An even keel

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.

1 down, 7 to go

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.

Cath ‘n’ Brian

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.

Some thoughts on holidays

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.

It’s been a while…..

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.