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Am I positive or burying my head in the sand?

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Re: Am I positive or burying my head in the sand?

Glad you’re feeling better Jennie. Best thing to do is keep active and moving forwards - that’s what I find anyway. We all have those moments but I don’t think it does us good to dwell. It won’t change anything and just ends up making you feel a bit rubbish. I’ve been out on a walk this morning to enjoy the sunshine and breath in the fresh air. It always lifts your spirits. And I’ve heard of lots of ladies doing well for years following a mets diagnosis. I just go with how I’m feeling right now - I can manage my treatment plan (Zoladex, Letrozole, Denosumab and palbociclib/ Ibrance) and most days I feel pretty much like my normal self. Hope you have a good weekend ladies xx

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Re: Am I positive or burying my head in the sand?

Wow thank you for replying from your holiday. Hope your having a brilliant time. Yes I've been told to treat it as a chronic disease too. I've spent the morning sorting out my wardrobe and draws and throwing Lots in a bag for charity. Always a good thing to do to clear the mind too. Now I'm off for a walk. Feeling better again. Thanks for your support. Love 💕

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Re: Am I positive or burying my head in the sand?

Hi Annie,

I haven't been diagnosed with SBC, but I've got a feeling that I'm going to be when I see my consultant for my scan results next Tuesday. I've been diagnosed with bc recurrence and so have just had staging scans before I have a mastectomy. After I had the bone scan, the technician said she needed to take 3D images on a 'funny bone' in the chest/spine area the doctor wanted to have a better look at. I'm now thinking the worst and convinced that the cancer has spread to the bone. It's so good to read your reassuring message to Jenny because I'm worried how I will cope if my fear is correct. Your posts are always so upbeat and treating SBC as a chronic illness does sound better x

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Re: Am I positive or burying my head in the sand?

Hi Jenny, I’ve got the same diagnosis as you, the same response from my Onco ( lots of tricks in his little black bag) and have been going along very nicely for a couple years. My disease is well controlled, even if SEs are a bit wearing. The Ibrance means my neuts drop, so I am extremely susceptible to any colds etc. Winter months have been especially fraught. However, my philosophy in all of this has been to take one step at a time. I dont read threads on popping my clogs until my Onco, heaven forbid ,tells me. I have never asked a question I didn’t want the answer to, and I have never, ever googled. I do read the positive stories on here, and I do try and support members in need. We all need a virtual hug 🤗 at times. I think you have to believe your medical team. Your success is their success, and new BC treatments are coming along daily. I keep faith with my SBC lead who tells me to treat my disease as a chronic illness, much like TB, and to live life as I want to. So, sending a virtual hug from my holiday apartment before I wobble off for a swim. X

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Re: Am I positive or burying my head in the sand?


@nicky08 wrote:

Hi Jennie60

Sorry to hear you are feeling so down this morning. Sometimes reading about other people’s secondary’journey’ isn’t helpful, sometimes it is. Unfortunately due to the nature of this forum you will be confronted with more stories like this than you would in the real world. I think also after the initial shock of finding out you have secondaries you start to cope with it all once a treatment plan is in place but then the reality of the situation can also hit you as it sounds like has happened to you. It’s completely normal to feel like this after all we’ve all been dealt a rubbish hand and we are entitled to feel sorry for ourselves! However there really are lots of treatments and daunting though some of them see we do seem to cope with them. I have now been living with bone mets for 12 years, the last 6 of those with liver mets as well and my main way of coping is to live for the moment. Don’t think of the what ifs, grasp each day and enjoy it, give yourself a mini treat or plan something however small to look forward to. Everyone’s own story is different from the next persons with this disease so don’t think that just because someone else’s situation is going one way that yours will have to. That is something I have definitely learnt over the last 12 years! 
I hope this might help you. Try and pick yourself up today and plan something nice with your family over the weekend. I hope you feel more positive soon.

Nicky x


Dear Nicky

I am finding myself in similar position.  Diagnosed with secondary in T-9 Vertebra only this last December.  I was hopeful that SBRT could be given to cure this however because of spinal cord compression had to head for conventional radiotherapy as an emergency.  Should say my primary was March 2015 - stage 1.  Had surgery, chemo and radio.  Was almost at my 5 year bench mark. I feel i am mourning the loss of my stage 1 and that is it for me.  Learning that there are people like you with 12 year survival lifts me. Treatment now is swap from Tamoxifen to Letrozole which i have already started and Monday i will commence Ibrance 125mg with injections of Denusomab every 3 months to strengthen bones.  I am hoping to restart work early next month but concerned i will not be emotionally fit, especially that i work as a medical secretary and have to deal with sick people.  The uncertainty of how Ibrance is going to affect me also concerns me.  Have you taken Ibrance yourself?

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Re: Am I positive or burying my head in the sand?

Thank you Nicki wise words that I really needed. I've been really good overall. But like you say sometimes it just hits you and down you go. Im lucky to live in a beautiful part of the country so am planning a walk later by the sea. That always helps. Thanks again. Take care. 12 years and 6 with mets to liver gives us all so much hope. Love 💕

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Community Champion

Re: Am I positive or burying my head in the sand?

Hi Jennie60

Sorry to hear you are feeling so down this morning. Sometimes reading about other people’s secondary’journey’ isn’t helpful, sometimes it is. Unfortunately due to the nature of this forum you will be confronted with more stories like this than you would in the real world. I think also after the initial shock of finding out you have secondaries you start to cope with it all once a treatment plan is in place but then the reality of the situation can also hit you as it sounds like has happened to you. It’s completely normal to feel like this after all we’ve all been dealt a rubbish hand and we are entitled to feel sorry for ourselves! However there really are lots of treatments and daunting though some of them see we do seem to cope with them. I have now been living with bone mets for 12 years, the last 6 of those with liver mets as well and my main way of coping is to live for the moment. Don’t think of the what ifs, grasp each day and enjoy it, give yourself a mini treat or plan something however small to look forward to. Everyone’s own story is different from the next persons with this disease so don’t think that just because someone else’s situation is going one way that yours will have to. That is something I have definitely learnt over the last 12 years! 
I hope this might help you. Try and pick yourself up today and plan something nice with your family over the weekend. I hope you feel more positive soon.

Nicky x

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Member

Am I positive or burying my head in the sand?

Hi everyone I've been feeling as positive as possible since diagnosis of secondaries in October last year. The oncologist said he can treat me for years and medication is going well and although theres some fluid on my lung to be concerned about liver is stable. Last night I was browsing this site and began to read a thread about preparing for the future and I felt so down. Basically I should be planning my funeral! Don't get me wrong I'm aware of how serious secondaries are and have thought of some final details, but I'm trying to get on with life, enjoy my time with my lovely family and feel hopeful. Sorry just felt so sad and lacked hope last night! 

 

Love to all 💕