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 : – ).

I got it!

Only £54 for a 7 day trip. Not too much really but when you consider it is the same as the flight it is a bit extortionate and because I want my son to be covered just in case he needs to be repatriated with me I have to pay the same again for him. So that means a grand total of over £100. They must love me.

I am only going to Spain and this will only cover me for public health in Spain. No private healthcare for me. I still have to carry my NHS card and therefore I am completely confused and becoming poorer!

But that is ok, at least I have the chance to get away after 9 months of living with disease, day in, day out. I will get to see the sea and the sunshine. Hopefully I will be able to relax a bit before the next round of operations begin.

Just hope that all goes well tomorrow with my smiley plastics consultants – As it is my birthday I may even butter them up with some doughnuts or a Dora the Explorer cake.

I know, I know – Fad diet nutter!

And sometimes that is true, but the more I feel for myself how wheat hurts (and I mean, really hurts) me the more I feel that this protein fuelled, low carb (my true love) way of life helps me.

A FB friend recently started and is shedding multitude. I, on the other hand, was veering towards it by natural de-selection. And so, it is with great interest that I have come accross a multitude of personal MRSA websites that feel the same way as I do.

I am not going to go into detail now but will try to put something together that I can truely understand.

Amazing.

After the long awaited and yet fearfully anticipated forehead reconstruction I recovered quite quickly and once my new forehead was revealed I felt over the moon.

It was as if parts of me had been returned – not only physically but within me there was the long forgotten confidence of a rather good – looking girl who had a career, a social life, friends and happiness. Of a girl that thought nothing of singing in front of hundreds of people. Of a girl who would go against the law of apartheid and teach drama to children in the local townships just to see the joy on their faces. Of a girl who give up any chance of a university degree because of her unfailing belief that what she was doing was morally right. Of a girl that could dance until the sunrise and laugh until she cried.

Everything was immediately achievable and the recent past where I had become withdrawn, under-achieving, reclusive and very bad at social situation dissapeared. I had the privalege of being able to step into my past and gain wonders.

Although I was dealing with having 40 odd staples and bald patches of hair and, of course, the sensation of having a rather tight hat which I was unable to take off, I was given, quite literally and more importantly psychologically, a new lease on life.

Little did I know that it was not to last.

I am not necessarily unhappy that I had this experience because it did make me realise how inhibited I had become. After being diagnosed with Post Traumatic Stress Disorder (PTSD) I knew that I had a name to my problem but I am a person to deal with something and so I did and had no idea how much of a hold it had on my life.

I had freedom and peace and the ability to relax for a whole week or so. I could look forward and make plans, smile and immediately mean it without secretly gritting my teeth. The little things that would have upset my day were temporarily nothings.

You see, I have had quite a bit of training in drama and I realised that I had been putting it to good use.

Anyway, after the swaddling headress was undone, the staples removed and the matted hair tidied as well as could be expected I was delighted, confident and able and willing to conquer the world again. I had reasons to live. I had my life back.

Although we all noticed that there was a small area of air between the skin and bone graft at one of the edges, I was reassured that this would subside and eventually bond.

Unfortunately this did not happen.

Over the weeks it stayed and after the swelling that caused my face to look very much like a helium balloon of Dora the Explorer went down it became a little red dot.

This little red dot started to raise alarm bells with the consultants and because they were used to dealing with this latest form of infection and said that it would probably errupt.

It took a couple of months to break through and different types of antibiotics, again unfortunately, did nothing to stop the eventual hole in my head appearing.

I had dealt with dents before but not a wound and although I was too ill to be immediately disconcerted with the disfiguration effect I was still optimistic about the outcome.

As the weeks passed the hole became bigger and the wound opened to expose the bone and soft tissue. Every time I went to a consultant they acknowledged this but I was still optimistic.

It was only at my last visit to my wonderful ENT surgeon that I realised that I was going to have to deal with a lot more than just a skin graft.

He started talking about vascular stuff! I know the bone that is exposed is a bit rubbish, but I am still none the wiser as to how much of this bone is rubbish as almost the whole of my forehead is either bone graft or titanium.

I received the follow up letter from Infection Control stating that they thought that it was the best course of action to come off the antibiotics as they were worried that they would, in turn, cause more problems but they could not be sure that they had eradicated the infection. I have an open door policy in place!

I know that in most cases of raging infection and when that infection is on the site of a foreign body, in my case the titanium mesh, that the foreign body is removed before they start antibiotic therapy as there is a good chance that the infection is deep within it.

As I get better and better within myself, the hole gets larger and larger. Hurting and pulling whenever I turn in bed. There everytime I look in the mirror. It is now almost one inch in diameter and that is the bit that is exposed. The bone is separating and splintering on one side. There is a deep rooted fear that this could just keep getting bigger.

The plasters that I use are no longer covering the area and you can see an obvious defect. I am far too self-conscious to look at it more than once a day when I change the plaster. I have not had a swab for months.

Although I feel fantastic today, I am aware that on the 25th (which is my 39th birthday) I have an appointment with my wonderful, smiley plastics consultant and his team.

He will let me know what he saw in the operation on the 8th February. He will either tell me the plan or give me some ideas. Half of me wants them to include me in those options, the other half just want them to fix it.

Most importantly I just want it to go away. I would love to run but I have no option of that. The hole in my head is getting bigger and the silver plasters don’t!

If I had been diagnosed with HIV, I would get disability and a very good long term prognosis.

If I had been diagnosed as Autistic, I would get a blue badge with no worries.

If I had been diagnosed as having arthritis I would been given a car.

If I had cancer I would be given disability with a percentage of how many people survive from the situation at hand. I would hold on to the part that was positive.

Not one of my consultants has been able to tell me that I will live. The most optimistic they have been is to say that ‘they hope so’.

So why the hell do I keep getting treated as if I am a thief.

Why when you are so ill for so long do you have to fight the system when you need it the most.

I am decided. I am going to confront the person who put their name on the letter and make them look at my head.

I have had enough – I pay £115 for 1 weeks insurance for a pre- existing medical condition, one of my consultants tell me that the infection I have now is different from the infection that had been CUT OUT of my head, the infections that I have been told I have and those that I have seen written down are MSSA, pseudomonas, diptheroids, strep all hospital bugs and in 8 years of infection never mentioned. Yet I have sinusitis written down instead. This would invalidate my assurance and I know that it is untrue. It is just a euphamistic way to take the blame from nosocomial (hospital acquired) infections. I can not afford for this to happen. I have paid my way and my son deserves the pay out if, because of listening to everyone else I am not around to care for him. In the meantime I am spending all that is left of his meager inheritance on life because the Department of Work and Pensions say that I am not ill enough – I have legs.

Forgive me for anything that I do from now on.

Watch this space. You want to start – I am game.

I have just received the news that I was expecting. The ‘we don’t think you are ill note from the Department of Work and Pensions about my claim for Disability Living Allowance (DLA). Stating that they made their decision based on my honesty, every piece of documentation and scans from 2 hospitals, 4 consultants, 2 nursing agencies and the reliable statement of a GP who won’t even write me a letter to travel or prescription as they are too scared! I am fuming but not so much for myself as I expected this much from the pen pushing police but how long do really ill people have to suffer because of the rules that are supposed to help them and not those who are scamming. I nearly died last year and when my mother phoned to inform them that I was in hospital they just said that they could revoke any decision. It is now obvious that people are dying without the help that they deserve.

I am going straight to appeal and going to show them my head. I want them to know that their system isn’t working and I am very tempted to go to the press to show exactly how you can get pushed out so slowly but so surely that if you are not strong enough it doesn’t bear thinking about.

I don’t want to be worse than I am – I want to get better – I certainly don’t need this shit. PTSD (Post Traumatic Stress Disorder) gets straight back in there along with PMT, political rage and God help me if I got in the car right now.

I love the stuff – Sudafed is it’s common name and it has helped me through some rough times over the past few years let me tell you.

So because of some bad guys who use it to make some hard core drugs I am going to have to suffer.

No longer is it manufactured in 12 hours slow release so I have to take the full dose and it makes me giddy.

I will explain.

As you know I have had sinus problems for some time, couple that with infection and I am left with a gaping hole in my head.

So although I always had a theory that when I was feeling infected the pseudoephedrine would help I can actually see what it does now through the hole.

If I leave my wound and do not take any medication whatsoever my wound becomes encrusted and further damage to the soft tissue (skin) occurs and yet when I take pseudoepherdrine it inhibits the mucous and I am left with a neat and tidy hole instead.

So my question is why, oh why, do I have to suffer because of a few?

I am really cross as I know that I can get the 12 hour release in Europe but am unable to even get it on prescription in the UK.

I know that constant use stops its effectiveness but I have used it when needed for the past 8 years and can honestly say that it takes down any swelling and enables me to have an almost normal day when I have an infection.

I have seen it. I have felt it.

Why do the drug companies and governments not ask those who suffer what the benefits are before they bow down to pressure to be politically correct.

Those who make illegal drugs are only going to find something else but how long will it be before I am able to have something that is as effective and has gone through the lengthly drug agency procedures and tests.

I know it has saved me a few times but am now even more uncertain about my future.

Come on guys – give those of us that are trying a chance.

I have got a freedom pass!

Not a disability or pensioner pass as you might think but a letter from my consultant saying that my condition is stable and that I am fit for travel.

Super dooper, fantastic and all my dreams come true in three little sentences.

I have booked a week in Spain over Easter and now I only have the small but crucial job of finding a travel insurance provider that will cover me for this short escape.

I have had travel insurance for my previous condition before but it cost me over £300 a year and then, when I needed to claim for stolen luggage from a hijack attempt (another story) it took almost 3 years!

So I shall begin my hunt for an insurance company to cover all scenarios and eventualities and let you know the outcome.

As I have mentioned before I have been given the contact details for companies that cover cancer and other conditions that are more infamous but from previous experience it is really difficult to find a helpful travel insurance package for pre-existing medical conditions that don’t come with their own tick box or notoriety press coverage.

Wish me luck as I want to become an escape artist for the first time in 9 months.

On Friday morning I actually noticed that one of the corners of my now very pronounced hole was leaving residence.

Yes, there is a little bit of bone that is protruding and on examination my ENT surgeon pronounced that it was indeed bone that I was looking at on a daily basis the only problem being is that it is not very good bone!!!

As I was taking the opportunity to sit in the patch of garden that was being shown a little sunshine this morning I was contemplating the leper colony that was once an island off of Greece and thinking that if I have to deal with a much larger facial deformity than I have dealt with over the past 9 years I would rather face up to this in a warmer and more inclusive environment rather than the cold and very unforgiving UK.

I could still be of benefit in a comforting environment. I could do chores or take the place of a working child in a 3rd world country.

As I have had do deal with the social system based in the UK for so long and been offered the social care system that personally holds no benefit to me mentally whatsoever I am contemplating starting an exchange programme.

Anyone want to join? I will take the place of a 3rd world child in a factory environment and they would be able to benefit from an education in the UK. The only problem being is that they would have to deal with the problems associated with growing up here and to be honest – if I am thinking their lifestyle is better what on earth could I do to encourage them to think that they would be better off here?

Just a thought.

So I went to see my ENT surgeon on Friday.

I have been off the antibiotics for nearly 3 weeks and so on that note everything is looking good.

There is a problem though. The bone graft under the titanium plate which is almost the size of my forehead is rubbish. It doesn’t have a good blood suppl and has therefore not taken very well and, in turn, it is causing the hole in the skin to get larger.

And so he spoke rapidly about me going to be centre of discussion at their multidisciplinary meetings so that they can all discuss what they are going to do with me.

Frontal bone flap, skin grafts blah, blah, blah!

I just get more complicated as this story unfolds.

My ENT surgeon told me that he often speaks to my plastics consultant and whilst they have conversations regarding world politics, the state of finance, they inevitably turn the conversation around to me!

Needless to say I am going to have to go through another almighty operation but at least I am alive to do it after seemingly beating MSSA, pseudomonas and strep infections to this point.

I spent yesterday and the rest of Friday dealing with my PTSD in its angry phase. Hating the world and feeling as though I had consumed a bottle of wine whilst watching people brush past me all being normal.

l even tried to do ‘normal’ myself and sit and have coffee and a cake without hatred wanting to punch every living soul (including dive bombing pigeons).

Needless to say – PTSD and the pigeons won!