Wow is all I can say, it may feel like the NHS drag their heels in ordinary circumstances but when it all goes wrong, watch them move. I have never been so reassured in my life as I was over the next few days. We got our phone call and were backwards and forwards to the Oncology Department at the Wessex Neurological Centre at Southampton University Hospital Trust.
http://www.braintumoursurgery.co.uk/MDT.html – Dr Geoff Sharpe is the man dealing with my brain tumours, I’d trust him with my life, well I guess I already am.
I was assigned two consultants, one to deal with my head which was the immediate issue – Dr Sharpe as mentioned. Professor Christian Ottensmeier is the second and he now seems to have taken on my overall care including dealing with my chest tumours.It was immediately apparent upon meeting them both that these people knew their stuff, were talking regularly and they had come up with a plan.
It was explained to me that the biggest threat to my life at that time were the tumours in my head which were displaying all the signs of bleeding and I was therefore at high risk of sever neurological damage and immediate death. The situation needed to be tackled without delay. Within 4 working days of the diagnosis I had been sized up for a face mask – which they use to get your head in exactly the same position each time – and booked in for a 10 day course of Whole Brain Radiotherapy. There’s nothing subtle about this, they needed to put the brakes on, stop the bleeding by essentially giving me a huge whack of radiation energy. This link gives you an idea of what it’s all about http://www.macmillan.org.uk/Cancerinformation/Cancertypes/Brain/Treatingbraintumours/Radiotherapy.aspx
I was to have 10 sessions of emergency treatment, which involved me going to Southampton hospital Mon – Fri for 10 sessions. It was an hours drive from home which was the most exhausting thing for me. Yet again the Army stepped in and was able to provide a vehicle as it would do for anyone in a similar position. With my diagnosis and risk of neurological failure I had of course immediately lost my driving license. Officers from the Regiment volunteered and took it in turns to drive us – Shelley, Mac, the two Matts, Murray, I can’t thank them enough. Not only did they put up with my increasing grumpiness as the treatment and therefore extreme tiredness took its toll, but they also helped raise both mine and in particular Kady’s morale.
Okay, I’ll let the pictures speak for themselves:
- As time went on over the course of the 10 day session I began to feel steadily more and more tired, which is a natural side effect of having your brain purposefully burnt. Mentally I was on fire from the steroids, physically I was an absolute wreck. This was all compounded by the pressure we’d put ourselves under with the planning for the wedding and my inability to sleep due also to the effect of the steroids. I was constantly fighting to stay positive but inside I just felt horrendous. One of my biggest problems after the WBRT was just falling asleep randomly, literally whilst speaking to people. Although inconvenient it was nice to be getting some sleep again although it didn’t last for long. I just learnt to roll with it! The steroids also make your major muscles waste away and your face get fat. Not the best look! I think the worst thing is just losing all your energy, one days activity I’ve found can leave me drained for up to five days after wards.