Living For Lamingtons: What Are We Waiting For?
I’m not sure if my husband Graham and I had any definite plans for how to spend our first year post retirement.
In the pre-myeloma days, I think we often talked about traveling more and spending more time together doing the things we love to do. My multiple myeloma diagnosis turned everything upside down for a while. Our plans shifted to much more day-to-day things, such as doctor visits, management of treatment side effects, and the hope of better health.
As I’ve said before, I was lucky and recovered well from my stem cell transplant and went into remission. Even with the likelihood of better times ahead, our plans to travel at that point were quite modest.
The biggest change since my stem cell transplant in 2015 was when we returned to our home in Scotland last year after many years of living in southeast Asia. Once we were home, life took on a different tune, and we enjoyed being back in Scotland (apart from the weather!). Graham continued to do some freelance work for the company that had employed him in Asia, and we both spent happy times catching up friends and family.
A few months ago, Graham was encouraged to take up his previous job again and we considered returning to live in Singapore. It was a tempting offer in many ways. Graham would have a steady income again, I’d be able to return to the doctors and the health care system that had been so good for me, and it would be nice and warm! However, there would also be downsides associated with such a move. Rather than spending more time together, we’d return to a life where Graham was working long hours and was often away from home.
We chatted and ruminated over the pros and cons of the potential move. After much deliberation, Graham said that he felt that this move would rather put our life on hold again. And then he asked me: “What were we waiting for?” He was referring to our dream of traveling more and spending more time together.
Well, I’m not sure, I thought. I certainly don’t want to feel that I’m waiting for relapse! I want to live my life to the full and enjoy every day that I can. Living life to the full for me includes traveling.
Traveling for me is not so easy as it used to be, but maybe now, right now, is the time to go back to our previous pre-myeloma plans, I thought.
So Graham turned the job offer down, and we got back to thinking more about what we wanted to do at this particular time of our lives. Spending time together doing the things we love to do sounded like a great starting point to both of us!
Over the last year, we have started to take vacations again. Getting travel insurance was a challenge, but we managed to find a policy suitable for someone with multiple myeloma. Even with the insurance, I find myself rather nervously checking holiday cancellation policies as I’ve certainly lost confidence in my own health.
But with our new 'what are we waiting for' mantra, we decided to be more ambitious and return to the type of vacation we had in the past, since it is definitely something we love to do together.
So our next trip will be a walking safari in northern Kenya.
I can’t really begin to describe the excitement and joy these types of trips have brought us in the past. Being far into the wilderness, immersed in nature, and challenged by the environment is just as good as it gets as far as Graham and I are concerned. We both studied zoology at university, and the natural world is infinitely interesting to us.
We’ve not really dared to dream of a trip such as this since my myeloma diagnosis. Looking back to my transplant days in Singapore, I think of how just recovering enough to have a coffee and a lamington was my aim at the time. Our recent, modest trips and vacations have been great, and we’ve appreciated them so much more, as they have seemed to signify progress in the journey back to health and a more normal life.
I’m so much stronger now, we have the time, we still have the passion for wildlife, so 'what on earth are we waiting for?'
The trip is all booked, and I can feel the excitement bubbling up inside me. I’m scared as well. My body is not as reliable as it was, and I’m hoping so much that it will behave!
Wish me luck!
Editor's Note – Beacon readers who know how English is spoken on the eastern side of the Atlantic are probably wondering if Marjorie really used the word "vacation" in her initial draft of this article. Not surprisingly, she did not; she used "holiday," as most people in Scotland would. We have used "vacation" instead of "holiday," however, because the meaning of "vacation" is understood by most of our readers, even those unlikely to use the word in day-to-day conversation.
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 .
Good for you!! I love to travel, too, and my husband and I are currently saving up for another big trip. We took one for our 20th wedding anniversary, about 2 1/2 years after my diagnosis and it was fantastic. Having something to look forward to is also good for our health, I think. It gives us yet another purpose to keep on going. I hope you and your husband have an incredible time on your walking safari!!
Good luck Marjorie on your African safari vacation (holiday). I am so glad that you are venturing out and not “waiting” for relapse. We have the same attitude about trying to live life to the fullest and do those things in retirement that we had planned. Unlike in our younger years, we buy travel insurance for every trip and have had to use it a couple of times. It is well worth the extra expense. We also take a lot of precautions when we travel. On many flights we wear masks, we avoid crowded places, especially elevators, and we have stopped hugging and shaking hands except for our immediate family, and only if they are well. My husband is still on maintenance therapy with Revlimid and a once a month infusion of elotuzumab and dexamethasone. This keeps his white blood count low and puts him at risk of infection. We recently took a vacation that included a cruise around the British Isles. I am happy to say that all of our precautions paid off and for the first time my husband was well for the entire trip.
Dear Susan, thanks so much for your comment. I am glad that you had such a great trip and I hope you can plan some more adventures!
Hi Patty, thanks for all your comments and travel tips! I will buy some masks today before we leave. I am so pleased to hear about your recent vacation and even better that your husband was well for the entire trip. Good luck and best wishes to you both.
Hello Marjorie, thanks for the encouraging column about travelling! My husband and I try to travel about twice a year, and I do pick out flights, accommodations, etc. that can be cancelled if necessary. I have cancelled out of a couple of needlework seminars in the last two years, and only lost a deposit. I had to sign up over six months in advance, and things can change in that amount of time.
I just wanted to ask you, as well as having travel insurance, have you checked with your oncologist and also a travel health clinic as to what precautions you should take in travelling to Kenya? I took a quick look on the Internet and noticed that some vaccinations are recommended, as well as anti-malarial medications and other. Since you already have lived in tropical Singapore, you are probably up to speed on that. Some vaccinations are 'live' and thus probably as a myeloma patient you would be advised not to take them. So I just wondered what you have found out about that.
Have a wonderful time on the walking tour!
Dear Nancy, thanks for your response and the good points which you raise. We have chosen to go to an area that is high in altitude and in the north of Kenya - it has no malarial mosquitoes! It will be cold at night but that suits us fine. We have both had yellow fever vaccinations in the past but, as you say, this is a live vaccine so we have not investigated renewing it. There are other recommendations for vaccines but they are not mandatory so we are not having them. I hope to stay well!
What a great plan! I hope that you have a wonderful trip and that you make memories that you'll always cherish!
Thank you for an uplifting colum. I received my diagnosis 9 days ago and start VTD in 2 weeks time. Fortunately, my GP was on the ball and he found it early (no bone damage or outward signs). Of course I'm consuming as much information as I can find and I just wanted to say that your very positive story has helped me a lot, so thank you again.
I shall bookmark this site and no doubt visit many times as my new life "adventure" unfolds.
Thank you for this wonderful story about hope. It brought tears to my eyes when I read it to my husband. It resonates so well with us. My husband, 57, was diagnosed on May 14, totally unexpected as we have been both healthy and active and avid travelers. We worked so hard all our careers, luckily traveled, and were looking forward to many more new adventures. We feel like we have been living in a terrible nightmare the last month. Each week gets a little easier.
Luckily, his GP noticed a lower than usual red blood count at his annual check up a few months ago and only in April did my husband notice a mid back pain when we was trying out a golf club in a practice net. Thought he may have pulled a muscle, or didn’t stretch enough, after our Canadian winter.
Still nagging him and waiting for the MRI results. X-rays were fine. Mostly just a few degenerated disks, age related.
He started CyBorD treatment 2 weeks ago and we are waiting for the final biopsy results in a few weeks re: genetics of the cancer. Hoping it is not aggressive.
Since his diagnosis, we have had to cancel our 35th wedding anniversary trip to Italy this September with our children, which I had been planing for a year; his boys golf trip to the British Open in July; and a 6-week trip in winter 2019 to Australia. Retired only two years now, but he still does a bit of part-time consulting work for intellectual stimulation, which I think will be a good thing as we move forward.
Your article has given us hope if we get though the planned 4-6 month CyBorD then stem cell transplant maybe next April we can plan a last-minute trip somewhere with a target goal of Australia 2020. We can only dream. If not that far distance, maybe somewhere warm during the winter but closer to fly home.
Naturally we will need to understand our travel insurance policy restrictions better.
We need to hang onto hope. We will now forever have to be spontaneous. Not an easy task, but we have no choice but to dream.
Our clinical team nurse gave us wise first-time advice: Don’t let this disease take over your life. Words to now live by.
Have a wonderful trip and adventure!
Dear Tabitha - Many thanks indeed. We’ve just returned to Nairobi with stories to tell!
Hi Kevin - I’m sorry to hear about your diagnosis. I hope that your treatment goes as well as it possibly can and that you get into a good remission. It’s very nice to hear that my column was helpful to you and that gives me encouragement to continue writing. Thanks.
Dear Nancy - Thank you very much for all your comments. I’m so sorry to hear your news and all that it means to you both. This is such a tough diagnosis but, as you say, you have hope to help carry you forward. I think it helps to have smaller goals that can be achieved and to hold onto happier times. I send you both my very best wishes for the months ahead. We’ve just completed our walking safari, something which I didn’t dare to dream of a couple of years ago. Wishing you the very best of luck.
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