This GVHD is a bitch. So to calm my fed up and worried head I thought I’d remember back to when things were actually worse. I know that sounds like a strange way of looking at things but in the bigger picture this stupid complication has been the least of my hubby’s struggles no matter what im thinking right now.
He was diagnosed in November 2013 and that was just the start of a very long road. We have learnt so many new words..leukemia, gvhd, biopsies, fbc, bcr-able, cell counts ,CNS disease, Hickman line, platelets, Philadelphia chromosome, petechiae, TKI’s, I could go on. Its like having to learn a whole new language in just a few days then take an exam on it. I think id pass 🙂
The first year went so quickly. There was treatments, biopsies (I have never wanted to take this away more than at biopsy times! ) stays in hospital, chemo ,which as amazing a job as chemo does its also bloody evil stuff! All of this was leading us up to him being in a stable enough condition to undergo his transplant. They had a perfect match from an unrelated donor, he had been entered into a trial for targeted radiotherapy. It was all going swimmingly. Then IT happened.
Hubby knew that it would be a while before he would see his friends again so the weekend he was due in on the transplant ward we had gone down to the local park to say his goodbyes to his football team. They were all there, pleased to see him. He was chatting, kicking a ball around and it was freezing! I told him I’d go and get us a takeaway coffee from town, got everyone’s orders and off I went. I’d only been gone 15 minutes when my phone rang. One of the lads was asking me to hurry up and come back..I honestly thought he was joking around, I wasted precious seconds laughing at him that he could surely wait a few minutes for his latte, the next sentence blew my world into a million pieces. “He’s collapsed and he’s having a seizure, you need to hurry back now, we’ve called an ambulance” .I’m pretty sure that I broke every traffic law that day. Arriving back at the park I dumped my car in the middle of the carpark road jumped out and ran..I’ve also never run so fast my overwhelming fear speeding me on. He was lying on the ground barely conscious, an image that I will never forget. I was talking to him over and over calling his name begging him to sit up to look at me to say something. I got nothing. I have never in my life felt so much panic and fear as I did at that moment.
The paramedics arrived and I was having to tell them so much, medication, his condition. I’m amazed that they were able to make any sense of me I was so desperate for him to be ok.
The next 24 hours were horrendous. We’d been taken to the local A&E who were doing as much as they could, but I knew that the best place for him would be at his transplant ward where they knew him. I was calling them letting them know what had happened and they were amazing organising transport from where we were to them but things like this all take time. Putting your faith into someone else hands for them to look after one of the most precious things in your life has got to be one of the hardest things I’ve had to learn and still struggle with now.
He was conscious now but had absolutely no recognition, not of me, himself, where we were or what was happening to him. They performed CT scans thinking he might of had a stroke but there was nothing there. They had no idea what was happening inside his head. He couldn’t talk he couldn’t move the right side of his body. It was like he’d had a massive head injury but with no accident. Even once we were at his transplant ward they were struggling to know what had happened. So many specialists came and went from his room performing tests asking me questions trying to ask him questions but my poor husband couldn’t do a thing.
It wasn’t until 4 days later that his consultant came to me. In all that time I barely left his side. He still had no idea of who I was or how to do the simplest of things like feed himself. I did it all for him. I talked to him constantly trying to get a response. Then the consultant told me. The CML had spread to his brain and central nervous system. It wasn’t a stroke or a haemorrhage it was the bloody cancer! I was furious. Not with anyone just the situation.
Had he not been through enough. This was his time to get better. To have the transplant and come through the other side not to have yet more crap piled on him. On us.
I went home that night after sorting out one to one care for him with the nurses. He couldn’t be left as he’d already puled out his Hickman line in his confusion. I kissed him goodbye. I told him that I loved him. I went home cuddled my children, gave them a very simple version of what had happened,why id had to abandon them to the care of friends for days on end and I went to bed and cried. There is only so much a person can take before it breaks them.
When I woke up the next day I steeled myself for another day of horrible news, of tests that I would have to try and explain to this man who was just a shell of my husband. I walked into his room and as he looked up at me I saw the reason that I would never give up on him. I doubt anyone else would of seen it but I knew that he had recognised me. I saw it in his eyes. In the slight tremble of his mouth. I knew he knew me even if it was deep deep down and that gave me the determination to keep on going!
He is the reason I will always keep going and keep helping him fight this battle no matter what is thrown at us. We will win this.
coffeewithkirsty 