Cancer Support Thread 98: support for those diagnosed and going through treatment

[FcukBreastCancer]

Hello 👋

Hi @Ventress I’m ok.. I guess. Just thinking through the op which is now becoming more real. Feeling a little bit tired ! How are you? You’ve not had much time off before having to throw yourself back in to your job? How does time off work? Do you get a set amount of sick leave per year?I need to look at my own job policies too ! Xx

Hello everyone!! Hope your weekend is peaceful! Nice to meet the new faces but very sorry you ‘ve had to join the club xxx

I can understand your worries and concerns @Nonamelass. We are always here for you 🤗

I realise I don’t have direct experience but my sister had a full mastectomy on one side (they wouldn’t do both!) and all the lymph nodes both sides stripped out at the same time. She said it was difficult- particularly showering. But it was just a week or so of the district nurse coming to change the dressings and of the cross body bag with the drains. It may be longer for both breasts but I know you’ve already had some of the lymph nodes out so maybe it won’t be longer?

The outcome will be better for you I’m sure.

The lady on the other thread looks amazing! I’m not on that thread or I would barge in and tell her so. But it would be a little weird if some random started commenting on her chest! 😂

I’m okay, thanks @NonamelassI’ve been doing a lot of admin this week. Plan to go back to work on Monday although I do have three hospital appointments next week so how long I’ll actually be at work I’m not sure!

Tiredness is so difficult - it just gets worse the longer it goes on doesn’t it? I do feel better for having taken a few weeks off. Swapping between the hormone treatments and chemo has screwed me up more than I expected. I have 13 weeks full sick pay per annum and the it goes to the healthcare insurance people which is 75% (so quite good). My plan is to try and stretch the 13 weeks and my annual leave across the year. We shall see how that goes 😊

I’m so sorry that you are here @Connemaraabut welcome to the club! Proton based radiation therapy sounds very 21st century. I’m glad you are getting the genetic profiles you need. It’s very scary when you think that you, or your loved ones, have a propensity toward other cancers.

I must say the whole “healthy eating” has rather passed me by. My sister was a vegan before her breast cancer. She’s now just a vegetarian. I think it was just the family meal juggling that got the best of her, rather than the diet. Please stay and post more. I’d love to hear about your family, and yours @samlovesdilys

I am great with squash too. Currently my favourite is the Robinson apple and blackberry! Over Christmas I lashed out on fever tree lemonade and lime with soda water. I still miss wine though!

I agree about chemo.

@waitingforthedaffodilsI’m no expert but it does sound sound as though the treatment is helping. The loose bowel and grumbly tummy don’t sound good but they do seem to be part and parcel of treatment generally (even my breast/lung is affected) so I’m not surprised yours is. Good that it feels smoother though. Hopefully that will carry on. 🤞

Your family sound lovely @Sbmpp🤗

🤣🤣🤣 for sure !! You can still comment though 😊
. Yeah and I was saying on the other thread the reconstruction ( in my case) sounds really daunting, its a very long op with lots of possibilities for side effects after as far as I can tell so nope I’m not putting myself through that for just cosmetic reasons at nearly 60 ! I could tell the lovely surgeon agreed with me 🙃

Won’t have lymph node removal ( already done years ago) so hopefully it’ll be easier because that was the more uncomfortable than the actual lumpectomies at the time
How are you feeling ? Xx

@Ventress
Yep tiredness needs getting used to and have to pace yourself I find getting outside helps but its not always possible.

So is the 75 percent for as long as you need it? Is is of your gross or net salary ?( it makes a big difference in France cos we pay alot of NI) I think I’ve got three months but loose 10 percent then if I need more I’ll have to check company insurances and stuff. …

Yes 75% until 65 years, although they do deduct my car allowance too. I think that’s about £4.5k per year. It’s 75% gross. I could live on it anyway 😊 Yours sounds slightly more punitive because of your NI. I think it’s definitely worth checking (can you tell I have been dealing with the IFA and Solicitor this week !)

Hi to all on this Saturday morning which I think is now evening for you (I count on my fingers every post I read ie: add eight hrs to our time). (Sorry this is a bit long) Anyway, yesterday afternoon I received a phone call from the infusion center that my regular chemo appt (due Monday at 0800) is being canceled because of an upcoming nursing strike possibly starting. I go to a hospital in the city I live in. I was told that my oncologist did not want to delay my treatment and I would be going to a neighboring city instead and to keep my phone nearby so as to not miss the phone call. As you have probably guessed no one called. There is no way to call back . The best I can do is email my oncologist who won’t get the message until sometime Monday. The person I spoke to yesterday said my Dr. did not want my regular chemo delayed. The type of cancer I have is difficult to treat. (Actually my treatment is palliative and I just don’t want the cancer to get its tentacles into me any further). So here I sit just a bit angry and sad. (Fwiw the RN’s make about $70/hr and staffing is better than what what state requires!!!)(30 yrs ago I was making about $30/hr as an ER RN)(I’m trying to keep my mind on other things). We’ve never met but you all sure do have a place in my heart ♥️.

It’s probably the middle of the night for you now @Sbmppbut I am so sorry that you are going through this. I am giving you a virtual hug ❤️ and my English dander is up for my cousin from across the pond 💐

@Sbmpp that sounds like they hadnt actually arranged anything with another hospital, I hope you get it sorted out - even if you get a phone call monday morning and are able to go - where is the next likeliest place is it far?

@cantbelieveIamhere Thanks for the support ♥️. Actually my insurance is an HMO and the next closest infusion center is maybe a 30-40 minute drive depending on traffic. I agree with you re:no one has arranged anything 🤷🏻‍♀️.

The strike is on. No chemo appt 🤷🏻‍♀️😵‍💫.

I have now been notified of latest chemo etc. The infusion center said they’ve been trying to contact but no answer from me. They contacted my husband and daughter!! Apparently I had blocked them (?). They said I didn’t reply to voicemail (I checked email, voicemail and text regularly)but no response. So I have unblocked the block. I have sent my dr a message to ask if I need to repeat my lab work because otherwise the labs will be 4 days old. The union members have voted to strike. They consist of nursing, pharmacy, and so on (fairly inclusive). Anyway, I just felt that I needed to give them credit for trying so hard. I sure wish they had contacted my husband over the weekend. I wish the nurses were happy making over $70/hr. And now I’m off to fight cancer another day (Wed).

Hi everyone ! Hope you’re all doing ok. @Sbmpp gosh what a stressful muddle over the chemo! That’s all you need . Glad they got it sorted out in the end, its a pain having to rearrange bloods though.
@Ventress you sound well covered by insurance 💕 You have the option to be off as much as you need / want which is fair I think.
i’ll be covered for 90 percent for three years from what I’ve understood. I retire in 4 years so like you we’ll manage unless I carry on ordering so many clothes 🤣 How are you feeling?

I saw the anesthetist ( can never spell it )had an ECG then the psychologist at the hozzie yesterday. Very efficient. Psy says she agrees that I understand and have thought through the double mastectomy. Will wait for staff meeting tomorrow to have it confirmed. It’s all a bit daunting but it’s the best choice for me. There were some younger people around ( it’s a cantre specialised only in cancer) and it breaks my heart. I know the odds of getting over cancer are much higher these days but still to have it looming in the background so early on in life is hard.

waving from across the Atlantic and the Channel from rainy France and sending best wishes to everyone xxx

Oh goodness @SbmppI hope you get your chemo on Wednesday. Definitely check what numbers they have for you and that they are unblocked. Good luck my lovely 💐

Your phi/ healthcare sounds very good @NonamelassPerhaps I’m fixated on this but I just want everything straightened out and know that if something were to happen to me that DS would be sorted out financially.

I’m glad you have seen the psych people and got that part sorted out. I know that I would feel exactly as you do in your position.

I’ve gone through all of my emails and teams stuff yesterday but I can’t get logged into the network as my password has expired. I’ve asked my manager to speak to IT and get it reset. Fingers crossed.

I think I’ll ask for part time hours for the next month. Sort of ease back in.

Gosh yes @Ventress if I were you I’d take all the time I need/ want off if it’s financially possible. I totally did that for my last two episodes. I think we’re allowed a bit of slack considering what we are going through with cancer tbh. Obviously sometimes its not possible financially or for career minded people.
I still haven’t done a paper file of stuff but will at some point. I keep telling DH about this or that but he gets a funny look on his face and tells me not to be so dramatic.( dunno why I’ve changed
to ittallics here 😀) My DIL is legally trained so I’m counting on her being on the ball over insurances if needed ( touch wood but anyway no one lives forever)🙃 but I will do that file.
It’s kind of showing your love making things as easy as possible isn’t it? I totally understand you want your son protected financially and once you’ve got that sorted you can relax xxx

Hello everyone can I join?
im waiting for oncotype results to decide right chemo then radio, or just radio.

Hi @ohdoriswheresthesalad of course you can! Try to gather as much info as possible - I was surprised at how much new info there was now compared to summer 2024 when I was first diagnosed!

5 radio sessions done and I'm shattered. And apparently this is just the beginning.
But I'm ticking them off one by one.

Hope all are doing well.

@ohdoriswheresthesalad welcome. How long until your result? Mine went from UK to US so took a little while.

I don’t know if I want information 😅

My 2 weeks are Thursday. I called today and they said they have MDT meeting’s Wednesday mornings so if it’s not back by end of day today then it’ll be discussed next Wednesday.
what biology was your cancer for no chemo?
mine was grade 1, 1 microscopic 2mm node involved, margins taken and 1.9cm tumour xxx

I think radiotherapy is high dosage these days? Less sessions but more concentrated?The whole going hanging around for appointment not moving too much during the session and then traveling back is tiring too. I had the huge advantage of being a ten minute drive away ( and a wonderful free patient dedicated car park) from mine which made it alot easier. Some woman were coming from miles away with long journeys which is knackering in itself. How is your skin feeling? Not too warm? Xx

Welcome! We’ve already met on your thread 😉

We have indeed! 👋
fingers in all pies me 😅