Hello,
After my diagnosis of follicular lymphoma and smouldering myeloma in October 2019, successful treatment and all the awfulness that followed, I have only been on short carefully picked holidays in the uk.
I have never had a conversation with anyone about my cancer risks and going abroad because it wasn’t an option due to covid. Me and my family would love some relaxing sun, especially my 13 year old daughter.
Do people go abroad? What extra precautions do people take if any? Are people venturing abroad even with covid risks?
Because I don’t know the risks or even if there are any unmanageable ones, I catastrophize and feel a bit like I’d catch every single bug going ending up in a foreign hospital. Even though that doesn’t happen here and I work in a school. I even got a chest infection at Christmas (like most other people) and responded with 1 course of antibiotics.
Recent hospital appointment was fine. Bloods all ok and I’m not having any treatment currently.
Thanks for reading
I think you have to weigh up risks and benefits to you and for you. Always take advice from your team.
I have NHL it was always a bit of a joke with my consultant as it was the question we asked every appointment when can we travel as it’s something we love to do.
If you are going to be more worried about the travel it might spoil your enjoyment and you would be as well enjoying the wonders of the UK. We had some fantastic trips during my treatment time around the UK and then of course during covid when no one could fly.
I flew to Barcelona soon after restrictions were lifted and found it perfectly safe . I have had covid twice but both times caught whilst going about my usual work and life in the UK.
I will always wear a mask to fly now anyway as does my husband and as long as we choose some where not in the middle of no where there is no reason why the treatment should I be unwell in Europe would not equal any I might need in the UK. I found at times when we travelled in the Uk such as remote places in Cornwall and Devon we were longer away from our home (and any large hospital )7 hours by car than when we visit Amsterdam which is only 40 minutes on a plane. We do always check we have proper insurance. We have travelled regularly and love every minute . Hope this helps:)
Ps we have just come back from Bruges in December, yesterday the Lake District- we are off to Leeds in February, Amsterdam in March, York in April , Bristol in May , Croatia in June and Barcelona in August:) I think you can see I like to travel 
Hi @Limadi
Welcome to our forum. I am so pleased you have reached out and asked these questions as it is certainly a topic that many find themselves debating over. We appreciate how anxiety provoking this can be as there can be so many different factors to consider.
However, a good place to start is often with your consultant. Open up the conversation and ask any specific questions you may have with regards to wanting to travel and your current risk. It is likely you will be reassured by your team who can base your risk on your individual circumstances & medical background.
For context we certainly do have lots of contact with many people within the blood cancer community who are keen to travel and those who have already begun to do so again after the difficult years of covid restrictions.
Our blog here may be of help as it offers some practical tips to consider when travelling with blood cancer - Blood cancer and travel: your guide | Blood Cancer UK.
Also our webpage here, under the heading of ‘What if i want to travel or go abroad’ also offers some information around covid and what to think about before planning a trip- Antibody and antiviral treatments for people with blood cancer | Blood Cancer UK.
I hope some of this is helpful and I’m certain others within the forum will be able to offer you their own experiences or travel. However do not hesitate to contact our helpline should you wish to talk anything through- 0808 2080 888.
Best Wishes, Lauran
Hi @Limadi I can hardly add to what @Jules and @LauranBloodCancerUK have said but re-iterate perhaps check it out with your medical team.
Then the decision has to be weighed up for you personally so you are comfortable and really enjoy yourself.
Lastly get appropriate insurance cover.
Please keep us posted as I enjoy reading about other’s holiday experiences.
Hi @Limadi
First of all, I’m so glad you’re ok and back at work. And working in the next most infectious workplace in Britain I should think, after covid wards!
I won’t repeat the sensible advice above, but just to let you know, I debated this issue too. I had a stem cell transplant after acute myeloid leukaemia, which can leave one with a less than perfect immune system. However, after speaking to my consultants, I decided to go on holiday and have some warmth and sunshine. I had the added problem of now being more at risk to skin cancer following my treatment, so had to wear SPF50 at all times. I had my transplant in Jan 21 and went to the Canaries in July 22 for 3 weeks. I’d had about 5 covid jabs by then.
Masks were no longer mandatory, but I wore mine at the airport and on the plane, as did a few other people. Me and the family didn’t catch anything. And as you’re mostly outside on a beach holiday, I didn’t feel hugely at risk elsewhere. And the holiday was brilliant and illness-free.
I got good value insurance with Insurance With (online.) I was asked very in depth questions about my health, diagnosis and treatment and current status, which was reassuring - they understood my risk. The insurance covered 3 of us and was very comprehensive, and it cost less than £180 I think, despite my recent health history.
It really was worth it for me, taking the plunge. And it did my teenage son and my husband the world of good too, as it was a delicious blast of normality and relaxation and happiness, after all the worry of the last couple of years. We’ll be going somewhere again this year too, because we feel we need to live life now. Who knows what pandemics or illnesses the future holds?
But that’s me. I hope this helps you decide what’s right for you.
Best of luck (and I hope the answer is a hol!) X
As others have said, each of us have to figure out what we feel comfortable with (and with advice from our consultants based on our medical situations). I finished treatment Jan 2021 , still generally being very cautious not going in shops , supermarkets or restaurants but now happy to eat outside restaurants at quiet times. We did a couple of U.K. self catering cottage holidays in the U.K. in 2022 . This year we are doing a self drive holiday to the Loire , have booked a cabin on the ferry so we don’t have to sit with other passengers on the crossing and will mask up when in internal stairwells on the ferry. Staying in a cottage , so will do a mix of self catering and eating outside restaurants, and the French have drive through click and collect supermarkets. Lots of outdoor cycling and walking round chateau gardens. Have got my GHIC health card and travel insurance. I personally wouldn’t feel comfortable getting on a flight just yet as too many of my friends have caught Covid that way and had their holidays ruined by feeling ill . Also in my own risk assessment is that it’s only 3 hours drive back to the ferry if I were to get sick and/or France has good hospitals nearby with good general medical treatment or Covid treatments if required. (I wouldn’t go to a country/city with lack of medical facilities for example). So testing the water with this French trip. Good luck to you in whatever you decide is right for you and when it’s right for you.
I’d echo others who’ve said just take whatever precautions you’d take in Britain. I travel a lot again now and I think the airport/plane is where I get the most fretful, but in truth it’s barely different to using the Tube in London which I do plenty. Bear in mind that the nature of holidays is you tend to spend more time outdoors than you might at home so if anything it’s probably safer than your day-to-day life. Decent travel insurance will give you peace of mind regarding foreign medical treatment but you have to be quiet unlucky to catch some local bug anyway.
That said it’s also worth checking for any local outbreaks where you’re going. I wouldn’t suggest China any time soon…
Abroad is a big place and quite a difference between going to Antarctica and say France!As travel insurance will be very expensive for someone in your position if you do go away stick to the near parts of Europe and you could get back without too much probably is symptoms developed.As for COVID-19 well the chance of catching it is as high here as on holiday.
I am new to this Forum, don’t live in UK, live in Ireland. According to my Consultant there isn’t a support group in Irl for at least P Vera patients so he passed on this website to me.
I’m not sure if I’m hitting the right thread or not here on this Forum so forgive me if I’m messing up or breaking the continunity of questions & answers.
Was diagnosed in Autumn of 2021 following a
clot in my lung. I had nobody to turn to for support, in addition I was in denial & wanted to carry on daiy routine as well as I could. I’m retired so don’t have the work worry hanging over me like so many on here. I replied here as question is travel related. Quite frankly the least of my concerns is hopping on a flight be it long or short haul BUT as few friends have gone to Dubai, there at the moment, I simply wondered if a flight of that duration there & back should pose any problems due to dangers of clots occurring. Same thought occurred to me just driving about town to any of beaches/woodland trails & walking for approx an hour, if I would be overdoing it so to speak. Haematology team didn’t seem to be too anxious to advise one way or the other.
As for travel insurance, I have travelled extensively over the years, always made sure I was adequately covered.
I do realise there are no hard & fast rules as what to do or what not to do!! & all individuals are different, but I had reached the stage whereby I had lost complete confidence in myself even to get up & shape up to meet frends for a lunch or even a coffee! Just everything in relation to my condition was so vague, I didn’t know where to turn. Thankfully I eventually got the link to this site, such a difference to be in a position to read how others a coping with their shocking ‘rare’ diagnosis!
Hi, totally understand your concerns! My consultant told me to be as careful as I could be but to live my life.
I have been on a number of cruises. I still wear masks in confined spaces, sanitise at every opportunity and remove myself if areas are super busy. The first couple, not gonna lie, I was terrified, but now I feel much more comfortable.
You have to work out what are acceptable risks for you. Good luck and enjoy whatever you decide to do x
Thank you Kevan 7, it was a case of should I even look at flight info even as was so unsure of how serious my condition was or not! that is P V Ruba Vera Jak 2 mutation. The emphasis was on treatement only naturally, but nobody was in a position to advise me if my lifestyle should be changed from normal day living to go stay in bed! & rest altogether!!
I haven’t even taken a train journey since my diagnosis or even gone out anywhere at night. Did ask Consultant if it was ok to go for a walk! She said ‘yes you can go for a walk’! That’s when I realised I needed Councelling to get some guidance.
I used to do hill walking & only by chance I read somewhere that heights can make one dizzy & oxygen level is affected the higher one climbs.
Many years back, I used to visit a Store in my town. I hadn’t any difficulty in climbing up.two flights of stairs there but when it came to decending, I looked down felt dizzy, wonderered how on earth I’d be able to make it down, grabbed the rail & held onto it for dear life 'till I reached the bottom. This dizzy feeling was probably related to what was going on inside my body prob slowly & gradually over decades! Thankfully there is a lift there now if I wanted to visit the supberb restaurant on the top floor.
Apologies if I have gone off on a tangent from air travel to hill climbing to stair climbing!! but the smallest bit of info may be of benefit to others on this Forum. Anyhow, I’ve waved goodbye to the hills long ago, long before my diagnosis, due to stiffness with the passing years.
I was so relieved to read that another member on here is using the London Undergrpund withhout any difficulty in the sense that Isn’t feeling dizzy in anyway due to swift movement of train & boarding & alighting same.
As for Covid, I’m not in the least concerned about it as understsnd there is an Agenda behind it, won’t elabourate any further on the subject!
Thanks again for bearing with me!
PVMags
Hi @PVMags now that you are part of our forum family you are never alone.
Is somebody medical aware of how you are feeling?
Please do keep sharing how it really is for you.
If you would like to speak to someone the Blood Cancer UK support line is there for you on 0808 2080 888
Look after yourself and I think a quite a lot of us lost confidence over the last 3 yrs.
Hi @SallyB a great big welcome to our forum.
I like your consultants advice and I also agree that it has to be what you are comfortable with having weighed up the risks for you.
I was very scared and nervous the first time I ventured out but I am much more comfortable now.
I feel it is up to me to take whatever precautions I need to do.
I look forward to hearing more about you.
Look after yourself
I think that you have to go above around 2000 metres before oxygen levels change in a way that effects humans significantly mind about 10 years ago I went up Mt Lebanon at 3099m and I didn’t notice any ill effects but everyone is different.
Hi Erica, thanks so much for your comforting words and advice.
With regard to how I am feeing at times and if the medical team know, I did stress to the Haematoligy Registrar end of last year how I was feeling…felt hard to find anyone to compare notes with, due to the the rare Polycythaemia vera (PV) no’s, she noted my comments but next time I saw her she didn’t bother to even refer to my request re Councelling.
Apparently there are approximately 80 Patients with Polycythaemia vera (PV) in the catchemt area attending, which comprises of a few Counties on the North West Coast where I reside, but with no support nurse even, then left completely in the dark.
I registered as a Private Patient as my Private Health Insurance covers me for Consultants in that hospital. I managed to see him 3 times but he only claimed expenses on one occasion, so he went beyond his call of duty not to claim expenses for the other two Consultations.
Last year when I was attending the Clinics, following the blood tests, they kept increasing the Hydrea dosage, despite the fact that the reading hadn’t gone up past 0.45. I asked the Registrar why the constant increases, she said we want it down to 0.43. To add insult to injury one of the overseas nurses in the Haematology Unit said ‘We don’t want you coming up here’ , in other words stick with your Hydrea & take yourself off. WE don’t want you coming up here’ I was shocked & left the hospital & practically floated to the car park in shock. Perhaps that’s why the Consultant didn’t want to take me on… I & perhaps other people got the same line of treatment. I want other people on here wirth Polycythaemia vera (PV) to take note of this if in case increased chemo med is offered to them in lieu of venesectio alone or a combo of both.
The Hydrea, 6 × 500mg per week were leaving me exhausted & my hair was falling out at a vicious rate particularly aftet the increase of Chemo drug to 6 days a week.
I objected to any further increase via a phone consultation with a junior Dr per their instructions. A that point I was given a face to face appointment with the Consultsnt who was indeed very helpful & it was back to the drawing board re treatment.
Following appointment I agreed to go on combo of 3×500m in total per week & routine appointments back to the Hametology Unit (where I wasn’t wanted)
for blood test & Venesection if necessary. Am due back there next week, complete with my.notebook & pen, as per usual!! Does make them ‘sit up.a bit’ when armed with these weapons! haha.
Apologies again for the ‘long Chapter’ but one has to be very vigilant & speak up for themselves., so might give others a bit of courage during consultations.
I did verbally report that nurse to Registrar & Consultant, they listened, no apologies as such but I’m sure staff were hauled aside & lectured to!!
Erica, one thing I find bit difficult on this excellent Forum is the abbreviations people use for their Conditions. Of course each person knows & is entitled to use the abbreviation relative to their own condition as they are tuned to their symptoms, treatment, prognosis etc. They in turn may be asking what the heck is PVera, I could be using the wrong abbreviation & confusing them?
It isn’t that I don’t care about other people’s conditions, just that I’m getting a bit lost trying to categorise & establish who is suffering from what exactly! & who is a P Ruba Vera with or without a JAk 2 mutation like myself? Any ideas how I may get straight in touch with another Poly Ruba Vera victim! to identify with their questions & answers? If you think this is a 'tall order’
please don’t hesitate in telling me so!
Thank you so much and everyone on here.
Best regards
PVMags.
Hi @PVMags you make some good points and a lot of abbreviations go over my head to.
What I will do is copy your post to Blood Cancer UK for you. @BloodCancerUK
Thanks so much for taking the time to write your post, I really appreciate it.
We certainly want you coming on our forum.
Look after yourself
Hi Erica, thank you so much for such a prompt reply. I tend to go off on a tangent a bit! but atm am trying to fill in the backround to my diagnosis & how treatment is going plus side effects of treatment & any means of altering the treatment in an attempt to aleviate side effects At the same time maintain the blood readings within normal or reasonably normal levels.
The fact that Hydrea does weaken the immune system, can’t vouch for any of the other chemo drugs, what their side effects have to offer! but venesection is perfecly safe, I don’t shudder at the sight of needles so easier for me to cope with that method, only down side is visits to the Clinic would be more frequent.
Just for the record, in the course of my meeting with the Consultant, to discuss alternatives, he did offer 3 options to me:-
-
To go for Venesection only.
-
To try a combination of Hydrea & Venesection.
-
To try out an alternative drug to Hydrea on its’ own.
I was too scared to just go for an alternative drug, so I went for option 2 as didn’t feel the side effects of Hydrea when on the lower dose of 1 tablet on alternate days initially.
I do understand it is a trial & error situation for so many conditions, particularly in the initial stages.
Many thanks to you and all, once again.
Cheers!
PVMags.
Hi Limadi……it’s a difficult one isn’t it. My husband and I finally made it to tenerife for three weeks in January. He was diagnosed with apml last December and spent the whole of 23 until September in treatment. He gets monitored every two months. We spoke to his consultant who told us to go on holiday and have a good time. He said to try and stay out of the sun (I’m actually not quite sure why) my husband prefers to sit in shade anyway. I was really nervous about going away but decided to feel the fear and do it anyway. All went fairly well although in the last few days of the holiday he has developed some kind of cold virus so we will contact hospital tomorrow and just get his bloods checked out……I asked the hospital for advice on what to look out for and a letter stating the details of husbands diagnosis and treatment so I had this if I needed it. I also got yearly insurance through all clear ……I have to say it felt great to do a normal holiday for us……I hope you come to a decision about what to do, maybe try a short break first and see how it goes….take care xx
Great that you and your husband had a lovely holiday. Re staying out of the sun, my consultant told me that your skin is very prone to sunburn for at least 12 months after chemo, but it also puts us at longer term risk for some secondary cancers including skin cancer. So I slap on factor 50 suncream, sunhat and enjoy the shade (have never been a sunworshipper anyway plus my husband had a bout of skin cancer 8 years ago so we have been especially careful since then anyway) . Hope you have many more holidays in years to come
Thank you SallyB for your kind words of encouragement & good to know you were encouraged by your Consultant to live.your life.
All these questions gradually sprung to mind, Should I be able to this, that & go out & about as usual. Of course my priority was my diagnosis & treeatment for same, as you know already is a trial & error, but how far to go or should I treat myself like an invalid & just stay home in case over exertion may hindered my condition further🤔 all stressed me out. Just not enough info available from Medical team to guide me.
Again thank you & good luck to you.
PVMags