How O vary Trying

This post was written on Sunday 21st February 2016, three days before my egg harvest.

image

IKEA – the source of all my distress.

Well today’s review on yesterday’s entry is that I was probably a little over dramatic, courtesy of the hormones. It was not a good day; I nearly cried in IKEA because we didn’t get to look at the wallpaper for my redecorated bedroom  To be fair on me, I had been looking forward to it all week, and focusing on it as my reward for making it through another seven days, something positive for myself that I was excited about. But, at the risk of sounding self indulgent, of course it didn’t happen; like first I had to go and get cancer and now I can’t go and look at sodding wallpaper! Fucking typical, why is the world so against me?!?! So yes, it was an overreaction but the thoughts behind the reaction were kind of valid, if not just a little extreme.

I wanted to include the short diary entry from yesterday that I managed to scribble down before I had to stop, overcome with sadness and anger, because although it may be soul-destroyingly embarrassing to read, this is the reality of cancer. And although it may appear like the hormonal mental ramblings of a deranged psychopath – which may be slightly true – this is the reality of an egg harvest. It may be nice to appear all together in my edited posts, and that may portray a stronger, more positive, more inspirational me, but a lot of the time that is not how I feel.

image

Me 

 

My posts paint a snapshot of me; they don’t show the in between parts and so I will do my best to include those wildly over emotional moments where I want to cry, and those lazy moments where I’m not all about living for the day, I’m more just about lying in bed watching Friends and eating chocolate until I am physically disgusted at myself, which believe me takes a hell of a lot of chocolate.

Anyway, thank god I didn’t have a mental breakdown in IKEA because that would have been really quite embarrassing.

Today was better; my dad drove my mum and I up to London with a suitcase packed for five days in the eventuality that we need to stay because of scheduling of scans, bloods, tests and the egg harvest this week. TheNHS clinic in UCLH I usually attend is a satellite clinic, closed on weekends, and so today’s scan was at CGRH, the private clinic where my bloods are tested and I will be having the actual egg harvest done.. This meant I got to test out the swanky private bit which had an intercom, free coffee and all you could ever dream of.

It was actually quite funny when I went in the room for the scan because they told me that today they would decide whether to do the procedure transvaginally (get the eggs by going up my vagina) or transabdominally (get the eggs by going through my abdomen using long needles guided by ultrasound to pierce the skin). My mum and I told them that there was no way on earth they would be getting them by going up my vagina because my ovaries are up by my ribs.

They then appeared to compromise and said they would just be double checking if it was viable to go through my abdomen, to which I replied the same thing. The nurse seemed to sort of nod to appease me but before the conversation could go any further the consultant scanning me walked in, or it was probably more of a frantic run in, with the scattering power and craziness of a twister, I have never seen anyone carry out sprint interval training in such a tiny space. It was hilarious, my mum and I kept sneaking glances at each other and trying to hold in our laughter as a Sonic the Hedgehog with excellent vagina expertise was brought alive in front of us.

image

And what this hedgehog had to do was stay away from my vagina because there was zero chance she was getting any eggs up there. 

Then the whole conversation about which way the eggs would be retrieved started again as she nodded manically at each thing I said, and I relayed the fact that they would not be getting a single thing, egg or otherwise, by going up my vagina. Finally they realised they probably needed to read my notes and I could see the moment at which they realised I had cancer, because the nurse, who was already really lovely, started looking sympathetically at me and then kept saying, “Bless you, bless you darling” for the rest of the appointment. Anyway, we finally got the debate settled and abdominal access was agreed upon, but it still needed to be checked that both ovaries could actually be accessed full stop, whether they were viable.

Normally in all my scans they find the right ovary easily but they have had real difficulty seeing the left. I have needed multiple different people scanning me and have had to lie on my back and on my side in different appointments. Initially, they thought it was being pesky and hiding behind my bowel but they were hoping that it would, as I had more hormone injections and my follicles grew, increase in size and become easier to see. Unfortunately this hasn’t been the case which means two things: firstly, that the left ovary isn’t viable, the problem being that it has slipped down from where it was clipped below my ribs, to behind my uterus which means it isn’t particularly accessible; secondly, that it hasn’t increased in size as dramatically as the right ovary, which is indicative of an absence of eggs that are ready to be harvested.

image

The CSF leak that I burst after my spinal surgery. It originated from the fact my original surgeon nicked my dura, the thin membrane that contains the sac of CSF fluid and the spinal cord. That giant white area is actually the leak – the thin white line at the middle top is where it should be contained. My pelvis is now apparently “swimming” in CSF fluid. My back also now feels like a water bed if you poke it at the bottom – very retro, I know.

That news was shit, I’m not going to lie. It’s a total bummer and it feels any expectations of this harvest are getting lower and lower. It’s hard to be too mad about the fact my damn uterus is blocking the view, even though it feels like just another thing, because the only reason my uterus is there is because of the massive CSF leak I burst post operatively, which in turn was the thing that floated my uterus out of the way of the radiation. And the fact that my uterus was out of the way of the radiation means that I will actually be able to carry children in the future – news that we had to wait to hear in America at our initial consultation (yes, that was a very very nerve wracking appointment). So although things feel like they have worked out for the worst at this moment in time, actually they had previously worked out far more for the best.

Whilst the news was shit, I can say that the way in which the consultant handled the crumby situation was perfect. She was incredibly matter of fact and to the point, and, although it hurt to hear in such pointed and direct words, I appreciated her honesty and candidness. Too many times have I been burnt by the glare from the rosy coloured glasses that one surgeon in particular opted to wear; there is optimism and then there is sheer arrogance in assuming that things will just be okay. This consultant was the perfect combination of hopefulness and  practicality, and had her feet firmly planted in the real world, where everything is not always okay, but where there always remains the need for truthfulness and where keeping one’s fingers crossed never does any harm

In better news, apparently on the right ovary the follicles on which the eggs grow are progressing nicely and the doctor seems fairly happy. To be honest though, I have felt distinctly average about the whole thing since I found out my AMH had dropped so dramatically last week, something I spoke about in a previous post. It just feels a bit lacklustre, like I’m settling for something worse than I was aiming for before, but I guess there really is nothing we can do about that.

My consultant exited in the same flurry as she entered, chucking a load of tissues at me so I could try and de-goo myself and rushing out, manically shaking the door handle to prise the heavy slab of wood that comprises a door in CRGH open. We felt like we had been in a total whirlwind and it took us a moment to work out quite what had happened, confused looks floating in the slightly speechless and stunned quiet between us. Luckily the nurse talked it all through with us again slowly, and allowed me a moment to catch up.

I think CRGH is amazing and I really liked the consultant who scanned me and the nurse, more than wanting to see them again, but perhaps the pace at UCLH  suits me more, probably because I’m a bit dopey at the moment and so I need people to go veeerrryyyyy sslllooooowwlllllyyyyyy wiiittthhh meeee! That’s not saying I don’t love CRGH though, because I most certainly do and I am so grateful to everyone involved for not only securing me funding, but for squeezing me in so last minute, their flexibility, and for being all round so amazing, patient, understanding and caring. I really could go on; basically, I adore UCLH and CRGH.

image

Kua ‘Aina – this place does the best sweet potato fries in the whole wide world.

After that we went to this amazing burger bar where I destroyed as many carbs and high fat foods as I could. It was brilliant and I felt much better about my little eggs, myself and the world in general. I’m not going to be best pleased though if this chemo makes me put on more weight. I do at some point need to start being a little healthier, but for now I just keep saying that the food is good for the baby.

We then walked to Oxford Circus but it took forever because my back pain, which has been getting progressively worse over the last few days unless I’m doped up to my eyeballs, got really quite bad. It was very disappointing because I was really up for doing a bit of shopping and feeling a bit normal again, but even with that disappointment I still felt as though I had accomplished something big. Weeks ago I would never have had the confidence to stray that far from home on foot because of my incontinence, but today I wasn’t stressed. I have definitely noticed an improvement recently with my anxiety levels and although I still visit the toilet more than the average 22 year old non-pregnant lady, I visit a whole lot less than I did before.

image

We came across the world’s most British, most polite anti dumping sign ever made on the walk to Oxford Street.

And the people! I have gained confidence in the sense that I don’t care about being in peoples’ ways. I’m on my crutches and I’m slow; those are two facts I’m very much aware of and very much don’t care about. My existence may irritate people because they have to add five seconds onto their journey times, something that I, from the amount of times people nearly squish themselves trying to squeeze between me and a wall/car/other person, have noticed people find particularly traumatic, but I couldn’t give a flying you-know-what. And I’m happy to be able to say that because before I would have been apologising left, right and centre; I would have been the one dodging and speeding up after the green man disappeared before I had reached the other side despite the rocketing pain. It has taken me a long time to be okay with me being me and not worrying about annoying other pedestrians when I have actually done nothing wrong. Hallelujah, self acceptance has finally happened!

About the Author

tumourhasit@gmail.com

4 Comments

Sharon kajdi

Beth such a brilliant piece of writing love humour & honesty so important for pt to hear truthful info however in this busy rat race of life in 2016 what a shame people did not read your notes ! So glad you now are more confident when going out you should be love the new hair style really suits you beautiful Looking forward to your next blog hope all goes well with next chemo treatment xx

Reply
Allison Semikin

Another truthful post about a difficult moment. IKEA is enough to make anyone cry tbh Beth but I do understand why it was so difficult for you. The picture you have created with your words is so precise that even if I hadn’t been with you at the crgh consult I would have known exactly how it was. Well done my lovely Beth for another brilliant piece of writing. Love you to the moon and back.

Reply
Karin

Just a little truth of a crazy real Swiss woman:
Chocolate does not solve Problems, but an apple doesn`t either .
Keep on fighting and enjoy the right being bitchy. You derserve it 🙂
(Translation from Swiss German , don t take it wrong if it sounds strange in english…:-))

Reply
Pat Harmon

I love that you’re so open and honest about the emotional and physical changes that happen as a result of sarcoma. I love that you’re such a good writer. I love that you have kept your wicked sense of humor and know how to use it. I love your very British “no dumping” sign in the sidebar. AND I love your very glam apricot hairstyle. (Mine is naturally silver at this point in my life, and apricot is much more fun! I got mine cut today too so I’m in a very good mood tonight.) Most importantly, I love that you’re getting more comfortable venturing farther and not giving a sweet Damn if you’re too slow moving for some folks! Hugs, Beth!

Reply

Leave a Reply

Your email address will not be published. Required fields are marked *