Hello all,
Hope you’re all doing well. I’m now just over a quarter of the way through my treatment! 8 sessions down, only 20 to go! So far so good. Slight tingly burning in the downstairs department bit like very light sunburn. Vaginally feels a bit dry and labia feel a bit depleted.
However (isn’t there always a however 
) I am in so much pain. I had this pain before the treatment. In fact it was the pain in my leg and buttock that led to me going to the doctor. Size of my two tumours the culprits.
The pain is excruciating, I often randomly cry out. I pace the floors at night. I have tried all the pain killers you can think of… Oromorph, Pregabalin, Amitriptyline, Co-codomol, Ibuprofen, Paracetemol. I also use ice packs to numb it and at night heat to relax it.
It concerns me that even a 10ml dose of Oromorph gives me at most only 45-60 mins of pain relief!
I chatted with my oncologist yesterday but it was a brief and very rushed call (on his part). I tried to get across the pain I’m in but he was kind of insistent this is normal. The tumour in my pelvis is pressing on nerves. I understand this. But to me this feels like a deep deep bone ache - yes, I cannot help being concerned especially when Oromorph doesn’t even touch the sides really. And Pregabalin 3 x a day which is for nerve pain also seems pointless. I’ve given up on Amitriptyline as it made me ridiculously tired all day everyday.
Just wondered if anyone else had had this and, if so, what helped? If I can’t get this pain under control and then from next week or so I have to add in the pain of radio burn etc I honestly don’t know how I’ll manage
M x
Hi Prettypinkroses the pain level sounds absolutely awful. I wonder whether you could be prescribed slow release morphine which should give a sustained level of pain relief throughout the day. Whilst the pain you are suffering may be 'normal', as per your Oncologist's response, this doesn't mean it just has to be tolerated. Could you perhaps arrange another call and explain that the medication you are taking isn't effective and ask about the slow release morphine which, as I understand from a friend when took this while undergoing treatment, is taken in the morning. I know it's sometimes difficult to challenge doctors, but I would be insistent with your Oncologist that your medication regime needs altering. On a positive note, it is usual for larger tumours to begin to shrink fairly rapidly during treatment so hopefully as the radiotherapy progresses you will see some improvements quite soon as the tumours apply less pressure to the nerves. Bev.
Thank you 1in1500 
Good thinking! I think slow release morphine might be worth a try I’ll send my onco a message. I certainly can’t go on as I am. I’ve just been up all night again and I really cannot bear to just keep taking things that don’t really work for me. As I’ll be going into my 3rd week of treatment I think I definitely need to have something in place as I understand that this is when things start to happen. In fact last night I definitely felt like things were sore as I wiped and I haven’t had that before. Oh the joys! BUT hopefully it means the treatment is working!!!
Another quick question, has anyone else had their period whilst having radio? Luckily it was day 1 on Friday so it was so light it didn’t matter and actually I wore a tampon up until 5 mins before so that really helped. But tomorrow I don’t know what I’m going to do!!! I did ask the lady on my radio team but she hasn’t had anyone with their period before so just said don’t worry they’ll give me some privacy to get sorted and not to worry. Obviously I lie on some paper on the radio bed and my treatment is over in 5 minutes pretty much. But still a tad concerned….
Thanks again!!! Xx
