I write this blog with the sun streaming through the windows and creating interesting patterns through the blinds. It’s always good to take a moment and just appreciate the beauty around us. Sometimes we don’t look up enough. Some of the buildings above shops are amazing but if we don’t lift our gaze we don’t notice.
People who follow my story will know I had a rough couple of months recently following an unusual reaction to an Aclasta Infusion. I lay on my couch and wasn’t even able to get in my own bed. Obviously having been so still for around 8 weeks, it’s taken me a while to get my strength back. Undaunted by this I’ve continued to move forward doing a bit more as the days go by.
I was at Kings yesterday for my long day. I had my IVIG and then was seen by the lovely Victoria. She noticed how much better I seemed just from how I walked to her room. She asked me how my guts were and when was the last time I threw up. I said it was good and I’d only been sick once in the last month. I was still having reflux a couple of times a week at night that wakes me up chocking and during the day I regurgitate if I bend over having eaten. Apart from that all is good. She was pleased, as was I. Having some energy to enjoy the nice weather Is just great.
Victoria and I spoke too soon. I woke up in the middle of the night and did one of my really large vomits with lots of undigested food. This carried on all night and into the mid morning. I also had a tummy ache and needed to go to the loo frequently. On top of this my temperature was 37.9. One more point up and I would’ve had to contact the team and be seen.
Today I feel a bit washed out and I still have a jippy tummy! My temperature is slowly coming down. It’s so frustrating at times to take one step forward and two steps backwards. It’s impossible
to be consistent with any commitments and I hate being unreliable. Sadly I’ve had to get used to it as there is nothing I can do about it except plod on. For example yesterday I was meant to get a haircut. Instead I had to send apologies. Imagine though that it was something more significant than a haircut, like one of the occasional funerals I take. It’s a very hard line to hold in tension.
One of the treatments that’s started recently for me is phototherapy. This is to help with my very itchy skin. I now go to Kings twice a week for this specialist intervention. The treatment involves being in a big light box, like a sunbed but you stand in it. The first day it was for a whole 10 secs. It takes me about an hour each way to get to Kings. So a 2 hour drive for seconds of treatment. Today I was up to a whole 29 secs. I will keep you posted if it’s effective. It just shows what a problem it is that I’m prepared to do it.
I had an unpleasant and for me, an unusual experience recently. Someone who was an acquaintance and Facebook friend took exception to me posting about meeting Dame Kelly Holmes recently. She was upset at my acceptance of the honour system that harps back to the Empire. Politically I would agree with her. This is even more the case with the latest debacle of the people Johnson nominated. That said, I would never judge an individual. I have friends who have received honours and people who have declined or sent back. All points of view should be treated with respect. I was also accused of crying out for special treatment in supermarkets and with Irish Ferries and yet I could be with Kelly and others at the reopening of the ward I have been a patient on many times. This is despite the fact that I’m wearing a mask in all photos. When I go for a blood test or x-ray or attend another outpatient department I have to be alongside people that are not wearing masks. I don’t shout because that are making it unsafe for me. I accept that the world has moved on from the pandemic and left behind a lot of forgotten shielders. We have to navigate out way through gatherings now knowing that we can be at risk. I have to continue to be cautious but I also have to live.
I think it’s great that Kelly uses the experience of her mum’s blood cancer and death to come along and highlight the issues for us. If she was a selfish honour grabbing person she wouldn’t be doing this.
I have never blocked someone from all my social media platforms but sadly had to on this occasion. The person concerned couldn’t see that her spitefulness and judgment of me was uncalled for. I asked her why she thought she had the right to attack me and that as a Christian where was her theology of not judging others? To that I was told I was being patronising.
It’s really sad that some people feel they have the right to attack others. It’s also a sad indictment of our society that it’s not ok to disagree with people without getting nasty and personal. My partner who had done nothing at all was also denigrated by this angry woman. I know it’s because she’s been hurt and the pain that’s trapped inside her bubbles to the surface sometimes. I tried to point out an alternative perspective but it was all falling on deaf ears and making the person more angry so I had to give up. All I can do is wish her well and hold her in the light.
It reminds me of the story about the monk and the scorpion. A monk found a scorpion that had fallen into a rock pool and couldn’t get out. If it stayed there it would drown. The old monk tried to get the scorpion out but it kept stinging him. The young monk with him said “why are you doing that.? The scorpion will just carry on stinging you.” The wise monk said “it’s in the scorpions nature to sting. It’s in my nature to love. Why should I give up my nature of love and compassion just because I get stung?
It’s so true. We mustn’t let these horrible things that come along uninvited to steer us away from our true self and stop us from doing the right thing. It’s also worth noting that there is such a thing as tough love and sometimes people need their bad behaviour calling out but in a kind way.
My encouragement to you all is to keep sending love and light into the world. At this point in our shared humanity we need it more than ever.
