Back to life, back to reality

Things slowly started to get better with time. My wife was brought out of sedation, and over the days was more responsive, eating solid food and drinking bottled water. The children visited a few times and after two weeks or so, she was moved out of ICU.

I then had a battle with insurance – as she had come in through A&E, it was harder to get her moved to a room with a bed, rather than a ward. Anyone who has met my wife will know she is very particular, and having noise and movement around her didn’t help her mood, or aide her recovery. Thankfully everyone played ball, and within a few days she was moved to the Marsden in Sutton, closer to home.

I’m not going to go into too much detail of the remaining few weeks – that isn’t the point of this. The immediate threat was over, now we had to deal with the recovery, which was slow, but after 5 weeks in hospital, she was able to come home.

But it was a very different person who came home – after leaving the home she had had near total major organ failure, a stroke, lost sight in the left side, and was now dependant on even more drugs. And the toll on the rest of us was hard – we had been planning a holiday, and now had to increase the care around the house. We had had relatives staying with us constantly – and that causes strains. We appreciate their help, but sometimes need to be able to close the door on them! I hadn’t coped well with the stress, and neither had my mother in law, which meant things were not easy.

So where are we now, nearly a year on from that momentous few weeks? Thankfully my wife is slowly getting better – the steroids have decreased, however the eyesight still isn’t fully back. There are improvements, but not enough to drive. We have to be aware of any small slight illness – a cold for you and me, might be something more sinister for her. Never again will we leave things, and discount them as not serious.

I don’t want to go to Chelsea

My brother in law helped get her settled, writing her details on the board, and ensuring he knew the nurses. ICU at the Marsden was very different, a bright open room, lots of seats, and more up to date equipment. Not to say the last hospital wasn’t good in terms of treatment, but the modern nature made you feel more confident.

She was still in a coma, and would be for a couple of days, but now we were with the doctors and nurses who had been seeing her for two years. They determined that the issues had been caused by the immunotherapy, basically causing her body to over work, and start shutting down the major organs. Things were in a bad way (not as bad as the previous doctor thankfully), but we could see the way forward.

Now family could start visiting, and especially when they brought her round. In her typical fighting way, she was soon engaging with us all, and bossing us around. The kids could be taken in to see her as well (which they thought was great fun – mainly because they rank hospitals on hot chocolate). They still didn’t really understand the severity of the situation.

The major logistic issue was that the hospital was a train away, and this made it harder to take the kids for a quick trip – we had to combine it. My parents came down as they had now finished school, and so we could go up and back easier.

It was a Saturday when we had visited, and I was on my way home when I got a call half way back. She had had a minor stroke. Started with convulsing, and scared my mother in law who was still there. I was stood in the rain by my car at the station, not knowing what was going on, or what to do. They settled her, and sedated her, before we could all breathe again.

It is strange writing this down, as this a major thing to happen to a body, but feels like one more bump on the road for us. There have been long term implications – she cant see down the left hand side, has to take a multitude of drugs to counter act the effects, along with those taken for the other surgery, and it means our lives are a considerable amount harder. She doesn’t have the same energy, cant drive, gets tired, forgets things, cant see the children on one side, trips over the cat, but she is still alive. For one terrible evening, for one more terrible evening, that might not have been.

To hell and beyond

We were going to go to Tenerife on Oct 18th, just at the start of half term. The weekend before, my wife started having some breathing issues, and a bit of a bad back. We thought this was a re-appearance of an old back problem, and she tried some stretching, and Reiki style techniques. Friday night had been a struggle to sleep, but she had still been able to drive out on the Saturday to get her nails done with our daughter, and so we persevered into Saturday night.

This night was much worse, and she didn’t get much sleep at all, with a really tight chest, and was only able to breathe properly sitting up. Sunday, we called the Marsden to ask for advice.

They said to either come in, but we would have to wait for test results, or go to A&E – we took the latter quicker option. So at 4 oclock we threw the kids in the car with some snacks and a book, and went straight there. Luckily later our neighbours would pick them up.

In the Triage area, my wife couldn’t even stand up, and as I stood there at the counter, I remember looking back at her sat on a plastic seat, and almost seeing her life leaving her. We were rushed through a series of nurses and doctors, having tests done, and she was put on oxygen. Her intake of oxygen was down to approximately 10% of what you would usually expect, and obviously fatal amount without breathing support.

Through the night I sat by the bed, just talking to her, telling her to keep breathing. Questions were asked, papers filled in, and the background explained. The Marsden were contacted, and everyone was involved in planning what to do.

It was strange – as a husband you are pre-programmed to look after your children and spouse, but when something like this happens your focus changes. The kids were looked after, so I forgot about them. I had one focus, but when the doctors came in, that was redundant – they were the specialists, and they should do their job. What was I to do – I’m a trained accountant, but no amount of spreadsheets would help this. But I could sit by the bed, and keep an eye on how things progressed.

Eventually, I left at about 3am – the nurses told me to go. I had a very emotional drive home – not the first time in this crazy story. At home I ate a sandwich, and got some sleep, before seeing the children before school and going back in.

Things hadn’t improved, and now the feeling was that they needed to move her to a hospital that could answer what they thought was pneumonia. This would mean travelling under blue lights. When told I could see the concern in her eyes, but the nurse reassured her.

But there was a further obstacle. To do this meant coming off the oxygen piped out of the wall, and using a mask attached to an oxygen tank. And for this, a trial was needed.

It was a disaster – the portable tank didn’t give any where near enough to assist breathing. There was only one option, and so less than 24 hours after being admitted to A&E, my wife was put into a medically induced coma.

By now, my mother in law had arrived, and we were both in a state of shock. The driver and paramedic in the ambulance were great, they reassured us, told us what would happen, and did try to put our minds at ease. But still – WTF…

I pocketed my wifes rings, her bracelets, anything we didn’t want to lose and signed forms to allow the transfer, but didn’t really know what was happening. I felt caught up in a story that I didn’t want to read, and things were moving so fast. I hadn’t really called anyone – text messages help a lot – and here I was in the midst of this hell, that my friends and family were not aware of.

And the next hospital was awful. It was very Victorian – high, cold, dark ceilings, with barred windows too far away to see through. My wife was put in an ante room, off the ward, as they weren’t sure if she was contagious or not. We had to put on face masks to see her, surrounded by beeping machinery, pumps going up and down. No words can really say what it all felt like. A horror movie, a twisted mind had dreamed up. The nurses all came from abroad (God bless them all), and that meant that at times communication was limited. We (my mother in law and I) sat and waited.