So, I had my last chemo a week ago. I'm struggling now to even write about the last session as I still gag thinking about it. So I'll just thank God that's over.
It was 5 months of what felt like living out of a bag, going to stay with friends initially, but then to mom's to recover from said chemo. So when I got home last week from mom's I unpacked my bag knowing I wouldn't have to be going off anywhere again until I choose to. And do you know I have no desire to be even going on a little holiday ..... yet.
My cancer journey isn't over though yet and won't ever be. Although chemo has shrunk what was left after the surgery, it also spread it's wings and journeyed to the bone in my spine where it is apparently awaiting oestrogen to make it active. I got told this in December and it blew my mind that I was no longer in the curable category, but now in the manageable category. It felt like a death sentence because we discussed timescales of how long people can live with cancer and manage it. But all I could hear was it's still in there.
Just over a month on I had a conversation with another Consultant. I asked why we couldn't do radiotherapy on the bone cancer and she replied because we don't need to, it's dormant. I was quite stunned at this as I understood when I was first told in December it had spread that meant it was running rampant around my body. Also no.
So off to the Consultant I went yesterday to see how I am going to live with the cancer. Apparently people are doing it all over the globe. They even go to work still with it. For me at the moment there's not a cat in hell's chance of me working. And that's a relief.
The plan now to keep the oestrogen away from the cancer is:
Letrozole tablet daily
Palbpciclib tablet daily
(Denosumab) injection once a month - this is for the bones - fabulous side effects include getting painful joint !
1 blood test per month
1 scan every 3 months
I have to say I don't relish the thought of all this, however it's better than planning my funeral.
Constipation
One of the joyous side effects of chemo has been a change to bowel function. Having been a regular on the toilet for many many years and not having any difficulty emptying one's bowel, it's been a bit of a shocker. I started getting pains on the one side of my head and I've been taking paracetamol for about a month or so. I even ended up having a head scan just to be sure cancer hadn't taken residency up there. Alas no, it appears that 5 months of chemo have caused me to have a backlog that I thought Dynarod might be called out to. After 3 days of laxative and 2 suppositories, movement has been slow. The reason I share this is because I had no idea how poorly a constipated person can be. I'd been feeling sick as well and put it down to the chemo so was popping anti sickness tablets which it turns out can also contribute to the bowel changing so I was making it worse !!!
Anyway, be warned. Eat your fibre and drink shit loads to keep regular. Constipation is not something you enjoy. Apparently it will take about 4 to 6 weeks to get back to normal.
So i sit here typing this update, and it may well be the last one as I don't know if I want to continue with it. As you know I've also used my creativity, be that photography, drawing painting textiles, writing to deal with life's opportunities for growth. But this has been different. Initially, yes it was a focus for me but I just don't feel the same about continuing to journal about it. Maybe it's just been too raw and still is. I've lived it and although I create to inform and impart knowledge about subjects not always talked about openly, I feel the need to retreat now and just start living with the cancer. Getting a new routine, moving to nearer my family, getting my long talked about dog and who knows what else.
This last 8th months and the gift of cancer has actually led me to rethink what do I want, how do I want to spend my days and surprisingly some of the things I thought I wanted I actually don't.
I do know that none of us knows what's going to happen in the next moments, days hours weeks. We may think we do because we've planned it and we're determined and focused and I'm going to live forever .... But the reality is at any given moment our lives can change like mine did in June last year. I said then nothing had changed, but everything had changed. And it continues to change. I'm much more living in the day than I've ever been. I'm more willing to sit through/discomfort, pain, fear rather than escape it. My default setting will always be avoid pain where possible. But we grow through pain, and in avoiding it, growth is stunted and we remain in that place of safety, fear and fantasy. Today I'm in reality.
I'll end this post just by saying how amazing my interactions with so many people at Queens Hospital Burton has been from diagnosis through to yesterday's consultation. From the out of hours chemo team reassuring me, to Macmillan who are amazingly supportive in all sorts of ways from equine therapy sessions to just being at the end of the phone, also my local pharmacy, the car parking peeps at the hospital, and of course my friends and family who have gone through this with me and who I have cried with, snapped at (or as my mom put it "you're a bit sensitive at the moment") !!!!! and spent more time with.
