What next?

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I just had MRI scan yesyerday and got called back in a couple of hours later. Then told I had secondary bone cancer. I had breast cancer in 2015 and went well at time. Been complaining to GP for a 15 months but she never checked me for cancer even when my clavicle fractured by climbing into dentist chair. Back pain drove me back twice but still did not consider cancer. I am still in shock. Waiting for CT scan but I am so scared that because it has been so long it will be really bad. Been awake since 2am. Even started to clear out clothes so my husband won’t have so much to do. Got a special needs child. I am her full time carer and partially home schooled. Feels good just to write this. 

  • FormerMember
    FormerMember

    Hiya, your head must be all over the place right now! I was exactly the same as you, I had breast cancer back in 2012 and then 2017 after nearly a year of back and forth to gp i eventually was given a scan and then had the life changing news that it was back. Mine is also my spine ( quite a lot of it and a few other places but all bone) So here is you and I and many others back on this rollercoaster of a journey. 

    It’s normal for you to feel like you do, I used to look at my pots and pans and think your gonna be hear in a few years but I won’t! And sit and cry and then I think of my children and it broke me into a million pieces, it’s understandable to feel grief, anger and everything else but so hard to process it all and move on with your day.

    i just want you to know all the positive things now, as in the treatments etc, they will be a lot of scans and blood tests, this will be forever... the treatments for this are very good now and people like us are living longer due to these treatments, I’m taking a chemotherapy tablet each day and I’m feeling great! I take them for two weeks and have a 7 day break, it was a rocky start till your body gets used to it and I feel amazing now and most days I don’t even think about it or feel like I have cancer, we are all so different so don’t expect to feel happy or ok, you’re feel how you want till you have spoken to your oncologist and understand what’s going on and what’s to happen, ask lots of questions, if you can’t get the answers pop on here and ask one of us and we can point you in the right direction or answer from our experiences, but it’s ok to be sad, mad, etc, or whatever you feel but I try and be as positive as I can and it’s really helped me, I’m actually laid here in bed cuddling my 5 month old grandson after having him sleep over, my two grandchildren make me forget a lot of things and I just try and stay happy and positive as I can, I’m always here for a chat. 

    Much love and a big hug, Jo xx 

  • Thank you so much for sharing your experiences. I cried reading it but at the same time I don’t feel so alone now. I am being strong outwardly for my family.  With my daughters special needs I have to fight for her all her life. One of my thoughts now are will I see her turn 16. It is when I think about the future, I cry in private. 

    This last week I was feeling so much better. Doing yoga and pilates and losing weight at Slimming World. I’d put weight on not lost it. I even just started to believe the medics who kept saying it wasn’t cancer. Should have pushed harder sooner like I do for my daughter. 

    She is a great hugger and will be keeping my mind busy like she did the last time. Last night was hard but made it through. Actually I looked for a nutritional specialised in cancer, not in curing but eating and supplements to help the body cope. I have been on supplements from my own research for a while. Time to get support I feel. Always been interested in nutrition.  

    Daughter calling me to get up so will finish x

  • FormerMember
    FormerMember in reply to DiAne550

    We always leave ourselves till last because we are mothers, when you have time google Kris Hellenga her story really inspired me to believe in myself and that I’ve got this I can cope if you know what you mean, I follow her in social media like Facebook or Instagram, it makes me feel lucky that I’ve had more life experiences that she can never have, it just sort of put things into perspective for me. 

    Im hoping your feeling a bit better, but yes have those tears they need to come, I also do my crying in private as I can’t do sympathy very well, I just keep soldiering on. Hope you get to see your oncologist soon and if your feeling nervous get the person your going with write down some questions you want to know and while your there write the answers down as sometimes it becomes white noise as your brain can’t process it all and then at least you can read them at home when your feeling a little bit more you. 

    Much love Jo xx 

  • Thanks for the advice Jo. You are right about the white noise. I have had to ask them to repeat info a bit. 

    I watched an elderly person going into a shop and all I could think was, I thought I would get to your age two days ago. 

    I got a call earlier from an oncologist at a different hospital. She say I need to start radiation on my neck ASAP. So I go in early tomorrow to sign the documents. There is another one but that is not being treated yet.

    Just started to take steroid anti inflammatory which is helping.  So tired but I was awake most of night. Got family round to entertain my daughter so am taking a rest.

    I have lost my appetite but trying to eat something.

    Much love to you Jo xx

  • FormerMember
    FormerMember in reply to DiAne550

    You sound just like me! I look at old people and think the same, or will I get to 60, I’m 51. 

    Good luck with your radiotherapy and I’m glad your family is around for support, take naps when you can, your steroids may increase your appetite but I have little or no appetite so it’s common. Enjoy the rest of your day, chat soon or whenever you need to vent I’m here, Jo xx  

  • Your words help me.  I am having moments and thoughts, not very nice.   Like grief, jealousy, self pity,  Then I just feel guilty about feeling that way and tears flow.  I am surprised I am sharing this as I feel ashamed. 

    I am resting in bed.  Family gone.  Thundering headache, nausea, lower backache and I am having trouble passing a stool (not usual for me).  Very hot and sticky but could be the stillness of the day.  I looked up the steroid which could account for first two.  Just second dose of 16mg at 2pm.  Any wisdom Jo?

    DiAne

  • FormerMember
    FormerMember in reply to DiAne550

    Don’t ever feel ashamed for feeling shitty and sad and especially sharing this with us in here, that’s what we are here for, moaning, anger, sadness, happy thoughts but most of all laughter and you will feel these feelings again it’s just raw at the moment and your feeling numb, it’s all so different second time round because you know there is no cure, but remember I said there are brilliant treatments available! Are you in the uk? 

    What are the name of the steroids your taking? 

    Jo xx 

  • Thank you for the understanding comments  That is helping me maybe more than you know  

    Yes I am in UK. Steroid is dexamethasone.  I have 16mg to take today then drops to 12mg tomorrow for 4days.

    Just had worse night but managed to sleep more of and on. 

    Neck aches, behind front ribs, very hot and perspiring, sore spine, sore throat, still got headache.  Didn’t really find a comfortable way to sleep. When I took bed covers of I would shiver so put them back on and get hot again. 

    Seeing oncologist briefly today. Will mention it to her. Feel I could stay in bed all day and sleep.

    speaking of laughter, I tried to find a comedy film. or TV show last night to go to sleep with that light feeling. Couldn’t find one. Any suggests?

    Much love DiAne xx

  • When do u take your Dexamethasone? They'll help keep u awake if u take them at night.

    I only take 0.5mg / day now but have always taken them with breakfast

    Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
  • Yes. Knowing I can start to manage it. 

    2pm re the steroid as it was 12 hrs after I was given it in hospital. Will ask to bring it forward. Sounds a good idea. 

    Thank you