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Eyes everywhere.

Is it wrong that when someone steps into your house they have eyes everywhere? Yes its natural to look about, we have all done it. A quick glance. A cursory look. I get that but there are some people that seem to take it to a whole different level and it annoys me. My husband said he was expecting it on this occasion and boy he was not wrong.

Recently we had an appointment for a home visit from a nurse to teach me how to administer my husbands new arthritis medication via injection. Husband said I better move anything that I didn’t want seen. Trust me our space it tiny. Its not as tidy as I would like. So I cleared a few important bits away so they were out of sight. Then we get a call to say they are going to be early. That’s a first.

A bubbly gentleman walks through the door and within less than a minute he is stood, eyes on our calendar on the wall which I had made up for my husband using our holiday photos. ‘Wow that looks impressive. Some one was enjoying themselves.’ I was in the kitchen thinking he was referring to our wedding photo which is proudly hanging on the wall. ‘Where were you?’ ‘Maldives husband replied. ‘Oh right, both pictures?’ Yes.

His eyes then moved round the room. Over the TV is a small shelf with two wooden animals we brought back from safari. ‘Oh look at that giraffe and elephant. Where did you get those?’ Africa I replied as I appeared from the kitchen. My eyes going to my husband who shot me a look that said ‘I told you so.’ I glared at him, I hate it when he is right.

He was only in the flat less than fifteen minutes but he made me feel really uncomfortable. Some of you would probably claim he was trying to find something to put us at ease. Make a connection. Find something to talk about. To me it felt nosy. Overly… I’m not going to say friendly but comfortable maybe. Too comfortable.

I have experienced this with a family member in the past. If a letter was left on a pile away from where they were sitting they would make the point of reading it. How did I know they had read it? They mentioned its contents. I’d not got around to putting it away. Is that not rude? An invasion of privacy. Who runs their eyes over someone else’s correspondence? If you are going to do it at least keep quiet about it.

So am I wrong? Is it acceptable to go into someone’s home, as in this case, once, and have a good look about and comment on several things? People have commented in the past that I am too serious about pretty much everything. The phrase ‘I should lighten up’ makes me roll my eyes. I see it as I am there to even the scales somewhat for all the people for which everything is a joke… just saying.

Sure I have gone into people’s homes and noticed family photos. I have wanted to comment about ones that are missing but I wouldn’t dream of saying anything. I don’t peer into open doorways as I walk down halls. I sure as heck don’t open closed doors. I feel guilty if I get lost going to the bathroom and end up in the wrong room. Maybe I am the odd bod is this case. Maybe my eyes should be everywhere. But what if I see something I shouldn’t? I worry about these things!!! E x

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Information overload

How do they expect patients to take so much information in at one time? Is it done that way so they can blame the patient when things go wrong and appointments are missed? Recently my husband had an afternoon admission for spinal injections. He was the first one in theatre because they wouldn’t sedate him. Don’t ask its a long complicated and frustrating situation. I would like to point out this was a private hospital appointment covered by my work’s insurance.

He was back in his room for less than ten minutes when his door became a revolving one. A nurse to check how he was feeling. Another lady asking if he wanted a some water. Then another to see if he was ready for some food. The nurse comes back to tell him he isn’t to get up without her being present.

His food arrives then the physio appears. The poor guy is trying to eat his food as he is hungry but she wants to ask questions. Up I step into carer role to provide her with information. Have you had these injections before? Do you have a history of back problems? I am trying to bite back the sarcasm. No he just thought it would be fun to have a consultant stick needles in his spine for no reason. Then wanting to scream at her to read his notes.

Are you here under medical insurance? Oh good heavens read the information in his file. Yes. I try to take the bite out of my response. Right so we will arrange a physio appointment. That wasn’t part of the approved treatment plan from the insurers. Call them I’m sure it will be fine if not it’s not that expensive… rude darling to assume we can afford it. So I hit back. Don’t bother booking us an appointment with the gentleman as he is useless. I didn’t have to say anymore. Oh OK. That alone told me lots.

She then stands beside me and reads me the information in the suggested exercises. It wasn’t quite finger under the words as she read but not far from it. Get him on the floor. I was having Deja-vu. These are the same exercises he has been given after every back procedure. I just let her talk, then she went off to book an appointment. One that we will cancel. She comes back and starts telling him what he can and can’t do.

Finally she leaves and husband say he needs the toilet. Not a nurse in sight. I go and find one. She stands and watches him get himself upright. I’m there helping him up and she doesn’t seem bothered. He walks to the toilet and comes back. OK you can get dressed. She leaves. Then another nurse appears and starts telling him what he can and can’t do. She tells us the information for his follow up appointment, all while I am helping him get dressed.

By this time my head is spinning. My information retention is usually pretty good but I have been given options for physio appointments and now I am questioning what is what. I know the follow up is in October and I know it is in the evening but that is the only information I retained. Another nurse appears with his discharge paperwork and tells us different time scales for recovery, rest periods after and suggestions for what he should do. To say I was confused would be an understatement. They were all reading from different pages.

All this took less than an hour from when he was back in his room. I have never felt so rushed before. How a patient could take all that information in I have no idea. My husband said he gave up listening. I failed miserably. Mind you there were a few different versions. I think we will listen to his body and I will make some calls when things have settled down. Ex

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Being hit by emotion

Do you ever get hit by a wave of emotion when you least expect it? That emotion is caused by something so innocuous and that in itself is surprising. But when it hits two of you at the same time… well that is a lot to deal with. Let me explain.

Over the last couple of months we have been clearing out my family home as my dad has finally decide to sell it. Due to space constraints in our home I never really moved many things out of my room when I got married. Clearing it out always got pushed down the list. All the while hoping we would eventually get a house then my things would finally move in too.

The main things had been boxed up and put into storage on a recent visit and my sister and I were back there emptying all the folders containing college work and bagging up the rubbish. The two of us were sat on my bed when I stumbled across a large brown envelope addressed to our mother. I pulled out the contents and… wham… the tears started. It was the care notes from her final days, Why they were in my room I don’t know.

Sniffing and apologising I looked over at my sister and she was doing exactly the same thing. That set me off more. Neither of us had even read the notes, it was just knowing what they were. Its not like this was a recent event. Mum passed over two decades ago. We both chuckled, sniffed, rubbed our eyes, got our emotion under control and in the very British way said ‘how stupid.’ Then got back to the task at hand.

Those notes got put on the book case for a little while as I felt guilty about putting them out for shredding/recycling. It took a deep breath and my big girl pants to empty the folder and throw them out. Mum wouldn’t have wanted us to keep them and I had no intention of reading them.

being hit by emotion when you least expect it.

The last things I was bagging up were some old clothes that had been found in the spare room wardrobe and my dinner and dance dress. I have not seen that dress in over thirty years. Wham… emotion explosion number two. Why? Mum made that dress for me. I can remember so clearly her cursing me for losing weight and her needing to take it in for the third time. I hugged that dress and looked at my sister who nodded in understanding with tears in her eyes.

As I sat here typing this up another ripple of emotion has washed over me and a few tears have escaped. That dress is now in storage on top of the box containing my wedding dress. It won’t get worn again (it won’t fit) but I’m not ready to let it go. Is it stupid? Possibly. Probably. It is the only tangible thing I have that my mum made. So yes the emotion which is attached is strong.

I have one more trip to make back to my family home. The last few boxes which need to be stored. Am I expecting another wave of emotion? I’m not sure. It felt strange seeing a for sale board outside. Thinking about it I don’t think I am. For one simple reason and some people will think that it is a harsh thing I am about to say but the heart of that house has been missing for a very long time. The family have gone their own ways. It’s no longer home. That is inside us wherever we are. Ex

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Does the medication work?

Does your medication work? That certainly is a question to ponder. I guess asking that can open a can of worms but hey lets do it. Now where should we start? We get a prescription and we know what the drug is supposed to do, help with or prevent. If the drug is for something simple… clearing up an infection. That is easy. Infection has gone. the drug did what it was prescribed to do. Happy days.

Some drugs you can see the work that they do. The swelling has gone down. The itching has stopped. Others the work is hidden but you can tell it is happening. The heart rate is right, the blood pressure lower. You no longer have palpitations. The dizzy spells have stopped. Sometimes you have to wait a while for the effects to become apparent. The dose may need a tweak or two to get it to work but what if it doesn’t?

We have had a few appointments recently. As is the way you get chatting to people. One comment surprised me. My husband was talking to a nurse who was conducting pre-admission tests. She spotted his tremor in his arm and asked if he has Parkinson’s and was he on medication. He said yes but I’m not sure its working. She replied ‘I don’t think it is for my Dad either.’

He has been on medication for months and it has been increased once but I can’t say I have seen any indication it makes a difference. Now obviously without it he could be worse. We don’t know that. My husband says he doesn’t feel like it is helping. In fact he has other problems that we are beginning to question if they are linked. So what do you do?

Does medication work. Can relaxation help

How long do you give a drug time to work? Time to make a difference? How many times do you up the dosage? When do you ask if there is an alternative? Each adjustment is then followed by a six month wait for the next appointment. That is a long time to wait for a drug to work. How many six month cycles does he have left until we get told, sorry there is nothing we can do? In that time we have been buffering, waiting for things to improve. Not fully living because it is not helping in the way they say it will.

The whole process feels like a barrel load of ‘how long is a bit of string’ questions mixed with a need for a crystal ball sprinkled with a handful of ‘what ifs.’ Should you trust the process? Keep your fingers crossed that suddenly the drug will work? I haven’t reached out to our Parkinson’s nurse as her last comment about ‘not being bothered to adjust our lives to fit the drug’ doesn’t fill me with confidence. We have another appointment soon so we need to decide what to do? Well I don’t because it is not my call to make.

Sometimes I don’t notice his tremor. I’m not sure if that is because I have got used to it. Other times it is so apparent. That is usually when he is stressed. I haven’t notice his lip tremble recently but he says he feels it more. Before this next appointment we are starting new medication for another issue that we have been waiting for for eighteen months. Will that work?

It would be nice to know what to do for the best. You can only go by advice and how you feel. A little improvement. A sign we are heading down the right path. Something would be nice. Lets keep our fingers crossed that something starts to work. Ex

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Its been a write off

Recently I have found it hard to write posts. Having written so many and scheduling them when I had the inspiration has been a blessing. So why has this happened? We have had appointments. Procedures. I’ve been taught to administer new medication via injection. I’m still working on my novels so its not like I have writers block.

I have sat and pondered. Tried to write a bit, then deleted it. My conclusion? I wasn’t going to be writing anything useful or interesting. Honestly I think outside factors were making me very flat and frustrated. Sure our usual hurdles were just as prevalent but they were being overshadowed by other areas of my life and you didn’t need me droning on. You have enough of your own problems.

The weather hasn’t been very inspirational. Such a British comment but I’ll own it. The wind and rain, although greatly needed, (the rain that is) does not make you want to write or wax lyrical about issues and put a positive spin on them. The weather has been causing havoc at the allotment. Potted trees have taken nose dives. Other peoples netting has been blown off. Newly planted saplings have been flatted. Then the recent extreme heat since this was typed. Its been brutal. Yet that is life.

Needing inspiration to write - looking for it at the allotment

So why am I now back at the keyboard. Something really silly. One of the big media platforms had an outage and I was scrolling through my phone looking for my password. Yes I know, it shouldn’t be on there. It took me a while to find it but I’m at that age things need to be written down. There on my note list was a blog idea I had forgotten about.

Now I did not go off and write that straight away, simply because it needed some consideration. But that prompt ‘dinner with famous people’ somehow made something in me click and I wanted to write. No idea why. It’s not like that subject has any reflection on health matters unless one of your dinner guests made a massive contribution to medical research. I should point out that blog could be a while in the making as I still don’t know who I would want at my table.

Have you ever found inspiration or motivation in a place you least expected it? A lot of the time I try and plod through things. Like you are wading knee deep in mud, hoping you don’t lose a boot. You make it through and then you face the other things that need your attention. I’ve had a conversation with someone in passing that made me have a light bulb moment. Some people have suggested things that have sparked the passion. Others have done nothing more that threaten to boot me up the butt.

So where ever you find that motivation run with it while it is there because we all have times when its hard to do the things we want to do, or at least do them with enthusiasm. Life is too short to do things without at least the occasion smile on your face and skip in your step (OK the skip might not actually be visible). The things we need to do should not always feel like the weight of the world is on your shoulders.

Wow that got a little deeper than I expected. Sorry, well actually no I’m not. Sometimes these things need to be voiced or in my case I need to write them. So if things are hard right now I hope inspiration comes your way soon. Like me you might find it when looking for something else. Now I am off to write some more. You have been warned. Ex

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Oops here is book two

So I’ve done it again. There is another book out there. This is the second in what I have called my ‘Just Me’ series. If you had asked me at the start of my writing journey about my book subjects this would not have even been a maybe on the the list. It was a suggestion that wouldn’t stop nagging me. It grew legs and ran on a journey to a destination that I was not expecting.

This one was easy to write. A journey back over certain parts of my life, the people who I have met and some events that made me laugh and roll my eyes in equal measure. Yes it was fun to reminisce and maybe I had rose tinted glasses at times but it also made me question a lot of things. Life, society and my own sanity and choices.

Some of the subjects might feel a little deep but it’s not intended to be. My editor commented it was like I was sat in the pub telling stories. I’ll take that. Hopefully it will come across like book one: with humour even if at times it is dark. Sadly there is nothing to learn from reading it. Sorry.

Getting the book finished was easy but once I had my proof in my hand I hit a wall of doubt. I considered pulling its publication. Things that have been said on other sites from authors. Recommendations for writing got me worried. When I read, I do it to escape. Just for the joy of it. I have found errors in books. Would I run straight to the author and tell them? No. If I didn’t like it I wouldn’t slate them online. We all have different tastes.

Book two - rats, stalkers & construction workers

Sadly people do that and they can be vicious, all from the safety of their laptop. Rip apart something that people have poured their heart and soul into, just because they don’t like it. So what, give the book away. Don’t finish it. Mention it in passing to your reading buddies but don’t be cruel online.

This book is based on my memories and experiences. Sure, they may be hazy after the time that has flown by. There are no names, not many places actually mentioned. A few people will recognise themselves and I am fully expecting their recollections to be different. Why? Simply as every story has two side. There is no malice in my tales. Just observations. questions and what ifs. Memories don’t always match. I get that when I reminisce with those closet to me.

So I ask if you read this book and you think I got it wrong, don’t slate me. Don’t message me and ask me to change it. This is my story written as my grey cells have stored it. It is done so move on. If it makes you smile and hopefully laugh then you were either part of the madness of that part of my life or you know me well enough to picture me living it.

Now I am at a writing crossroads. There are more books waiting to be published but which path do I take. There is another in this series with one more begging to be written. If I take the other road then I fear the wall of doubt will be even worse. As this book shows your actions can have a massive ripple effect. So keep that in mind or you might miss out on more ramblings from the madness of my mind. Do you want to risk it? Maybe you should. Ex

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Does anyone have a clue?

Can someone give me a clue? Devine intervention? A massive sign? No? OK in that case any chance someone can point me in the right direction and quickly because I need information. Information that seems to be lost somewhere in the pits of ‘nobody knows.’

I am at my wits end. You might have guess that already. Let me explain. That new consultant that we crossed paths with who arranged a scan and realised there was something that needed looking at. Well we went back and got the scan results. I will admit I didn’t have a clue what I was looking at but then I was peaking round the side of his screen. So it seems husbands back has deteriorated but we expected that.

Three options were laid before us. Physio – Lowry man (that will only make sense if you have read my book), spinal injections or surgery. There is no guarantee that the injections will prevent the need for surgery but it might delay it. I knew husbands choice. Lets go for door B. Within a matter of minutes we were given a day admission date and details for the insurance company. All good so far.

Two days later husband gets a call. They are supposed to reach out to me but from what husband said this person didn’t have a clue what they were doing. She starts asking for his back history, all of which I filled in via their online form which I was told we had to submit before the first consultation. I still have no clue what happens to that information as no one seems to get it.

Can I hide behind this door until someone has a clue what is going on

She then tells him he can’t have the procedure done and he needs to start the process again via the NHS. Deep breath and don’t swear. Then she says he can have it done but they will only do it under local because of his prior anaphylaxis and the fact he doesn’t have an epi-pen. I have tried to get him one but have been advised he isn’t allergic enough. Yet the allergy specialist said even a small dose will kill him before anyone would reach him. Again does anyone have a clue as to who is right here.

Then she tells him he has this aliment. No I don’t. You are taking this mediation so you have. The medication was prescribed for something different as it can be used for both and I doubled checked his medical notes and the diagnosis she says he had is not showing. The conversation then goes on about his need to fast. First it was yes he did, then at the end of the call, no he didn’t. By this point I had no clue. Hubby was confused as anything and I was even more frustrated.

After he relayed all the conversations. He had no idea. Should he take his tablets. Was he supposed to eat, was he not? He had no clue. I had no clue and the woman from the hospital well I don’t think she had any idea at all. What grated me most was the medication for his Parkinsons hadn’t even been mentioned. Because of the time of his admission what were we supposed to do about that?

So this morning I have been talking to the consultants secretary to get clarification. I now know what we are supposed to do but I feel sorry for the people who don’t have a clue or a full grasp on their situation. One call from a person who doesn’t have all the information and it can all go horribly wrong. No body needs that. Ex

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So much admin

Admin! That word never used to make me scream but at the moment it is being moved into the same bracket as ‘health and safety’ a certain telecommunications company and cold callers. Why? Simply because it is becoming frustrating and annoying.

I’ve always considered myself competent when it comes to admin. There is a lot of it in my job and I will admit that with the progression of technology some of that pressure has eased. The processes have become easier. Please do not think I am talking about AI because I am not. Software packages that have reduced my data entry are amazing. Yet for other parts of life the opposite seems to be true.

Recently after a GP appointment my husband was given a referral letter. Having gone through this process several times we waited for an appointment. Nothing. It now seems we have to take the referral and do the work to get the appointment. At what point was someone going to tell us this. More admin for me. Check out the possible consultants because his usual consultant has vanished. Check with the private insurance company that the one we pick is on their list. Make our choice, get it authorised, book the appointment.

Another clinic said he needed bloods and an X-ray. OK log on book the blood test, my job as husband can’t use a computer. Where has the paperwork for the X-ray been sent? Thankfully it only took a couple of calls to track that down and confirm it can been done during the same visit to the hospital for the bloods.

My response to admin

The paperwork I have in relation to my husband is behaving like that Gremlin who was fed after midnight. My current folder will now need to be split as it is busting at the seams. In that simple task is an admin dilemma. How do you decide which sections to group together? I know from experience which ever way I do it, the question I get asked will have the answer in the other file. We won’t mention it is information that should be held in his medical records. That is another gripe altogether.

For the appointment for the referral I think it best if I step up my admin and put together a specific folder as from experience usually a new consultant means a whole load of pain starting from scratch. Better I go armed with all the information as I know full well that lovely screen on his desk, linked to that big ole computer will not tell him anything relevant. I’m not sure it tells him anything correct.

It’s hard work, another ball that we shouldn’t really need to be juggling. I’m trying to figure out if these are problems due to people not doing their jobs properly, people not caring or the systems being upgraded ineffectively. Failsafe procedures not being put in place or perhaps this is just a way to reduce the figures.

Yes I sound cynical but I don’t understand why admin is being pushed onto the patient. How far will this go? Will we eventually be responsible for generating our own discharge papers? That might be beneficial as in my husbands case there never seems to be anyone to sign them.

I do fear for the people who are dire with paperwork. Perhaps we need to hire a PA when we get sick. I know that if the boot was on the other foot I would be doomed: husband is not an admin demon. His theory is shred it, we won’t need it. My suggestion is brush up on your office admin skills, you never know when you will need them. Just don’t ask me, I’m drowning under paperwork. Ex

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Is it wrong to expect the basics?

I some times wonder if I expect too much. I mean I think I’m only asking for the basics. Manners, curtesy, punctuality and people to do a proper job. The job they are there to do. And therein is the rub. That today seems to be too much to ask.

So after the debacle of being missed off the system upgrade which saw us waiting nearly a year for results. We needed to start the process again. Now those of you who have been with me since the start would have probably groaned and asked what happened. You would be right to. Only us. A sigh and an eye roll.

We did the long round trip to the hospital for bloods and X-rays so we could get back into the process of applying for funding. Then we get the phone call from the consultant. You need to come back. They didn’t do the all the blood tests required. Seriously? How? Why? You need to come in Monday… oh wait that is a bank holiday. It will have to be Wednesday before midday or we will need to start over.

Was it that the person didn’t take enough blood or was it the person who ran the tests didn’t do the right ones? Is expecting that to be right above the basics? I get that mistakes get made but reading and double checking for me is the basics of a process. Protocols should be in place to make sure this is the case.

Sod’s law there was another appointment on the Wednesday so we had to reschedule that and head off early to get to the hospital. We can’t book a blood test appointment as the earliest one is five weeks time. To queue jump we have to get to see the consultant between his appointments so he can talk to the phlebotomy department.

We get to the hospital and the consultant isn’t there. Lets hope he has done the basics and left details in the clinic so someone can help us out. Another consultant appears and gets the ball rolling. My husband laughs at me as I pay attention. Being nosy some might call it. A conversation caught my ear. A senior member of nursing staff offered to take us into a clinic and draw the bloods so we didn’t have to wait about as the blood department would need to squeeze us in. He said no.

I was not happy. I couldn’t say anything as I was listening to a conversation that was not meant for my ears. The consultant said the department had missed off the two main tests so they needed to get it right. Was that about budgets, costing and funds? Possibly. The red tape of the hospital above the basics expected by the patient. Frustrating for sure.

Luckily they took the bloods and we were on our way home in just under an hour but do we think the basics will be covered again this time. No. husband said the paperwork was the same from last time. So we need to keep our fingers crossed that someone does their job properly. Maybe it is delaying tactics. I promise if there is a problem with this lot of bloods and we get called back again the air will be blue. I’m only asking for the basics and that isn’t too much to ask… is it? Ex

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New Consultant

I wonder how you feel about having a new consultant? If you are in the position to choose do you stick with who you know or do you shake it up and try a new opinion. I suppose it can come down to more than one factor. Personal choice. Prior experience. Circumstances. Even simple personal interaction: do you and the consultant gel? Some times that choice is out of your hands and you have no option than to roll with it.

On the whole, me personally, I like consistency. The security and comfort of knowing who I am dealing with especially if it’s a consultant who I feel has helped us move our situation forward. It also feels like there has been an investment of time building up the relationship. Setting the foundations for the care plan, you know the long term path you are going to be on for this particular health issue.

The consultant who you have dealt with numerous times before should know your history. The allergies that can kill you. The pain relief that is more effective for you. Drugs which make you sick. Your quirks, fears and the avenues you have tried which have not been successful. All of this makes your appointments more productive and less stressful.

A new consultant to me feels like a massive step back. Well you are starting a relationship from square one. They don’t know your history. Prior surgeries. When they ask details about the prior procedure and you aren’t totally sure but the doctor that had been sat in the chair before knew exactly because he had preformed the operation.

Sure we have been in the position when appointments with one consultant felt like a constant circle of tests, new drugs then radio silence to then have to start again. In that position we were close to asking for someone new. Luckily that happened without our input and the person who took over we had seen in the clinic previously so it didn’t feel like a complete reset.

So here we were needing to start a process again. An issue that has been ongoing for numerous years was back. Two prior surgeries had seen the problem, I won’t say vanish, but be manageable. However now things were getting bad again. The last time this happened the old consultant who had carried out the last operation assured us nothing had changed but we weren’t convinced. We didn’t ask for a second opinion but found a way to manage. Now that wasn’t an option.

A GP referral and authorisation from the private medical insurance had us facing the decision. Do we stick with what we know or do we start from scratch. As it happened the option was taken from us. The old consultant wasn’t on the list of people we could see. We were given two names and one wasn’t available. Door number two it was.

We walked into the appointment, a few questions later and less than a minute of ‘can you do this.’ and the consultant sits down and says you are in a bad way we need to see what is going on in there. Wow… no barrage of questions. No detailed history. Simple observation of the patients movement, posture and wincing and we have taken a bigger step forward than I was expecting. He writes on a piece of paper. Go and book this test, then book this appointment. I want to see you back here in two weeks.

So now we have a short wait to find out what is going on. Its a little more than two weeks as we couldn’t get the scan. Here’s hoping he keeps the momentum up. Ex