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

[SewingBees]

New thread!

Uber eats is incredible in London. It’s all very exciting I hope she clicks with her house mates and has the best time. Get your nimbus card as you will be needing it!

@lucysmami hope she has an amazing time at uni! I loved being at Edinburgh uni! Thank you for all the really really lovely messages. I think the waiting is so much harder as your brain just goes into absolute overdrive

@sellotapechicken I'm really sorry to hear about your husband.
Wishing you both love and fingers crossed you both are not kept waiting too long for the results.

He had bloods yesterday and we have an appointment tomorrow morning at the Christie so there we go. Time to get the big girl pants on

❤️❤️thinking of you both.

I hope this morning goes ok @sellotapechicken 💖

So it looks like he has glandular fever and is very unwell with it, got to have an ultrasound on his raised nodes, repeat bloods and back to clinic next week, then official results week after that but she said she’s only seen glandular fever causing lymphoma once in 7 years so he feels shit, will feel shit for a while but she’s fairly confident it’s not lymphoma. Gp needs a talking to about telling him it 100% would be cancer and we should ‘prepare ourselves’

Wow, you must be so relieved. I'm surprised at any GP saying to someone it's 100% cancer without biopsy results. Nob

I’m so so angry that the gp said what she said. It’s all been so fast, initially the biopsy was done as a precaution and then some god awful stuff were found in his bloods and the referral to the Christie was done in last than 24 hours. Horrendous. I can cope with my cancer. Not his

Wow @sellotapechicken how to get things spectacularly wrong 101!

Glandular feever is shitty, I do hope your dh feels well again soon.

I have just done half an hour's cleaning in dd1's room - anyone for a mouthful of dust!? The skirting boards are disgusting...lashes all over (she'll be getting a telling to about those & the cats when she's home!), make up stains on the window that I can't get off 🙄.

Meanwhile...she's getting ready for a gig later on! She was partying last night too & went for coffees with girls from her course on Tuesday. Still hasn't really met anyone in her flat - she's met loads of others though. Suppose at least it'll be quiet when she wants to sleep/study 🤷‍♀️.

Hello everyone I guess it's my turn to post here.
I previously posted very sporadically in the BC board. I don't know how often I will come on here but I'd like to introduce myself if that's okay.
I'm late 30s and was diagnosed with ++- lobular stage 3 in late 2023, tiny tumours in my breast but also 28 lymph nodes affected. Did lumpectomy and node clearance, chemo, rads and hormone therapy. Oncologist confident they got it all at surgery. Trundled along until May this year when I was diagnosed with "stress related gastritis" which was an inflamed stomach. First annual PET scan at the same time completely clear. Struggled with it until June (first week of the summer holidays) when I started vomiting up green bile, taken to hospital and urgently admitted for a total duodenum obstruction that turned out to be the cancer, returned and spread to outside of stomach, bowel, and two small tumours in liver. I had two weeks nil by mouth waiting for a stent, but when I went in the blockage had gone and it seemed more like my stomach was just irritated rather than blocked. Good-o.
Anyway, I've now started Paclitaxol, have just had my third cycle and nurses seem very shocked at how much I'm improving. I feel pretty much normal other than some fluid in my stomach which makes it hard to walk far but that seems to be going down.
I am praying that means the chemo is working. My oncologist has said multiple times that I can expect this to be a "chronic illness" that I can live with for years and have treated and that her plan is to get the cancer under control and hopefully gone.
I am trying to hold onto that while also struggling as I feel like I'm the horror story that people are grateful their cancer isn't as bad as.
Anyway I hope it's okay to share my story. Thank for your reading, I'm not very good at joining in with chats as I struggle to follow them but I will do my best!

Hi@ thegirlwithapearl the good thing about this thread is you can post when you want or need. There is no expectations just compassion from people that really understand what it is like to live with cancer. I hope your treatment continues to go well x

How is everyone ?

Plodding on @sellotapechicken . How are you and dh?

I do have a grumble to share...

Ct booked for 7:15pm so I ring appointments to change to afternoon slot. It'll have to be X or Y hospital, says apts clerk, after muttering under her breath that 7:15pm is reasonable (remember, I'm on the bus & it's an hour plus to get home by bus at that hour - last time it was gone 9pm). I was quite rude & just said "no, it won't, it'll be somewhere around 2pm at easy to get to hospital". She put me on silent hold without another word so I thought she'd hung up then came back with 2:15pm on 2nd Oct, at easy to get to and from hospital.

So there is room for movement. Why they insist it has to be 7pm ish is beyond me. And then to argue with me when I've explained I'll get home at bed time & have to go through bus station with dickhead teens 🙄🙄🙄🙄🙄

And yet I had good service yesterday. I went to the blood clinic without an appointment and they said they couldn’t get me in until the 2nd of October. I went to the gp to then collect my forms I was chatting to the nice receptionist and she said the practice nurse was in and she sent me straight to them! And, the results are back already.

i have a PET scan tomorrow even though I had one a month ago because I complained something doesn’t feel right. It feels bigger but soft. They think it’s a lymph node but tbf they got me in for a scan within a week. I’m getting free hospital transport thank goodness. I don’t get paid from work any more I feel destitute. And I’ve got to try for five Green Man tickets on Saturday. Priorities 😀

Can you beleive my oncologist rang me with the blood results from the gp and they are all up the creek☹️ my potassium is high so is my thyroid. I’ve just had it repeated I hope it’s not going to stop my immunotherapy I’m desparate to get it restarted. Normally I’m laid back but I just want to rush over everything and at least I would know the bloody tumour is being targeted.

When will you know @EachandEveryone ?

I booked my first trains to visit dd1 for a weekend, yesterday. It's for 2 back to back gigs, after one on the Thursday too 🙈. Need to see if a colleague will swap for an 'easier' dinner duty now, so I can dash out the door to collect my case and get to the train station 🤞. If not...I'll Uber!

I hope she likes Oasis as she will hear the full show this weekend. I wonder if they have parties outside? I know that sports bar will be mad for it 😀

I expect if it’s urgent they will ring me

Is that the Boxpark one? She's planning to see if there are any cheap tickets go up in the day, like she did for Post Malone last weekend. She said his crowd was dead, and rude, though...apparently some woman told her to piss off when she was trying to get through to the toilets 🙄.

Are you back at work now @EachandEveryone? I want to get back to work. This is bloody ridiculous.

@lucysmam i thought you were a TA?

@Enigma54 I am...I started as a dinner lady many years ago, then took the TA job & kept the dinner contract. Then added breakfast, and dropped that, as well. I do mornings in class, then dinner duty, then come home & do shit here 🙄.

I can’t go back to work yet but I’m hoping by Xmas. My boss said I’m owed six weeks leave and I would get paid for it this month but I never. So that’s another grand I had to take out of my savings ☹️

yes box park would and be interested in working there? I hope she’s looked into working for accessibility at Wembley. I wouldn’t know how to. Have u got a dissabled rail card?

She says there are no jobs that side of London! I called bs & told her to keep looking...another week & I'll start sending links. Boxpark, Lidl, Wembley Stadium itself or somewhere around would be ideal! I hadn't actually thought of suggesting Accessibility but will do now!

Yes, I have a disabled railcard. Used it so much this year! I need to email to Hammersmith apollo accessibility team actually, before I go in 2 weeks.

All those accessibility workers are students I asked them all. There are thd outlets at Wembley as well. Selfridges are advertising. Oh god there’s loads of jobs in London. She will feel the pinch soon enough. My niece worked in a pub next to the palledium had great fun

I’m actually going out tonight!!!! Going to see Russell Kane I need a laugh. God getting ready is hard isn’t it? I long to beable to lift my leg up and get in the shower. I have a bath board but not really sure how to use it. I’m sick of strip washes and that hole in my groin stinks. The nurses keep saying there’s a hard lump must be an infection but when I felt it I’m like no, that’s the tumour. It’s right in my groin. Rock hard I’m terrified it’s going to come out of the hole!!!