Wanna hear a story?
About Jackie McGrory?
Shall I begin it?
That's all that's in it.
'Oh Dad!' Alice and Sylvia would groan.
I have no idea why the anguish. It's a good joke, isn't it?
We arrive home from our Tamworth excursion. Tracey makes tea. Armidale's water is not bad if it's been filtered, quickly boiled and good quality tea added. While she does that, I briefly peruse mail, blog comments and Twitter.
Then we do what we've done every time we bring home brian scans. (You won't believe me but that was a genuine typo, but suit yourself. Maybe Brian actually crept in there and made me dyslexify that. He's a laugh a minute, ain't he?)
What I'm referring to is that Tracey takes the scans to the bedroom and pours over them one by one. I read FaceBook or something. Both of us prefer it this way. I'd only complicate things by being there, and when she's done, she can act as the buffer if things look disastrous.
She comes out and we sit at the table. We don't have the specialist's written report, remember.
|See here for magnified image|
'In one way it can be interpreted as encouraging, because the tumour hasn't grown all that much.' She picks out the most relevant of the scans.
It used to be eerie looking inside my skull, with its living tissue, but I'm used to it now. I hope you never have to see what's inside yours.
We had both expected the visible tumour area to be bigger. The black necrotic area like an off-centre egg-yolk that people often think is the tumour is still there as expected. The more strongly whitish tumour area seems to have increased in size in some images, as does the greyer inflammation, as far as I can see.
More importantly perhaps, the character of the tumour is clearly changing. We have no way of knowing what that's about. Here's where the report would be handy.
We have no choice but to wait. This is all we know, or to be more precise, all we don't know.
I go to sleep soon after, comforted by what we don't know, but knowing at least that there's not some discrete mass in there the size of a baby's fist, nor visible evidence of tentacles snaking their way outward. Not yet, anyway. Ignorance may not always be bliss, but it has its own reassurance.
Until there's no choice, I will not go too gently into Dylan Thomas's good night.
[comment on report]
You keep pumping in that Avastin mate until YOU decide. Sod letting something as simple as a brian tumour make all the decisions.ReplyDelete
Thanks, Stephen. Whatever decisions are in our hands, we'll make them. Whatever ones are not, such as protein counts and consequences, we'll work with to the best of our ability.Delete
What can I say...I am so very very sorry. I don't know you except through Twitter, but I think of you often and admire your courage. That's all...ReplyDelete
Thank you. There are people I draw strength from, who make the difference between life [or life worth living] and death for me. As zmkc says, one of them is very obvious and bears a brunt, present and in terms of the future. Others help the best they can – and would do even more if there were ways they could.Delete
I second Stephen - and send my warm regards to Tracey, the silent strength behind the typing chair.ReplyDelete
A-woman to that. Sometimes she needs some propping up too, as there's no time off for good behaviour. Would that there were.Delete
Thank you for your posts about getting your MRI and looking at the scans. We have just done the same with my husband who has a malignant brain tumour (We are still on 3 monthly scans). You write about your journey so beautifully. We are quite young (my husband is 36 & I am 38) and it is great to read from the perspective of someone a little older and a little wiser about life.ReplyDelete
Tracey sounds like a magnificent woman. I know how hard it is being the carer - sometimes you want to give help and the patient doesn't want it and at other times you need 5 minutes to yourself and can't get it. But I wouldn't have it any other way. (Well I would and not have a husband with a brain tumour but we can't change that so not much point focussing on it.)
I look forward to continue reading your posts.
Thanks for your kind words. It always saddens me immensely that people are developing malignant [and other] brain tumours at a younger and younger age. My thoughts are with you both. I would be interested to know what treatment your husband is having.Delete
The carer's job for a person with such a serious illness is far harder than those who've never been one for someone they love can imagine. They have to hold it together so their partner doesn't fall apart. For the patient to see the carer cry is so distressing that the carer usually does their crying alone.
AH... I could say so much more; but carers are angels. Don't ever think they aren't appreciated by the patient, even when they're irritable and/or irrational. Knowing what their illness is doing to their partner's life causes terrible grief. Knowing especially that there's no happy reward at the end of it is the burden they both share.
We're on the road together. Don't forget that you have friends and family no doubt who are longing to help but not sure how they can. Tell them if there's something that makes things easier. They'll appreciate the opportunity. People generally are incredibly kind and generous even when they don't [and can't be expected to] understand the deeper problems.
PS I meant to add that at least, youth is advantageous in containing tumours. The stats show that the younger the patient, the more effective the treatment, and your husband is still at the peak of his ability to fight his.Delete
Thank you, Denis, for your words which enfold and validate those of us who are doing the caring thing. It is so easy to "disappear" into the role, and the emotions and the exhaustion of being a carer. The biggest danger is that we disappear to ourselves. It is usually only other carers who can pinpoint and articulate the difficulties - and the joy. Thanks (again.)Delete
Dear Denis, still with you. Lots of love and more and more love to you and Tracey. From former student Liz with dark curly hair.ReplyDelete