Waiting for Answers

The surgeon told us they had requested the lab push through the brain biopsy results urgently, that with lymphoma every day counts. The biopsy was taken on a Friday morning and they expected the results by the following Wednesday, he would call as soon as they came in.

So we waited. There is nothing else you can do but wait and yet the waiting feels endless, the need for answers pulling against the not wanting to know bad news. My husband, ever pragmatic and grounded, kept saying the same thing in those days, “we just have to wait and see, there is nothing we can do but wait.” He was still recovering from the biopsy itself, on high dose steroids and barely sleeping.

By Wednesday afternoon we were sat together on the sofa, the TV on, but neither of us really watching it, both of us aware of the clock edging towards four o’clock, wondering if the call would still come that day.

It did, just as they said it would, and the results confirmed lymphoma.

It was such a strange feeling. There was a sort of relief, we now had the answer, no more wondering, no more hoping it was something else, we knew exactly what we were dealing with. So what’s the plan?

The surgeon told us my husband would be referred to the haematology team at our local hospital, who we were told were very good and we should hear from them by the end of the week. My husband asked if what he has can be cured. The surgeon said he couldn’t answer that, the haematology team could answer all our questions, but that it really will come down to how he responds to treatment. We were encouraged again to ask them about the two, five and ten year survival rates.

As soon as we ended the call we started letting family and close friends know, and that’s when the emotion hit. We were both in tears and I couldn’t stop them, I was trying to process everything and I felt so, so scared.

What’s going to happen?

Are we going to get through this?

Am I going to lose him?

The responses that came back from people meant more than I expected, people telling us that if anyone has the resilience and the mindset to get through this, my husband does and to trust the medical professionals, that they know what they’re doing. I held onto that.

The call from our new haematology team came that very evening and we were so grateful for it. One of the key workers rang to reassure us, explain who they were and see if we had questions at that stage. I remember them saying to my husband, “we do want to treat you.” I, of course, started turning those words over in my head through my lens of fear… What an interesting thing to say I thought. Is there any suggestion that treating this is futile? What do those words mean? A meeting was arranged with the consultant for the following Tuesday and the wait for more detailed answers started all over again.

We decided to write down every question we had. There were sixteen in total, so we reordered them into priority, the top five we absolutely needed answers to, then everything else.

What is the lymphoma sub-type?

What is the prognosis?

What are the two, five and ten year survival rates?

What are the treatment and recovery cycles?

How will my husband’s Multiple Sclerosis (MS) be managed throughout treatment?

… and so on.

Those six days felt like forever. The Monday was a bank holiday and also my birthday, though neither of us were in the mood for celebrating. Rather than resting, I spent the day trying to finish an academic journal article I was writing about effective leadership coaching in higher education, drawing from findings in my MSc dissertation, it needed to be submitting for peer review. I wasn’t in the mood and could hardly concentrate, but life was carrying on its ordinary demands alongside everything else. The rest of the time we spent checking back over our questions and preparing for the next day.

It was somewhere in those days, after the lymphoma had been confirmed but before we knew anything more, that my husband looked at me, tearfully and said, “I don’t want to die.” That hit me harder than almost anything else in this whole experience, you want to say you won’t and know it’s true, but you can’t promise that and in that moment, it taps straight into your own fear.

When the day of the meeting came, I felt anxious. What extra details were we going to learn? What would have changed by the time we walked out of there?

The consultant confirmed it was Non-Hodgkin lymphoma and based on the data they had, they believed it was Primary Central Nervous System Lymphoma (PCNSL). The more detailed molecular testing wasn’t back yet to confirm the subtype, but they were assuming it was Diffuse Large B-Cell (we would later find out it was something else). My heart sank. I had prayed it wasn’t that, I knew how rare and aggressive PCNSL was. Without treatment, a person’s decline could come within weeks and according to Google the five-year survival rate was thirty to forty per cent. I decided not to tell my husband what I’d found before the meeting.

The consultant, though, was far more encouraging. He said that although rare, they had treated many people with it and that they would be treating with curative intent. I felt like a weight had lifted. I understood that curative intent means that’s the aim, not necessarily the outcome, that everything comes down to how my husband’s body responds, all of which is essentially outside anyone’s control, but hearing those words reinstalled the hope I so badly needed.

He explained the plan, four rounds of chemotherapy using the MATRix regimen, consolidated with an autologous stem cell transplant. The treatment would be intensive, with each cycle of chemotherapy lasting twenty-one days, around six of those days as an inpatient while the chemotherapy was administered, then weekly outpatient visits for bloods. He would have a PICC line inserted before the first round, which would stay in place for the entire treatment period, used for everything from chemotherapy to bloods.

I forced myself to ask the question... “What are the two, five and ten year survival rates?”

We were told that with chemotherapy alone, the five year survival rate was thirty to forty per cent, just as Google had said, but if my husband was in remission when the stem cell transplant took place, that percentage rose to seventy to eighty per cent. I’m aware that is not one hundred, but it is still so much better than it could have been. The hope remained in place.

The consultant said they needed additional scans before the treatment started, to check whether the lymphoma had spread elsewhere. If it had, the outlook was less promising, they would still treat with curative intent, but the regimen would need to change.

I felt that sinking feeling again and found myself in the strange position of moving from praying it wasn’t PCNSL to praying that’s all it was. I wished it was neither, I wished it wasn’t cancer at all, but here we were, hoping for the best version of a bad situation. The whole thing is exhausting in a way that’s hard to describe.

You start to wonder if hoping, like worrying, is wasted energy, one more thing adding load to an already overloaded nervous system. Maybe it is, but then I think, if we don’t hope, what’s the point of feeling anything at all. Whatever the answer is, I can’t stop doing either. It’s part of who I am.

The additional scans were a full body PET-CT, where he’d be given a radioactive sugar solution that would let any lymphoma elsewhere in the body show up, along with a scan of his eyes and of his testicles, both places lymphoma can hide. I felt myself holding my breath again. Here were the next steps, we just needed to focus and take them one at a time, do the scans and hope...

Thankfully, all the additional scans were clear.

Looking back at those weeks now, what stays with me isn’t just all the medical detail and information, it’s how my husband and I kept finding ways to hold each other up. When one of us went under, the other was somehow still standing and able to give support, then a day or two later it would reverse. Neither of us carried it alone, even when it felt that way in the moment. I think that’s what got us through those weeks and what continues to get us through each week since.