Should we go on holiday?

Hi there,

Firstly welcome to the group. There's quite a few of us active on here so hopefully you'll find it useful. I found it really helpful just reading through the threads in this forum to see what others' experiences had been like. Although we are all looking after someone with, or suffer from, a GBM we all end up taking slightly different routes depending on how it progresses and local care provision.

My wife was diagnosed last June as well and after the surgery, radio and chemotherapy is now on a treatment break until next MRI in July. 

We waited until the last MRI in April before booking any holidays. The result were a bit mixed but we decided to go for it. So at the end of August we're going up to Scotland to visit relatives. I made sure it was all refundable just in case she deteriorates before then. In between then and now we've just planned lots of long weekends away not too far from home.

You don't mention if you were thinking of going abroad. If so there's a separate forum about Travel Insurance here: Travel insurance forum for cancer patients - Macmillan Online Community. I'm no expert but given the nature of GBM and that he's still in active treatment might make insurance for abroad fairly tricky. 

We did discuss at one point going on a holiday to Italy, a place we both love dearly. In the end though we decided that even if we could get insurance we'd be so worried if something happened out there mainly because of just not being familiar with the health system and having to potentially communicate with clinicians which can be hard enough in English. Also, we had an amazing holiday there last year with the kids which was when my wife started suffering headaches that we thought were due to too much red wine and sun.....

I can't think of any particular reason it would make him worse though. The only thing we have to contend with is making sure the accommodation is somewhere with reasonable access for my wife. She struggles with stairs and she can't be too far from the loo at any point.

As you're a fair way since diagnosis this might not be relevant but have you or your husband been offered any counselling at all? Either way it’s always good to talk so please remember you can call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, benefit and financial guidance or just a listening ear.

Sorry, I'm not sure I've been that much help here. I think it's one of those decisions where you have to weigh up the benefits against the risks for you personally. What a lot of people say though is this time is really precious for making memories so it's whatever does that best for you without too much risk.

It's good to have you in the group. There's a few of us with young children (my boys are 15 and 13) so hopefully if we can't offer advice as such we can at least empathise with what you're going through. I know it feels lonely but you're not alone. We're always here so just shout if you want advice or to just vent about things.

All the best and I'm sure you'll make the right decision for the family,

Chris

Hi KitKat83

I'd like to echo Chris' warm welcome.

I'm supporting my husband through his GBM journey. He was first diagnosed in Sept 2020 so we're further down the road than some on here.

Last year he travelled abroad three times. He went skiing with our daughter to the French Alps then spent a week in Paris with me in the spring. For both of those trips we got insurance via All Clear. Each trip was around £300-400 for cover. The conversation to get the quote was quite a difficult one but to put it plainly, they needed confirmation from the oncologist that he was expected to be alive 6 months after the return date.  His third trip was a boys long weekend to Prague that he took without any insurance. His risk/my worry but it worked out ok...whew!

We had no issues travelling. I had been worried about headaches on the flights but he was fine. In Paris, he did get more easily confused than he was at home at that point which did make the trip feel a bit more stressful than I'd envisaged.

There are some fabulous holiday destinations in the UK too though if you didn't want to risk the overseas travel. I seem to remember someone else within the online community opting for Cornwall instead of risking the flight.

If your husband is fit enough I'd encourage you to go and make those memories. If in doubt, run the idea past the oncologist for his thoughts too.

hope this helps

love n hugs

Wee Me xx

Hey Kitkat...

I'm so sorry to hear that you are going through this. I suspect that you are a warrior also.

You think that is a long post?  You obviously haven't seen any of my responses (also... see below). 

I tried hard to get the family out for as many holidays as we could.  My kids were teenagers and could take some responsibility - so that made things a bit easier for us.   At various points last year (when my wife was particularly unwell) family members told me I shouldn't go - but I didn't take unnecessary risks and it all worked out.  I found that the health professionals encouraged us to get on with things as normally as possible.  If you ask them, they will move appointments and chemo schedules around so that you get away.  They recognise the value in you and your husband being able to actually live your lives.

As to what you do... I think it depends both on how well your husband is post-surgery and also on your personality.  If he is getting back to himself then you might be more adventurous - if he is still confused and unsteady on his feet you might be a bit more conservative.

I never felt like going abroad once my wife was diagnosed - I didn't have the brain capacity to worry about travel insurance, foreign healthcare systems, airports or ferry terminals, etc.. But there are lots of great options in the UK.  

Things you might like to think about:

• Is there somewhere not too far away you can go?  Last year we stayed in a two hour radius of home (previous years we travelled further afield).  I wanted to be able to get everyone back if it all went to hell.
• Is there someone you can go with?  We generally took mother-in-law with us (she has been coming on holiday for the last ten years anyway) and I found that extremely helpful.  If you don't have family - could you reach out to some friends and plan to stay near each other?  Another adult will take the pressure off you if, for instance, your husband is unwell one day and the kids need to get out (they will!).
• Failing that - can you go somewhere where someone you can call on is within striking distance?  We went to Tintagel in 2021.  I nearly cancelled because Fi was only a month out of hospital  - but my eldest told me we all needed a holiday.  I decided I could risk it because I have a friend in Bude who I knew would bail me out and take the kids home for me if Fi got sick.  In the event she was fine and we had a great time (and IIRC he came down with COVID while we were there so it was just as well I didn't need him!) - but it helped me enormously to know that I had a backup plan.
• If your husband has residual mobility problems, avoid places with stairs.  Think about showers as well.  We did a long weekend last year somewhere with a shower over the bath and Fi only showered the one time because she felt unsafe getting in and out - if we had been staying more than a few days it would have been a big problem.
• For that matter could you do a few short breaks, rather than a big blow-out week?  You might find that less stressful.
• Even if you can't get away with the kids... can the two of you at least get away to a hotel somewhere?  We had a lovely couple of nights half an hour away last September.  At that point, I didn't want to travel further afield because I needed all my support structures nearby and wanted to be close enough to the hospital if I needed it.
• Quite a few airbnb listings provide good cancellation terms.  Some offer a full refund even up to the day before travel.  We booked a few of those last year - just in case.  We didn't need to cancel - though we did have to go a couple of days late because Fi was having a bit of an episode.  
• Think about the other things you might need to take.  Tablets (we had lots last year and one time I left them behind - thankfully we were only 45 minutes away).  Are there any mobility aids (e.g. shower stool)?  That might all be a lot easier with a car than if you are flying.
• Think about going somewhere where you have access to healthcare facilities.  I always made sure I knew where the hospitals were.

The main thing is to be aware of how much you are already carrying.  You really need to look after yourself in this and do what you can do make sure you get a break as well.  Ideally you manage to carve out some time for yourself for a bit of a recharge.  When Fi was very unwell last year, mother-in-law and I tag-teamed it so each of us got a few hours to ourselves each day.  It was enormously helpful to have some time to myself to get an ice-cream or just go and shout at the ocean.

So... try to go away together if you can.  Just have some training wheels - and maybe a backup plan or two.

Lots of detail - and none of it may apply to your circumstances - but hopefully some of it is helpful.

Big hug,

Pete

Thank you for your reply everyone I appreciate your time in reading my post and giving me a bit of feedback. It helps to know that there is somewhere for me to go with different questions and support during all this.