Thread #5 for those living with incurable cancer, supporting each other and remembering the lovely friends we've lost along the way

[SewingBees]

New thread, an open invite to anyone living with Stage 4 cancer to share your worries and joys and just generally chit chat about whatever you're going through today x

@Enigma52 it certainly feels like some sort of lurgy! If I'd realised how rough I'd be yesterday, I'd have skipped the gig & let the girls go without me...sorry Leeds Alessi fans...the lurgy's my fault 😥

@Enigma53 Ah yes I remember now you work at a school and they weren’t being very nice to you!

@EachandEveryone @Enigma53
I have the district nurses in twice a week as I’m able to clean and dress them. Can’t be bothered having them in every day tbh.

Am thinking about getting a cleaner, even just for an hour a week to do bathroom, kitchen and dust living room. DH does not see the need for the cleaning that I see!

Gorgeous weather here in Scotland the last few days and again today.

I have mine for two hours and it is a game changer. I also send my washing away now! With this leaking the bedding needs changing a lot.

@EachandEveryone yes I think it’s something to seriously consider. I sleep on puppy pads now as although I have bilateral nephrostomies I still pass a little urine normally- unfortunately I can’t feel it happening. What a fabulous life we lead eh!

Oh my. What a night! The pain in my buttock and groin was insane! I don’t think this chemotherapy is working 😢 I’m not ready to die yet 😭

Its so difficult isn't it you have a very stressful week with lots of appts don't you? I will be in your position soon with a scan after cycle 3 which will tell us which way things are going. My husband and I spent last night in tears about my future and also having to prepare my son.
I have no words of advice but lots of love and solidarityxxxx

@Florsilvestredelcampo it’s brutal. Why us? What have we done? Nothing!

Sending huge amounts of support and empathy to you all too. It’s a truly horrid journey x x ❤️

Tomorrows chemo delayed due to the mucositis. Scan on Saturday and results on Tuesday. If stable, we carry on until the end of the 6 cycles. Then it’s 3 monthly scans. Chances are it will grow back and that will be that. If it’s not stable, we ditch doxorubicin and start a new chemo.

All a total headfuck!
I can’t even look at people right now.

I’m sorry @Enigma53
Headfuck is right.

I had a call with my Consultant today - thought I was doing really well. He’s not as positive. Doesn’t rate Ca125 as a marker for cancer. I do appreciate that, but it’s down a lot and I thought that must be good.
I think the worst bit was when he said ‘cancer only goes one way’
They pride themselves on their honesty too much
I mean - why even try, then?
Thought being positive was a recommended approach to this situation

Do you think they measure Drs psychopathy traits before they let them be oncologists?

Sorry Dr X. You have an ounce of humanity - you can’t be an oncologist.

@RedRosesPinkLilies “ cancer only goes one way” !!!! Another total head fuck!

No words, huge “ sigh” 🙈🙈🙈

That’s a horrendous thing to say. I’m so sorry.

Fuck me, that's brutal! I'm sure we all know it's going one way...there's no need to be a dick about it!

@RedRosesPinkLilies I'm sorry he said that to you.

@lucysmam Thank you.
sometimes you have to say to others to
understand it’s not on. I appreciate the camaraderie x

@Enigma53 yes headfuck is exactly what it is.
I'm sorry you are experiencing all this.
I hope things improve and wishing you all the best for your CT scan.

@RedRosesPinkLilies wow, your consultant is an arse to say that to you.
I like a bit of honesty, but come on, some positivity would be very helpful too.
I'm sorry you had to listen to that.

@Whatevershallidowithmylife a cleaner sounds like a very good idea.
Anything that makes life easier and gives us less anxiety can only be a good thing.
I hope you are able to enjoy this lovely weather we are having at the moment.

@Florsilvestredelcampo just wanted to send you love and a hug after reading your latest post. Xxx

Just wondering if anyone has heard from Herbal yet? I do hope she's OK.

I had round 1 of cycle 17 yesterday.
I felt like crap afterwards and still not feeling great this morning.
Despite the beautiful weather, I think I will have to stay in and rest today.

Love to you all xxx

@GoldenDog1 - hopefully Dr oncologist’s negative outlook will come back to bite him when he gets his own diagnosis

Ive managed to mentally put him back in his box- thanks to real life and online friends (this chat, basically)

My Ca125 is up ever so slightly today - but it will be the trend that matters

And anyway no one is immortal- just need to focus on the good bits of life.

I think it's really important to have a good relationship with your oncologist and to be able to trust them. I changed oncologist soon after my stage 4 diagnosis - my original one had failed to flag that the joint pain I was experiencing could be the cancer returning (even though it was in a very common place for BC mets) and assured me that I was postmenopausal when I'd had a period 4 months earlier. I didn't like her and I didn't trust her.

My current oncologist is very experienced but quite abrupt in his manner, but he answers all my questions thoroughly and shares his frustrations, eg when scan results aren't reported for 3 months. And when I told him I had separated from my husband and was going through divorce as well as cancer he was incredibly sympathetic and told me I didn't need that additional stress.

His manner suits me, but wouldn't be right for everyone. I think it's worth asking for a change if you really don't get on with or trust your oncologist. They are such important people in our shitty stage 4 lives.

Unfortunately I think it’s just him that does my type of Ca. - Aberdeen is not over supplied with Drs
I think he’s a good enough Dr, but poor manner. But I suppose his negativity keeps me balanced in my outlook.
I am glad I don’t see him very often

My oncologist was lovely but too chicken hearted. I had to get the head nurse to be brutally honest about what was going on and she agreed he was possibly in the wrong job. To me, withholding information is just cruel.

I’m meant to go to see gynaecologist for unusual bleeding. Being in the position where there’s no treatment for me now i can’t imagine they would offer any treatment if the cancer has spread to cervix etc. The thought of tests and scans and waiting for results fills me with absolute dread. I am going to postpone it rather than cancel as maybe need to put some more thought into it.

On the plus side, the decorators come next week to do my bedroom- nothing exciting just freshening up paint and varnish but am treating myself to new roman blinds so rather excited about that.

Suns come out in Scotland today again, this weather has been so lovely. Anyone wants a hug here it is 🥰 or if you’re choosing violence today that’s ok - punch here 👺 x

God the palliative pain nurse just called to ask if the DmT is working I don’t think it’s touching the surface but she’s worried that im
taking too much Oromorph on top of it and wants me to
keep a diary. I won’t be. She’s also sending their consultant to my house which I really don’t want. I hate how people just come to my little flat now I feel like I’m being judged all the time. I’m still waiting for the district nurse to come all the others come between 1030-1130 which is great as I can at least have some life around it but when they don’t turned up I know exactly which one it will be

@EachandEveryone I hate it when various people presume you're ok with a referral to this, that, and the other. Actually, no, I don't want anyone else to add to the list of "professionals who annoy the fuck out of me & make stupid small talk", no thank you...of you fuck. I'll let you know if I change my mind.

Hanging around waiting also irritates me - I have things to do...I'm not at your beck and bloody call!

I'm annoyed on your behalf! They all forget we're still people with lives to lead 🙄🙄

@SewingBees yes I agree.
I also think having a good relationship with your Oncologist is important.
My Oncologist basically has my life in his hands.
Unfortunately, I don't feel I have the same trust with my new Oncologist as I did with my previous one.
Yes he's nice and I would go as far as to say, he's probably a bit more experienced.
However because I'm now on 'extra chemo' my previous Oncologist would see me after every cycle to check all was OK and he wouldn't even have considered a telephone appointment.
We didn't always agree on everything, but he listened and would take into account what I was telling him.
I feel like I had a good relationship with him.
I don't know this new Oncologist at all.
The appointments are much fewer, and the last appointment was by telephone and lasted about 3 to 5 minutes.

Not much I can do though, as my hospital is extremely limited with Oncologist who specialise in my cancer, especially now my previous one has left.

Morning all, how's everyone getting on?

I'm finally coming out the other end of this delightful fluey thing...just in time for the electrics to be rewired this weekend & back to work on Monday 🙄. Poor dd1 hasn't done much with her first week of half term thanks to me being unwell. She wants to head to town today but I don't think I want to spend the day walking round & wear myself out.

I’m sweating so much I’ve never had anything like it I’m hoping it’s just a side effect on the immunotherapy. It is a beautiful day I just don’t have the energy to do anything. I can’t believe you are still managing to work it’s amazing. I’m dreading it if I can’t go back in some shape or form but until this horrible wound goes o have no chance.

Pan! anyone heard of a hysteroscopy?

@Whatevershallidowithmylife I’ve had a hysteroscopy twice.