So my day today was another barrel of laughs - not. The joys of living with cancer and it’s consequences.
I had a light breakfast of a cuppa, some juice a load of tablets and a few biscuits. I arrived at Guys at 11am to have my linogramme. This involves having radioactive dye injected to see why my Hickman Line was not working properly. It meant going to theatre for the 4th time in 5 weeks.
There was a long delay as the person that went in before me had a complication. At 2.45pm I asked if I could eat something. I was told no in case I needed sedation. I explained I never have sedation and I’m taking steroids and need to eat. Sadly patients aren’t treated as individuals and even though on the previous 3 occasions I hadn’t had sedation, the protocol says it’s a possibility, so I was not allowed any food or drink. This of course left me feeling really sick and pretty unwell and somewhat irritated.
I was taken to theatre just before 5pm. The staff were lovely. The Drs were thorough and caring but could not understand why the line wasn’t working properly. They were reluctant to put in too much dye as my GFR is now down to 42 so the radioactivity is definitely not good for my ailing kidneys.
The line was flushing well but they could not get blood out of either lumen. They pulled and pushed and twisted but the line would not behave. They told me it was sat perfectly in the right atrium and they could not understand why it wouldn’t work.
The consultant went away and consulted the ECP team and some other colleagues. In the end they decided to put another line in. This one can take large volumes and is usually put in for dialysis when patients are sedated in ITU.
Once more I was “attacked” by a swarm of bees in the form of the local anaesthetic. The dr was really apologetic. Then two Drs worked on releasing the old line and getting this much thicker one in place. Again they kept apologising as they knew it would be painful because of going along the same hole that had already been burrowed across my chest. They had hoped to be able to go in on the right side but that is still blocked from the trauma of the first line, which was the one that split after only a week.
They managed to get this new line in and I was in theatre for over 1.45 mins this time. If this procedure runs smoothly it can be done in 30mins. Last time it took 2hrs. So at least it wasn’t quite as long as before. It’s such a weird feeling as these wires and tubes pass over your chest. Your heart starts beating erratically and the monitors start beeping and your breathing goes funny but it’s only short lived.
I was finally allowed to eat something at 6.45pm. The lovely nurses even got me some extra chocolate. I got home by 8pm and was able to have my evening meal and another load of medication.
A very long day for me and my poor long suffering partner. Medics have no idea of the huge impact all these hospital visits have. They only see what they have done and not all the other appointments. Don’t forget I was also in the previous thurs and fri.
Tomorrow I start again. In the morning I have to drink some medicine and then not have any breakfast for 3hrs. After that I have to pee in a container for 5 hours. This is to check how my gut is working and if it’s absorbing the nutrients it needs.
I then have to go to Kings and have another blood test and a consultation with the post transplant team to work out what we are going to do next with all my challenging symptoms.
I hate the huge impact all these hospital visits have on my life and the lives of those around me.
I am so grateful to the NHS and some of the wonderful staff who are keeping me alive. If I was American I know I’d be left to the scrap heap. It infuriates me that we are in many ways going down a more US style of medicine with the sneaky privatisation of our precious health service. Please fight to save it wherever you can as the thought is too scary of what will happen once it’s gone.
The photos show my 3rd line, the stickers they forgot to take off and my wild post chemo curly hair. Lol.
Let’s hope tomorrow runs more smoothly and I’m not at the hospital for so long.
I’m very glad that I have some nice things to look forward to. If you want to add to the pleasant treats in my life get in touch. It’s important that there is a pain/pleasure balance in life and sadly mine has been a bit out of kilter lately. While I was laying under the theatre drapes I was thinking of all the lovely things they do with children and I was praying for Evie and Daisy to take my mind off what they were doing to me. It seems to me adults too need a little fun and mischief to keep their spirits up. Maybe I’ll start a mischief revolution. Want to join me?
No comments:
Post a Comment