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

I'm in till Tuesday when they are going to do the nephrostomy then hopefully that will sort my kidneys out and we will be able to talk about chemo.

@Florsilvestredelcampo oh Tuesday, damm. Best try and get everything sorted while you are in I guess. How is your son? Is he okay? ( I'm thinking he's quite young?)

@Florsilvestredelcampo forgot to say, my daughter goes to uni in Bath and regularly visits Bristol. I also have distant family in Bristol ( Keynsham)

My boy is 12 in 2 weeks time he doesn't want to visit me in hospital I think it scares him . I have spoken to him on the phone and he does message me. I'm missing him but I won't force him to come in.

I found the sunshine in the north-east! Lovely day, not a cloud, I was down to a t-shirt and jeans at one point.

Chatting to my mum about holidays and I realised I'm not up for planning something for 6 months from now, life is just too uncertain. Though I did have an interview this week for an internal promotion, so some part of me reckons on being around for a while yet. 🤷

My eyebrows, or what's left of them, are about 1mm long now and almost entirely white. I pencil them back in when I can be arsed, which isn't often. My eyelashes, which used to be thick and long and curved, are now stubby and ugly so I avoid mascara. I no longer dye my hair - I used chemo baldness as an excuse to let it grow back naturally. Luckily it is still thick and curly so I think it looks ok with its streaks of grey, though others might not agree. But I've never worried too much about other people's opinions, and even less so now!

For those suffering at the moment, whether it's bunged up bowels or sore mouths, or something else, I'm wishing you all some relief xx

@Enigma52 I do get your drift 😁
Sadly I have found no such thing in my garden today, which is probably a good thing as the way I feel sometimes these days, I could be tempted 🤐

@Florsilvestredelcampo I'm so sorry your son is feeling scared. It is so hard on the children.
Good luck for Tuesday lovely.

@SewingBees I would love a holiday, I'm just too scared to go abroad in case something went wrong while I was there.
I do miss my travelling life though.
I have found one of the hardest things for me is not being able to plan anything too far in advance.
Still, I'm happy to visit places nearby or a bit further away.
We are lucky really as the UK has some really beautiful places.

Have a good evening all xxx

Urgh, what do I write in a letter giving notice on just one of my school jobs? I want to drop breakfast - luckily they're three separate contracts.

Random question- what do they fo if they repeatedly can't get a blood sample from you?

Mmmm.. good question.
I've often thought the same.
I don't know. Are your veins rubbish?

How is everyone today?
@Florsilvestredelcampo how are you getting on? Xx

Feeling rather " meh" this end.
Been signed off until the end of term, yet I feel there are days where I could work: so now feel a bit of a fraudster!

Urgh.. this new diagnosis has really thrown a spanner into life! Menopause symptoms have ramped up 10000 notches and I would now give anything for a bit of oestrogen! 🙈

Back on the ward after nephrostomy right side done as Dr hopeful that that will be enough to improve renal function. So bloods in the morning and then hopefully first round of chemo before being discharged.
I have been moved to a very nice private room as they worried I might have an infection . But all infection markers are clear so I'm sure I'll be kicked back out onto the ward.

Fingers crossed it goes smoothly @Florsilvestredelcampo !

@Enigma52 I get you on the fraudster thing! Enjoy the days you're able to - treat it as an extended half term break.

It's all gone to shit here. I'm struggling to fit my lesson into the time I have. I don't want to do breakfast any more but probably need to. All my Guiding resources are being collected this evening & I cannot find the cheque books. And then dd1 & 2 separately tell me that dd1's best friend's brother has passed away, but dd1 was told by her college friends today (days later). So now the girls are upset, & so am I tbh.

I had a rant at the BCN earlier that I am not a number, or just a patient, hanging about to dash to appointments/answer the phone when the NHS says so. She replied that I'm legally entitled to time off - I fucking know, dickhead, I choose to go to work! & that it's out of their control for timings (no, some other dick thought they'd be clever & get ahead, and in doing so, I missed out on speaking to someone!). & why tf make appointments if they don't matter??? It bloody does when you're in the middle of your working day & not able to just randomly drop everything.

Fucking SIGH!! Pass the wine 🍷

Anyway, to answer the question...I am apparently really fucking angry tonight!

Can they use a different body part (feet, maybe)?

Had an absolute nightmare with my account! It's batteryChicken 🤦‍♀️🤦‍♀️

@sellotapechicken what happened?

I broke my phone so I got a new one. Lost my password for my account and email because I'm a technophobe and can't remember any passwords. So I can't access the email address I set up that account with and I can't change the password on my old man account because I can't remember the password for my email address.

I set it up with a throwaway email address as I'm a bit paranoid about data leaks because of when Mumsnet had an intern leaking email addresses a few years ago.

Anyway I'm back! And I can post again! Hope you're all ok :) I can prove it's me though! My first and last name on the fb group start with S

@sellotapechicken welcome back! Technology eh? How's it going? Are you going back to work?

@herbal are you okay? Been thinking of you.

@Florsilvestredelcampo how's it going? How are you feeling ?

In officially going mad! I want to get back to my mad little job with the kids who make me smile. After Easter I'm
aiming for. No idea what kind of state I'll be in by then mind!

I’d love to go back to work but it’s just a dream it seems.

i feel so hopeless. Has anyone lost weight? I’m definitely losing it but I just don’t always feel like eating. I hope it’s stress and nothing else. I can’t go out as I’m forever waiting for the nurses to come to change my dressing. It’s leaking constantly and I don’t know what I can do. I feel like there has to be a more absorbent dressing somewhere. I’m still on antibiotics because of the infection.

the pharmaceutical company has approved the immunotherapy but the Trust has to sign off and pay for it. It’s the Trust I’ve worked for all my nursing life. Let’s see fingers crossed.

@EachandEveryone So glad to hear you've passed the first hurdle for immunotherapy, that's really good news. Fingers crossed your trust approves it too - any idea of the likelihood of that?

Well it has no money like all of them so I really don’t know. He’s optimistic though.

I'm ok! I think I'm going to go back to work to attend the mdt meetings and do non clinical stuff because I feel like I'm going insane otherwise how're you?

@sellotapechicken I was wondering if you could do some teaching eg; if medical students. It’s good to feel like yourself again.

I was a bit down yesterday as we’ve probably been too busy (with lovely friends visiting - so I shouldn’t complain). I don’t work but forced myself to do some hobbies and be active (rather than just reading), and felt a bit better.

@EachandEveryone Im sorry you feel so crappy. Have you spoken to a dietitian? I was given advice by one to add powdered milk to semi skimmed or full fat milk - to boost the protein content. It’s just the dried milk you can buy to keep in an office that doesn’t have a fridge.

@sellotapechicken insanity has set in! Shedding hair, buttock pain from ( I assume ) sarcoma, chemo next week, scan on 29th march, wanting to be ( but probably can't be) at work. Life is rosy ☹️

The app seems to have changed?

I’m E53 again! 🤷‍♀️