..or, learning to live with a new reality after a cancer diagnosis and treatment.
Friday, 3 June 2011
Second update post-op!
Good morning from the back garden of Sweeting Towers, where I am ensconced on the swing seat with my laptop, phone and a cup of tea, under the tender care of our son - Neil has gone back to work today for the first time since I came out of hospital last Thursday but I am not yet able to be left on my own for any length of time, as I can't lift anything etc, so I have to have a babysitter :-) Still, the weather is glorious and there are worse places to be than a sunny garden in early June, with glorious birdsong and the scent of early roses.
This is the latest update on my journey along the Cancer Highway - edited highlights!!
I got my sutures out yesterday, which was a little bit ouchy but a relief to have them out and be able to start to wash my neck properly! The scar is about nine inches long, starting in front of my upper ear and then going behind the ear, across the back of my neck and then about halfway round the front. My consultant had a long chat with us and didn't really tell us anything new, other than that, as the swelling has gone down on my left eye, it's not closing quite so well, which isn't particularly good news but it is early days. He said I can return to exercise in a few days and try for a run end of next week- he's a runner himself and he knows how much being able to exercise will help my recovery. We have to see him in a fortnight to review the pathology results from the operation and he has confirmed that I will be having heavy radiotherapy as the tumour didn't have a big margin around it when he removed it so they need to zap me!
Next, on to physio - I have lost the accessory nerve in my left shoulder as part of the collateral damage from my operation. It's the one that lets you move your arm out from the side of your body and then raise it, I can move my arm out but only raise it to just below my shoulder and the other muscles are starting to stiffen, so I have a set of exercises to do three times a day and a return visit to the physio! Then on to the speech therapist. She didn't give me exercises for my speech, although I think she will later, but she has given me facial massage exercises to stimulate messages to my brain from the left side of my face, so the brain remembers I had a nerve there, She attached electrodes to my face and asked me to do various things, like raising my eyebrows, counting, smiling etc and measured the activity across both sides of my face. Somewhat surprisingly, given my consultant has removed the facial nerve, there was considerable activity on the left side for some of the exercises. The speech therapist was surprised at this and said she would let the consultant know. I am not naive enough to think this means I have a facial nerve there, but it might make future surgery more of an attractive option. Any aesthetic work won't take place till well into next year, though.Yes, I could well be having a facelift on the NHS!! I've also asked for a referral to psychological services, as I realise I need to process a lot of difficult stuff, all of which has happened very quickly, and that there's a lot of anger, sadness and grief I need to talk through.
I am realising what a long, slow road I will have back to normality - or, more accurately, to my new "normal". I can't speak highly enough of the NHS, which is caring, compassionate, joined-up and treating me as a person, not just a patient. I do feel in very safe hands and that will be vital over the next difficult few months, when I will be feeling weak and despondent as the radiotherapy takes effect. The people who have seen me so far have all said that I look much better than they expected and that I sound almost normal ( I think a few of them were expecting I might have lost my Scottish accent, but they've been reading the wrong newspapers, I think!) so that's comforting to know that I might not frighten young children and horses when I present my face to the outside world. I am keeping notes of how I feel each day - not a journal as such, but something I can look back on and see what progress I have made - and that is helping me articulate some of my thoughts.
Finally (phew! you say :-)) thank you for your support, your prayers, your positive thoughts, your cards, gifts, everything that you have done to show me that you are holding me, and my family, in the light. It truly makes an immense difference to have such a fabulous support network.