In limbo: cancer progressing but no treatment plan yet

posted in: Cancer 0

Phone consult day. I dumbly try to take notes as the doc explains things gently but firmly. There’s good and not so good news. The proteins are up from 13.6 to 20.5, “a consistent trend”, the haemoglobin is down from 148 to 137, “comfortably normal but a downward trend”. The CT showed that the liver and kidneys are fine. The lymph nodes are enlarged but not huge. “We don’t expect them to cause problems – they’re in keeping with the blood results”. Part of the bone marrow biopsy test is back and “is consistent with previous lymph and bone marrow activity”. So it’s ‘consistent’ with itself … with cancer … I’m really not sure what that means.

It will be another 2 to 3 weeks for the rest of the results to come through but treatment is likely to start soon. There are two possible options:

1. “Ibrutinib, which works well with Waldenstrom’s – if that’s what you have. It usually works for several years.” ‘If that’s what you have’ reverberates in my head. That’s what they told us he has. Don’t they know? Does it make a difference? Apparently yes, which is why they’re doing further tests on the bone marrow sample.

2. An autologous stem cell transplant. Wow. “It’s not curative but buys time over and above other treatment options … You’re relatively young and at your age we might run out of treatment options.” Apparently if Husband is to have a transplant then it needs to be this treatment or the next or he might be too old for a transplant.

Husband puts the phone down. I look at my exercise wristband. It’s been buzzing during the telephone call and is showing red. Apparently my heart rate is too high and I should slow down. I didn’t even know that it sent warnings – I’ve certainly never had any when exercising!

We have to prepare but we don’t know what to prepare for. Husband looks fine, just a bit tired. He smiles ruefully, “I’m never sure what’s down to the lymphoma and what’s simply due to being 63 in a UK winter.” It’s difficult to imagine how ill he’s going to feel quite soon.

As ever I try to focus on the limited things I can do. I call the dentist to explain that Husband will be starting chemo soon so won’t be able to make his appointment in a few months. We’d be grateful if they could fit him in if they get cancellations soon. They have one for tomorrow. Something is going our way!

I am again struck by how amazing the NHS is. People in the USA have to worry about the cost of different care options or worse still, they just can’t access care.

Nonetheless, this limbo is horrid. Husband isn’t sick enough for treatment to be needed urgently but he can’t get on with his life because the cancer is progressing. The NHS is marvellous but it is slow, particularly at the moment. So we wait…

Next appointment is in 4 weeks. But the cancer moves on.

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