When you've suffered from a serious, long term illness for most of your life, it's hard to know how to express to other "ablies" just how important a good consultant can be. They literally hold your life in their hands. Not just your physical life but your quality of life, your mental health, your ability to plan for and hopefully enjoy at least a little of your future.
A good one sort of settles into a place of advocate, parent and God. They must care about you and believe in the person that you are, not the person they assume you might be.
It takes years to build up a real relationship. As time goes by, they start to see you in your various different states of being. In my case it might be begging them to let me out on "day release" from hospital to get to an important media or Westminster event. Or maybe bearing pain they don't often see people tolerate. They see you feisty or ground down, logical or illogical. They must build up a picture of you during precious grasped snippets from rushed 10 minute appointments, frenzied ward rounds and secretarial filters.
Add a pinch of awkward Suey and her recalcitrant bowels to the mix, who never knowingly behave the way a doctor might expect them to and it can take a LONG time to build up the rapport you need.
After 18 years, my old consultant knew me often better than I know myself. He always had an instinct for when I needed urgent surgery and battled for me to get it from the uber-elite surgical Gods. It might surprise some of you to hear that the opinions of some of the world's leading bowel experts count for nothing with a surgical team. As soon as they are bought in by the medics, they insist on running many of the same tests all over again, ploughing through all the same steps you've already taken with the medical team, answering all of the same questions.
My crohn's has never behaved "normally". (If indeed there's ever a "normal" case of bowel disease) Scans fail to reveal my hidden nasties, blood tests never register inflammation and thermometres never show raging temperatures. It took at least 5 years for even Super Doc to really believe his own eyes and learn to make his decisions on based on what I'm telling him is happening, when all the evidence shows the contrary.
Super Doc also saved my life countless times, and I don't think I could find the right words to sum up the enormity of what that means to me and others like me. You end up with enormous fondness for them, laced with a sprinkle of awe and a good dollop of gratitude.
But I lost Super Doc a few years ago (some long term readers might remember the "Debacle of the Other Place") and transferred to a London hospital. Now, even The Prof is leaving me just as he started to build up a picture of who I really am. (And I flatter myself, maybe even came to like me a little bit too.)
In a boringly familiar twist of Suey fate, I'm losing my lovely GP at the same time too.
She defended me against The Other Place, believed in me when few would have dared, supported me through DLA and ESA applications and generally made my life easier to live in so many different ways.
It feels like I've been abandoned by the medical Gods yet again. Like a grief, I have to simply tolerate it and hope that whoever takes my shell of a life in their hands next has compassion, empathy and intelligence. (Don't ever think that's a given, it's not) I have to hope that somehow life and circumstance gives me opportunities to show the newbies who I really am and what I need quickly, before the next crisis rears it's ugly head and I REALLY have to depend on them.
Somehow, yet again, I have to wave goodbye to the little bit of security I've built and start all over again. Like losing a parent or a partner and trying to come to terms with the fact that you'll never be able to rely on them again, that they won't be there when you need them most, in your darkest hours of pain and terror.
The sheer dread of what might follow makes it hard to breathe. If I think back over the 3 decades that I've suffered with Crohn's disease, there are saints and sinners, saviours and bullies in almost equal measures. All I can do now, today, is pray that the saints and saviours are sent my way.