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

[SewingBees]

New thread!

Crikey esa sounds lile hard work to claim!

Kind of...

"You have cancer? Excellent! Let us make your (already a shitshow of difficult to navigate bollocks) life even more difficult! You're tired?? Fucking fabulous...lets make you more tired & force you to agree to work committments! You have an appointment? For the meds that keep you ticking over & might actually be saving your life?? FUCK NO GIRLFRIEND! You have to see us on that day, at that time. You'll need a more convenient appointment so you're not out past your 7pm bedtime so you can function as a grown up?? Also no girl! Suck it up! It's only cancer...not like it's actually life threatening anyway" <shrug>.

Read in THE MOST ANNOYINGLY ENTHUSIASTIC voice you can muster.

Anyway...I have perioral dermatitis. Caused mostly be over doing steroids as far as I can work out <chanelling my inner jock>. Except the steroid cream I was using, was on my arms and chest, for the psoriasis the pharmacist told me I have <sigh>. I itch like fucking mad! & I am rather strawberry coloured. & I have at least 3 months of antibiotics to take. And it might not even help. 🙄🙄.

I am also about to become the least favourite knobhead at work - someone has misunderstood something & it's impacting quite a few of us so I've emailed the SENDCO that I need to talk it through because it's niggling away at me 🤷‍♀️. I do not give a fuck if it makes me unpopular. 45 mins of press-ganging kids into doing dinner lady jobs at lunchtime was not fun. And was not fair on them. The other adult in the room? Well...they were not in the fucking room. Fuck knows where they were but they were not where they should have been or doing what they should have been.

@EachandEveryone thank you for asking at Wembley; I've told her to apply direct.

Although at this rate she is going nowhere.

She hasn't chased accommodation, or loan, despite me being available to do so & reminding her repeatedly.

There are only so many times I'll remind her to do things. Why the fuck it is taking up so much of my brain space when it is clearly taking up none of dd's, is a bit beyond me.

My niece was exactly the same. Is it the creative types I wonder? I hope the loan has been increased. I could live in that Wembley student accomodation but if she doesn’t get her arse into gear she might end up in accomodation somewhere else. Yes they were a lovely bunch working at Wembley. Are you trying for Radiohead tickets? I’m just thinking about it he’s such a miserable man but I do love their old stuff.

im so bloated I’ve put on three kilos in two weeks with the steroids. I’m going home tomorrow and it’s the first thing my mother will notice. She doesn’t understand why I’m going home for my birthday. I don’t think she will ever get it.

She's up! She's surprised me this morning. She's going to contact both without me & if it sounds like she's been fobbed off then I'll ring with her when I get home & kick backsides into gear.

It's nice accomm & they said there's plenty left at the moment.

Radiohead is very tempting but we spent on Florence this week so they might have to be resale 🤔. I was surprised by that one actually! Never saw them when I was younger so maybe we should!

I think a lot of people don't get it. My lot certainly don't. Hopefully it won't tarnish your day too much

Right...off to speak to the SENDCO. Sounds like a moan in my head but meh 🤷‍♀️

Hello I've rejoined the thread after a break my sons back to school and I'm back to mumsnet!.
I received ESA in 2020 and it sounds like the procedure has changed a lot . I just had to tick 'I have cancer' box and then I bypassed all the other questions I'm not working though. Apart from some adjustments when my NHS pension kicked in they have left me alone.
I was sad to read about @redrosespinklillies death she had the same cancer as me and I think was diagnosed after me.
To reintroduce myself to the thread I was diagnosed with stage 4 fallopian tube cancer in 2020. I've had a radical hysterectomy, 4 rounds of chemo, 2 maintenance drugs and I have a right nephrostomy and in March this year I was put into palliative care.

I had my 4th round of chemo this yr and had a pretty good response so now I'm on a break/waiting for the cancer to return and then I suppose I will have to decide if I want to treat or let the cancer take its course. My head says I've had enough, but my heart says it you've got your son (12) to think about. Through the progress of cancer and the poisons used to treat it I've lost so much of what makes me happy and makes me ME, I think what's the point?
Despite all that I feel pretty good right now I've just booked on to a look good feel better course my hair has the consistency and look of a brillo pad so I'm hoping there might be some magic answer to make it look better! Yesterday my son started year 8 a milestone for him and one I didn't think I'd see xx

@Walkingnotrunning1 was your username something beginning with f before?

Yes

I thought so 😊
Yes it was very sad about Trysh (@redroses) She was lovely and had such a lovely family too.

Are you off all treatment now then?

That’s good that you’ve seen your son go into year 8. My next goal is to see my
daughter reach 21 in November and my son reach 18 in March.

I’m also glad you are feeling well, it makes such a difference to quality of life (even though life will never be the same). I too have had the “ treatment/ no treatment” conversations with myself. With living parents, a partner and 2 young adult kids, I can’t not do all I can to keep going. Equally, this leiomysarcoma cancer is one of the worst and I’m under no illusions about how it could play out.

@Walkingnotrunning1 the top of my hair is also brillo-pad-esque! The underneath is quite nicely curly 🙄. Fuck knows what's going on there! Conditioner/oils don't seem to help.

Loan is sorted, she actually is entitled to 12k. What a farce to get it sorted though!

I'm just about to ring accomm with her & make it very clear this needs sorting today so that we can arrange time off to move her. Wish me luck...I NEED IT!!

That’s exactly how much my niece got four years ago!! It’s doable as long as she gets a little job. I’m so excited for her I even looked up where the uni is 😀 imagine if she gets a job at Wembley no transport costs or anything.

two weird things happened today.

i got a phone call on my land line from a lady who didn’t know me who proceeded to tell me about her mastectomy which is leaking she was discharged home yesterday. I felt so sorry for her I had to tell her I’m a cancer patient as well not a district nurse. We had a good chat and

That’s exactly how much my niece got four years ago!! It’s doable as long as she gets a little job. I’m so excited for her I even looked up where the uni is 😀 imagine if she gets a job at Wembley no transport costs or anything.

two weird things happened today.

i got a phone call on my land line from a lady who didn’t know me who proceeded to tell me about her mastectomy which is leaking she was discharged home yesterday. I felt so sorry for her I had to tell her I’m a cancer patient as well not a district nurse. We had a good chat and I told her to ring the ward. How bizarre how did she get my number?

secondly my lovely community nurse came early so I could catch my train she did my dressings. I just got on the train when my cleaner rang to say a very irate district nurse had been around looking for the housebound patient luckily the cleaner said I was at a hospital appointment and this nurse still said well she’s not housebound then I shall have to report it!! WTAF? I don’t know what to think about it or whether to say anything. I’ve told my team I’m away for my birthday and my niece will do my dressings. They should be glad it’s one less patient.

Re My ESA claim, I claimed with the thought that I would be put into the support group once my application had been dealt with especially given the fit notes I've submitted and my diagnosis. I filled in the health form and ticked the box that says Cancer passed it on to my breast nurse team as a HCP has to sign and stamp it and fill out the details of your prognosis and in their opinion can you continue in your job in the next two years and if not can you do any job. I don't know what was written as they were going to fill out and post it on for me but I would presume the default would at least be "no working for the moment". The job centre advisor, when he phoned me wasn't even aware I was ill but the "system" meant there was no leeway and he had to make "work commitments" with me whilst telling me a health form would be sent out. He was surprised to hear I had had the form and it would have been returned already. The whole system is just one big mess, it seems the medical assessment side of it is way behind the job centre side who appear to be doing what they should be doing. I'm grateful for the £92 per week for now but dreading whats ahead if I don't get into the support group.
I thought I would try and be a "normal" yesterday and in desperation escape this whole DWP thing, I saw a job advertised locally 10 hours per week over 5 days so I applied for it, thought it will take some energy but I could give it a go, but today I'm wiped out walking from the car and up the hill to where I needed to be. I know I'm coming up to my "free from treatment" week next week and it always drains me but reality hit home, there is no way I could be a reliable employee for anyone yet. I've spent the afternoon dozing and resting. September is a busy month, hopefully I will get through it.

@EachandEveryone thanks for being excited for her!

She's sorted, accommodation deposit paid last night. I ended up emailing the accommodation people, and cc-ing the uni, that we needed a response yesterday before close of business for the day...they responded to me within half an hour...and dd had the link to pay her deposit after an hour and a half 🙄.

I have responded to their email asking if there's a way to provide feedback. I shouldn't have to step in & send grumpy mum emails for her to get anywhere. The whole bloody point is independence but she needs me to step in & be pushy rather than wait...however long...it takes to respond properly to her.

Anyway, suitcase, first aid kit, cold & flu meds buying today.

My friends daughter has got into a small uni in Liverpool just specialises in the music business. What course is she doing?

im 58 today and my mother has told me that the en-suite stinks. You couldn’t make it up, we aren’t close. Her and my sister are obbsessed with smells it’s awful.

Happy Birthday @EachandEveryone I hope you do have a bit of a lovely day today despite everything
P.S I'd be tempted to find the peg bag and offer your DM and DS a peg each to wear on the end of their noses, but that's just the mischief in me.

Btw has anyone dyed their hair at all? My hair stylist won’t do it but I was out with a hairdresser friend thd other day and he said some very fine highlights would really go well with my now grey hair. I keep thinking about it and wonder if it would work.

I’ve no hair to dye.
If I could l definitely would!

Happy birthday to you! 🎉🥳🎂🎁🎈
Why have your mother and sister made those remarks? Hope they weren’t aimed at you?

Yes firstly I asked if anyone would change my groin dressing they said no. My friends in London can’t do enough for me. Secondly my mother knows I have colitis and that I have to go when I go yet she still mentioned a smell.

i can’t win when I was in hospital they were straight down but now they seem to think I’m better so have backed right off.

That’s so mean @EachandEveryone It’s not your fault you have colitis. It’s a nasty condition anyway. Your friends sound fab.

How is your scalp and the general condition of your hair? Will your hairdresser friend do it for you if your current hairdresser refuses?

I just slap on some coral pink coloured cream blusher and red lippy now if I want an image boost, better for my currently tender scalp that's for sure! I decided to cut my shoulder length, heavily highlighted hair, into an undercut after the day I was too tired to lift my arms to wash it properly and couldn't then use the hairdryer as I found it was too heavy, and I can't imagine having to do all the upkeep of highlighted hair in my current physical condition, it was quite labour intensive really (and expensive to maintain!)

Also, I'm sorry about the further update regarding your DM and DS and how they are treating you today. I realised my previous post more than likely came across as flippant or mocking and it wasn't my intention so please accept my apologies, I didn't understand the whole scenario when I was writing.

Oh god my leg dressing on the pump is completely full! Just perfect whilst I’m away I don’t seem to get a break. Does anyone know who I should call tomorrow. I don’t want to wait in an and e for hours. I’m not due to go back home until Monday but I’m not risking it.

they are a strange bunch when they all sang happy birthday I tried to say thank you for everything etc and they just all talked over me. It’s like none of them want to accept it and if one more bloody person says any of us can go at any time I think I’ll scream. They don’t understand I nearly bled to death afew weeks ago. They all bought me beautiful presents although I did get 18 pairs of socks 😀😀😀 so I can’t complain I just wish they’d acknowledge my illness

@EachandEveryone I'm sorry your trip's hard work. It shouldn't be like that. Do you have a number for the District Nurses at home? I wonder if they might be able to point you in the right direction.

@EachandEveryone when my former employer discharged himself from hospital late Friday afternoon (he was supposed to stay all weekend but didn't want to) he realised he had no one to change his daily dressings and of course the Doctors Surgery wasn't answering the phone (I think DIstrict Nurses were fully booked/too busy/uninterested can't remember), anyway, as a last resort after I refused (squeamish!) I suggested Facebook to ask for help as our community page is very active, by the next day two people had contacted him who were qualified and happy to change it for a charge of course. Maybe worth a try if you aren't already holed up in A&E somewhere?

@EachandEveryone I was thinking maybe a walk in minor injuries unit might help? You don’t really want to be stuck in a&e. Or you could try calling 111, they may have details of a clinic? The FB idea is good, except you are not at home. Or you could go to a&e and just ask what you could do?

I’m at the walk in centre and I’m starving! The tea shop has nothing in it