Well it’s been a tough couple of weeks. I’ve gone from 3 months of only being able to squeeze 4-5 hours sleep a night out despite the best drugs on offer, to in the last 2 weeks sleeping 20 hours a day. I’ve also developed a new infection in my bladder – excessive urination, feels like you’ve been kicked in the nuts every time you sit down – which has not been pleasant. This is on top of the oral thrush which I’ve had for at least 2 months and drugs can’t seem to shift, makes me feel like I’ve been gargling sand and I have to say leaves your mouth tasting even worse than after a night of beer, cigarettes and kebab with garlic mayo (mmmm) – I can still just about remember those…
I’ve been trying to see the funny side of it however alas as the last couple of weeks have gone on it’s become harder and harder as I’ve reached depths of exhaustion even Sandhurst never got me to. Anyway my wonderful GP and an excellent dentist now seem to have got me on the right antibiotics and they are helping, thank God. What a relief although I still feel like Buster Gonad.
I also have a wonderfully caring wife who this week has taken a grip of various medical issues which with how I’ve been feeling I’d lost the will to follow up. For the first time since this ‘adventure’ began, in the interest of splurging my personal thoughts into the public domain, I will admit that at one point (actually a number of occasions, be honest Mike) I found myself thinking maybe no treatment would be better than months/years of feeling this crap – I know I know, mental slap around own face. Golden opportunity to learn how to talk to wife more, I’m trying.
Kady spent a day harassing the NHS to death and after FOUR weeks of nothing, finally got a date for my lung biopsy – 16 Dec. She also took the decision yesterday to discuss my severe downturn over the last couple of weeks with the Oncology Dept at Southampton who in light of everything asked for me to be admitted immediately. So a bit of a mad panic and a day of getting checked out in the hospital, was not overly impressed when I arrived on the ward and their first words were ‘you will definitely be here all weekend’. ‘We’ll see about that!’ I thought to myself knowing full well nothing happens in hospital at the weekend. Anyway they were wonderfully helpful as always, fantastic Doctors who always take the time to explain things and I got the full MOT.
Outcome – home by 1800, crack on with the antibiotics, I’m not about to drop dead, nothing sinister is going on however directed to increase my dose of Dexamethasone – steroids booooo – to get rid of the pressure headaches which were returning and will also give me some energy back. Makes sense but I did discuss (barter) with the Doctor about just how much to increase them by, we reached a compromise, it’s a balance of symptom relief without increasing the horrendous side effects.
It appears the explanation for my sudden and dramatic loss of energy and ability to stay awake is down to something called Hypersomnia or Somnolence Syndrome – Link – I was originally told this would hit me 2-3 weeks after Radiotherapy finished which would make it early October, it never did. I attached no significance to that as they did say not everyone gets it and I was also having a great time getting married and honeymooning. Well turns out for some people it can be 2-3 MONTHS, that’s me! So, non-sinister explanation for how sh*t I’ve been feeling for the last couple of weeks, that on top of the two infections. Morale not the best at the moment but Kady and I working on that and as always I know there are people far worse off.
One major lesson for me, again, I keep being too nice about accepting well meaning invitations to pre-Christmas events. I simply haven’t got the energy at the moment and am about to turn off ALL invites, I need to hibernate until my biopsy on the 16th, that’s got to be my number one priority. Really appreciate everyones’ care and concern, comments on here are fantastic – in fact more please – but I would ask that people avoid phoning or asking me to go to social events, boozing and being in crowded rooms are so far off my radar you wouldn’t believe it, who’d have thought I’d ever say that! I’m not being rude, but I need to beat these infections, get through this somnolence thing and be as fit as possible for my lung biopsy.
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Hello hon, think I was also suffering from hypersomnia in the epic 10hr meeting I was in last week! So sorry that you are going through a slump patch, I hope it doesn’t last too long. Sending you lots of love and best wishes, Sal xx
Hi Mike, Hope you’re feeling OK today. We’re thinking of you here in Hullavington. Don’t forget, when you feel up to it and the doctor says it’s OK, give me a call and we’ll go flying.
Regards, and have a good Christmas,
Mike and Helen.
Mate, why change the habit of a life time and start being nice!? You need your energy for one thing and one thing only. If you don’t start orbiting your own world more completely until you are better, you may get another visit from me. Take that as your first warning. From the master of guilt-free self-orbiting. Dan
Hi Mike
You’re doing the right thing. When that radiotherapy catches up with you it really knocks the wind out of your sails so listen to your body and sleep. When you’re sleeping you’re healing and getting stronger. I learned to listen to my body a long time ago and it works.
I’m going to add your link to my blog aswell because it appears we have the same sense of humour and outlook. I’m always trying to see the funny side of it all and i’m sure it works.
Good luck on 16th, although i know you’ll be fine.
Lisa
Hi Mike, nice to read another Blog from you, was wondering what the problem was “but being Knackard-infections & general feeling like Shit”, I will let you of lol. Hope the Bio goes ok on the 16th. Nothing I write saying how much we hope things become easier for you & the pissn infecion clear up will truly come across very well with my crap English Grammer, so I will just say I HOPE THINGS improve for you mate “and for Kady”.
Anyway enougth about you, I will tell you how shit my day was yesterday “Friday”, as u know it’s been snowing & cold here in Droylsden, but Windows still need to be cleaned, so I leave for work @ 7.45 driving to Denton, the roads are crap it’s frezzin but after 30min I get to Denton I get out my van & then realise Iv left my ladders at home “did I swear?” well maybe a little, so it’s another crap drive home “road works from HELL around Droylsde”, but I get home vet my ladders then drive back to Denton, it is now 9.30, the 1st house I clean the water freezes onto the Window, Right I thought it must be a cold house, I will clean the house next door AGAIN it freezes, right it’s time to go to a cafe & have a breakfast £5.50 for a Warm, Crap Breakfast, it’s now 10.30, Iv earnt £0.00 time to try again & yes its still to pissin cold Iv even put anti-freeze in my bucket of water but it’s still frezzin on the windows, so it’s time to go home & cry. Get home at 11.15, earnt no money, had a crap breakfast, but Hay thats life lol. Today is another day, going Chrimbo Shopping with Sara Yippie!!!!!
Right Mike best go and get a shower, will be in touch again Via this Blog, love reading it “crap news at the mo”, but hopefully things will get better. Read the PS bit so not a word from me & Saz. Hang inthere mate. Speak soon, Derek.
PS hope you don’t mind me writhing my story on you blog, just thought it might make you laugh :-)
hello
You dont know me but i use to work with Kady on Ward 18. Kady knows that i have been following your story on this blog. I hope that you have a quiet few weeks and that the 16th goes as well as it can. As Kady states on her FB profile “i kick ass in the nursing trade”, i am sure you are in very good hands. Congratulations on your wedding, your pictures are stunning.
Regards Clare