What is wrong with him, then? Part 3 – The Op.

I’ve been scared to write about this. And unsure how to. I will probably miss a lot out as although it is important to me (for example the way in which S’s parents and my mum and aunt looked after me), it’s not that crucial to S’s case. This is only about me a bit, and I don’t want to be too indulgent. And I will not write it as a student nurse would, because at that point I was not one.

Summer 2007. S was admitted to the Walton Centre the day before the op in the company of me, my mum (an absolute shining star) and later in the day S’s mum and dad who’d travelled the 6 or so hours north and were staying nearby in their campervan. We were staying at my aunt’s, about 40 minutes’ drive away.

My mum and I spent the day in Liverpool trying to distract ourselves. We knew there was nothing we could do, and that he was in expert hands. To a large extent, it worked and we met up with S’s parents at 6pm, when we were told the op should be over, and he would be recovering in HDU. We waited in the family room. And waited…we were all getting rather afraid. We had all been reassuring ourselves and each other. The op could have been late starting; they’re just finishing up; the golf had been too strenuous the day before; you name a reason, we probably spoke it out loud in the next three-and-a-half hours. But then we had someone come through and explain that it hadn’t gone quite as planned. The surgery had gone well but there had been complications. S was not yet in recovery and was still in theatre, but it wouldn’t be too much longer.

It was 10pm when we were called into a small office to be told the news. In there were the surgeon, a doctor, the anaesthetist and the four of us packed in together in the hot, airless room. We were told that the operation, performed transcranially [a section of skull was removed] had been successful. The tumour had been bigger than expected; about the size of a tangerine rather than a plum. Very unusual to be that big. One optic nerve had to be cut to remove the tumour. The hypothalamus had also been affected. About 15% of tumour tissue had to be left behind because of this. His head had been closed up.

When the tube was taken out, his oxygen levels dropped sharply. Fearing a blood clot, his skull was opened up again as an emergency. There were none to be found, and he was closed up again. He kept having hypoxic events [oxygen levels dropping dangerously]. They didn’t know what was causing them. We had plenty of opportunity to ask questions and to talk about what had been said. There were tears in the anaesthetist’s eyes. I could see that she had been crying and had had to compose herself for this meeting.

We were told that he was now in intensive care. We were told that because of the lack of oxygen he was unlikely to make a full recovery, in the event that he recovered at all. We were all told to go and see him to say goodbye.

So we did, all of us around this fleshy thing that we knew was S. We couldn’t see much between the bandages and the blankets, and around the ventilator. A face was there that barely looked like his. Bright red, swollen, lips pushed out, mouth dragged open. I had expected him to look a bit like when he was sleeping. He looked like nothing of the sort. It was an utter shock.

None of us wore protective aprons, and I was not asked to tie my hair back. There were four of us round the bed. We didn’t take any precautions because they wouldn’t be needed. After we had been there for an hour or so, we were called away to talk again. We were called back about ten minutes afterwards, as he was going this time. Three times in all we said our final goodbyes to my beloved, their son.

All that night we sat up with him, crash trolley at the end of the bed, oxygen sometimes dipping as low as 30% despite being on 100% oxygen. He was in a chemically-induced coma. He had an irregular fast heart, was producing litres of blood and mucus from his lungs and had no urine output. He was in danger of organ failure as well as oxygen starvation. The only times we left were when we were told to and the curtains drawn round. We started taking it in shifts so we could talk to him, hold his hand and give the others a chance to have a cry, a talk, a cup of tea in the family room. We did an awful lot of talking. What would happen if he needed to be taken off the ventilator with no hope of recovery; if he was in a permanent vegetative state; if he needed 24-hour care; how we could go about adapting the house or moving elsewhere if he needed specialist equipment. We left at about 8am, when the nurses convinced us that he was stable enough for us to get some food from the canteen, and we were straight back to him.

I will be forever grateful to S’s parents for the way they treated me as his love and his best friend, and the one whom he had chosen to share his life. I was not officially his next of kin. They could, if they wanted, have cut me out completely (I have known this to happen) but they did the reverse. They made sure not only that I was included in talks about his future, but that I had primary say. They are amazing people and I am proud to be a part of their family.

The next few nights we stayed on the hospital site, in a room provided by ICU. It was too close a call to spend even a night away. His two younger brothers travelled up to see him. Every second he was still there was a victory; every false start was a triumph, like when he slowly recovered after being trialled on 80% oxygen and he could not cope. Close friends made the journey to see me, knowing S was too ill for anyone but family. The surgeon told us that it was a “bloody miracle” that he had survived.

There was an amazing moment one night. It must have been the third or fourth past the operation. His dad had finished a shift with him, and I came in, took my customary place on his left hand side and said “It’s just me and thee now.” He squeezed my hand. He was still in there. The moments kept coming. Two days after, he was awake when we went in to see him. His first words to me, barely understandable through the mask, were “Somebody shoot me.” He was in pain. But everything changed from that moment. There was actual hope.

He spent three weeks in hospital in the end, and in the last week, after the hallucinations and confused conversation faded a little, raring to get out. Oh, there are many tales that could be told. How because his jaw muscle had been cut, he could not eat. How sweet a cup of water tasted. How his surreal sense of humour meant that the charts were continually being checked for errors. The staples in his head were removed, all 47 of them. One of the doctors wanted to sedate him to drain fluid from the huge fluid-filled lump which covered half his forehead, but he refused. He had ECGs and MR scans aplenty. It took over two weeks for him to be off the oxygen. He was ecstatic to have his first bath and his hair washed, and cried when he heard a blackbird sing.

So, I finally got him home again. I helped him recover; helped him learn to walk again as his muscles were too wasted to support himself properly. We evaluated his progress together and kept each other’s spirits up. We got married the following year, and I started on the long road via an access course to becoming a nurse.

Problems since the op? The longer term ones? Post-traumatic stress disorder; visual impairment (blind in one eye, limited field in the other), memory problems with events, present and past, and words (resulting in some peculiar substitutions). He is less socially inhibited, and will for example swear or joke when it’s not appropriate. He gets tired on little exertion and drops off at a moments’ notice, like a toddler does.

All this is why it fucking BREAKS me that ATOS think that he is not good enough to be supported.

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10 thoughts on “What is wrong with him, then? Part 3 – The Op.

  1. I remember this, we were all on the forum together praying and sending force, and crying, refreshing constantly for more news and anxiously awaiting the outcome of the op and the long hours and days that followed. Each behind our little computer screen and worried sick about a man some of us had never met except online, and we lit candles in support. I remember going out for a run, and running until my lungs burst, and I dedicated that run to S. because that was the closest I had ever been to what he was feeling without oxygen right then, and it didn’t even come close. It was hot, and the sky was blue and everything along the towpath seemed so alive and it all felt so wrong… Yes, I remember. And of course I remember how relieved we were when he woke up. At the time I never realised that things had changed so dramatically for you both, I was naive enough to think it would all be alright again…

    And ATOS are a bunch of tosspots. (Keeping it family friendly here)
    (tinebeest)

  2. The bravery you showed in the hospital is something I can only strive to achieve. To see our mate lying in that bed and trying to think of something witty or helpful to say was nigh on impossible. We are now happy to be as brave, helpful and vocal as you wish, if it will help you both achieve what is right and just and urge you to keep this up; no matter how difficult to tell, darling girl…

  3. Wow, I knew it was touch and go, but I had no idea it was that bad. What fighters you both are and you deserve to be treated so much better.

  4. I have no words. Just know that I love you both. Is it strange to say that in some way I’m thankful that M didn’t have to live through that as it happened? Especially after her Grandad had died from brain cancer a couple of years before.

  5. I remember being told the news via the forum. I told hubby as we had met you not long before and he wanted to know what he could do to help. He decided to send a DAB radio so S could have something to listen to. I remember thinking “but he needs a sword in his hand if he passes” and then learning about the penknife and bursting into tears. I went to Guildford cathedral and lit 2 candles, one for him and one for you, wanting him to know as soon as possible that I had done this in the place they filmed The Omen. Hearing back at a later date that it had made him smile to hear this. I sent chilli hot chocolate as soon as I heard he was on the road to recovery as had promised he would get that if he pulled through. The guy who ran the chocolate shop always asked after him whenever I went in after I told him why I was buying it. I adore the very bones of the pair of you. x

  6. I really hope ATOS read this to know what went on then and how it has affected S since. Maybe attach a copy to your next documentation as well as sending to MPs etc? Hugs for both of you

  7. I’ve just come back and read this for a second time and it’s just floored me for a second time, too. I remember the wait for news on the forum. I remember feeling so utterly helpless to aid you in any way.

    But reading your experience is just another kettle of fish all together. You are both so brave.

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