I was right, Macbeth wasn't

 all is well in the state of my body. (mixing my Shakespeare references a little but you know...) 

As well as can be expected given the list. 

I am proud of my list. 

Currently:

EYE  - Optic eye tumour, full thickness macular hole

1.     LEFT KIDNEY cystic lesion 13 x 12 mm in the midpoles of the left kidney sepated

2.   RIGHT KIDNEY midpole cystic lesion 12 x 18 mm, Postcontrast enhancement of the right renal cyst is septated seen.

3.    LIVER - small hyperintense focus on T2-weighted imaging with associated enhancement post contrast in segment 8 of the liver measuring approximately 6 mm.

4.    PANCREAS - cystic lesion seen in the tail of the pancreas with no associated
enhancement postcontrast, the largest measuring approximately 6.8 mm. No definable masses in the pancreas.

5.    BRAIN - There is posterior angulation of the spinomedullary junction and an enhancing lesion measuring 3 mm at the posterior aspect of the spinomedullary junction in keeping with a haemangioblastoma.

6.       SPINE - multiple cervical small enhancing lesions in keeping with haemangioblastomas.  A similar lesion is also seen at the level of L1 vertebral body. The conus medullaris terminates at the level of L1. There are multiple haemangioblastomas in the cervical spine 

  

Ehancing haemangioblastomas is also seen at the posterior aspect of the spinal medullary junction.

Tomorrow, tomorrow and tomorrow

 When Macbeth said it, he was feeling rather gloomy. 

I'm rather optimistic. 

Let's see who was right 

18mm

We have a friend on campus, who, no matter why a reference to size is mentioned, will inevitably make a joke about the size of his willy, or possibly the size of a vagina. And despite myself it does always make me smile. 

Size matters. 

I'm waiting on the comparative scan information and so with the information yesterday I can only be cautiously happy, but from the previous letter and the report from the most recent scan (last week), 18mm is the same. 

There are a number of caveats to this. 18mm in one direction is good, but what if it's got fatter. Is it a cyst, simple or complex and where is the critter. And also this is in just the one kidney, there's another one with a smaller cyst. 

cyst

growth

tumour

cancer

all can be the same and all can be different. 

size matters

3cm is the generally accepted danger zone, rate of growth is important, but if what I'm tentatively allowing myself to believe is true, then no growth over 19months is an unbelievably good sign. I've had tumours not grow in me for decades. 

Decades in medical advancement means A LOT. 

I think, I hope and want to be sure before I let mu guard down, but I think then, this is the best possible news. It also tells me living a less stressful life and enjoying the sun are important. 

waiting with twitter

 At some point my twitter and my blog will converge and I wonder if I'll then do a kind of double entry... 

anyway this morning we are home, the flights back only slightly delayed and no issue over our covid test, which had been a mild niggling worry I had the two nights before departure, I've learnt over the years to voice these fears only when it will help me. This time, I didn't want to say it out loud, because only for the briefest of moments in the last 6 days have I been out of ear shot of my daughter. We protect them from our worry when we can. 

She sees through me so well now, the worry about the scans haven't been anywhere near as well hidden as I could manage in the past. I think she has a healthy mix of worry and stoic acceptance. Some from me and some from her dad. He never seems to worry like the rest of us do, when he does I use that as my barometer of potential doom. 

In the last week of term my daughter went to see the school counsellor, she just needed to talk and I sensed that, she needed a space to say what she worried about without any dismissal or layers of, yes buts... she needed to be able to share her fear without us hearing it. The school counsellor told me she was extremely impressed by her emotional maturity and that made me happy. 

It was prompted by a night out where she got very upset about something in her past, she was bullied in England and this has stayed so raw for her, but my instinct told me this was more about now than then. We talked about how she might be able to think about it without such a vivid trigger response and we both know that this is something more complicated than what appears on the surface. Within all this, in the same week we talked about a girl here, the sort who is lost, she doesn't know how to be an advocate for her friends and she doesn't know how to get attention without being unkind, she makes my daughter sad and angry. We talked about why she might be an arse hole. Her mum died a few years ago, her father seems disinterested and her older sister was a teenager when she assumed a peculiar role of mum/sister. Despite these valid reasons for being a bit of a mess, my child said, yes but mum if you died you wouldn't let me be an arsehole because of it. She's right of course. no excuse... but we've talked about that, I have had the luck to ensure I say what needs to be said, to understand my mortality and therefore ensure I've been clear on my beyond the grave expectations. 

And at these times, the wait the inevitable wait, I know why. My mortality holds me and whispers to me when I'm trying to sleep, it taps me on the shoulder when I'm making a cup of tea and it stares me in the eye as I hug her. It sings with me and laughs with me and it won't ever go away, we all have it of course just some of you may not have met her yet. Today I'm glad I have because I value my life and my health and my days here. I relish food and drink and good company and I see her way off in the distance now, she's walking away because it isn't time to dwell. 

Not today. 

a newbie again

I wasn't sure where to go, what I needed to take or how to fill the forms in. 

My husband came, my daughter came, that helped by hi t go. Only one person allowed with you. Oh covid.

It all felt new and yet familiar. All broadly the same but enough different to make me nervous.

My name was said in a funny way, luckily I realised it was me. 

I asked for help. 

I was allowed to keep most of my clothes on. Bonus. No gown. different.

I asked for a blanket. The same

It was soft and fluffy. Different

I had to hold my hands over my had for t go scan, that was different.

The technician asked about me and my disease, in a way that made me feel special and important. Different

The noise was the same. The banging and variety. 

The injection was the same.

The automated voice that told me when to breath in and out and relax, same job, but not a person. 

The length. The same

The resolution. The same.

The results... We wait. The same? Oh how I hope.

Just about coping

 Today I had a moment of repetition, like the time 7 or so years ago on the yellow staircase at my school, holding onto the banister and breathing, telling myself out loud, 'you can do this'. Then I held back tears, not because it's wrong to cry but I need to cry when I am not trying to cope. 

'You can do this.' 

I did then and I will now. I'm holing onto the stress and softly said to my husband today, I don't think I'll be able to relax until the scan results. 

'Of course' he confirmed and the simplicity of his reply helped, reminded me that I'm just about coping, but that's remarkable. 

The layers of stress are thick too, it's not just an annual scan, it's moving from our relative safety, it's the need of paper work, it's the COVID test first, the bloods, the new hospital and the complete unknown of how my team get to see the scans. My child, my friends, my family, all quietly worrying too. 

I'm not going to have a drink tonight. I'm going to sleep and maybe have a good cry.