13 February 2013 – All clear again, great, but… (Cancer and Me 23)

I feel a little bit guilty. I think I should be happy, but I’m strangely flat.

I finished chemo some 5 weeks ago, and in that time I’ve had a CT scan and a bone marrow biopsy, both testing for whether the lymphoma can still be detected or not.

The news from the consultant yesterday was that both tests were completely clear.

Surely that’s great? So why I am not leaping for joy, I ask myself? I’m sure when I talk to people they think there are only two possibilities – either it’s gone or it hasn’t. That’s what I used to think. There are so many things you don’t know until you go through it. So I’ve been shying away from talking about it directly.

You see, as I’ve said before, with follicular lymphoma even if it is not detectible in scans and biopsies it is 99% certain to still exist in my body. And it will come back. Hence the rituximab maintenance treatment and the autologous stem cell transplant that I mentioned in the last chapter.

I just can’t get excited when I know that not only will the disease come back and bother me again in the future, but I also have to face another few weeks of hospital visits and treatment followed by two years of maintenance treatment. I may be unfair or oversensitive, but I sense that people see me walking around pretty normal and just want to hear me say, ‘yeah I’m fine, it’s all gone.’ But I know that I’m never probably going to be able to say that with conviction. Giving the good news that the tests are clear just misleads people.

Still, being clear on the biopsy and the scan is better than not being clear!

But I have every sympathy for the 4,000 people who are diagnosed with follicular lymphoma in the UK every year. It may not be an aggressive disease, but its lingering nature makes it psychologically draining. Just how do they cope with constantly living with the knowledge that something is growing slowly within them that will need to be ‘dealt with’ or make them seriously ill?

What makes it worse is that I asked the consultant how they check when the relapse occurs. How do they know that the lymphoma is back and needing treatment? I asked if they routinely do a CT scan, maybe once a year? Apparently not. The way they tell if there is anything of concern is to see me every few months and check if there are any symptoms – lumps, bumps, night sweats, unexplained weight loss. With no symptoms there is no urgent need to treat.

My problem is that the symptoms that led to discovering my relapse were not related to the lymphoma! So if I hadn’t had those spurious symptoms it wouldn’t have been picked up until later. And the only reason they treated me is because it had appeared in a place where it would have caused symptoms fairly soon – I got it in the wrong place. I am worried that I’ll just get extra sensitive over symptoms and become a hypochondriac!

Even worse, in some ways, is the fact that sometimes even when the lymphoma is visible they deliberately don’t treat it – sometimes for years. How do you deal with knowing that it’s there but letting it stay?

I don’t really know how to avoid being a bag of nerves. The consultant recommended ‘denial’, seriously! Perhaps that’s the answer. Since I should be able to get on with life pretty normally, apart from interludes of horrible treatment, why not forget about it as much as possible?

Right now I’ve got too much going on – medically – to do that, but in the next couple of months I’ll start to give it a try. It has to be worth it.