[emmasue123Participant]

I know it varies from patient to patient but I’d be grateful for any views/experiences that are relevant. My husband was diagnosed early and has just had his SCT and we are on day 43. He will have an MRI and another bone marrow biopsy mid December and then the consultant will tell us, rather dramatically on New Years Eve, how many cancer cells are left and roughly how long he expects his remission to be.He seems to have responded well to treatment and is recovering well but I don’t know if that links with how good or how long the remission will be.

My question is what does remission look like? He will be on a maintenance drug from March onwards. Will we have to continue to be watchful for infection? Is he likely to continue to feel fatigued – at the moment he is wanting to plan lots of travel and I just don’t know how realistic any of that is with cancer. The awful thing for us too is that friends and family seem to think that once it’s in remission, it is gone but of course we know that is not the case. Grateful for any insights into how you’ve handled remission and your experience of it and day-to-day life and travelling abroad etc.

Thank you so much.

[gcoulterParticipant]

Once my wife got beyond the first few months after SCT, we travelled. SCT in September, winter sun in January, then 3 weeks around Italy/Switzerland/Austria, New York in the Autumn, Iceland and Christmas markets in Vienna and Prague in December. I’m sure there was something else but as you’ll see it spurred us on to see a bit more of the world.

[rabbitParticipant]

Hi emmasue123,

I am in remission and have been travelling a lot since going into remission, but I haven’t had a transplant.

Start Locally?

I live in Southern England, so my first bit of travelling was around Scotland. Still able to use the NHS, less need for travel insurance (see below), no language barrier. It also gave me more confidence as a traveller with MM (albeit in remission). Fatigue was a real problem at this stage, but a city break using a tour bus doesn’t require being on one’s feet for long.

Travel Insurance

This is a must, as always outside the UK, but the premium will be high for your husband. I suggest some shopping around. Don’t forget the free Global Health Insurance Card for emergency medical treatment in the EU and one or two other territories.

Medicines etc

There are countries (such as UAE) where bringing in medicines comes with rules. Please check first before bringing in chemo.

Elsewhere on this forum I have suggested CBD oil to help with lack of sleep. It is, however, illegal to bring into many countries (Sweden and Morocco come to mind) so again please check first.

Company

If your husband has any plans to go solo, please discourage him. Fatigue and infection are much easier to deal with when you have a companion.

My Experiences

My fatigue has gradually reduced over time. In the earliest trips, fatigue held me back but I planned accordingly. It is still there in a mild form now, after 18 months of remission, but I just allow for a bit of time to rest, whether on a beach, sitting and watching the world go by, or going to a theatre or cinema (maybe wearing a mask).

In that time I have been to: Scotland, Denmark/Sweden, Morocco, Cyprus, Southern Spain, Portugal and New York.
Yes, I have spent a bit, but I have decided to start using my savings/pension pots rather than just look at them (I am aware, though, that I am financially fortunate).

Food Hygiene and Healthcare

Both of these vary a lot around the world. Each time, before booking, I knew or checked that there were good hospitals where I was going (if nothing else I had peace of mind). With hindsight, I should have checked likewise on food hygiene: coming back from Morocco with gastroenteritis was… not pleasant.

Regards
Rabbit

[gcoulterParticipant]

Hi

If you’re not already a member there is a really good Facebook page with loads of helpful members. You’ll always find someone in the same position.

Also if he is under 60, there’s a great WhatsApp group either or both of you can join. Contact Myeloma.

Finally re insurance it may not be as expensive as you think really depends on his age. We’ve travelled loads over 10 years and never paid more than £200 annually for worldwide insurance.

[Author]

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