my birthday month

August feels like a month to reflect and gather myself. I'm not sure I can this time. Waiting on results

Waiting on the way I'll feel in September

Waiting on the need to feel like we made the right choice.

I'm filling up my time.

Being back feels hard when I remember we're here now. 

It's done.

I'm here.

to be reunited

 I am being reunited with people who have kept me strong through hard times, I am enjoying the connection and closeness. I am also 'excited' to be reunited with my MRI machine tomorrow. I will get to lie in her cosy space and listen to her melody of bangs and clicks and I will then, in September know where we are. I will maybe get a sense of what the year ahead will really be about 

I've been toying with some ideas around taking a year out, of spending it not doing very much at all. And I would simply put in the gap on my CV 'cancer recovery' would it put some off, no doubt but others  - maybe would bump me up their pile. Maybe. This is just a small yet recurring idea. I still can't let go of the idea of going back to work, not least because we are not wealthy enough for me not to earn, my husband won't be getting a very well paid job any time soon. I can't imagine him suddenly needing or wanting to earn more. Would those who saw the gap think that I'm fully cured, all done, a once in a life time awful experience? Because I think a lot of people see cancer as a one off thing, one that can come back but often I've had cancer. Maybe not these days, maybe people know it isn't so simple. And that's partly because there are more people surviving the first one, maybe the second one too.

And here I am just assuming that I'm only worrying about my kidneys - and I am. But of course I know another little bit of me could be slowly fucking up, could have a new brain, spine, pancreas, spleen, liver and maybe even an ectopic one somewhere. Could. 

I've been conscious too of the age of my body, hearing a pal support another woman, 50, who has just had surgery, the recovery is just harder the older you are. You don't bounce back in quite the same way, 6 weeks is not the whole story. 

Letter on the table

 When we got back, less than 5 hours ago there were flowers and 2 letters in my familiar yet unfamiliar kitchen. 

One was for my daughter and one was for me, And even though I'd asked my mum to send it I was still a little taken aback when I realised it was my scan letters. 

I'm tired and grumpy and it's muggy. Thank god I could have a cup of tea. 

End of an era

 This evening I set a fire and opened a bottle of wine that my yr 12 class bought me as part of a leaving gift. I danced in the front room and looked around at all I'm leaving and I felt a soft contentment. 

Who knows what the next chapter will hold, I only know it will have ups and downs. 

The comfort of going home and the people I will see and love is making these last few days so much easier. I have my worries, I have my mild anxiety but they are not overpowering. 

Soon we go, go home and we'll find out about that when we get there. 

today is bitter sweet

Here it isn't father's day. But it is in the UK. 

And I know I would have loved to see him. Talk to him, probably get frustrated by something. He would probably have run over by feet or spilt something. I would have taken time to adjust to understanding his speech. But I would have been able to ask him questions. That's what I miss the most I think. 

Just asking him stuff. 

fellow VHLer on Instagram

 I feel and affinity with a complete stranger, and have been happy to see her comment on my posts. She looks to be my age, think she has kidney issues too. She has a face not dissimilar to mine and hair of a equally enhanced shade of blonde. But more of course she speaks in a way I can connect to. Someone who gets it. Someone I hope I can support and share this all with. 

Don't even know her name 

I'm a worrier and a warrior

I have been on a hen do, with some lovely women, each of us have been through trials and tribulations. None of us are coming out of this unscathed. As we get older the more events happen that shape us and more define moments too. 

We talked a lot, us women, about the way marriage is a task. It's often hard work. I feel a little for the hen, but she took our wisdom in good grace, saw that each of us married ones have been through the ups and downs and she knows. She is not daft. There is not fairy-tale ending. 

My husband has helped me with what I know is a life long affliction of being a worrier. As I woke next to a woman I have never spent an evening with let alone a bed with we talked about how we slept. Badly, of course, different bed and too much alcohol. I told her about my habit of worrying and it's mostly a voice that hits me hardest in the small hours of the morning. 

As I explained this, the ways I deal with it, the self doubt, the nastiness my voice can be and how I have tamed her, I was able to see three things and slightly articulated them. 

1. I've always done it as long as I can remember, my parents would try to help me, a worry book by my bed to write them in, the letters I would leave on their pillows so I could get it out of my head. 

2. It makes sense to be a worrier when you know from before you even know it that your dad has a disease that gives him brain tumours (I was less aware of the others) and that you and your brother probably have that too. Having annual check ups, clinic appointments and then the scans, annual results. They did a good job of underplaying it, of making a family joke of the massive bottles of piss we collected for 24 hours once a year in our bathroom. The Dr that once checked if I had pubic hair by simply pulling my knickers down a bit while I lay on a bed. The change to a big hospital, Addenbrookes when a specialist was found. The eye scans of old, the yellow glow of skin and piss. The journey back through East Anglia, back to the coast with the words ringing in your head, angioma, pheochromocytoma, hemangioblastoma. Surgery, monitor, growth, tumour, cyst, partial nephrectomy  and never really knowing the difference between them all until you then do. 

3. My husband has helped me worry less, talking it through, refocusing, allowing me to fear the worst and then concentrate on the likely and the hopeful. 

and as I reflect on that now I see a 4th.

4. I am a warrior 

telling my story

 I had a fascinating chat with a colleague, we discussed all things kidney. 

I will be pleased when I get back into the scan flow - I am pushing my luck. 

But I'm glad I have, it was the right thing to do

VHL awareness month

And the month that my dad died in. 

I'm missing knowing he's alive and I'm feeling so deeply sad. 

Right now my life is very unsettled and I feel all sorts of vulnerable. 

So much so I'm annoyed by things I can usually rise above. 

I'm annoyed by things that I really just shouldn't be. 

I'm annoyed I don't get to see him - the healthy well him. 

And I'm so sad. 

I'm lost at sea. 

VHL - is it rare?

 My pal's brother has had to have emergency surgery - hemangioblastoma in his cerebellum. They have suggested he gets tested for VHL.

Small genetic world. 

His father is unknown - he is probably the carrier- too long a go to have been my brother. My pal's half brother. 

My brother was always told he couldn't be reckless. 

He never was, we think. 

Imagine if he was, a niece or nephew. 

triggered

This morning as I waited for my husband to get ready so we could go to breakfast he was listening to a podcast and a female surgeon was talking about the sexual harassment she and many others have experienced. What she described and talked about brought back my fear and memories of the times I've felt afraid and abused at the hands of medical professionals. 

Some minor moments of not being listened to, the lack of knocking on the door, the assumption that they can do things to my body without explanation and care. 

And the harder ones, the time I knew I was being sexually touched by a male nurse doing an ECG. I didn't know how to report it. The time I was treated like a slab of meat and my pubic hair shaved in a hurry without care to get the job done. Being hurt and told it didn't hurt  The moment I wondered why I had bruises in strange places after surgery. After my c-section having a man shove his hands inside me, remarking that I shouldn't be able to move my legs that much as I squeezed them shut, he hadn't warned me. 'A sweep' he said as if it was the routine I should have expected it. 

Perhaps I have more of these than most being a frequent flyer - I'm mostly very happy. 

The women said she hadn't experienced much in recent years, sighting that she had changed. I too became hardened to the system and found ways to protect myself. To ask for what I want and hold the gaze of the medical staff who thought they knew better. Until they could justify why they did. Asking why the door wasn't knocked, pointing out my rights. Requesting my family are informed and having someone with me. 

But still I cried as I explained my memories to my husband and felt it all again. My vulnerability each time I go. My need to meet the surgeon and know that he's (all but one have been men) a good guy. 

And the light is being shined on this - good. 

#metoo

I miss him

I'm really missing my dad. This week I've dreamt of him often. I've woken up crying and I've sensed that he's not here. 

He's the only one who really could know how I feel some days. No one else, not even those with the same disease.

I could always ask him.

I could always tell him

And he's gone. 

I'm feeling empty and today a little bit afraid. 

The death if Ros. 

Another one gone. 

I'm wondering who will be next. 

You weren't my aunty but you were

 I didn't even know she existed until my brother stayed with her and my mum's cousin Tim. But I didn't register that, a couple of names of relative who lived in London. 

Then as a 21 year old I was suddenly in need of a place to stay and not just for a night but for months and she and Tim said yes without any reservation. And how she looked after me, how we talked, Ros was such a generous person, with her care and love and often her clothes too, she was forever trying to give me items she had decided she wouldn't wear again. 

She cooked the most fabulous and flavourful lamb shank I have ever eaten and her roast dinners were divine. I ate so much while living with them, I ended up the heaviest and plumpest I have ever been in my life and I include my time being pregnant in that calculation. I couldn't resist that early evening G&T and the expensive and quality wine while we ate. 

If you haven't trained to be a teacher you won't fully appreciate how hard that first term is and She and Tim looked after me and made it a much easier experience. We stayed in touch over the 20 plus years that followed, they coming to us and being there not long after my little girl was born. We caught up whenever we could, at least once a year until COVID stopped so much of that and I so hoped that in July we would take the trip out to St Albans to see her and make each other laugh, I can hear it now, that slightly dirty chuckle of hers and how she would almost wink at me when my husband said something she thought was dirtier that it was! 

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.