Wednesday, December 16, 2015

Thank you NHS. Again.

You know how you should always wear respectable underwear in case you get hit by a bus and people see your pants (or something...), well, yesterday, I failed Rae. She was wearing a once-white-but-now-grey skanky vest when the ambulance turned up, and even that got stripped off her fairly quick.

This year alone, I have so much to thank the NHS for. I had multiple scans during the late stages of pregnancy with Rae, along with the routine midwife care. I had an emergency MRI to check the tumour hadn't come back after some odd symptoms during the pregnancy, and another one after so they could use contrast. I had a planned section delivery for Rae and all the drugs and care that goes with that.

Alfred had immunisations. Rae had three rounds too, and the BCG. And me and Alfred both got flu jabs. Alfred had his two year check up and Rae has regular sessions with a health visitor.

Rae had a full scale blood investigation for several months tracking her dodgy blood cell count. I got a bit of metal stuck in my eye, and ignored it long enough to go rusty, requiring two scraping sessions to fully remove. I've had two bouts of mastitis, requiring a course of antibiotics each. And then yesterday, Rae couldn't breathe, choked, and went grey and floppy.

We called 111 for advice and they sent an ambulance. I know that many people have had bad experiences with the NHS, but I am continually amazed by the service, the logistics, and the people who seem to work endlessly and thanklessly. Within minutes a guy turned up, he said he was an advance paramedic. He said he goes to urgent cases in his car to get to a scene quickly. He said it was nice to see someone alive. Sheesh.

Then the ambulance, much to Alfred's excitement. They took us straight to paeds A&E and there we saw various people, had tests, x-rays, more tests, got medication, instructions, more tests and a lot of advice. Seamlessly (although over quite a period of time). And FOR FREE.

It shocked me that things can go wrong so dramatically and so quickly. Rae is very clingy today, which is lucky because I'm quite clingy with her too. Tomorrow she will be six months old, and this is another reminder to never stop appreciating what we have.

Thank you NHS. Again.

I support #juniordoctors.

Saturday, October 24, 2015

Happy 24th October!

Three years. The further we get from the day I had brain surgery the more ridiculous the whole episode sounds. I mean, brain surgery! As if.

This anniversary has almost snuck up on me, I'm definitely getting less hung up on the detailed analysis and memories of 2012, although I've been anticipating the actual day with a nervous excitement.

I like a birthday, and a spot of attention, so I've commandeered the day. We will drink champagne and celebrate being alive and, at the risk of sounding all nauseating and gratitudey, be really pleased that I don't have a brain tumour. Anymore. 

Things have really changed in three years and I have a huge amount to be grateful for. Tomorrow (later today in fact) I plan on enjoying myself, with some of my favourite people. Happy 24th October! 

Tuesday, September 29, 2015

Poor frontal lobes.

I got a hand written letter this morning on my way out the door, and it isn't my birthday. Intriguing. I read the bolded top line of the first sheet as I gathered last minute socks and Marmite sandwiches together, then stuffed it in a pocket to read later. It said this:

Study: Using virtual reality to investigate multi-tasking ability in adults with frontal lobe damage.

Excuse me? Frontal lobe damage? Whilst negotiating the front steps with a buggy and baby strapped to my chest, I furiously defended my poor frontal lobes. Damaged? Huh.

I'm all for studies, and I like that I could contribute to improving medical knowledge. And the virtual reality part sounds cool! But I'm surprised at how icky it makes me feel. I mainly plod along in life these days and don't often think about braingate, it certainly doesn't define me. Yet here's this letter. My name languishing somewhere in a database with a big red FRONTAL LOBE DAMAGE flag on it. That doesn't feel so good.

I'm going to do it obviously. just needed to get that off my chest.

Wednesday, August 12, 2015

A year off scans, yey!

Despite the law of sod, my scan was clear. Phew. It's always a bit of an anticlimax getting scan results, I psyche myself up for potential drama and then there's... nothing. Obviously that's a good thing, just a bit deflating and exhausting.

I noticed a few differences in the neurology department though. It was rammed. Proper Sergio Ramos. It's been busy before but this was something else, people were standing between the seats and spilling out into the corridor. Several consultants were running 45 minutes late. There was an air of barely suppressed panic, and not at all suppressed exasperation. 

One man wooped loudly for joy when his wife was called in, causing several chuckles, which was nice. And Rae made people smile too. 

And there was the inevitable man complaining loudly. But what I hadn't seen before was someone defend the doctors to a complainer. I've come across them loads in my nhs journey and always quietly seethed to myself. A woman properly told him, and I was full of admiration. 

It feels different, but it might be all the Labour leadership campaigning I'm reading. It feels like there is a real swing towards appreciating the nhs, by actual people using it, not just on social media. It's exciting. 

I was in with the consultant for about a minute and a half, we had precisely two conversations. 

1 - he said I was fine (that was the medical part over, in three words) and that next year (a whole year! hurray!) they would telephone me with the results in an attempt to reduce the circus in the waiting room. 

He said they were doing that for younger (oh, thanks very much, *swoon*) patients, with no complications. I said that sounds brilliant and that it must make things easier for the department, only to find out they are expected to do this on top of seeing the same numbers in clinic. Mental. I really don't know how they don't all have nervous break downs. 

2 - I asked how long I would get scans for and was told five years. And that's it, no more scans. I don't feel so great about that, to be honest. The original prognosis was 11% chance of regrowth in ten years, so what about the other five years, are they just going to not check? 

Of course I didn't mention that. I was aware of said circus in the waiting room and I was trying to process my thoughts quickly, so I just said ok. But now I'm worried about it. Which is ridiculous as it's still two years away, but I do like having something to worry about eh? 

Monday, August 10, 2015

Bottle or breast? Yawn.

One thing that really irritates me is people getting narky with each other about how they feed their baby. I haven't ever written about this because it's dull, and there is so much out there that makes me cross, I'm not sure I can write about it without making other people cross. But I'm going to try.

I've had two babies now, and I still don't have the authority to advise anyone on parenting. It's a tough gig, everyone knows that, and there are loads of ways to do things. None of them are (is?) the right way for everyone. (Oh god, I've lost the power of grammar, and the patience to work it out. I am too tired).

I breast fed Alfred exclusively, for quite a while, and for the first seven weeks have breast fed Rae too. I come from a family of breast feeders and it seemed like the natural choice for me. That's what boobs are for, after all. And there are other reasons, like convenience and cost saving, but there are clearly some negatives too. Thing is, it was my choice. And it is nobody else's business (except maybe Oliver's). 

National breast feeding week has just finished and it sure does bring them out. I am all for normalising breastfeeding, I find it embarrassing and humiliating to get boobs out in public, and the more that becomes accepted as normal, the easier it would be. But what is with the shaming? Each side of the argument feel victimised by the other, as well as by the general public at large. What irritates me is groups heaping shame on the other side, whilst complaining about being shamed.

Anyway, moving on. 

As a breast feeder, I've not had much experience with bottle feeding, but yesterday I was forced to bottle feed for 24 hours after being injected with contrast for an MRI. Although I was wary she would refuse to feed and we'd be awake all night with a screaming baby, I was interested to see how bottle feeding went. These are the things I learnt. 
  1. I could totally get used to not always being the one doing the feeding!
  2. I'm not comfortable with anyone else doing the feeding, that's my job. She needs me for that, and I like her needing me.
  3. Sterilising. What a pain in the arse. Especially when you're inclined to drop freshly boiled things on the floor and have to start again.
  4. Formula is gross. Thick and sticky.
  5. Babies are not patient when you heat up their milk too much and have to cool it down again, and then re-sterilise the bottle having dropped it on the floor. And then start again because you used a normal germ-ridden non-sterilised glass to heat the milk in a sleep deprived haze, defeating the whole purpose of the goddamn sterilisation process. Waiting quietly and patiently, not so much. In the middle of the night? Funtimes.
  6. It's nice, not having to expose yourself all the time.
  7. It's nice, wearing proper clothes and supportive bras.
  8. Who knew how much milk babies eat? Wow, no wonder I have been hungry!
  9. Maybe I could get comfortable with someone else doing the feeding, in return for some sleep.
  10. In our short experiment, the rumour appeared to be true. She slept for EIGHT HOURS on formula. Hmmm, let me think about that... (This would have been wonderful had the two year old not had a total shitfit and shouted for five hours straight. Our neighbours love us). 

Conclusion: I can totally see why people would choose to do this. As expected, there are major benefits to bottle feeding. It was interesting to try it for the day, but I didn't really find anything out that I hadn't predicted.

The cost saving argument is a winner for me, and the convenience of not having to sterilise and heat and basically keep a hungry baby waiting. I like that boobs make the exact amount of milk the baby needs, and it is made especially for them. Also, I like that I can eat cake a lot. The exposure and sleep deprivation are worth it for that.

There are great arguments for both options, and so I will stick to my original opinion - whatever works for you. No judgements. YAWN.

Wavering smug face.

Today is my consultation following Saturday's MRI. Only having to wait two days for the results is brilliant, but I've been so confident about the outcome that I haven't even thought about it. Until now, 2:30am.

I'm confident because it hasn't been that long since I had a scan, an emergency one in April - fully convinced that a great big tumour had returned. I was wrong, the scan was clear. And I felt like a bit of a nob to be honest. 

I haven't been confident when receiving the results of a scan before. And what does the law of sod say about that eh? 

Saturday, August 08, 2015

Scan day. Again.

It's snuck up on me this time. I've not really had the opportunity to think about it, which is possibly a good thing.

The logistics of leaving the house is complicated enough at the moment, but now I have to think about baby milk and bottles and sterilizing and how to heat up milk, on top. 

I had an emergency scan in April which was clear, but because I was pregnant I didn't have contrast. In fact, I have been pregnant or breastfeeding for so long that I haven't had contrast since the original diagnosis scan, nearly three years ago. I can't wriggle out of it this time. 

On the plus side, it'll be conclusive. On the down side, it'll take longer, I'll be punctured in the arm, it will make me feel sick and I can't breastfeed for 24 hours. That means my boobs will kill, and I'll have to "pump and dump" (seriously that's what they call it), and hope that the baby will feed from a bottle. 

It's going to be an interesting (hungry and cross) 24 hours, maybe I should take the opportunity to get pissed. Who's with me? 

Thursday, June 25, 2015

Now we are four.

When Alfred was born I had no idea what to expect, but this time we had an inkling. Excitement and trepidation gave way to sheer desperation towards the end - I was definitely ready to have this baby!

And now she is here, and we are four. 

I've always been interested in sibling placement, and how that affects who you are. Me and Oliver are both second children, and very different to our siblings. In fact I don't know any siblings that are similar, so I can't wait to find out how different she is from Alfred. 

So far, tiredness and c section recovery aside, everything is going really well. Alfred has been wonderful, as has Oliver and my mum. A whole new chapter begins :). 

Rae Rebeka Morley, born 17th June 2015. 

Tuesday, May 26, 2015

The good old days.

What good old days? The more I think about it, the more glad I am to be alive in this particular slice of time. Hair straighteners, washing machines, brain tumour finder sat nav thingies, wifi, YouTube, dry shampoo - life would be way worse without these (not an exhaustive list...).

Obviously it's not all good, as another five Tory years of depression looms, but I just had a little weep over how grateful I am to the dishwasher. 

Bloody pregnancy hormones. 

Thursday, May 07, 2015

Don't read the internet.

A few weeks ago, I managed to thoroughly convince myself that not only had my tumour come back, but it had grown at super-speed and to terrifying proportions. What started as a few migraines, and a calm, logical thought process, very quickly grew into major hypochondria and internal panic, denial and general ridiculousness.

It's taken a few weeks for me to come to terms with what happened (which was absolutely nothing) and take a good look at my response to it. It feels like there is a lot to be learned from the whole experience.

The migraines and vision problems I had were (I think) justification for getting checked out, particularly in the context of pregnancy - there is a suggested link between pregnancy hormones and increased tumour growth.

My last pregnancy was so entwined with the experience of having a brain tumour that I can't remember it in isolation. The emotional recovery, and physical appearance (goddamn short hair!) was apparent throughout, and I actually found myself at the beginning of this pregnancy expecting a craniotomy to start me off. Yikes.

I think this may have played a part, it was like I was just waiting for it to happen. I read the absolute most negative possibility into everything that happened. The aura that comes with migraine? Must be tumour pressing on my optic nerve. I could go blind. How will I look after a newborn, blind?

And the final straw that drove me to middle of the night Googling (never to be recommended) was a numb hand. My right hand, for no apparent reason. This was what alerted my GP to the original tumour, loss of movement and feeling down my right side (also a common pregnancy thing, but I didn't bother reading about that).

By this point I had already had an MRI, and I was waiting for the results. I analysed in detail the behaviour and every single word the scan man said to me. It was ominous, I told myself, that he urged me to chase an appointment to get the results. He already knew by then what the scan looked like. And was that pity in his eyes...?

So I went home, cue major denial and didn't make an appointment. All the while absolutely convinced that I had a tumour and trying to work out how on earth I would manage with a toddler and a newborn whilst recovering from a craniotomy. Or maybe it was more serious than that and they would have to get it out before the baby was born. Craniotomy during pregnancy? Or have a very premature baby in special care? I decided the best thing would be to ignore it. Surely they would contact me if there was anything to talk about.

All the while people were telling me this was normal third trimester stuff, and logically I can see that it was. But I just knew it was a tumour, so I didn't listen. I spent a few weeks just not really thinking about it. And then I finally rang them up. The team explained that the scan was clear, they didn't want to see me, no need, nothing to talk about. Within minutes it was over and the full extent of my self delusion was exposed. What an idiot.

For next time, I'm sure there will be one, I plan to follow these simple rules:
  1. if worried, get checked out
  2. don't read the internet
  3. get results quickly
  4. do not read the internet