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.

At first I was afraid, I was petrified
Kept thinking how I would get through with these bugs inside
But I spent oh so many nights knowing how you did me wrong
And I grew strong
And I learnt how to carry on.

If you come back
from that nasty place
I’ll just defend myself with medicine,
With dignity and grace
I will arm myself with muti
Antib’s will be my key
If you thought for just one minute
You’d be back to bother me

Go on now go
Get out the door
Just turn around now
Your just not welcome anymore

You were the one who tried so hard to make me die
I used to cry
But now I hold my head up high
And you see me somebody new
I’m not that chained up little person
I’m here in spite of you
I’m looking forward to my life
Without you in my sight
I will survive
I will survive

It took all the strength I had not to fall apart
I used all that stregth to pray to God with all my heart
I have children to defend I will fight you to the end
I will succeed
There are things I feel I need
to do and see, to love and feel
I have a legacy to leave and you don’t show in that deal
I have lots to say and do
I will so get rid of you
Just say Goodbye
No, don’t even think to try

Go on now go
Walk out that door
We all we beat you
Get rid of all your standing for

You were the one to hurt my family the most
I thought I’d die I will no longer be your host
You will see me
somebody new
I’ll find some natural aided way that I can combat you
I will not be alone
My life you will not own
I will survive
I will survive

Yay heh!

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 : – ).

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!

After going for counselling and therapy and serotonin reuptake (anti-depressant) intake, seeing psychiatrists, psychologists and neuro-psychs and surgeons I was classified as suffering from PTSD (Post Traumatic Stress Disorder).

Not really rocket science as this is the same classification as soldiers receive after watching the horror of war. Although I can not even compare dealing with my own situation as anything near to being in the middle of a war zone I feel well equipped to say that I have had a pretty rough time of things and after suffering a brain tumour and osteomyelitis in my forehead and watching my face disappear before my eyes I suppose this is the only classification as to which I fit.

If you are diagnosed and treated for PTSD within 3 years there is a good chance of a full recovery but seeing as the counsellors that I was sent too could only concur that my situation was indeed a bit crap, it was about 4 years post PTSD’s initial occurrence that I was given the label.

In my case I did use anti-depressants for a year or so and at the beginning I really did need them just to make me calm but after about a year they started to make me feel suicidal (actually that isn’t quite true as I felt too bored by life to even bother to commit suicide but death did seem quite attractive) and I made the decision to come off them myself.

Now I didn’t crash and burn and I did the sensible thing by taking less and less over a couple of weeks but needless to say my GP’s (who prescribed this mind altering drug) never bothered to follow this up and so I can’t even imagine what some people who are not able to care for their own mental health have to support them.

Anyway, after the fantastic reconstruction to my forehead went incredibly well and I remembered what it felt like to be more confident and self-assured, I contracted an infection. MSSA and suspected pseudomonas.

I can’t tell you how I feel except that I am really finding it hard to see the sunshine.

I do not want to commit suicide but I really want answers to the big questions – what is life all about? I can’t deal with the constant barrage of death, depression and destruction that we are bombarded with daily as well as dealing with the constant negativity and anger that seems to crawl out of every orifice and media portal.

I need to inspire myself to get my inspiration back.

I need to aspire myself to get my aspiration back.

I need to have hope in order to give hope.

I need to want to live in order to live well.

I need to get creative again in order to make a legacy to leave.

I need to have the well time in order to get better.

I pray that I get my sunshine back – I have to pass it on to my son when I leave.

But I do not know if I can recover from the PTSD that I was originally diagnosed with in the first place and seeing as it is such a new diagnosis I haven’t a clue what comes after that?

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.

MRSA, MSSA, C-Dificile, Pseudomonas, Norovirus, Swine Flu (H1N1)

I think quite a bit about these and hopefully will get to explore my theories and questions a bit more but for now I am writing these down and get back to them later.

Please note these are my opinions and based on what I have personally been through.

If you are swabbed for mrsa, does it rule out mssa, pseudomonas and c-dif? Is the swab a placebo?

Hospital bugs – The new HIV – How long are they in your system for?

Can you exclude them from your body?

Can you swab for other bugs – C-dif, pseudomonas?

Diet – Does it feed off of certain things in your body? If I eat wheat I get extreme pain?

Natural Antibiotics

Silver – I wear silver plasters and they keep my wound clean

Garlic – I have garlic cloves in pickle

Tea Tree – Was on my wound before it opened – I was not infected on the outside

Honey – I had lots of different strengths whilst in hosptal and after the first day the site up my nose errupted copious amounts of putrid pus.

Just a little thought but if you were a hospital superbug would you want to live in a cold and draughty open windowed bathroom or a nice, warm, supermoist bathroom in the centre of a building.

I was speaking to one of my nurses who originated from Ghana and asked her whether they had such a problem with hospital acquired infections (nosocomial infections) in Africa. She answered quite catagorically that they didn’t.

I also asked if they had open windows and bathrooms with real air in them and she replied in the affirmative.

I do realise that the UK is cold in winter and, to the elderly and infirm in summer too. But when faced with these dreadful infections such as MRSA, C-dificile, MSSA and Pseudomonas would it not be better to get rid of them completely with the aid of natural environments and good old fashioned bleach than to cover up the problem and deal with the daily complaints of the cold with good old fashioned blankets?

Everyday when your bed is made in hospital it is standard for the healthcare assistants to take away all but one of the pleaded for blankets from the previous day.

Everyday elderly and sick patients are asked (if able) to get into their chair whilst the bed is made and to try to move around a bit which is obviously good for you.

And everyday someone will ask for the window (which has the only FRESH air, strangely enough) to be closed because all of their blankets have been taken away and they are ill and by now freezing.

Everyday you use the bathroom and if you are unfortunate enough or just too late to be first, you will have to get undressed and shower and clean your teeth in a room that is tepid, humid and an absolutely perfect environment for these hospital bugs.

Hospitals are now not allowed to use bleach – it might harm the person using it!!!!!

Hospitals serve tepid tea and coffee as they are not allowed to boil the water – it might hurt the person pouring it!!!!!

Are all of the natural and normal forms of defence to be defeated by the Health and Safety gone mad committee who dictate to the Hopital Police-Y?

I am all for the Common Sense Party – oh, that hasn’t been started yet!

I have an appointment at the hospital for my pre-operation assessment today. It doesn’t matter how many times I go for one of these it still makes me nervous. I will be asked the usual questions to make sure that I am well enough to cope with the anaesthetic. Can you put your head back? Can you put your chin on your chest? These questions are to ensure that the anaesthetist can put a tube down my throat in order to help me breath during the forthcoming operation to take the top of my septum out and create a bigger and hopefully better drainage for my frontal sinus.

It is not the fact that I am scared of the assessment but it is just a very real reminder that, once again, I have to face the fact that I really need these operations to work and that as well as the benefits of having the operations there is also the now very real chance of developing more infections.

I am not sure how infected one person can be but seeing as I am already dealing with MSSA, Strep and suspected Pseudomonas I am really concerned about going into hospital and getting as ill as I was before when I almost lost my life. After working my way through many concoctions of antibiotics and them not working, it has been a long, hard slog to even peek at the light which is at the end of a very long tunnel.

Because my operation is scheduled I will probably be swabbed for MRSA. This is the norm at hospitals in London and probably most of the UK now. I will have a very large cotton wool bud shoved up my nose, in my armpit and in my groin to make sure that I am free from this well known, and most notorious, hospital super bug-ger.

Being so notorious it is Hospital Policy to inform the Health Protection Agency (HPA) of any outbreaks of MRSA, other not quite so infamous bug-gers such as C-Dificile, Norovirus and the world reknowned Swine Flu but the lesser known and sometimes more morbid pseudomonas infections do not have to be shared as they have not had the media exposure.

As I have mentioned before, I was told by both my ENT and Plastic Surgeons during a consultation that they suspect that I have a pseudomonas infection and that I shouldn’t go home and Google it (obviously I did) because it is a scary little bug-ger!

I just have to hope and pray that all of this so-called Police-Y can prevent any further bug-gers from entering my system during the operations to come.

Have you ever felt bossed around?

Try being ill and having to rely on those around you. It suddenly feels like you are 10 again and always in trouble.

I have a great family support system and have had so many nurses, doctors and consultants who look after me and I really am grateful but sometimes it all gets too much and I just crave my independence and a little bit of freedom not only for myself but as a mother.

Everybody thinks they have the answer to your problems and because you are ill they think that they have the right to tell you how to get better.

For years I have trusted and listened to everyone and tried to please all of them, all of the time but I think the intensity of being so ill, getting a little bit better but knowing that we have to go
everything again is just bringing everyone’s stress levels up to maximum and we are all about to explode.

I am planning on going away for a night or two in the coming weeks. I know that many people are quite happy in their little world day in, day out but I am not like that.

I feel like a caged animal and if I don’t get a taste of freedom soon I think I shall go mad!