So I agree. Having a life changing diagnosis is something none of us ever want.
For me – for a very long time, I felt like a fish, swimming up stream, fighting against the tide. Fighting against what I eventually recognised as ACCEPTANCE.
Fighting against a tide, in whatever form, is soooooo tiring though, isn’t it.
Mentally and physically tiring. And it doesn’t even get you anywhere. It’s sort of a pointless exercise. Plus you might drown and that would be annoying.
To realise how pointless it is, takes time, though. This is how I see it, anyway. It may be pointless, but it takes a fair bit of swimming against the tide as I call it, to notice you aren’t getting any where.
I can’t tell you why one day I decided to stop frantically swimming the wrong way, and turn around and let myself go with the direction of the water, no matter where it took us. To bob along on the tide, and see what happened. It just happened. It took months though. Bit like when Forest Gump just stopped running. He just stopped, didn’t he, and turned round.
I DO think it had everything to do with acceptance. To stop thinking ‘why us’ ‘why my darling Gav’ …and to let the ‘why NOT us?’ in. WHY NOT US. Acceptance gave me a sort of strength.
I remember being at a school parents’ evening and feeling so cross and sad, and looking around at everyone who seemed to be just getting on with things, and none of them looked sad or cross. And then it hit me. I didn’t look sad or cross, either. How could I possibly know what any of them were going through? And how could they know what was happening to us?
Also, the initial fear and panic had kind of subsided, although our haematologist STILL couldn’t manage to be reassuring. I decided he couldn’t deal with a tearful woman in his office every couple of months. He is a well respected Doctor. Very well respected. But his bedside manner was AWFUL. Zero stars, if doctors were star rated like Ebay people, or Amazon sellers, or holiday companies. 5 stars for knowledge and treatment and ZERO for customer satisfaction. (don’t get me wrong, he treated Gav and got him in to remission, so obvs he gets top marks for that. It’s just how he made us FEEL that he dropped marks on. And he was already in the minus numbers after the terrible delivery of the diagnosis ‘you’ve probably googled it and I can’t cure you’ to quote)
You know that book I write everything in? All the questions, and, secretary like, all the answers. Through an annoyingly choked voice I managed to ask everything I wanted to – Gav, Lord love him had mixed feelings about my relentless Q & A sessions with the haematologist. He calls me his Rottweiler. I have his back. He would rather not ask, and then wish he had. And worry a bit. And then not ask again, the next time. I can’t bear worrying and would rather head worry off at the pass, by asking all the questions first. Mainly so I don’t end up terrifying myself on google at 3am.
One day I decided I wasn’t going to let my voice let me down. I was bored with feeling intimidated in the doctor’s office, and man, he’d better be ready. (Gav braced and probably rolled his eyes, lol) I had some things to ask, and I wanted answers. As usual he brushed me off. He spoke to me like I was a 10 year old trying to understand algebra. Except this girl had studied her ‘algebra’ and he realised it. At LAST he listened, and gave us proper answers. and we had a knowledgable conversation. And Gav and I felt so much better!! I also asked for a second opinion (literally thought my heart would jump out of my chest. Ambulance to consulting room!)) and we were referred to the nicest doctor we have ever met, at The Royal Marsden, who said all the things we needed to hear, and a whole YEAR on from diagnosis, we felt safe, reassured and a tiny bit more confident. Poor Gav was CRINGING all the way through, and I know I might be coming across as, well, a Rottweiler, but I LOVE HIM. This is his life we are talking about. I don’t really care what the doctor thinks about me. I care about Gav. And I think, even though he cringes, he’s glad I’m his Rottweiler.
The haematologist has just retired. We meet our new one in June. I hope she likes dogs…
As ever, thankyou for reading
ps The Silver Linings Blog Post that I promised, is coming soon!