Just starting a new journey

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Hello, I am Fiona. I have been through breast cancer during the Lockdown. Coped well despite being so isolated. Then a year ago a new primary- Endometrial cancer with some clear cell components. I had a high BMI and other health issues so it took time to get so many tests and opinions about my chances of getting through major surgery. In May I had a full robotic hysterectomy using the DaVinci Robot.Again I sailed through it all, though the brachytherapy was tough. Feeling good apart from a worsening of a long standing lower back issue. I’ve been so focussed on trying to get stronger and have better pain control, but last week I finally asked my cancer nurse if there could be something else going on. An emergency MRI was ordered and wham! The cancer has popped up again in my sacrum. Not operable. Suddenly my whole world has shifted again. I don’t have a plan yet- seeing the consultant on Thursday but already found support from kind people on the Cancer research pages and was signposted to this forum. It’s all a bit overwhelming at present. One minute I am watching videos on sciatica as the GP had diagnosed nerve root compression. But when the doctor sits down beside you and takes your hand to tell you the scan results I guess you just know! Handing me a bottle of Oramorph made it real for sure. I think joining this forum will help me a lot. I am heartened by the positive stories and humbled by those who have suffered so much more than I have. I have so much to take in just now and so glad forums like this exist.

anndanv 1 month ago in reply to FionaMac

Hi Fiona, I’m in Scotland too Bishopbriggs East Dunbartonshire about 12-15 miles from Glasgow. Yes it is usually after hours when the pain flairs up. It makes it a very long night!

My liver Professor wrote to my GP and asked him to refer me to The Pain Clinic. I thought I would have to wait months for an appointment but a letter came last week for me to attend an information session on Monday morning at the hospital. Then they telephone in the afternoon to ask what you thought about the introduction morning. Next I will get a one to one aptm. I cannot take a lot of the stronger painkillers because of my liver, so they are not quite sure yet what I can take. I will let you know.

Good luck seeing the Consultant later today and please remember to tell him/her how you feel at night. I would say mostly the Consultant usually tells the GP what to prescribe, so it is worth bringing up the subject! Please let us know how you get on!

Love Annette x

Yesterday is History, Tomorrow is a Mystery, Today is a Gift!!!

FionaMac 1 month ago in reply to anndanv

Thanks again Annette. I had my oncologist appointment today and he recommended OxyContin twice a day, paracetamol four times instead of the cocodamol and pregalbin I think. The GP changed that to amitrptiline yesterday but today the oncology said no he prefers his choice or gabapentin for the nerve toot compression I’ve got. So here’s hoping it helps!

BoxOfFrogs 1 month ago in reply to FionaMac

Hi Fiona,

Welcome from Aberdeen. I have bone mets in several places (spine, ribs, sternum), but my pelvis is the worst painwise. I went from being treated as if it was a sprained muscle with physio exercises to being told I had incurable cancer and not to do any exercise that could damage my bones. It really did take the ground from under me. That was the end of last Nov. I was referred to Macmillan nurse for pain management, and currently take dihydrocodeine and paracetamol with morphine for breakthrough. It leaves me with a little pain but would need to ramp up the meds significantly to rid myself of it and prefer to live with it for now. Life gets so much better when the pain is dampened and under control. I fell asleep early yesterday and missed my final dose, woke up 11 hours after last taking meds and owwwwwwwww... Regular meds, morphine, heat, rest, it took the morning to get back to baseline. So yeah, don't miss doses, it's not worth it!!

I feel I've rambled too long, but hope you find this place as supportive as I have

Lex - xx