Hello, My name’s Pam and I joined yesterday. Just after New Year’s Day it was discovered, quite out of the blue, that our previously totally healthy son had a mass on his brain. ( This was following a migraine-like headache). He had a craniotomy a week later and we were all devastated to hear that it was a GL4 tumour. Since then life has just changed completely for all of us and none of it feels real. He has a young family and is our daughter’s beloved older brother and we all love him so much. We have all agreed with each other to be as open as we can when talking about feelings, treatment etc. and this, for us, has proved a blessing, although we’ve all become somehow hypersensitive and hugs and tears abound, but it’s obviously not all gloom and doom and there’s lots of warmth and laughter and positivity too.
My son has had 4 weeks of RT and chemo so far, which was going relatively smoothly apart from an increase in fatigue, when suddenly yesterday he had a seizure. After a thorough examination he was told that this was a side effect of the RT and he’s now on anti-seizure medication.
As well as explaining why I’m on here I also wanted to ask a question too. During his 4 week treatment break our son had booked a weeks holiday in Mallorca, hoping to spend quality time with his wife and boys. He’s now wondering whether they should go or not. Can I ask if anyone else, having experienced a seizure and maybe with a GL4 , has gone on to fly without ill-effects and, if so, did you manage to get travel insurance? Hope I haven’t rambled on too much. Any advice would be gratefully received!
Hi Pam
a warm welcome to the community. So sorry to hear about your son's diagnosis. What a rollercoaster ride of emotions for your all.
My husband was diagnosed with a stage 4 glioblastoma in Sept 2020 so I understand where you are coming from here. You go through every emotion in the book and then some.
My husband had a seizure two days before his craniotomy and has had a few wee episodes on and off since. He was prescribed Keppra to keep them at bay and so far so good. He's not had any issues flying. He's flown up and down between Glasgow and London a few times in the last nine months and last week flew to Switzerland to go on a skiing holiday at a resort in France with our daughter. Hopefully your son will be the same but its worth getting him to check with his CNS if he has any concerns.
Just as a thought, if he was looking for travel insurance, my husband got cover via All Clear Travel and it seems to be a popular choice.
My husband had 6 weeks of oral chemo and radiotherapy combined. Fatigue kicked in with him around week 4 and lasted for about a month after the treatment finished. Since then his energy levels have returned to normal and he's been able to continue with his running without issue. He's a marathon runner.
Hope this has helped.
Macmillan Support Services also offer lots of information, support, financial guidance or just someone to listen. It’s free to call 0808 808 0000. Most services are available 8am to 8pm, 7 days a week. Have a look by Clicking here to see what is available and we also have our Ask an Expert section, but do allow two to three working days for replies from our expert team
Sending you a huge virtual hug and lots of positive vibes. Stay strong,
love n hugs
Wee Me xx
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