Thread #6, living with incurable cancer, taking ALL the drugs, and remembering our fallen comrades

[SewingBees]

New thread!

York is lovely 😊

It really is!

I’ve been up all night with the runs and steroids. Supposed to meet my friend in the morning but who am I kidding? My family are telling me to look after myself and not to make plans.

@EachandEveryone at least you have good friends and family. I feel abandoned.

I’m so sorry xx if you ever want to meet up for a coffee/ wine/ whatever the fuck is to hand please tell me. I don’t think we live too far apart. I’m sorry your ‘journey’ (wanky name) is so shite. When do you get your results?

Morning! Just wanted to share as I've had a bit of good news.

My Oncologist's telephone consultation on Monday very quickly turned into a "we want to see you NOW TODAY, no arguments" conversation after I'd been describing the spread of my pain and inflammation to him, even though I had very little pain or inflammation when we were talking. Anyway, long story short I spent the afternoon/early evening in the Oncology SDEC being prodded and poked, and feeling like a bit of a fraud as I felt okay for me, wasn't flaring, just very tired as usual. They decided to do two CT scans which found that some of my affected lymph nodes in my torso had either shrunk or gone back to normal size, not all of them, but a win is a win. No changes to my neck (win?) or the tumours (win? bit early?) and a new most probably non-suspicious growth in my liver to join the one that was already there (at least it's got company).

I'm over the moon. Started my third cycle/month of Ribociclib yesterday but I just have a new positivity about it all over again and will continue to kiss the box for luck every day before taking them as that obviously is the magic that makes it work 😀

They think the increased pain and inflammation is my body continually fighting a low level infection and to contact them immediately if it gets bad again, which is fine by me as at it's worst I thought it was the cancer creeping upwards and into my face. I've had a referral to the lymphoedema clinic too as one arm is affected.

A nerve blocker had been added to my pain management list (begins with a G?) so will see how that goes. They won't release me into the wild yet so I have to continue with fortnightly blood tests and monthly face to face consultations again which is a PITA as it's a 40 mile round trip for both.

But, my affected lymph nodes are shrinking already!! Yay!

@EachandEveryone did you manage to meet your friend or did you have to reschedule?

@Enigma53 I am so sorry that you are unsupported at the moment, I can't offer a meet up as I live too far away but always happy to chat on facebook if you want to message me (Mumsnet messenger is too tiny, my squinty eyes can't see the text properly on my phone).

@Enigma53 where are you?

I cancelled on the friend as I need to be near a toilet at all times.

just waiting for the consultant to ring. He rang earlier but the volume on my iPhone is rubbish. I am concerned about a lump I can feel and I’m interested to hear what he says about it.

i don’t know about immunotherapy being gentler than chemo. It’s really knocked me for six. Has anyone else stopped being paid by work? I’m having to take a grand a month out just to cover myself. My savings are drastically going down.

my cleaner never turned up yesterday and I was heartbroken! I just can’t get on top of things since coming home from the hospital. She changed the beds and waters the plants and I pay her well. I just hope she is ok as she would usually text.

@EachandEveryone I'm just going through a claim for ESA as I'm unable to work at the moment, I've already filled out the medical form which they sent around week 6 (if you have cancer it's very straightforward), it's taken 8 weeks but I finally have an interview with a Back To Work Advisor (that's a joke) on Thursday, which is part of the process but seems a waste of both our times. After that it will be an interview with a medical assessor and then presumably I will be put into the support group with no expectation to look for work whilst I continue to go through treatment/have mastectomy etc. The DWP say an advisor should make contact within 10 days and when I queried it after a month, thinking I had messed something up I was told they are running behind, but I wasn't expecting this length of time. I haven't received any kind of payment not even an interim one yet. You can claim online, all the info is on gov.uk.

@EachandEveryone is it possible your cleaner is on holiday and you missed the message as you have been so tied up with everything else? Can you call her directly?

No she read the WhatsApp messages and never replied. She’s gone on holiday today.

a mixed consultation I have to say. He said I’m responding to treatment but couldn’t say if the new lump I feel is an inflamed lymph node or not. He thinks it is. He said we have to hold off now until I finish my steroids in three weeks and we are on top of the colitis, he will drop one of the immunotherapies that causes it, I’m sad about that but he said it makes no difference.

so that’s that until mid September.

Morning all.

Do any of you recall the poster Okitsme posting a few times?

She has a thread running in chat asking what to eat - she's been given weeks 😥.

I had a telephone call from Oncology yesterday - put me in a bit of a panic "yes, what's the matter?" Nothing just checking in ffs 🙄. Without an appointment or any warning? Nice that someone thought to check in since they pissed about calling at the wrong time, several times, weeks ago. Not good being on the receiving end of an unexpected call!

Anyway, all good bloods wise. Creatinine's a bit high - she said down to the Abemaciclib, I actually think down to less water intake. I've noticed I've drunk quite a bit less while not at work, so will up that again.

2 house viewings today - cross everything!!

Dd1 needs to sort uni accommodation - not getting anywhere fast. Work will be so pleased if I need time to move her and us 🤣🤷‍♀️

Where did she decide to go? I hope you like one of the houses.

im being brave and getting my hair cut today.

Gosh that's sad

@SweetWilliam69 have a look for "Storm Part 3" it's for partners/family - they'd probably be more helpful to you. It's about 4 threads down from this one.

Fwiw, I think I'd want to be there, rather than a different country if it were a family member of mine. A whole different country is too far, I think.

How is everyone? My neighbour told me today she’s been ‘keeping an eye on’ our wheelie bin. She told me she has made an excel spreadsheet documenting how long our bin sits out after the bin men leave. Currently the average is 8 hours. This is unacceptable and we are bringing the tone of the village down 🤣🤣 I laughed in her face

🤯 8 hours!? How very dare you @sellotapechicken 🤣

Ours has gone out this evening...it'll come in at some point after being emptied. Maybe it'll get all the way to it's living place in the back garden...it'll probably live in the front til Saturday on my way out with dd1 🤷‍♀️.

Currently sat in a&e bleeding ☹️

@sellotapechicken your neighbour
is a twat with bells on!! A spreadsheet?? WTAF?? 🤣🤣

I know! She’s a giant twat! 🤣 sending you positive vibes for A&E

Like most people! 🤣

I’m up at 4am. Rubbish day for me as well. I’m lucky my neighbour does mine but I have loads of recycling so next time I wake up I might put it out. I also should make it my job to do all my paper shredding today.

Yep, awake here too! Being kept in for obs. Tranexamic acid seems so be slowing the bleeding. They wanted to get the speculum out; NOT A HOPE IN HELL!!! I’m guessing bastard sarcoma is in some blood vessels. Buggar it, i mm having cake and hot chocolate. The speculum can wait ( head now firmly in sand!)