Stage 4 tn scared

Hi ,I was dx in jan 17 tn stage 3b with lymph nodes. Saw my gp in may 16 after finding a lump told it was a hematoma. Went back in jan 17 again told the same and that it was def not cancer but sent for scans .had chemo surgery ,chemo hardly touched it so my path results were 45mm lump from 50mm and 7/12 lyphnodes still infected .had radiotherapy to 3 areas.then 6 months of capcitabine finished Feb 18. scans looked clear and life was going ok .in Nov 18 I had hip and slight back pain bone scan in December on 19 th all clear .come end of Jan 19 pain was going down leg gp dx bursitis gave me steroid injection made no difference .but I tried to carry on with daily life was on naproxen and codine .pain was getting worse to the point I was getting bed ridden gp was doing home visits still said bursitis prescribed more meds .by april the pain in both my legs was something I wouldnt wish on anyone .it was all night long I couldn't even walk to the toilet .my mum was sleeping in chair next to bed and I spent my nights screaming into the pillow so my son wouldnt hear .gp just kept prescribing meds .first a and e visit  6 hours of me crying in a corridor them thinking blood clots .I screamed through a hip xray and it took four people and morphin to get me on bed for doppler scan both were clear sent home .week later new gp visited sent me back to a and e phoned my oncology team .again another 6 hour wait then admitted and doped up so I could sleep ,and have MRI was wrapped tightly in a blanket so i couldn't move as i couldn't lie flat .i had a fracture in my back and spinal cord  compression was close to paralysed. Ct scan showed nodes somewhere in back of abs and liver mets ...had spinal surgery 10 weeks ago and can hardly walk 5 mins so use wheel chair ...I'm so scared I'm on meds that exhaust me ,just started treatment and already had infection I feel to drained with zero energy to do anything my back is in pain and stif on one side so I cant cook or do anything mums do  .feel like my gp messed with my life twice .My mum is 78 and now my carer I have a 14yr old son at home and it breaks me just looking at him as losing me will totally devastate him and he seems to of buried his head in the sand  he carrying on as normal,its if we dont talk about it it's not happening I dont think he believes I'm going to die soon  ,I saw on paper it said a yr least  .I also have a 29yrold who lives away .I'm so scared of dying and leaving my boys 

  • Figarjo

    i am so sorry to hear what you have been/are going through. I find it difficult to find the right words on what to say but I didn’t want to not reply when I read your plight - hopefully others will be along soon to offer support.x

  • MagpieMaggie thank you for your kind response x 

  • Hi Figaroj

    I am so sorry for what you have been through and the way the systems let you down. The hardest thing is knowing you have to leave your kids. I have secondary bc with bone, liver and omental layer mets. I have a son age 20 and a daughter 17. Breaks my heart. I'm on chemo atm get scan results next week. I really hope you can get some respite from pain and many times the docs have got it wrong you may have much longer. If you need to talk just message me. Xxx

  • Hi shellbell10

    Thank you for your reply .Are you tn ? Also what chemo regime are you on and have you been stage 4 long ? I'm currently on tecentriq and abraxane, totally exhausts me .six weeks school hols and I feel so sad I cant do the things I want to with my lad and go to places we used to ,cause I feel so off and tired constantly.I worry about driving my car so will only go 5mins to the shop if I need too .trying to get my tablets cut down cause I seem to just sleep .I hope your scans give you good results maria xx

  • Hi Figaroj

    is to triple negative? If it is, no I'm oestrogen positive. I've been stage 4 for 3 years, got dx 2 years ago but had pain in my ribs for a year and docs kept telling me it was costocondritis. I'm on epirubicin ( I think lol ). I get it once a week for 2 weeks then a week off. I'm the same, we used to go all over but hardly go anywhere now. I'm so tired all the time and been really depressed lately. Think steroids haven't helped only had a 3 week course but they've knocked hell out of me. Gave me them cause I was getting pain from my liver and it was inflamed. I hope you get chance to get out a bit. Where are you from? Thank you, I will let you know when I get my results. My names Michelle. Stay strong Hun.xx

  • Hi I'm on 3 weeks on one week of ,so my bloods never get a chance to recoup .I think the fatigue worries me as never know if its cancer related or treatment or all the pain meds .Tbh if it hadn't been for my back I'd never known about my nodes or liver ,I dont know if it's in any other bones other than where I had my op and I'm too scared to ask ,and my letters confuse me .I keep trying to get on with things but find I'm counting down the days to that year point .I'm scared of leaving the boys and how I will go in the end .it never seems to leave my head ..I'm down in bagshot in surrey how about you x 

  • Hi it's eribulin that I'm on. I'm the same, so tired all the time, don't want to get out of bed. Don't want to go anywhere. Had a day out with the family last week and it was lovely but other than that haven't left the house for 2 weeks. Cancer is in all my bones and my spine. Not looking forward to my scan results next week. More worried it's spread in my liver more. Try not to think about that year because most of the time they get it wrong. I know it's easy for me to say but it will only get you really down. It does take over you I'm so snappy and moody all the time lately. Just feel depressed. That's all I think about too, what will my kids do without me. My husband is amazing though, it will hit him really hard. He's a big tough guy and he's a bouncer but all he does is cry lately over me and that's not him.  Why don't you see about getting some counciling, it might help a bit. Really feel for you, hope you pick up a bit. I'm from middlesbrough. Xxxx