GBM4 & travelling after radiotherapy

In our experience it is a great idea.  That exactly what my son did, he and his girlfriend had a holiday in the UK, apart from the patchy hairloss he had little side effects.  The tiredness he had from radiotherepy was more from the 2 hour round trip every day than the treatment itself.

Hi reading your story is like looking back at my life since Oct 8th 2019. I turned 50 in the Maldives and they diagnosed my husband whilst we were there. Exactly the same condition. We eventually travelled home. 95% of his tumour was removed and then he started radio and chemotherapy. He had literally zero side effects from any of the treatment apart from a small amount of hair loss around the radiotherapy site. His hair has now grown back there darker and stronger ... bizarre. We went for MRI last Tuesday and were told the remaining tumour has reduced in size and so the oncologist wants to continue chemotherapy for an additional 6 months . We had 5 trips booked but all had to be cancelled due to COVID. I feel cheated as he remained so well throughout he could easily have and more importantly wanted to continue to travel. Our insurance was void as the tumour is now considered a pre existing condition. This didn’t matter to us, he is so well we were happy to take the risk. For now we await confirmation of borders opening to the countries we wish to visit in between his ongoing treatment. I wish you luck with your plans xoxo

I’d wait until he’s a couple of weeks in before booking anything to see how he reacts. My husband has been so debilitated by fatigue he can barely get to the toilet. It got worse as the weeks went on, but now in week 6 he seems a little better. Everyone is different and your husband may sail through. 
I think travel insurance will be a challenge but do your research. You’ll also need to check any insurance will cover Covid (high risk with his compromised immune system). 

SSGWS,

We went through the same thoughts when my mother was done with her radiotherapy. We did travel but we didn't do any international travel for a couple reasons. With every return of the cancer, it always came suddenly in the form of a seizure or stroke like symptoms, both of which would put her in the hospital for days at a time while diagnostic tests were ran. For some this isn't a problem but my mother hated being in hospitals to begin with and the thought of a foreign hospital scared her even more. There was also the problem of health insurance in a foreign country. There is also a possibility, perhaps remote, that if something happened and she ended up in a foreign hospital she might not ever recover enough to return back home.  In the end, we made the decision to travel but never to someplace where we couldn't at least drive or take the train back home. 

Best wishes.

Thank you for sharing your story. We have experienced similar - diagnosis and surgery in May. My husband, mid 50s,  is now in his 4th week of radiotherapy. He is tolerating it well, no debilitating symptoms, from the outside our lives most likely appear normal to many. We have started to plan a long weekend break in the UK towards the end of the three weeks after radiotherapy finishes. This feels right and very doable for us .

A nurse said to us ‘you have treatment to enable you to keep on living, to keep doing the things you love’. I return to that advice often - it helps.

Take care x

Hi

Like you we were planning on getting away in the break between radiotherapy and starting Chemo

We were told that flying was not a good idea as it increases the pressure on your brain which will already be swollen due to the radiotherapy

Maybe a nice weekend away somewhere not too far might be a better option

Take care

Hi,

We actually took a trip in the UK during the like the 3rd week of radiotherapy treatment, spoke to the radiotherapy team and arranged treatment for first thing on a Friday and we went straight after that and then asked for an appointment late on the Monday so we could travel back Monday morning.

I recall them advising not to fly due to the swelling still present from surgery and also the build up of swelling from the radiotherapy (the swelling hits it's peak in the 2 weeks following treatment). Though the best thing to do is speak to your oncology team as everyone has different reactions to treatment and they would be able to tell you the right thing for your husband.

I was generally ok during the treatment but was a little tired in the couple weeks that followed it, for me once I stopped going the adrenaline of gearing myself up for doing it everyday wore off. Though I did also have a round of immunotherapy a few days after my radiotherapy finished as well which might have had something to do with it. 

Hi, 

Like everyone has said the treatment effects seem different for everyone but like Xpio said the effects sometimes don't kick in until you stop the 6 weeks chemoradiation. My husband who is 50 was pretty good during his treatment but once it finished he had quite bad fatigue. He was planning on keeping busy after treatment doing jobs in the house and garden to get fit and get back to work in a couple of months.  He wasn't able to do most of the things he had planned. 

I would say a holiday is a great idea in.the break betwee the radiotherapy and starting chemo cycle 1 but staying in the UK  might be better. I know my husband feels safer being only a couple of hours away from home and being fairly close to hospitals if needed. 

however, like with everything now you must do what feel right for the 2 of you, enjoy the good  days. 

I hope the test of his treatment goes well and you both stay safe

LC

Thank you all for taking the time to reply - your responses have been really great to read as most are very positive at a time when we really needed it most. The treatment regime is so daunting but we are now 2 weeks in and he has been responding well - no nausea or sickness, just a bit tired but nothing debilitating. We know, of course, that it is usually a couple of weeks in before side effects kick in for most people, but we remain hopeful!

With everyone's advice taken on board, we are planning a few days away a couple of weeks into his treatment "holiday" (between the chemoradiation and the chemo), staying in the UK and just a couple of hours from home. Currently researching places with good cancellation policies!!

Thanks again and best wishes to all xx

Hi LC

Thanks so much for your post. Might you let me know if your husband’s fatigue has continued? My husband is finishing his last day of chemoradiation today. He has coped extremely well but this week has seen the start of moderate fatigue. 

We understand side effects usually have a 14 day lag, we are expecting the fatigue to possibly get worse and continue for several weeks. Was this your experience?

Thanks for any advice you can offer.

Best wishes to you both x