Cancer Support Thread 85 - Hoping for a positive 2023

[AGreatUsername]

Starting a new thread as the old one is almost full.

Welcome one and all, this is a thread for those with cancer and those who are awaiting tests for cancer. We offer support, a place to rant/vent/cry and ask questions without judgement. As always maybe we can do a quick who’s who at the start of this thread for newbies.

Heres hoping for a positive 2023 for us all.

Hi everyone - only just plucked up courage to post - but have been reading. I'm still in the very wobbly stage a week post diagnosis - googling and scaring myself witless.
Here is my diagnosis (it's terrifying to write it down!). 35mm ductal invasive, all negative except HER, which I am still waiting for an inconclusive test to come back. Lymph nodes clear on ultrasound and MRI but not yet got the biopsy back - terrified about that! So it's clearly not the best of types. If anybody has anything positive to say then I'd really so appreciate it right at the moment! Treatment plan is chemo first then surgery. Everything is a haze right now.

@EdwardTheBlueEngine hi ❤️ I’m sorry you find yourself here with us. Believe me (although I didn’t believe it myself when I had just been diagnosed) this is the worst bit. Once you get going with treatment, it doesn’t seem as scary as the waiting and the unknown and the sheer shock of it all. Also, DO NOT GOOGLE. There be monsters.

(I was advised by my team not to read cancer forums either - I don’t include this thread in that! I guess some may find them supportive but I think it was good advice in my case, I know the ones I found when I was 3am googling/doomscrolling didn’t help my state of mind)

@EdwardTheBlueEngine welcome to the thread nobody wants to be on. Like @WorryMcGee says this stage is oddly the worst part of the whole business. What you have is a common treatable cancer with lots of options and it sounds like you have been picked up early with an excellent prognosis. This is bread and butter for oncologists so they will be gathering information before telling you what your personalised treatment regime will be. Everybody is different so don’t compare. It’s a horrible shock and your life comes screeching to a halt but it will continue with a few restrictions on you as you get through treatment. How do you keep busy? It helps to distract yourself from dwelling on things if you can.
Sending hugs x

Thank you so much @WorryMcGee and @TopOfTheCliff I feel so much better after your kind words. Once I get myself in order I hope I can contribute to the thread with you all.

For me I am thinking that working is currently the best distraction - but I guess that will become difficult through chemo. Did any of you successfully work part-time throughout chemo or does it complete floor you?

@EdwardTheBlueEngine I think it depends very much on what your job involves. I was a GP so I was told to stop work immediately and expect to be out of the practice for at least a year (Triple positive BC) so I stopped the next day. This was during the first Covid lockdown so there were concerns about infection. Those who work in health care and schools seem to be advised to stay home, and the sick pay is good and makes this possible. People who are self employed or do office work seem more likely to carry on, maybe working from home. It can help to keep busy for some. There isn’t one answer.

@EdwardTheBlueEngine welcome to our lovely friendly thread, sorry you find yourself here. As the others say, you're at the worst part currently, once you get going with treatment, honestly you'll feel better. I have ovarian cancer so can't help with the technical side but lots of us have BC and are so knowledgeable. One thing I would say, is as soon as you have a formal diagnosis, to apply for free prescriptions. It's just a simple form from the GP, you just tick the 'cancer' box. You may know about this already but I found out by accident after many months of paying for mine and one week having had12 items!

@EdwardTheBlueEngine I’m on maternity leave, but I’ve managed to look after my baby, do some volunteering bits and go running/cycling. I found the first cycle of both (I had EC first, on paclitaxel now) the worst in terms of side effects, I’ve been up and about relatively normally the following day with all the others.

@EdwardTheBlueEngine I've just thought of something else. Many well-meaning people may advise you on the benefits of eating certain things such as leafy greens and may warn you avoid all 'bad' food and especially sugar. I would say to eat as healthily as you can but allow yourself some treats, it's miserable enough being a cancer patient and you need to keep you strength up. I think that much of this advice is borne from their own fear of cancer, I'm vegetarian and eat as well as I can but just love cakes, biscuits and sweets and I can see them thinking 'well, that's where Fanta went wrong'. For context, the food trolley at my chemo unit, which comes round roughly hourly, is laden with Costa-style cakes, nice biscuits, crisps, jellies, trifles and other puddings as well as sandwiches, soup and fresh fruit. The staff encourage non-stop eating from it and it occurred to me that this must be 'permitted food'. I got so paranoid I checked with my oncologist who said that cancer cells will just find another source of energy in the absence of sugar such as protein or fat.

Ive just eaten a massive bag of chocolate raisins so I cant say Im watching my diet too much. I havent had a drink since Christmas and thats surprised me. I just havent fancied one. Your tastebuds do change. Thats been my biggest side affect after the first round. A horrible metallic taste in my mouth. Also, I cant stop eating and blowing off. It actually wakes me up on a night 😮

I've had two people already advising me on diet @Fantasea - it's interesting that there is no research to support it - I shall be ignoring them then! Not looking forward to the metallic taste @EachandEveryone , thought I'd had the last of that with pregnancy.

Thanks for all the advice everyone - good to see lots of you managed to do some normal things during treatment.

What a lovely supportive thread.

@EdwardTheBlueEngine the metallic taste is like the one you get in pregnancy and your taste can also be altered. Lots of the foods I previously enjoyed became so unappealing and I started to crave curries, chillis and also lettuce, no idea of the science behind that! I do remember after my fifth chemo I was watching Eurovision and nothing to eat or drink in the whole house was even remotely appetising even though I thought I wanted something. Even water tasted of pond water and in the end I thought Lucozade was my best bet - it was the orange one and I let it go flat which was quite ok actually. When I went onto my current oral chemo, I stocked up on it and it got me over the first few weeks of nausea.

@EachandEveryone I'm laughing at your wind waking you up! I think bowel issues are part of chemo, I have to take daily laxatives with my current chemo and can hear and feel the wind bubbling around a lot of the time!

Been reading through the posts, chemo/steroid insomnia has had me lurking on AIBU for a few weeks when someone mentioned a night shift post. Searching for that led me here 🙂.

Breast cancer diagnosed in October - ER+, HER2- Stage 3, grade 2 multi focal lobular with lymph nodes diagnosed in October. Had 9 of my 15 rounds of chemo today (first 3 rounds were EC every 3 weeks, now taxol weekly).

@EdwardTheBlueEngine i can honestly say the beginning, with all the tests and unanswered questions and no idea what’s going to happen next, worst bit! It’s horrible and I really feel for you.

My advice - you’ll hear lots of new words and phrases, ask what they mean. I took a notebook and wrote them down as they explained, the leaflets are a great resource but you come back from appointments with a mini library and a head spinning. My diagnosis above could have been in Klingon for all I understood it when I first heard.

I have friend who was about a year ahead of me in her treatment, she’s been a lifeline - she’s NED now which has been my light at the end of this tunnel. Best advice she gave me, your boobs will be out at far more doctor’s appointments than you’d ever expect, Get a nice bra cos they’ll always ask to see them when you’re wearing the old, greying comfy one.

Then when this is all over - burn it!

@EachandEveryone i can relate to the wind, I ended up lactose intolerance, a not unheard of but rarely mentioned chemo side effect. Lactose free milk/yogurt has helped, but still haven’t found a plant based one I can stand! And need real cheese so a little stinky I shall remain.

I’ve decided chemo is a bit like childbirth, everyone goes through the same stuff but has a different story.
Happy to share my experiences if it helps anyone.

Nothing about this is great, but a few months in we have found a weird sense of normal and routine that works for our family.

sending hugs to all on here with me.

Ps sorry it’s so long, todays steroids have me a little hyper

Welcome @rollercoastersarenotfun and keep away from the online shopping! Steroids cost me a fortune in late night impulse purchases.
Top x

@EdwardTheBlueEngine I was diagnosed in the middle of Jan. I've found the best place to get information is from MacMillan. I've been on the phone to then several times now. There's emotional, financial and medical support.

@EdwardTheBlueEngine it sounds like we are in a very similar position, I’m just a little further down the road. I was diagnosed with triple negative stage 1 breast cancer in November and will finish my second round of chemo today. I’m on paclitaxel and immunotherapy which is a very aggressive treatment regime but seems to be working (I can no longer feel my lump). I work from home and am still working part time - 3 days a week. I have chemo on Fridays and generally find I’m ‘OK’ to varying degrees except on Tuesdays. The side effects aren’t pleasant but they are manageable for me. I’m mainly living on Haribo because everything tastes weird but the kids do make me eat a lot of spinach because I’m magnesium deficient.
One benefit of intensive treatment is that you basically don’t have time to worry about the actual cancer, it’s all about making it through the next week of chemo.

@LemonDrizzle10 thanks I will try Macmillan - all help is useful at the moment.

@bringonyourwreckingball it's really good to hear from someone in a similar position - I'm guessing my treatment will be similar to yours. If I can vaguely function for a few days a week as you do then that is better than I was expecting tbh! Sounds like you are coping with it OK.

It must be very comforting for you to feel your lump disappear! Although from reading this thread I understand that doesn't always happen, but isn't a bad sign. I'm still at the stage of being too scared to even touch or look at the offending breast - let alone feel the lump again!

struggling through my first few days after first chemo; EC. Its grim, isnt it. I found I can drink oral rehydration sachets, but my son cant find any more in the shops, so going easy on them. I had to turn the tv off becasue I cant stand the food advertising.

@rollercoastersarenotfun welcome to the thread. It's great that you've got the support of a friend who has got through this and is out the other side.

I get what you mean about the info being in Klingon - it's just impossible to take in and really you just want someone to say that it will be ok, but of course no-one does that! Good idea about taking a notebook ...

Shame about your lacto intolerance. I have lactofree and have found the soft cream cheese quite normal tasting? Not many options for hard cheese unfortunately.

@TopOfTheCliff glad to hear your results were positive (in the round). Hope Mr Bow Tie provides soothing and helpful advice on future action against the intruder

@dotty2 I am envious of your post op ice cream sundae. Megaboob still resembles a hot air balloon spray painted by an angry toddler

@WorryMcGee goodness you’ve had a rough time. Really hope that DH is on the mend and little DD stays well

@HerbalRefreshment best of luck with your PT! Before I arrived in Cancerland I had a fearsome PT I affectionately named “Torturer Chloe”, because that is exactly what she did

@Nimbostratus100 sorry to hear you’re feeling grim. Maybe you could order a delivery of the sachets from Boots?

I’m disappointed in my wait for post surgery results. Appt is on 23rd Feb (surgery was on the 1st). I was told it would be 14 days so 22 days seems an eternity!

@EdwardTheBlueEngine Macmillan translated all the Klingon for me. I was on the phone for ages. They were so patient and understanding.

Welcome to the best thread on Mumsnet @EdwardTheBlueEngine. Sorry to see you here but you’ll get a handhold and support whenever you need it.
I know the fear is very real and can be overwhelming. This is completely normal and it really will get better when you have a treatment plan in place. Please stay away from Dr Google! You’ll come across all sorts of outdated rubbish that doesn’t even apply to you anyway.

I always call my breast care nurse if I have any worries or questions. Hopefully you have a number in your info pack.

There are posters on here who have experience of pretty much all the different treatments for BC so you can access so much information and support here too.

Hello @Nimbostratus100 I hope you are on top of the nausea with suitable antiemetics. You have my sympathy. I have to say I found the steroids made me eat like a hungry horse with EC and I put weight on with every round. I found the Robinson’s cordials very palatable after chemo. They have pear, raspberry/ rhubarb or lime and they are delicious. Also weirdly I enjoyed hot water with Marmite. But you have to go with whatever you fancy, it’s very individual.

Dr Bow Tie was lovely today and made me feel much better. He was just there to consent me for radiotherapy but took the time to reassure me and address some of my concerns. I will have at least two months waiting for radiotherapy so I can discuss Cape at leisure with my usual very well informed young Onc. My BCN is on the case too, she could see how upset I was and has asked me back for a chat and coffee. “I’m okay” I said. “No you’re not!” she said “but that’s alright and we will talk about it”. She wants me to join a group but I think I might frighten them if I express how angry I am at the unfairness of it all.
Where’s the rage room when you need it?

I have put on weight during chemo too. I've been craving sugary carbs and hungry a lot of the time. I'm trying to not let it get too out of hand as I know being overweight is a risk factor for recurrence, and my BMI was just above the 'healthy' range before I started. But equally I can't get through chemo on salad and steamed fish. There will be time for lots of lovely salads when I've finished in the spring.

I wouldn't fancy a group either, @TopOfTheCliff . I'd be too worried that what I said was wrong or unhelpful. Rage away at us - the good thing about this thread is that there's always someone feeling like you're feeling, be it positive or ragey.

Welcome to those of you who've just joined. Someone asked about working. I'm freelance and have been keeping things ticking over with a few hours work most days, but have reduced what I take on and am trying to make sure I don't absolutely commit to doing anything on any given day that I couldn't get out of if I suddenly felt worse. I could have afforded to stop work for a while but I'd have been worried about getting started again. Plus, I like my work and my clients and find it better distraction than books or tv. But obviously, it very much depends on what you do and your financial situation. My DDs are in secondary school and one of their teachers has just started chemo and is planning to keep working through it if she can. I can't decide if that's brave or lunatic, but then I could never teach anyway, so who am I to judge...

@dotty2 I agree while enduring chemotherapy it is not the right time to try to lose weight. I was full of good intentions for the spring which felt knocked back but having a couple of months off treatment will be a good chance to try and shape up a bit. It’s just a matter of making good choices every day. A healthy BMI probably gives a better reduction in recurrence than the chemo too ironically!

@TopOfTheCliff they keep trying to get me to join a group too. I just can’t. I’m far, far too angry and going to “Mummy’s Star” for other poor sods like me with babies or something similar isn’t going to make me any less angry and is likely to make someone else feel worse. I couldn’t even get through a Look Good Feel Better workshop they basically frogmarched me to, I left in angry tears after 10 minutes because I didn’t want to look in the mirror and also (and I’m beyond ashamed of myself for this) I was getting annoyed with the woman next to me who kept joking about her paclitaxel side effects when I was about to move to that from EC and was scared about it (think “haha, I’ll enjoy putting this mascara on my one eyelash” and “haha I’m gonna get this all over my face because I can’t feel my fingers” etc) I had no right to get so mad at how she chooses to deal with her situation but I was getting so full of rage every time she laughed I had to walk out before I burst. I think cancer has turned me into a bit of an antisocial wanker.