Losing control

Very interesting and thoughtful post Wellspring. Something I watched people with degenerative conditions wrestle with as well . I think to a point we take for granted our abilities and the future . I can’t directly answer your questions but I will run it by my mum .

From an observational position around the two year mark I noticed she was depleted of strength and her bounce back was slower . She had been through so much at this point and her consultant stated that even those with the most well constructed defences dip at some point . However I noticed she slowly recovered her vitality and the questions slowly became less pressing . From afar it seemed to me that she had been shaken, but strong. Lost confidence in her health and had to learn to roll with a set of circumstances out with her control that involved subjecting herself to often painful procedures , slowly regaining ground with set backs along the way . Then a few clear scans came into play , a quite confidence in her health recovered and normal life crept back in and pushed it to the sidelines . The scanning process opened up to longer timeframes which allowed more living .

We were also big believers in planning things . Sometimes in the near future to begin with but gradually normal holiday schedules too . This became her focus and she directed her energies there . 

She has had two recurrences the last one was four years ago . She had a lung met removed . She was strong again by that time and it was by far the easiest . She has had so many scans , well over 25 . But she also trusts the process . They picked it  up at 2 mm and operated at 7 mm . They have taken such good care of her . 

As she gets older I do wish it would end but funnily enough she now takes comfort in the scans and regards it as a safety net .

Somewhere a long the line it became her life again lived with a chronic condition that requires hospital assessment . This will be her 11 th Christmas since her initial stage 4 diagnosis. 

She did say that she never really thinks of cancer within her body so maybe that’s a pulse psychologically. I will however ask her for you . That’s my perception of the last decade of her life anyway . 

Take care ,

Court 

Wellspring

Thank you for saying this. I am finding the psychological issues harder to deal with than the physical ones. I battle with control issues. My husband says that control is illusory. I am coming to terms with that but I still struggle with waiting for results and treatment decisions made for me, not with me. The MDT system is great from a pooled knowledge point of view, but I don't have any input or access to their decision making process. I am just told the outcome but never the why. 

I have decided to have a private consultation if necessary so that a Dr can tell me why they are considering waiting for another few months and another scan before deciding on treatment for my growing 8mm lung nodule that is reported as 'highly suspicious' on the PET scan report. I get letters from them but I don't get to talk to the Drs face to face. I hope that a private appointment will remedy that.

Talking about leaking bags, I had an ileostomy that leaked spectacularly twice in posh restaurants and numerous  times in bed at night. Over the nine month period that I had it, it was not unreasonable I suppose but it made me acutely anxious almost all of the time. Every time I rolled over in bed I would feel for my bag to check for leaks, probably twenty times a a night. I got to the point where I was no longer enjoying meals out in case it leaked so they became less frequent. It started to control me. There is a saying, "a life lived in fear is a life half lived". I am trying to live fully but it is a huge task. 

I don't have any answers, I just keep going and hope that it will get easier with time. 

I hope that it gets easier for you too, you are not alone in this

Nicky xx