Hello everyone. I hope your week has been ok and that you have found some light and refreshment this weekend. I’ve had a mixed week. I had my usual monthly IVIG (intravenous immunoglobulin) infusion followed by a clinic appointment on Tuesday. Unusually I couldn’t make my regular week so the lovely reception staff booked me in a week earlier. Unknown to them and to me this caused a problem with the IVIG. There hadn’t been enough of a gap so pharmacy wouldn’t supply the medication. As a rule my wonderful team try to cut down how often I have to attend the hospital. We all try to co-ordinate things so that I may have several appointments in the same day. Sadly this didn’t work on that occasion and I’m going to have to go back next week for the infusion.
Despite this irritation, I still managed to get a few things sorted out. When I arrived at 11.30am I knew I needed some medications. I asked the staff in the supportive therapy unit and they said it may be better to ask the consultant as one of the drugs they couldn’t prescribe. I knew this would delay things so I spotted the Clinical Nurse Specialist (CNS) and she said she would get it sorted. I saw Victoria, my ace consultant. We talked about tying all the things together that are going on. My neck scan continues to show some narrowing, this could account for the numbness and pins and needles in my hands and arms. Victoria is going to follow up with the neurologist. I’m still slowly coming down on the steroids. Victoria wants me to do this final bit at a snails pace and only come down by 1mg maybe once a month. I’m certainly getting a lots more symptoms now that the higher dose steroids were masking. I get awful burning pains down my arms. My feet have been getting more and more painful. I now can’t easily put my right foot properly on the ground. It’s giving me a very strange gait when I walk. My guts are playing up and my skin is getting itchier. My reflux has returned with a vengeance. It’s like the muscle keeping stuff in my stomach doesn’t work and liquid part digested food and acid roll into my throat and mouth while I’m sleeping. It wakes me up sometimes with me absolutely choking and coughing my guts up. I have to sleep sitting up again.
Fortunately things are slowly getting back to normal in the hospital and they are catching up in other departments with all the procedures that have been on the back burner during the crisis of the pandemic. One of those departments is endoscopy. I’ve been waiting for a deferred procedure for over a year. A really friendly nurse called Krystal phoned me from endoscopy as I was getting ready to go to my appointment at Kings. When I told her this she asked if I would pop by endoscopy and pick up my preparation for the procedure. I mentioned to Krystal that it would be a really good idea if I was able to talk to the anaesthetist as the last time they pulled the plug just as I was about to be wheeled into theatre. They did this because I’m such a complex case. It was for my best interest but was not pleasant because I’d had bowel prep for the last two days and felt awful. As soon as my clinic appointment had finished I dashed around to endoscopy, getting there about 3.45pm. Krystal was so lovely and really helpful. She knew how long I’d been at the hospital and offered to get me a snack. These small gestures make such a difference and create a much more humane interaction.
I then saw two really nice anaesthetists. They were friendly, professional and very thorough. The most important thing is they listened. They heard me when I said that I had come round while still anaesthetised last time and it was awful to not be able to move or blink or communicate that I could hear them. They heard me when I said that I may be small but I take so much medication that normal levels of meds just don’t touch me anymore. They were very committed to making things as smooth as possible while keeping me safe to enable the various things I need done to be achieved all in one go.
Once they had finished with me in endoscopy, I went back to haematology to collect my medications. I got there just before 5pm. The medication wasn’t back from pharmacy. It’s annoying when you’ve been there all day and you just want to get home. They rang the pharmacy who told them it would be 25 minutes. They sent a young nurse to collect for me. She came back at nearly 6.30pm empty handed. Her shift had finished and she was already late going home. The nurse in charge of haematology rang pharmacy and they agreed to courier me the medication the next day. The next day comes and I hear nothing. I decided to ring pharmacy and check what was happening as it was now past lunchtime. When I finally got through, I was told that the medicines had been dispatched and collected by haematology the night before. I said I knew that wasn’t the case as I hadn’t left haematology until 7pm and they certainly were not. there then. Pharmacy was insistent that was the case and that haematology could courier them to me, so I had to ring haematology. When I rang them they of course said this wasn’t the case so I contacted my CNS who managed to sort it out for me. Within an hour pharmacy rang to say they were dispatching my medicines and it would be with me later that day. The meds were still with them. What a palaver!
I can easily forgive the IVIG mix up. It was a genuine mistake and it doesn’t usually happen and I know we have all learned from it. I am sad to say that I have not so much faith in pharmacy. They often make mistakes and repeat those mistakes over and over again. It’s bloody frustrating and cause angst and a lot of hanging around. If my prescription had been dispensed in a timely fashion it would have saved the NHS the money of needing to get a dispatch rider out to my address. I love the NHS and I’m extremely grateful for the number of times it’s saved my life. For the professional and empathetic way my ongoing care is delivered. For the incredibly talented staff who are creative in looking at my complex issues. However I do think bits of it need to be improved. I’m always up for helping with that. I don’t think you can educate if you alienate. I always try to give constructive criticism. Let’s hope that pharmacy learns from all this and makes some improvements.
As for me I am gritting my teeth against the pain I’m in just now. I’ve got my surgery on 6 July. This will be to remove the PEGJ, to remove a polyps, to implant a micro chip to measure how much acid my stomach is producing and to have a good look top and bottom to see how things are.
At least I’ve got the football to keep me company. I’ve been watching every match of #euro2020. One of the weird things about me is I love football. I used to play for Millwall Lionesses and Charlton. Whenever I go to visit a country, I always buy a football shirt representing the national team. Then when the Euros or World Cup is on I can wear a different shirt depending on whose playing. The photos contain a selection of some. I love having a playful and inclusive spirit. It’s also great to have a distraction while everything is hurting so much. Let’s hope it all settles soon. Meanwhile I hope you are as well as you can be and that you have some fun and light and love to keep you going through the challenges.
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