Tuesday, 21 August 2012

Oh, We Do Like To Be Beside The Seaside...

... We just don't like it when people interrupt us with crappy news.

So, last night we loaded the Evil Monkeys and the Ginger Idiot into the car and drove them down to Nanny and Grandpa Creeps, arriving very late. We were surprised to discover my brother still there, with his ENORMOUS dog, Billy, that my brother and his wife rescued. A first time meeting for my small ones and none of the three of them quite knew what to make of him. Territory was established by the dogs (my Mum and Dad have one too) and by the time we made it down this morning the three dogs were firm friends. The Monkeys are still a bit wary of Billy as he is a very big dog.

When Mr Creeps finally surfaced, he and I set out to have a bit of a reccy along the coast to see if we could get a 'feel' for the place. We want somewhere small, but busy enough to be sustainable, and most importantly - good schools. It was a beautiful day, and there's nothing like sea air and amazing scenery to really cheer you up. Mr Creeps had actually started to relax and get some human-tone skin colour going on.

Just as we were about to go and meet up with the Aged Creeps and the Evil Monkeys, we received a call from Haematology. The platelet tests had shown up abnormalities, and they weren't 100% sure that it wasn't because of some of the supplements that Mr Creeps has been taking. They want re-test in two weeks and are not prepared to sign him off for an operation until this is done, meaning postponing the Op.

We argued that he had stopped taking the supplements from round about the last set of tests at the end of July because he had been warned it could have an effect. They still want a recount. So, after much to-ing and fro-ing, they have agreed to get him in ASAP, to try and get the results back before Wednesday-week. Even if the results are the same or different, they will still make the same recommendations (to give him the medicine to he maintain the clots) as if he was going from THESE results.

AAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAARGH :(

Mr Creeps is leaving his job on the 25th to fit around this. We have arranged child care. We have spoken to their schools, altered holidays, missed festivals, and generally had a pretty dull year because of this op. We have arranged our entire lives around this date, and now they are telling us it may change because all the bloodwork has been left to the last minute.

Anyway, we took some deep breaths (a few smokes in Mr Creeps case) and went off to meet the gruesome twosome and their keepers for the day. We eventually found them on the beach coating themselves in ice cream (I suggested that suncream would have been a less sticky option), and so much ice cream smearing, sand-castle building, and 'splashing' Daddy went on.

Spot the professional...

Evil Monkey 1


Evil Monkey 2
  
A good giggle was had by all and it was two tired Monkey's that we put into Grandpa Creeps car to go back to their house in.

Finally, back home here tonight wondering what do we do now. The only answer to that is that we wait and hope.

Sunday, 19 August 2012

The Reason For All The Anxiety....

....is all down to Mr Creeps.

(This is going to be quite long, so you may want to go and get a cup of tea at this point)

Actually, that's a lie. It's down to poo. Dustmite poo to be precise. And pollen and pollution. And Mr Creep's physiological make up in his face and his immune system, but they are lesser things.


Dustmites - in your soft furnishings right now. Yummy.


Mr Creeps suffers from Allergic Rhinitis, which is like hayfever, but 50 million times worse*. It creates two reactions. The first is immediate and aggressive swelling in his olfactory system (nose and sinuses to us mere mortals), which only steroids can reduce enough to allow air through (ish). The second is for polyps to grow, thickening the walls of the sinuses and closing up the tiny little passages from sinus to nose, stopping the flow of mucus. It gets held in the sinus and goes rotten.


This is pretty close to what's happening with Mr Creeps right now


Doesn't that sound nice? And people wonder why he's short tempered.

Mr Creeps has large doses of steroids that he sticks up his nose (fluticasone) and pours down his throat (betamethasone). He regularly takes powerful penicillin to try and deal with the anaerobic (doesn't need air/light grow) bacteria, painkillers to try and keep the inflammation down and keep the headaches at bay, antihistamine every day, a huge range of supplements to keep his immune system on top form to avoid colds etc, and most recently he's had to take a powerful anti-fungal to try and kill the thrush infection from being on the steroids for so long.

Mr Creep's quality of life is pretty crap. He knows he has a loving family and everything he could ever need, but he can't enjoy it because he's always in pain and quite regularly ill. He can't sleep properly because he can't breathe properly. The steroids make him very emotional (we now have a punchbag in the conservatory to save the walls and doors) and they have made him gain weight. His tongue is swollen and sore from the thrush, but he has to be careful taking the anti-inflammatories as they make his stomach sore. He is depressed, tired, and very, very anxious about the next round of surgery.

This will be Round 3. Well, round 4 if you count the first time they tried to remove the polyps when he was 20 with some Lidocaine and what amounted to a pair of plyers. Oddly, he legged it. After that they discovered his immunity to certain anasthetics.

The official Round 1 came in 2002, when his polyps were so long they were nearly hanging out of his nose. The longest one was 2" long. What should have been a routine operation became a nightmare. 3 or 4 days after his op he began to 'spot' blood. Unfortunately, the consultant had flown away after Mr Creep's op. His colleague suggested we go to the nearest ENT clinic and let them have a look. On the 6th day Mr Creeps had a reasonably substantial nosebleed. Went to the hospital where they cauterised the inside of his nose. Yes, that IS as horrid as it sounds.

24 hours later, Mr Creeps nearly bled to death in our bathroom. Emergency services always think you're kidding when you tell them you're calling them because of a nosebleed. The paramedic who turned up in the car was really patronising until he came into the bathroom, then he was nothing but busy, busy, busy!

Round 2 was last year. The polyps had been building up again, and the sinusitis had been constant for about 18 months. The GP referred us and we duly went along to see the consultant. If we had known then, what we know now, we would have gone for an instant re-referral then. He was the most arrogant, awkward, dismissive, arseholes we had ever come across. We hated him from day one, but we were desperate, and assumed that if we went somewhere else it would be just the same. The only good thing that came out of it all was that Mr Creeps was allergy tested for the first time, which showed up the Dustmite allergy and a smaller pollen allergy.

Initially, the consultant cast a brief glance up Mr Creep's nose and told him that he didn't have any polyps. It was only when we pushed for a scan and it came back with a lot of white bits (matter) where there should have been black (hollow spaces), that he capitulated. He reluctantly put Mr Creeps in for surgery after suggesting the he should just live with it. Actually, to a degree - he was right, but he didn't offer us any alternatives or advice. That was it, and as 'living with it' was a nightmare, of course we opted for surgery.

During this time, we had repeatedly expressed our concerns about the bleeding, and as the wait was a good few months for surgery, suggested that the notes from the previous hospital got requested. We were turned down at every opportunity and the whole thing was dismissed.

After the op, it in the notes that the surgeon had actually had to do far more work than expected, including trimming down a a lot of internal scar tissue, and there were a lot more polyps than previously suggested. In fact, we couldn't even pick Mr Creeps up from day surgery til 7pm as he kept bleeding and they kept having to put the packs back in.

5 days later, his Dad and I took him to A&E, they transferred him back to ENT who kept him overnight and all the next day. They eventually let him home at 8pm having decided he wasn't going to bleed again. At 11.45pm I was screaming down the phone to the ambulance service that his ears were turning blue and he was starting to pass out.... Again.

The one abiding image (and I'm still sorry I didn't get a picture) was Mr Creeps lying on the bed in A&E with a big, bloody, perfect handprint on the side of his head, looking much like an extra from a Romero outtake.



He was transferred back to ENT where he stayed for another 2 weeks. In that time he had emergency surgery, by an amazing surgeon (who sadly, but understandably has buggered off to NZ), who not only tied off the artery behind his left eye, but also, while he was there, cleaned through his left hand sinuses (the job Mr Creeps went in for originally).

It took 6 weeks for Mr Creeps to be back on his feet. Even then he went back to work waaaay to early, and was then struck down by infection after infection. We finally educated ourselves and imported some suppliments to help boost Mr Creeps immunity, and reduce the swelling and the immune reaction. We also, got Mr Creeps to see a homeopath who has treated him to turn down his Dustmite reaction with amazing results.

By Christmas it became very apparent that while the left sinuses was in the best shape it's ever been, the right  sinuses were worse than ever. This time, we researched our ENT surgeons and went to see the lovely Mr Saunders privately.

He's was brilliant. He immediately looked up Mr Creeps nose with a camera (the FIRST time in 20 years - yes, really) prescribed Mr Creeps the right steroids, and booked him straight over to his NHS clinic on a 'emergency' basis for everything. He has taken the bleeding issue seriously, and referred us to Haematology who have taken about a pint of blood in the last two weeks. Our only hitch has been St Michael's Hospital's appointments clerk went sick and UBHT couldn't be arsed to find a proper temporary cover so the whole hospital's appointments were a complete mess. Didn't matter as we've been waiting on Haematology, and neither Mr Saunders or his counterpart are prepared to touch Mr Creeps with anything sharp until those results are in.

Mr Saunders is very interested in the success of the homeopathic treatment, and the cranial chiropractic treatments. He is also very interested in looking at stenting the pathways to the sinuses to keep them open. In fact, we've rarely encountered ANYONE (with a few notable exceptions - you know who you are) in the NHS with that type of forward thinking, pro-activeness we have encountered with him.

So, the op is on the 29th August, Haematology results dependent. They're keeping him overnight, which is fine. I want them to put him into an induced coma for two weeks through his danger zone (he could bleed at anytime), but apparently that's not the done thing so I will have to discuss something with the GP to try and help him with the anxiety.

Whatever happens, the recovery will be a long one. He's been ill for so long and there is so much for him to heal. Staying in Bristol is not an option for him, health wise. It's one of the worst cities in the UK for respiratory conditions. So, once Mr Creep's is fit enough to at least move, we're off to live by the sea.

*don't quote me on actual figures

Saturday, 18 August 2012

And So It Begins....

Welcome to the slightly strange world of The Creeps. A turbulent, often lively, regularly surprising, tornado in a bubble that is our daily lives. People who know us have said that I should write it down, as no one would ever believe it. So I am.

I decided that now was as good a time as any to start this bog, as we're about to embark on a new chapter in our lives. Extremely scary at the moment, but hopefully that will become a bit more exciting as time moves on.

I suppose I had better introduce 'the clan'.

Firstly, there's me. I never quite know how to start describing myself. I guess that I am all of the Heinz 57 varieties in one person. There are very few musical genres i don't like ('teeny pop' would be one. I have a plan of what to do with Justin Bieber, should I ever get hold of him, and believe me when I say that he would be singing a lot lower by the time I'd finished with him. And there'd be none of this 'Baby, Baby, Baby' shit, and a bit more of the 'please don't hurt me anymore'. Anyway, I digress.), We have approx 2-300 DVD's lurking around the place including everything from Thomas the Tank Engine to Napoleon Dynamite. I read as much as I can. We have about 400 books in the house and both Mr Creeps and I have a kindle each too.

I have a million food intolerances, the top of the list being certain fruit (Why not cake? Why the healthy stuff?), wheat, lactose, soya, and crustaceans (prawns, scampi, crab etc), and yeast. Mostly, I ignore them and take the meds. Except for the prawn thing. That's more of an allergy.

I spend too much time on Facebook and occasionally drop onto Twitter. I have an itch to have a look at Pinterest, but fear it would consume me. I also have an unhealthy interest in Spotify and have about 14 playlists ranging from Dubstep to Goth, via Metal and Bavarian Folk Punk Pop.

I get bored easily. Oh, and I suffer from atypical depression. And I'm scared of spiders. And I love zombies. And I'm a part-time member of the Bad Mother's Club.

I have been with Mr Creeps for over 14 years (you get less for murder, you know). Mr Creeps is my tall, growly man. He is absolutely brilliant at getting us discounts, extra stuff, value added, and all that jazz. He's also the person to take someone to task when the service has been shocking. He is mostly unafraid of anything (except Earwigs. He has a real issue with earwigs) and will stride where angels fear to tread. He does brush up nice, too.

Unfortunately, Mr Creeps has many, many problems with his health. He is due a third (and hopefully final) op on his sinuses in about 10 days to repair the fuck-up that was the last one. He also has an added complication of delayed bleeding post-operativley. Hopefully Haematology are going to come up with something for this in time. He's been on steriods for 2 years and is very sick of being sick.

He is also an avid gamer and is currently addicted to Star Wars: The Old Republic. Oh yeah. Nearly forgot. he's also a tattooist and body piercer.



Between us we are responsible for a motley collection of reprobates.

Featuring most largely in our lives are our Evil Monkeys, known only as '1' and '2'. They are 'nearly 6' and '4 and a HALF' respectively. They are the blight light of our lives and certainly know how to keep us on our toes. If someone is going to hurt themselves it will be Evil Monkey 2 (4 visits to A&E in 2 years, one of which was because she's split her head open showing off and another with a badly broken leg), whereas Evil Monkey 1 can throw a spectacular tantrum.



They're both waaaaay to clever for their own good.

Their older sister is currently 'Shewhowillnotbenamed' as I haven't yet asked her if it's okay of she appears in this blog. Anyway, she's at Uni studying Practical Media and thoroughly loving it.

Then there is the dog. In the loosest sense of the term 'dog'. Small, ginger, thinks he's human. A molting, mental, kamikaze food whore, who's scared of helicopters, police cars, the dark, and fireworks, but will sleep through a massive storm. His name is Rocky (we didn't choose it, but the IQ is about the same level), he's 7 years old, and he's a Patterdale Terrier cross. I think crossed with a tree stump. Head first.



There are also a selection of Grandparents, Aunties, Uncles, cousins, Godparents, honorary family, etc that will appear on and off, but I also have to get their permission before I can add them, but don't worry. They'll all make an appearance sooner or later....