I know I haven’t been writing on this blog for some time now but I have been writing!

I have just been concentrating on the positive things that I need to achieve and want and am able to do. I have been collecting my thoughts, spending time with family and friends, dreaming, and fighting yet another infection!

I went to see my consultant and in spite of the infections they are hoping to do the operation to re-repair my forehead, only this time they will use vascular surgery and take veins and skin from my forearm and I am positive that this will work.

Although I can now drink my coffee through the hole, I have threatened to appear on Britain’s Got Talent with a stream of multicoloured smoke if I don’t get fixed soon.

At this moment in time I am awaiting a date to be co-ordinated for the surgery to take place as it has to fit in with all of my consultants.

I am alive! I am positive! I am grateful!

Thank you.

As you may have noticed, I haven’t written much over the past few weeks.

I just haven’t had the dead space.

My car broke down the Friday we were supposed to drive my beautiful, if completely scatty, Aura Dora dog back from Spain and we were repatriated through military airspace to combat the volcanic ash cloud last Tuesday.

On top of that I have been put back on antibiotics as my head became swollen and my wound festered and I have now secured an appointment with my ENT consultant for the morning.

Instead of harbouring on aobut bad luck I decided to leave writing anything until I could be a little positive and today is my beautiful sister’s birthday and that makes me happy.

I am so grateful for the support of my family and my sister who is so talented has helped me and helped me over the past years.

Happy Birthday to my wonderful friend. I love you.

Dear Sir or Madam:

I tried to make an appointment this morning to see a doctor urgently as I have been feeling so dizzy everyday and it seems to be getting worse.

If you choose to help me then please do quickly. I will write for my right to appeal the decision by the DLA tomorrow and send it special delivery with a copy of this letter included. If you chose not to help me then please take this letter as a formal complaint.

I do not know if this dizziness is related to my head or my PTSD but I think I deserve to be seen by someone who has an incling about what I am going through. 1 doctor has left, 1 had an appointment on 23 April and 1 sometime in May.

I had not felt that I was able to come to see anyone at your surgery as I have recently received my letter of refusal from the DLA who say that they contacted you regarding my condition. As my dizziness only began after this news which is crippling when you have been as ill as I have I presume that it is from my PTSD which will have returned because of this devastating news. If your surgery wrote this down then you must take responsibility for the outcome. I can not and will not be more ill than I am and have been.

As I think that having 1/3 of my skull removed in July this year, my veins and tissue removed from my arm, MSSA, Pseudomonas and Post Traumatic Stress Disorder is enough to qualify I am very angry by not being supported by this surgery. I have been practically housebound for 9 months. I refuse to be more ill than I am and lie about my good days – they are too precious to me.

I was too angry to even bother to come and see you.

This morning I received a call from my life assurance policy holder who said they could extend my life cover years if I go through the channels including yourselves again.

It was then that I knew that whoever filled in the form for the DLA would also fill in the form for life cover. I also know that I would not get extra life cover because of my condition and this has to be noted. As I have not been told that I can be fixed and that I will survive I should have been given more support anyway. The best I have got when I ask my consultants if I will live is ‘I hope so’. How would the form have been filled in if I had a more regular and less controversial condition that was as life threatening?

I am so distraught that I can not talk and have been on the verge of crying everyday and every hour for the last 2 weeks. My dizziness is getting worse and it feels as if my body has been cut into 5 different sections and they are all rolling in different directions. I feel so drunk from dizziness that I have not driven. In fact I have only felt well enough to drive about 5 times in total since surgery.

If the best I can do is write to the surgery that is supposed to be my first point of care then so be it. I am too tired now but not only is the balance of my life in your hands but that of my son and the rest of my famly.

I am living on my sons inheritance, I am not on any benefits, I can’t work with a one inch piece of rotting bone poking through my head and the chance of infection returning. All I can do is pray that this will all be but a memory after the next lot of surgery and recovery.

Because of my honesty on my life insurance which was taken out after my initial surgery they will argue that my condition is related to sinusitis and osteomyelitis and my son will chance receiving nothing. I know this is not true because I was told that I had to have the operation in order to take away the infected bone from the initial condition and one of my surgeons told me that this infection was completely different. Both my ENT and Plastic surgeons have told me about the pseudomonas and my family were with me at the time and yet it is not written down in my notes once. I want it on record that should I die that it is not from the original conditions of sinusitis and osteomyelitis (one of my reasons for having it removed was so that it could be taken off my life cover for my son).

I have battled MSSA and Pseudomonas following incubation from my surgery on 6th August. I have also grown strep and diptheroids on my wound. Each one of these bacteria can be fatal.

I have been through so many different types of antibiotics because they did not work i.e. resistant.

I had a different surgery to one that I was told. I was supposed to have my brain moved into the hole between the front of the reconstructed skull and this was unable to be done as the dura has become calcified. Yet I still had the sinus obliterated and this is where the infection occured. If the drainage had been left the chance of the infections being able to take such a hold on me would have not have been there as they would have just drained out through the fantastic drainage for which I have had to have 2 follow up operations to correct.

I am scheduled to have reconstruction surgery sometime in July to reduce the risk of infection and if the infection has not returned.

I have been taken off of antibiotics because I was so ill on them that I was in constant pain and was very close to being incontinent. This was only a few weeks ago and so for only 3 weeks since the beginning of August can be classified as good and I am not due to be better for another 6 months at least and therefore you could help me still.

The surgeons and Infection Control do not know if the infection will return. If this would have been in my foot it would have been amputated.

My family have been supportive and incredible throughout every year since 2002. This has an overwhelming bearing on how they live their lives. My father, my mother, my sister and now my boyfriend now stay with me to help but because we do not shout we get pushed aside.

I am appealing for the help that I am entitled to.

Yours sincerely,

Alexandra Jones

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
—–

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 : – ).

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!

I have been away for a weekend with friends.

Not something new or lavish. Nothing too exciting or extreme. For me it was the start of normality again though and there is nothing quite as good as normal when you have been living in a cocoon of infectious disease and uncertainty for so long and for that I am truely grateful.

Just to be able to have conversations with friends instead of a barrage of nurses, doctors and consultants who look at you with their head slightly leaning to one side with that ‘there, there’ look plastered all over their faces which roughly translates as we don’t have a clue how this is going to turn out for you but we are trying to be decisive.

I still have an affinity with lavatories – I never like to be far away from a good standard of ablution facilities but the other day I walked fast enough to overtake a pensioner with a walking stick! How cool is that.

I have visions of me partaking in the 2012 Olympics in the hidden disability hurdles which will be under the ‘you can’t run but we will certainly try to hide the fact that it was our fault’ section.

It is only now that I realise that I really have no idea what was wrong with me as it is so hard for anyone to give you straight answers nowadays for the fear that you will sue them and as I mentioned before this is the reason I am writing this all down. I want other people to realise that they are not alone.

Although the MSSA infection is supposed to be the better of the Staph infections and in spite of the fact that I was catagorically told that I had a ’suspected’ pseudomonas infection, it was because of the good standing that MSSA has in relation to all of these killer superbugs that MSSA is the only infection that has actually been written down in my notes.

I also have been able to grow Strep and what is euphemously written down as Diptheroids and converted to normal skin flora from the open wound on my forehead. Each of these bacteria are killers if they get too much of a hold on your body and as I start to feel ‘normal’ again I realise that I am truely grateful to be alive and although I obviously am a superwoman that does not make me forget to count my blessings when I have what everyone else would consider a boring old day.

To me it is a kick in the teeth to infection and another point in my favour.

How lucky am I to be alive?

I am finding it increasingly difficult to write at the moment.

Fear mainly, along with some anger mixed with the usual PMT emotions.

I am on day six of living without antibiotics. I am not sure how long I need to go before I will be declared bug-ger free but I know that it will be at least 6 weeks of feeling like this.

Scared of every pain and swelling. Each morning I wake up and (after being incredibly thankful that I have woken up) I touch my forehead to make sure that it isn’t unduly swollen and then when I am brave enough I take off the silver plaster that is covering the wound on my head to see if this is clear and without any untoward signs of infection.

I don’t know why but although I am feeling stronger day by day I am unbelievably emotional this time.

I have lived with infection for 8 years but until the reconstruction and devastating disease that ensued I have had to deal with a whole new approach.

I was used to losing tiny bits of my forehead and for the 18 months leading up to the reconstruction I would say that I was the healthiest I have been in years and with that came a confidence to deal with any small infections in the same manner that I had been dealing with them over the previous years.

But this is different. This time the infection got hold of the whole top part of my head and so I have to get used to whatever comes and I think that is the crux of the matter – I have no idea what is to come.

Although some of my aches and pains are subsiding, I still find I need painkillers to get myself moving without looking like the hunchback of Notre Dame in the morning.

My tummy, thank goodness, seems to be responding well to living without the constant barage of domestos that it has had to deal with over the last 7 months and I truely grateful for that.

I have in turn replaced this with a multitude of vitamins and minerals to bring my iron count up and cholesterol reducing supplements to bring my quite alarmingly high LDL levels down.

There is one good thing about being ill. You find out all the other hidden problems that you have through the multitude of tests and consultations and hopefully you can deal with these before they too take a hold on your body.

I have felt too miserable to write at all over the last week.

Not only physically as I have been so weepy and down I have found it hard to even wonder whether or not anything was worth it.

I think because I have been so close to death so often I expect to feel the same happy feeling that I have cheated it and am happy to be alive every time.

After this last operation, I have honestly wondered what life is all about. My mother eventually got an urgent appointment at the GP on Thursday as after the splints were removed from my nose I was still miserable and in pain. I have just phoned the surgery to find out my blood test results but my doctor is not in and has not been able to decipher them yet so I have to call back tomorrow between 11 and 12.

It is such hard work being ill. I went to the hospital last Tuesday to have said splints removed and although being able to breath again was wonderful I was surprised to hear that I wasn’t being taken off the antibiotics as I was informed last week.

My consultant proceeded to say that I should ask for another prescription from my GP ‘they usually prescribe these for you, don’t they?’ to which I replied no, never this prescription, I got it from Infection Control at this hospital. He then went on to write a script for the GP to prescribe and asked me what I was taking and what strength. After looking through the drug book I was sent off to put an urgent request in at my local surgery.

I got a phone call to collect my prescription about 20 minutes later and then had to traipse half way around Fulham, feeling in pain and in the icy rain, going from pharmacy to pharmacy only to find out that one of my particular antibiotics (Rifampicin) is not held in pharmacies as it is usually only prescribed in hospitals.

It was therefore ordered and I had a period of two and a half days without medication.

When I finally received my prescription I checked it against my normal prescription and found out that the dosage was wrong and had to go through the process of re-ordering again through my GP.

Due to all of this confusion I missed an appointment at infection control on Wednesday and now have to see them this week to find out what??????

I have this minute just received a phone call, almost a week later to say that they (My consultants) see no reason why I shouldn’t come off the antibiotics. Really convincing heh? Not you are infection free and you do not need them anymore. Well, at least I have been reliably informed that they have at least discussed this this time and that someone is taking responsibility for my care.

So now I have to be brave and after collecting my hard fought after correct prescription have to see whether I can live without the antibiotics that my body have relied on to fight the MSSA and suspected pseudomonas for the past six months.

Wish me luck.

As I sit here in bed AGAIN, watching Saturday Kitchen after having said goodbye to my son and boyfriend who have gone to collect his children for half-term I am feeling a little bit down again.

Having grown up in South Africa, I woke up this morning feeling like I was there and that the sunlight was coming through the curtains. I felt free, at peace and happy and then came the reality.

Having been on various concoctions of antibiotics over the past 6 months, it has taken a really long time to recover from this operation and I just feel wiped out. Although the aneasthetic and steroids have made my now usual pain more bearable this week, I have had to deal with incredible lethargy and pain in my face. Behind my eyes, in my upper jaw and my middle teeth. I have spent most of the week in bed as I have been that weak and dizzy that just having a shower and getting dressed (achieved twice as of yet) has been really exhausting.

I haven’t been told what the plan is for the reconstruction of my forehead is, but as the swelling goes down I am becoming increasingly aware that the bone above my nose has practically disappeared. Whether they took some of this for samples during the operation, whether it is just melting away from lack of blood supply or just the fact that now I have better drainage, the swelling has dissipated so much that the reality is now on show.

Anyway, each day is a little better and I am feeling that maybe, just maybe I might be able to feel that African sunshine on my face again one day.

As I told you yesterday I am not in a good mood.

Splints up your nose on either side of your septum and sewn into the middle of it that leaves you feeling as if you have just contracted the mother of all colds. So speaking to someone face to face leaves you open to ridicule and the temptation to smack some of my family members has been all too close for comfort. So when the registrar called me after requesting further interest it left me having to muster all my control in order to try to be understood.

He told me again that the operation had gone really well and that there was no visable sign of infection. This is all very well and great news but doesn’t necessarily mean that I am infection free but that they will make a decision as to whether or not I should stay on my concoction of domestos antibiotics.

I really want to come off all of my medication but also know the risks and the fact that I still have bone popping through the front of my head is something that will need to be addressed.

The question is do I come off the antibiotics and hopefully remain infection free and get some of my dignity back and maybe get rid of some of the pain or will they leave me on the antibiotics until they have thought of a way forward.

The registrar couldn’t answer that so I suppose I will have to wait until next Tuesday to see what decisions will be made and just go with the flow.

Lots of praying, lots of trying to be optimistic and thinking about looking forward to something fantastic but finding it increasingly hard to do whilst feeling the most miserable both physically and mentally than I have in a long time.