Radio Gaga

Aargh – – not so much drama dahhhlings ce soir but more, reflective stuff.

Today, I should have had chemo – every three weeks, every third Wednesday, since March 15th. But I don’t have to – I’m done. At the end of the last one I ended up in Holby Chemo Casualty A&E city for a three day mini break, but that was a blessing – read on.

I’m about to enter a new phase. I’m afraid this blog is not a funny one, but there’s some things I want you to know. And I think the time is right now.

What’s prompted this, you wonder?

Well, this. I spent some amazing hours this afternoon with some dear friends who I knew in Bath – J & T- when I took my first professional job there. It’s the county of my birth, and near to Bath is my original home. I’m from Somerset, born and bred, strong in the arm and thick in the head! That’s me, 100%. I sez it as I seez it.

Anyway, when I first knew J&T, 25-odd years ago, T’s brother got testicular cancer. That was a time when chemo took 12 hours and the drugs were so shit that T’s bro couldn’t move his eyeballs without wanting to chuck up in a cardboard bowl, or anywhere.

Along this road (I might have said ‘journey’ up front in this blog, but please disregard that, it’s hideous), many things have cropped up which could have de-railed me, and my two, much loved carers.

I’m going into a new phase tomorrow- just a bit of radiotherapy, every day for a month – a piece of FECing piss compared to pissing FEC. I’ve no idea how it’s going to go, but as usual, my assumption is that I’ll smash it before it smashes me. Worked so far!

What’s prompted this post is hearing about, and remembering, T’s brother S, who is very alive and very well, busy working in Switzerland don’t you know – and all of that making me realise, as if I didn’t already, how bloody lucky I am -and how much needs to be said to de-mystify CANCER, and its treatment, today. Or at least, breast cancer. It’s the only one I’ve had. They are not all the same, and even the same ones are vastly different. I only know about mine. So this is for S and his family; I cannot imagine what he went through all those years ago.

The C word: nasty, isn’t it. Not one you want to hear.

Luckily for me, I barely heard it at all – the diagnosing consultant was so rambling, mumbling, shy and crusty, I couldn’t work out if he’d said I’d got it or I hadn’t – bloody hell, that was poor. I only knew because a nurse turned up with tissues – but I had nothing to fill them with.

Like it or not, we’re nearly up to one in two of us who will get this irritating thing. My thought was never, ‘why me?’ – more, ‘why not me??’ So, from my point of view, I needed to woman up and crack on. Unlike S’s cancer, mine is absolutely the best one to get, at the stage I got it. How lucky I’ve been.

I’m reflecting in this way, because I have thought long and hard about doing so; I’ve thought about poor S and what he had to go through 25-odd years ago; how much people benefit from R&D around cancer, and what a difference that has made to patients’ lives over the years. Patients like me.

Ok readers. A few tips, from my point of view, and also, what I wished I’d not said, and had said, to cancer patients in the past.

1. I know everyone we know has had, or is having, cancer or cancer treatment. I’d say it does not necessarily benefit the new patient to hear about those experiences. As I read recently, “if life serves you lemons, don’t tell me about your Auntie who died of lemons.”
Ask the person how they feel about it. Take your lead from them. Don’t make it all about you, because you are frightened of the disease; it’s not you that has it. Relax and listen.

2. Armchair Oncology: Just… stop. Stop it now please, never do it again – unless you are an actual Oncologist who happens to be sitting in an armchair when we’re chatting.
I think there’s a bit in all of us, when we hear that someone known to us has cancer, the first thing we want to know is, ‘of the what?’.
Once we know that, we do a 30-second mental scan, comparing what we know of ourselves, to what we think we know of the sufferer. It’s natural: Maslow had a point when he put Survival at the base of his pyramid of human needs. Assume nothing: it’s one in two, folks.

3. Following on from the last point, if you have a view of why someone has got cancer ‘of the what’…it’s probably best to keep that one to yourself. Patients, I’ve heard, really don’t appreciate that sort of opinion voiced to them, unless it’s from their Oncologist. It’s not a conversation I’ve had with the five different Oncology consultants I’ve had in my own particular process. It’s irrelevant, the ‘why’ – it’s much more about the ‘how’ – i.e., how are we going to get it out of you so you can survive decently. My Onc and I talked about this and we resolved to joke that I have breast cancer because I have breasts. I’m not expecting testicular cancer any time soon. If I get that, I’ll go back to the people who told me why they thought I got breast cancer, settle down by their armchairs and readily listen to their opinion.

4. Appointments- social or otherwise. If a patient undergoing treatment makes an arrangement with you, at a certain time, please try to stick to it. That person may not have seen anyone all day, and all week, and will be looking forward to seeing you. (This goes for bereaved people too.) These patients will likely have built in a rest before you come; tidied their house even though they were knackered; be waiting at the window ready to put on a show. For these people, turning up even ten minutes late can be distressing.

5. People have been amazingly, unbelievably kind and thoughtful – I’ve had offers of absolutely every kind of  help; dinners have turned up at the door after chemo days; I’ve had lifts to every bone marrow injection the day after chemo; I’ve been sent socks to keep my feet warm during treatment and people have messaged me on the day of chemo, every time, to wish me luck. It’s been amazing and I am so lucky and grateful to have such fab friends. Something which a few of them have done might sound small but it’s been incredibly cool. It goes like this. People will kindly offer to do your shopping for you, and that’s fab, because Tesco after a chemo day is not fun. However, the problem with being British is that you’re far too British to accept. Trust me, I’m never going to ring you up and give you my weekly shop to do. Never. However – if you text or whatsapp me (better than ringing – there’s lots of sleeping involved in this lark), and say you’re popping to Tesco later and do I need anything…well then I might look in the fridge and realise I’m nearly out of milk. Britishness permits that, just about.

6. Hair. My oncologist told me that most breast cancer chemo causes hair loss. It’s the E in FEC (not the F, as I mistakenly said in a previous post). I opted to give the cold cap a go, and as a result, I’ve kept, say, 70% of the hair on my head. But even if I’d opted to go without the cap, and lose it all, why does everyone tell you you’re going to be better off going to the hairdresser and having your hair cut short before chemo even starts? Crikey, I’ve been utilising every strand I’ve got left because I can comb it over my burgeoning bald patch and become the master of disguise! I’m not ashamed of the loss – I’m actually rather proud of it – but it makes it a heck of a lot easier for other people,  because, just like when you’ve got a massive spot on the end of your nose, it’s really hard for people not to stare at the thing. And why do people assume I’m going to get some comedy wigs? A clown, a 70s Afro, a pink bob. Perleeeease. I’m all for poking fun at myself, as I hope my normal blog posts show, and I spend 90% of my life laughing my head off (the other 10% sleeping).  But to put myself up as a laughing stock? That’s different. Very, very different. I know it works for some people – I get it, and I really admire them for it. But we are all different; there’s no right or wrong response; you find your own path. This one was not for me.

7. What to say
This is a toughie. Now I know more, I feel so awks about all the naff things I’ve said to others in the past, even to my own mum. Sorry mum up there flying high  –  what a donkey I was.  The thing is, it is really, really hard to say the right thing – how are we meant to know? And guess what – you don’t have to say anything – it’s not compulsory. Make like that classic artist of our time, Mr Ronan Keating – you say it best when you say nothing at all.

The worst thing I’ve heard was from a fellow BC sufferer, which literally scared my pants off. (This was nearly as bad as when someone told me I ‘obviously wasn’t having proper chemo as I looked too well. Give a girl a break!! I can’t win, lol!!). But then the best thing I’ve heard was also from a fellow BC sufferer, who reinforced my view, from her own experience, that you put your head down and bloody crack on. Keep the shit bits with your family, push drama away, get those dramatic people away from you, find your path and crack bloody on.

The best thing I’ve heard from a non-BC sufferer, on breaking the news, was;

“Oh shit! I don’t know what to say!”..

Followed by:

“I must go and get myself checked out”

Yes, people with breasts, women and men alike, you must. This was absolutely the best reaction I heard.

I also heard, “I’m so sorry this is happening to you.” I loved that. Do that when you hear of someone new, it’s really heart-warming.

Whatever you do, never say “At least they caught it early.” Unless you are an Oncologist, this is meaningless. And anyway, in my experience, they don’t tend to say it. Early detection is very important to outcomes – vital, in fact – but small is not always beautiful, and neither is it necessarily early.

Do you know how I knew it was serious? Like, my lump thingy?

I am officially lumpy. I’ve had 3 mammograms in the last five years because I’m good at checking my boobs and, because I had an early LadyPause, two years ago, just like my mamma, my hormones are confused and I get cysts in my boobs.

When Escape to the Country isn’t on, I like watching 24hrs in A&E – I just so admire what they do, and having been treated in A&E about two weeks ago because of C stuff, I was keen to observe how it worked away from the telly.

Anyway, there was a nurse on 24hrs in A&E about 3 years ago. They were doing a little interview with her ahead of the blood and guts bit. She’d felt a lump in her breast and then looked in the mirror to see how the two boobs squared up. She noticed a tiny puckering in the skin around the breast which had the lump. She said, ‘at that point, I knew it was cancer.’

When I got out of the shower on December 28th 2016, having felt, but not wanting to face up to what was going on for three months prior, I thought of that nurse and I looked in the mirror. The puckering was there. The next week I had mammograms and biopsies and scans on not one, but three lumps. Four weeks later they narrowed it down to one offender, and hoiked the little (growing) FECer out.

Girls and boys – like me, we don’t check our breasticles because we don’t want to find anything. Please woman and man up. It’s so preventable and so treatable.

My other piece of advice? Sack Dr Google and make friends with the Macmillan website, and the many leaflets they produce. They are for patients and for carers/those closest to the patient, or anyone who feels they want to know more about any cancer. There can’t be a question they haven’t answered, and it’s done in a sensible, no nonsense way. It’s also beautifully written, respectful of patient and non-patient, and really, really informative. No drama there, darlings. You’ll find a similar approach on breastcancercare.org.

But for the patient, the only person you should really, really listen to, for detail, is your Oncologist; they know your insides, your specific situation, your tumour, your medical history and that of your family. There is too much generalisation, I’ve found. You could have the same sized lump at the same stage in the same place as me; yet its characteristics will be totally different, and we will respond totally differently to treatment. Pardon the pun, but you can’t just lump them all together. That is why I’ve been at pains to keep saying, in my blog posts, that anything I’ve written is only medically accurate for me. Much like this post too – this is MY take on the things I’ve heard and experienced. You might be a patient too and have a totally different view.

I’ll be lolling my head off from under the radio beams tomoz – I’ll keep you all posted, if you want.

****quick update: back from radiotherapy and it was incredible, overwhelming, scary, fun and bloody hilarious! So you can expect a more typical post from me in the coming week or so. Thanks for all your great support, as always xx ****

 

 

 

 

Sent from my iPad