11 days without food is not good at any level especially when you have a significant amount of healing to do. My body had been through so much and my levels of albumin and protein were very low, this is probably why the repair failed as my body put everything into keeping me alive. Compared to the ability to breathe, bowels take second place. So whilst I am eternally glad I’m still here and my lungs are slowly healing, relalisation dawns that I am actually back to square one, possible even in a worse boat than before. Tonight I will start TPN – Trans parental nutrition. This is basically a liquid feed that is administered via my central vein. It provides me with everything I need and can be tweaked to include more of one thing and less of another, based on the results of a blood test. All very scientific. To need TPN is quite a blow – this wasnt expected but then again none of this was. It’s a temporary measure and will help me gather some strength and get my body healing again. I have no choice – without it I will starve to death. It carries risks long-term but I try not to think about it. Some people, for various reasons need permanent TPN and have it at home (HPN) – this is my worst nightmare. I like food and drink, doesn’t everyone? I love going for coffee and having a glass of wine – I would find it very hard to accept if HPN were my future but I try to blank that out of my mind. My stoma, which I have had for 30 years isn’t working, the gruesome bile continues to come out of the drainage tube, which is slowly but surely forming into another fistula. This is quite devastating for obvious reasons. It could be that once I heal a bit more and my gut starts to work better, the balance could change with the stoma kicking into life. If that happened there is a chance that the fistula would heal. I’ve has so many knock backs that I can’t even begin to hope that will happen. I hope that if I am left with a fistula it will allow me to eat and drink. I don’t mind wearing another bag but there is so much uncertainty here I try not to ruminate. I’m not sure I would ever be be brave enough to have more surgery as it keeps going wrong and this time nearly killed me.
The nurses in HDU washed my hair today. It wreaked of vomit, sweat and fear and I wanted it fresh. So a very efficient boss nurse with clip board was on a mission and she said I WOULD get my hair washed and she made it happen. We had to be careful with the central line but we managed and I was left with mammoth task of drying it. Since when did a hairdryer weigh a ton, or maybe it was my arms that suddenly had no strength – I slept for two hours after!
The boss physio came round. Early thirties I’d say and quite handsome. He wanted me walking and helped me to the edge of the bed whilst he gathered all the tubes and drains. I felt like a bloated whale and was embarrassed to make eye contact despite my sick – free hair. I stood up and felt as weak as a kitten. But he took my arm and encouraged me every step of the way. It was hard. When I stood up I felt like everything was stuck under my diaphragm -walking would soften this he explained. I did about 100 steps and collapsed back onto the bed. He said well done and ‘get those dancing shoes ready for tomorrow as I’ll be back’. They are so committed, so caring – it really is the NHS at its absolute best.
Stephen and I sit quietly just holding hands, no words needed. We’ve been married 36 years this month and have argued and bickered for much of it. But we have been through loads from the Falklands Wat keeping us apart for 9 months, to him leaving the Navy and hating civvy Street, to him joining the Police, yet more stress and always underscored by my Ill health but we survived. This has really affected him, he is tearful and desperate for me to be completely out of danger. We hug a little closer now, it puts everything into perspective.
Give thanks for a little and you will find a lot.