gifts make memories

 I'm not very good at buying gifts. I try but I over think some, under think others, am often crippled by the need for it to be useful, good, mean something. I suspect I'm not alone in this. 

I've been noticing gift giving, surprise gifts and the joy it gives those who give. A few months ago I gave my friend a pen, an ordinary pen but the moment and the reason meant a lot to her. And I've smiled at the intention to give a bottle of wine, not from me or to me, but somehow it was for me. 

This week I put on a necklace that my friend bought me before I left for a new life, it makes me think of her every time I see it, hold it. I folded the pyjamas that a group of wonderful friends (name of our WhatsApp group) bought me when I got out of hospital after my second and more troublesome brain tumour. The earrings that work colleagues gave me to say goodbye, the soap I wash my hands with and everyday I see a flag that was bought for my daughter which meant the world to her. These and many more gifts surround me and remind me of the love that surrounds me. 

a full bin

 There are moments when you realise that the mundane is such a joyous blessing. Because I tested positive for COVID but my husband and daughter did not I'm in a mini bubble in my own home and from my own family. 

My husband is sleeping in the camper van (a Bongo Friendly - for those of you who know about these things) We are lucky enough to have two bathrooms, one for them and one for me. We aren't touching, I'm not kissing her goodnight I'm not lying on her bed and I'm not getting any cuddles. Yesterday we held hands through a blanket, a risk we were willing to take. 

This morning my husband walked determinedly from the bathroom he now uses with a full bin in his hand, the lid not quite able to shut. She grumbled about this and explained bin etiquette to our daughter. Until now someone else has emptied the bin before it overflows. We exchanged a look. We carried on watching a TV show while he emptied the bin. 

Being a family is about this and I am so very lucky to have it all. I'm so lucky COVID seems to be a harmless virus to me. I'm so lucky. 

A seasoned self isolator

 having spent many a week or two or more in hospital I'm very used to my life suddenly reducing to the size of a small room, ward, hospital. 

I know the joy of stepping out and away. I've done it 8 times, not all VHL related but all important. There are the ones that hold real significance, the first one was following the same operation my brother had, he never walked again, he left in a box. That meant so much, driving back along the familiar roads from Cambridge to Norfolk, knowing my fate was different and not really knowing how I would use such responsibility. 

The next was a trip to an MRI scanner, as we approached the lift, my body too weak to make the short journey by foot, I was suddenly overtaken by an overwhelming sense of survival, renewed hope and joy and I cried. 

The last time, there were two moments, the first was breathing in the cold fresh air of central London, having been in an airconditioned and temperature controlled environment for over a month. The darkness was so welcome, a lack of the electric light, the sounds of traffic and people not there to care for you.  And then walking through my front door and into the arms of my daughter, the hug of my life, the sheer relief gushed from me, I shuddered with it, unable to contain the waves of release, of another day I've survived, I wonder if that's what returning from war feels like.  

Considering all that my two weeks in my home self isolating because I'm infectious to others and fine in myself seems like a non-memory. I'm home, I'm working and I have a beautiful garden. One week to go and the first place I'll go to will be the test centre - just in case. Then I suspect my next stop will be the office! 

Being one of the stats

 I tested positive for covid, I join the millions, billions of people who have. I feel a little fraudulent though, a slight tickle in my throat and that's it. I feel guilty, spreading it as I will most likely have done. I have only been near my family since I thought there was a risk. 

I'm also feeling relieved. Because so far I am totally fine, I was worried, what with all the VHL, the missing adrenal glands, the other stuff. The need for hydrocortisone, the memory of my dad well over 25 years ago when he caught flu. He was so ill and that was when he was healthy. My Drs have trained me well in 'sick day rules' a phrase you probably only know if you are someone who takes medication to stay alive. I have doubled up, even though I feel well. It won't do me any harm and will help cushion anything that might be lurking ready to mess me up. I have an up-to-date injection. 

What has been simply lovely is how many people have sent me supportive messages and made me feel so completely loved and cared for. I think those that know my disease well had the same fears and worries that I had. I know I am surrounded near and far by love and positive energy, and I believe that makes such a difference. I'm one lucky woman. 

The honeymoon of post scan results

 I make the same health promise to myself quite often, I've done it for a large part of my adult life and at times I actually commit and carry it out. 

Around September I made one of these resolutions for my fitness and began by using a rather helpful app and have built up to 5 workouts a week, now at about 40mins each. This really is the most I've done for about 14 years (the last time I got proper fit I then got pregnant)

And I'm drying out over January, one week and a bit down, even with a very hard first week back at work 

Why the preamble? 

Well, My legs are looking good, my knee hurts and I really should see a physiotherapist, but I'm not sleeping any better and my tummy is a big bloated ball of gas and I'm feeling a bit miffed that I don't yet look like my very healthy, and much young 28 year old self. I was expecting to feel and look 28. The good thing is, I know that what ever is going on with my reluctant bowels, it isn't a tumour. So that's a nice missing layer of anxiety. It won't last long, give me a couple of months and I'll be able to think, well one could have grown. 

2021, hi, how are you?

 Nearly the end of the holiday, it's felt long and mostly restful, I felt profound yesterday but didn't get round to recording my thoughts, but now I come to type I'm left with a simple wish, let 2021 be better than the one before, for everyone and can we please all learn from this. Please.