Passion fruit

 I can leave Malawi content as I have harvested some passion fruit. 

This little moment matters to me, not leaving something undone. 

I don't really know why but it does.

Leaving behind a legacy of fresh, passion for others to enjoy. 

I perhaps want that on my grave stone. 

Searching for what should make me happy

 I am increasingly relying on fate and not sensible planning. I have applied for a maternity cover - the Headteacher was very nice but I got the feeling I'm not what he's looking for. I might be wrong. I've seen another role I think I'd love, but then I feel that clawing doubt that I won't get it, been out of it too long. The news schools might be shut here for longer so frustrating and unnecessary for us and other schools too.  And with the devastation around me, the giving of stuff to those who now have nothing, and those who had almost nothing anyway it just doesn't feel important. 

And yet it is and it is my life and I want to be happy. 

With this sense I'm aware as well that I'm taking a gamble with my scan dates. I'm willing it all to be ok and waiting for July and not thinking about it, but of course that's a lie because I am thinking about it, often and I push it aside. My husband hugged me yesterday, he held me tight as he cried because he had seen a woman and a small child sat with almost nothing, a small cloth with what were probably all their belongings. He went to them and gave them the money he had in his pocket and some food he had bought for other people. As he held me I thought about my kidney! Imagine that, I thought about what is inside me and if it is growing and if it might kill me. The two things at the same time. Such is my privilege. 

Today he has gone off to help again. We have a 4x4 and he's using it to help. I'm here, offering people our shower - people who are used to hot showers when they want them. Not much is it. I'm not sure how I feel. But I know I want to be happy. 

adults think they know everything

When I was about 18 I went to a odd hotel in Great Yarmouth. It was too see if I deserved an arts sponsorship to get to arts school. 

I didn't get it. 

One of the panel + they were all grown up. They were adults. They didn't believe that I could have experience grief or pain. 

Fools. 

Those were some of my darkest days. Those were hard, my art was raw and amateur and real. 

Today I am less of the artist that I was then. 

home is where the heart is

 I am home, in the Warm Heart of Africa. It certainly felt odd. My heart is split and that might never change.

I understand why I'm feeling this way, I don't feel like I am in either home properly, it's a strange transition and one that I don't want to waste on feeling befuddled and feeling sad about. This morning, having grabbed a grapefruit from my tree and had it for breakfast, reminded me to love each moment I can and take it in. 

I've seen people who are leaving find fault and tell themselves it will be so much better somewhere else. It is different but not better. Some things are lovely to leave behind and some things are not. 

I was struck by the huge difference in my friendships  between the two places are very different. It was lovely to see everyone here but really only one person has a piece of my heart. But in the UK I have a bundle of people with whom my heart has grown. 

My heart is my little family - my little girl who is so tall. And so I'm here with her, my heart. 

The magic cure isn't as magic as I thought

 The last few days I've seen posts from people who have not had the miracle cure from the drug that they and the rest of us were expecting. Tumours re-growing once the medication stopped, having to still have the kidney removed despite the months of side effects. 

It's making me feel a bit sad and I begin to spiral into the unknown future. 

I need to focus on something else 

last chance - well it's not but it feels like it

When the fates allow it I will look back and use these last few weeks as a lesson in keeping on. I feel so utterly supported by so many people in my life and I'm sure if it was based on that alone I would have smashed it by now. 

My husband doesn't take things personally which I admire and try to emulate. He has a good philosophy on this. I wasn't the only one disappointed - only one person was happy. 

So now to revision on the next thing... 

Maybe this is the one 

harder than I thought

 I've been very tearful today and finally had a good cry.  Simply put, although I know it's the right thing to do for so many reasons, I don't really want to be doing this. It isn't helping that I miss my family loads and that they are in the sun and I'm in a jumper. 

I was just, essentially, coached by my clever and logical husband and decided to put my energy into the job I want more. I have no idea if that's the right choice. If I could I would fly back now and just accept I don't have a job. I want so much to hold my baby girl and be held by my man. 

It's hard to maintain the joy of London when I want to be sharing it with them. 

Tonight I want to sleep well and prepare and feel as ready as I can. 

I want to be able to do my best. 

I want to be appreciated for all I can offer. 

I want to want the job. 

I wish I was better at finding out what I want. 

hydrocortison

 Humph

I need more than I brought with me and it's very annoying. In Malawi I can just go and buy it. I don't think this is necessary, in the grand scheme of  things, a good thing, but my goodness I wish I could go and get some that way now.

I've considered halving my dose so it will just about last. That, of course is not a good idea. 

Humph 

flying home

I keep having to remind myself this is real. It doesn't feel it. Like a crap prank. I don't know if I believe this is happening and try, it really is. 

Each moment a little bit closer to that big change. If I get the job I know I'll deserve it. I'm essentially applying for the same job I went for 9 years ago, when I knew nothing! 

I know so much more now. 

Genetic lesson in ethics

 There are moments in your life that hit harder than others and then, like any other kind of grief, it tends to fade or at least hits less often. 

This week I again talked to a A-level biology class about my life with VHL. The starter for this lesson is essentially a similar genetic profile to me and the students are looking at the ethics of genetics. I've talked about it before, but the teacher and I have this routine down now. We are a great team. I'm also surprised that 4 years on and several versions of this lesson and they are still always so surprised when I reveal I have VHL. I'm the person they advised that couple not to try for. the disease sounds so awful. And that the girl they know, my daughter was a surprise and 'happiest day of my life wasn't when she was born but when we found out she didn't have VHL' 

Classes obviously don't really talk about it out of the room. But I know from those students who I talked to later on it had a significant impact. One boy telling his mum (who then told me) he's going to go into genetic to find a cure. 

And thanks to a scan they also get to look inside my body. They have hard copies of my abdominal MRI. 

I am a teaching tool. 

Why moments hit hard is that of late I've been thinking about that nasty brain tumour, it hit hard. It was the worst and I stood in front of them realising I am past the main fear. I'm coping well and I am more optimistic. Yes today when I had a sharp pain in my head I suddenly let myself quietly freak out. I was doing a poo. My dad was diagnosed with one of his brain tumours because he reported pain when did did a poo. And just for a moment I drifted back to the room and the weeks of fear and utter hideous dizziness. 

whiskey

I'm watching a zombie apocalypse series. I don't like them. I don't like to think how easily so many people you know and probably love could turn and eat you. 

But what strikes me this evening is good well off the survivors seem to be. They have food and water, a roof over their heads. They seem to have a change of clothes. They also had a fair amount of whiskey. 

They had loss, naturally but here, where I am now this isn't fiction and they don't have this much. Cholera is killing people so much more than COVID ever did. Poverty kills even more than that every day 

It's hard to sympathize when the people in the film are in a better situation than the man I didn't buy a pineapple off today.

I'm not a good person 

prediction

 someone I know and respect has begun to read this blog. Exciting and a little unnerving. In response to his comment via email I  thought, well I should read those ones again as, understandably I can't remember what I wrote. And I kept reading, enjoying the memories and reflecting on them and then I see one about my dad and his wobbliness. 

At the time I had simply written that he probably had another 15 years in him. I was kinda spot on. 15 years. good guess hey. 

My little girl is 15 and a half. How many years do I predict for myself? Not my life expectancy. How many does she need? I know that we are making this move, partly to give her a step towards better independence. This week she asked if I would sleep in her bed with her. She didn't want to be alone. I obliged. I know what it means to be able to be there for her, emotionally and physically. 

we have a couple of secret messages we share, I of course won't say what they are but they are proof that we are who we are. No alien invasion. I have the same with my mum. we used it often. She would ask me them when I awoke from an operation. Imagine that, my mum checking I hadn't been replaced by a science experiment. 

I know that's not what that was. I have passed this onto my one. I'll be me always, we have our code. if there is an after life and I get shunted back to her I will be able to prove I'm me. A bit like 'ditto' in the film Ghost. It is ours. 

nope - not telling 

when you're sphished

This evening I'm shpishhed

It is fun

It is ok

It is fun

didn't bother

I went to bed early, I didn't bother with it. I am feeling low and worried about the year ahead. I haven't been able to book my MRI here and all I see when I look on the various types of media is the NHS crashing to the ground. 

I will probably have to book a trip to SA to get it done. I don't want to do that. 

I woke up several times in the night. The worries of the year ahead looming large. 

I have a list of what ifs I can't seem to shake. 

But I'm lucky enough to have rolled over to my husband and I told him and I cried. And he understood. I know that overall we'll be fine. We just will. White privilege and a healthy dose of affluent parents. But I'm just feeling so gloomy about 2023. 

We're leaving our safe haven and our escape from the harsh reality of all that the UK holds. 

I know I'm bored quite often, but I've had so many years of craving that, I'm not going to let it go easily. 

I also need to see a dentist. 

Urgh. 

Those comments from that man

I have been very troubled by JCs writing in The Sun. I immediately got the GoT reference. And that's because I found that scene one of the most disturbing moments of TV I had seen. There are others, usually a rape scene, done all too well. Those and that scene, her walking having just had her hair roughly cut and stripped naked, paraded in that way made my stomach turn. It still haunts me, when I recall it, accidently or because it is presented, I feel a visceral unease. It was deeply unpleasant and although fiction I felt it summed up so much about hatred thrown at women. How we must be punished for doing what men do. thinking of it makes me feel vulnerable and afraid. It felt all too real and very possible, because this happens to women, metaphorically and physically. 

For him to reference it and for that to be being used as an excuse has made me physically angry. I am appalled by it. Horrified it was allowed to be put into the public domain and all for money. It will have caused more men and sadly women to believe this level of hatred and violence is not only acceptable but normal. It will have validated many with whom misogyny is part of their every day, and may well have concreted the rationale for such a mindset for many more.

I am grateful to every person who has been as angry about it as me and has spoken out, including his daughter and I am in disbelief at anyone who can defend his words or the paper for allowing it to go to print. One prominent Headteacher and I think behaviour tzar has tried to minimise this. I have no respect for that view and cannot fathom why she waded in. I have seen girls come to school distress at their hair being cut as a punishment, I have talked to girls and women for whom being stripped has been used as a punishment, I have known the fear of just the threat of if can produce. How can anyone minimise the intent behind those words. 

how much to declare

 I'm applying for jobs. There is always the confidential section. Last time I was applying in the UK I ended up having to disclose to the HR department. I'm not sure if I do need to do that. 

What if I get a job and then, within quick succession I need an operation. Currently my situation is stable but I know that kidney one is near needing something doing. Could even be now, could even be before, could still be a few years. If I have stuff done over the summer break I could even be in out and done before anyone would even know. 

There I go, thinking through it all, over thinking, and then I wonder. How, when you don't know me, would you take it. 

Do I say - oh and just as a final thought, I have a disease which probably won't be an issue but I do, well sort of have cancer. 

not VHL a different disability

I recently explained to teacher

'if you're dyslexic, it's always about dyslexia.'

I don't know if he got it. 

I'm high functioning. The most obvious part to those I work with is my spelling. Some people don't get it.

Tying my laces 

Reading the time from a clock

Remembering a short conversation

Time

Timetable

All sorts... If you don't get it, you don't see it. 

If you don't get it you don't see how much we adapt and learn ways to thrive

being with fellow know how it is peeps

 I had pizza with a pal last night who just gets it. She and I both have a disease that means results day is always more of a  - can I live my next 6months roughly the same as I just have or maybe a bit better?

I am going to miss being there for her face to face and I'm going to miss her laugh. She laughs with her whole self. 

What's great is that we do still find ways to laugh and it means the world to me.

cat's out the bag

 the news that we are leaving hasn't gone down well. Which is nice. Some tears and some expressions of sadness. Not all mine 

Perfect day

 toady I got up and made myself a cup of tea, and then I finished a jigsaw, made a fried egg sandwich and then did a bit of tidying up. I sorted the water and  brushed my teeth. I looked at social media and posted about why  today mattered. I had a cuppa with a friend, I worked on some stuff and made myself a crumpet with marmite (a real treat) I helped my daughter with an application and I kissed my husband. I planted some seeds and planted out some seedlings. I washed up, twice, maybe three times if you count the little bit in between. I walked around and I smiled. I contacted friends and I watched something on Netflix. I made dinner for my family. I had a bath and scrubbed my skin and washed my hair. I'm typing this now, still smiling. 

A perfect day because I'm living it, unaided and full of gratitude to all the people who made sure I am here. It's my 7 year craniversary. I don't remember the date of my first brain tumour operation. I know that one was in January. I saved the date of this one. It really was a frightening time. I went into that operating theatre not knowing how I would come out, who I would be, even if I'd be alive. Not the first time, but this time, I wasn't sure if I wanted to be alive at the end if I was going to stay the woman who couldn't move for fear of the consequences, who would have given up completely if it had been possible just a few days before, a thinner version of the person who had been admitted 3 weeks before, a person who wasn't sure if she liked herself. 

And so today I'm allowing myself to be happy as I do most days now. I'm lucky.