It’s the wee small hours and my mind is settling, reaching for and starting to find acceptance. I keep reaching for recovery and for the day that I’ll feel better and it keeps slipping through my fingers. I feel a bit better for a day or so and then find myself back at square one, clutching the bottle of oramorph in one hand, antiemetics in the other and wondering whether to get myself to A&E.
I’ve had four different antibiotics in the last few weeks and I think any latent infection in my kidney has been seen off. I’ve had two CT scans and two different opinions on what they show. The A&E interpretation is that the perinephretic threading they can see is infection related inflammation. Oncology interpretation is that the same threading may. be malignant spread. I don’t know who’s right and time will tell, possibly after yet another scan on Friday.
I do know that I need to manage the situation in front of me. It’s time to talk to my GP and the hospice nurses about managing the pain rather better. It’s time to stop fighting and accept things as they are here and now. I don’t mean that I’m giving up but I think the notion that I’ll get over this blip is a mirage. I think I’ll have a happier holiday in Slovenia next week if I accept my physical limitations as they stand and concentrate on enjoying myself.
I'm sorry to hear that you are not feeling as positive as you normally are, it's so very understandable after months and months of reaching for that holy Grail, only to see it slipping from your grasp time after time.
You're not giving up, far from it. Sometimes we have to sit back and view the whole picture from afar. Pain is an unbelievably wearing down of the spirit. If you can get advice from your GP and other medics about how to manage the pain, that's a great step forward. I have been given a leaflet from my GP about pain management and the GP won't enrol me, I have to do that, then I'm demonstrating a will to undertake the course. I can't remember exactly who runs it, the leaflet is back home, I'm spending a few days with my daughter and grandson in Peterborough.
One course which I have undertaken is to go to the hospital's chronic pain unit where he has reduced my morphine intake and started me on another nerve pain medication, increasing it by 10 mg each week. Is it working? Not sure, but yesterday morning I woke up again in pain and had the idea to count how many areas of pain I was experiencing. There were 5 separate areas! I reached for a morphine tablet because I had to try to relieve the pain or I wouldn't have been able to function.
Daloni, I have read of your jourrneys to search for a cure for many months now. You're a very brave lady, entering into the realms of searching for a panacea and the discomfort that comes wrapped in the same packages. You're aware of the possible side effects yet you venture again and again and again. True grit.
I really hope that you can achieve some form of pain management. You know where you are and your limitations. I expect that you will benefit from that and truly enjoy life with your daughters, and also, remembering your limitations, enjoy breaks in Slovenia and elsewhere. If you love chocolate, and who doesn't, I'd recommend a trip to the Cadbury factory in Bournville. I was there yesterday with my wife, daughter and grandson. Seeing his face when I told him that the chocolate that he was squeezing from the tube, he was allowed to dip his fingers into and lick it off, was a real picture of delight. Of course, as any 3 year old would, he began to see how much chocolate he could get on his hand, before slowly and deliberately devouring it! I don't understand how he wasn't sick, however he was bouncing around continuously, well past his normal bedtime hour!
Enjoy your trip to Slovenia next week, Daloni. I'll be interested in how you get along.
Thanks tvman. You’re right. It’s not giving up but learning to live with. Rather than thinking “if I could just get better I will enjoy Slovenia” I need to be in the mindset of “this is where I’m at and I am going to enjoy Slovenia regardless”.
Chocolate. Mmmm. The picture you paint of your grandson makes me smile. I’ve discovered Aldi dark chocolate with hazlenuts. It’s seriously good chocolate. Co-op do a banging dark chocolate with salted caramel too.
I hope you’re able to keep on top of your pain today.
