Hi, please can you tell me your experience after having the mould made. My husband has his first radiotherapy treatment 3rd of January. Scared is an understatement and any words of wisdom will be gratefully received.Jason has cancer of the left tonsil and of his mouth. He cannot open his mouth far at all so has a feeding tube. Hes over 6ft, solid as a rock in stature, hard to see a grown man cry.
Thank you
Lisa
Hi Ellafen
I am an occupational therapist and have worked in oncology so knew what the 'process' would be and knew it might be difficult
Even so I was surprised to be in tears when the mask fitting was done
I coped with the making of the mask, it was when they fixed me to the table for the scan pre treatment that I became upset
The radiographers were lovely and very understanding and did everything they could to reassure me
I found that lorazepam really helped me tolerate the 30 sessions I needed to have to 'manage' my glioblastoma (there's no cure)
You can explain the difficulty and ask for this to be prescribed before he starts the treatment
I don't know what else your husband might find helpful- I know that they can offer music as a distraction- though I preferred silence
Friends having treatment for breast cancer also found relaxation techniques and mindfulness helpful
I wish you both the best of luck with the treatment
Camilla
Hi Ellafen
I didn't think much about the mask until it was time for fitting it. I Felt very claustrophobic and anxious but eventually calmed down. Two things helped - firstly, the mask was pressed very firmly on my face so I couldn't move my eyelids - this was my worst feeling. They agreed to remove one of the plates under my head (there were 3 plates to adjust height) which released some pressure. Secondly my mask had no cutouts for the eyes apart for the normal mesh. I've seen masks with eye cutouts so ask for that ideally before the mask is made. But even after, cutouts can be made as long as the mesh isn't compromised.
I wish you both luck with the treatment.
Hello thank you for your reply and for sharing this.Do you mind if I ask how you coped with the radiotherapy? He has been told it's more like 7 minutes than 10? Also has been told that after 10 sessions of radiotherapy it will hit him in a big way.
I thank you and hope all goes well for you.
Lisa
It is different for each person. Although my radiotherapy was for a brain tumour the actual therapy session lasted only a minute. I coped with it well. The effects do accumulate after each session but there were no major problems and I was able to continue with a fairly normal life. It's best not to worry too much - every case is different so be positive that you will be able to cope well.
I wish you well.
Hi Ellafen,
I found it useful to relax, close my eyes, concentrate on staying still and breathing during the treatment. As the treatment progressed, I felt relaxed enough to try and go to sleep during each treatment process.
The radiotherapists were pleasant and reassuring and everything went well. I am sure it will be the same for your husband. 🙂
Mine was glioblastoma, so more up in the head. They can adjust a very small amount of tightness but not by much at all.The first couple of visits can be a bit mind effecting, but he will probably get used to it. Mine was every day for 6 weeks.
Hi Lisa,
My treatment was in 2010, so a long time ago and it was for a grade 4 glioblastoma in the right temporal lobe area.
Everyone's radiotherapy treatment is different, due to type of tumour and location, but I don't think it was that long. Most of the time was taken up with setting everything up, making sure the face mask fits, is comfortable and checking you are ok. I think the actual treatment was over fairly quickly; once it's finished, the mask is removed, you are checked to ensure you are ok and then leave the room. I think the whole process may have taken about 20 - 30 mins if that.
I hope this helps
dear Tansi
I hope that you don't mind me asking, but you are obviously an 'outlier' in terms of living longer than the 'average' person with a glioblastoma diagnosis
Could you share any information as to what may have contributed to this in your view and that of your medical team?
I appreciate that everyone is different and what works for one person may not work for another but it is worth a try!
Many thanks
Camilla
Hi Camilla
No problem with answering questions, I think the following are the main contributors to living beyond my prognosis:-
1. My wife's insistence that we go directly to the nearest hospital, when I became ill due to the first tumour. I was at work at the time and my wife worked not too far away from Trafford Town Hall. I just wanted to go home and to bed, if I had done that I wouldn't be alive today.
2. The A&E Doctor who saw me at Salford Royal Hospital, was quick to respond to my symptoms and send me for a scan. As a result of the scan I was diagnosed with a brain tumour and admitted straight away. My operation then took place on the following Wednesday. I believe that early diagnosis and swift treatment are key to survival. So my tumour was caught at an early stage in it's development.
3. In January 2009 my elder brother David had been diagnosed with the same type of tumour. So prior to my illness we had been through the process of doing our best in supporting David as best we could. So when I was diagnosed with my tumour, we already knew exactly what we were dealing with and what was to come. This enabled me to say to my wife, the following day after my admittance to the hospital, when she came to see me. That my and our stance was going to be dealing with events one day at a time, one step at a time and that we were not going to jump to any conclusions or 'what if' scenarios. Thus enabling us to get on living our lives together, for however long that may be.
4. I have an excellent oncologist who has always had an 'holistic' approach to my treatment. She is just as concerned about my wife's health and wellbeing as she is with mine.
She never questioned our view that we were going to continue to have a long life together ahead of us after my operation after giving us the diagnosis. When we said we didn't want to know the prognosis (we already knew what it was), she never questioned are reasons why. She has always been supportive of us getting on with living lives together as best and for as long as we can.
5. My drinking of ozonated water and use of drops of 3% Food Grade Hydrogen Peroxide (Multi Purpose), I believe have also played an important role in living well beyond the prognosis. I have uploaded the document about 3% Food Grade Hydrogen Peroxide onto the post I've placed on the Brain Tumour Charity's BRIAN APP Discussion board. Also my use of Higher Natures Immune+ tablets, which are designed to boost the immune system.
6. Taking the time to rest and recover after my treatment and a belief that my brain will 're-wire' itself after surgery and treatment. Also keeping my brain working by doing the cryptic crossword, jigsaws, playing the game on my mobile phone and reading, whilst going through treatment.
7. Turning our hospital visits during my treatment, MRI scans the Sativex trial, into mini-breaks by staying in a hotel, this helped to break up the cycle of just 'go to and from' appointments. Allowed me to rest after radiotherapy, do some shopping therapy and go to gig's if there was one we wanted to attend. My wife opened my ears to Country music when we first met, so we managed to see Willie Nelson a couple of times after hospital appointments.
8. Staying positive, healthy and keeping fit. I believe diet is very important, so have cut out unnecessary sugar; cut out alcohol, with an occasional treat; using fresh fruit, veg, etc. Including blueberries, pecan nuts and turmeric spice, which have anti-cancer properties in my diet. Eating home made food as much as possible, with eating out being a treat.
I hope the above helps.
Stay safe, well, warm and positive; have a special X-mas and New Year.
thank you so much for such a detailed reply
I am sure that this information will give ideas and hope for others such as myself
Some aspects I can influence, others I cannot (sativex for example)
Wishing you and your wife a Merry Christmas and a Happy New Year
Thank you for your generosity in sharing
Camilla
Hello, thank you for reaching out to the group. It's very understandable that you have questions about this and I'm sure many others in the community will relate to those feelings of anxiety - you are not alone. We do have a useful web page on radiotherapy, which includes information on having the mask made, and personal experience of the treatment: thebraintumourcharity.org/b... I hope this helps to answer some of your questions. Please do reach out to us on the Support Line, should you, or your husband need any further information, or just want to talk. You can give us a call on 0808 800 0004, Monday – Friday 9-5. Alternatively, you can email us on support@thebraintumourcharity.org. Warmest wishes, The Support Team.
Hello thank you for your reply.My husband had a brain tumour 5 years ago.
Unfortunately is now facing radiotherapy and chemotherapy for throat cancer hence why I asked for advice.
Thank you
Lisa
Hi Ellafan.
I was given some good advice. Keep eyes closed, relax by breathing slowly and deeply. Think of somewhere nice and go there in your mind. Worked for me and hope will work for your husband. Sure, mask fits really tightly - for a very good reason! For my CT scan after fitting it was a really weird experience and a little uncomfortable. But just letting all muscles relax with slow deep breathing helped. Almost dozed of before it was all over.
Hope that helps.
All best wishes for 2023. Keep smiling. Not easy, but works wonders!
Hi Bobby,Thank you for replying and sorry for the delay.
He is dealing with the mould now better than he was. He is 2 weeks in, 13th February is the last one, fingers crossed.
Anyone going through this is incredibly brave, I salute you all.
Hope you are well and moving forward.
Lisa
Hiya. So glad your husband has been able to deal with it better.
I start my radio on 23rd for 3 weeks plus the dreaded chemo.
Stay strong. Stay positive. Easy to say I know. Not so easy to do.
Wish you both well and good fortune.
Bobby
Hi Bobby,Considering you have yet to begin treatment you have a great outlook.
Jason said listen to your body. He exercises when feels he can and rests when he can't.
It is important to keep moving and getting fresh air, even for a short while.
The chemo and radiotherapy together is tough and you will need to dig deep as Jase says. I don't know where yours is but for Jason the radiotherapy has numbed his nerves and the pain is more bearable. He has tried not taking so many meds but as time has gone along he realizes he needs to.
For a loved one trying to give comfort there really is nothing that we can say. A hug, holding of the hand and understanding is sometimes all you can do. I hope you have support it's a tough time and difficult to deal with it alone.
We have met some wonderful people, professionals and other patients and loved ones. It seems to help everyone to talk and share experiences.
We have heard the bell being rung many times giving hope to all.
We wish you well and hope that you keep your spirits high.
Good luck.
Thank you for your kind words of encouragement. I've learned the hard way to listen to my body and rest rather than fight it.
I've been told to prepare for the therapies to be tough. Expect the worst and hope for the best so to speak.
So I'm going to take Jason's advice to dig deep!
Thank you again for your words of encouragement and advice It really does help
Wishing you both good fortune
Bobby.
hopefully you won't experience any side effects from the chemotherapy Bobby.I've completed the 6/52 radiotherapy and chemotherapy and am now in the 6 month phase of 5 days of chemotherapy folllwed by 23 days without
I completed my 2nd cycle of chemotherapy last Friday. I'm sure you'll be prescribed anti-emetics. As the medical team advised me, it's better to prevent side effects such as nausea than experience and then try and deal with it
I am currently signed off work and it's looking unlikely I'll return unfortunately
I'm able to walk 5km but not every day
I often spend mornings and sometimes the whole day in bed because I'm fatigued- it's difficult to say whether this symptom relates to the radiotherapy or the chemo or a combination
Plus for the past 3 years I've had long covid with my primary symptom being fatigue
Best of luck with your treatment
Camilla
Thank you Camilla.
Your advice and encouragement are very much appreciated.
I'll be sure to take the tablets to suppress nausea.
So far I've found tiredness the hardest to deal with as was very active. Now a 1 km walk can tire me out. But slowly trying to build up distance. If I can get to 5km like you can I'll be well pleased.
Wishing you good fortune on your journey.
Bobby.
Hi Camilla I hope you have some good days.
My husband is suffering with ulcers and blisters, mouth and throat.
I understand this will get worse, hes three weeks in.
Unable to eat, not really using the feeding tube either. He had a shock today, hes lost 4lb since friday, hes stepped his protein drinks up.
Did you suffer with blisters?
He can deal with the fatigue but the ulcers are brutal.
Thank you
Lisa
dear Lisa,
I'm very glad to hear from you.
I haven't experienced blisters but perhaps because my GBM is frontal at the moment?
The fatigue is brutal but I can sometimes do one thing a day - yesterday I met for a meal with friends I used to work with years ago. When I do something like that I am able to enjoy being with others, but always with a bittersweet feeling, knowing I will not have years of life ahead
You mentioned a book you were hoping to read - did you find it helpful?
I haven't yet looked at the CancerActive site / videos that I mentioned. I just can't seem to organise myself to watch it - much prefer The Repair Shop 😉
Take care and do keep in touch if you can
Camilla
Small cell glioblastoma 
Sudden Personality Changes
