I have to recap but I think I’ll miss stuff. Here is a Facebook status that I made when I was feverish and admitted to UCLH on the 21st December.
‘So I was admitted to UCLH yesterday. I received radiotherapy at 1500, and felt fine. Coming off the tube afterwards the wind hit me and I couldn’t stop shaking (rigors), went to the GP as I already had an appointment and it was close. Contacted my team while in the waiting room, no answer, saw GP who was very good actually. I was feverish, with a high heart rate, and she suggested A&E, the problem I had was the knowledge logistically it would be simpler if I had gone to the Marsden. I phoned the team and they strongly suggested A&E, particularly as potentially I had Neutropenic Sepsis. This is when you’re immune system is so suppressed that you have almost no white blood cells (the ones that fight infection) in your system, a very severe emergency.
Dad and I then walked to A&E UCLH because a taxi driver refused to take me. In A&E I made a huge fuss, demanded to be seen immediately, and to be fair they were very quick. Thirty minutes later I was fully monitored on resus with IV antibiotics and IV paracetamol flowing into my system, and my temperature falling from it’s peak at 39.5C down to normal. Due to the fright in my voice and Dad’s voices Georgie, Dave, Matt, Mum and Auntie Marilyn all came very promptly indeed. As things were readily appearing less serious, Paul stepped out of this one, having to be in Newport today.
We are not entirely sure what’s happened. The normal places to be harbouring an infection, were negative, my WCC (white cell count) was 19, very high but could be as result of the steroids. CRP (a marker of infection in the body) was low.’
I was accepted at the Marsden, the next day and continued radiotherapy for everyday that week. I was discharged after two days.
That’s the recap.
Before I went to bed on the 29th of December I could have guessed something was wrong, because I got mum to type while I dictated the blog about Christmas.
Here’s the blog
‘I don’t really feel like doing anything. Radiotherapy has taken its toll. I had my last session today and was given the mask to take away. Fortunately I had the chance to take part in a trial comparing closed to open masks and got randomly allocated to the open one which was marginally better. I could not open my mouth and was pinned down but at least I could see. Other than that it has been a whirlwind of pain and discomfort and I am sleeping a lot.
Despite it all I did manage to have a good Christmas with my family. We are not a religious family but we tend to take Christmas seriously and there was lots of lovely food made by Mum and Auntie Marilyn. We had a lot of board games between us and enjoyed our usual rivalry. My favourite present of all was the book Georgie created for me from photographs and she added quotes. It made me feel very special to feel so loved. Further to this Mum and Dad got me an aromatherapy kit and Georgie’s brother and sister in law bought me an aromatherapy massage session. Although I think there’s little health benefits in these therapies, they help me relax which is just as important. There was definitely a Catan theme this year with Paul getting me an expansion pack for the main game and Matt presenting me with a very nerdy t-shirt. Catan is my favourite board game by the way. Dave did his bit to keep me warm with a jumper.’
Imagine a world where you can’t communicate but you can hear.
That was my reality on the 30th December.
I woke up that morning disorientated and getting worse. I tried to eat some porridge which made me really sick. I’d been sick twice in the last week, it was very frustrating as I seemed to be nauseous for only a second before I was sick, so no warning. Basically things are getting worse, although we (including the doctors here) aren’t quite sure what happened when I was admitted to UCLH it would seem a virus is likely as nothing grew back, as viruses don’t replicate like that.
Of the many weird things happening to me, I also seemed to have a right sided hemispatial neglect, which is yet another line I didn’t ever want to say about myself. A hemispatial neglect is a deficiency to awareness on one side is observed. It’s interesting as a Doctor, and awful if you’re a patient, I almost walked into my Mum. What’s weird is you can see kind of, but you’re not aware of anything specifically in that eye. If you wave both hands at the person then they can see both, if you just wave the affected side, the patient won’t see. Mum was to my right when I just got up and walked straight into her, for her then to slide her chair back, it was rude but I wasn’t aware of her being there.
The list of neurological symptoms is quite endless. I was very drowsy, but could comprehend what others were saying (so I still had Wernicke’s area) but all I could seem to say correctly was yes and no. This was incredibly frustrating and very scary for us all. I tried to write but I neither could hold my fist to hold the pen nor probably be able to read my faint scribble. Georgie, again being a very helpful Speech and Language Therapist brought in communication tools for me to use. Even that wasn’t that easy. She quickly found out that I could understand everything but that when I went to speak nothing sensible came out. All I wanted at one point was oramorph (my head was in excruciating pain) and that was only realised after Georgie did an alphabet on a piece of paper and I pointed to the letter O. Another difficult one was to ask for a bottle to wee in, especially when you’re in no position to play charades. Eventually Georgie said toilet, so I waved my arm more, bottle? Yes!and she quickly ran off to find a bottle. I had a weak and insensitive right arm for quite a while. I remember waking up with my arm way over the side of the bed rails. I had a CT head to see where we’re at, it’s bad, loads of oedema but presumably the steroids have worked for now as I can now talk.
The plan is now to give time for the steroids to reduce the oedema, but find out more on Monday with another scan. Then fingers crossed then can have Pembrolizumab again, but I need to reduce the amount of steroids I’m taking.
Quite obviously caused quite a bit of worry. Understatement. It didn’t help that I’d forgotten my phone password and therefore no obvious way for me to contact Georgie. But by then I couldn’t do anything. Alice got hold of Georgie and by about early afternoon everyone was there, apart from Matt who’s trying to fly back from Australia. Matt and Rachel came too in the evening which was a nice support for my family. Everyone was desperately hoping for some sort of improvement. This, luckily, happened rapidly as by the next day there was a dramatic improvement in my speech and my headache was a bit more controlled. I had to relearn how to use my phone. It was very weird and I felt like my Grandad, who used to turn his phone on once a year just to keep his credit and then put it straight back in the box.
I’m now not for Resus, something I didn’t particularly want but I know it makes sense. Although I don’t feel like seeing the article, I know one exists where they tried to give CPR (cardiopulmonary resuscitation) to 500 or so people with metastatic cancer (cancer that has spread to different organs) and well, none survived.
My chances are clearly running out, but I have shown bouncebackability, the term coined by Ian Holloway of course. For now I’m remaining in hospital, I’ll try to keep you all updated. Sorry if I haven’t replied to people’s messages, I really appreciate them, but I have been a bit preoccupied and a massive side effect of whole brain radiotherapy is needing to sleep, a lot.