Hi there,
I just registered with MacMillan today after a visit to the radiation centre yesterday for radiation planning knocked me for six. I was initially diagnosed with a spinal cord ependymoma back in 2018, I’ve had 3 surgeries, 2 rounds of egg freezing, a surgery to reposition my ovaries and am now due to start radiotherapy.
I’ve joined the spinal cord tumour group on here also but I thought this might be a good starting place to say hello and see if anyone else found the radiation planning session really daunting and scary?
i hope you all are keeping as well as possible x
Hi KsAbb and welcome to the Online Community although I am sorry to see you joining us and to hear about your diagnoses and ongoing treatments.
A cancer diagnosis can be such a stressful and challenging time but when it comes to support there is nothing better than talking with others who are on the exact same cancer and treatment journey. So well done reaching out.
Posting in the Spinal cord tumours group would be a safe place to talk to others who may have a similar diagnosis, treatment experience, to ask questions and get support.
I have been on my rare blood cancer cancer journey for over 23 years so although I have a a totally different type of cancer amongst my many treatments I have had 45 sessions of radiotherapy (hit my community name for my story)
The planning sessions are indeed daunting - this is a good word but I was never scared as the staff were amazing. The planning can take a lot of time but it has to be like this.
I had 3 sets of zaps. 5 on my tennis ball sized tumour on my forehead, this one required a lead full face mask, there was a 50% chance that I could lose the sight in my right eye but it was fine in the end.
The second set was 10 zaps were on every lymph-node on my body that required a full upper body mould and the final 30 was to all my skin, this again required a full face mask.
For me the biggest problems was my Spinal Osteoarthritis so the long periods of time laying flat secured down on the table was very painful and very uncomfortable……. but this had to be done to get the exact positioning and machine settings done
The treatments themselves were no problem as it was done very quickly, the only side effects I had was dry skin and fatuge but I think it was down to all the trips to the hospital and also the natural stress of the process.
Macmillan have many support services so do check out the Macmillan Support Line is open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. These services provide cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear.
We also have our Ask an Expert section but do allow a few working days for a reply.
Talking to people face to face can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing.
Give me a shout if you need further help but I wish you well with your treatments.
All the very best.
