I’m well and truly back from my holiday. It was bliss to have nearly 3 weeks without any needles or medics apart from the occasional phone call checking up on me. As you can see from the pictures, the view from my window was spectacular.
I came back to a stack of post 7 of which were letters from the hospital. There were also 3 messages on the answerphone, 2 of which were from the hospital. Do you think they missed me? Lol.
I crawled into bed at 3am Fri morning after the long journey from Holyhead. I then had to be at Guys for 3pm for Physio and 4.30pm for ECP. I was back at Guys again today for 12.30pm.
On top of all this activity my NJ tube has blocked. Sigh. So after ECP today I popped into the urgent care centre at Guys but sadly they couldn’t help. So I drove home and have been at my local A&E ever since.
I met a lovely young dr and explained all that I had tried to unblock the tube and said I was aware there was a drug that could be put down the tube to unblock it. He was good and listened to me and went off to the gastro ward to find the medication needed. It’s called Clod buster. Lol. It smells disgusting. It was funny watching him read the instructions and follow the step by step guide. Anyway he tried to squeeze the medicine in. Then it had to be left for an hour and then flushed. Sadly it didn’t work. He has now put in a second lot and again I have to wait for another hour. That takes me round to 9.15pm. He mentioned they might admit me if they can’t unblock it. I said no need as I can drink it’s just nutrition that’s a problem. Fingers crossed everyone that this dose works.
It’s amazing to think that I haven’t even unpacked fully yet and I’ve already had 3 hospital appointments and a lengthy spell in A&E. Oh the joys of living with cancer and it’s complications! Good job I’m an easy going person.
When I had my ECP yesterday the 2 nurses on were really great and worked together and managed to get 2 cannulas in with only a little bit of fiddling. Today sadly took 5 attempts and an hour before we had 2 working cannulas. I think the staff will be very pleased for me to have my new Hickman Line back in situ.
Tomorrow I’m gonna chill and do something nice because Monday I have a haematology review in the morning and go to theatre in the afternoon for my new line.
When so much time and energy is taken up with hospital appointments it can be really easy to lose yourself and just become a patient. I don’t ever want to just be a patient. I am also a partner, a mother, a grandmother, a sister, an auntie, a cousin, a niece, a friend and neighbour. I have to look after my emotional and spiritual well-being as well as my physical body. I need fun and laughter in my life and I need to know what’s going on in my family and friends lives. I never want it to be just about me. I might be frail at times but I can still listen and be alongside people.
This month is blood cancer awareness month. I dedicate this blog to all of us who struggle to live with various blood cancers but don’t want that to totally define us. Also to all of us who strive to achieve quality of life despite the obstacles that keep getting thrown in our paths. Keep going people and do something unexpected and fun. Xx
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