I have been upgraded.
When we arrive at the breast clinic, my husband and I, the self-check-in-computer by the reception desk doesn’t recognise me. Have I got the date wrong? But no, I am sent on to a waiting room upstairs.
Mine must be the first appointment of the day, because there is nobody there yet. This gives us the chance to have a good nose around.
There’s a whole new set of leaflets with titles like Hair loss support service and Free services for people affected by breast cancer. There is a row of fat novels on the window sill (which you can take home if you don’t manage to finish it during the wait). There’s an oxygen cylinder in the corner, ready to spring into action might I need it.
I have, it seems, entered an exclusive club, the one that only admits Real And Serious Patients. I won’t need to guess what’s wrong with the women waiting here (and when we emerge from the meeting with my oncologist, a good hour later, the room is full of them, but I don’t quite dare to stare as much as I’d like to. I only spot one scarf. What have they all done about their hair?)
I’m even given a golden ticket with my go-and-get-your-blood-taken form (well, a red sticker). “New system,” the receptionist explains with enthusiasm. “Show them the sticker, and you can jump the queue of waiting patients.”
I am procrastinating, of course, telling you all this. What I really need to tell you, what I really wanted to know, is what is happening with my life. My biggest fear was that I’d be going home after seeing the consultant with a bagful of information and treatment choices to think about, but without any firm dates in my diary.
A clear chemotherapy plan would make me much happier, I thought.
Now, I have a plan. And I am indeed much happier because I feel more in control. Waiting for information really is terrible.
The chemotherapy plan did not require discussion, but was simply presented to us.
Six cycles of chemotherapy (for the connoisseurs among you: it’s FEC-T chemotherapy). Each cycle lasts three weeks. I will go into hospital for half a Wednesday to sit in a comfy chair and have my veins pumped full of drugs. Then I’ll go home and spend 20 days recovering from the poisonous effects, before going back for the next shot.
I was ready to argue that I want to start treatment as soon as possible (Get On With It!), but the oncologist took the wind out of my sails by saying, “I’m happy for you to start next week.”
Next week?? Hang on a minute, let me get my head round this first…We settled on the week after, so that we can go away next week as planned – the only family holiday we’ll get this year.
Here it is, then: I will start my chemotherapy on the 6th of August.
Although I am indeed happier having a plan, I also feel completely daunted.
It is the first time in ages that I cannot sleep, and I am typing this at two o’clock in the morning, unable to think of anything else. Perhaps there was some wisdom in letting me recover some strength before bombarding me with information about what awaits me.
Chemotherapy is not going to be a walk in the park.
All the leaflets, information sheets, doctors and nurses keep stressing that “you may get some of these side effects”. Everyone is different, they say. Some women sail through it; some even go back to work during treatment.
But my new breast care nurse (who is part of the patient upgrade package) says, “Most of my patients can’t manage any work at all. Don’t beat yourself up over it.” The oncologist concurs: “You’re looking at six months of treatment, and your employer should be absolutely fine about you taking all that time off work.”
Because despite all the You MAY get… and You are very unlikely to get all of these side effects…, my oncologist paints a vivid picture of the shape of the weeks and months ahead. The following is more or less guaranteed.
First days after chemo: see it as having “a planned bout of flu”. Nausea, in particular. Was I nauseous during pregnancy? (Yes. Terribly. For nine long months.) The doctor makes a note: “Better give you some super-strength anti-sickness medication beforehand. I find that women who were sick during pregnancy are the ones who are rather sick with chemo.” Hm.
Second week: lowest point for the white blood cells. As these cells are needed to fight infections, this is rather a risk. The slightest temperature or feeling unwell, and I must be rushed into A&E for emergency antibiotics. Does the husband travel a lot? Not at the moment? Just as well, because otherwise you’d have to think about who is going to do the rushing when she wakes up sweating at three o’clock in the morning.
The third week is a reasonably good one. If you want to plan any trips or treats, this is the week to do it in. (“But be prepared to cancel it at the last minute, because you just can’t predict. Better not go abroad. My patients end up seeing quite a lot of England.”)
The list of likely side effects is long, and I won’t bother you with it.
You will hear about it when they happen, no doubt. (If I am up to blogging, that is.) But I’m sure you can imagine some of the joys that lie around my corner. Hair loss, for one. That happens after about two or three weeks, I’m told.
The chemotherapy drugs change halfway through. After describing the trials that await me during the first three cycles, the oncologist tells me that the 4th, 5th and 6th cycles are worse.
They give you steroids in order to cope with the side effects of the last three cycles. They stand by at all times, ready to change the drugs to something slightly less demanding if your body protests too much. I’m trying very hard not to think about that yet.
Then, after all that is over, I may or may not have radiotherapy.
That choice will be discussed with me a few months down the line. The issue, apparently, is that I am a bit borderline. Several tests and treatments, including radiotherapy on top of the chemo, are standard for women who have four or more cancerous lymph nodes. I had three. It sounds like such a small difference, just one tiny extra lymph node which would tip me into need-extra-treatment territory, that I’m inclined to think I’d be better off having it too, just to be on the safe side.
This was the only long debate today: should I have a full scan of my liver, lungs and bones to see if it shows up any cancer cells that have emigrated across the borders? Again, this is standard for the 4+ lymph node scenario, but not for me. The oncologist says she is happy to request the scan, and in the end I decide to take it, putting up with the risk of the scans showing up all manner of questionable blobs and blurs that later turn out to be innocent.
And after all that is over (and we're looking at the start of 2015 here), I will be put on hormone treatment for ten years.
So by the time I can stop collecting cancer drugs from the pharmacy, I can go and collect my Freedom Pass (a free London transport pass for the over 60s).
Goodness me, it will be freedom indeed.