New diagnosis

Hi Donste

a warm welcome to the group. So sorry to hear about all that you are going through. Being scared is allowed.

I've been supporting my husband through his stage 4 brain tumour journey so a different scenario entirely to yours but he did have 6 weeks of radiotherapy. 

He had his 6 weeks of treatment as a combination of oral chemo and radiotherapy but had no real side effects other than fatigue. It hit around week 4 and lasted for about 4 weeks after the treatment cycle ended. He lost a little hair around the area that they targeted but it grew back really quickly. His main complaint was the mask he was fitted with was too tight and that the nurse squished his nose every day. 

There's some generic radiotherapy advice on the main website. here's the link Radiotherapy | Types of treatment | Macmillan Cancer Support Hopefully that will help answer some of your questions.

This is a safe and supportive community so please reach out here anytime. There's always someone around to listen who gets it. Someone to hold your hand and offer that virtual hug when its needed. You're not alone.

It’s always good to talk so please remember that you can also 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

I hope this has been of some help. Can I also suggest that you write down all your questions/fears/concerns and take those notes to your next appointment. Its very easy to feel overwhelmed in those early appointments and the notes will help you stay focused and make sure you don't forget to ask something that's important to you.

Sending you a huge virtual hug and lots of positive energy. Stay strong.

love n hugs

Wee Me xx

Thankyou so much for taking the time to reply . I was feeling so alone . 

Dear Wee Me, I don't know if I'm doing the correct thing messaging you directly, please accept my apologies if not, but your post was so warm and kind and helpful that I felt comfortable contacting you.

I am a friend and neighbour of a lovely lady who has been diagnosed with a glioblastoma brain tumor. She actually has two and has had a 7 hour surgery to remove the majority and is recovering well, but is diagnosed as terminal.

Radiotherapy is due to start soon, the mask has been made and I am going in several days a week to cover for the amazing daughter who is working full time.

I would just really like any advice on the side effects of radiotherapy and how I can help her be as comfortable as possible in her last few months. I have cared for people with chemotherapy but not radio, I feel a bit ignorant and don't want to make mistakes.

I am reading every pamphlet, leaflet, website and forum but struggling to discern what is accurate and relevant.

Any advice you have would be greatly appreciated, many thanks in advance for your kindness x

HI 

a warm welcome to the group.

it's fine to direct your message to me. Sorry to hear about your friend. That's so kind of you to support the family at this time. So many people offer to help then "disappear" when you actually try to take them up on the offer.

My other half coped really well with the radiotherapy. He had 5 sessions a week for 6 weeks in combination with oral chemo. There were no major side effects with either but its hard to say which caused what, if you get what I mean. 

The radiotherapy lasted about 15-20 each day and every day he came out complaining the mask had been too tight and they'd squashed his nose. He lost a line of hair around the area they targeted but it grew back quickly. he also had some dry itchy skin after a few sessions, a bit like sunburn, but he was given cream for that. We just treated it like sunburn. Fatigue was his main side effect and that kicked in around week 4 and lasted for about a month after treatment finished. Initially he other symptoms did appear slightly worse ( poorer speech, more confused) but things improved once the treatment stopped,

Hope that helps. happy to answer any other questions you might have.

sending you a huge virtual hug and lots of positive energy. Stay strong,

love n hugs

Wee Me xx

That is a HUGE help, thank you so much! We start radiotherapy on 28th of this month, if it's okay I may be in touch for more advice once treatment starts? We have a palliative care team coming to visit now and a private care company getting involved tom help out in the hours that myself or her amazing daughter can't be there. 

Thank you so much again for taking the time to reply, it may not seem much bit your words have made me feel so much better, I very much appreciate it!! With huge thanks and much gratitude xxxxx