So I haven’t blogged for a while. First there was a lot to say, but it was hard to say it. Then there was little to say. So here I am.
The “lot”, first. The results from the op. On the good side: Genghis was smaller than the original estimate. It weighed in at 35 mm compared with the rough 4 cm estimate when I was first diagnosed. So not only was it a bit smaller, but it also hadn’t grown rapidly in the four weeks from diagnosis to excavation. Also good: the doc got clear margins around Genghis so no need for a further op to remove any more of my boob tissue. And Genghis was entirely triple negative, so no need for Tamoxifen (which brings on an early menopause) or Herceptin.
On the bad side: the lymph node had Genghis bits in it. Not just a few random cells but a 2 mm lump. 2 mm is apparently on the dividing line between micro and macro. And then the doc used the scariest word in the English language. It turns out that the scariest word isn’t “cancer” or “malignant”. The scariest word is “metastasis”. The 2 mm Genghis bit was a metastasis.
That was very hard to hear and talk about. You’ll hear some people say that it doesn’t count as a metastasis as it’s only local and not distant. But trust me – if a doctor uses that word, in whatever context – it sounds bad. Really bad. It took me several days to get over that body blow. It was definitely a low point.
The doc wants to take out all my lymph nodes as a result but wants chemo to happen first. So we had a very speedy referral to an onc. We met the very nice Rob Stein the next day. We had a long chat and started planning. Only at that point did it become clear that he will only treat in Harley Street. Big “computer says no” moment. So he got on the phone to the other onc who works with my breast surgeon and the next day we trot off to see Onc 2. He will treat me locally so it’s much more practical.
They say everything happens for a reason and this was no different. Stein wanted me on a chemo regime called Accelerated AC Taxol. It’s a fast and furious course, harsh but done in 16 weeks. Onc 2 turned out to be the fabulous David Miles. Miles offered me a choice between his usual regime, a more bearable but longer course (24 weeks) and the regime Stein had offered. I went for the latter. If I hadn’t seen Stein first I would have had the 24 week course. So despite the schlepping between the 2 of them, it worked out well.
But the other good bit was Miles himself. He has the most wonderful personality and an obviously excellent brain. We hit it off. And for those who believe in Fate, how about this – his wife is the geneticist who we saw in connection with Joey’s deafness. Joey is now doing brilliantly. I hope the gods (and Miles) will do the same for me.
We set a date to start and talked about all the practicalities. And then I was free to go. Free to go on holiday. Free to have some family time.
And that’s the “little”. Little to say because the past week has been gloriously free of doctors. We are soaking up the sun and relaxing in the Algarve. I never thought we’d be able to come but here we are.
I wish I could say I’m able to forget about Genghis while I’m here. But I suspect that will never be the case. But at least I can relax and spend time away from the doctors. And that in itself is something.
1. Sun and sleeping are good. Physically and mentally.
2. Eating naughty food and watching lots of TV should definitely be encouraged on holiday for kids and for adults.
3. Physical distance from hospitals and doctors makes a biiiiiiiig difference.
4. Family should be treasured (even when the smaller ones are having a melt down).
5. Your brain doesn’t go on holiday. Being away from all things Genghis doesn’t stop me thinking about it.
5. I like holidays. Lots. I hope I beat Genghis once and for all so I can go on many more.
So on Monday I had to get over my holiday self quickly as it was time to get my portacath fitted. This is a small port that goes beneath the skin under your collarbone. It means that the chemo can go straight in and you don’t need a cannula. If you are relying on a cannula the chemo nurse has to find a different vein each time (cos chemo is reet mean to your veins) and it can hurt lots and lots.
I decided that my portacath would therefore be my friend. So I named her Cath. For short. A nice vascular surgeon put her in me, having ensured a big dollop of sedation first. The sedation was a bit grim but thankfully I didn’t vom when I woke up like I had done on the general anaesthetic. And there she was when I came round in recovery. Cath. Just there. Hello pal. We will have a bit of a journey together.
Also there when I came round was Brian. I don’t know much about Brian except his name, his approximate age (70 ish) and the fact he had just had a knee replacement. But I came round to the sound of his name being shouted opposite me in recovery by two nurses who were attempting to administer oxygen. In his post operative delirium Brian wasn’t having much of this. For a 70 year old man he was pretty strong. One of the nurses did a great Nurse Ratchet impression. She was properly discomforting, threatening he’d die if he didn’t allow the oxygen mask to be out on (!) and telling him in no uncertain terms that she always wins (double !!). If I were Brian I think I might have opted for a rapid right hook to the jaw. Poor man.
I was out of recovery fairly quickly and out of hospital not long after (pausing in between merely for a drink, a sarnie, a pee and an ECG, all pre requisites for discharge). And then home, so Cath and I could become properly acquainted.
So now I’m ready for the big C. That’s chemo, by the way. Already done the cancer. It’s time to poison myself as a life saving measure. It is completely screwy but totally sensible. It’ll be grim but great. It’ll make me feel rotten but ensure I feel full of life. So there are only 3 words for Cath and me at the moment: BRING IT ON.
I had my first chemo earlier today. Here are some random thoughts on the whole thing:
– My wee is red. Bit like a period. What if I have both at the same time?!
– So far I feel like I have a hangover but not a monster one. It’s tolerable. I’ve definitely had worse.
– My chemo nurse is like a little angel. Very kind and sweet and lovely. Very sensible.
– I have a big plastic box to keep all my pills in. Makes me feel more like an ill person than most of the other shit I’ve faced so far.
– Thank The Lord for private medicine. Got given shed loads of anti sickness drugs. Apparently they aren’t all given routinely on the NHS.
– Frankly it’s all a bit bollox but I will get through it.
– I feel it’s important to tell everyone how I am feeling. If I had a friend going through this I I would be really curious but wouldn’t want to ask. By being open I’m saving them from asking.
Chemo plus 9 days and I’m back on an even keel. It took time. Longer than I thought. The nausea lasted no more than 18 hours. I sweated, peed and pooed it out fairly quickly. Then there were about 24 hours of feeling wrong but not ill. Then a couple of days of recovery. Then it was chemo brain. A weird, floaty, dizzyish feeling that I couldn’t quite shake. It was a bit like being drunk without the drink. It made me anxious and a little bit depressed. What if this was it? What if it was going to stay this way until chemo is over? Or longer? But slowly, slowly, slowly it cleared. And yesterday it had gone. And today was a bit more normal still. Thank goodness. Thank goodness.
And now I have 5 more days until I do it again.
I’m just home from my second round of chemo. It was fine. So far I feel woozy and heavy legged but not ill. But I’m waiting for the nausea to hit which is an odd thing. Sitting. Waiting to feel horrid.
It was all very cheerful at the chemo centre this morning. The lady in the room next door wanted to know where my scarf came from as she really liked it. We had a nice chat. Today was her last chemo – lucky lucky thing.
Scarf. Yes. My head is now shaved in anticipation of my hair falling out. So far the stubble is holding on. It makes me wonder if I’m not going to lose it after all and if I will have shaved it for no reason. Another odd thing – hoping my head stubble falls out. But then I remember that it is bound to drop out. My mum and husband both like the shaved look. Personally I’m happy in a scarf. But good to know that I don’t look too hideous without any hair! Here’s a photo:
I think the scarves are quite a nice accessory and they keep me warm. It’s a good excuse to buy new clothing (as if I needed one!).
Yes it’s amazing. I feel almost normal. No spinning rooms. No nausea. No floaty floaty. Really, it’s amazing. Hard to believe I had my chemo only yesterday. Was it the extra anti sickness drug? The extra jug of water? The baked potato for lunch? The mid-morning biscuit? The slower release of the second drug? The combination? The fact I’ve done it before? Who knows? Who cares? So far, so great.
I’m still a bit tired. But it’s NOTHING. This I can do. Amazing.
My hair (rather, stubble) is also holding on so far. I have a couple of very small thin patches and a patch that occasionally feels like it’s going to drop. But otherwise it’s growing! It won’t stay, of course. But it’s quite amusing that it has so far.
Final though for today. It feels like it’s almost time to go public with the blog. Almost.
So my game plan is to keep it together. Keep going with life as normal, except when interrupted by chemo, or doctors, or any other Genghis s**t. But it’s hard. This morning, for example, I’m exhausted. I’ve woken up feeling almost as tired as when I went to bed. So the kids are playing up and I’m lying in bed trying to ignore them rather than dealing with them. Hardly keeping it together. My standards are definitely slipping.
Yet I’m called on to keep it together for the sake of others. My beautiful girl has been sad about the whole situation recently and her being sad makes me sad. But I need to keep it together for her. The girl who runs the nail bar round the corner (I was her first client when she opened) burst into tears on me in the street yesterday when I told her what has been going on, and told me her heart was breaking. I ended up comforting her. Keeping it (and her) together. A virtual stranger.
Don’t get me wrong. It’s not that I want to fall to pieces. I just don’t want to have to be so conscious of the thing the whole time. I am fed up to the back teeth of talking about being ill or about things to do with being ill. I want to have a conversation that has nothing to do with it. That is why work is a blessed relief. It’s just ironic that work makes me so tired, and therefore makes it that bit harder to keep it together. Ha.
Some random thoughts as I sit in the Big White Chair waiting for the poison:
– This is all a bit shit.
– Generally I’ve been feeling upbeat but for some reason today the crap is getting me down.
– That said, I know I will bounce back. I hope it’s sooner rather than later.
– Fizzy water is my new top thing. It gets me through chemo. It gets me through the vile mouth stage post chemo. And at all other times it still feels more exciting than still water. I need to get out more!
– My chemo is administered in a windowless room/pod. It makes me miss the outside. Being outside is good if you’re ill. Fresh air has magical properties.
– I need to think about nice things to cheer me up. Here are some nice things:
* My family
* The smell of the sea and a summer breeze
* Pink champagne
* My girlie friends
* A good giggle
* Winning a new piece of work
* Sleeping solidly the whole night through
* Salmon and avocado sushi rolls
* The shoe shops in Madrid
* The moment you walk into a hotel room and see just how nice it is
And so on. Now I’m smiling.
Happy birthday to me! 38 years ago today I emerged into the world. 10 years ago today I was preparing for my wedding just a few days away. 1 year ago today I was having a nice day off work. And today I am preparing for my 5th chemo session tomorrow.
Don’t get me wrong. I’m having a nice day off work. Nice gentle things planned. Lots of lovely presents. Lovely messages. I’m not unhappy. But I am feeling a teeny bit sorry for myself. Why? Because I can’t get away from being the patient. All the lovely messages telling me how strong I am and how this coming year should be a good and healthy one. Lots of lovely gifts to indulge me. Goodness I sound ungrateful! I don’t mean to. I really really really appreciate it all. But I’m just a bit sad. And I have the threat of chemo tomorrow hanging over me which doesn’t help.
But I am also proud. Proud of my friends and family and proud of myself. On the weekend I had a fundraiser for Breast Cancer Care in lieu of a birthday bash. My friends came and donated masses. Those who couldn’t come donated online. And then I took the leftover goodies to work and asked work people to donate – and they did. And then for good measure I posted the online donation link on Facebook and even more people donated – including one perfect stranger and one guy from college
who I’ve barely seen since since I left and who was hugely generous. All in all I’m now up to about £1400. Not bad for a night’s work. And I hardly did the work – it was mainly my fabulous Mum who catered and prepared the thing.
So good comes out of adversity and the support of friends and family is truly amazing. It all means I only have thing left to wish for when I blow out the candles on my cake – that this time next year Genghis feels like ancient history.