Newbie to the gang

Hi

Just found out after 4 months all clear that a new Larry has grown and decided to have a party in my remaining lymph’s and get the liver and lungs involved.

I have TN and had a lumpectomy chemo and radio after diagnosis June 21. A year and 3 days later I’m re diagnosed but with secondary.

Wow I never thought I’d join this club, always live in hope and kept positive. Now I feel lost. I’m 42, no children (my partner and I wanted to start last year but cancer came). Haven’t done half the things I want to and now this. What total BS. Most of all I feel bad for my elderly parents. They have their own ailments and now have to help me again.

Seeing oncologist next week for a plan. 

Is this copeable/liveable? Can I crack on with life with not too much interruption? Any advice is welcomed. 

Xxx

  • Hello Laz79 

    bless you I was diagnosed last year September with breast cancer and 3 weeks later was told I had secondary bone cancer it’s been difficult but I found a few things over the last few months that might help you There is a forum for people with secondary cancer and I have found this really helpful it’s called secondscount the lady Lisa who set this up also has secondary and is doing some amazing work I am not sure where you live but there is also a place called future dreams I have gone there for a few workshops on nutrition and also found there website quite good there are a few podcasts that I listen to and have found helpful.

    there is a lot of wrong information online so I’d say context to people who have similar to what you have and slowly this new language will not be so overwhelming that’s been my experience I have been reading a lot and giving myself more knowledge I have moments where I don’t won’t to get up but I despite my head I want to live and I believe that every time I get a horrid cancer thought I tell myself I can heal 

    good luck you are not alone 

    take care 

  • Thank you Lightlove.

    I’m near Bristol. I’m trying not to Google as I know it’s a lot of American stuff and misinformation. I’ve been going through Macmillan to see what others are going through which is making me feel better. I do not want to be written off just yet. 
    I’ve told most my family and friends and today I told my partner. I feel for them more than me. 
    Im just going to try to keep busy and build my strength up ready for treatment. I’ve done chemo before so I know what’s coming lol. 
    Take care xx

  • Good morning 

    I found telling my family and son the hardest like you I found it easier to feel for them more than me It was jot easy keeping the faith I think is the most important when I get negative thoughts which I do and moment when I think why me I then think of others who are going through the same and living it’s so important to live and not allow this terrible illness to consume our happy moments I am learning to create happy moments again I am 7 months in to my diagnosis I have secondary so no cure but there are lots of medications they have for the cancer I have so I feel very grateful for that who knows in another couple of months there maybe another medication my oncologist said there is so much research going on let’s practise faith sending lots of love to you x 

  • I recently got a kitten I am not telling you to do that but it’s also really helped me 

    she’s so adorable  hard not to smile when she is snuggled up next to me 

    keep us informed of how you are getting on 

    1. Hi Kaz, I'm a bit like you and tbh overwhelmed with the secondary diagnosis after 14 years clear following breast cancer. Thought I was home and dry, but no, the universe had other plans. Got my diagnoses 2 years ago and was on Palbo /letrozole which has now stopped working and showing progression in the liver, spine and lungs. On Exemestane now and was hoping to start a trial, but apparently I'm not eligible for it, so onc is hoping to start me on Capecitabane in a few weeks. Here's hoping this works for another while, and fingers crossed there's something else when this ceases to keep things at bay. It's all really worrying not knowing what the future is going to bring, but I'm very thankful that there are still treatments available. Like you I have elderly parents and am the first born and my dad in particular really struggles with this so I tend not to talk about it too much but you're probably like me and put a brave face on. I try not to think about it much to be fair and just try to get on with living my life as best I can. I'm a single woman too with no kids and it can get a bit lonely, but reaching out on forums like this helps. Good luck with your treatment plan and way forward through this crock of crap.Sandra x
  • Hi Sandra

    Just totally pissed off really. There are so many of us it’s not fair. We didn’t do anything wrong.

    My folks are being brave like yours I expect. It’s easier not to talk about it. Just need to shut it off and crack on with treatment.

    I started paclitaxle yesterday so here goes it again. I was just tired but I’ve just started to feel cold. I’m usually hot! Lol. Temp is ok but old injuries are starting to ache. Oh how I didn’t miss this! Lol 

    If it’s any worse in the night or tomorrow I’ll ring acute oncology and get my arse in. Not risking a bloody infection unless I have covid, again! 

    Keep fighting babe. We’ll give this bastard a good crack.

    Im here to chat.

    Kirstie 

    xxxx

  • Thinking of you Kirstie. Hope the symptoms settle down. You're right, it is a bastard. Definitely do ring the hosp. No point in letting things get any worse. Covid really put us all on the back foot but I'm glad I had my vaccines before I got it! I managed well through it without much trouble. Xx

  • I ended up in acute oncology and they thought I had neutropenia but then run more bloods and they think it’s a tummy bug. Having antibiotics and going home.

    Im pooped xxx

  • Sorry Kirstie only seeing your reply now. As if you needed a tummy bug on top of everything! Hope you're feeling better now. Onwards and upwards Fingers crossedx

  • Slowly getting there my dear. Although I’ve pulled my stomach muscles from wretching so much the other night! If it’s not one thing it’s another. 

    xx