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 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
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
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.
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!
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.
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.
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 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
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
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.
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
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.
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