Page 14 | Cancer Support Thread 94 - Sweetness and light - the two noblest of things.

Original poster

LemonDrizzle10 · 18/05/2024 11:13

@MothralovesGojira well done (understatement) for getting through that phone ordeal. You deserve a medal 🏅
Hope you’re all ok.

OP posts:

catmomof3 · 18/05/2024 11:46

@MothralovesGojira He really was just weird and loud and my mum even sent me a text after to say she could tell if I hadn't of had that lorazepam I would have kicked off lol. I don't think he is there next week as my chemo is at 2pm and he only stays till 12 thank god.

JlL2013 · 18/05/2024 12:18

@catmomof3 yep mine was 7 hours for Cisplatin. They will sort it for you though, but might be worth asking the chemo nurses next week how it's going to work. You might be able to do the Radiation whilst attached to the chemo drip (not actual chemo but all the fluids they give you) Don't worry they will sort it out for you.

tothelefttotheleft · 18/05/2024 13:40

@MothralovesGojira

Are you up to making a complaint about the call? That's awful.

catmomof3 · 18/05/2024 16:31

@JlL2013 I will do that thanks, still shocked it's nearly 10 hours long. Praying we don't have a heatwave I'm gonna be sweating lol

MothralovesGojira · 18/05/2024 16:56

@tothelefttotheleft
No, we're not going to make a complaint as nothing will happen to the bitch. She probably works for one of the companies contracted to run services for the DWP and won't even get a slap on the wrist. I also don't have the head space to make a complaint and get into the he said/she said bullshit. If I'm unlucky enough to ever get her again then I will complain but otherwise I believe that there is a special place in hell for people like her.

tothelefttotheleft · 18/05/2024 18:37

MothralovesGojira · 18/05/2024 16:56

@tothelefttotheleft
No, we're not going to make a complaint as nothing will happen to the bitch. She probably works for one of the companies contracted to run services for the DWP and won't even get a slap on the wrist. I also don't have the head space to make a complaint and get into the he said/she said bullshit. If I'm unlucky enough to ever get her again then I will complain but otherwise I believe that there is a special place in hell for people like her.

I totally understand not having the head space or energy for a complaint. I think all the calls are recorded though so if you change your mind you'd have that evidence.

somewhereonthe517 · 18/05/2024 19:36

Ive not posted before but hoping for some advice. Been for my biopsy result appt and it was confirmed as cancer. One lump i could feel and another smaller one found on ultrasound. One node involved. At the initial appointment 2 weeks ago i was so terrorized they found 2 bits i asked the consultant for a CT scan which she wasnt suggesting at that time. She didnt seem to phased as neither bits came to more than 5cms altogether. Fast forward to this weeks results appointment with another consultant and although my cancer grade came back as 1 the CT scan has picked up other inconclusive things including womb thickening?? and a query in bones. Terrified is an understatement. Theres no talk of a masectomy until ive had further tests. Has anyone else experienced this? Not sleeping and feel like im in fight or flight the whole time.

somewhereonthe517 · 18/05/2024 20:48

Its the bones thing that scares me most.

somewhereonthe517 · 18/05/2024 21:33

but ive got a gynea check first?

Daisy03 · 19/05/2024 07:34

Somewhereonthe517 I’m so sorry this is happening to you.
I'm in a slightly different situation in that I’m newly diagnosed but my MRI breast scan saw something on my liver and my lumpectomy is delayed until they have fully investigated that. Now it could well just be something simple however it’s the threat that actually it could be something sinister that I can’t let go of.
All I can say is try to focus on the positives, that it’s good these things have been discovered and they are being looked into rather than just being left alone. It’s the waiting and the unknown that is the most frightening part, once you know what’s happening you’ll be able to deal with it all.
Im just trying to keep as busy as I can in the meantime and get on with life as it is, though I’ll be honest my sleep and mental health have taken an absolute battering.

somewhereonthe517 · 19/05/2024 08:05

Daisy
Thank you for replying and sorry you are in a similar state too. I just cant get the fact out my head its already in one node and they dont seem to be interested in moving me along.. surely if its in a node it could be everywhere? Feel like a parcel being passed around and they've decided no urgency as its already spread. Ive been given anastrozole but thats it.

Daisy03 · 19/05/2024 08:28

Somewheronthe157 the lack of urgency I think is the hardest thing. I first presented at the gp on the 12th of march and I feel no further along. Every test takes 2-3 weeks before I get a follow up and then it appears they only order further tests on the date of the follow up.
i currently have my lumpectomy booked for the 31st but have been told that will likely be cancelled as my liver ultrasound and/or biopsy is only a week before and they’ll have to wait for the results before they can perform it.
everyone has told me this is the hardest part but it’s going on for a very long time. Fingers crossed for both of us our outcomes of the further tests will be ok. I do wonder at the effects long term of mental health. None of the consultants or others I speak to seem to have much compassion whilst I feel I’m drowning.

somewhereonthe517 · 19/05/2024 08:48

Daisy
I know we must be two of so many going through this so I cross fingers for us both. Im still in a daze after consultants appointment so going to ring the clinic with some questions tomorrow. Havent told kids yet and trying to be normal is very hard. I hope you get tests results quick and can move on to surgery..it sounds like yours wont be long even if its not the 31st.. may only be delayed slightly.

somewhereonthe517 · 19/05/2024 09:23

Can anyone further down the line give advice on their experience of lymph node involvement ? The consultant told me its a grade one cancer but wont stage me yet

Enigma52 · 19/05/2024 09:48

@somewhereonthe517 Hi and sorry you find yourself here. The waiting and not knowing is brutal and you will have so many questions.

You have one node affected. When I had my primary breast cancer, several nodes were affected. I had a mastectomy first and then a second surgery, to have full lymph node clearance . Mine was stage 2B. I'm guessing with you, they will want all results back and then your team will gather and formulate a treatment plan.

It may seem like there's no urgency, but your team will be busy behind the scenes.

Your CT has picked up womb thickening. How old are you? Are you on HRT at all? Have you had any gynae issues/ unscheduled bleeding or pain? They are will probably do a biopsy to check the health of the womb.

To say " a query" in the bones and leave it at that, is stressful to manage, I agree. Unfortunately you are going to have to wait until all results have come back and then you will know what you are dealing with.

Do you have a good support network? Perhaps ask the GP for something to help you sleep? Do you work? Would it help to get signed off for a bit, to give you some breathing space.

Keep us updated, this is a lovely supportive group, who all know how crappy the waiting game is.

somewhereonthe517 · 19/05/2024 10:03

Enigma
Thank you for such a lovely reply.
I find myself a bit isolated from family and friends as i take it all in. I can see this spot being a lifeline. Im 51 and post menopausal. Was on HRT until my hospital referral as paniced and stopped right away.. so been stopped only a few weeks. No other issues re bloating or bleeding. Just worried that all these tests delay action with the boob. I asked for the CT scan initially now i wish i hadn't bleepin bothered. Did you have one as part of primary diagnosis? Would they do one anyway once lymph nodes involved? Thank you for being there ..and ps going to ask gp for sleeping help!

Enigma52 · 19/05/2024 10:16

@somewhereonthe517
Yes, it's a horrid journey and family and friends, as much as they want to help and may mean well, often don't know what to say in these situations. They will be afraid and you are only just processing all this information as it is being drip fed to you.

The thickening of the womb, could be down to the HRT. Were you on progesterone also?

I know it's hard, but try to have faith in your team now. They will be doing everything they can to get a good outcome and IF things are more complicated, they will have a solid plan.

I didn't have a CT, just biopsy, mammogram and ultrasound. CY was never mentioned and I didn't ask. It could be standard practice now ( my primary BC was 2009).

Definitely get something for sleep.
Stay hydrated and eat when you feel like it. Keeping busy can help too. Fresh air is going for the MH.

We are all right behind you 🌺🌻

somewhereonthe517 · 19/05/2024 10:24

Thanks Enigma
I will try to sort the sleep thing and concentrate on getting to the next stage. I was on combined HRT est and prog. I honestly cant see why this is connected to the boob situation but im no medicine woman.
Thank you again for replying.means alot x

MothralovesGojira · 19/05/2024 11:58

@somewhereonthe517
Hello and welcome to the place where none of us want to be!
You will find a great community on here as usually there is someone around who has/had a cancer similar or at the same stage as you've found with @Daisy03 and we're at different stages but we support each other as no one understands cancer quite like those who are in the same position.
As you're new on here we have some mantras:

Don't google! It's best to just check factual info on places like Cancer Research, MacMillan and Maggie's. Breast Cancer Now can also be informative.

Don't borrow tomorrows worries - stop thinking about the what if's and what could happen. That will drive you nuts so stop planning your own funeral. MacMillan have some excellent services available so have a look but they do counselling for you, kids, DP or family. There should be a branch at your hospital and if you're lucky then you could have a Maggie's Centre too.

Be reassured that your team is doing lots behind the scenes but if they find anything remotely dodgy they will investigate because their objective is to treat you correctly. They have put you on anastrozole and that's good because it will slow any growth etc while they investigate.

You have to be your own advocate when dealing with the professionals. Always take a notepad with you and write down what you're told/advised and if you don't understand something then ask right then or ask your cancer nurse.

If you need reassurance or a vent then come on here. If you want to reply to or contact a particular person on here then put @ followed by their name selected from the drop down menu/or put the first three letters and the name should come up.

I am Mothra who @Enigma52 who designated the thread CGM - Cancer Group Mum. I am on my second trip of the breast cancer merry go round with a hormone- HER2+ tumour. I am also currently being investigated for ovarian and stomach cancer along with an issue with my lungs caused by my treatment last time. I have three DC's of whom two know about my new cancer but the youngest still needs to be told but they've got some issues so I need to tread carefully. I was diagnosed in Feb with a 7cm tumour but I have delayed treatment because of youngest DC's exams and because June is music festival month and nothing is going to make me miss Limp Bizkits. I due back at hospital in July to be rescanned and discuss treatment if I decide to have any.

Others will be along to say hello and offer advice as you've already found. Hopefully you'll have a short time with us before we wave you off to the recovery thread run by our lovely @TopOfTheCliff who is holidaying in Italy as we speak while recovering from her second innings with breast cancer.

Enigma52 · 19/05/2024 12:13