Cancer Blog - Episode 24 : Talking About the C Word

How you doing? It’s been a while, sorry, I’ve been doing stuff and haven't felt the urge to write. You know how it is, Some days you do, some days you don’t. Today is cold and rainy, so a pot of tea and a quick blog is very much the thing.


Team Gynae Score

I met my gynae oncologist last week and she was everything I needed her to be; honest, direct, informed, prepared, responsive and utterly, reassuringly, professional. Finally, Team Gynae have redeemed themselves. Also, Sue the grumpy nurse wasn’t there, which made everything instantly better.


Hospital appointments are so frequent and normalised now that I no longer have to psych myself up, just to get to the hospital. But at the same time, I, and every other cancer patient I’ve met, carry a permanent sense of dread at all times, that bad news is coming, that some new, awful thing will be discovered, or something sinister is spotted on a scan result which shows a new or metastasized tumour. It’s something you slowly learn to live with, but you also have to accept that after any cancer diagnosis, your life has changed, irrevocably, and the carefree assumption that you’ll live way into retirement, and achieve all of your life plan, may have to be re-written.


The C Word

Once you accept that you have cancer, the word ‘cancer’ itself becomes less frightening. I use it a lot, say it out loud, I speak honestly about it, don’t shy away from it. I stare it in the eye. Mainly, because I like to know what I’m up against, but also because I have nothing to hide and nothing to fear from talking about cancer, or telling people I have it. I know that many people choose to keep their cancer diagnosis private, and there are many valid reasons to do so. But I made a decision very early on that I would share my story, and if I attract any negative attention, prejudice or judgements by doing so, then let’s unpack those as we go along. After all, it isn’t Voldemort, is it? He who must not be named. Yet “The C word” is still used in common parlance about cancer. We still find it awkward to even say the word. But you know what? Voldemort was just a fucked up kid who took the wrong path. Cancer is just a bunch of fucked up mutated cells. Both need to get the hell out of here, frankly.


I’m not interested in taboos or shame or guilt or keeping cancer secret. I’m all about awareness, knowledge, shared experiences and education. I blog for me, but also so that other people, who have never experienced cancer before, might learn a bit more about it. And in doing so, they might be better able to spot the signs in their own bodies, to feel braver about contacting their GP about unusual symptoms, and about going along to every screening test that’s available, just in case.


Knowing The Risks

The more we discuss cancer openly, the less power we give it. The things I know now, about the causes, the risk factors and the preventative measures that might have spared me this disease, were things I had no idea about when I unconsciously made the life choices which may have led to it, decades ago. Of course most of the time cancer is just bad luck, but there are risk factors, and I honestly didn't know about any of them until after I was diagnosed.


www.BreastCancer.Org lists the following established and emerging risk factors:

(https://www.breastcancer.org/risk/factors)


Established Risks:

  • Being A Woman

  • Age (55+)

  • Family History

  • Genetics

  • Having had Breast Cancer Before

  • Having Radiation to Chest or Face Before Age 30

  • If you've been diagnosed with certain benign (not cancer) breast conditions

  • Being white (general increased risk)

  • Being black (higher risk of a more aggressive cancer at a young age)

  • Not having given birth before age 30

  • Breastfeeding for less than a year

  • Using HRT

  • Drinking alcohol

  • Having dense breasts

  • Lack of exercise

  • Smoking



Emerging Risks:



Now a lot of those established risks are things you can’t do anything about, and some of the emerging ones are just too impractical to do anything about (viz water). And I’m certainly not advocating that anyone does anything on the basis of anything I might spout on about, but the point is one of information, knowledge and awareness. The more we talk about cancer, about our experiences and our reflections, the more we enable our friends and families to access the information they might need to make informed lifestyle choices.


And that's just breast cancer, there are a hundred other types of cancer, all with different risk factors, many of which we don’t know about until it’s too late.


I absolutely accept that running a campaign that tells people that “X causes cancer” is a legal minefield and no corporate lawyer is going to sign that off, but in the same way that many of us are aware of the risk factors for heart disease, diabetes, liver damage, so should we be aware of the risks factors of cancers. So that we can make choices, based on our risk. Or not. But that’s also our choice.


Screening

Screening for certain types of cancer has been hugely effective in detecting early stage cancers, but mammograms don’t always pick up tumours in dense breast tissue, and the attendance rates for breast cancer screening is a declining 74%, cervical screening tests 76%, and 64% for bowel cancer tests. That’s a lot of people not even attending screening.

https://www.nuffieldtrust.org.uk/resource/breast-and-cervical-cancer-screening


Anyway look, this wasn’t supposed to be a flag waving public service announcement, I’ve gone off-topic again. My point, if I remember it rightly, was that talking openly about cancer can only be a good thing. If it makes someone, somewhere decide to get screened, or tested, or checked out, then it’s been worth it. And if you don’t want to hear it, that’s fine too. But not talking about cancer, stigmatising it, being ashamed or embarrassed by it? That’s all a bit daft.


Inhibitions

At the start of this blog I felt a bit weird and awkward talking about breasts. My breasts. I still do, I was educated in a middle class private convent school, and I still carry the scars. We don’t talk about our private bodily parts, it’s uncouth, it’s rude, and it’s uncalled for. Apparently. But as I have railed against every other women-bashing teaching of 1970s and 80s catholicism, so it seems the time has come to rail against this one too. I have breasts, Two of them. Deal with it. One has a bit of a hole in it now, but it’s OK, I’m alive.


I feel I have now mastered the breast thing though, and can say ‘breast’ out loud without flinching or blushing, or resorting to a comical alternative name. Thank you breast cancer, for liberating my breast unease. Hurrah.


Squeam

But the thing is, I also have cervical cancer. Yeah, that’s a whole other level of squeam. I now have to prepare myself, and you, dear reader, to embrace a whole variety of words and topics that I never thought we’d be sharing. Cervical cancer is a lot more icky than breast cancer, and the treatments are a lot more wince-inducing. Don’t get me wrong, both can kill you, both can leave you feeling mutilated, de-personalised, de-feminised and mentally changed for ever. But there are definitely more bits with cervical cancer, more internal bits, and involving more of those internal bits causes side effects, damage and life-changing impact on the most private parts of our bodies.

And that means I will at some point, (come on girl, you can do it) have to talk frankly and honestly about my womb, my cervix, my vagina, my bladder and my bowels (cue awkward feeling and slight blushing sensation).


So that long rambling shenanigan was to introduce you to my new and revised treatment plan. Are you ready? Brace yourselves.


The Treatment Plan

OK, so I am still having the 5 doses of external radiation to my left breast. This is imminent, I lie on a bed, part of my left breast gets nuked*, they try their best to avoid my heart and lungs, for five days in a row. Side effects are similar to sunburn, can last a few weeks/months after treatment. Also causes fatigue. Small risk of damage to heart/lungs.


*it would normally be the whole breast, but they are trying to limit the amount of toxicity I receive across all of my treatments, so have decided on a very targeted approach. I approve of this plan.


Then the cervical fun starts.


After 2 weeks off (involving more scans, injections, tests and bloods, don’t think I’ll be lounging around) I start 28 doses of external radiation, daily, Mon-Fri to my pelvis. On the Wednesday of each week I will also have chemotherapy. The idea of chemoradiation (both at the same time) is that the chemo weakens the cancer cells and the radiation then nukes the crap out of it. That happens for 5 and half weeks.


In order to minimise damage to the bowel and bladder, you have to have a full bladder and an empty bowel. So I am now the happy recipient of 28 mini enemas, which I have to take an hour before treatment, every day, wait 10 minutes for the shit to hit the pan (do you see what I did there?) then drink a litre of water and bomb it down to the hospital without losing anything from any orifice. Every fucking day, for 28 days.


Other side effects are the usual skin burning stuff (see breast radiotherapy, above) but also burns to bladder and colon, which can cause temporary (and sometimes longer lasting) damage, pain and loss of control. I know. It’s a godawful incontinent shitstorm, which will be combined with the other existing colonic side effects we’ve already met and cringed at. Can’t wait, no really.


Chemo side effects are much as you’d expect, but interestingly, the type of chemo I’ll be having doesn’t usually cause hair loss. So, it seems, amazingly and also oddly sadly, that I won’t lose my hair after all. I really am struggling with this, more than anything else, as I was so geared up for it, and so ready to be proudly bald. You’ve seen the wig shots, you’ve heard my many adventures into wigs, hats and fake eyebrows, and now it seems we’ve got to backtrack down that path after we were so ready to go there. Sorry guys. I know it sounds bonkers to mourn the loss of hair loss, but I feel a bit less validated by it. As if I’m not going through the whole cancer initiation thing. Anyway, ignore me, I’m being a contrary, self-indulgent knob. I’m bloody lucky. For now. But I know cancer’s wankery little tricks, I’m not convinced it’s done with me yet, so I’ll hold onto the wigs and hats, just in case.


So yes, back to the cervical thing. I know, I’m being avoidant, humour me, I’m getting to the bit I don’t want to get to. Right, here’s the deal:


Braccy No Mates

After the 28 doses of external radiation and the chemo, they do something called Bracytherapy. Brachytherapy, or Braccy to its friends, of which it has none, because it is a festering clusterfuck of snivelling shite, is where they put radioactive material inside you, and switch it on. To kill the cancer cells in the face, up front, with a metaphorical sawn-off shotgun. It’s effective, but the methodology is, let’s say, invasive.


There are different methods, but the one I’ve been dealt is this. A week or so after the chemoradiation ends, I go into hospital for a 2 day stay. On the first day I have a general anaesthetic and they insert the rods internally, through the vagina and pack them in place. Then over the 2 days they’ll hook me up to the nuking machine and power up the rods to blast my cervix, 3 times. During this period I lie flat on my back (at a 30 degree angle) and think of England. Wait, no, that’s too depressing. I’ll think of something that I can think of that isn’t the state of the nation or Boris Johnson. Sheep maybe, or cake. Or you lot. Yes, that’ll be nice.


Summer Frights

Then, I’m more or less done. Apart from the 3 weekly herceptin injections, and the daily hormone tablets for 5 years, the ongoing side effects for several months, the possible permanent internal damage, the 3 monthly checks, then the annual checks, and the lumps of dying, stinking tumour falling out of me.


It’s going to be awesome, don’t you think? As 5 separate doctors have said to me this week - I have a lot going on this summer.


Are you ready for the trip of a lifetime?



PS. Oh, and the liver scan thing? That was clear, so I dont have liver cancer. Ring a ding ding. Great for me, less good for Mr G who had a 3 way accumulator of me having 3 cancers at once. C’est la vie, loser.






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