2nd (now 3rd!) liver resection cancellation - how do I deal with this?
Hi everyone, I've been off the forum for a month or so as I really needed a break from thinking about BC for a while. I had my 6th cycle of Folfox in early Dec, the results were great and I was given a date for my liver resection, had my picc line out and and was feeling really positive.
My initial date was admission on 24th for surgery on 25th Jan and although that meant a 7 week wait from my last chemo when I'd been advised 4-6 weeks I was happy and relaxed about it all.
Two weeks before this surgery date I got a call and was offered an earlier date - admission on 16th for surgery on 17th - Great!
On the morning of the 16th I was called, no ward beds available tonight but could I go in for 7am on the 17th. This involved a very early (4:30) start and nil by mouth from midnight. We turned up and I was processed through the barrage of questions, bloods, etc. I was told I was first on the list an should be in surgery by 8:30. It then became apparent that there would be a delay and eventually I was sent home at 12:30 as there were no ITU beds.
The next day I was called and offered another date - admission on the 22nd for surgery on the 23rd (today). This time I was admitted to the ward, had a very disrupted nights sleep (bloods and a painful failed attempt to put in a cannula at 2am) and again nil by mouth. Again I went through the process, told I was first on the list, changed into my gown by 8 and I waited. The surgeon then told me I should have a CT scan but didn't really explain why. This was done fairly quickly and I was back to the ward fully expecting to be in surgery quite soon. The hours passed and nothing happened. I asked the nurses and no-one had any answers. By lunchtime I was getting quite stressed, went to the desk and eventually spoke to the ward manager who said he'd contact the surgeons. Still no news although it was obvious to me by 2pm that I wasn't going to have surgery. Eventually a surgeon turned up just after 3 to confirm that my surgery was cancelled and I could go home. I asked why the CT scan and he said it was to "buy time", the scan showed the 2 liver mets are stable. I was in tears, feeling very stressed and upset at yet another cancellation. I just feel like the CT provided them with an excuse - I'm no worse so not a priority! He also advised me to make a complaint because the "management" are not getting the message about the lack of ITU beds. Before I left the hospital I called in to PALS and told them what had happened. It seems there are two levels, a query about treatment which will get a quick response or a formal complaint which takes 6-8 weeks. I went for the quick response but am now wondering if I should have escalated it? No food / drink for 24/12 hours is not conducive to rational thought.
I feel utterly devastated, I'll probably get another call and another appointment in the next few days but I really don't think I can cope with another cancellation. My only (slim) chance of a cure (yes they are still using that word) is to have a liver resection then mop up chemo. But what if my next appointment ends up like the first two. I'm not sure I'm strong enough mentally to cope and I'm convinced each cancellation is another step towards "incurable" due to stress and delay giving my cancer time to spead.
I'm sure it won't feel quite so bad in the morning but I need advice on how to cope and what, if anything, I should do now? I have to accept any appointment I'm offered but how do I make sure it will go ahead next time or prepare myself mentally if it doesn't?