Let’s start with good news for a change. Tickets for Kendal Calling have arrived, well at least they’ve arrived at Debs. Just as long as she remembers where she put’s them when the time comes. It always makes it more definite when the tickets arrive, and I’m really looking forward to it now. Still waiting for the Green Man tickets though, they’re due to be sent to me. Waiting and worrying is all part of the ritual, but I have to say it’s nothing like waiting for Glastonbury tickets to arrive. That’s a gut wrenching experience and can last for weeks and weeks. Only fellow Glasto goer’s can understand what I mean. Anyway, it gives me something to focus on for the summer ahead, as I keep reminding myself as I struggle to get over surgery.
I’ve had nurses coming and going all week, wounds dressed and re-dressed. I’ve been referred to a physiotherapist to re-assess my needs, bearing in mind the fall. I’m still a bit wobbly on my feet, even with sticks. My legs are aching all the time, standing, sitting, lying down. They’ve suggested a zimmer frame, can you believe it, a zimmer? Everything inside me says NO. Another nutritionist has been arranged, I’m still losing weight, almost back to my lightest ever adult weight when I was with M. That was due to almost non stop festivals, gigging, clubbing and partying. I am eating, and hardly burning any calories, so I don’t see where the weight loss is coming from. I didn’t need to go to the GP in the end, which was a blessing. I can do without the travelling. Between them they have arranged to double the dose of my background pain killer (Targinact) so I’m hoping this change will be beneficial…..soon. Because I only had enough tablets to last me a week at single dose, I was left without tablets for half a day whilst I waited for them to be delivered. This resulted in a five hour gap without any medication, and it was noticeable almost instantly. Pain is an awful thing to bear, and when it’s constant it really drags you down. Every movement, breath ,twist, even frown brings a tear to your eye. I’ve been warned about possible depression, usually 4-5 days post op, but mine seemed to hit me yesterday. I sat down, still in pain and all of a sudden realised how helpless I was. I wasn’t living at home when my mum went through the same operation 25+ years ago. We didn’t particularly talk about it much, but the one thing that has always stuck in my mind was her insistence that she would never put herself through the same surgery again. For the first time, I could understand exactly what she meant. Even 25 years later, with better surgical techniques, better analgesia, and far better care, my body feels almost destroyed. The effort required to do even the simplest things is tremendous, and I never seem to recover from the previous effort before the next is needed. This looks like depressive writing doesn’t it? I’m trying so hard to be positive, but have to concede that it’s very difficult at times. It’s hard for me to admit it, even to myself, but as I sat in that chair I just burst into tears, almost uncontrollably for half an hour. I think it did me good, made me realise what I am and not capable of. I’ve made a few decisions about the future, the sort of things I should be concentrating on, the things that are really important to me. My fiercely independent nature is at times selfish, and I’ll be doing things to change that in the future. I’ve had no life changing cancer moments, I still know what’s important to me, I’m still positive and determined, but I think a few tweaks are required to show my appreciation to others, and of life itself.
Friday was a nurse free day. It’s nice to be cared for, but so many nurses arriving on a daily basis can wear you out in itself. I’m still not sleeping terribly well. Seem to wake up almost hourly whilst it is dark, using the opportunity to top up with Oxynorm through the night. Dawn is getting earlier by the day, and at the first sign of light my curtains are open. The winter grey skies are being replaced with various shades of light blue, clouds are less intimidating, even when you know that rain is on it’s way. It makes me think of summer, it makes me think of Kendal Calling, and Green Man -when the bloody tickets arrive.
For some reason I sleep better when it’s light, and being a no visitor day I made the most of it, staying in bed until almost noon. It was an attempt to build up a meagre amount of energy reserve to enable me to take the short walk to the Post Office. First time out in a week, and although it took me an eternity at least it was fresh air and a change of scenery. I had letters to post, and as I’m still looking for home help, a post card in the post office window. I hope someone see’s it and gets in touch. I’ve tried the agencies, a couple are coming to see me on Monday, but they are expensive, I’m not sure just how much help I can afford, then again I’m not sure I can afford to be without it. It’s not just for now, I want something in place before I begin the next round of chemo, and before surgery on my liver. I know what major surgery is like now, I know what to expect. I could almost have sunk into another depression as I gently tentatively lowered myself onto my newly acquired cushion on my armchair. Such a lot of effort for such a small return. The threat of further depression lifted on receiving one phone call. She has a sixth sense I know she has ! Bexx (CNS) from The Christie phoned, just checking, again. How am I getting on?…how’s the pain?…..am I eating?…….is the cushion helping? She suggested, no, insisted I carry on with the top up painkillers. I don’t like to, I should be reducing it now the background analgesia has been increased, but she insisted I carry on until things settle down. She insisted I phone, anytime day or night, if the pain isn’t under control. “We’ll just have to bring you back in and look after you”. I still ended up with tears, not from depression but from being humbled by other peoples kind and caring nature. Who needs private medical care when the NHS is as good as this.