Cancer Support Thread 95 - No googling allowed 😊

[LemonDrizzle10]

New thread - we need to stick together!

@BatshitCrazyWoman so sorry you have been feeling rotten. Try to increase your water intake to 3,000 ml (3 litres) a day, it really helps. Cutting out acidic and greasy food - tomatoes, citrus, fries food, coffee - really helped reduce heartburn for me. But do tell your medical team as they can also prescribe medication to help with it!

@dancingwhilstfacingthemusic Its’s the same old answer: everyone has a different response, and it changes as we go through treatment. For me food tasted a little odd, my mouth and throat were sore, horrid reflux, some nausea, ltd appetite. Gut somewhat upset throughout. Steroids impact episodic and cumulative. Grew to hate them, whinged about it to oncology team and they were reduced.

My take away and advice is: record how it’s going and be very, very open and clear with your oncology team about side effects and impact. With a bit of luck they will be supportive. And give you the drugs.

And then, like Top says take the drugs, all of the sodding drugs, the anti nausea, laxatives, dry eyes, dry skin, the steroids, anti diarrhoea, pain relief, jab yourself in the belly, all of it. JFDI until you’re done. I write as a resolute non taker of so much as a paracetamol in non chemotherapy circumstances.

Hope your surgery is as straightforward as these things can be. And I hope you weather the chemotherapy as well as possible.

Congratulations, what a brilliant milestone! Thanks for sharing this with us too. It's really cheering while I'm in the middle of treatment xx

@londondragonite A favourite oncology nurse said it’s currently anecdotal, however there is some research being done, and yes to water. She recommended a minimum of 1litre during chemo treatment plus 1 either side.

thanks, all

@TopOfTheCliff 🎉🎉🎉
50 months is Wonder Woman status surely.

I've eaten a bit more today, and the reflux hasn't been as bad. Water does have to be very very cold to drink! Still feel a bit flu-ey and spaced out. Hopefully I'll be a bit improved tomorrow.

I've read that lots of people finding the steroids made them hyper, but I've just been tired!

@LemonDrizzle10 I am just an overachiever 🙄

@GrannyGoggles I decided it was time to wean off unnecessary pills so I have given up my very low dose amitriptyline that was soothing the post op nerve pain in my armpits and neuropathy in my feet. DH was being rude about how many tablets I took. I am now just on one exemestane at night. As a result I am not sleeping well and he is complaining 🙄😂 but it is good to be less dependent on prescriptions.

@TopOfTheCliff an overachiever!
need to get it on your CV pronto.

Hi all
Not at all sure how to feel about things anymore. I have 4 masses in my left breast - two confirmed as cancerous, and two that only showed up on an MRI. Rather than having these two biopsied as well, I'm going to go ahead with a mastectomy I think - hopefully with reconstruction. The surgeon seems to be recommending this.
The largest (and this is one of the confirmed cancerous ones) is something like 2.6cm or maybe 3 cm.
The biopsies show grade 1, HR positive, HER negative.
I thought I would have sentinel lymph nodes removed a week today, and then hopefully soon after the mastectomy with reconstruction or without (may be delayed for radiotherapy depending on the lymph node results).
But I've been offered the chance to be part of this trial: https://www.nds.ox.ac.uk/research/surgical-intervention-trials-unit/restore-b
I think that if I take part, then I will have a mastectomy with immediate reconstruction and lymph nodes out all at once, and there will be a 50-50 chance of the mesh being used.
I had quite a lot of questions about the trial and put them in an email (as the consultant's secretary suggested) but maybe asking them has delayed things - or at any rate, I don't yet have a date for the actual mastectomy, and no appointment to discuss until next week.
I'm just starting to panic that this is all taking too long. The cancer was diagnosed mid-August. Shouldn't the mastectomy be happening ASAP? Or am I panicking unnecessarily? I haven't yet made any attempt to hurry things along, but when I heard that I don't have an appointment this week, and we still don't know when the mastectomy can be scheduled for, I started to worry that I need to be doing something to make things go quicker, though up till now I've just taken a lead from the experts. This makes things much worse - it was reassuring before to feel that I was in the best hands etc, but now I'm worrying I need to be doing something differently?
I think I've also frightened myself by googling about the really long term stuff... I'm trying to chill out again and have emailed Macmillan instead to ask about that long term stuff. It's just all so scary.
I also can't concentrate on stuff in the normal way - I feel like my mind is falling apart sometimes!

breastcancerpanic I can really relate.
I was diagnosed mid August and things seemed so straight forward then.

But now I'm having my biopsy sent to America and they've found two further suspicious areas in my other breast so I'm waiting for a MRI led biopsy.
So it's back to the waiting game again.
I'm also at a slight loss in that I don't have an appointment with my consultant this week as we're waiting for the results and biopsy.

I'm feeling very frustrated and stressed.

I did get a lovely letter from my consultant this morning covering what was discussed last week and she'd added a very thoughtful paragraph saying she knows I'm getting anxious about no action, and reassuring me that these steps are necessary to give me the best treatment.

That helps in a rational sense, but I hate the feeling that I can't plan anything.

And constantly getting well meaning messages from friends and family asking me what's happening 😞

Sending love to you both. I’m getting anxious ahead of Friday. I know they will use mesh in my reconstruction so was interested to see the trial. I’ve just had the letter from my last appointment at which we decided between flat, immediate reconstruction or later autogolous reconstruction. However, the letter also mentions a discussion of immediate reconstruction using diep flap, which we didn’t discuss and certainly isn’t on the notes I had from the mdt meeting. It’s so confusing. I don’t think I’d be doing anything different - so hard as a lay person to make the right choice.

I certainly understand about the concentration aspect too. It is all So Much!

dealing with friends and family - I’ve limited who I’ve told as I’m having enough in dealing with my own feelings. I’m planning on letting people know that I welcome messages but may not be able to respond for a while. I do find messages overwhelming as I come up to operations and also feel a pressure to let key people know once I’ve come round. I guess setting expectations and giving a key contact to let people know is my way forward.

@drivinmecrazy @dancingwhilstfacingthemusic sounds like this is a shared experience!
I really want to know when surgery and any other treatment will be happening. My life is on hold and I'm a worried mess until this is sorted! (And terrified that it might not be 'sorted' at the end of the day but rather something a bit more nuanced - all the more reason for this to all hurry up I feel!).
I think while I'm waiting I need to really take control of myself. Doing nice things and having company seems to work best... today I'm at home and most of my work has been reallocated so I'm free to spiral... I need to get doing something practical like hanging up the washing and eating lunch...

@breastcancerpanic
I think what you are experiencing in questioning timings is completely natural. I was diagnosed mid May but because of various findings at the initial clinic I was subject to a barrage of tests which took several weeks. I did panic about how long this was taking and constantly phoned the BC nurses trying to chase up what was happening. Now I think looking back they were on my case and things were happening in the background it just felt slow at the time. I had a Mastectomy in July so it wasn't fast in my eyes but the team assured me they knew what they were doing time wise. I was given anti hormone tablets (Anastrozole) whilst the investigations took place . I was also grade 1 mutifocal hr+ her2- and it was found in my nodes.

I am now doing chemo and will have radio therapy and go back on hormone tablets etc. I replaced my worries about 'when will you crack on with the Mastectomy' to 'why isn't chemo starting sooner' and alot of lovely ladies on here advised me re healing times etc. When you're alone in your head waiting all the time it's horrible but your letter confirms they are aware of your anxiety and when things move..they will move quick.

Sending love and healing thoughts to all.

@TopOfTheCliff that is an absolute milestone. Brava!

today I reached a milestone. Today was the day my hair has started to really shed.

I also had bloods done for chemo tomorrow but have been told that white cell count and neutrophil count is too low. So will try again next week.

I’ve had a lovely day out at the Boat Show today and saw this lighthouse. The message was perfect! One day at a time folks!

There was a discussion about cold cap and EC chemo a couple of pages ago. I just thought I’d update that my hair has started to come out quite a lot. I think I’ve lost about a fifth to a quarter of it so far. That started to come out 2 weeks after chemo treatment. I was planning on doing cold cap again but I’m not sure now. If I lose the same amount each session it’s pointless but if I was left with what I have I’d be happy.

it was still coming out this morning quite a lot so decision might be made for me before my next session on Friday.

I’m glad (in a sort of weird way) that this is not just happening to me. If that makes sense. It’s shit it’s happening to you too. I wouldn’t be that bothered if it was my leg hair….! which appears to be standing strong. Ffs.

I’m wondering how stubborn my chin hair will be!

Haha I know leg hair staying strong here too! Although I find if I pull them they do just come out so expect they will fall out soon as well.

I thought maybe it wasn’t going to happen because my armpit hair fell out first but it’s just taken a few days longer to start. Pubes as well have stopped falling out- I’ve still got about half of those left I wish I could pick and choose!

I think that cold capping helps protect your follicles from the chemo so that regrowth will be quicker and stronger. That's what I've read, anyway. I'm sticking with it, I think.

@dancingwhilstfacingthemusic haha!

@aodirjjd true! I also have what the oncology nurses call “chemo rhinitis” aka the sniffs because my nose hair has apparently made a run for it.

@BatshitCrazyWoman i think I’m sticking to the cold cap. I’d also read that it can help with re growth. So I count that as saving my hair.

I knew it could shed. It’s more the realisation that it’s happening and it means the treatment is working and I might look like a “sick” person. Does that make sense?

i have a hair cut booked though. So going to say goodbye to my below boob length hair for now. Taking control. Not shaving my head. Just taking it shorter. More manageable.

I raised the benefits of regrowth with oncologist when I first discussed cold capping and she said there is no benefits and the hospital “won’t allow “ someone to cold cap if there is little hair left. I know that doesn’t fit with what you see on Google but I think I will just have to accept I won’t have the option to do it just for the benefit of regrowth

I do understand @ememem84 I feel the same, and am awaiting with dread The Shed 😞 I'm planning on getting a wig, so I can feel a bit more 'normal'.

I’m undecided about a wig. I sort of feel that it won’t be my hair (although I’ll have paid for it! Ha!) but at the same time might be an opportunity to change things up. Try a different colour or style.

DH suggested I just buy loads of wigs and be a different person every day.