I’ve now been in hospital for 2 weeks. During this time I have had 2 CT scans, and 2 MRI’s. In the morning I’m having an ultrasound and I’ve also had 2 chest xrays. I am so lucky for living where we do and having this centre of xcellence to treat me as well as a free NHS. Sometimes when I read some of the comments on the American site, I wince at the comments asking what insurance will pay for and where you can go without insurance. One post was so sad, the man was spending his life savings on treatments when it was meant for his recent retirement. Everything he had worked for was going to go. How sad is that? My heart goes out to them all.
I know there is a huge financial burden just from living with the illness. New glasses every year mostly, clothes for your changing shape or to keep you warm in the winter or covered from the sun during the day. Heating is on more often too. I’ve had to buy 3 storage units for my feeds, medical equipment and medication. My car is bigger to accommodate my scooter so that attracts a large down payment. The Motability scheme pay the rest and they are great. It’s just that down payment that’s a struggle. I can adjust though and I have enough. I am not poor by the worlds standards and I count my blessing for that. I’m also not rich these days either.
Getting back to all those tests. When I had my abdo MRI I had to put a beaker full of sticky stuff down my PEG followed by a big jug of water. Half way through the water I knew I was going to be sick. I was in the cubicles outside the mri rooms and totally alone. I could see a bin opposite me but thought that a gross idea. I eventually managed to find a sick bowl having scanned the room. The staff came out and found me puking. They were very good and very attentive from that point of view. The results showed some inflammation and other bits and pieces so they say it needs further investigating as they don’t know what it is just now. Story of my life.
I went back the next day to MRI and this time there was no contrasts or medicines of water jugs. What wasn’t so good was going in head first. When I leave my room I have to wear a mask. I already had a temperature. They then put earplugs in then ear defenders over them. Your head is held fairly securely in a brace and then they put a bracket over your chest and shoulders. I do not suffer from claustrophobia. Even I found it hard going. Once in the machine, your nose is inches from the ceiling! I was in the machine about 40 mins. I started to sweat and had liquid pouring down my back. Not a pleasant experience but hopefully it won’t need repeating as this one came back normal for a change. Lol.
I didn’t make it home as planned before because I spiked a temperature again. I was on regular paracetamol and I still had a 39 plus temp. Luckily they changed the antibiotics and my temps been good since yesterday afternoon.
I’ve had some nice visits from my sisters and Dawn Marsh got some balloons to keep Kim Polito ’s company. It was also lovely to see Shirley Grout who came with some lovely cake sent by Sarah Grout . Thank you Sarah for that and the beautiful card. I loved them both. Then I was lucky to catch up with Alice Dunstall . Thanks for the most interesting up date and also for making a shoulder rub possible. It was good to catch up with Russell and Gill Grant. It’s incredible how many people we have in common. Gill please tell Russ that Janine who he knows through running club works in the same building as Gail and they have a little chat every day. Danielle Peach cheered me up with her tales of motherhood. Today I have seen my cousin Beverley Potter and my little sis Gail Thompson’s . We went for a “walk” in the park and sat and watched children and young people in a trapeze school learning their stuff. It looked like such good fun. I’d have loved to have had a go. Tina Probets came all the way from deepest Kent too with biscuits. I’ve been lucky to have such variety. I know some of you don’t like being tagged so I haven’t named.
The PEG nurse came today too. She said I’ve got over granulation tissue growing rapidly in my stoma. It’s very vascular so will bleed easily. She put a pressure dressing on to stop it coming out more. As it was, I thought it was similar to that seen in aliens where the creature bursts out of the poor blokes stomach. I joked about it with anyone who looked at it. It’s good to keep a sense of humour. Lol.
Yesterday I didn’t even get dressed and only just got out of bed. Normally every day I shower, dress, make my bed and change my quote. I did none of that yesterday. Today had been better but I feel a bit sick and my appetite is poor. Let’s hope I can sneak out again this weekend as that always makes you feel better.
As usual I wish you well with whatever you are carrying and I hope you find some love, light and laughter this weekend.
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