Wednesday, 28 June 2017

Rads Marathon

So my rads marathon is done. I'm not going to say "rads are finished, hooray" because there will more than likely be more rads zaps in my future. For now though, I'm glad this schlep is over. 21 days has been tough, I'm absolutely exhausted and need to take some time to rest and be kind to myself before the next chapter starts.

Thursday, 22 June 2017

No More Cake

5 years ago, it's oh so clear,
In the waiting room, the rising fear.
Walking into that stuffy room,
Increasing dread, impending doom.
I'm so sorry, the surgeon mumbled,
And my whole life began to crumble.

I made it though the treatment plan,
Got married to a wonderful man.
I'd been given a reprieve,
We'd picked our kids' names; Alfie, Niamh.

Every year upon this date,
I'd put a cake upon a plate,
Adding candles one by one,
Blowing them out, reflecting, another year done.
Another year of being me,
Another year of cancer-free.

In the blink of an eye, that all has changed,
My whole future rearranged.
Today there's no cake upon a plate,
There's no 5 years to celebrate.

My cancer is back, this time it's worse,
It's like I have some kind of curse.
Stage 4 (or mets) means there's no cure,
So a new plan I must endure.
Treat it for as long as they are able,
Keep it at bay, keep me stable.

The darkest thoughts inside my head,
I'd written myself off, I was already dead.
The oncologist dilutes my fears,
He says "you could have years and years".

There it is, the bubble of hope,
Something to cling on to, to help me cope.
So currently I'm being fried,
With radiotherapy to keep me alive.
They'll take my ovaries, an oophorectomy.
Will I feel less womanly, will I still be me?

Then move on to new hormone pills,
I'm hoping the side effects won't make me ill.
Constant monitoring, blood checking, scans,
Are all a part of my new plan.

As I find my new normal and readjust,
Forgive me, it'll take time to get it sussed.
"Eat Life" a wise friend once said,
I'll seize the now, for no-one knows what lies ahead.
I may have not made the magic five,
But I'm bloody thankful I'm alive.

Saturday, 17 June 2017

PET Scan

So today (one month on from receiving the dreadful news) I had to have a PET scan. That takes me to 8 appointments this week (5x rads, 2 x oncology appointments and this PET scan) at three different hospitals. I am absolutely exhausted, this is fatigue like I have never felt before. I cannot think straight or even string a sentence together. Typing this is probably a stupid idea. In fact, it definitely is. TBC after a sleep.....

It's amazing what a restorative sleep can do! Feel betterer enough to type and actually make sense!

So this morning I had to have a PET scan at Guildford so that there are baseline scans to compare things to if I get on the drugs trial. I had to fast for 6 hours before and drink a litre of water. We arrived at the imaging unit and I was taken in to the scanning area. There I was given a radioactive glucose injection in my arm and then had to lie down for an hour (no reading, no phone, no iPad) whilst the radioactive material worked its way round my body. After the hour I had to pee so I had an empty bladder and then was taken to the scanner. It was a bit like the CT scanner I'd seen before but more enclosed. I had to lie on a bed, arms above my head and not move. The scanner whirred around me and I moved through it. Half an hour later I was done. You don't feel anything whilst having it, just a bit claustrophobic. Then I had to pee again (they like you to get as much of the radioactivity out of you as possible) and I could leave. I'm not sure if I will actually get sight of any results from this or not, I suppose only if it brings any bad news of spread elsewhere. Whilst I am hoping beyond hope this is not the case, I am pretty convinced it's on the other side of my hip as this area is hurting very much at the moment. At least I know that if this is the case, I can have rads on it or the upcoming systemic treatment (whatever that may be) would get it. At least I'm in the system now.

Wednesday, 14 June 2017

Not Just Pissing in the Atlantic

A busy day today! First I had rads, halfway through the bastard blasting now - huzzah!

Then Mum drove me over to Guildford (collecting Rob en route from his office) for a meeting with my trial oncologist. After a delay of an hour (boo!) we had a bloody positive meeting! Basically it looks like I might be eligible for a new hormone therapy wonder drug called Ribociclib which my oncologist (probably late 50s/early 60s) said, "when taken with letrozole, is one of the biggest drug breakthroughs in treating secondary breast cancer that I have seen in my entire career"! He said that whereas previous advances in treatment of secondaries have been a bit like pissing in the Atlantic, on early trials of this drug, 100% of people saw some sort of improvement. The median being 30 months of PFS compared to letrozole alone which is more like a year. 

However, to have this hormone drug I have to be post-menopausal. Tamoxifen that I'm currently on is for pre-menopausal women and as my cancer grew back on it, it obviously isn't working for me any more. This therefore means I will have to have an oophorectomy, aka I will have to have my ovaries whipped out straight after rads. But, if I can't have children anyway now, then I guess why not. 

So, a lot to take in, but as long as I pass the eligibility criteria (which the onc said he saw no reason why I shouldn't) and complete the eligibility trial period of scans and blood tests, then I'll be on the trial. Please keep your fingers crossed for me!

Friday, 2 June 2017

Sleeping Lions

I've reached the end of my first week of radiotherapy. I started my chest and ribs rads on Wednesday. It has been pretty much the same process as with my hip, I go in to the room, lie on the "bed" of the machine and put my arms above my head. The radiographers then move me into the correct position and leave the room. I'm told to stay as still as possible, like a really shit game of sleeping lions, apart from in this version your prize is actually zapping the right area if you don't move, as opposed to winning a bag of sweeties.

Then the machine whirs and moves around me. With every beep and noise I hear I chant the mantra "kill, kill, kill, die, die, die" and I picture the cancer cells being obliterated. It might sound ridiculous, but that's what the rads is supposed to be doing, so why not! Then the team come back in, lower the bed, I get (hobble) off and I'm free to go. The whole process from entering the room to leaving to dress takes 10 minutes.

So far I'm feeling okayish. On Wednesday night my hip was really sore, I was lying on the sofa crying. I took ibuprofen and put a hot wheatbag on it and the pain subsided a little, but it did shake me up a fair bit. I know this is all real, but feeling actual physical pain made it more so. It feels a bit better today though, so hopefully it will just feel betterer going forward.