Still worried

So its Monday morning – Sunday started normally, I went to football because mylove was insistent the night before that she was ok and I should go.

She didn't have a good night and in the morning after her shower she was in an awful lot of pain and started to have trouble breathing. The hospital phoned me at football and said that and that she would like me to be there to hold her hand so I went straight in  and saw her.

She was away with the fairies doped up with morphine and on oxygen. She didn't really know much of what was going on. Neither do the doctors really. Her white cell count is coming down which means the infection is lessening thanks to the anti-biotics but as her pain is getting worse they are unsure what is causing the pain. They said her ultra sound and blood tests are basically ok and they want to do a CT scan to look inside and see what's going on. A surgical blokey came along too and he again said they didn't know and they would have to find out what's what.

Later in the day she perked up and was as good as she was the day before, We read the papers and watched some silly football before playing hangman. She was doing fine until it got nearer to me leaving which is always a hard time for us both. I left her again hoping that she would be ok and that the improvement would continue who knows what today will bring.

Its a bit of a roller coaster really up and ok one hour and scarily frightening the next. But she is in the best place for all that i hate hospitals and the way they have dealt with her in the past we have faced none of the horrors of her previous visits. They are doing their best working their way through a series of steps to find out what is happening and trying to make sense of a confusing set of symptoms and test results.

Ah an update this morning the boss man came to see her and is now worried about a shadow on her ovary, annoying when several different bods have said that it had seemed ok. So she is to have an MRI scan today poor love. She hates MRI so much they give her  claustrophobia and are normally quite uncomfortable for her to be lying on the bed there. At least then they can get  a picture of her insides and hopefully it will be conclusive showing something which we can then find out what they are going to do about it.

A bright and sunny cold day, I walked the dog and talked to the sheep again. The birds were in full force today lovely birdsong all around, I hope it continues.

Delve into the scary world of teenage drinking

So I went to see step-daughter1 after leaving the hospital as she was in a right ol’ state worried about her mum  and desperately scared and out of control.

It was only 8-30 or thereabouts and she was still quite sober. She listened well to me and I calmed her down told her it would be ok and we would see her tomorrow at the hospital. I told her to make sure that she had washed away the effects of the night before before she came in and to look decent.

midnight came and I was just leaving my dads next door having sat and nattered and got rid of a lot of my stress. I wasn’t looking forward to being in the house by myself overnight. I find it very uncomfortable and I feel a little lost. I never quite know what to do with myself during those times. Anyway the phone goes and it was the 22 year old out of her mind with scaredness and alcohol insisting that she was going down to the hospital now to see her mum cos its her mum and no one can stop her and all she wants to do is to lie down next to her and sleep.

Obviously I did not want this to happen in any shape or form. I didn't want her to disturb her mum, to make a scene, to get herself in trouble etc etc. She point blank refused to listen to anything I said and in the end hung up on me.

So i ran home got the dog ( now I have no reason at all for why i got the dog but i did) put him in the boot and hot tailed to Toytown at many over the speed limit thinking great Friday night loads of plod about but I didn't get pulled thank god.

I got to the hospital and as she wasn't answering her phone I didn't quite know what i should do so i had a quick peek around and headed towards town constantly phoning (on hands free) till finally she answered. She was in the pub still and i met her out the back and watched with horror as the various emotions Anger, tears, (I know not an emotion) rage, despair, desperate attempts at self calming just flowed across her almost at will.

She was struggling to listen to me and in the end I just kept saying that if she went down to the hospital in that state she wouldn't be able to see her mum tomorrow as she would be arrested and probably banned from the hospital. I said it again and again and again. She was so distraught bless her, worried about her mum and unable to express it in a way that wasn't extreme. She doesn't want her to die wants her to be at her wedding and I did all I could to reassure that there was nothing i knew that could lead me to say that that would happen, that if i knew anything i would have told her and that all we knew was that her mum was poorly and they were doing tests and would find out and get it sorted.

We ended up going into the sweating heaving noisy mass of the perkin and what a joy it was all these pissed people bouncing off me and her and both of us bristling with emotion and anger at them. We were lucky i think that no-one really challenged us cos i think if either one of us had got challenged both would have just lost the plot. We found her girlfriend and i tried to talk to her and we ended up going out the front of the pub where all the police and bouncers were and some silly pissed tart started getting a bit lairy with me and i just let rip at her “Do i look like I'm having a good day? Just fuck off and leave us alone and get out of my face” then the daughter arrived again and she and I had a few words and she brushed me away crossly and tried to go back in the pub and the bouncer refused to let her back in again.

IN the end i left them to it. There was not much i could see to do further. They were of to a club so i hoped she would go and do that and not something stupid. I told both of them that if they needed me to ring and went home finally to go to my bed for the first time ever alone in this house i realised and tried to go to sleep. I slept in my clothes with my phone by my ear. I actually had it close cos i played a recording of my love asleep through the phone so that i would go to sleep better. It freaked the cats out cos they could hear mummy but not see her but i think it worked for me.

They didn't ring and the today she turned up at hospital happy cool calm clean and collected and a little embarrassed, not much but a little. We had a good time the three of us together feeling like a proper family for once. She aint my kid but she's the closest I've got and I am proud of her. not proud of how she was last night but proud of how she ahs changed her life around from the mayhem that it was 4 or so years ago

SO there's good news

My love went into hospital yesterday, a truly frightening thing.

We waited for admissions to phone us with a time (2pm) ignored it and wandered along about 3. No surprise, there wasn't a bed ready and  we had to wait for a few hours.

She was seen by a doctor and the registrar and had some tests, some bloods and they said they would try her on anti-biotics and see what happened. Her white count continued to be off the scale and that is a source of infection but no-one knows where it is.

She finally got settled into a bed and was for her, quite calm about it. She has had such problems in the past at hospital that I was worried that she would really struggle but she has been quite keen to be there and get this sorted out.

She was cold during the night (I thought hospitals were kept warm and toasty) and needed more blankets. Not helped by hot flushes which make her feel cold really quickly too.

Today she had more examinations and an ultra sound which showed nothing unusual. She has a cyst on her ovary which they aren’t worried about but everything else was ok. Her blood tests showed the white count beginning to come down which is great news as it means that the anti-biotics are beginning to do their thing so hopefully this won’t last too much longer

She is  feeling a little better and I am feeling a lot less worried.

Scared Frightened Frightened scared scared frightened scared

 

So today my love will get further results from the doctor to see if her white blood count has gone down and therefore whatever it is that her body is fighting has magically disappeared thanks to the anti-biotics.

This is highly unlikely as she is still feeling pretty rotten and her glands are still up so the next thing that happens is that she goes into hospital.

OH MY FUCKING GOD

Hospitals and mylove are not a good combination. She used to be a nurse and gets very frustrated and frightened. Its no wonder, seeing as when she had her double mastectomy they didn't give her any of her usual medication after the op despite us pointing out that she is normally on stronger painkillers than a lot of people are on after the operation anyway normally. So she suffered withdrawal and immense pain and a stupid health care assistant who tried to pick her up by her armpits a few hours after a double mastectomy.

Second time in we had exactly the same situation with regard to the medication despite attempting to ensure that it did not happen again. They failed her in so many ways. They didn't empty her catheter bag until it had back filled her kidney and caused an infection. Nurses handled her medication, she was neglected horribly despite me being there for as long as i possibly could be.

We complained the second time and it was completely washed away, it just didn't happen everything we said was disputed even to the point of one nurse ‘not being on duty’ when we had a photo of the med sheet showing her signing of the meds that day. It left us baffled and annoyed.

Not surprisingly she is determined in her wish never to go back and has got herself into a state at the thought of this happening all over again. My worry is that that will occur again and I will support her throughout that as i did before. But I am more scared that she is going to have to have an operation again. They have said before that they don't want to give her a general anaesthetic ever again unless it is life threatening as she has such a bad reaction to it and had such a bad time coming out of the anaesthetic last time. I am just so scared that she won’t come back that she will leave me on the bed on the way to her operation and i will never see her again. I cannot begin to explain even to myself how scared that makes me I am so terrified that i cannot even talk about it. I worry so much about it that I am terrified as to what my reaction at that time to her will be especially as it could be the last time she sees me too and I must give the most support that I possibly can.

I love her so much I can’t bear the thought of losing her. I would be so empty without her she makes me whole on so many ways and completes my world. How could I possibly get through that grieving process without her. She is the one who helps me get through life itself.

Oh fuck it

Peoples

I have had lovely texts and phonecalls, emails and posts on my Facebook page and even on my Twitter from lots of people congratulating me on my exam pass.

It is lovely to know that people are there and that they care about me and share in my success. The mohican’d step daughter called too. “What the fuck is MCP” she said followed by “do you want to but some advertising” Bless her, I am really chuffed with how she is turning her life around from a difficult early adulthood. I was very worried that she would go right off the rails and end up in a very dark and horrible place. In fact to be fair she has been in some fairly rotten situations and hasn’t made very good choices in what she did but now she is doing well and I am a proud daddy

From parents and aunties, step mums and friends new and old and even some of the recruitment agencies who hold my CV I have had lots of congrats. Don’t know how I am supposed to accept them other than saying thanks, it makes me feel a bit embarrassed to be honest but it is good I know.

Some results are in but the questions remain

My love went to the doctor yesterday to have some swabs taken for more tests. She was in with the  doctor for about 45 minutes an interminable time to be sat outside waiting! I sat reading magazines of no particular interest to me and ignored the flotsam around me. I did a good job of protracting a “fuck off and leave me alone” aura.

Surprisingly he had some results back from her blood tests last week which show that she has a super high white cell count which shows an infection or inflammation of some sort somewhere. However it doesn’t narrow down the source of the problem so hopefully the swabs will do the trick.

He has put her on some hefty anti-biotics to try and fight the infection and increased her oxycontin even more so today she is a  bit zombiefied

The cogs run so slow and it is extraordinarily frustrating to have to wait and wait while she continues to feel so poorly and is suffering so much. I know that she is worried and scared and that that will continue for a while yet till we know what is going on.

And so it begins

a new blog a new time and a scary one.

The start of a new year. Yeah I know its February :-)

I have no job, I am studying busily to get my Microsoft certified qualifications and applying for jobs all over the place without any success yet.

My lady is very poorly and today we go to the doctors again to have some more tests before we can find out exactly what (else) is wrong.

Scared? I’m fucking terrified. Although for years we have known that she will go long before me due to her strange and rare illness, now we head into a time when there might be something more wrong that will bring it to the fore much quicker. Of course right now we are at a point when we don’t know anything other than that she is hurting and tests are being done but as is the human way I prepare myself for the worst. The brain can easily make a mountain out of nothing and what we don’t know is always worse than what we do.

I can’t work out how I am, I can’t work out how to support my love and her family. I’m not doing a very good job right now. I feel all alone in some ways and don’t know how to get around it.

I want to What Is Right.

I always do, I try to live my life by don the right thing making the right choices and have  a strong view of the way things should be done but this is countered by my unforgiving honesty. If you ask me my opinion I will give it – truly and honestly from the heart and impulsively

But I am so messed up I don;t know how to balance those two. When asked about the problems of a teenage step-daughter I gave my opinion and then found myself stuck in a place where everything  I did and said was wrong and made it worse. Am I wrong to feel anxious when I feel like a stranger in my own home, when I am pushed out from my normal routines, routines that help me to keep going, routines that I know I HAVE to do to stop me from plunging into a deep dark abyss that is all to close and that scares me so much? No I am not wrong in that but I am wrong to let that interfere with the security that my wife feels when she is going through such a scary time. I am wrong when it affects a 17 year old girl who feels alone in the world and abandoned from her adults. That balancing act failed this weekend and has caused a huge rift that is taking some overcoming.

Can it be resolved? yes it can but Bob the builder aside it is going to be a difficult, awkward even and easily derailed I think. It is difficult to be accused of not giving support to someone who is not interested in talking to me, who has no trust in me and who is plagued by teenagerness – instant gratification – always right – poor at taking criticism (perhaps that's not teenagernesss we are all bad at that i think) It leaves me feeling useless and unable to do What Is Right.

And so the day begins