It took me a while to write this blog post.
That's because, to be honest, I didn't really know what to write and how to explain to you exactly how I feel.
I thought I'd be telling you all about how much I've been celebrating and the endless bottles of Verve Cliquot I've consumed but it's just not been like that.
I haven't really felt like celebrating. Frankly I've just felt a bit..well...low.
For a lot of breast cancer patients the end of radiotherapy signifies the end of treatment. But, unfortunately, I make up that 20% of breast cancer patients that are HER2+ so my treatment will continue. I'll continue to have Herceptin injections until November. I'll then continue with my endocrine treatment.
I think I mentioned previously that I would be having tamoxifen tablets every day for five years. Well that's now changed. I'll now be having Examestane tablets every day as well as a Zoladex injection every four weeks. This will continue for 5 years. There's been new research that shows that this new hormone treatment is 6% more effective than tamoxifen. 6% doesn't sound like a lot but believe me in my world its a lot. The Zoladex injections suppress my ovaries and the Examestane tablets gets rid of the rest of the estrogen floating around my body. Since the estrogen is what makes my cancer grow and, ultimately, keeps trying to fucking kill me. The little bastard.
I've been having the Examestane tablets for about a month. I had the first Zoladex injection a couple of weeks ago. The injection is really painful. You would think I would be used to injections by now wouldn't you? My Herceptin injection takes at least 5 minutes to administer and normally starts off feeling like a bee sting until i pull a face and the nurse slows it right down. But no Zoladex injections really bloody hurt. Here's a picture of the injection:
I don't think the picture does it much justice. Two nurses administer it. Apparently one nurse isn't good enough. I have to lie down, which is a bit awkward lying down on your own settee in your own house in front of two strangers. I couldn't help thinking 'What if they rob me?' But I'm guessing thats fairly unlikely to happen in sunny Silsden.
'My colleague will do the injection and I'll support you by your head'.
Support me by my head?? Why? What's going to happen to my head?
'It's a bad injection this. That's why you need to lie down'.
Oh great thanks. As if I wasn't anxious enough about it already.
They where right though it really hurt. Mum couldn't even watch. I didn't have any numbing cream though.
I'm hard now.
So that's one down 59 to go. 1790 tablets to go too. But hey who's counting!
There's a massive list of side effects for both Examestane and Zoladex injections. Mainly hot flushes and other menopausal symptoms as well as depression (that could explain this rather depressing post) and bone problems. I'll now be having regular bone scans because of my increased risk of osteoporosis. I won't bore you with this too much now. After all I've got 5 years to winge at you about endocrine treatment.
I recently read an article in the Huffington Post about someone wanting to chuck herself in a lake and drown after her breast cancer treatment was over.
Seems extreme doesn't it? The article really struck a cord with me. No I haven't been so depressed that I've thought about killing myself. Wouldn't that be such a waste of all that NHS money they have spent on keeping me alive? How ironic. But I haven't felt as happy as I thought I would be after finishing such a big chunk of my treatment.
Apparently these feelings are really common amoung breast cancer 'survivors'. There are plenty of people who suffer with depression after breast cancer treatment. We just don't really talk about it. All this treatment has been tough, not just for us, but for our friends and family. We can't now burden them with something so 'trivial' as our ailing mental health.
There's been several articles recently published stating that over two thirds of breast cancer survivors suffer from post traumatic stress disorder similar to that of a soldier who has gone to war. I feel like I've been to war. There's only certain life experiences where you are faced with your own mortality.
Why am I still here?
Why do I get to come back from the war?
When so many others have faced the same war and have been killed.
There was recently a girl I read about from my support group. She had a similar cancer to me. She had all the treatment she could - chemo, radiotherapy etc. She had some pains in January. She thought it may be a viral infection. But it was the cancer. It had come back. She died a month later. Leaving behind two young children.
I know I'm being ungrateful. I'm not dead and I should be happy I've survived...thus far. I should be attending all the 'pink fun runs' and wearing my breast cancer ribbon with pride. I should be this strong 'thriving survivor' like everyone wants...and yeah sometimes I am.
But sometimes I don't want to do that because sometimes I just don't feel like a strong 'thriving survivor'. I don't feel grateful. I don't feel lucky.
Actually, when I come to think of it, I feel pretty unlucky.
Yesterday I was having a really good day. Then I looked on Facebook and learnt from a member of my support group that 'my' cancer means i have a higher risk of getting brain mets. I joked to them about having to go and see my oncologist for every ache and pain now that rads has finished. The ladies agreed. They understand what it's like. The fear is always there. Every headache I have going forward is going to scare me. Is it too much Pinot the night before? Or has the cancer come back and is it now in my brain?
How do you deal with that?
I'm struggling at the minute with the fact that if my cancer does return it will have been there all along. One rogue cell going nuts waiting to kill me. Just waiting to re appear in my brain, my bones, my liver, my lungs where ever it decides to re appear. Like some sort of ticking time bomb in my body.
I had a long chat with my breast cancer nurse on the phone the other day she explained how everyone feels like this. We all think we are going to 'paint the town red' after radiotherapy but we don't.
She explained that after two years my chance of reaccorrance decreases. Five years is kind of the magic number though. However, they can't guarantee anything. There's nothing to say after five years that the cancer won't come back. They don't use the word 'remission' anymore at least not for breast cancer. I'll never be in remission. They can never be sure. The best I'll ever be is NED (no evidence of disease).
If the cancer comes back it's secondary cancer. The cancers metastasised and my prognosis changes to stage four. Terminal cancer.
Yes the injections and tablets I take are a pain to keep having and it's annoying I still have to continue with loads of treatment when I just want to move on and get back to my life before breast cancer. But as my breast cancer nurse says to me - 'with each each injection I have and each tablet I take I'm protecting myself'.
I'm giving myself the best chance.
So I've put celebrating on the back burner for now. Maybe I'll celebrate when I get to the five year mark. That's when Ill hopefully feel like I'm a bit more 'out of the words' so to speak.
5th August 2020. GET READY.
I wish this post wasn't so depressing but there isn't many jokes you can crack about the fear of getting secondary breast cancer. (I'll try and think of some before I post again)
On a brighter note I've got loads of fun stuff to look forward to at the moment.
We are off to London in a couple of weeks - courtesy of The Willow Foundation and then we are heading off on a big family holiday to Menorca at the end of April - courtesy of Mum and Dad.
I need some sun, sea and sand.
It's been a very rough few months x
I love your honesty and your courage, thinking about you and hoping you get stronger everyday. You're an inspiration xxx
ReplyDeleteAww thank you very much! That means a lot! xxx
ReplyDeleteYou won't remember me but we crossed paths once upon a time through an old friend. Came across your page by chance and so sad to see what you have been going through! You seem such a lovely person and I can see how your strong spirit is getting you through this. Wishing you all the luck in the world xxx
ReplyDeleteWhat a lovely message. Thank you so much xxx
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