One thing and another its been a busy week. Started with a visit to the GP on Monday, she is perturbed that despite I’m on my new super duper feeding regime through Lavita, my gastrostomy feed that Marion from the CENT team has carefully worked out for me and I am getting food pumped into me 20 hours per day, I still have an underweight BMI and haven’t gained an ounce. I’ve got that bloody awful feeling that I need a kick up the ass, I could lie on the floor and curl up in a ball and sleep. The Doc was also very concerned with the fact that I have difficulty with once of the most important things – getting washed. Our shower is over the bath, between my poor co-ordination, spontaneous hy0pogleamia, the pain I get and my gastrostomy tube climbing over the bath has caused many accidents: resulting in severe bruising and a hurt pride. Long and short of my GP visit: bloods taken, my steroid replacements have been increased for the time being, I have to visit her again soon. We need to get the bathroom sorted.
Its lanreotide week and boy do I know it. The bowels are flowing more than normal and for the third time the urgency at 3am disturbs my poor sleeping hubby. Buddy sits quietly at my feet, replacing the lovely warm slippers that I had no time to put on.
Evelyn, one of the nurses comes in on Thursday morning. The dogs are happy to see her. They know the routine and watch all that is going on. She looks at the two of them and says well you will have a wee wait on your ‘doggy mars bar’ today. Got a lot to get through with your Mummy. Gastrostomy site tackled first. Dressing taken off, all cleaned, the necessary done, new dressing on. Skin checked and other issues addressed. Then onto my lovely injection of lanreotide. It may be a big pain in the butt and cost the NHS a small fortune but it a godsend to me. My diahrea has reduced from over ten times a day to 3. And those awful flushes have greatly reduced. The run up to the injection the symptoms get more problematic but nothing like before I started getting it. I really wish it had a magic formula and helped with the malabsorption. Injection in, all sharps in appropriate box etc.
Evelyn takes a pew. Pulls out a white folder and talks to Steve and I. Remember last week I asked you some questions and you did well, she said. That was a base line for us for your mental awareness. Steve made an off the cuff funny remark and we laughed. Yes you can only go downhill she said. No onto some physical questions. It was all very thorough. Asking me questions such as can I roll over in bed. Do I need help with washing and showering. A great deal of emphasis on my meds, eating, all the personal issues such as my bowel habits, aids I need and use, what I can manage and what I CAN’T. As always Evelyn was super efficient; making me feel so comfortable and at ease and still managing to get all the appropriate essential information that has to get detailed down. The nurse is an angel she goes above the call of duty.
It was good Steve was here for all the discussion. Evelyn already knows how much I rely on him and how difficult things are such as showering, setting up feeds, getting my medication organised – we didn’t need to go into the nitty gritty.
The outcome; I’m an at risk patient. BMI far too low. At risk of falls. Has pain. Risk of infection. I dolly daydream into a daze, I furniture walk without realising it. The one thing I certainly cannot do is get up of the floor on my own. Give me a piece of furniture or better still my devoted strong man – Steve. I love this man 💕💕