Cancer Support Thread 97: support for those diagnosed and going through treatment

[LiliJilliBobs]

Cancer support thread 97: support for those newly diagnosed and /or undergoing treatment…..
Thread 96 is pretty full - here’s a new one

How annoying that your long messages keep getting deleted @ForestFlowerFairy.
It's a beautiful day in my garden and I've been for a lovely long walk in the park.
A week on from surgery that feels pretty good.

@Ventress I am pleased that you have had some good news. Well done with getting the move completed and I hope you can rest now.

@cannaecookrisotto you sound like wonderwoman , how you get everything done. But I'm glad your mum seems to be useful and available to you.

I had a small moment yesterday of sudden fear. I was watching an old Nigella episode and she mentioned her late sister. I was interested on what happened so did a search and she passed from breast cancer aged 31. It hit me suddenly:(
But I'll continue to do my appointments etc. Get into a Christmas spirit. Live every day and hug my kids extra tight.
I do like Nigella. What happened between her and Saatchi in the public eye must have been difficult to get through. Well done her for leaving him.
I'd better not make too many of her Christmas bakes though. They appear to contain about a million calories each.

@Ventress lovely to hear that you have had some more positive news, I havent been given any information about markers - do they measure them via blood tests?
also good you are able to go and eat a lovely meal out. My taste buds are only just returning, slightly....
Wish I had some private healthcare I would definitely find out what you can get out of that. Stopping chemo by Christmas sounds like a good goal and not far away!

I am having my chemo delayed by a week because of how poorly I have been.
They have also agreed to decrease the dose of docetaxal. They cant however do anything about the filgrastrim which were a nightmare every time, made me sick, and achy and just very ill. I was just told to take lots of paracetomol during the day and also the anti histamine which I had been doing anyway. She said they are bad injections - yes I know that.
I am supposed to go on to letrozole at some point, so let me know how that goes - you can be my pioneer.

@ForestFlowerFairy good to hear that you are able to eat some things and good to get some ideas to help mask salt flavours.
I love gardening and I am missing my garden as I have barely been able to move let alone go into the garden but houseplants I kill. Apart from cactus which dont need any attention.

@cannaecookrisotto how many weekly chemos are you having?
I was told today I might be switched to weekly if the next chemo is as bad as the first one. She said I wouldnt need the injections - if I did that? Not sure thats right. She was a physician associate so not an oncologist.

Dentist was ok, filling replaced but its an awkward one and took nearly an hour.
Its been a long day for me. Wish I could drink a vat of wine.

@cantbelieveIamherethat sounds incredibly shitty, I appreciate sometimes there are drugs and things we simply have to take to let the medicine do it's thing, but it doesn't make it any less crap for you
Hopefully someone will come along that will drink the vat of wine for you, and me - I'm starting to miss curling up with a nice glass of red.

As I find more 'safe' non salty foods I shall taste, fudge would be ok if I could fit it in my bloody mouth. I have to break up teenie tiny bits to fit it in - but the melon tastes sweeter and nicer
Oh camomile tea. I normally drink green tea, but that tastes yuck. Camomile however is hitting the spot.

@ForestFlowerFairy
I lose posts sometimes too and it annoys me because they’re generally like war and peace !!

It’s fab hearing your update on the medication working, your pain reducing and the improved functionality. Even better to hear you’re dipping your toes in the food cupboard again (the salty taste doesn’t sound fun but amen for cream cheese). My taste buds are shot to shit as well hence all the cake. The sweet taste is about the only thing that doesn’t taste awful at the moment so I’m basically living on a cake diet. And marmite on croissants (the sweet and strong marmite taste is quite magic in my mouth). I would have balked at this 12 weeks ago and thought I was a heathen but now… 🤤.

@Ventress
Your update re the positive appt is music to our ears! Brilliant news that your markers have almost halved and you can move onto anti-hormone treatment. How lovely to have Christmas without the shitness of chemo, you’ll actually be able to taste and enjoy Christmas dinner. How are you feeling in yourself? Do you feel well symptom/side effect wise?

Yep, AXA have been marvellous. I have a personal adviser and she’s brilliant. She just squirrels away in the back ground doing what she does and I don’t have to do anything. If I do need to submit something (like the date of my port insertion), I just logged into the AXA portal and did it on a chat thing. No phone calls and farting around.

I’m in favour of the brow adventure. Not because I think you need new eyebrows but because it does feel like a nice treat and it gave me a mental boost. Sounds nuts that over a set of eyebrows but I was more worried about the loss of them than my hair.

I think you should go ahead and take the sick week. Take some time for you, convalescence and relaxation. You’ve had an absolute fucker of a few months and frankly deserve some rest. Just to chill out, watch absolute shit on the tv or whatever you want to do.

Happy birthday to your DH, a birthday dinner sounds nice! Sorry you missed out on Radiohead but you don’t want all those germs either. There’s some sort of flu going round at the moment and if any of us immunocompromised gang get it then we’ll feel like shite for sure. No neutropenic sepsis for us for Christmas thanks! 😂.

I love venting here too, cancer can be so lonely and being able to talk here openly about it is so cathartic. I can be in a room full of people but still feel so alone. It sounds awful this but just listening to people natter on about their normal lives, small
problems etc makes me a bit jealous that’s not me anymore. I miss the days when my biggest headache was listening to DH whinge about his bloomin piles. Christ, I was one of those Tossers that thought I was “blessed” 🤮. I was just floating along, new lovely baby, no real worries then my tit turns into Judas Iscariot.

@FcukBreastCancer
Wonder Woman I am not, if I didn’t have these children keeping me physically mobile I would be under my bed right now and refusing to come out. They both stayed at my dad’s on Saturday night and by Sunday afternoon I was nearly crawling up the walls. I felt restless but fatigued, my brain was doing overtime and I really felt the hit to my mental health. They’re quite literally keeping me from melting I think. I don’t know what I’d do without my mum, she’s been here all day today keeping me company and helping with baby fatfat (who is on the cusp of crawling and then I really will be buggered 😂).

Those moments of sudden fear are the absolute pits aren’t they. I get them and go all sweaty to boot. Facebook gets me with them a lot, mainly because I joined quite a few TNBC groups earlier on and now whenever I open FB I’m just faced with a literal cancer algorithm and people posting with a similar diagnosis to me but who have had reoccurrence/mets. But, I have to remind myself that people only turn to these FB support groups because they need support, there’s thousands of women who have had BC now out of active treatment and living their lives.

There’s plenty of people too who are S4 and living with cancer now as a chronic condition, going to work and living their life. Treatments have come such a long way.

@cantbelieveIamhere
Sorry to hear you’ve had a delay but your body will thank you for it rather than march back into chemo whilst under the weather. The Filgrastim are fuckers aren’t they, the Loratadine has made a big difference to my pain so it’s worth carrying on with it but can they not give you something a bit stronger than paracetamol?! Maybe a bit of codeine/co-codamol? The aches the injections cause are no joke and we do still have to live some semblance of a life during treatment. We shouldn’t have to live with pain just because they’re reluctant to dish out the good stuff. What about your GP? Mines always happy to chuck a bit of Oramorph or diazepam at me. It could be guilt for fobbing me off for 5 months with a blocked duct but I’ll take it!!

I’m having 12 weeks of PC+Pembro then 12 weeks of EC + Pembro (but every 3 weeks). So I’ve got another 2 weekly sessions of PC then onto EC on the 10th December. MRI scheduled for the 8th to see how much the PC had worked. I’m absolutely shitting my kecks for this scan.

It doesn’t make sense (to me so take this with pinch of salt) that switching to weekly chemo would reduce the requirement for the Filgrastim. The purpose of the Fil is to stimulate white blood cell production to bring out neutrophils up in time for the next chemo. I would have thought pulling the chemo closer together would increase the need for the jabs as our bodies have less time to recover naturally. But I do often talk bollocks and this could be one of those times :).

@ForestFlowerFairy - do you like rice pudding? I’ve developed a small obsession with it. I might actually sneak downstairs now for a bowl. No wonder I’ve turned into a right heft!

In my other news, I had second appt with the psychologist yesterday. Can’t judge yet if I’m finding them productive. He went through my early memories and childhood which made me feel strange.

Also, I did my application for PIP! Once I’d called up to ask for the forms, it let me complete them online. So I took the lazy option and used my Gemini AI to formulate the answers to each question. I fed the AI my diagnosis, side effects, treatment and my sufferings then asked it to provide PIP worthy answers in accordance with the scoring criteria. Took a lot of the tedium out of formulating my responses. I don’t actually like AI but in this instance it saved me about 5 hours of scratching my head.

Sending gentle hugs to all and hope everyone is having a nice Wednesday. I’m off to find my late night rice pudding!

I like Nigella too @FcukBreastCancer I make her Christmas morning muffins every year (and not necessarily on Christmas morning either!). She and Delia are my "go to" cookery books. Please don't fret about mortality. It's easy to get sucked into that black hole Yes, make the tray bakes, you deserve them!
@cantbelieveIamhere my taxol is weekly and I've never had the filgrastim injections. Perhaps it's to do with the concentration of the weekly chemo being less than than the three weekly? I am glad they are pushing yours back a week though, you clearly need some time to get over the last round. Could you ring the oncology department, or speak to your Clinical nurse specialist and try and get your queries clarified? And, as @cannaecookrisotto says, definitely get some stronger pain relief.

The cancer marker remark was interesting - I'm 11 weeks in and it's not been mentioned before. I haven't noticed any different tests listed on my weekly blood donation (apart from this week to check my Vit D ahead of Zoledronic treatment start), so presumably they've checked this every week. I've looked back in my Chemo book (what DH calls my "Service History") and it's certainly not listed in the noted blood results so I'm not sure. Apparently my kidney and liver function tests are also "amazing". I'm taking these as wins

I miss curling up with a glass of red in front of the fire too @ForestFlowerFairy. Now that you have finished your radiotherapy are you allowed the odd small glass of vino? Your updates are so much more positive this week which is wonderful. May those culinary explorations continue to widen. You have reminded me that I have a "variety" pack of Twining's teas that I haven't yet opened. I love tea but I just can't drink my usual English Breakfast at the moment as it tastes awful. And I used to run on tea so this has broken my heart!

Have you heard again from your son?

Thank you @cannaecookrisotto. I feel fairly crap to be honest but not as bad as last week. I have a bit of a cold which is making my breathing more difficult and my lungs burn. My hands and feet are tingling more so I think the neuropathy is increasing, which is another reason why I'll be pleased to get off the pax before it does any more serious damage.

My taste buds are shot to hell too. Everything apart from chocolate and cake taste atrocious. Since the dentist prescribed the heavy duty Fluoride toothpaste the horrid taste in my mouth has changed from metallic based to just "eurgh" and I can't describe it at all except as foul. I'm thinking of just going straight to pudding at the pub tomorrow. Surely nobody will argue with the woman with no hair over her menu choices?! I would love to be able to taste Christmas dinner!

Oh goodness, your psychologist sounds full on. I'm sure it is stirring up some feelings that you would rather it didn't, but I guess this is the way of therapy. Well done on the PIP application - with or without AI it's an enormous undertaking.

Like you I have scans early December and, like you, I am dreading them, and wanting to have them at the same time. I want to see my lungs! Hearing that cancer markers are down is good but I do still worry that stopping the chemo will stop the improvement with the lymphangitis. In my head I see the valiant Sir Chemo riding into my lungs and fighting against the insurgent evil Sir Lymphangitis (obviously in comic medieval form!)
Your MRI will show you what you know - that the tumour is shrinking.

I did think the other day when you posted that baby FatFat is probably getting reading to crawl. Batten down the hatches! Your parents are both great support and your girls are lucky to have you, DH and your parents supporting them.

Ring AXA - it's on my list! Ending chemo and moving to the next stage in my treatment seems like the logical time to do it.

Take care of yourselves everyone.

@Ventress I live on cups of tea too so its bad that for three weeks I havent been able to taste it but today I can!!

You are right everything tastes foul. So yes skip to pudding and enjoy.

I was told if I cant tolerate this docetaxal I might get switched to weekly pacitaxel? and then it would be lower dose and therefore no injections which at the moment sounds fantastic. They did me in and every time I had one it got worse.
So how is the letrozole? might have mispelt that.

Good luck with upcoming scans and good news about reducing markers.,

@FcukBreastCancer yes to grim thoughts we are I am sure all having them at times, its harder some days than others. Thats why I havent asked any difficult questions of the oncologist. Just get one day done at a time.
I too go off on google jaunts that I really shouldnt and depress myself.
So you are not alone.

@cannaecookrisotto
not sure how talking about childhood helps with now but hopefully he/she has a plan. Time will tell whether its helping you i guess.

I am not sure I trust any of them on the anti sickness or we can medicate to prevent that bullshit - as every thing I have been given leads to trots or sickness, even the side effects of the anti sickness meds seem to be sickness, immodium side effect sickness etc. and those evil filgrastim injections are the devils work.
I have been told to be positive as now they know how shit its been (they really dont ) and docetaxal will be reduced and phesgo is reduced as standard then things should be better.....

I agree with you it is helpful to come here and blab out whatever comes into your head rather than sit and think about things. I am really trying not to think and am reading a lot to divert my attention although the last three weeks havent been able to read at all so am making up for it.

Its a blessing to be able to drink my tea and taste it today, so even though wine is on my mind I think it would probably taste disgusting.

Good luck with your scans too, it will be good to see some progress being made.

@Ventress
Sorry you’re feeling crap but good that you’re feeling better than last week. Sending hugs!
colds feel so much worse now don’t they, what was just the kids having a runny nose felt like super flu for me. Fortunately it was short lived, I hope yours is too.

Ive managed to avoid neuropathy so far, I used the cold mitts/socks for the first 7 weeks or so then couldn’t carry on with them. The misery they caused me was immense. It sounds dramatic I know but they were just awful. I think i’m low tolerance to cold because I could see plenty of other patients sat happily with them freezing away and not looking too fussed. Fingers crossed if I can get next weeks PC out of the way I might have swerved neuro completely then onto EC which isn’t known for causing it.

I think you should go ahead and order pudding!! I do this all the time, I skip normal food for the cake!
It’s Yorkshire tea in this house but like you and @cantbelieveIamhereI find tea tastes rather foul at the moment so have been living on Dolce Gusto pods - the starbuck vanilla macchiato with extra sugar. I was weighed today and i’m now 70kg… I was 59 11 weeks ago… 😬.

I asked psychologist what the purpose of rehashing childhood was and he said it was so he good get an understanding of my family dynamics. It was a bit upsetting because growing up my mum liked a drink and sometimes it could make her quite… volatile. Not with me but I saw some serious arguments between her and dad. I spent about 60% of my childhood with my lovely grandparents as a result and they were my safe space. Mums my best friend now as an adult and doesn’t do that anymore since divorcing dad. So I felt like I was betraying mum talking about it, especially with all the love and support she’s wrapping me in at the moment.

what date(s) are your scans @Ventress? In might be miles away physically but I’ll be there with you in your pocket holding your hand. It’s one of those isn’t it where no matter what anybody says nothing will stop that ball of fear when we think about it. We’re that conditioned now to receive shit sandwiches, good news feels almost a Pipe dream. I also think it’s an in-built self defence mechanism. Brace for impact, so our brains try and convince us of worse case scenario. Again the pesky brain!!

Have you noticed an improvement in your breathing since starting treatment? (Before the wanker cold
came along)? If you have then logically there’s been improvement and I’ve got everything crossed (except my pubes because they’ve fucked off now) that your scans will come back showing it’s being kept at bay by the valiant Sir Chemo! I truly believe they will.

Yep, all she has to do now is coordinate her hand movements and she’s going to just crawl away 😱. God help me for this day. Thanks for saying my girls are lucky to have me, it does make me feel better, especially at the moment where i’m feeling a bit shit about subjecting them to my diagnosis.

@cantbelieveIamhere
Ask your team for Pegfilgrastim. They don’t like giving it out because it’s more expensive but if you’re suffering they need to give it to you. Please stamp your feet for it and be the squeaky wheel. You only need to use the Pegfilgrastim once a week and the side effects are reported to me less harsh. So one injection that acts over a longer period of time. And codeine. Ask for codeine.

I‘m sorry the side effects are giving you a hard time. Are you able to increase your water intake each day? And maybe pack in some electrolytes? The more you drink the more the toxicity is flushed through your body.

If they tell you to be positive you have every right to tell them to fuck off. There’s nothing worse than being told to “be positive”, “be brave” and all that shit. It really doesn’t help us.

Stop Googling! Googling is evil and statistics and data are out of date so it will scare you. If I Google
triple negative breast cancer my prognosis looks terrible. But there’s new treatments now (which I’m on and are working) and Google doesn’t take all of this into account. Same for you and your type.

Sending hugs to all! X

Round 4 of CAPOX and neutrophil are low. And dietary advice to get them up and working through this final round

I have weekly paclitaxel @cantbelieveIamhere and I don't have the Fil injections. But cannae also has weekly pax and she does have injections. My white cell count (according to my service history) is around the high 3's with Neutrophils around 2.5 each week. According to the MacMillan page that's okay. It's week 12 tomorrow. According to my oncologist the main side effects (apart from hair loss) with weekly pax are allergic reaction including anaphylaxis, neuropathy and gastro upsets. Pre-meds (antihistamine and steroids) are given at least 30 minutes before the pax infusion to try and offset any allergic reaction.

I am definitely noticing neuropathy now so I'm glad I have only a few more weeks (fingers crossed).

Nobody has ever mentioned the cold gloves and socks @cannaecookrisotto but I'm quite glad it wasn't an option as I probably wouldn't have been able to cope - I am a cold wimp! I'm impressed you managed 7 weeks with them - Superwoman

I'm only on day 3 of the Letrozole @cantbelieveIamhere - I think I need to have stopped the chemo and be taking the Ribociclib and Zoledronic acid before I can really tell you how it's feeling/working. I will update asap.

I absolutely agree with cannae about drinking lots of water and staying really hydrated. I'm glad you are starting to be able to taste again.

Thank you @cannaecookrisotto my scans were to be on 8th (like yours) but I noticed they were for a little cottage hospital the other side of the county, so I changed them and now they are on 10th at the main hospital where I usually go. I see my oncologist on 15th to review the findings. I will be thinking of you and sending virtual support and hugs (as always).

Please don't doubt what a great mum you are. Your girls are so lucky to have you. When you talk about this time in your life with them when they are grown up I'm sure they will tell you the same - that they were supported and loved. I am in awe that you are managing your treatment, the side effects, the fucked up thoughts, work and parenting your girls. Once your youngest is crawling that additional weight will fall off from chasing her around!

I think you are very brave allowing the psychologist into your thoughts and emotions. I'm sure it is beneficial but I would be way too chicken shit. I hope you stick with it. I guess one of the things about being an adult is realising that one's parent's are people too, and they they had bad times which resulted in them not treating the kids as well as they could have sometimes. That you have forgiven your mum for this, and moved on to a really great relationship now, is so mature.

My breathing has certainly improved since chemo started. I don't need oxygen from a canister, I can climb the stairs in one go (no waiting to try and regain my breath every couple of stairs). I can lie down to sleep (lovely!) rather than propped up on a wedge. I still check my blood oxygen, heart rate and blood pressure regularly but instead of being O2 at around 93% at rest and heart rate over 120 it's more like O2 of 98% and heart rate in the 80's. It could still be better but it's light years better than it was when I was first admitted to hospital.

How are you feeling now? How are the side effects? Hopefully the change to EC will be kind. As I mentioned, my sister found the EC easier on her than the taxol and I hope that is the case for you too (everything crossed!)

I broke into my Twinings selection box last night and tried the one called "Sleep". It was spiced apple, vanilla, chamomile and passionflower. It was okay, not much flavour (but then taste buds are shagged anyway) but I did sleep until 5am rather than my usual 3.30am. I also slept from about 6am and had to be woken by the alarm at 7.30am. So perhaps it worked. I'll try it again tonight.

Good luck for round 4 of Capox @littlebilliie

Good luck with your PIP claim @cannaecookrisotto I'm very familiar with claiming, as I've been filling in those forms for over 30 years (well DLA first, then over to PIP) for a family member. I did think about applying myself, but I can't see that I would get any points, despite the collateral damage from chemo and radiotherapy. And I'm hoping that will gradually get better!!

@ventress thanks for the info about pacitaxel, i think thats the one she said i would change to if i cant cope on docetaxal.
all the side effects are pretty much the same, its all grim.
she did also say if i cant cope with six sessions i might be stopped at 4. I am not sure I want weekly anything at the moment. not even wine because i probably wont be able to taste it.

a tea selection sounds good but if you cant taste any ot them its a bit pointless isnt it.

so you and @cannaecookrisotto will be getting scans at similar times, hope you both get good results as that would be fantastic.

Hi all it’s about time I joined this thread. I was recalled after a routine mammogram in July and diagnosed with IDC grade 2 Er+ HER2- in September. Had WLE and SLNB on 16th September tumour was 24mm (larger than expected) also had some DCIS, and the single node was clear. Finished 5 days of radiotherapy on Tuesday this week. I didn’t have the tattoos but some marker stickers instead. Boob was slightly pink yesterday evening but is ok today. Had a few shooting pains too.
I haven’t ventured down to the pharmacy to collect my Letrozole yet and I can’t say that I’m very happy about having to take it knowing the numerous potential side effects. I had been on HRT for 2.5 year at diagnosis and am missing it.

@LeftBoobGoneRogue
Welcome to the gang although I’m really sorry you’re here, sending gentle hugs.

It sounds like you’ve had a busy couple of months with treatments, it’s just shite isn’t it. Must feel fab to have finished rads! How did you find it overall? Will you be having any chemo or is that it now?

Fingers crossed that the Letrozole doesn’t make you feel too crappy and it’s plain sailing for you.

@ForestFlowerFairy
I hope you’re ok and slowly venturing back into the food cupboard more and more each day. Did you sort things with your son and has he mentioned anything more about Christmas Day? I bet he was shocked that you stood your ground. Good for you Forest 💪🏻

@littlebilliie
ah the neutrophils can be buggers can’t they?
after this final round what’s next on your treatment plan? How are you feeling? Hope side effects aren’t giving you too much grief, sending warm and huggy vibes.

@Ventress
If you don’t like the cold the gloves/socks would have been your enemy. The only reason I got through 7 weeks of them is because my mother would check under the blanket to make sure I wasn’t cheating (I’d just slip my hands and feet out and act natural 😂) and she’d tell me off to put them back in. In the end I just put my cold foot down and said no more!! Sorry madre, you wear the bastard things!!

You’ll be having your scans when I’m having my first EC. I’ll be in hospital thinking of you in hospital. I did think how nice it would be to have my own CT scanner at home (remember back in the old days when people had those sunbeds), but then I thought that it’s not a good idea because I’d be inside it every day obsessively. I’d look like Chernobyl woman plus I don’t know how to interpret a CT report. Plus I’m sure they cost about £6gazillion pounds.

I’m sure the 15th will come round soon enough with positive results for you judging by the improvements with your breathing. It sounds as the lymphangitis is getting bullied by the chemo. When you think back to August and you being in A&E to now, don’t need oxygen, climbing the stairs etc! I know it’s stressful waiting for results, Jesus himself could materialise and tell us everything will be ok but we wouldn’t believe him would we? But it defo sounds like you’ve had some proper symptom relief and my rational side is saying surely that means the chemo is working… ❤️.

Your words about talking to my kids when they’re grown up about this part of my life made me tear up a bit but in a very nice way - thank you xx.

I’m doing my best but some days it’s a miracle we’re all in one piece 🫣. I hosted a training session today (I was the trainer, fortunately a small group of 5) and I was so nervous in the run up to it. Started at 09:30 and ended at 16:30 with some tea breaks plus lunch. I loved it! After 10 minutes I felt a lot like my old self again, my confidence was there, I forgot about bloody cancer for the day and I was me again. It did me a lot of good, and it went down a storm. So I’m glad I went through with it. I’m super tired now but it was worth it.

I most likely will carry on with the psychologist, I’m going to need him I think at the back end of active treatment. The routine and predictability of treatment is keeping me on the tight rope, I think when it all stops my head will fall off.

I’m feeing ok but chemo brain is truly making itself known. I tried to put a T-shirt on today, couldn’t work out why the logo wasn’t showing at the front, turned it around about 15 times before realising it was DHs shirt… mine was on the bed next to it!!
I hope the EC is ok too but I’m thankful it’s every 3 weeks, so if it does kick my arse then at least I might get some good weeks before the next round.

The Twinings sleep tea sounds nice!! I don’t normally like different teas but that’s really appealed to me. And anything to help me nod off is a bonus. I’ll try it and report back!

@BatshitCrazyWoman
I hope the collateral gets better from the chemo and radiation too, it might still be worth applying, they can only say no :)

@cantbelieveIamhere
maybe if you have an extra large wine, it would help to taste it? 😉

@FcukBreastCancer
Hope you’re ok too and feeling more cheerful (well, about as cheerful as we can manage with these traitor tits.

@cannaecookrisotto fantastic news on the training day, it must feel so good to get a bit of 'you' back. I'm off to the hairdresser's today as I haven't been since before all this started and I can't wait to look like me again, usually I have extensions and weekly blow drys, sadly no extensions due to the metal beads but it will be good not to have 6inch roots!!!

In terms of my son, he's done his usual, totally ignored me but started messaging on the family chat like nothing has happened. Confirmed he's back mid December.
He lasted a week last year, came down just before Christmas and left day after boxing day so lets see how this goes! I can sortof understand, he's a 21 year old who can't drive and we live in a rural village so he has to rely on us or his sister for lifts everywhere. I'm thinking of decorating my office so I might get him involved so it's something to do....even if it's in no way fun!

Starting to eat tiny amounts but usually only once a day, last night was quarter of an omelette and some melon. There's just no joy in food yet 😭
And wine is strictly out thanks to the nerve damage medicine so if @cantbelieveIamhere can have a glass, please report back on every teenie tiny taste, I shall live through your experience!!
All the talk of tea is tempting me to crack open my tea advent calendar but I'll rummage in the cupboard as we've quite a few herbal teas and experiment and report back!

@LeftBoobGoneRogue welcome and sorry to see you here. I've head and neck cancer so my treatment is different but the emotions and the truly crappy ness is certainly something that I and everyone on this thread can emphasis with. There's a lovely bunch on here though so feel free to share as much or as little as you need to get through this.

I'm ok thanks @cannaecookrisotto but I am freaking out about my dd's health. She has always been quite sickly and sensitive and now has to have some blood tests. She has a rash I was worried about, and I can tell GP was too (petechiae, non blanching). She had a large bruise last week. She gets fatigue and dizzy. Prone to loads of infections, especially her skin.

At least blood test is next week as gp was worried we would wait months.
Under instructions to take her to hospital if she becomes unwell.

I was feeling stressed after appointment and drank wine which I could have done without this morning.

But meeting a friend and it's not raining, so something to look forward to today.

@cannaecookrisottoand@ForestFlowerFairythanks for the welcome to the club no one wants to be part of.
when I had radiotherapy I didn’t have tattoos because it’s an option at my hospital. They makes me with a marker pen and stuck clear stickers over the top. I’m waiting for the pens marks to wear off. Nor did I do breath hold, even though it the left boob because they can now work around it. I had my RT at Mount Vernon where I think they have some of the latest equipment. I had my first session (left boob only)last Wednesday, then Thursday
and Friday. Felt fine over the weekend but after Monday’s I felt exhausted maybe because they were running over an hour late, and bit like I had travel sickness plus aching upper back too. We didn’t get home until 8.25pm and we’re less than 20 minutes from MV. After Tuesday I felt ok and went in almost on time. Plenty of stubby pains today but fatigue has yet to hit me.
I have no family history of BC but I do have an unknown grandfather so maybe his side. So I was surprised to be diagnosed but once I started digging I actually have a few risk factors. Late menopause at 57, dense boobs, not great at exercising, decades on hormonal contraception, HRT for 2.5 years, plus 2 children born when I was 31 and 36. I breast fed both DC for a year, don’t drink or smoke plus healthy eating generally. I attended very time I have been called for a mammogram fortunately.

Welcome to the club @LeftBoobGoneRogue sorry you are here. My parent's local hospital was Mount Vernon (they moved very recently).I know it well I'm glad the radiotherapy was okay. I'm on Letrozole but it's only the 4th day. I've not noticed any side effects but I'm also having weekly chemo and the side effects are very similar so until the chemo stops I guess I won't know the Letrozole side effects. I will take the L for two weeks and then, once the chemo stops, I'll start on Ribociclib and I also start on Zoledronic acid infusions next week. No radio or surgery planned at the moment.

When are your next scans?

I also have BC but secondary lymphangitis and they've now found cancer in my ribs, sternum and skull. I'm 50 and have one 18 year old son in year 13. I'm in Berkshire so my treatment is at the Royal Berks Hospital. I had the genetic test done (because my sister is recovering from primary breast cancer too) and it came back negative. Apparently only 5% of BC is genetic the remaining cases are environmental.

Ah the joys of dealing with government applications @BatshitCrazyWoman my mum gets higher rate Attendance Allowance for her arthritis. She has also has a blue badge as she is really quite immobile now. I've been told to apply for PIP and a Blue Badge but I haven't. I may apply for the blue badge if my mobility doesn't improve.

DS has got an ENT infection and a temperature so has probably been infecting the house for days. I really hope I don't catch whatever he has. I let DH and DS watch the first couple of new Stranger Things while I hid in my room last night. He also found out yesterday that he didn't get an Oxford interview. No big surprise as it was always a real long shot and he doesn't seem very upset, but I would like to have been able to give him a hug.

How is your daughter today @FcukBreastCancer ?

Back later, as my fingers are numb and typing isn't going so well xx

Welcome @LeftBoobGoneRogue . I have ILC and a similar treatment plan to you.
My radio is January as they needed to operate again. Very annoying but at least Christmas should be peaceful gap between treatments. I have kids age 9 and 12.
I'm gathering my family history at the moment to see if need full genetics.

@Ventress thanks for asking. Her dotty rash is much the same although the fungal element is clearing. Hopefully it was clear afterwards. She's accepted the blood test idea ok.

She's well and bright and wants a quiet day. (She finds school hard and had a little hiccup yesterday about some work. She has great pastoral care via SEN department thankfully so can go there when needed. )

@Ventressreally sorry to hear about Oxford, my daughter's boyfriend wanted to go and didn't get in, but then continued with the 4 a levels, which honestly back fired a little as he needed 2 A stars and an A for the uni he wanted, he ended up with an A star, A,A, and a B. I'm convinced if he's dropped the fourth a level he'd have not stretched himself so much and gotten the grades he needed. We went through clearing and he still got into an excellent uni but my word the stress levels on the day, and he's not even my child!! However....if your son is doing the 4 a levels for Oxford I'd seriously consider the potential of dropping to just the 3.
What is it he wants to do?
Gosh, I hated the uni bit - the applying and waiting for acceptance letters then more stress for exams and results. I'm not sure what's worse, cancer or uni applications 🤣😂🤣
Seriously though best of luck.

Hi everyone, can I join? I am possibly ( realistically it’s more probably I fear ) looking at a third breast cancer or I suppose a recurrence . , have had MRI and biopsy, should get results in about two weeks .First BC at 35 , nearly 24 years ago all fine in that breast until a new lump showed up a couple of weeks ago on a mammo . In the meantime I had a different type of BC in other breast 8 years ago. That’s behaved itself ( so far touch wood) . Chemo both times with radiotherapy and tamoxifen. And now I fear it’s here I go again. Keeping it all hush hush as I so do not want to put my family through it again, DH knows and is supportive and calm, but I feel terrible for him too, it’s his third time aswell even though he’s not the patient. Hey ho on the positive side I’m nearly 60 and it’s not at the same as having it at 35 with young kids and BC has loads of treatment possible so I know I’m still fortunate. Just want to get it off my chest ( in more ways than one :)
Thanks for reading x

good evening ladies, sorry to see you joining us @Nonamelass, I really hope your results come back negative and we can happily wish you well but if not this is a lovely supportive thread.
I’m 35 and diagnosed with triple negative on the 1st September. Stage 3, tumour was 9cm at diagnosis because they kept telling me it was a blocked milk duct. I’ve done 11 weekly PCs + immunotherapy so far, 1 more week of PC, then 4 cycles of the old Red Devil EC. Then MX, radio, then another 7.5 months of immunotherapy. Possible some oral cape chemo if any residual cancer found after surgery.

Cancer is just a massive wanker, I’m really sorry you’ve been there twice and I’ll be keeping everything crossed for you.

@LeftBoobGoneRogue
I had genetic tests done which came back negative, and no family history. I lead a “healthy” life. I often wonder why but it just drives me crackers. I think it’s a shit lottery that we manage to win.
How have you felt today?

@Ventress, I’d love to know what they mean when they say “environmental”. You should defo apply
for the blue badge :), I think you should get the PIP too and spend it all on a nice cleaner for yourself.

Sorry to hear your DS has an ENT infection, how is he today? How are you?

@FcukBreastCancer
How is your daughter today? It’s so much worse when it’s our kids we’re worrying about isn’t it. How old is your DD? What day is blood test?

@ForestFlowerFairy
How is the new hair? Bet it feels amazing having your hair done and getting back some of your old self! It’s a brave thing to do as well when you think about it, like a step forwards into a new beginning ❤️.

Ahh so he’s home for Christmas 🎄. He was trying it on but you didn’t stand for it! The office decorating actually sounds nice, I’d love to do this with my mum (appreciate I’m not a 21 year old boy!). Glad to hear there’s progress in the food department and I’m sure you’ll find joy in food again, you’ll get there.

I’ve felt pretty rubbish yesterday and today. Think I burnt myself out on Thursday (was worth it) but I’m so tired. I feel like I could sleep for weeks. Feeling tired has put my mood down, I actually feel like I’m poorly at the moment which means I can’t pretend to myself that I’m fine. I’m sure I’ll pick up tomorrow and Monday. It’s just been a bit of a slog this weekend!

Whichever way you turn it it's all pretty grim @cantbelieveIamhere - I am with you on that. How are you doing this weekend?

I am thrilled that you had such a great day @cannaecookrisotto running your training session. I'm sure you are feeling the effects this weekend, but it's so good to feel "normal" and do the things we used to do so comfortably isn't it? Don't pretend that you feel okay. Have DH wait on you and sleep when you need too. I do hope you are able to relax today and feel better soon.

I will be thinking of you when you have your first EC and keeping everything crossed (as usual)

I am waiting to see how your PIP application goes first You are self employed and so your wage is more changeable depending on how much you can work. I have a regular and decent wage so I feel less need to apply at the moment. I have seen a financial adviser recently though. He has suggested that I "cash in" my small DB pension scheme. I had this years ago when I worked in local government and I've just left it alone but now that I may not see 60/65 it's probably worth more to me in my DC scheme. I am going to get a valuation from the council. I have also decided to stop paying my AVC's into my pension from January. I'm going to save this separately for DS' university contribution (and hopefully, a cleaner!).

DS is a huge snotty mess at the moment but the infection seems to have died down and he's not running a fever anymore thankfully. I had a wonderful day yesterday. Before this shit-fest started I was part of a youth theatre group management committee. The Youth group is part of a bigger community theatre group, so everyone is a volunteer. DS had been going to this drama group since primary school and I got involved in helping out. Anyway long story short, DS left a few years ago but I've carried on. I do stage management and admin and help with costumes and props. I haven't been able to do much this term but I went to the end of term "showcase" for the younger groups yesterday and it felt fantastic just to be back and involved, to catch up with people and feel "normal". I have missed it so much.

Thank you for your kind words about DS @ForestFlowerFairy . He wants to study History, or History & Politics. He has offers from Exeter and Warwick so far and is waiting on Durham and UCL. He's just doing the three A levels - History, English Lit & Economics and has good predictions so fingers crossed. He would really like to go to UCL I think (if he gets an offer) but the London living cost is putting him off. Another reason why I'm going to try and help save for him. I agree, it is so stressful applying to university. I swear it wasn't like this in my day. His school were very clear not to do 4 A Levels unless they were really needed. The majority of his friends doing 4 are those who need Further Maths for, as you say, Oxbridge, LSE, ICL etc. Clearing sounds so stressful! DS' plan B is a year out to earn some money and then reapply but we shall see. If he changes his mind and goes through clearing so be it.

I'm so glad your son has re-joined the group chat and is coming home for Christmas.

Did you break into your advent calendar? I have been having the "Defence" blend from my selection pack the last few days (to ward off DS' lurgy). I'm not sure I really like fruit teas. They are not unpleasant, but don't seem to taste of very much. They smell lovely though.

Having your hair done and the food experimentation all sound so positive. I'm so pleased for you!

How is your daughter today (and how are you) @FcukBreastCancer ? Is the blood test this week? The nurse can always numb the area before the needle if she is concerned.

Welcome @Nonamelass - I'm sorry you are here but very pleased to meet you. They say third time lucky so perhaps this time your tests will be negative. Your DH sounds lovely. Do you have children? I hope the tests are negative and it's a cyst or something. I will keep everything crossed for you. Please feel free to talk and offload here - this is a lovely group.

Take care everyone, enjoy a peaceful and pain free Sunday xx

Aw I feel for you at 35 , is so flipping young to be dealing with it ,the one I had at your age was supposedly a fibroadenoma until after a few months they took it out and the proverbial hit the fan. ( lobular invasive) , I’ve had three genetic tests over the years , nothing came up but I / they think that i possibly do have a gene .it’s just not one that’s been discovered yet.
I’ve met the red devil too ,had that the first time with something else, it was called FEC at the time. I think I just had the three weekly EC bit the second time ( can’t actually remember but it was knackering not helped by me being a total grump about having to do it again) and 18 weekly taxols (( well 17 in the end cos of bloods and feet starting feeling funny with neuropathy) In between those two years of treatment I’ve lived a totally normal and happy life so I’m greatful to science. Not had immunotherapy but I know it’s a wonder drug. The thing about BC is that they’ve thrown so much into research and the treatments are wowzers. Thanks for your good wishes, I am hoping for the best but sort of resigned to it being something ( hopefully not much ) it’s classed birads 4c so best to prepare myself I think. Have a lovely Sunday everyone and thanks risotto for your warm welcome xx

Ps yes I do have grown up sons and a granddaughter with another granddaughter on the way 💕 . I’m keeping it all very quiet for now because I can’t stand putting them through anymore worry ( we all live very locally and our GD spends alot of time with us after school and whatnot ) it’s a bit lonely though cos I don’t want to start telling other people before the kids , so avoiding seeing anyone .me DH and a couple of childhood friends ( who don’t live locally) are keeping it schtum. Yes DH is great but I have to be careful cos he’s not one to show how he’s feeling.