A reflective practitioner

The last few months have been hard. As a reflective practitioner, I’ve been thinking about how long I’ve felt below par. I realised how I’ve never really picked up since my 5 week admission over the summer.

Since returning from Ireland, after I got out of the ward, I have virtually had weekly appointments. Sometimes I’ve been at the hospital 4&5 times in a week. I seem to have an inability to maintain my electrolytes. Also my HB (haemaglobin) keeps dropping to the point where I need a blood transfusion.  This cycle has continued since August and I’m tired now.

This last week was typical of how things have been. Monday I had a review in haematology. My HB counts had come up to 96 so I didn’t need a transfusion and the electrolytes were only a little low.  I got to the hospital at midday and was home by 4.30pm. Tuesday I managed to go Christmas shopping. I felt cold and breathless and a bit faint. At least I got the things I needed to. Weds I had ECP at the cancer centre. I felt really yuck during the treatment and ended up falling asleep. I got to London Bridge at 1.45pm and was home for 5pm. The next day was a rare treat and I caught up with my lovely friends Alison and Cara. I was very slow and cold and breathless but shrugged it off. That night at 6.30pm I had a call from ECP to say my HB was only 85 and they couldn’t give the next days treatment unless I had an urgent blood transfusion.

I emailed Kings and explained what was needed and that I was coming to Kings for a midday appointment for an echo cardio gramme. They rang in the morning and asked me to get in earlier. I arrived at 10.30am. They took blood around 11.30am. I went off and had my scan and came back to Haematology. They told me my HB was now 83. I went and waited outside till they had some blood for me. They called me back in around 3pm. It takes 2 hours for a transfusion of blood. I was meant to be at Guys for 4.30pm for day 2 of ECP. I rang and they said as I’d be so late would I come the next morning instead. So Sat morning when I’m meant to be doing Christmas things I go back to the cancer centre to complete this weeks treatment cycle. I got home around 6pm on Friday and Saturday I was at the hospital from 10am till 2.30pm.

I list the hours in this post just so you can see how many hours I spend sitting around waiting rooms and how I have to constantly juggle competing demands and numerous appointments. Next week is Christmas week. I have an appointment Christmas Eve in the lipids clinic to see why my liver is causing cholesterol issues. I’m then back on 27 with pain clinic in the morning and late effects clinic in the afternoon. It’s just relentless.

It helps keep me sane that I have such a good family around me. I’m also glad that occasionally I break out and do something completely different.

As this years draws to a close I’d like to say a huge thank you to all my friends who have been there for me. The ones who know when to send a text or message, the ones who call in with cake and biscuits. The ones that invite me out to do fun things or get up to mischief. I need more of this in my life next year to balance all the rest of it. I hope this post encourages you to keep being the great people that you are.

To all those travelling the MDS journey with me, hang on in there as best you can. Let’s hope for new treatments and one day a cure. We are a rare band and it’s great the way we stick together and support each other. Know that I am thinking of you and holding you in the light and love of Christmas.

To my family, I am so blessed to have such a diverse family which is growing all the time. I love you all from the bottom of my heart and appreciate all you do to keep me as happy and healthy as can be. In that respect I am really blessed.

To myself. Keep going Kes some of the best days of your life haven’t happened y