Radiotherapy - 30 treatments over 6 weeks

HI

please don't ever apologise for asking questions on here. That's what we are all here  for and  for the record, there is no such thing as a silly question.

My late husband had 30 radiotherapy sessions in combination with oral chemo. He didn't suffer from any real side effects other than fatigue which kicked in around week 4 and lasted for about a month after the treatment cycles finished. His biggest complaint was that the mask was too tight and they they squashed his nose every day! 

Everyone reacts differently so judge things for yourselves and if it is too much for your Husband to cope with then you already know you have the option to stop.

There's some great generic info on radiotherapy on the website. here's the link Radiotherapy | Types of treatment | Macmillan Cancer Support

We were offered an occupational heath review around the time G started his treatment and I would encourage you to take up any offers of assessment for in and around the house. G, being the stubborn soul he was, refused the offer. 

This is a safe and supportive space so please reach out here anytime. There's always someone about to listen who gets it, someone to hold your hand and to offer a virtual hug when its needed. You're not alone. We've got you.

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.

For now though I'm sending you a huge virtual hug and lots of strength

love n hugs

Wee Me xx

Hello. I had 30 sessions mon to fri over six weeks. This was after surgery. No problems at all(although Im a fair bit younger than your husband. Ii didnt have any sort of assessment by social dervices yo this day over a year later. Best of luck to him

Hi Tashie, Thank you for your reply and good wishes. It was reassuring to read that your radiotherapy treatment went well and that you didn't need to have any social services assessments. I hope everything continues to go well for you for many years to come.

Hi Wee Me,

Thanks once again for your reassuring and helpful reply. My husband has agreed to social services assessments but they seem to take a while to arrange and I'm still waiting for someone to contact me. We spent quite a few hours at the hospital on Friday when my husband had yet another MRI scan, he then had his mask made/fitted, and finally a CT scan. Now we are waiting for the treatment plan and dates to come through assuming the scans are OK, biggest problem then will be accessing transport. I gather that if we lived in the same county as the hospital it wouldn't be an issue getting patient transport but because we live in a different county, despite the hospital being the main one for our area, it causes issues and I can't pre-plan anything till we get the dates, I'm hoping the start of the treatment won't be at to short notice and no doubt we'll work something out in the end, but I could do without all the additional hassle just now.

love & hugs  x 

I received that initial treatment. The mask fitting was a bit weird but ok; the treatments hardly took any time at all, I still have the mask; many people had different ideas to paint it or grow cress out of it. I was ok with the treatment but was a bit oh no when my hair fell out on the cancer side area. Very weird experience for me just rubbing and it came off like candy floss. Mines has grown back kind of. I looked like friar tucK.  Very light hair. But I’m never too bothered by things. The family joke is saying “it is what it is”

 Hope everything goes well

Thank you for your reply W J and it was good to read your treatments went well. We have been warned about possible hair loss and like you, my husband wouldn't be too bothered about that either should it happen. I found the mask making/fitting process quite interesting to watch, but I did feel sorry for my husband as it is, as you comment, a rather weird experience. We were told we get to keep the mask if wanted after the last treatment, think we will wait and see until we get to that point. I hope everything continues to go well for you.

HI

transport can be a challenge. We had a 60 mile round trip to the hospital every day. Have you checked if your local hospice offer transport support to appointments? I know that this is something our local hospice offers. Volunteer drivers take folk to and from their appointments. Might be something to look into.

love n hugs

Wee Me xx

Hi Wee Me,

I'm still hoping the hospital may be able to arrange some transport. I have spoken to our local volunteer driver support groups and they might be able to do odd days but they can't commit to all of the 6 weeks/30 days. We don't have a hospice nearby but that's certainly an idea. Until we get the treatment dates I can't really do anything. At the appointment last Friday, we were told that the treatment plan would be discussed at the next 'team' meeting but we don't know when that will be. Final scans were done and the mask is ready, I suppose it will depend on whether they want to make a start before the seasonal holidays or wait until the New Year.

Love & Hugs x

My mother (now 76) has a meningioma - diagnosed 2011, surgery 2012.  Has slowly been growing since - was advised by oncologist to have 6 weeks radiotherapy in December 2023. Radiotherapy completed without any issue - however three weeks post radiotherapy my mum had a seizure (had been on a low dose of steroids).  Was diagnosed with epilepsy and prescribed anti-epileptic drugs and higher dose of steroids. 

A couple of small seizures during course of early 2024, resulted in significant cognitive decline for my mum and diagnosed with dementia in January this year, with carers visiting twice a day to ensure she takes meds and eats a hot meal. With the right interventions my mum is doing well and is still living in her own home, which we hope she can for as long as possible.  

Make sure you push for the social care assessment and also ensure enquire about steroids post radiotherapy.

Hello Ogif,

I was sorry to read about all your mother has been through, and thank you for sharing with me just how well she is doing and that she is still managing to live in her own home with a little help - that was good to read and long may that continue.

We found out yesterday that my husband is now only going to have just 5 radiotherapy treatments over 8 days, which is thankfully a big reduction from the 30 previously discussed. Due to the reduced number of treatments I have also been able to arrange volunteer patient transport for all 5 days with the same person which has been a big weight off my mind. 

A specialist nurse rang yesterday to confirm the treatments and he did mention whilst chatting that my husband would most likely have steroids at some point, and I will be sure to follow that up as necessary. I must say the hospital team seem very nice and helpful/supportive. Having made enquiries a few weeks ago about a social care assessment some one did actually ring this morning and my husband is being referred for a home assessment now that we know his treatment dates, so fingers crossed on that front. Only minor issue is that my husband doesn't seem to think he needs a any help, but I think the social care team are used to this and I keep telling him that people are only trying to help and I can only do so much on my own.

Love & hugs to you and your mother.