Firstly, I must be brave enough, I must be brave enough – mantra for the day.

So what should I ask my consultant today?

I will write this down as I think and this list is never exhaustive and never enough as I have learnt from past experience. I almost always have a list and am almost always never brave enough to ask everything on it.

I nearly always take someone with me for a couple of reasons. One I can’t remember everything they say and two, I need back up!

I always have a smile on my face (it is my version of a nervous twitch!) and therefore everyone assumes that I am the happiest person and the most stupid person and the most naieve person and the most weak person just waiting to hang onto every word that they say as Gospel.

I love every single one of the people I see just because I am still here and, regardless of what has happened, that is most important to me. The thing is I also have to listen to them all individually contradict each other, in fact, I have had to a couple of them fighting in front of me and therefore I realise that although each and everyone of them are doing their best that perhaps they are not always right.

You see, when you are incredibly vulnerable, you become reliant on these people and you have to trust them. The same, I am afraid, does not happen in reverse.

I have to take what they say in the 10 minute consultation that I have waited hours for in the waiting room and usually weeks (sometimes months) for in my head and live with it.

I don’t get to go away from what they tell me. I don’t get to go home, relax and think about other more wonderful things over a glass of wine. I have to live with and try to make sense of it until my next consultation.

I do try my best to be optimistic but sometimes I feel the raging bull appear as if by magic and not only do I have to suffer but my poor family have to deal with it too.

And so as I sit here my mind becomes blank and all the questions that I have been ruminating on over the past few weeks disappear. I shall go and have a coffee and get on with my morning. I shall come back to this and write the questions down when I think of them
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I had the last operation to cut out any residual infected or necrotic bone from the original osteomyelitis because my forehead was so thin. I had never been diagnosed with MSSA or pseudomonas before and the disease had never gone through the skin and caused a wound, in eight years. So this is definately a different infection that was (on the balance of probabilities seeing as I couldn’t have got up there myself and put pseudomonas an HCAI or found in the soil or MSSA for which I am constantly being swabbed for) caught during surgery. Right?

Just because I now know that it failed because of infection I want to ask why the operation that I went in to have was different to the one I came out with.

I was told that I needed the operation (by neurosurgeon). It was not for cosmetic reasons. I was told the plan was to give me a cranialization whereby the cut would be over the top of my head from ear to ear and that they would take the top slice of a part of my skull at the back (we have two slices, a bit like a sandwich!) and fill the hole left by taking the necessary part of my forehead away (should have asked to keep this for the grandkids!). Bone was better but I am aware that you had a piece of titanium mesh at the ready just in case. You were going to pull my brain forward and stitch it into place in order that there was no gap between my brains’ dura and the new skull and I was getting the last piece of necrotic bone from the back of my frontal sinus taken away for this to happen and that the wonderful drainage holes (that my fantastic ENT surgeon had given to me along with the best time in frequent years) would be blocked in order that the whole unit (my skull with brain inside) would be closed to infection.

Why then did you take a (double) piece of very good bone above my hairline and replace my forehead with that and the good space with titanium?

I know that the back of my sinus you found to be very tough and calcified (almost bony) and therefore were unable to move it. So why, oh why, did you block up my fantastic sinus drainage????

It left an empty enclosed gap just waiting for an infection to happen and was exactly why you said you couldn’t leave my brain where it was in the first place!

Why was I moved the (next? – sorry morphine assisted forgetfulness) day following my operation from an open ward to a side room after one of the nurses whispered to me that I had an infection?

Why was I told that one of the elderly patients in the shared room had C-Dificile?

Why was the shared ward then deep cleansed?

What infections have had to be dealt with since then?

If you suspected pseudomonas why hasn’t that been documented?

Why did I have to wait so long until I was sent to Infection Control and people started monitoring my blood count?

I was at home on Flucloxacillin for 3 weeks post being in hospital on the same plus more antibiotics – why was I not blood-tested at all during this time until I was so sick that the nurses (who were giving me the antibiotics 4 times a day) refused to medicate me and sent me to A&E where I was given an ECG as I was getting major trachicardia (heart racing to a techno beat) and blood test which stated that my CRP was over 30 (the normal rate is below 5 and even when I looked like the Dora the Explorer helium balloon was still low). Only then was I put on different antibiotics (as the Fluclox obiously was not working i.e. resistant to the bug I had)?

Why was the Picc line that I had inserted not monitored correctly? I was unable to walk and talk at the same time and out of breath constantly from October until January and after it had been pulled out of my heart by 6 centimetres. I was told by the nursing team who had been told by the plastics team that you were confident that I was not having any of these symptoms from the picc line and left a message on my phone to tell me so even though I hadn’t seen anybody about it.

When is MSSA re-classified as MRSA? I went through many different types of antibiotics that didn’t work (is that not resistant?).

Out of the whole reconstructed area how much is salvageable?

I can see that on one side of the open wound the bone and skin is coming away does that mean that the hole around it has a good blood supply and that I am dealing with an inch wide space or is it the whole of the area (and I am scared to ask – more?) is damaged?

I understand that you can’t graft skin over dead bone and into a space that is not there but what is the plan now?

Why does everyone keep referring to problems when that part has been dealt with (again my ENT surgeon has had to reopen and redo his last wonderful job and therefore fixed the sinus bit) and we are now dealing with a hole caused by an infection called ……………. (please write them all here!)

If you are not honest and don’t write the infection down it may affect any life insurance that I was honest enough to admit that I had previously on which had said that my brain tumour had been removed, suffered recurrent sinusitis and osteomyelitis and which was the most pressing reason for me to go for the reconstruction in the first place – please be honest as I know this is different I have been told that!

The MSSA/MRSA/Pseudomonas/C-Dif (please delete as appropriate) infection/s that I have – can they be completely eradicated.

These are just some of the more complicated questions that I would really like answered but I will probably just go in and smile : – ).