yes in reality, filing is just when the desk starts to bow under the weight of unopened bank statements (I know, I know, won’t someone think of the trees?! Blame Chris, not me, I bank online!) and appointment cards and nursery newsletters and the such, so that we finally have to do something about it.
Most of the stuff goes in the bin, and then anything worth keeping gets put in one of four box files. It’s all very dull and necessary.  I actually found an unopened letter from our pet insurer which was dated the end of November, telling me that the price of Fudge’s insurance was about to double.  That would probably have been good to know 4 months ago…*sigh* In my defence, a lot of shit was going down in November, and I spent a week of it in hospital, and even managed to get myself diagnosed with two rare conditions.  So perusing our renewal quote on the dog insurance wasn’t really high on my agenda.
There’s always shit left over, at the end of the ‘filing’, that has nowhere to go. Often times it ends up in the bin also but there’s some stuff it’s hard to be ruthless over…
Scan photos, from a pregnancy that didn’t work out…
 
Pathway Plans, and minutes of meetings from when I was in care as a teenager…
 
An instruction booklet for a calculator my Dad gave me, that still has workings out scribbled on it in both his and my Mum’s handwriting…
 
A Bliss DVD about resuscitation that I am supposed to have watched as part of my job- you know, the job I haven’t been to in over 7 months…
What am I supposed to do with this shit?  There is no box file for “Things that make me feel weird” (an oversight on our part, it seems). In the end they sat in a pile on the table for a couple of days until I couldn’t bear looking at them anymore and they got shoved back where they came from- the deepest darkest recesses of the desk (and my mind).
And then just a few days after our filing extravaganza this arrived in the post:
A letter, about the whooping cough vaccine, being offered to women who are more than 28 weeks pregnant. Yes, it would appear my GP surgery still think I am pregnant. 33 weeks pregnant to be precise. This is despite the fact that they have received my discharge summary from St Mary’s Hospital, where I had my miscarriage medically managed last October, and correspondence from Sheffield Centre for Trophoblastic Disease who are still testing my urine every fortnight following my Molar diagnosis.
There was no doubt where this letter was going- straight in the bin.
If only filing my feelings were as easy.

 

Molar Pregnancy and Me

Welcome to the second instalment in the “and me” series!  Featuring myself and my range of rare medical conditions.  Ok, I actually have just the two CIDP and Molar Pregnancy.
Well, I don’t have Molar Pregnancy, there is no having of Molar Pregnancy. But I am undergoing follow up for a Molar Pregnancy, and I know a lot of people don’t really understand what that actually means so here I am, blogging about it.
Chris and I decided to add to our family last summer, sure I’d been having a few strange little twitches in my leg but we obviously had no idea of what was about to happen, otherwise we wouldn’t have been contemplating trying for another baby.
When I say try, that’s not really the correct wording. We’re fortunate to be extremely fertile. The question is always whether the pregnancy will actually stick.
I discovered I was pregnant on August 29th, the same day I was diagnosed with having Guillain Barre Syndrome, and had all the usual doubts and fears, but an early private scan showed the teeny tiny beginnings of a baby, i.e. a blob measuring a week behind but with a clear strong heartbeat.
I’ve never had a miscarriage that followed a positive scan so I figured we were free and clear and concentrated on getting better i.e. re-learning to walk etc.
Unfortunately in this case I had definitely counted my chickens before they’d hatched. Literally. A scan at what would have been 10 weeks showed an embryo sans heartbeat. There was to be no third chicken.
Since my body is not always eager to admit it’s failings and reluctant to let go of doomed pregnancies I had to have my miscarriage medically induced.
You’d think that would be the worst of it, right? So did I. Until 3 weeks later after celebrating Toby’s birthday at Legoland, we came home to a huge thick envelope in the mail.
The histology results from the miscarriage were back and the findings were consistent with what is known as a Partial Hydatidiform Mole.
Fortunately I’d heard of the condition before, through work, otherwise I’d have been even more shocked and bewildered than I actually was.
In simple terms it means that at conception, two sperm fertilised the same egg. This should never happen, as eggs are supposed to form a protective barrier preventing a second sperm from gaining entry. So there was a glitch with my egg, and two lucky sperm got in. Unfortunately this meant that right from the beginning the pregnancy was not viable, and by viable I mean, could never have resulted in a live healthy baby at the end of it.
From the start there was an extra set of chromosomes- 69 instead of 46 (known as a triploidy). That extra genetic material causes the pregnancy to progress abnormally with the placenta outgrowing the baby. Partial molar pregnancy is a type of Gestational Trophoblastic Tumour.  Usually the condition is diagnosed at scan and the recommended treatment is an ERPC, which is surgical removal of all the pregnancy tissue. There is a risk that if any material is left behind it can embed in the uterus and develop into what is known as an invasive mole. Untreated this can lead to Choriocarcinoma.
Obviously I wasn’t diagnosed as having had a Partial Molar until weeks after my medically managed miscarriage, and not having had an ERPC at the time, meant I was at slightly increased risk of there having been some pregnancy tissue left behind.  The idea of there being this random genetic material burrowing into my uterus and possibly becoming cancerous was pretty terrifying and I definitely struggled with the diagnosis more than I did with being told I had Guillain Barre, or being told I had miscarried, or even a couple of weeks later having my GBS diagnosis changed to one of CIDP. The molar was the hardest to swallow because it seemed so fucking unfair.
All we’d wanted was another child, how had it gone so wrong that I was now being sent pamphlets about Chemotherapy?!
Fortunately, all my stress and worry and research into whether or not I would lose my hair on Methotrexate proved to be unfounded. I have been monitored via regular urine and blood samples (I send a test tube of pee to Sheffield through the post every fortnight!) in order to check that my HCG levels are reducing.  In simple terms HCG is the “Pregnancy Hormone”, so were it increasing, or even just sticking fast, then it might indicate that there was some tumour remaining and I would need further treatment. My levels started low and have continued to fall. My most recent level was 0.02. There really isn’t much more NOT PREGNANT IN ANY WAY SHAPE OR FORM! you can get!
So it’s all been pretty straightforward and next month (as of the 12th of April) I will reach the 6 Month Post Miscarriage marker and no longer need follow-up. Although were I ever to get pregnant again (regardless of at what point in the future, or the outcome of the pregnancy) I would need follow up afterwards, as it is always possible that the pregnancy hormone can “reactivate” the mole. Which sounds so sci-fi, I know.
I will finally be able to get life insurance (something I have been turned down for, due to there having been an increased chance of a cancer diagnosis these past 5 months) which will be a relief.
It also means that as of next month we will be given the “all clear” to try again, should we want to.
1 in 600 pregnancies is a Molar Pregnancy. Having already had one the risk increases to 1 in 100. Which is still pretty good odds of everything being perfectly fine, and in fact most women do go on to have successful  pregnancies and healthy babies following a molar diagnosis.
Of course most women do not also have a diagnosis of another rare and under-researched condition, like CIDP.  And that, is a whole other post in itself.

Happy Monday!

Some days I feel like I’m in my own twisted version of The Truman Show. You know, where everything you touch turns to shit and you can’t help but wonder if there’s some underlying conspiracy to drive you to the brink of insanity?
Today is not one of those days. Today is the opposite of one of those days.
First up, Chris went for his first ever driving lesson. That probably sounds like no big deal. Except that it’s a huge super massive deal.
When we discovered I was pregnant with Toby (on the 13th March 2009) I told him “You need to learn to drive before this baby is born!” and again when I found out I was pregnant with Rudy on the 12th February 2011, I said the same thing. Those embryos are now 4 and 2 years old respectively and until this morning Chris had yet to actually get behind the wheel!
After his lesson (which was apparently a great success, and certainly the Audi appeared intact on his return) I had to get bloods done as part of my molar pregnancy follow up. I figured it was going to be a huge pain in the arse as the specialist centre I’m under send all the specimen bottles and request forms etc direct to me and if there’s one thing us HCP’s hate, it’s patients’ who have more of a clue what’s going on than we do 😉 But in fact I got called through right on time, presented my blood bottle and paperwork and it was done and dusted within a couple of minutes. In fact, because I am driving again these days, the whole experience from leaving my house to walking back through the front door took exactly 20 minutes. There was even a parking space in the GP surgery car park! There is never a parking space in the GP surgery car park! (That was my first clue toward the reverse Truman show effect).
Then our lovely friends Emma and Ben came to collect the boys to take them on an exciting trip to the Sealife Centre and for a sleepover! Faced with the prospect of 24 hours child free in which to do whatever we pleased (so…that’ll be 24 hours of uninterrupted sleep then 😉 ) whilst our boys had a whale of a time (excuse the pun!) I really didn’t see how the day could get much better.
Then a letter from my consultant dropped through the letterbox.
It begins:
Well that got my attention. This guy could definitely write novels, he’s certainly got that “hook them from the first line then reel them in” quality.
He goes on to say that given how negatively I reacted to my recent trial of steroids he believes he is justified in allowing me 5-6 months of IVIG treatment before considering other options.
That means not starting prednisolone this week and waiting 2 months to see how I react to it. It means that for the first half of 2014 my CIDP will be managed and I will be able to lead some semblance of a ‘normal’ life and take a break from hospital admissions and trialling medications and their side effects. It is, in short, very good news. Which, as a family, we haven’t had much of recently.
So since today appears to be going so well, and since our children are safe and happy at Mermaid Cottage I think the only right and proper thing to do is to go out and celebrate…just as soon as I finish this blog post…and take a long hot bubble bath…and have a disco nap…

Funny Hospital Moments

I know tomorrow is going to be hard and horrible. And I know there’ll be no getting away from that fact, physically or emotionally. And that’s ok. I will go through it and come out the other side.

But for tonight I wanted to distract myself, just a little, by thinking of some things that have happened this week that have made me smile or given me a chuckle. And I don’t mean the moment I realised I could walk again. Moments like that deserve a post of their own I reckon.

I mean silly stuff that cheered me up even when things were looking pretty bleak.

1. people repeatedly asking me if I’d “mind” a male nurse or support worker helping me. What is with that question?! I don’t give a flying monkeys what gender the person is who helps me off the toilet. Send in Johnny Depp or fucking Santa Claus if you want! I’m not looking to date the guy, I just need them to help me up!

(On a serious note I understand its about privacy and dignity but it’s a slippery slope when a HCP’s gender is seen as an “issue”. What about male midwives? Or females working in urology? Who decides what’s appropriate? Where do you draw the line?)

2. As an inexperienced student nurse tried desperately to take my pulse manually, I tried to ease her nerves by joking “Don’t worry, I’ve definitely got one” Unfortunately it passed her by as sweating and deadly serious she simply said: “Oh, I know”.

3. This scenario, every single night in the middle of the night:

Me: Totally horizontal and sound asleep.

Support worker/Student nurse in an exagerated whisper: “DO YOU MIND IF I TAKE YOUR BLOOD PRESSURE?!”

Me: “Urngh” (Stick arm out of covers)

BP: 82/46

Support worker: “Your blood pressure is a bit low, you need to drink more…” Pushing a jug of water towards me (Bearing in mind that this is usually at 2am or 6am!)

Or, in the case of the aforementioned student nurse: “Erm…erm…” (Runs away)

I swear this happens every night! But I’m 28 FFS! And until summer I was running regularly. Why on earth would I need a systolic BP over 100 when I am completely asleep?!

After my 1st dose of IVIG my BP was 140/75 and I thought my head was going to blow off!

4. Whilst showering me in the hospital bathroom Chris said in a sad voice “It’s not even sexy. You’re just too ill”. Haha. I think he can rest assured that you’ve got to be a pretty sick puppy to find shaving your newly paralysed girlfriend’s legs sexy in any way. Sweet? Yes. Loving? Definitely. Sexy? Absolutely not.

5. Ordering a tuna salad for lunch 3 days in a row and never getting it. Tuna is like gold dust in this place. On one of the occasions I was asked if there was anything else I fancied. I asked if they had anything similar like maybe a cheese salad or a tuna sandwich? “No, but we’ve got a jacket potato with cheesy beans” ?!?!

6. A young pharmacy technician insisting he had to lock my Tesco Folic Acid 400mcg away in my drugs locker

7. The moment one of the sisters on AMU popped her head around the curtains and found Emma kneeling above me on the bed waxing my eyebrows and thought she was a doctor. This makes me laugh just thinking about it.

8. Chris’ confession that at home the boys had been wearing mis-matched pyjamas “but they’ve had a bath every night!” God I love him so much. Both that he knew it would drive me crazy, and the fact that imagining Rudy running around in his Batman pyjama top and Green Eggs and Ham pyjama bottoms does in fact drive me crazy, even with everything that is going on is hilarious.