Safe Cycles

Dec 22, 2016

(This isn't a festive post).

In my last blog post, I spoke about having a two week break in Anastrozole, the daily hormone inhibitor tablet, to see if it made a difference to my tiredness.

It didn’t.

So, back to square one. I need to go back to have my thyroid levels checked, and then go to discuss the results with the GP. The last ones have been normal, so I don’t expect these ones to be much different.

So, still no answers.

I’m still constantly, bone crushingly, tired.

But it’s the type of tiredness that even if I go to bed at 9pm and wake up at 9am, I don’t feel refreshed or rested. I feel like I want to go back to sleep. Often, despite feeling so tired, it can be impossible to sleep. This is so frustrating, and when I resort to the prescription sleeping tablets, I feel like I’ve failed.

Most recently, I’ve been struggling mentally, with the perpetual cycles of scans and treatment. When I was having treatment for the Stage II cancer, I had 18 cycles of Herceptin. One infusion every 3 weeks with a break for surgery, starting on Thursday 21st November 2013, ending on Thursday 8th January 2015.

I’m up to cycle 16. At this point last time, I was counting down, ”2 to go”!

Now, there is no countdown. I have to get as many treatments under my belt as I can. Because this treatment is keeping the cancer under control, it needs to keep working for as many cycles as we can. The longer it works, the more the tumours are kept at bay and the longer I live…it’s as simple as that.

Treatment every 3 weeks. Blood tests, one or two days before each treatment. Scans every 3 months. Daily tablets. Hormone inhibitor implant every 4 weeks. Constant pain. Completely random sleep patterns. This is my normal now. And I hate it.

New Normal

Looking at me, you’ll see a normal person. No visible signs of anything untoward going on. But that’s a facade. It’s a mask. The person behind that mask is not the Julia who went into this maelstrom in October 2013. That person was confident, capable and carefree. The current one backs away from people and social situations, and gets anxious about the smallest thing.

Thankfully, I have access to the fantastic support and services from my local hospice, Garden House Hospice.

I regularly see a palliative consultant to discuss my overall physical and mental health. In one of my last appointments the subject of Depression was raised along with a potential treatment plan of anti-depressants. Having taken them in the past when I had Postnatal Depression after Felix, I know how they can help, but I want to try other things first.

The Hospice allows me to access reflexology and aromatherapy, which I find helps to relax me. I also see a Music Therapist. It’s a new service, but it’s fantastic. I’m surprised people aren’t banging the door down to book a session. I love these sessions, as I get to sing in a safe environment, and I love singing. It can make me cry if a song hits me with it’s lyrics. Queen’s “Who want’s To Live Forever” is a killer, but I still sing it! The hour I have is so precious.

Crucially, I also had access to a counsellor. I saw her earlier in the year when I was coming to terms with my Stage IV diagnosis. This time though, it’s coming to terms with the fact that this is how my life is now. Even when I’m well, I still have the same cycles of treatments and scans. And that’s rubbish.

So, if you see me when I’m out (which isn’t as often as I used to), and you ask me how I am, I’ll probably tell you I’m fine. I don’t think you are actually interested in what is really going on. This is less to do with you, and more to do with me. Don’t be insulted. Don’t think I need to “get it all out” or “open up”. I talk about things with my counsellor. I talk about things to Ross. I talk about different things to different people. Don’t be offended if I say “I’m ok” , it’s a safe answer and at the minute, more than anything, I need to feel safe.