Wednesday 23 March 2016

It's My Party...& I'll Cry If I Want To

Last Thursday I had my last radiotherapy session. 15 sessions and 5 booster know because of my high reacurrence risk blah blah blah.

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


Wednesday 9 March 2016

Radio Ga Ga

I've been cut up and poisoned so it's now time for the next stage of my be burned - AKA blasted by a very expensive radiotherapy machine.

Ok so they aren't exactly going to come at me with a blow touch but the side effects of radiotherapy do involve you getting quite the burn. Think severe sunburn but without the holiday abroad.

So apart from a skin reaction the other side effects of radiotherapy include: 

Swelling - I quite like this one. Since my lumpectomy that boobs been a bit smaller so I'm hoping a bit of swelling might even things out. Silver linings and all

Fatigue - I've been ridiculously tired since August so this is nothing new for me

Rib tenderness - ahhh the joys

Lung scarring - my doctor said this shouldn't effect my breathing (nice use of the word 'shouldn't' there) but they need to make me aware in case I had future surgery and they where to question the scar on my lung. I'm slightly worried that they think a future surgeon wouldn't know I had radiotherapy before performing any surgery on me but hey ho this is the NHS after all.

Cardiac toxicity - radiotherapy may cause heart damage although due to modern techniques the risk of this is much lower. Phew! My Herceptin treatment can also cause heart problems, which is why I have regular MUGA scans. My poor heart. Thank god it's already black. Ha I'm just kidding! 

Secondary malignancy - this is a goodie isn't it?! My cancer treatment can actually cause future cancers. Brilliant. Love a bit of irony. Oh and before the 'pro cannabis meme makers' of the Internet get on their high horses - the benefits of radiotherapy outweigh the risks. 

Pain - this is a nice general one isn't it. Good to know.

Skin changes - it's common to notice a slight change in your skin colour for some months after treatment. I'm going to be a modern day MJ.

Lymphoedema - I'm already at risk of this as I had a couple of lymph nodes removed during my surgery. As I'm not having radiotherapy to my armpit they don't think I should be at any further risk

Scar tissue - surgery and radiotherapy can cause scar tissue to form. No biggie. 

So lots of side effects and evidently some are much worse than others. 

I'm having a total of 20 sessions of radiotherapy. They usually give breast cancer patients 15 sessions but as I'm at a high risk of reaccorrance they are giving me an extra 5 booster sessions. So that's 20 sessions everyday Monday-Friday for four weeks. 

I had my initial consultation a couple of weeks after chemo. I asked Dr T if I could start radiotherapy after my birthday. Normally they start radiotherapy about two weeks after the first planning meeting so that was no problem as it was in line with her plans anyway. 

So I got to enjoy my birthday and do fun things like this:

...and eat lots of things like this:

My planning meeting included signing my consent forms and getting lined up for radiotherapy. 

Getting lined up is quite complex as they have to be very precise so they cause as little damage as possible to my heart and lungs. I had to lie on a very uncomfortable ct machine, which was a bit like a giant washing machine rotating around me. They added some wires to my bad boob and drew lots of stuff on me. It felt like they where drawing small marks on me but they could have been having a whale of a time drawing little penises all over me for all I knew! I didn't look down as I was concentrating on doing as I was told and lying very still. 

After I had the ct scan one of the nurses gave me my three tattoos. Yes I have to have permanent tattoos!! Can you even? I thought this was quite cool but it turns out they are just tiny little dots in a navy blue coloured ink. A bit like those old style sailor tattoos. Not very attractive. 

Can you remember that episode of Friends when Rachel got a heart shaped tattoo? Phoebe was meant to get one too but she ended up being too scared and just had a blue dot. She said it was what she looks like to her mum in heaven. It was a tattoo of the whole world. 

So that's what I think my tattoos our of. Three WHOLE WORLDS!! 

The tattoo in the middle of my chest was meant to be the most painful so I had that one done first. It actually didn't feel too bad. It just stung a bit like an injection - and I'm getting used to those now. 

The photo below shows one of my tattoos after it had been done. (Ignore the criss cross. That's just pen. The actual tattoo is just the tiny dot in the middle)

I had my first radiotherapy session about two weeks after I had my planning meeting. 

The appointment itself only takes a couple of minutes (shame it's an hour travelling there and back). It's all organised with military precision. From the waiting room you go in to the changing room that has a door on the other side. You get changed in to a hospital gown and put your personal items in a plastic basket.

Then you go through the door, which leads to the radiotherapy room armed with your basket of personal items.

The room itself is quite large, which I thought made it a lot scarier. The radiotherapy machine itself is really big and looks something like this:

I'll try and get a picture of my actual machine before my treatment ends. You have to lay down on a rather uncomfortable bed with all sorts of stirrups for your head and arms as well as a leg rest for your legs. I then have to hold on to a bar above my head with my left arm and whack my boob out ready to be zapped. I'm obviously quite accustomed to whacking my boob out in front of several strangers now so it doesn't bother me.

After an ID check the radiographers do some drawing on my boobs and line me up. They then put an alarm on and leave the room whilst the zapping commences. I imagine they head off to some sort of control room like in Inside Out.

I'm possibly wrong though.

I don't look down but I know there is some green lasers on my boob and I can here a loud buzzing sound throughout the session - but it literally only takes a couple of minutes. 

Sometimes they put a bit of music on to try and drown out the buzzing noise. It's usually Whitney Houston on a Friday. I suppose it can't be anything to funky in case you start moving. I don't think radiographers really need bopping feet and jiggling hips while they are trying to zap people with radium.

After the session is over I grab my basket of personal items and head to the other changing room labelled 'way out'. Get changed and then I go through the adjoining door back in to the waiting room. All very quick and painless.

I've now had all my 'normal' sessions of radiotherapy and started on my boosters. Boosters are pretty much the same but they add a large metal frame between the machine and my boob. It looks like a toture device but it looks a lot worse than it is. 

My burns are meant to peak about 14 days after my treatment is over with but so far it doesn't look too bad. 

I've been slapping on the Aqueous cream they gave me like there is no tomorrow so hopefully that's helping. 

So, compared to chemo, I don't think radiotherapy is going too badly at all. I get a 'cancer perk' of free parking and at the minute it looks like my sunburn is starting to go brown so a bit of free tanning on the NHS...

...albeit it is just on the one side of my body. 

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