Follicular lymphoma

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Foreign travel whilst on maintenance e are

Jenko1979
Posted by

hi all,

i have been asked by my work to go to India and China in April and I’m not sure what to do.

i understand that in order to travel to these countries I would need many vaccinations and obviously I have been told by my consultant that I must not have any live vaccines.

there are non-live versions of these but ultimately these won’t be as effective.

im nervous about travelling to these countries (particularly india) only 8 weeks after finishing chemo and also potentially not being vaccinated to the full level that one would like. 

Im worried that if I did pick up anything then because of our compromised immune system it could prove serious and/or delay any of my further planned maintenance treatment.

im also concerned about telling my boss that I can’t go on the trips as effectively I am not able to perform my job role as well as others and I worry about the impact this might have for my future career development. Effectively this would rule me out of any travel like this for over 2 years.

has anyone had any experience with travelling to Asia , specifically China or India during chemo and/or maintenance treatment?

my consultant said it’s ok providing I stay in a nice hotel and drink bottled water yet the gp who deals with vaccinations said if it were her she would not go, so I’m also a bit split there.

would be interested to know your thoughts.

Paul 

Thehighlander
Posted by

Ah Paul, this is not going to be an easy one to get a clear answer for let alone real first hand experience.

I had a total ban on going abroad including all flights for a good two years - but that was following my Stem Cell Transplant. Even now I can never have live vacations so some places in the world are still off my list.

You will be open to everything that is going, even in the best hotels and restaurants as you just can not control everything and then you have the long flights.

I think you would need to have a ‘fit to travel’ letter from your medical team as your employers would have to ensure that they have you completely covered with medical insurance including repatriation. If you can not get a ‘fit to travel’ letter than your employer my have to declare this to their insurer to ensure you are covered.......and make sure you get a copy of all the policy details so you know you are covered.

This is hard for you,  you could call our Help line and talk with the folks on work advice team. Check the long link at the bottom to see when all the services are available.

This may be a gut reaction decision and you have to take all the best precautions you can.

Macmillan Support Line Services on 0808 808 00 00

www.macmillan.org.uk/.../macmillan-support-line.html

Mike - Thehighlander

Some journeys take us far from home...... but some adventures lead us to our destiny  - CS Lewis

johnr
Posted by

Hi Paul, a few challenges there, so a number of issues to address, the first barrier that the company need to overcome is providing you with medical cover if and when you should work abroad and I would assume any company policy may not cover you without your history being declared. Second you are still in treatment even though its maintenance treatment so perhaps a meeting with occupational health to report on a) whether its appropriate and b) if it is what adjustments would need to be made by the company to ensure your wellbeing.

Your consultant needs to mark your records fit to travel and if they don't then work should not be sending you abroad.

Finally you are covered by the disability discrimination act so work are obliged to make appropriate adjustments unless they can make the case adjustments are not viable.

Have you sat down and had a discussion and explained your concerns and the issues re vaccinations as your boss may be understanding if things are fully explained as part of what I mention above is the company should have a risk assessment for your return to work and that should be the starting point, however I guess smaller employers will not go down the road.

The are advisors that Mac have that I am sure mike can point you in the right direction to talk to them and get their advice.

John 

we all know this is a roller coaster ride, where we ride blind, never knowing where the highs and lows are
Jenko1979
Posted by

Hi both,

thanks for your replies. The company I work for is a very big company so I’m hoping that I can get some support from HR and occupational health etc if my gp says I should not travel.

my boss doesn’t really seem to understand my situation properly and is US based so they all have different policies over there anyway.

im just a little annoyed to have been put in this situation really so soon after finishing chemo, but I am stil on maintenance as you say.

it may be that they do not want my circumstances to come in the way of career opportunities etc so maybe I should be thankful they have asked.

anyway, I did email our medical  insurance people on Friday and they are going to get back to me, so it may well be they force the decision not to go for me.

i am also meeting the gp next week to discuss vaccination options and risks etc in more depth.

regards

Paul 

Jellie0303
Posted by

Hi Paul,

I have just come back from a long trip abroad - 7 weeks in Thailand.  I had my last round of RCHOP mid November, and went away in mid January, immediately after my first maintenance treatment. Obviously my trip was my decision, and actually I decided to go to help me recuperate with fresh fruit and veg and I lived at a yoga retreat for most of that time.  Suffice to say that travel that is not due to work is very different from travelling for work.  For example, I suffer from muscle/joint pain that means I need many adjustments to do yoga, and I need more rest than I’ve ever needed before e.g. 2-3 hours of exercise a day are okay when combined with 8-9 hours sleep (albeit that the sleep is disturbed).

As a yogi, I considered travel to India but to be honest, once I was diagnosed with Stage 4 Follicular lymphoma, I dismissed that destination altogether for my recuperation. Depending on where you would be expected to travel to in China, that destination might also not be ideal i.e. I think Shanghai and Beijing could be okay.  

I have not gone back to work yet, and I used to be required to travel a lot with work (lawyer).  I don’t think that I would be very comfortable with working and travelling right now because whether we like it or not (and no, we don’t like it), there are residual effects to the treatment in terms of stamina as well as your body being slower, at least mine is. 

So, I would just say that it may be that the insurance takes this decision out of your hands, but if it doesn’t you should not hesitate in saying no to the trip.  Fear of infection is a serious thing for us.  You will have a compromised immune system and that will be more at risk, from the environment as well as from being more tired/exhausted from working/travelling etc.  I don’t know a single person who has travelled to India who has not got sick i.e. vomiting/diarrhoea, from yogis to senior execs, so it hasn’t mattered if they are on a budget or staying at the best hotel in town.  That’s okay for other folks because it can be short lived but would not be such a small matter for the likes of us. 

I just had an appointment with my consultant yesterday, and he said that that the only thing I could do during the 2 years maintenance treatment was to stay healthy and avoid infection.  No body can make this decision for you, and I understand the desire to still progress your career and get life back to normal.  I hope my post may help you decide what to do. 

Best,

Theo

Jenko1979
Posted by

Hi Theo,

thanks for your reply, I really appreciate it.

I have definitely decided I won’t travel to India and already told my boss.

I have an appointment with the GP on Friday to discuss the China trip, but my gut feeling is to not do that one either.

my work have confirmed I am covered by their insurance, but they did also say that I should not feel pressured to travel.

I think I’ve decided to not worry too much about my career now anyway - life is too short to consume yourself with work anyway. I’m only 40, but I am hoping to drop down to 4 day weeks in September to enjoy what I’m calling “part retirement”, lol

Thanks

Paul

Paul