Breaking News - Well it was at 08.00

Andy here, Julie is in Walton Neurological Centre for her surgery, she was admitted yesterday but I need to back track to Friday to ‘fill you in’.

Friday afternoon Julie called me at the office to inform me that one of Mr Farah’s specialist Nurses had called and informed her that one of her pre-op assessment swabs (the nasal one) had come back positive for MRSA! We were gobsmacked for knowing surgery was imminent a couple of weeks ago I had Julie go and see our GP and get swabbed, the result came back negative. I also took the precaution of buying ‘Hibiscrub’ which is a 'MRSA destroying' body shower, shampoo & hand wash, we had both been using this for well over a week, our hygiene regimes at home are strict. No one told us to do any of this, it was just me being ultra-cautious (remember earlier blog “Fail to plan, plan to fail”). Seems even my best intentions were not sufficient. The Nurse had contacted our GP and arranged a prescription for an antibacterial nasal cream to take this second beast on and I arranged for our pharmacy to deliver it, everyone jumped through hoops, an hour after the initial call and Julie was applying the ‘bactroban’ up her nose using her thumb! Lol - I jest!  she’ll kill me later (love you hunny) she used cotton buds as recommended.

Some info on MRSA for those interested: http://www.nhs.uk/conditions/MRSA/Pages/Introduction.aspx

The instruction was still to call the Bed Manager Sunday morning to get confirmation that her bed was sorted out and to come in unless we received a call to the contrary.

Saturday we had an amazing chill out lunch catching up with friends Susan & Gareth, misfortune had kept us from seeing each other for around a year so it was good to catch up but I suspect also a bit of a shock to see how much Julie has deteriorated in that time. After lunch we were going to walk the shops in the little town but we managed one before Julie told me she was feeling off form. We were home within 40 minutes and about an hour after getting home, yet another seizure kicked in. We have a routine to try and distract her brain from the seizure and we sing, well Julie sings, I wail along. Advised by one of her ‘secret agent friends’ who works with young adults with Epilepsy & similar we sing either slow nursery rhymes (Baa-Baa black sheep or twinkle twinkle little star) or we sing the twelve days of Christmas! Weird, but it works for us. As a carer all you can and should do is remain calm and comforting, keep in my case Julie calm and watch for any untoward symptoms not shown before. Julie's left arm in the severe seizures flips as she calls it, it shakes away from her side uncontrollably then the arm begins to curl up towards the shoulder almost like lifting a gym weight, the scary thing for me is the wrist then begins to pull the hand down in the direction of the elbow, it looks like it isn't going to stop and it goes beyond the natural bend/flick of our wrists. I can understand why Julie gets in to such excruciating pain.

Sunday came and it was just a chill out day, being Mother’s Day I served Julie
breakfast in bed,  her looking lovely in bed opening cards with her tray on her lap, here's me starkers except for a pinafore apron delivering her breakfast! If of a nervous disposition Avert your eyes NOW---->

 

Around 11.30 I called the bed Manager who confirmed Julie’s bed was booked (turned out Bedroom) for she was to be in an isolation ward due to the MRSA.

We headed for the hospital around 3pm and checked her in around 3.45. All of her theatre clothing and scrub was laid out for the morning. The Nurses were brilliant as always, a Doctor came to see Julie, took a list of all her meds, ‘borrowed’ the box of meds so she could get prescriptions written up for them’. She was visited by the hospital pharmacist too, both were slightly surprised by the variety of drugs Julie was on!

One of the Nurses arrived to take some blood from Julie, he’d just finished and a knock at the door was followed by Mr Farah’s head appearing around the door, swiftly followed by the rest of his body! Makes you wonder when our Doctors get any real time off, its Sunday night and he’s visiting his surgical patients. We didn’t shake hands for obvious reasons, he leant against the wall and the conversation went like this:

MF: You know you’ve got MRSA in your nostrils? It’s a problem, I’m very concerned at the risk of wound infection, I’d prefer not to operate on this basis. We have done a swab tonight and we’ll look at the results in the morning, I’ll have you prepped for surgery BUT if the swab result shows the MRSA I’m going to strongly suggest cancelling. Instead we will keep you in here and continue to treat it, do further swabs and look at the results and decide from there, I’ve got theatre time booked on Thursday I can do it then. What do you think?

Julie: I don’t know, (looking at me) what do you think?

Me: I looked at Mr Farah, I asked, how big is the tumour?

MF: He hesitated but responded with “It’s not the size of the tumour that’s the concern it is the risk of wound infection”..

Me: I can see no option but to delay,

MF: Ok if the scan is clear we’ll do the morning, if it’s not we’ll do it Thursday. See you in the morning.

As he left Julie was staring at the sheets, I left it around a minute before asked “Penny for them hunny”, she looked at me, I’ve known this amazing woman around 13 years, I think I know her well, the look on her face was one didn’t want to see, I began to cry, “Why are you crying” she asked? I responded “Please don’t give in to this yet, please don’t” I was begging her. As I dried my tears we started to talk, Julie’s concern was her quality of life if the MRSA infection hits her removed tumour site. I understood her concern but said well if you decline the op you know what your quality of life is going to be, at least with the op there is a chance you will not get an infection.

At times like this it’s so hard to be objective but for Julie’s sake I needed to be, this wasn’t a time for me to be selfish. I explained no one but she knew how much of a toll the seizures were having on her and how she was coping or struggling with her decreasing mobility plus yet another operation in the pipeline. But I felt for now we were both probably getting ahead of ourselves we have to believe the MRSA will clear up and so the decision is op in the morning or Thursday, lets cross the bridge on Wednesday if the infection was still here. I appreciate for many of you this is upsetting reading and I apologise but if you are on our journey we’re telling it ‘warts n all’..

As usual I far outstayed visiting, I helped Julie into her PJ’s and we hugged goodnight, no kissing ‘just in case’. For her first surgery I sneaked on the ward at 8.a.m. to see her off to theatre, sadly we never know if this is our last goodbye. Tomorrow is different; we don’t even know the surgery would happen, our gut feeling is it would not. I headed home, I have to admit to being drained, frightened, I called my Mum, she’s my confidante, my best friend and yes I can cry over the phone to her, it’s hard to describe the events to anyone without my eyes filling up. It’s only of late that the hard realisation has truly hit me of precisely where we are, up until recently even with the beast our lives were very much ‘normal’ Julie did the washing, yes the ironing went out, Julie does the cooking but of late Julie isn’t confident doing stairs on her own both from a safety point of view and from physical point of view, our laundry room is on the top floor, that’s an extra two staircases so whilst a couple of months ago I’d say “I can’t remember the last time I went to the top floor” these days it’s a daily occurrence to fill and empty the washing machine & tumble dryer. Julie struggles with somethings that we all accept as natural, undoing zips, putting on tights, putting on & lacing up shoes. Showering, from a safety point of view I’m always in the shower room in case her leg gives up.  I now consider myself a carer not just husband, partner and best friend. It’s no burden though Julie does feel one; I’d do what I do daily and more as it’s required as many times as its needed forever if I could, as I remind Julie, our wedding vows said “In sickness and in health”.  

Anyway I was in bed by 9pm and was woken by my ipad falling out of my hand on to the bed as I dozed…

This morning, Monday 16^th March, 2015. Around 07.00 Julie called she was prepped for surgery, around 08.00 she was calling to say “It’s been cancelled”, again we weren’t surprised. Julie explained the conversation as it had happened. MR Farah had confirmed the MRSA was still present, he was cancelling the op would have more swabs taken and he’d review them on Wednesday. Julie isn’t certain but the way she explained this next piece made my ears prick up… he apparently said “I’ll check the swab results on Wednesday and we can discuss and make a decision then but MRSA or not I need to operate on Thursday.” Perhaps I jump the gun and to the wrong conclusions but this throws me back to last night’s conversation when I asked how large was the tumour now and it was ‘body swerved’, I may be way off the mark, I’ll find out by hook or by crook but with Julie struggling health wise my gut is telling me the tumour is accelerating like an F1 car on the grid.

I saw Julie at lunchtime, she seems much laid back at the slight delay, I think I’m back in good books I arrived bearing a Costa Coffee ‘Latte’.

So, it’s another waiting game poor Julie whilst most of us would love to have a nice rest in an adjustable bed with servants running after us we would jump at it but Mrs Shute will be climbing the walls by Wednesday..