New to CLL and worried about upcoming holiday.

[Thinkimjob]

Hello! I have only just been diagnosed after a routine blood test. Apparently, things are very early and I just need to wait. I am terrified and really upset. About to go on holiday, and have been told that is fine. We are going to Iceland. My worry is, what might go wrong because of the CLL? Do I need to take anything with me "in case"? How do I stop crying?

[Peggy4]

Hello Thinkimjob. Oh how I wish I could fast forward you a few months. Please please believe me, you will feel better than you do right now- MUCH!

These fitst few months are not going to be easy while you cone to terms with it all.I Should know-this time last year my feelings were the same.

You are so in the right place! Please listen, you do not have to try to understand it all now- you have time. Here there are people who will listen, understand and KNOW how you feel because we have all been there. Yes, you are going to have to live with this but as my consultant said, the key word is LIVE.

I'm not going to tell you not to worry. That would be pointless. Try if you canto calm yourself, there is plenty of time to get to grips with all of this and loads of people here willing to help.

Ask questions, no matter how silly you feel they are. Someone will be able to guide you in the right direction as they did me.

Keep us updated

Peggy

[kitchengardener2 in reply to Peggy4]

I was diagnosed in Nov 2018. Like so many, it is the fear of the unknown. I cried so much, it was the word cancer! However, I am still watching and waiting, white have increased but I have wonderful medical support. I was advised to LIVE and that is what intend to do. We take as many holidays as we can, checking with my consultant before each long trip. Understanding that we cannot have live vaccine so cannot go anywhere which needs that. Go away and enjoy your holiday. Not sure where you live but are you close to any support groups? I am in the process of setting up such a group in east Yorkshire. Please take care, best wishes for the new year.

[Cllcanada Top Poster CURE Hero]

I think a trip to Iceland would be wonderful, and help take your mind off things... I might suggest you get travel insurance, and be certain all your vaccinations are up to date.

Hope you have a great trip! 😀

~chris

[Loves2walk]

Hello and welcome to a site I bet you didn't know existed until recently. I'm so sorry you had to find it though.

My husband was diagnosed exactly like you, just 3 short months ago, right out of the blue. We've been where you are, thought we'd never smile a sincere smile again, never have a good old belly laugh, never stop crying, and I can tell you that those days WILL come back! I promise you.

We too had a trip planned, worried about the same things. It was our best medicine. There's a big beautiful world out there and if I can find one positive from this whole CLL "stuff", it's that we really truly appreciate every moment of every day.

I can say with all sincerity, that finding this site and these people was the best Google search I ever did! It helped me out of that deep dark place we find ourselves in after those awful initials are verbalized by the doctor.

I can't wait to hear all about Iceland!! Bon voyage!

[debs24]

Hi Thinkimjob

You said that you are in the early stages of your diagnosis so, apart from the obvious emotional impact (which you will come to terms with over time...honest!🙂) it's unlikely that much will happen physically in the very near future - you should definitely go on your holidays!🌞

I was diagnosed almost 2 years ago (my white cells were high and have continued to increase ever since!) but, since my diagnosis I've been to California, Austria, Hawaii (twice), Wales, France, Florida (twice) and several long weekends here in the UK. We've just cone back from 2 more mad busy weeks in Florida and I have trips planned this year to Austria (again), Barcelona and more weekend trips. I'm already looking ahead to early 2017 when I'll be no doubt searching for some sunshine again!🌞

What I'm trying to say is that you should try not to let the "thought" of CLL stop you from doing anything! You've had wise advice on getting some vaccinations and travel insurance, but, other that, just go for it!

The medical experts are continually working on developing new and exciting treatments for CLL. Let them worry about the detail. You've a life to live - get out there and enjoy Iceland! 🙂

Be well

Debs

[nvp815]

You have already gotten some great advice and I agree with everything you have been told above. A vacation may in fact prove to be the best "medicine" you could get right now. I remember those crying days oh so well. I was diagnosed in November 2013 and cried so hard I couldn't breathe. Then I found this site and the wonderful people here. They restored my hope - the greatest gift I have ever been given. I promise you it will get easier to cope. Unlike other cancers, CLL gives us time to research, learn about our disease and if and when needed plenty of opportunity to choose the right treatment. I look forward to hearing about your trip. Wishing you a safe and memorable vacation.

Warm regards,

Nan

[CLLCalifornia-USA]

Unfortunately there is no good time to hear such a devestating diagnosis. I received my diagnosis three days before a Mediterranean two week cruise and a visit with my son who was living in Florence, Italy. I decided to live and enjoy it. That was nine years ago. The trip helped prove to me that life will go on. I made sure that every minute of the trip was memorable. Keep a journal. I reread some of my entries during chemotherapy and it pushed me to fight harder. There is so much to enjoy. I've never been to Iceland and can't wait to hear all about it. Don't forget to share an occasion picture. Kindest regards, Sally

[wroxham-gb]

Hi there, would just like to say welcome. Some good responses above for you to read.

Go, enjoy your holiday.

Come back with any questions or queries you may have, well all do our best to help you.

Let us know how the holiday goes.

Sue

[Oleboyredw-uk]

Hi Thinkimjob,

Same advice as Ialways say, first take time and try not to panic. In general CLL is a slow mover so focus on getting on with life.

Make sure you have holiday insurance in place and you should notify them of the diagnosis. Expect a lot of questions from them but try notto get phased by it. Bif they quote you a high price check elsewhere (several on here, me included gave found world first to be good).

My biggest concern is risk of infection so watch out for people coughing and sneezing and politely step away. Check the travel advisory for where you are going to see if you need any jabs and get up to date - unless they are live vaccines which we cannot have.

Keep a hand gel with you for use before eating, in restaurants I use it if I have to go to the loo when I walk back to the table.

I gave travelled quite a bit since diagnosis and FCR treatment and to date only picked up two colds (just packing to return home from France - boo).

Have a great trip to Iceland, a place I'd love to go to but haven't got to ..... Yet.

Travel safe, rob

[everlife]

Have a great holiday and good luck.

[MsLockYourPosts Passed Volunteer]

I have always had issues with infections, so now when I travel my doctor sends me off with an antibiotic (just in case) and a good cough syrup. My wonderful pharmacist splits it into travel sized bottles for me. I agree about travel insurance as well.

[BeckyLUSA in reply to MsLockYourPosts]

I agree with pkenn, my doctor always gives me an antibiotic to take with me when I leave the country. Airplanes are germs places. You will be fine and travel is great medicine!!!

[Newdawn Administrator]

Hi Thinkimjob,

You've had some wonderful advice which I wholeheartedly agree with.

Reading your post I was struck with the feeling that is not so much the holiday you're afraid of but this whole diagnosis and the sheer horror and shock of receiving it. Taking a new and unknown condition on holiday is scary especially in the early days when it feels raw.

I've been diagnosed 4 yrs and can remember vividly the overwhelming feeling of vulnerability at the beginning. I think I almost expected to look in the mirror and see some sign of it on my face! But the truth is this does travel and it shouldn't restrict your plans at this stage. We can pick up infections anywhere not just on planes and Iceland has such clear, bracing air that it will be the absolute tonic you need. I'm not going to pretend it will leave your mind for a minute because it doesn't. We adapt and we steady our fears but the condition is rarely a heartbeat away from our thoughts. But, as time passes and you start to see that this is a liveable with, do'able condition, it won't seem like such an invader. It will become part of you that you adapt to having and don't fear so much.

In terms of what can go wrong with the CLL whilst you're away. Well it's not suddenly going to require treatment because it's chronic and doesn't work that way. It sounds like very early stages for you and you may not even have significantly reduced immunity at this stage. Probably the worst thing that could happen is an infection but you could get one anyway. No reason at this stage that it should present more severe problems for you.

Make sure you've had your flu and pneumonia jabs. Take sensible but not wildly excessive hygiene precautions and you could ask your doctor for a course of antibiotics 'just in case' but you may find he doesn't yet see the need (obviously I'm not aware of your levels). And good travel insurance as others have said. It's not so difficult to get in the early, untreated stages.

You're having a tough time emotionally at the moment and a holiday could be what you need. I so wish you could leave the CLL at home but it can travel well and not cause you a moment's problem!

Warm best wishes,

Newdawn

[Thinkimjob]

Thank you so much for the replies. I think it helps immensely to be able to share with others in a similar position. Thank you wholeheartedly.

I have found this a much, much tougher shock than my other problem, which is multiple sclerosis. The CLL was found during a routine blood test for my ms injections. Somehow I can get my head round ms, but a blood cancer with lymphocytes increasing exponentially within me I find so, so difficult. A physical problem can be coped with, but a hidden one, and not knowing how bad it is at any moment in time I can not seem to fathom.

Many, many thanks for your thoughts.

[AussieNeil Administrator in reply to Thinkimjob]

CLL and multiple sclerosis treatment share some common drugs. Please keep that in mind to raise when discussing treatment with your respective specialists.

Neil

[Seven6]

Hi

As usual lots of good advice.

There has been emphasis on CLL being a slow progressing illness and that the immediate anxiety and worries do ease.

I was diagnosed 2 years ago. I was due to go on holiday, a gruelling and lengthy journey with a lot of family emotions at the end of the journey, which I did not feel up to. I was able to claim a refund on my insurance with the help of an understanding GP. I mention this to normalise how you are feeling. In hindsight I would have been fine physically but for me not emotionally. Today I would be up for the challenge.

A holiday may give you space to be yourself and Iceland sounds amazing.

Whatever you do, do what is right for you and those around you.

All the best

Seven6

[Hidden]

i hope you had a wonderful time! i had planned a trip to Spain back in August and then in October was diagnosed. i debated on whether to go - but my family encouraged me to go. fortunately a wonderful friend will accompany me in February *which was not in the original plan when i booked it* and neither did we both know what was to come healthwise. we can't stop living because of this disease. upward and onward i say!

[Spike27]

I too was worried when I was first diagnosed about 3 years ago as I had a holiday in Greece already booked for a month later. Despite the initial Consultant being very doom laden about the whole thing which worried me, he seemed to be a one off as ever since then, everybody I've dealt with have been enthusiastic, positive and encouraging. We went on said holiday without a single issue and have been on about 20 foreign trips since (work and pleasure) and again, not had a problem. You obviously need to take your meds with you if you are on treatment, plus I always have some antibiotics on hand just in case of an infection (not used them yet fortunately).

Otherwise, just go ahead and enjoy yourself, and use these for your holiday insurance as they are brilliant, great value and truly understand CLL!

healthunlocked.com/cllsuppo...

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