Merl,
Good to hear from you: it is always a worry when any member goes quiet, often not a good sign. I’m sorry you’re having a tough time of it and I hope you get that gadolinium flushed out soon.
Big hug from me!
Richard
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Hi Merl, Sorry you’re feeling lousy. I don’t see why we have to beg for copies of scans. Don’t we, indirectly, pay for those expensive fancy machines that take the pics? I could understand if you were a minor or incapacitated, but besides being a teeny bit weird, you have as much mental capacity as anyone I know. I’m hoping for favorable results for you. Greg
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What’s this teeny bit? I’m fully, no teeny bits here. 
It’s going to be a months wait, so I’ll wait, get the neuro’s interpretation and scan authorization directly. I don’t really see the sense in getting a 2nd opinion when I haven’t even had the first, his, opinion explained. I can view the images and I can see the issue, but as to why going chop, chop is the best option, that needs to be discussed…at length and explained… …at length.
Merl
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I have to agree! 
Keep going Merl!
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OK you lot, here goes…
That “more surgery on the horizon…” line has suddenly has taken a dive into the land of shocking.
Last week I had and infection, a throat infection I thought, but my ‘normal’ sore throat management wasn’t working. Went to the GP and was told '…probably dental, here take some antibiotics. Upon visiting the dentist, she removed ALL of my lower teeth 
The infection didn’t clear up, if it was dental that should have fixed it. It didn’t . Returned to the Dr, got stronger antibiotics and was told to go to the local hospital. Due to all of the neuro involvement, they didn’t want to know and sent me to the city base hospital.
At the base hospital (They already had all of my info) they go through my info with a fine tooth comb, confirming and I’m think ‘That’s a bit odd’. They had a nurse, OMG, tries to take blood (I’m sure she was a student). She stuck me and missed. Stuck me again, got it, but went straight through the vein and out the other side. But instead of slowly withdrawing it until the flow increased, in the vein, she pulls it out and has yet another go in the other arm. This time she’s got the angle all wrong. I says to her ‘Give the needle to me…’ ‘Ohh, we cant do that…Hospital policy…’ comes the response. and I told her “You can’t go digging around like that though” THANKFULLY, a senior came and took over. But a few days later and I’m still all bruised to buggery. Ohh, she made a mess of it.
They scanned me, had a chat, ummed and ahhhed. Then scanned me again with more deep discussion in hushed tones, then again and I’m thinking “WTH, something’s going on here…”. So, me being me, I ask ‘What’s going on?’ the young nurse turns to me white as a ghost and stammers without being coherent. The older nurse moved her on saying we found something on the scan. Even I’d already figured THAT out. “There’s an abcess…” OK, abcess/infection/antibiotic that’s fairly parallel, I thought. Then she says it’s multilobed and you need a biopsy. VERY rarely is an abcesses termed multilobed, unless there are multiple sources of infection. They often take swabs for infections, but a biopsy that’s looking for an even greater nasty and click…, …click…, …click the pieces all started falling into place.
Now, our hospital system is fairly overwhelmed and I thought “Maybe in a month or 2…” Ohh, no. One dr says ‘within 3weeks’. Next dr says, by the end of the week They NEVER act that quickly for an abscess. Late Sunday night we got a call for the appoint Early Monday morning, the next day. They NEVER act that quickly for an abscess. So off to the city hospital on Monday I go. The ENT says ‘Well, we’re calling it an abscess… …at this point…’ but we need to take a clear margin around it". They don’t use that sort of terminology for an abscess, that’s a cancer terminology. Then he tells me they’ll probably need to take the tonsil too. OHHH FFAARRKK. This wasn’t just an ENT appointment, this was pre-op assessment. The ball is already rolling and it’s picking up speed.
In the mean time, knowing all of this, I’m also trying to keep wifey ‘cool, calm and collected’. So we’re calling it an abscess, at this point. We’ll have this biopsy then see where we’re at, just taking it one step at a time… …despite the fact I’m probably 10 paces ahead in my mind. The hearing in my right ear has slowly decreased, for the last 2days I’ve heard nothing on that side, just a humm. And the headaches… But then as one doctor said “That’s normal for you tho…” which is true even if I didn’t want to be reminded of it. I think he knew where my mind had gone, cancer, and was trying to divert my thinking (unsuccessfully). Look, they could come back and confirm an abscess and my reoccurring head pain is just that, reoccurring head pain despite the changes in headaches.
Not quite the ‘Update’ I wanted to be giving, but here we are. I reckon they should just chop it off at the neck. Quicker and simpler for everyone that way 
I’ll try to keep you all updated as time goes on.
Merl
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Crikey!
That’s plenty going on Merl! In all the ways possible, I’m sure “abscess” is the right way to think about it unless/until proved otherwise but yeah. Crikey!
I want to use Hugh Grant’s line out of Four Weddings but this is a polite space.
There are plenty of people round here who believe in the power of prayer if that is helpful to you: just say out loud.
Definitely thinking of you!
Lots of love,
Richard
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That is a whole lot in a short period of time to be hit with. I do agree they are using some odd language but would really hope they are completely up front and not thinking we’ll call it ‘A’ until we prove it is ‘B’. My thoughts are with you, John.
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Very best wishes from me also.
Lulu x
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Merl,
I hope it works out well and it strikes me as very painful sounding 
so I hope you get out of pain as soon and as effectively as possible!
Very best wishes,
Richard
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Merl,
Very sorry to hear this. Please be assured of my 
for you. Wishing you the best.
Mark
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Thanks to you all.
Back in the 80’s there was an Aussie comedian ‘Kevin Bloody Wilson’. I don’t think he knew that word ‘polite’ and a line I remember “Starts with an ‘F’, ends with an ‘F’ and probably has a couple of ‘F’s’ in between…” and me, I’ve been 'F’ing the world and everything in it. I just have to play the game with the cards I’ve been given, but I still think this deck of cards is rigged That pain monster has, yet again, set up residence in my skull. Ohh, such fun.
Yea, it was and the shots, they just keep coming. They keep talking in cryptic circles and if I was an unexperienced layperson, with no medical sense/knowledge I’d just walk away, but I ain’t that dumb. I can read between the lines and… …Ohh shit, here we go again. Tsk.
To be completely honest, I knew something was amiss and I had been telling the medicos exactly that, but it was (AGAIN) all minimised, until now. As I’ve repeatedly told others “Look after your health whilst you’ve got it, because once it’s gone. It’s gone.”
Thanks @Lulu1
Thanks Mark @ModSupport
Merl
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Hi Merl, Well you finally succeeded in rattling my cage and that takes quite a bit. I’ve been down that road where they’re trying to hit the vein and digging around and I have “good veins.” I was ready to punch the nurse but I’m way too polite for that. I was like just put an IV in if you’re going to need to do this again in the foreseeable future.
No use my talking about the worst case scenario with cancer. We both know…
I’m praying for you Pal. Greg
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I got the call this morning. Seems I’m up for the chop-chop on the 6th. 5 days to go and I’ll be counting down each one. I won’t say I’m panicking, more resolved to the fact, but that doesn’t mean my mind isn’t travelling at a million miles an hour with all of those ‘What if…?’ type questions.
Merl
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Merl,
Best luck in the world to you! You deserve as much luck as we can scrape together.
I hope it goes well and I hope you get out of pain.
I understand the whizzing mind. I don’t have any tips for combatting that other than to keep as busy as you can in the meanwhile. An empty mind isn’t helpful at the moment, so keep busy, do a decent amount of exercise to keep you tired and hopefully you’ll flop into bed as well as anyone at the end of each day.
You’re a great bloke to have around. For a guy who is most often unwell you help the people here and in the other Ben’s Friends communities in a straightforward but I like to think uniquely sympathetic way! Maybe encourage yourself a bit with some of the great things you do. They’re very simple things really but I think the impact is fantastic. Often when we are ill at home, kept in a dark room, it can be completely isolating, (completely depressing) but through the magic of the internet and that great idea that Ben and his best friends had all those years ago, we are able to be together, stand together, in tough times like this and you’re a big rock that forms the foundations of that.
How are you doing re pain? Are you doing ok with migraines etc or are you pretty much sheltering in a dark room?
Lots of love,
Richard
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Thanks Richard.
And I think you’re correct. The reality is that’s been my whole working life, supporting others. I’m the help, always have been. If someone needs ‘a hand’, I’ll give a hand. If a job needs doing, I’ll do it. But to then turn that around and use it to benefit me… …ohh, that’s very foreign. I can focus on others all day long, but to focus on me… …ewww, that looks awful.
I’m not a great one for the ‘touchy-feely’ emotional side. If I see a woman crying, I’m a mess. I go to tears myself. I’m much more practical. Identify the issue, work out a plan to deal with the issue, put said plan into action, review, then refine to reach an achievable outcome. Then I look at me “ohh, that’s just all too hard. can’t deal with that…” It’s a form of avoidance and I know it. There’s an old saying “It’s much easier to point out the splinter in someone else’s eye than it is to see the tree trunk in your own eye”. I’m not a fan of mirrors
I know, I can focus on me, but if I truly go down that rabbit hole, I’ll get lost in the labyrinth. I know this 'cos I’ve been way, way down there before. That ain’t a place I EVER want to return to. Many, many moons ago I tried to tell people ‘Somethings not right with me’ the dr’s didn’t or wouldn’t listen, so there was nothing wrong. I was ‘attention seeking’ and the medicos decided I had a mental illness. I was labelled a hypochondriac. I was sent to councellors and head shrinks of every colour and creed because ‘you just can’t be having pain like that’. But I was. I learnt not to trust my body, in fact it was beaten into me and from that I learnt not to trust authority. This all happened over 40 yrs ago, but still today, focusing on me… …YUCK. When I ceased work, I was floundering. I had a few projects, which physically kept me occupied, it exhausted me. But my head would lead me off into the never, never. I needed to occupy my mind when my body simply couldn’t do ‘practical’. Enter Ben’s Friends.
I’ve said to many people many times, I don’t do this as an altruistic undertaking, not at all. In other words I get as much, if not more, from sharing my experiences and using them to assist others. Thankfully, not many people have the need to go down the neurosurgical route. It can be isolating and scary as all hell, it was/is for me, but there is a light at the end of the tunnel (and it’s not always a freight train coming the other way), we can get through this. If I can be a source of some of that light, that’s worth all the tea in China to me. If I could have had a ‘Ben’s Friends’ support system when I started my journey, ohh how different it could have been.
As for the pain. I haven’t had a pain free day for years. Yes, it’s increased but I ‘try’ to simply add it to my ‘load’ and carry on. I have my usual management tools and I utilising them as needed. I’ve been doing that for years, so adding to it, that’s normal for me. My symptoms can fluctuate massively day to day. The fact that they ripped my teeth out last week, the healing pain of my gums is keeping my pain higher than ‘normal’ anyways. But it’s all getting a little too real ATM. These hospital appointments seem to keep coming and now with a surgery date The good thing is that I don’t really have time to think about it all too much. I’ve got too much stuff to sort out prior to sit down and think. When I can see myself heading down the rabbit hole, I grab my boot straps. I ain’t going down there.
As I said to someone the other day “We all have our ‘Load’ to manage and this is mine”.
Ohh hell, I’ve just gone back a read all of this, sorry for the novel, but that’s where it’s all at. I told the wife today that I’m really disappointed with her, she’s had time to go find a gun. It would be much easier for her if she’d just go get a gun. She tells me the fact the gun laws here are so super restrictive it would take months to get licenced, approved. Then she’d have to hunt me down and she reckons she doesn’t have the energy for that anymore. Just slack, I tell ya
Thanks
Merl
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Merl,
This is the place and time for as long a story as you want to tell tbh.
I don’t do this for altruism. Proper altruism is where it is actually a little injurious to oneself to go out of the way to help another. “Altruism” is an overused word, used too cheaply these days. And I get plenty out of helping people, even if it’s the very simplest things, like written words on my phone.
Amazing, isn’t it? How language can drive so much good (and for some reason people use it for bad stuff, too). To be in your room, on your own, uncomfortable, able to “talk” to others, literally on the other side of the world.
I’m currently in a McDonald’s having scoffed a crispy chilli chicken wrap, a hunk of pineapple and a drink. The sun is shining (it was hailing a few minutes ago) and I’m about to ring an old lady in her 90s, agree that she needs a bit of shopping picking up and go get that shopping done for her. It’s not going to be much. She has most of her meals delivered for her but the parts I get to do are the desserts, the best parts of the week I like to think.
What more is there to life than this?
Nothing really. To love, perhaps, and be loved in return as the song goes.
Lots of love
Richard
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Oh Merle I’m at a loss for words this has been coming or at least on the burner for dag nab a year. Im impressed you haven’t taken a long walk off a short dock… Kudos to your wife. If you are anything like me in dealing with uncertainties my wife would have found a gun somewhere…
Seriously though reading all of this (not seeing the scans) is a bit encouraging as scary as it all is. Not making light of cracking your skull open again. But an abcess after these months indicates to me a smallish problem that needs a big solution. In short you are such tough ol’ SOB you’ll be back soon. You are so loved, in all of our communities… can you convince your wife to keep us posted???
Tj
Hey Pal, I guess when I boil down your last missive it’s good news, albeit quite scary-- you have a surgery date and your wife hasn’t shot you. (The gun laws are much less restrictive here in AZ. Have you considered a “compromise”… say a bullet in a place that would hurt a lot but not kill you. It would eclipse all the other pain and you’d have the comforting knowledge of exactly what the cause is and why it happened when it did. Certainty!!
As you can tell Merl, I’m resisting the temptation to get all serious and touchy-feely. (Knowing you as I do, you probably would tell me, “Greg, just be yourself, I already know you care.”)
I do care and I think you’ve suffered enough pain for a small army. I had a “talk” with the Higher Power to let Him know that He’s gotten a bit carried away and should ease off a bit. Best wishes, Greg
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Hey TJ,
“…this has been coming or at least on the burner for dag nab a year.” It’s actually been much longer, I just tried to ignore it all. The medicos kept telling me “it’s just all in your head…” imaginary like. I wish it was 'cos then I’d be able to imagine it all away. But it’s all too real to be imaginary. I could easily fall into a heap, but what for? It doesn’t get me anywhere. It just puts my load onto others, hell, I have enough issues dealing with it all. Giving it all to someone else to deal with would just be cruel. I couldn’t do that.
When the '13 neurosurgeries occurred and I wasn’t recovering at the pace I wanted and was so &$%@& frustrated with it all, the wife was scared to the extreme that one day she’d come home and find I’d ‘…taken a long walk off a short dock…’ and I must admit I was sorely tempted, but that would not be fair on her. She has been my rock, that would be the ultimate disrespect in my view. I couldn’t do that to her. And I made her the promise that I wouldn’t.
Because this journey has had so many ‘WTF moments’ that have occurred without warning, I’ve made a list of “What needs to happen…” and “Who needs to know…” if the shit really hits the fan. You are all on that list. If at any point I’m completely incapacitated or they need to connect me to a machine to sustain life, she’s been told, turn it off and send out the messages.
Thanks for the support. You have no idea how much it means to me.
Merl
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Merl, I don’t want to be an echo chamber of what has already been said, it would appear we have a consensus! I too thank you for all you do, and the experiences and perspective you share that benefits so many, so often. I believe your 6th is my 5th, and you will be front and center in my thoughts that day and will say a little toast to you with my morning coffee. I look forward to the post procedure update from you! John.
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