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

@ForestFlowerFairy
My main symptom of menopause or peri (not sure which it is) is hot flushes. I find them worse at night, I wake up wet through then kick covers off, then I freeze. Cycle continues! I’ve not had any periods since treatment started either. Just stopped! Like you say, the things you’ve listed could also be side-effects of treatment too, it’s hard to know the difference.

@FcukBreastCancer
I’m really sorry that your results have been delayed by a week!! Must be so frustrating!

@Inthebasement
So sorry to hear your results have been confirmed but I’m glad that it’s manageable and treatable. Have they told you your treatment plan?

Be kind to yourself, don’t forget your GP is there to support too if you need it for anxiety etc. I got some low strength diazepam in those first few weeks but once I started treatment I didn’t need them anymore (but do feel better just knowing they’re in the cupboard).

We will be here for you when you’re ready

@Nonamelass
I’m sorry your biopsy results has been pushed back too! I think you’re right, this thread should be called the waiting room!!

@Ohjoyohbliss
For the dry skin, have you seen the MooGoo products? I’ve seen people swear by them for chemo/radio related dry skin. Im going to order some, in the meantime I’ve been lathering myself with Nivea Soft which is actually doing an ok job.

@Ventress
How are the fingers and toes?
Baby fatfat will be baby svelte (that made me laugh!) in no time with the speed at which she is hurtling round this living room. She’s obsessed with the mop bucket in the kitchen. Just wants to get her little gummy chops on it all day. So kitchen door is now always closed. I did order baby gates but they’re too wide. Apparently I have abnormally narrow door frames. Will teach me for not measuring and just assuming they’d fit!

I’m glad you’re going to take some time off. You definitely deserve it to just relax, do as you fancy even if that means planting yourself on the sofa and not moving for 8 hours!

@Sbmpp
As Ventress says, none of it is your fault . I get it though, I beat myself up all the time for not pushing for a referral. We have to be kind to ourselves! Cancer is just a massive bastard and I’ve said this before but I wish I could kick it right in the fanny.

@TopOfTheCliff
Thank you ❤️
I couldn’t have done it alone without this lovely bunch, I’d have lost my mind without them.
Congratulations on your Granny status! They’re gorgeous creatures these babies, mine is keeping me on my toes at the moment. Had to enlist my own mum to the cause this weekend otherwise we’d all be looking like stig of the dump and eating dust .

@BatshitCrazyWoman
it is grim indeed, although probs not as grim as mustard gas @Nonamelass!

It’s definitely an altogether different beast than the PC. Never known a fatigue like it!

All this talk of beef and venison is making me hungry. I’ve not had cake in a week, I’m having to eat small portions of very beige food now. Especially after today’s incident. Considering how weak I feel I moved like Usain Bolt!!!!

Waving to everybody else and I’m sorry if I’ve missed anyone. I’m firing on about 1/3 of my usual cylinders at the moment but hopefully I’ll start picking up more as the days go on.

@Nonamelass I love foie gras :). Unfortunately there is a ban on it in California. I don’t know who passed that bill but not surprised 🙄

@cannaecookrisottoIm sorry to hear that EC has been an evil bastard to you. The stomach issues sound grim. Nothing as embarrassing as not making it to the loo in time. Happened to me once on holiday when I had food poisoning. I got up at 4am passed out and soiled myself. Poor DH had to sort me out.
I’ve now been taking letrozole for 12 days and have noticed I’m overheating at night more and some nights I’m waking boiling. I’m not sweating just hot. I am having upper back/neck pain quite a bit and maybe my left elbow might be thinking of joining in. Also had an odd issue with word recall which is concerning . Definitely feels worse than menopause before I started HRT. Boob scar is still feeling irritated post radio.
I had the results of my DEXA scan on the NHS app. I was on HRT for nearly 3 years and I take bit D and magnesium, so it’s good for my age and not too bad vs a 30 year old woman. Got my next onco appointment early February.
For Xmas Day we have 2 turkeys + ham (this is probably outing). Roast turkey (but not all the trimmings) at lunchtime and a casserole turkey in the evening (and for several days after).
I hope everyone has a better week.

@LeftBoobGoneRogue I think your Christmas feast sounds lovely. I haven’t a clue as to our menu but I’m inviting my brother and my dh will be inviting his (😵‍💫😳) so we better come up with something quick!
I just had a dexascan a month ago and I do have osteoporosis. Unfortunately have to wait a month to see the bone health team. Like you I have a right elbow acting up. I gave it a good bang on something last month and due to the blood thinners (also due to the cancer, the gift that keeps on giving) the arm looked like I was beaten. Like you, I also had food poisoning and remember sitting on the toilet due to the diarrhea and vomiting into sink (sorry tmi) of the nice hotel room we were at.

I’m actually going to end this because it’s just too long. I just wanted to say I can feel your pain because for some reason I have been through all the things mentioned in your post (including the hrt). I really, really feel your pain and am so sorry you are going through all this and so young too. All the love in my heart goes out to you and I hope that not only next week but the soon to be next year will be good to you.

Thanks @LeftBoobGoneRogue , it’s just undignified on the whole (hole?) this crap isn’t it. My DH asked if I’d like a commode for Christmas the funny fucker!

…

my throat is super inflamed. I initially thought it might have been a virus but it’s going on a long time, so I think it’s general chemo soreness. I’ve been using the spicy Difflam mouthwash but it’s not helping much, does anybody have any tips to help the general throat discomfort? I’ll ask the Onco tomorrow but thought one of you wise bunch might have a sneaky tip up your sleeve :)

@cannaecookrisottomouth stuff I feel a little like an expert in!
I hated the salt and bicarbonate in water (1tsp) of each in a litre of water, but it seriously helped throughout the day.
Gelclair was also a godsend. A little like bonjela for the whole mouth , I still use it for evening meals and gargle it an hour to half hour before eating. Since learning to eat again I'd say the difference between using it and not is easily me doubling what I eat.
I try to be careful what I eat still, a sausage scrapped the top of my mouth last week and it still burns now. 😔
Also, been there with not trusting a fart, it's been a combination of diarrhea followed by constipation, if it helps you feel better once it was so bad I had to sit in a warm bath and go there. Now if I go.more than 2 days without going I take a laxido which is gentle and really helps.

My son and daughter are back now from uni, got home yesterday and they've all united in mocking and laughing at me - from forgetting words, buying the wrong gift and the new ridiculous thing is freezing in a room because I've totally forgotten what it where I am supposed to be going. Apparently it's all highly amusing to them.
Managed to get our tree yesterday and decorate it without a war breaking out followed by a takeaway
Let's see how it all goes this week. I'll need a quiet day today as Saturday we did the BBQ course - absolutely brilliant, everything was cooked on a type of BBQ, with SO MANY eggs and smokers. Salmon starter followed by beef, turkey, honey parsnips and carrots, sprouts with bacon, onion and cashew nuts, stuffing, pigs in blankets and gravy followed by apples in a syrup and custard. Nothing was too crunchy, and I even ate the salmon, something I wouldn't usually eat.... unfortunately we have one small egg and a BBQ so not quite sure how we'll replicate in time for Christmas but I suspect if nothing else the turkey and sprouts will be done outside
So...What's more important paying for kids uni accomodation or a new BBQ egg?!!

I do hope all of you have a calm week in the run up to Christmas

Hi @Sbmpp How are feeling today?
Foie gras is a huge debate ;) Hope you have an easy day today x

Seconding Gelclair for mouth issues @cannaecookrisotto I found it better than Difflam. You can also take painkillers (I used to if I had to do a bit of talking, because my mouth really hurt).

@TopOfTheCliff Hi , I’ve read your post and noticed we are both in the two primary BC category 😊 Mine were 15 years aprt ( poor you having them so close together) Same flavour ie both highly hormone positive , different brands one lobular one ductal, different breasts .So chemo etc both times 6 FEC first time and then 2nd time I think it was 6 three weekly EC ( it was a buggar whatever it was) there’s one you can’t have twice which I think is the F and 18 weekly taxols at the same time ( one of these days I will log on and read all my notes and be more precise ..I’ve often just preferred to do finger in my ears 😉 and just go along with what the drs have told me to do)
Mentally it was harder the first time cos I was so petrified.( had young kids) Second time I was a huge peed off grump about having to do it again and it was harder on the body I found, had to have the injections for blood cells a blood transfusion and a couple of nights in hospital with a temperature 😫

Anyway all absolutely fine in between , life went completely back to normal which I am so grateful for.
Then check up mammo in November led to MRI led to finding a new mass in the first breast. Waiting for biopsy results on Wednesday 🤨 So I’m back in the waiting room …. Trying my best to keep everything very normal and not go down the rabbit hole. It’s had rhe advantage of meeting this lovely lot on this thread which is helping as I am trying to keep it more or less under wraps IRL . Don’t want to worry family for nothing.
Enjoy the bike riding it sounds brilliant!!
Have as best a day as possible everyone!

I'm on the early part of the journey no one wants to go on. I had my CT scan on Thursday and today is the MDT meeting. Feels odd that a group of strangers will be discussing my body, knowing things about it that I currently don't. I'm guessing I'll get an appointment through soon to meet the consultant to discuss staging and treatment plans.

Am very scared and will use the words 'frightened', 'scared' and 'terrified' more judiciously in the future. I never knew the true meaning of them until now.

@watchadewin oh its just torturous and horrible waiting for results isnt it? I’m waiting on biopsy at the moment .
if it’s any consolation I have always had results (when it’s possible )immediately here in France . just a quick 5 minutes with the radiologist after the MRI or whatever, where they are lovely and gently explain as far as they can., and it’s equally terrifying ( or immediately reassuring depending on your luck) as you have the information but not the solution . When you see the consultant it gets better as they start explaining the plan and you feel alot calmer . Sending you best wishes.

You poor thing @cannaecookrisotto - what an awful time you've had. Please tell the team today as they can (and did for my sis) turn it down if the mix is too harsh I hope you are feeling a bit more human today. Yes, all of those stupid "cures" can can take a long walk off a short pier.

Interesting about Gelclair - thanks both. I have some in the bathroom cabinet but hadn't thought of using it for this.

I have a swollen throat and swollen lymph nodes in my neck/under my tongue. I've had them since this lousy journey started. I mention them every time I see the Oncologist/chemo nurse but nobody seems to think it's a problem or worth dealing with. I also have permanent ear ache. Wearing my chemo hats helps the earache as it keeps them warm and covered. I'm also getting nosebleeds Not heavy blood flow; more that my nose is always running and when I wipe/blow it the tissue is pink. I know you had a torrential nosebleed @cannaecookrisotto but have you, or anyone else, had this low level bleeding?

I'm glad your children are back for the Christmas break @ForestFlowerFairy. The BBQ day sounds amazing - I hope you get the chance to recreate some of the recipes at Christmas. Uni accom or a new BBQ egg? That's a tough one!

I'm staying out of the foie gras debate @Nonamelass I don't think I've ever had it. Fillet of beef sounds perfect for Christmas, especially with your Anglicised children providing Yorkshire puddings and having found horseradish!

Do you know when your meeting will be @watchadewin ? If MDT are meeting today it's probably next week? I hope you get to see the specialist before the Xmas break. Are you managing to get some sleep? All the best to you and @Nonamelass and all of those waiting on tests and appointments.

I'm off to my Oncology appointment in a moment. Hopefully I'll get the results of the CT scans and tests from last week. I must remember to mention the itching! Something is giving me a rash on my arms and face that is driving me low level crazy.

Sorry you're here @watchadewin- you really are at the worst point. The medical side of many treatments isn't nice, but the physcological element of waiting and not knowing for me was the worst aspect.
Everything does seem to move quicker once the MDT have met

@Ventressi had constant low level nose bleeding throughout radiotherapy. Nothing gushing like you say but every time I'd wipe my nose, which was far more frequent than when I'm well
It has stopped now and if I remember it correctly was pretty quick after my treatment stopped

@Ventress good luck for your results 💕 Hope they sort the rash and ear ache ( poor you ear ache is horrible) and explain the nose bleeds 💕 and you have been working through that? I don’t like the battle language but that is serious warrior stuff .

foie gras is actually delicious which I know is weird and hypocritical coming from a nearly vegetarian 😳We do make sure it comes from the Dordogne or south west where they live free range in the countryside. But yeah 🥴

@Nonamelass Thanks for kind note. Feeling ok. Having chemo in about an hr.
Now for a week of nausea, nosebleeds and exhaustion.
(I haven’t had foie gras in about 40 yrs but remember it was so good until I heard how it was obtained :(

@Ventress I’m eiight hrs behind you time wise so hope your chemo went wellI hope your side effects will settle down. You seem to have been bombarded with them. I have nosebleeds too. Not gushing, just steady. Ugh. I’m hoping you’re able to rest and I’m picturing you with a cozy blanket wrapped around you although in reality you have a home to keep going….

Thank you @ForestFlowerFairyand @Sbmpp. So these minor nosebleeds are probably tied to the chemo (I haven’t had radiotherapy). I just have various low level side effects. I have been incredibly fortunate not to have any extreme reaction. I would happily put up with the Chemo side effects like the exhaustion and flu symptoms as they have been knocking the lymphangitis back. I think I just have to accept that my lungs will never be very good but at least I’m not attached to an oxygen line.

I hope your chemo is going okay @Sbmppand that the side effects aren’t too harsh.

my good news is that I have now finished my current rounds of chemotherapy. Yay! My consultant is happy that my lung scans mean that I can move away from paclitaxel and onto rybocyclib. So Friday’s chemo is cancelled (I may still go in as I have half a supermarket of chocolate biscuits, shortbread and tubs of chocolates for the team).

I don’t know what will happen in the new year, my cancer is secondary so it’s never going away, but this feels like a big step forward for me.

@Ventress I am so pleased to hear your update from the oncology appointment. You must feel so pleased that Fridays chemo is cancelled, just think, you might be able to taste Christmas dinner!! 🤤.

@ForestFlowerFairy
Thanks for the advice ❤️, I’m definitely asking for Gelclair!
yes I do have the constant pink tissue and bloody snot, can’t remember the last time I didn’t! They’ve told me it’s a side effect of the chemo. If was me I would definitely opt for the BBQ, the kids will be fine in a tent with a hot water bottle.

@watchadewin
This waiting for staging really truly does suck balls, I’m so sorry you’re going through it. I ended up chewing all sorts of anti anxiety meds and was on the ceiling. You will get through this and once your treatment starts you will start to feel more in control. Sending

…

My day has been eventful. Woke up feeling horrible, did temp and it was high. Cut long story short, I’ve been admitted, I’m neutropenic and infection likely. So they’ve started me on IV antibiotics and I’ll be here at least overnight. Had a chest xray as I’m coughing up some weird and wonderful stuff too.

My oncologist came to visit me on the ward and updated me with my mid-way MRI results. Tumour has shrunk from 9cm to 28mm so she said she’s bloody thrilled with that, and all my nodes look spot on! So I’m pleased about scan obviously but pissed off I’m stuck in hospital. Although on brighter side I will have a nice rest .

Oncologist is going to reduce the dose of EC for future treatments as she doesn’t want to risk this happening again and said it’s better to get all 4 at reduced dose than have to miss some.

So I’m quite relieved that I might not feel as awful on the next one!!

Sending hugs to all, sorry I haven’t responded to everyone, I’m a bit useless today. They took me for Xray in a wheelchair and I was horrified. But when I try and walk anywhere I’m sweating and struggling to breathe. Fucking shit this cancer bollocks isn’t it.

@cannaecookrisotto wow you have had a horrible time it sounds so similar to the first chemo I had and I spent a lot of time in a lot of pain and the gastro issues are not a joke.
I hope that you feel better soon, I have to say that after my first bout I was ready to give up but now that the dose has been reduced and sickness meds more effective its been better.
Also of course you werent feeling well when you went to chemo so that wont have helped. Anyway my sympathies because its shit in every way. good luck for your appointment!

@Ventress good you have some nice plans for christmas I thought I would be doing chemo just before christmas but because of delaying second round I should now be able to eat a roast dinner.
A spaniel and sister in law for christmas sounds good, shocking to hear about her husband gone so young. That must be tough.

I did ask a question about saving your hair on the other thread I seem to have a bit of a thinning patch despite over four hours cold capping last time and I wonder whether the unit will provide me with something to cover the patch or whether i should buy something and if so what, some stuff i read said gauze to cover the patch?

maybe someone knows, I am just annoyed that I have started and nurse told me i would have to stop if i get bald patches.....

i am seeing oncologist before christmas so maybe they will know

wishing everyone well, its tough going through all this and the trots that seem to come with every treatment can do one.

You poor thing @cannaecookrisotto. You are correct thought - you will be forced to rest and recuperate as an inpatient. Plus you will have nurses and HCAs all around which I hope makes you feel really safe and secure. I hope your fever comes down soon and the infection eases off.

I spent two weeks as an inpatient and it’s really not bad I promise. A day or two and you will be back home. Just make sure you take it very easy.

wow that tumour has shrunk so much! You should be pleased with yourself; you always say that you can feel the pax eating away at the tumour (I took a lot of hope from that, thank you). Use the wheelchairs, get all the rest you can 💐

I’m glad the dosage of the EC is being reduced, that should help with the awful side effects.

I hadn’t even thought that I might be able to taste food again! What a bonus!

I’m glad you will be able to enjoy your Christmas dinner @cantbelieveIamhere. When will your next chemo be? Have they tuned the mix/dosage ?

I can’t help with hair I’m afraid as mine fell out (or at least thinned so much it as good as fell out). Those women I’ve known who have cold capped have found it effective. I would definitely ask the chemo team, or reach out to MacMillan.

Oh no @cannaecookrisotto I'm sorry you are feeling so rubbish. I hope you see improvement very soon from the antibiotics.

@Ventress so glad you had some good news and ending of chemo.

i hope everyone else had an ok day. Its so wet here in Wales. More flooding. But met an old friend. Tired now. My younger daughter told me I looked tired so it must be bad lol. I.e you look like shit mummy - in a nice way.

@cannaecookrisotto I’m so sorry to hear you’re in the hospital :( I’m hoping for a short stay because Christmas is just days away. It’s good to get a rest and let all the drugs work. I just got back from chemo. Dh and I went to lunch (I was feeling pretty good for once). Made it home and fell walking to the front 😵‍💫. My dh had hold of my arm so just part of me hit the ground. I’m so not surprised. Doing well and injections start Wednesday..

@cannaecookrisotto i think you have the mid cycle throat! I was reading my chemo log/ diary today whilst I waited to go in for my zoo infusion and noted the throat. I thought of you and was going to give you a heads up but your throat has beat me to it. I second the squirty gel as well as difflam. Are those sherbert sweets helping the claggy mouth at all?

and omg the chemo farts, I’d forgotten about those (blocked them out?) but they were quite something.

Zol infusion done. Back on Friday for bloods ahead of going back on Monday to be checked and issued with the next cycle of Ribocyclib tablets. I have seven days off them before restarting next week.

keep going, all

@cannaecookrisotto Absolutely thrilled to hear your tumor shrank and so much :)

@cannaecookrisotto so sorry you've ended up in hospital - I hope you can rest up and feel better soon Brilliant news about the tumour shrinking.

I still have nosebleeds. It is a chemo side effects, and obviously my capillaries are taking a while to repair and recover 🙄 my oncologist offered to refer me to someone who can cauterise it, but so far I've refused. Don't want any more medical appointments!