Living as normal a life as possible

3D satellite image of Japan and Korea.

Trevor Hay tells of  his travels with cancer.

The haematologist looked a little surprised when my first question after he told me I had multiple myeloma, cancer of the blood plasma, was: “Will I be able to go on the holiday to Japan that I’ve booked for next year?”

He thought about it and then said: “No. You’ll either be in treatment or recovering from it with a severely compromised immune system.” 

As it turned out I was in hospital having undergone stem cell transplant, an unpleasant process that not only takes out your immune system, but your hair.

I’ve always taken out travel insurance but never had to make a claim before and I hope I never have to again. I assumed mine was an open-and-shut case but the reams of paperwork still took an inordinate amount of time and effort. Fortunately the travel agent I had used to book my walking tour of Japan responded promptly to my requests for copies of all the relevant documents for what had been a hefty non-refundable deposit. 

Singapore Airlines was also quick to provide receipts for cancellation fees, even though the online transactions don’t usually generate them. 

It was a great relief to see the insurance payout drop into my bank account.

Once out of hospital I was keen to get back on the road. 

The haematologist was even keener to ensure I was going to be fit enough to cope with the rigours of travel. Nothing for three months and then only domestic; six months to countries with an adequate health system. I was still keen to get to Japan, albeit on a less strenuous tour than I had previously envisaged.

This time I booked directly with the travel company and was pleasantly surprised with the sympathetic support I received when I explained my medical situation. I had to take out travel insurance but I now have one of those “existing medical conditions” which requires special cover. 

Using the online application forms, I discovered all the companies have a special set of extra questions for myeloma sufferers. The surprising thing was some companies would not insure at all (including my credit card company) while the range of extra premiums was quite large.

One of the ways myeloma manifests itself is by “eating” bones, and it has had a fair nibble at my vertebrae. 

Shortly after diagnosis I was hospitalised for a fortnight, barely able to move due to excruciating back pain.

 As a result I am now on a diet of daily opioid-based painkillers. I needed permission to take them to Japan. I had to provide a doctor’s letter and copies of prescriptions but I was very pleased to receive my import and export licences from the Japanese authorities.

One of the effects of chemotherapy is the loss of protection from all previous vaccinations — I was effectively a newborn. 

The re-vaccination schedule runs over two years and starts with seven jabs. I had them in one session a month before my trip. I came out of the doctor’s feeling like a pincushion but the bad reaction I feared did not eventuate.

Aircraft are infamous as places to pick up germs so I took great care to clean all the hard surfaces around my seat with antiseptic wipes. I was also very aware of anybody near me who coughed or sneezed. I had thought of travelling with a face mask but research revealed they are of doubtful use and hand hygiene is much more important.

The flights were uneventful but, on arrival in Tokyo, the border control officer noticed I had ticked the box asking about medicines and I was whisked out to a back room. After 10 minutes all my paperwork was returned and I was free to go. I went through the red customs channel and gave my import licence to the officer, who looked at it, scratched his head and waved me through. I got the feeling I need not have bothered trying to do the right thing.

Much to my dismay, the monorail from the airport to the city was crowded and I had to hold on by strap strap-hang in a wedge of people. 

I noticed a few of the locals wore face masks and I leant away from any cough and held my breath.

I had a couple of free days in Tokyo and, using public transport, visiting some of the sights including the Ginza, the National Museum and Senso-ji temple — all very busy places. 

I also did an evening dinner tour and was amazed to learn most of my dining companions worked for an American company engaged in CAR-T therapy, a revolutionary new blood cancer treatment that modifies a patient’s blood in a way that produces chemicals that kill cancer cells. 

It is still being developed and each treatment costs hundreds of thousands of dollars. 

Despite the Federal Health Minister’s enthusiasm for it, I don’t see it becoming readily available anytime soon.

I decided to tell my fellow tour group members of my situation early in the piece. It transpired one of the group had lost his first wife to breast cancer, his current wife had nursed cancer patients, and the American couple both had back problems worse than mine. 

The tour leader was a liver cancer survivor. The tour itself was uneventful, despite staying in traditional inns, eating raw fish, sleeping on futons on the floor and using communal hot springs baths.

I flew home from Hiroshima. 

The customs man waved aside my attempt to give him my drug export licence and I didn’t bother wiping down my aircraft seats. It was a very relieved cancer patient who arrived home none the worse for wear.

Myeloma is a very individual cancer. Some succumb very soon after diagnosis and others live for 20 years or more. 

The trick is to live as normal a life as possible while you can. 

I intend to travel for as long as I am able.


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