Be the rainbow

About time I gave you all an update. I had some good news today in that the latest viral swabs have come back negative. This means I no longer have any active flu virus in me. That in turn means I don’t have to wear that horrible mask any more. I’m well pleased.

The other nice thing to happen today was my new glasses were ready for collection.   They certainly make life a little clearer. What do you think?

The glasses were possible because of the generosity of strangers, friends and family who donated to the crowd funding page called Be The Rainbow that Lyn Weston and Richard set up.

https://www.facebook.com/donate/269899513687961/?fundraiser_source=external_url

To honour what you have all done for me, as well as buy my glasses and order some sunglasses, I purchased these children’s shoes in the sale in John Lewis. That way I can always remember the two quotes I love about rainbows. “The soul would have no rainbow if the eyes had no tears” Also the one that Richard and Lyn took the page title from “Be a rainbow in someone else’s storm” I love the vibrancy of the shoes and the connection to the quotes as well as the reminder of the kindness and compassion of all of you. Thank you from the bottom of my heart.

As for how I’m doing. My poor skin is really struggling just now. It’s very itchy and dry and as you can see marks very easily. At least the top stitches are out from my Hickman Line.

I don’t have loads of energy and I still get breathless on exertion but I would say that things are improving. I’m having to be a good and patient patient.

I had 4 hospital appointments this week. Two were for ECP. I caught up with the lovely Nigel Roberts. It was nice to see him as always and share some London hospitality over a meal.

One of the other appointments was for audiology. It seems my left ear has slightly improved and this baffled the audiologist. He said i would need a referral to a consultant if my hearing kept fluctuating the way it was. That he has never seen that before and it’s highly unusual. I throw it out to you. Have any of you had hearing tests that have shown things getting worse and getting better without intervention apart from hearing aids.

The other hospital appointment was with the pain clinic. I spoke to the consultant about possible clinical trials but she said she wasn’t aware of any going on just now. She suggested I increased the synthetic cannabis to see if that improved the pain and nausea and stimulated my appetite. I’d rather not but it might be worth giving it a go.

Today I popped to the shops. It’s my granddaughters birthday this week and I wanted to pick up a couple of bits. This horrible man pulled into the disabled bay I was waiting to go into and didn’t display a blue badge and when my partner challenged him, he told us we could “jog on” Charming eh? I leave you with a poem I wrote to try and get across to able bodied people the importance of leaving disabled bays for those who need them. I’m not the best poet in the world but this is heartfelt and illustrative of the challenges of living a life differently abled.

Look at me by Kes Grant

Look at me and what do you see
A woman walking slowly with a cane
Have you ever stopped and thought
What gives her the pain

Look at me and what do you see
A middle aged woman with a glint in her eye
If it wasn’t for her sister
Then she would have died

Look at me and what do you see
Many layers and colours in different hues
All disguising and covering
Life saving tubes.

Look at me and what do you see
A heathy soul with a wink and a smile
Who has a plateful of tablets
But still walks less than a mile

Look at me and what do you see
Someone deserving of her blue badge and car?
Without life saving treatment
She would not get very far

Look at me and what do you see
Remember me when you are tempted
Don’t give in to that and leave the space free
Or else you leave me with lots lamented

Look at me and what do you see
I live with cancer and many other issues
Want to swap my life and blue badge
For your legs and a space with out any misuses

https://www.facebook.com/donate/269899513687961/?fundraiser_source=external_url