Broken crayons still colour

It’s been a weird few months. To recap, I’d been having a rough spell with lots of stomach pains after eating. Then I picked up an obscure virus called RSV. I started taking loads of extra antivirals and they made me feel sick so I wasn’t eating so much. That made the pain lessen, so swings and roundabouts. I then picked up another virus and had to be admitted to hospital for 5 days. This time I was put in 2 lots of strong antibiotics. Once I was well enough to come home these were swapped to oral antibiotics. Sadly these made me very nauseous and in the end I was throwing up every night.

After the antibiotics finished, my appetite stayed low and I lost weight. I ended up battling to get my medication into me. It was horrible. My lovely medical team increased my steroids. I was pleased that I’d managed to stop one of the steroids but sadly this was short lived.

The steroids increased my appetite and made me feel better, although they also make me feel shaky and weak. I also started to get the tummy pains again as my appetite increased. It’s like you can’t win.

I’m laying in bed with a hot pack on my stomach and wondering what’s worse, not eating or pain after you eat?

It’s hard being left with all these chronic health problems. I had hoped for a cure for my cancer and that I’d regain the life that had slowly been eroded from me over the last 17 years. I’m now 18 months post transplant and life is still a daily struggle.

One thing I do know is I wouldn’t be here without the gift of life from my sister. Her stem cells maybe fighting with mine but at least they are keeping me alive. I also know that not everyone makes it this far, so for that I am grateful.

What I have to work out is what I can still do these days that give me life. I need fun and laughter and mischief to get up to as well as hospital appointments, duvet days and medication. For me it’s also important I feel useful and that I can still make a difference and contribute to society. I recently took my aunts funeral and I have a friends funeral to take next week too. I continue to do my audio blog with BBC Radio Kent. Next month I am singing with my old choir at St George’s Chapel Windsor. That will be an amazing experience. That’s why I love the attached quote that broken crayons still colour. You don’t have to be perfect to make your mark on the world, you just have to be determined and to have a never give up attitude.

I hope wherever you are and whatever you are up to you are able to do something that brings life to you and to those around you.

Sometimes all you can do is grit your teeth

Sometimes I just don’t know what to say in this blog. I try to remain upbeat most of the time because that is me. Some times this is hard though and today is one of those days.

Ever since I was admitted to hospital I have been struggling with my eating and drinking again. It seems to get a little easier and then goes really haywire again. Taking my tablets is now a daily battle. It’s currently 4.30pm and I have just finished taking my morning medication. What made it so much worse was one of my tablets didn’t go down when I swallowed and started to break up in my mouth. It tasted awful and this in turn made me start to heave.  It’s such a horrible feeling and the thought that I have to take a load more before I go to bed fills me with dread. I have tried milk, milk shakes, Coke, various juices and water. Currently nothing helps me swallow the blasted tablets.

I’m also not enjoying or fancying any food. Again every meal time is a battle. I so wish I had a magic wand sometimes. I want to be well but not eating and drinking and being unable to take all my medication is not going to help.

I feel very weak most of the time and so tired. It’s the kind of exhaustion that no matter how much sleep you’ve had you still feel shattered. If you can imagine having 9-10 hours sleep and waking up tired. Then having a nap and waking up tired again. Then sitting and watching TV in the evening and nodding off again. This goes on day in day out.

I’ve been getting fidgety because I haven’t been out. The snow has not helped but as today was warmer and the snow has cleared, I decided to get my mobility scooter out and go for a “walk” The thermometer said it was 9. It certainly didn’t feel like that. I had wanted to go to the shop but gave up half way and came home to the warm. I feel like I’m going backwards at the moment. I have no strength in my legs. It’s like my get up and go has got up and gone.

I really want to start getting up to mischief but I don’t have the energy. I really want to embrace the unfolding spring. I’d love to go on holiday somewhere warm. I also wish I could take my tablets easily and eat more normally.

I suppose all I can do for now is grin and bear it and hope that things improve soon.

Your thoughts, prayers and positivity are welcomed at this challenging time not only for me but for those closest to me too.

Thanks for sticking with me.