So we travelled to Cardiff to see Consultant. From day one he has been lovely and caring and despite my rare lapses of trust, I know he has my best interest at heart. We arrive and get called in – usual pleasantries and Stephen is complimented on his 3 stone weight loss. I had already sent a list of questions to his secretary in advance of the consultation and I could see it in my file. He presented us with a letter he had written to his colleague in London and asked us to read it to ensure we agreed with the content prior to it being sent. It made quite sombre reading as my vast surgical history spilled over the pages. Then came the reality bit where he said how the operation in March had not only failed but resulted in respiratory arrest and as a consequence we had come full circle and were back to square one – I had a complex fistula deep in my pelvis. So so depressing. He said he wants me to go to London as this guy is The Expert and whilst he probably can’t change anything, he can reassure me that I’m safe and possible put me in touch with other sufferers. I told him I had met a few people on line with similar problems but most of them had chrons or had had damage to their pelvis by cancer treatment. As far as I was aware, I didn’t fit into either of these boxes. He agreed and said my problems had probably been caused by surgery and the gynaecological condition endometriosis that I suffered from. Why does it hurt so much when someone tells you something you already know.
We drove home in silence, I felt sad, angry, relieved, tired – you name it, I felt it. Thing is you move the goalposts when you are plunged into these nightmares. When my lungs failed, I just wanted to be able to breathe unaided and when that happened I wanted to be able walk more than a few steps and when that happened I wanted to eat real food and when that happened I wanted the holes to heal and go away forever. That never happened. They did heal but not fully and everyday I’m in at best, discomfort and at worse, pain and despair. I’ve lost my Happy and I want it back. I did feel happiness today when my beautiful little granddaughter was so delighted at her new postman pat toy and gave it and me a massive hug and kiss. I was happy when my nephews called and gave me a hug – they are 8 and don’t really do hugs but I got one, I could feel their happiness at being home ( they’ve been away in Bristol) and I was so grateful that Chris ( my daughters partner) had taken them bike riding. They came back and fore for ages for sweets, drinks and snacks and I was happy they felt comfortable doing that, knowing that aunty was always here for them and hoping that they hadn’t notice the sadness in my eyes. Plus a silent prayer that aunty would be here for them for some time to come. But we are all in that boat aren’t we yet I feel I’ve come too close for comfort and it scares me.
So that’s the situation to date. No change – take each day as it comes and hope for the best.