Post 456: To hop on or hop off that’s the question - part 2.
The shoes I’m wearing to the oncology appointment are feeling fine today, it’s a good way to be but I have the willies about what will show up on the bone scans. I’m certainly nervous but perhaps that’s because my Darling is going to town for her tattoo of a coded message of “f**k cancer”. It’ll be a pretty line up of characters so only the wise ones that ask will know what it means (see photo at top of blog).
My Darling set off this tattoo journey with her need for some tribute of her favourite brother that would allow her to be closer to him after he died suddenly on holiday in Colorado. It was a surprise and a huge loss but now there’s a permanent monument ion her arm that warms her heart with each glance she has of it.
The other parlour she’ll be going to today is owned by the lady who’s inking my Darling this morning and as I drop her off half way to town I can tell she’s nervous but excited too. This fine-line tattoo will be different to Gary’s heavier outline technique so will look very different.
I wish her well leaving her with her stomach butterflies and as I drive awsy with my butterflies I realise this is no ordinary day.
Our youngest is in great form when I meet him at the clinic way up north (13 miles north, ha, ha) and we sit chatting about the question I have drawn from the reports of the two scans a year apart, that see straight through me and give me the visualisation I need to get the seriousness of this cancer into my head.
I hope I learn all I need to move on from this stale mate I’m in with the “pain vs treatment” game of chess we all play.
Before we are called in to see Dr Alicia I get a calm text from my Darling wishing me well and telling of her meeting the loveliest tattooist at this other parlour and she is loving her treatment as a customer for this first tattoo with her.
I’m glad it’s going well as we get called into the clinical room for the face to face.
Briefly, there is a quiet welcome and a professional air about things but in minutes we are talking relaxed and she’s up to speed with my need for a look at the screen she’s prepared for me, showing me that four in a line skeleton image with white bones and black cancerous blobs.
This is fantastic and the progression is only so, so. I’m happy to be shown the “new” and “widespread” cancer with the contrast take-up, it’s not that bad, is it?
I now am satiated with this view I really wanted but now we head down the list of dreary question-answers on my review of their report and by the end of them I’m in contact with what it means to have either treatment plan offered.
Docetaxel and Radium, is the way forward but continuous assessment and symptom reaction is the third and my favourite thing, which is what the plan is now.
Docetaxel will be hard on me and harder on my heart so not likely to be available due to Cardiology not advising it as a good idea with my weakened heart.
The Radium however is available more easily a will not need cardiology approval but not so powerful as the Docetaxel chemo treatment.
But either one will need scans before the start to act as a base-line and to be sure there is only metastasis in my bones and nowhere else. The funding for Radium insists on only treating the bones and nothing else.
That’s a wrap, as they say. I had all the info and I can make a decision later, after debriefing my Darling later, and as we depart from the room the special care nurse reminds us that if we want a photo, a quick-snap of the two bone-scans I came here to see, take a photo of the screen before you go. Which we did. Thank you Nurse Nina thank you for the opportunity. Now the debriefing with my Darling will be easier to explain.
Our son and I head back to my home-town to the café where we all three will meet up in for lunch/dinner.
Whilst we let my darling glow and wax lyrical about her wonderful fine-line tattoo we eventually turn the voices to the bone-scans I’ve shared with her and we talk over the two choices of treatment on the wait and see approach. We are calm and happy to explain everything so we all are up to speed and the games afoot.
After a relaxed afternoon with our youngest he heads home and I talk again about treatments with my Darling.
It obvious that Docetaxel is not on the table any more, no more chemo that might kill me like last time. But the Radium is the kiddy. That fits the bill says she in a serious and helpful manner.
The thing is that if you are going to try to get rid of the back pain it’s the Radium that could help more than the pills and portions of the Hospice; though that would obviously continue regardless of the treatment plan I choose.
So there we are.
I’ve been given a bit of homework; to investigate the Radium for anything we don’t already know from reading the paperwork about how the Radium works.
This is a real step back to my starting blocks a year and a half back then and as the busses line up I could Hop on or Hop off one or other of them.
In other news the self advocacy has finally come up trumps with a new prescription for the 0.5mg steroid pills at last. So now I’m in position to be able to gauge how all the pills work together.
It’s never easy to feel the difference when new pills are added to the already huge list I’m already taking. But we shall see what happens this coming week.
I think with the pain now in my upper back and neck I’m really not sure I should be driving as it’s uncomfortable to check my blind spots.
But I’m not yet the dawdling old fart unable to drive a car yet, and I’ll drink to that.
It’s been a good day and I’ve taken my poorly stiff neck to bed, but I’m being watched over like a hawk. My Darling is assessing me physically for the looming holiday in the north, daily, which is disconcerting but essential for her to judge if I’m fit to have a holiday.
And that’s just about it.
Take care, sleep well.
