Thread #7, living with incurable cancer. Taking ALL the drugs and remembering our lovely friends

[sellotapechicken]

The other thread was full! I am waiting for the oncology assessment unit to decide what to do with me tonight. I keep spiking temps but it goes after paracetamol so they can’t decide if it’s a reaction to immunotherapy or not..

Hoping this works!

@SewingBees No need to apologise to us. I’m sure there is a lot to take in and you are feeling pretty overwhelmed ( or perhaps at peace even? )

How do you feel in yourself, physically? I do hope any pain you are in, is being well managed?

How is your daughter coping?

@SewingBees you will both continue to stay firmly in my thoughts during this tough time. 💐

I’ve just had my CT scan. Not feeling optimistic, given the increase in pain of late. Will find out more on the 11th august

@SewingBees I am so upset to hear your update. I will be thinking of you in the weeks/months to come. It is a massive reality to come to terms with, even though we all live with the knowledge of where stage IV eventually leads. I hope your palliative team can make you as comfortable as can be. As for your DD and family… Such a sack of shit for everyone.

@Enigma54 Hoping your scan is stable/good. I have just got a date for my next one, 4th September. Exactly a week before my 54th birthday. An early birthday 🎁 for me. Is it just the level of pain that you think has increased? How are your bloods, do they give any indication of what may be happening?

@SewingBees You and your DD have been in my thoughts lots. Totally agree with @balkanscot this really is a true sack of shit. The unfairness is off the scale and how It affects our loved ones. We all know which way we’re heading, but honestly, the reality of having to live with that knowledge, is brutal.

@balkanscot I will have everything and anything crossed for your next scan. You WILL be stable and the next and the one after that! The fecking beast can just feck off!

My bloods don’t reveal much re: the sarcoma. I just know my pain is worse and that is scaring the entire shit out of my head! I also wonder how long before BC takes hold and then it will be a case of which one wins! It’s just hideous.

Sorry for the gloomy post.

@EachandEveryone I do hope you are at peace now, wherever you are 💐

@Enigma54 Thank you! I am SO wishing the pain you are experiencing is not connected and that the scan can give you another 12 weeks of living. I know what you mean re: pain. I think no matter how many visits to Maggie’s/MacMillan/onco-psychologist, the visceral feeling is always there, that pain equals shit. As soon as I get a whiff of any pain/discomfort the thoughts just keeps swirling around. My brain thinks that because the only thing I want I can’t get (to get this shit bastard out of me), so no point in “sitting with it” or whatever other advice is. I wish I could be more zen about it all but all I seem to do it butt heads with it. All. The. Fucking. Time. With minuscule pockets of break in between.

Just came back from a weekend in Dundee. DS and I both love it there and we both feel bereft coming back to Edinburgh where the Festival crowds are seriously ramping up. I hate August in Edinburgh and wish I could spend the whole month somewhere else but alas, Scottish schools start in mid-August.

@balkanscot I hear you and for me, pain inevitably does mean shit! I’ve tried telling myself that I can’t change a single thing about this disease, but even that doesn’t work!

Glad you and DS had a good time in Dundee. Maybe we just all need to get away more often?! Since the reality of medical retirement has hit, I’m wondering what the hell to do now. Spend lump sum on holidays or give to kids for house deposits ( they do each have a pot of cash from DP’s side).

@SewingBees I do hope you and DD are being looked after. 💐

This thread is quiet now, but I think of you all regularly.