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

[SewingBees]

New thread!

Sorry - my message about the cancer growing into my bowel is really about my future - which is not good. Right now I have passed a small amount of 💩 and I think it’s made a difference. I don’t feel as unwell just now.

Not going home yet (as in discharge), I was home on pass- but was miserable more of the time.

Too much to text here, but I’ve had a few messages from very close relatives (my mother) minimising what I’m going through. Like it’s a gi bug. Unbelievable and incredibly frustrating. I’ve now re-earned my family rep for being difficult because I’ve explained about the cancer growing into my bowel.

@lucysmam I hope you get things sorted.
@sellotapechicken You’re a useful woman to know!!
@Enigma53 - yeah!! We can keep each other company. I’m teetering too. Xxx

@RedRosesPinkLilies a gi bug? WTAF!😱 Are they for real? I’m shocked.
Yeah, stay close, we have each other. Good you passed some 💩👍 That is my soul purpose of my day ( most days!!) 🤣 Cancer has turned me into a bowel freak!!

@Enigma53 it is shocking. My family is super dysfunctional, but yesterday I saw my aunts and mother behave the same way as my sisters and mother. I thought one aunt in particular was above that. It was pathetic

We were joking that at my funeral DH and the boys are going to go round saying ‘she told you she was ill’’.
Since some don’t seem to believe me

@RedRosesPinkLilies That is so terrible it's almost funny.

I too am bowel obsessed, mostly because of the bunging up side effects of morphine. I'm looking forward to getting into a normal routine once I'm off the morphine.

I had a good sleep last night but woke up with sore hips, but I think it's because the mattress is too soft for me. I'm going to my mum's tomorrow for a night, then home on Thursday.

Just been for a short walk, it's a lovely day here in the north York Moors where my sister lives. But I'm looking forward to going home and having a cuddle with my lovely daughter and seeing the dogs.

@RedRosesPinkLilies I’m truly in shock at how some people react, particularly some family members. It’s actually very sad. You have your DH, children and understanding friends. In the words of my teen son, you need to “ bin off” those who bring nothing to the table to make you feel better!

My brother appears to give less than a 💩 too. Very self absorbed, never had a serious health issue ( ever!!) and to reflect this, I receive the occasional
“ keep going sis” message! Well, I can’t keep going forever, bro!!

Bloods today. Chemo tomorrow ( double whammy of 2 drugs). Started steroids this am. Here we go again.

Love to all ❤️

Thanks @sellotapechicken , most of that I knew - I'd like to avoid bailiff/court costs if possible. .gov says I don't qualify for legal aid, interestingly! I shall see what the council say shortly, then message you if that's ok?

I’m just back in my normal routine waiting for carers, then the district nurse and the OT this afternoon. I don’t really know what she can do for me.

i applied for social housing but they want my landlords name and address and I’m terrified they might get in contact with her. She’s been good to me the only reason I want to go on the list is for some security and less rent. My flat mate who lost his mum at Xmas still hasn’t come back he’s grieving so hard. I miss having a gay man around the house.

Well, the council website does not make it clear you need ID to get help with an illegal eviction, so I didn't take any. Cue (is that the right cue?) grumpy reception woman directing me to Environmental Health...then snapping that I should have brought ID. So bloody say that on the website I checked 🤷‍♀️. I'll fill in the online form in a mo instead <sigh>.

Chemo suite was crackers busy this morning - I walked in to "we were just talking about you!". Had a nice catch up with a nurse who also has incurable breast cancer, the ward manager who was in my year at school, and the lovely ladies who do bloods there. So a nice morning...but frustrating 30 seconds in the (also rammed) council office.

I have just realised too - we have a tenancy agreement until 30th september - so surely he shouldn't be able to kick us out before then?

Fucking hell.

I've filled in the online form relating to illegal eviction, on the council website. Guess how much ID it asked for?

Also - google has thrown up the protection from eviction act (1977) which seems to state he can't kick us out to carry out repairs if I understand it correctly 🤔

Yeah absolutely

How’s everyone?

Just had cycle 1 of new chemo. Thought I would enjoy a week “ off “ next week. Nope, consultant appointment and yet another blood test! Then the week after that, chemo and bloods. WTAF!😱

I'm doing ok. Recovery from the operation is going well. I'm heading home this afternoon.

I have a gazillion medical appointments too. Spoke to my oncologist yesterday. GP tomorrow to look at a lump that has developed in a rather intimate place - probably not cancer but I need the peace of mind. Dentist next week for a filling, then blood test and the usual monthly injections and back on the pills. The week after I'm back at the GP to get my stitches out, all 32 of them. I'm supposed to be organising a physio referral but I just cannot be arsed at the moment.

@Enigma53 I hope the new chemo is ok, are you expecting a lot of side effects?

Since I posted this I've received 2 new follow up appointments 😂

@SewingBeesyou will need to hire a PA to deal with your hospital admin! I’ve just received a stack of brown envelopes through the door; some for appointments in the past and future! Sigh! 😮‍💨 Glad recovery is going well. Will you restart ribociclib again now?

My side effects are manageable this time round ( I hope and think) This time last week, I was sick. This week, I’m steroid fuelled and eating for Britain.

I’m missing work and people. Structure to my day is no more. I wonder how this will end up? Will chemo work, will it not?

The news of my leiomysarcoma buddy, hit me hard on Monday. She’s at the end of the line of treatments. I think I annoyed her, as I asked why she didn’t have a full hysterectomy to remove the uterine tumour. She said it wasn’t that easy and if it was, they’d have done it. She is at peace, although bleeding profusely.

@RedRosesPinkLilies how are you today?

@sellotapechicken I've sent you a PM.

I'm still waiting for my 9am phone call 🙄. It was rearranged this morning for 4:10pm. They rang at 10:30am (ish) - y'know, while the autistic child in my class was having a moment & I was on the corridor assisting him to move to a calmer space. Also 🙄. They're now well over an hour late for the rearranged time that they didn't manage to stick to ffs <BIG SIGH>.

I am drinking celebratory wine while waiting though!

The LL has to serve a proper S21. The lady in the council says also get him to acknowledge that current "notice" isn't legal, and that he will NOT turn up at the house unannounced. She also advised using common sense keeping doors/windows locked, and telling dd1 (who will be home alone some days) to ring 999 at the first sign of anyone/anything dodgy on the property. She said don't worry about wasting police time - she's 18 & she's to ring them, then me to leave work if anything's not right. I'm a lot closer to home than dad to here from work, so makes sense.

What a fucking month.

I'm just glad my health is "good" rather than I'm struggling right now & not able to deal with this absolute shit show.

Fucking blah!

@Enigma53 how very dare you look forward to a week "off".

@SewingBees I hope your calendar has BIG spaces for all these appointments to fit in!

I can’t remember where I’m up to - basically the same. Bringing up food, but not passing any. Had a temp yesterday - they couldn’t find a cause, but it kept me my single room. Happy about that.
Very unexpected visitors tonight - family that drove up without warning and expected to be warmly greeted. (They went through a time of ostracising me). I was upset because I’m finding all visitors tiring.
i made my point that they should have said they were coming. It was ok and it’s done.
But if you’re part of a dysfunctional family it doesn’t stop being dysfunctional just because you happen to be dying

I am lying here enjoying the birdsong outside. It is lovely

At what point do I panic that they haven't called & my appointment for meds tomorrow is at 11am??

Literally no-one is available 🙄🤯

Um, do I go get in the shower?? Ffs this takes the absolute piss

Well, I went with the "oh fuck, chemo's made my head drop off" phone number that I have tucked away in my purse (advice line). She says it's all authorised. So why didn't anyone tell me? & why the actual fuck is it nearly bed time & I haven't showered or eaten yet.

Fuck me.

I’m just spending my days waiting for phone calls and appointments. The doctor from the hospice was supposed to come at 3 today and of course she never turned up. After I’d tidied up as well!

Wtaf is wrong with these people that they think this shit's ok!?

I'd be in serious shit with SLT if I told a parent I'd call at X time or do something by Y day, and then proceeded not to! But because these people have our lives in their hands, it's ok? Fucking rediculous.

Shall be clogging up PALS email again tomorrow - for all the good it does 🙄

& today some fuckwit in pharmacy has taken it on themselves to only dispense 2 out of 3 months of tablets so I have to go back another day for the third month 🙄

*while I was tying this moan, my lovely original BCN has rung. She's been on the phone to oncology already and sorted the third month so I'm off for a pint in the sunshine while I wait for that to be dispensed.