Thursday, 6 January 2011

It's all so quiet.

Well I'm sitting here all alone contemplating life, the universe and everything. I've come to several conclusions but I'm not sure that most of you would want to hear them.

Life is so fluid. I'd sort of noticed before but the last fortnight has been like watching the sea come in and out. The first week we were relieved by the care Mike received and privately celebrated how safe we felt. The second week and we have wondered how different things might have been if we lived further North or further South. Or I guess if we had known more and asked for that second opinion elsewhere. In essence the second week has landed us with a doctor who for some reason cannot abide Mike. I haven't imagined it all. I heard what was said by the consultant and I then saw how she deliberately disregarded his decision.

What would Mike's state of health be if he had been given his SCT in Liverpool, or London, or Nottingham, if he'd had a room to himself, had a team of doctors who only wanted the best  and will the questions continue as we find out the results of the last year's treatment?

I have come to one very important conclusion. I'm proud of the blog Mike and I have written. It hasn't always been pretty, but it has told it how it is sometimes. For patients and carers there are rough times on the journey and if we don't accept that, we can't move forward to pastures new, where we can sit quietly and hopefully not hear the ticking.


  1. Ah sweetie, there's nothing to be gained from the "what if"s although we all go through them from time to time. As carers, we are often over-sensitive to stuff too - so you may just have witnessed the results of stress / tiredness / over work on the doctor rather than an actual dislike of Mike. I hope so anyway. We have to trust that they are professionals, even though sometimes we feel like shaking them! Sending strong thoughts.

  2. I'm afraid to say it wasn't just a one off, she has disregarded Mike's requests several times and the nurses too know exactly what is happening.

  3. Oh, Lorna, I'm so sorry to hear this. There is no excuse for that behavior and no one that is going through what you're both weathering should have to put up with that. The second guessing is so haunting to us all. At some point, you have to try to let it go and deal with only what is in front of you right now.
    As for your blog, it's wonderful and we all need to vent. I vent about lots of things but it helps to get it off my chest. We're all on this MM roller coaster with you both and certainly understand the highs and lows.

  4. If there is a certainty that the doc is not listening to Mike's requests, lodge a formal complaint with the nurse in charge. Insist that your complaint be put 'on the record' in his chart. This will become part of the doctor's information and hospital report and if his/her professionalism is affecting the quality of care for Mike, it will be officially noted.

    You have another route as well - a formal letter of complaint to the hospital administrator who MUST take action if a patient's care is being compromised by personal issues with the staff...

    And at least if you are doing these things, it helps with the 'out-of-control' feelings that your situation has you in... and I send you supportive intentions from the jungle... and hugs.

  5. Firstly, when Sandy's hug arrives make sure you disinfect it because it could have picked anything up in the jungle.

    I'm just at the point in Hitchhiker's where they have all just ignored Marvin's proclamation that he knows 'the question' and are plummeting towards a sun in the stolen ship! Kinda of really sums up your post!