Good morning
I've recently been diagnosed with a s4 glioblastoma and had my debulking surgery at St George's hospital which went extremely well and they removed 90% of the tumor. I start radiotherapy and chemo on 1st Nov and I'm terrified of the side affects as we have a 2 year old son and everyday spent with him is so precious. I hate the thought of missing time with him through the treatment process.
I'm only 37 and a fit outdoorsy mum so I'm hoping this holds me in good fitness to make the most of my time with my husband and child
Hello Sharklover
welcome to the online community. Sorry to hear about your diagnosis but that's a positive that surgery went well.
My husband (now 52) was diagnosed with GBM 4 in early Sept 2020. He too had his tumour debulked before going through the 6 weeks of of oral chemo/radiotherapy. He's a fitness freak and was a marathon runner.
I can understand your nervousness about facing the treatment but thought I'd try to allay some of those fears. My other half coped really well with it. He felt a bit rough the first few days with the chemo but the hospital gave him strong anti-sickness tablets for those first few days and although he felt yucky, was never actually sick. He had weekly blood tests to check the platelet count and he made it through without issue. His biggest complaint around the radiotherapy was that his mask was very tight and that they kept squashing his nose....what can I say! By week 4 the fatigue that they'll warn you about kicked in but he was still up and about every day. The fatigue lasted for about 3-4 weeks after the treatment ended.
He remains physically very fit still. He runs more than 50 miles a week and is trying to achieve 2021miles for this year. (he's at about 1700 so far) His tumour was in the Broca's area of the brain that controls speech, language and understanding. His symptoms are more mental than physical. Ask him to run a half marathon and off he'll go quite happily. Ask him to read a news article and he wouldn't be able to do it sadly.
In January of this year he was offered 6 months of further oral chemo (one week of chemo then three weeks off for 6 months) He declined that option, a decision I need to respect and has declined all further treatment.
This group has been a great support to me as has the Glioblastoma multiforme brain tumour - Macmillan Online Community. There's always someone around who "gets it".
Please remember too that 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. We also have our Ask an Expert section should you have any more specific medical/technical questions, but do allow two to three working days for replies from our expert team.
I hope this has helped allay some of the fears. It's a rollercoaster ride for all involved in this journey but please be rested assured that you're not alone. There's always someone here to listen even when you might need to vent and to offer you virtual hugs.
Stay strong. Stay positive.
love n hugs
Wee Me xx
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