Meet the Other Phone. Only the apps you allow.

Meet the Other Phone.
Only the apps you allow.

Buy now

Please or to access all these features

General health

Mumsnet doesn't verify the qualifications of users. If you have medical concerns, please consult a healthcare professional.

Cancer support thread 91 - don’t borrow tomorrow’s worries

991 replies

LemonDrizzle10 · 27/10/2023 07:39

New thread

OP posts:
Thread gallery
22
Tilllly · 20/12/2023 22:47

Oh @KentishMama
That's crap 😟

Are you in kings now?

Silkiefloof · 21/12/2023 01:34

Thanks Kentish Its fine, I hope there would be someone to do that for everyone on here especially when someone has kids.

Capturetotalelotion · 21/12/2023 06:17

Off to the breast clinic today. Absolutely shitting it. Really hoping it’s just a cyst as I have had those before.

TwigTheWonderKid · 21/12/2023 09:18

@KentishMama any news?

@Capturetotalelotion totally understand how you are feeling but statistically it's likely to be a cyst and if it's not, the sooner the better you get it all through checked out. They will look after you so well.

TopOfTheCliff · 21/12/2023 10:02

Sending strength to the scared this morning.
@KentishMama thank goodness you got through! @Capturetotalelotion fingers and everything crossed for you.

Capturetotalelotion · 21/12/2023 11:20

Thanks all! 6cm cyst drained and multiple more identified. I just wish rheumatology was as well run and efficient as the breast services at my local hospital. Oh well. Sending healing vibes to all and happy solstice. It’s going to be brighter from today!

EachandEveryone · 21/12/2023 12:36

I woke up with a swollen upper abdomen this morning and freaked out. I’ve had a pain at the bottom of my sternum for a couple of days and I already know from my scan that there was a small collection of water there. I thought I’d gone into failure of some sort. The CNS over the past home was not worried at all said to take anti inflammatories and to go to walk in clinic if it gets bigger. I’ve been carting furniture around she things it could be trauma. I don’t know

other happy news my sick pay ran out do I have zero pay this month. My boss has put me in for annual leave so hopefully something will come into the bank!

Tilllly · 21/12/2023 22:11

Crap day @EachandEveryone

The HR dept really shld have given you a heads up

KentishMama · 22/12/2023 00:30

Hi all,
Greetings from Kings. I've had another surgery to try to fix the CSF leak, this time with a fascia lata graft from my thigh. However, after the surgery it leaked so much more rather than less than I also just had another lumbar drain placed.

I was adamant that I wouldn't do the lumbar drain without proper sedation. My consultant agreed. However, his team then badgered me until I consented to them doing it bedside. "There are no operating theatres available until morning, you need to understand that delaying until then could put the entire reconstruction at risk. Is that what you want?" etc. I really wish they didn't do this. Sure, it's all about informed consent, but it feels like they just keep pressuring you until you do what they want.

Seems that I'm stuck here over the holidays now. More broken promises. Damn.

tothelefttotheleft · 22/12/2023 00:48

@KentishMama

I understand what you mean about being pressured into what is decided for you.

Christmas in hospital must be difficult to get your head around.

(I'm another Kentish mama.)

LuciaPillson · 22/12/2023 05:43

Ohhh @KentishMama I'm so sorry, wish I could waft you out of there in a mince pie coach with a flight of reindeer. It all sounds too much to cope with and horrid you've been pressured to agree to things that aren't what you want. Has the drain been placed? I hope they're at least giving you adequate pain relief. Can we come and be with you in spirit and bring various knobbly sharp objects to poke at the lumbar regions of the consultant's team? Wish we could all show up, and bring you presents and cuddly blankets and whatever you need. Anyway, here are some virtual hugs and a hope for improvement whenever the nitwits figure out what they are doing (or even sooner than that). 🤗

Tilllly · 22/12/2023 07:14

Oh fuck shit bugger damn @KentishMama

I'm so sorry and pissed off for you

What can we do to help?

lucysmam · 22/12/2023 07:48

Aw @KentishMama so sorry you've been railroaded into a procedure you didn't really want 💐 . It's so frustrating & worse because we all know exactly what they're doing but they make you feel there's no other option.

Sending you hugs, I hope your leak is fixed soon 🤗

@EachandEveryone has your swelling reduced?

I'm pissed at another letter - this time the nurse I saw on Monday. I deny having this and that (fancy words I don't know without looking)...NO I BLOODY DON'T DENY IT...I GENUINELY DON'T HAVE THOSE SYMPTOMS. Deny still makes me sound like a liar! And apparently I'm still waiting for treatment after chemo - um so I've been taking tablets for 3 months randomly then?

Rang to ask for her to call me about the content of a letter please (enough reason for the receptionist to note, I thought), reception asks what about the content. Well, I want to discuss with the person who wrote it...not you...unless you're qualified? "No but I'm sensing hostility"...nope you're sensing I'm severely pissed off with feeling like I'm being called a liar by folks who don't know me & would like to discuss it with the person who wrote it 🤷‍♀️

AAND breathe! I'm off for a spot of festive window shopping & my re-grown eyebrows shaped with dd1 this morning. Coffee and cake will feature too.

I hope everyone else is doing ok?

Fantasea · 22/12/2023 10:15

@KentishMama I'm so sorry to read your update and hope you're a little more comfortable now. I can relate to the bedside bullying, it happened to me too over an abdominal ascitic drain which was done by two cardiologists, presumably the 'duty doctors' as they claimed there was no space in Interventional Radiology where my other ones had been done. I'm certain mine was not as traumatic as a lumbar drain but I can remember the feeling of helplessness as the one doing the procedure clearly had no clue but was being instructed by the other! The drain itself was unsteady so they keep it in place by stitching it to my skin without numbing it first. I was holding the sides of the bed and crying with pain. I really feel for you, it's bad enough after all you've been through to be admitted again with another surgery, but to be made to feel as though you will be complicit in any further complication is really unacceptable.

@lucysmam oh dear, what is it about these receptionists? They can speak to you as they like but defending yourself is 'hostile' 🙄. I'm sorry to hear you've had another letter. As the patient, surely you know if you've got a certain symptom or not. What was the outcome, has the receptionist agreed to pass on the message?

EachandEveryone · 22/12/2023 10:41

I dont know if its gone down but its not bigger. Im eating a macdonalds breakfast and you are right, HR shouldve told my boss. I suspect they did she really isnt experienced and seems to think i will be fine going back without a plan from Occy Health. I just want to retire and return I have paid into the old pension and apparently its just sitting there I should take it out and invest it. Im useless with money and will probably soend it on holidays and handbags. The truth is if I dont get through this it will be wasted as i have no children so it makes sense to get it out go back to work and continue paying into the new pension.

i have to do some kind of job and thats what I need to talk about with my boss.

thst can be for next year now.

my nieces are here and they are nice young women but they still fight with each other i will be glad to put them back on the train.

KentishMama · 22/12/2023 13:17

Thank you for all your messages, ladies, much appreciated. The drain is in and working, so now I'll be stuck here for a few days at least. Trying not to think about Christmas until I've had a tiny bit of sleep.

LuciaPillson · 22/12/2023 13:37

@lucysmam "Sensing hostility" is such cuntish passive aggressive therapy speak language (and would escalate my hostility to nuclear capacity). Of course cancer patients will be tired, in pain, upset, irritable and so on sometimes. I've noticed that when I'm doing admin, phone and so on, the person on the other end is at work so they think I'm at work too, and if I'm tired or moaning or preoccupied or can't speak clearly or am grumpy (this last frequent) they sound all puzzled and as if I need to try harder! I mean I do try to be nice to them. But feck!

Re the deny thing. I was talking to my lovely palliative doc about the language used by doctors and the arrogant and dehumanising things GPs and consultants used to put in letters that weren't seen by the patients, back in the 80s. Which I saw back then when I worked at a rather shite little medical clinic. And I brought up the use of "deny" as it's so upsetting for people. And she said it's just the standard language they use to say patient reports x is not happening, and it's neutral and doesn't imply that they don't believe the patient.

I pointed out how upset patients get because it sounds so bad and as if they are accusing patient of lying, and she agreed that it needs to be changed. But how do you change the bad practice of a whole profession across different countries? Because it's the same outside the UK! I'd like to hope if they get enough feedback from angry patients things might change but it's likely not the first thing on anyone's mind and it's so pervasive.

Anyway wishing you much coffee and cake and a good mental break from it all. ☕🍰

@Fantasea Oh the description of you crying in pain during stitching... how could they? I mean they can numb the skin for small procedures anywhere surely like having a mole out in a drs surgery? I am so sorry that happened to you.

lucysmam · 22/12/2023 14:05

@Fantasea I had a similar experience during biopsy where I was crying in pain & had covered my breasts, and told them no more. The two nurses literally moved my hands & held them while the person doing the biopsy carried on. I was that out of it at the time I said nothing but now considering a complaint. Something really needs to change!

Yes, she took the message eventually. Goodness knows when the nurse will call though 🤷‍♀️ I was polite & used my manners - I didn't think I was hostile but maybe my tone was - tbh, I'd expect it to be if a patient is calling to "discuss the content of a letter" that they disagree with or are offended by 🙄

@LuciaPillson I'm running out of "be nice" very very fast! I'm not being paid to be bloody nice...I'm phoning to express how pissed yet another poorly worded letter has made me feel 🙄

LuciaPillson · 22/12/2023 14:34

@LuciaPillson I'm running out of "be nice" very very fast! I'm not being paid to be bloody nice...I'm phoning to express how pissed yet another poorly worded letter has made me feel 🙄

@lucysmam I apologise. I didn't mean at all to suggest you should be nice, I think patients should tell docs how they feel about these awful letters. I'm sorry I expressed myself so badly because I do agree with you.

tam23 · 22/12/2023 15:07

@KentishMama So sorry for your complications. I’m glad the drain is working and hope it does its job swiftly for you.

lucysmam · 22/12/2023 15:23

@LuciaPillson no! I didn't mean you hadn't expressed what you meant well! I think I maybe didn't in my reply 🙈

Fantasea · 22/12/2023 17:23

@LuciaPillson thank you for your kind words. They had numbed a small part for the incision but as one of them was reading from an instruction sheet whilst directing his colleague, it took so long that the local had worn off. I'm so weary of it all now that I would say something but this was my first experience ever as an inpatient apart from childbirth and it didn't occur to me that I could if that makes sense. More recently, I had an US for a liver lesion and had been kept waiting in a bay in the mixed day unit with the curtains open for about an hour. This was no problem in itself, I can wait and had 2 medical students waiting with me who were very interested in my condition so all was fine. That was until the consultant swept in and in a single movement took hold of the US sensor/handset thing and said 'can you lift your gown up'. I said I could but I could he close the curtains first please. With the handset thing still in his hand his shoulders went up and then down as he let out a huge sigh and then drew the curtains around! Funnily enough, I didn't want the man opposite to see me lying there in just my pants. The medical students were obviously scared of this consultant and there was a bit of an 'atmosphere' after that which I just ignored.

I do know what you mean about the expectation by receptionists and indeed some medics to try harder. I was diagnosed in 2020 in the thick of Covid and was made to feel as though I ought to be grateful for even being treated as there 'is a pandemic don't you know'. I had been fobbed off for so many months but over Christmas 2020, I somehow found my voice and then would you believe it, my treatment started 6 days later. Without being dramatic, had I not asserted myself, I wouldn't be here now.

@lucysmam I'm so sorry that happened to you during your biopsy and I think a complaint is perfectly justified. No-one should be held down for a medical procedure after having been told to stop, you were withdrawing your consent, it's outrageous.

@EachandEveryone I do hope you can get it sorted out. I know what you mean about wanting a bit of peace when you're not well and have a lot of worry.

KentishMama · 22/12/2023 18:51

@Fantasea The stitching thing happened to me as well, two weeks ago. They decided to put an extra couple of stitches in the drain to secure it better, and the doctor said that giving the local would be more painful than just quickly putting a few stitches in. Well, that was a total lie. I'll never forget the sensation of thread getting pulled through my skin, it was horrendous. I've been practicing "I do not consent" ever since.

Tilllly · 22/12/2023 22:31

My gripe is so much more minor than everyone else's

I've got heartburn
I'm constipated
DH has a cold and is painful with it
DS2 failed his driving test and is really upset

I'm a bit fed up today!

lucysmam · 23/12/2023 07:28

@Tilllly gripe away! That's all pretty shit in itself tbf.

Have you got something for the heartburn & constipation?

We're off to Ikea today - on the train. It's rather windy out there & I suspect bus would be better or going another day. We were going to head into Sheffield city centre afterwards for a mooch around the Christmas market too but they closed it in the high winds the other day 🤷‍♀️ I only want some tupperware from Ikea, nothing that can't wait.