Living For Lamingtons: Waiting
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.
Marjorie Smith is a multiple myeloma patient and columnist here at The Myeloma Beacon. Her column is published once a month. You can view a list of her columns here.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
Dear Marjorie,
So sorry to hear of Graham's diagnosis. It does indeed seem so unfair after all both of you have been through. And it's not complaining to feel that way, nor does it take away the gratitude you feel for the good care you have had. It is just truly unfair. I send my prayers for your shared peace and comfort as you deal with it.
Rebecca
Marjorie, I hope that the waiting periods lessen as time goes on and you get through the most time consuming parts of treatment, both for your husband and yourself. It is time consuming being a patient, even if everything is going fairly well. With our busy family life, Dilip's busy career, and also having medical appointments of one type or the other, we just look at our calendar, try to find a clear stretch of time, even for just a week, and plan a break when we need it. Even if it were just for a long weekend, that could be refreshing for you.
I have heard that the highlands of Scotland are very beautiful; it's on my bucket list to go there someday, since I have Scottish heritage on my father's side (from the Isle of Lewis, but the family emigrated here in the 1830's). When I was a child, some of the elders in the family still spoke in Gaelic sometimes, or so it seems to me. That is why I took up highland dancing and bagpiping when I was a girl. My maternal grandmother lived in Glasgow for a time and sent me a whole highland outfit to wear while performing.
So I guess I am trying to say that even if you are close to home, there must be lovely places to visit nearby. Wishing you both all the best with your health problems, and hopefully those will clear up too, and give you more free time.
Praying that all goes well with your husband's treatment. What a blow that is to have yet another cancer diagnosis. Thanks for sharing your heart.
Dear Rebecca, many thanks for your supportive comment and your good wishes. They are much appreciated by both Graham and me. I wish you good health.
Hi Nancy, I agree exactly with your comments about taking a break whenever possible. That's exactly what we have done and it is so refreshing to be away from the medical appointments. Scotland is a lovely country and I do hope you can visit some day. Highland dancing would also be a tonic! I'm smiling just thinking about it!
Hello Marjorie,
I'm sorry to hear about your husband's diagnosis. I used to live and work in Singapore for several years, joining my husband once the children had finished schooling. We left 3 years ago now, but we always managed to get back there 2-3 months a year for work (husband) and holiday (me)! We were due to fly out to Singapore Christmas Day 2015, but I was advised to cancel the holiday because my creatinine had risen. My back also hurt, but I just thought I had lifted something awkwardly at work. 6 weeks later I was admitted to hospital as an emergency in stage 2 renal failure and collapsed L3/4/5 - and a diagnosis of multiple myeloma (MRI). So, all control of the life as we knew it was lost, not just for me but for my husband too. He now became a carer for which he had no experience, but he did an excellent job. Myeloma happened at a time when all 3 children had jobs in all parts of the world and this was supposed to have been "our time." Unfortunately, this blip held us back for a year. We planned to go to Singapore last Christmas, but again we had to cancel when the consultant told me I had relapsed 5 months following stem cell transplantation. Emotions appeared I didn't know I had. So the holiday was cancelled. My consultant told me I had very aggressive myeloma and that I needed an allogeneic transplant. I sought a second opinion as I believed I had developed oligoclonal banding and believed this was not a relapse or progression. I had my 4th bone marrow biopsy New Year's Eve 2016 which showed MRD negative. A PET/CT showed no evidence of disease too. I did have oligoclonal banding which appears to come and go. Anyhow, we did manage to get back to Singapore in February / March this year, we even flew to Melbourne for a week for good measure and then we went away again for a month back to Singapore July-August. I always say it's like going home. We feel like we are on a rollercoaster most of the time, wondering what's going on in our bodies, waiting month by month for each blood test. I try to not worry anymore over the things which are outside my control, because worrying isn't going to change the end result. Enjoy each day and I pray that your husband's treatment goes well and that you soon both have more freedom to travel wherever you feel. Good wishes sent your way.
Dear Susan, many thanks for your good wishes and kind words. Kind regards and I wish you well.
Dear Singapore Susan (!), funny that our paths almost crossed in Singapore. I'm so very sorry to hear of your myeloma diagnosis, your suffering and the cancelled trips. I can empathise with the feelings, which you describe, of loss of control and the way in which your husband had to suddenly care for you. Being told that you had relapsed and had an aggressive myeloma must have been unbelievably awful. I don't know about oligoclonal banding but if the bone marrow biopsy was clear surely that must show that you have not relapsed. It was great to hear that you finally made it to Singapore and added Australia! I hope you had good holidays. You are correct it is best to try to cherish each day and to try not to worry. It easy to write that mantra but I don't always succeed in following it! I wish you well and thank you so much for your good wishes.
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