Monday, 10 February 2014

Unstable Mable

I found out last week that my very brilliant consultant (hereafter referred to as "The Prof") is moving on. He will no longer be the star around which all broken bowel people revolve.

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. 


  1. I know how you feel..........
    We moved to a bungalow in late 2012 (new area) and have had to get used to a new GP. We had been with the same one for 20+ years!
    It is highly stressful and a difficult slow process. This at that same time as the ESA farce all started to kick off - appeals & all - & unsure of your medical back up.
    If possible don't do it - really not a great experience!

  2. My sympathies Sue on losing both the doctors that you trust, I truly hope that your next ones have that "safety" feel to them and that you all get to know each other quickly.
    I would be lost without my GP, he has really come to know both myself, and my hubby over the past few years. He gives me the confidence to be myself and not just a patient, and he understands my various moods, pain etc.
    My old consultant made a huge mistake with me which ended with my leg having to be amputated! After he had ruined a perfectly simple operation I refused to see him again and changed to a new one. He's brilliant :) He waited until I was ready to have the amputation (9 months after the original operation), he supported me and he made me laugh out loud - and that is something that I rarely find and that made me sort of love him :)
    I'll keep everything crossed that your new docs are just as great as the ones that are leaving.

  3. Sue so understand - I so hope you find anothr "Prof. and another good GP. So important.

    for most of Dani's life she needed good medics that understood that it is hard to be a child then a teenager then an adult with scary things wrong with you. The paed doctors were all good, the ones that looked after her when she had cancer as a teenager were brilliant - they understood that two way discourse was needed - then she went to that other place and it all fell apart - no empathy - no knowledge of how hard it is to be in and out of hospital - how lack of privacy and lack of control of life is hard to come to terms with and of course they claimed they knew it all - endrocronolgy was considered unimportant, why talk about wanting babies if you know you are sterile - all those sorts of things not important. Dani was expected to organise her life around the hospital not the other way round as her life was not important. Hard to believe that such a turnabout could happen. So sometimes we took things into our own hands much to their annoyance always being told that it would adversely impact on her health. Sometimes Dani needed to be in charge. Many who are not chronically ll have any idea how important a good consultant is.

  4. I totally understand what you are talking about. I have mental and physical illnesses and meeting new doctors is always such a pain. I hate losing a good doctor that you can trust and that has your back. I am so lucky to have a fantastic CPN who does all she can to help and support me and has done for years but I find myself panicking about when she will retire!
    I hope another doctor comes on the scene that you take to quickly. Big hugs x

  5. I completely understand and have been there myself. In fact, I'm in the same position again, just as you. May saints and saviours float your way very soon. Take care.

  6. I hope your medical team see this Sue. Know the feels and many sympathies. It's so hard to go through it all with new people. We're rooting for you and sending Internet hugs though!

  7. all my consultants leaders in their field starting with the late sir Alan parks in London have all moved on in to retirement and have all been first class with their treatment of me since 1980 despite the fact they couldn't cure me we have always been good friends on a professional level

    as for their peers that look after me now all i can say is there no where near the level of expertise and are found wonting in all areas a bit like David Cameron i find plenty of talk but not much else

  8. Unstable Mable, sit's at her table, waiting for a saint and a saviour. She feels that she must, have someone she trusts, to help control her bodies' behaviour. We all hope she will find, a caring Doc' who is kind. May it happen very soon, Mable's stabilizing spoon.

  9. Oh so very frightening, the great unknown(s). I totally empathise and constantly dread any of my good ones retiring or moving on elsewhere, and have quite a tally now of docs & consultants I refuse/d to see anymore. At least (for me) in a densely populated city like London there is more of a choice to change GP or hospital, but still, only so much choice and it's exhausting going through that process and the whole rigmarole of getting to know & trust each other, hope hope hoping you have an intelligent caring supportive human being there for you. Less choice elsewhere. I'm really sorry you're losing The Prof & GP at the same time, pleeeeease let the new ones be saints and saviours. It is as much a life support as the drugs and ops. Actually my GP & Nurse Specialist both retired April last year (wanted to get out before the latest round of nasties to hit the NHS methinks, don't blame them) and I have a new fab nurse and even better GP now! Fingers and toes and all my cat's paws crossed for you that it works out. xx

  10. It's frustrating how invisible this disease can be - my blood tests never seem to show inflammation either, no matter what state I'm in. As for my consultant, his most recent prescription was 'lots of chocolate, cakes and biscuits' to help me put on weight - the very things that irritate my insides the most! I hope you fare better in your new doctors.