It seems as if in recent years I've spent a lot of my life waiting. It began before I was diagnosed with multiple myeloma, and it has continued ever since. I would imagine that this is the sort of waiting that is familiar to many readers of The Myeloma Beacon.

I remember pre-diagnosis, when I felt ill all the time, I was waiting and waiting for some doctor to work out what was wrong with me and help me to get out of the terrible pain I was suffering from.

Then, once I arrived at a hospital and saw a myeloma specialist, there was all the waiting for the initial results. What disease was I suffering from, then what sort of myeloma I had, then what stage the disease was at, then what the cytogenetics and the cell markers were. Lots of tests, results, and waiting.

After I started treatment, the theme continued: Would the induction therapy work? Would the pain subside? Would they be able to collect sufficient stems cells? Would the transplant be successful? Every week, or indeed every day, I was waiting to see what fate had in store.

I thought that, when I had recovered from the transplant, some of the waiting might abate, but of course it continued. Weekly check-ups to find out whether my immunoglobulins had started to recover, whether I still had an M-spike, and whether there were any detectable myeloma cells in my marrow. Tests, tension, results, and still plenty of waiting about.

As I have mentioned in previous columns, I was fortunate in that my treatment was successful and I went into remission.

So was the waiting over? Could we relax for a bit?

Well, not really. There was a new phase to come: Maintenance therapy!

Could my somewhat battered body cope with the Revlimid (lenalidomide) at a lower, but continuous dose?

We'd have to wait and see!

At that point, the frequency of blood testing dropped to every three weeks as long as everything seemed to be stable. There were, and still are, some periods when my body seems to cope well with maintenance. However, sometimes things don't go so smoothly, and I succumb to infections. This has led to further times of more rigorous testing and, of course, waiting for results.

After about a year of being on maintenance therapy, my husband Graham and I started to feel that we wanted to leave Singapore and return back to our home in Scotland. We both wanted to be home, but we were unsure about the move, as we felt reluctant to leave the very supportive medical team that had looked after me so well.

But what were we waiting for?

Relapse? Surely not. Surely we should try to live life to the fullest and enjoy our house and our country and be with our friends and family. We'd waited long enough. We decided.

The return home was accompanied by many changes, some good, and some not so good.

While still in Singapore, we had found out that Graham was suffering from prostate cancer. Shocking as this news was, we were coping with the diagnosis fairly well because tests had shown that the tumor was not aggressive and there seemed to be little need for urgent treatment.

However, on returning to Scotland and having a checkup locally, everything changed. The doctors here were quite sure that treatment could not be delayed as the cancer appeared to have spread. We couldn't believe it; it didn't seem fair.

So we have entered a new phase: we are adding to, rather than subtracting from, our time in oncology departments. And along with this new phase has come some more waiting. There is the all too familiar waiting for tests, results, and treatment plans.

But there is also a new sort of waiting.

We can't make plans, there are too many hospital appointments ahead, we've got to wait. Perhaps un­reason­ably, I thought that we would be much more free now that we are in Scotland and able to take off and travel to special places and to see friends. But we have to wait. I feel very selfish complaining when I have so much to be grateful for, but this waiting phase feels sort of endless.

At the moment, returning home seems rather bittersweet. But, like many things that happen in life, you adapt, and that's what we're trying to do.

We're waiting, but we live in hope for better times ahead.