Cancer Support Thread 93 - The Thread for the Dread and the Not Yet Dead? Everything you need to know about Cancer but didn’t want to know

[LemonDrizzle10]

Shiny new thread.

@tothelefttotheleft
That's been my experience too. I pointed this out to the consultant yesterday with examples and she looked like a rabbit trapped in the headlights.
@Shityshitybangbang - I hope that your letter was ok and didn't contain any surprises.

Perhaps you should contact ACAS if you are not in a union. You have a legal entitlement to be registered under the disability act.
It is horrific that they don't know about this

@tothelefttotheleft sorry that's not been your experience. Doesn't sound professional at all.

No energy for a bun fight.

@Tilllly I'm just waiting for a call back from the union rep now. I'm not at all surprised they don't know tbh. They're part of a MAT who have had some bad press this week that some of you may have seen.

They tried to stop me on the way out for a "quick catch up" outside of my working hours. Erm...nope. & no to one afternoon next week too. I can do any time I'm here though if someone covers me...

@EachandEveryone sorry to see you're anxious about going in too. It really shouldn't be this way.

The comparing does my nut in..."our Jessica (randomly picked a name) had this, that, and the other and she's fine now.". .well whoop for Jessica but every one of us is bloody different. Jessica's experience won't have been the same as mine is being ffs 🙄🙄🙄

Surprised my eyeballs still reside in my head tbh I spend so much time eyerolling everything!

In other news, I thought my washer was broken. Washes fine but there's a random rattly noise I've been trying to locate. It's a small case of beers in glass bottles that's sat on top of it ffs!

That's funny re rattling. I vE just been blaming my poor dog for acquiring a thankfully lid covered trochar and asking him where the heck he got that from ( don't ask lol) and it suddenly struck me ...I'd opened a drain bottle packet yesterday, and it must have fallen out and gone under couch. Why so much equipment for Just a bottle I ask Just glad he didn't find it... Cat may have ended up by with a pneumothorax!!!!

Omg just this morning I booked a repair for my rattley washing machine

Just off the phone with Unison. Yes work are in the wrong. No they can't have Monday's meeting until at least Weds, and in work time, because none of us are available until then. The DDE might not be suitable but don't worry - we can look into something that is. Yes you can request OH in person, failing that, a rep will sit in during work time too & then go over their report with you. & a nice reminder that they're meant to make my life easier if I need them to, so we'll force them to remember that.

I just need to email the HT now to tell her Monday is not happening...I expect a breezy "ok, no worries" type reply 🤷‍♀️

@lucysmam Really glad you've got union support, I hope they can bring your work around to the idea of treating you reasonably xx I'm very grateful that I don't have the same problems, my boss is lovely and very very supportive.

@lucysmam glad that you are receiving good union support; what a relief.

At the end of the day, any person can get struck with with cancer, so I don't know why some employers need to make life difficult. How would they feel if the boot was on the other foot?

So, apparently it was to be an informal meeting but now they'll take advice from HR. How about do that first, before being dicks & bullying your staff?! They think they're telling me when too - I don't know what days the rep's available...I do know I have something every afternoon next week so it will be in work hours 🤷‍♀️

Hello again everyone.

Thank you all for all your support over the last gruelling 6 months. I have really appreciated these threads though I haven't posted very often.

I have just had a phonecall from a lovely oncology nurse saying that they've finished analysing all the lymph nodes removed during the colon resection surgery that was just over 2 weeks ago now, and there are no signs of any cancer cells in them and no other evidence of spread so no further treatment is needed. Feeling really weird and weepy. I think there's an "after cancer what next" thread somewhere that I should go and join. I wish all of you the very best of luck in navigating through this horrible experience and may you have good news where possible and much love and support until then.

Great news @HohiyiKozbevi - hope you have a great weekend and start planning some treats!

@HohiyiKozbevi that's excellent news to see! 🥳

@Enigma52 Enigma52

@SummerCycling has your employer left your position open, for when you want to return again? If so, that's very good. How are you feeling today?

Yes, open for as long as I need. It's very good, in fact it's wonderful and I do feel extremely fortunate. They've always left it up to me about how long I need off and also how much I can do when I return. I've done big projects with one of my managers, we run them together and get on brilliantly, plus there is 100% mutual trust. They only asked me for a sick note when we were discussing sick pay, which I got for a year. I don't even know HR or OH, never heard from them - one of my managers arranged the sick pay etc.

Kind of you to ask, I'm feeling much better today. It varies, as I expect it does for most people after so much cancer treatment over so long and with a moderately high chance of recurrence. How are you doing this weekend? xxx

@lucysmam I'm glad to hear you had contact with your union. If I were in your position, I would let my union sort it all out: they're the experts and it's not possible or healthy to fight such inhumane bullies like the ones you're dealing with at school. It simply is not your job to search for forms, or to explain the law to the school. As a cancer patient, it's your job to be kind to yourself and to put yourself first. That's my view anyway xxx

@MothralovesGojira Have they actually offered you an open and good discussion about radiotherapy, to explain where they would be targeting it on your body and how many sessions? They absolutely should! Along with why they think you'd benefit from it such as what could it achieve physically now and future statistics. They need to understand why you don't want it, and should listen to you.

Then it is up to you to decide what you want to do with your informed decision.

@SummerCycling yep, that's exactly the line I'm going to take if they're as off with me as the HT's "we'll take advice from HR if you feel you need support" suggests they'll be. I'm not trying to be difficult at all, but they seem to think I am & they don't seem to know the law/my rights 🤷‍♀️

@lucysmam With HT do you mean Head Teacher? It sounds as though they could be massively minimising your diagnosis, treatment and level of conscientiousness.

When I was initially diagnosed with breast cancer and told someone, they said I'd be fine and it was lucky it was just before the summer holidays because we'd still be able to go away in August once the treatment had finished.... my prognosis was actually poor and my treatment plan was for 6 months chemo, a year of immunetherapies, surgery and 3 weeks radiotherapy over one and a half years or possibly significantly longer if the treatment didn't work.

That person had assumed my breast cancer was like the majority of breast cancers ie lumpectomy and possibly 5 days radiotherapy or maybe just a lumpectomy with possibly a daily tablet. That is the public impression of breast cancer because it is true for most breast cancer patients. It could be that your HT is ignorant and thinks that too.

Either way, the HT and school need to be told in no uncertain terms that the way they are treating you is unacceptable and against the law. The 6 weeks of no days off sick is outrageous and shows complete lack of awareness of decent behaviour or the legal protection cancer patients are (thank goodness!!!) provided.

Keep us updated xxx

@SummerCycling I did say to my colleague who was asking what sort of response I'd had that I wondered if, beacuse I look alright (other than the stupid hair 🙄) they sort of think I am alright & it's all over and done maybe 🤷‍♀️.

I'll keep you up to date - this little corner of the Internet keeps me sane sometimes!

(Yes, HT = Head Teacher).

@lucysmam Yes, I've also found some people go too much on how we look. I look so well apparently, but it's thanks to Estee Lauder foundation; when I don't bother putting that on, I get asked if I'm feeling ok.

Please do keep us updated.

@SummerCycling
The hospital have offered nothing by way of even trying to ease my concerns about RT - this or last time. All they keep repeating is that it's safe. Um... no it's not - your hospital killed my SiL and then it's silence.
I really had to push for them to ask if oncology would see me before I make a decision on what to do about surgery. They are very reluctant for you to have information on treatment options. I just don't understand why. I just want to know: if this happens then this is what you'll likely be offered; if that happens then this is the likely course; if this occurs then these will be the options etc. It's not that hard but the doctors just hand out minimal information like a sweetie ration and minimise the likely outcomes. It's like being treated like a child. DP hasn't sat in on these consultations before and he's always the type to see both sides evenly but he's shocked at how dismissive the doctors are and how they rebuff my questions. They don't listen and they definitely don't like me pushing back or asking the difficult questions.
It's a shit show as the two different hospitals will not work together - one does the surgery and then you get sent off to other other for further treatments. They have weekly MDT's but this week's doctor wouldn't tell me what the oncology part of the meeting said about my treatment plan. How can I make an informed decision without adequate information?
I do not trust them to offer the correct advice or tell the truth. I followed their recommendations to the letter last time and later they admitted that they had misled me deliberately but then wouldn't explain why. Things went wrong last time and the lies to cover up lies and mistakes were just unbelievable. I didn't complain, ever, as I just wanted to finish and get on with life. I have asked for clarity about what happened last time and how it can be avoided this time and I'm being stonewalled.

Hi all, I'm 40 just diagnosed with grade 3 breast cancer. It's in my breast, and also one lump under my arm and 4 nodes affected. I've got a CT scan this week to see if it's spread. The waiting is torture!!! I just need it to be treatable. Any positive stories after having similar would be most welcome ladies 😳I've got to have chemo that's for sure and I just want to get started with treatment tbh.

My DH also has YOPD! what are the chances for us - such crappy luck. I'm grade 3 BC but don't know anymore than that yet. Good luck to you xx

Just been for an ultrasound. I’ve a huge nodule on my thyroid and another couple of small ones.
am shitting myself

@LemonDrizzle10 Very sorry to hear that. It is very scary. I have just been through exactly that process. Multiple thyroid nodules, followed by biopsy of the biggest one which was suspicious. Underwent a hemithyroidectomy which turned out to be fine. Thyroid nodules are very common, but it is absolutely right to have these checked out. A key thing to also keep in mind is that thyroid cancer is one of the most treatable there is. Surgery alone can often be enough. And, if my experience is anything to go by, surgery was very simple and quick to recover from. Fingers crossed for you! One step at a time..

Thanks @isaxx that’s exactly what I need to hear right now. One of the nodules is huge - terrifying!!!