Bad, worse, worst?

Day 113 

General status update 

Fatigue/weakness: very bad, so bad we nearly went to the hospital this morning to get me checked out, but my temperature is normal, so we didn’t. I feel really, really rotten, but it’s probably just the combined effects of 5 doses of FEC.

Anxiety level/insane euphoria (+/- 1-10,000): still obsessing about neutrophils, or lack thereof; am now doomily convinced that FEC6 will end up being postponed. This makes me want to cry.

Nausea demon: he won’t be back till tomorrow

Despair Demon: he keeps whispering in my ear about how awful it’s going to be if I can’t have my last chemo this week, and how I’ll probably get another infection AFTER the delayed FEC6, which will then prevent me from going to Turkey at the beginning of May. He points out how stupid it was to book a plane ticket for a big trip at a time when I’m still going to be very weak and vulnerable. I HATE HIM and I’m glad the Chemo Muse broke his evil little heart.

Chemo Muse: she’s pleased with me today because I’ve managed to write a blog post despite feeling like death warmed up.

Chemo Brian: chilling with Pet Sounds, one of his all-time favourite albums; I doubt he’s ever had the energy to get up on a surfboard himself, but he certainly has a lot in common with that other drug-addled Brian.

State of mind: gloomy

Hair: still attached but looking awful, after not being touched for the last 15 weeks. I really should not complain, though; most of my Cyber Chemo Buddies have been completely bald since about week 3. In this respect at least I have been very, very lucky.

We need to talk about lymphoedema.

If you’ve been reading this blog from the beginning, you’ll know that as of three years ago, I had reached a point in life where many, many things were uncertain, but two things I knew for sure: the first was that I would never again live in London – and we’ve seen just how that one turned out – and the second was that under no circumstances whatsoever would I ever have chemo, given that chemo had (in my view) killed my former husband, Peter, after making him suffer horribly during the last year of his life (he died not from leukaemia, but from a respiratory infection acquired after the highly aggressive chemo for the leukaemia had wiped out his immune system).

So when the surgeon told me that they had found one, just one, pesky little micro-metastasis in my Sentinel Lymph Node – so small you could put it on the head of a pin and still have plenty of room for numerous angels to dance around it –  added that he wouldn’t be happy if I didn’t have some additional treatment, and offered me 3 possible options, only one of which was chemotherapy, it would seem to be a no-brainer that I’d opt for one of the other two, right? Because nothing could be as bad as chemo, could it?

Unfortunately, it wasn’t as simple as that.

The other two possible treatments both sounded, at first, infinitely preferable to chemo: I could either have a full Axillary Node Clearance - i.e. have surgery to remove the rest of the lymph nodes under my right arm, in case any cancer cells had got into any other lymph nodes, as well as the one they had already removed – or have radiotherapy on my right armpit (in addition to the radiotherapy already scheduled for my right breast) which would nuke the lymph nodes to kill any cancer cells, rather than removing them.

Either of those treatments in themselves would have been preferable to chemotherapy from a purely physical point of view – an Axillary Node Clearance is a fairly simple operation, while radiotherapy is swift (only 3 weeks), compared to the 18 weeks needed for chemo, and has far fewer immediate side effects. A little research soon showed me, however, that both the Axillary Node Clearance and the radiotherapy would leave me with a massively increased lifetime risk of suffering one of the lesser known but highly unpleasant complications of treatment for breast cancer, lymphoedema.

As the lymph nodes that drain the breast also drain the arm, significant lymph node surgery poses the risk of impeding the return of lymphatic fluid from the arm. With a standard axillary clearance, the risk of developing arm swelling (lymphoedema) is anywhere between 10 - 60% at some stage in the patient’s life; radiotherapy to the armpit also carries substantial risks. The development of lymphoedema can be very early or very late (often years after surgery), but whenever it happens, the effects can be devastating, and permanent:

‘Lymphoedema is a potential complication of the treatment of primary breast cancer that reduces the quality of life of millions of breast cancer survivors. Patients with severe lymphoedema have chronic, often debilitating arm swelling with resultant pain, decreased function, decreased quality of life, and cosmetic deformity. Because of its chronic nature, as well as a lack of proven long-term treatment methods, development of lymphedema is perhaps the most feared complication of breast cancer surgery for both patients and surgeons.

Cure is not possible and patients have a lifelong dependence on compression garments and other labour intensive treatments to prevent worsening of the condition’s hallmarks—arm swelling and discomfort. As many as 60% of patients who undergo axillary lymph node resection and irradiation will eventually develop lymphoedema. Therefore, an intervention that could reduce the risk of lymphoedema after treatment would be an important advance. None is presently known.’

There are lots of pictures of lymphoedema, out there on the internet: they’re horrible, but I’m not going to reproduce them here. I’m sure you’ve already got the idea.

Not only is there a life-long high risk of lymphoedema to worry about, but also the fact that it can be triggered by any kind of wound or damage to the relevant arm, which means you have to spend the rest of your life obsessing that any tiny cut or graze could have devastating effects. And then there’s the fact that the surgery may leave you with limited movement in your shoulder…

I’m a swimmer, and I need both of my arms to be fully functioning and not overly fragile, so it wasn’t just the risk of lymphoedema, but the risk of not being able to go swimming, that alarmed me. If I couldn’t go swimming, there would be a drastic reduction in my quality of life, not to mention the fact that it would just break my heart. Everything in me shouted that my lymph nodes and my armpit should be left well alone, which was all well and good, had it not been for the fact that the only other choice of treatment available was chemotherapy, my worst nightmare.

Chemotherapy would last for 18 weeks, would almost certainly involve horrible, debilitating side effects, and would put me in danger during that period by destroying my immune system and leaving me vulnerable to life-threatening infections like the one that killed Peter; but once it was over it would be over (it would leave me with a slightly higher risk of  cardiac problems, later on, not to mention developing acute myeloid leukaemia, but these are tiny risks – say 1 in 1000 - compared to the very high lifetime chance of developing lymphoedema). I wouldn’t have to spend the rest of my life worrying every time I got a paper cut on my finger.

I always said that there was nothing on earth that would induce me to have chemo, but in my ignorance I had no idea that there could be a situation in which chemo, however horrible, was the least of several evils. It would have been different if my cancer had been very advanced, if chemo wasn’t likely to make much difference, other than delay, to an already predetermined outcome. But my prognosis was good, and it would have been foolish to ignore Mr H’s suggestion that, in light of the micro-metastasis, further treatment was required to make it even better.

Reluctantly, very reluctantly, I was forced to acknowledge that I couldn’t just dismiss chemo out of hand, as it might be the least bad option. I was going to have to, at the very least, find out more about what they proposed.

 It was time to go and meet the oncologist.

(to be continued)